end of life nursing case study

Member Login
About The Project
Case Studies

Case Study 3 – Palliative and End-of-Life Care

Click here to review the draft palliative and end-of-life care – interactive case study..

The following case vignette provides key concepts that could be considered when developing a plan of care for a patient who may require a controlled substance to manage their health concerns. As with any clinical situation, there are many patient variables that must be considered, including comorbid conditions, social determinants of health and their personal choices. You may choose to include different or additional health history and physical examination points, diagnostic tests, differential diagnoses and treatments depending on your patient’s context however this case vignette focuses on the aspects relevant to controlled substances.

Danny Kahan NP-Adult, specialty is palliative care Joshi Kamakani – 70 year old male with metastatic prostate cancer June Kamakani – patient’s wife Kelli Kamakani – patient’s 40 year old daughter

Danny is reviewing the patient history outside the house or in the car before visiting the patient.

Joshi Kamakani is a 70 year old retired engineer that the Palliative Care home care team and I have been looking after at home for the last two months. Joshi was diagnosed with inoperable prostate cancer three years ago and has been treated with ablative hormone therapy. Six months ago, Joshi started to have pain in his hips. His oncologist ordered a CT scan and found he had metastases in his ribs, pelvis and lumbar spine. Joshi and his wife June had a meeting with the team at the cancer centre and decided not to go ahead with any further cancer treatment. Our team has been involved since. June called me yesterday and asked me to make a home visit. Joshi has been having more pain this week and has been spending most of his time on the couch. He cannot get around without assistance and is very fatigued.

Joshi’s past medical history includes hypertension and reflux. He is taking Predisone 5 mg PO BID, Leuprorelin Depot 22.5mg IM every 3 months, hydrochlorothiazide 25 mg daily and pantoprazole 40 mg daily.

For pain, Joshi takes Morphine slow release 100 mg q12h and has not needed additional medication for breakthrough pain so far.

Takes place in the home. Patient is seen reclining on couch in first floor living room. Wife and daughter present.

Danny rings the doorbell and June lets him in.

June: Hi Danny. I’m so glad you’ve come.

Danny takes off his coat and shoes and walks into the living room. Kelli is sitting with her father who is covered up with a blanket on a couch in the main living area – he is awake but obviously drowsy. He smiles at Danny and holds out his hand. Danny shakes it a sits down in a chair opposite.

June: His pain killers just are not working any more – he’s uncomfortable when he is resting and it’s worse when he has to move around. It’s been happening for the last few weeks. He hasn’t had a fall but he is unsteady on his feet – especially soon after he get up. Joshi: I tried some acetaminophen from the drug store a few days ago but it really didn’t work. Kelli: Danny, you have to do something. He’s so uncomfortable. Danny: OK let’s talk about this a bit more. Joshi, were you sleepy after we increased the morphine 2 weeks ago? You were at 80 mg for each dose and now you are at 100 mg. Joshi: I was a bit sleepy for a few days and I had a bit of a weak stomach but that is gone now. I am a bit constipated though. Danny: when did you have your last bowel movement? Joshi: 4 days ago. Danny: OK we will have to address that today. I’d like to use the scale that I used at our last visit, it’s called the PPS, to assess your level of activity. ( Edmonton symptom assessment scale and Palliative Performance Score). Your PPS is 40% – last time I visited you were at 60%. June: yes, he is definitely having more trouble. I think the pain is preventing him from moving and that’s just making everything worse.

Danny: Joshi, your pain interference score tells me that the pain is severely interfering with your activity and I see that you are rating your current pain at rest at 6/10 and at 10/10 when you move. When I examined you, I did not note any changes from my last visit except for some new swelling over your left hip. June: Yes that’s where it is most sore – and before you ask, I am not going to the hospital for an xray. Kelli: Why can’t you just double his dose?

Danny [THINKS]: I will also add a bowel regime to address Joshi’s constipation and provide an order for a PRN anti-nauseant like metoclopramide or ondansetron. Joshi and his family will need to have education about the timeline of the peak benefit of the change in the regular dose, keeping track of PRN use, proper use of breakthrough medications (before care or any activity that causes pain), any other interventions we can include to help with his pain including adding other medications.

June: Danny, can I speak to you in private for a moment? June and Danny move to a private area of the house. Kelli and Joshi remain on the sofa. June: Danny, I have some concerns about having extra medication in the house and I need some advice on how to deal with this. My daughter had a real problem with drugs when she was in high school. She had to have treatment and as far as I know, she has been clean for the past 2 years. I have talked to her about having medication in the house and she tells me she’s not tempted but I really want to be sure we don’t have any incidents. I trust my daughter but I do worry that some things are beyond her control. Danny: Well June, it is always a good practice to have a plan for safe storage of medications. Here is some information about where you can purchase a locked box. I recommend you keep a key and have the hospice nurse take the other and have it numbered and controlled at the hospice office for the use of the nurses that care for Joshi. In the meantime, keep the medications in a place that you and Joshi can monitor and please keep a count of the medication in the containers and continue to write down when medication is given. June: Thanks Danny – I don’t want my daughter to think I don’t trust her. This should help.

Two weeks later – Danny is back in his office reviewing Joshi’s file with a Nurse Practitioner student…

Follow-up case question by Danny.

Student: Next up is Joshi Kamakani for review… Danny: Well, I’ve just been to see Joshi and his family. It has been two weeks since we increased his dose of morphine SR. We also added a neuropathic pain agent to help with his pain which has made him a bit more drowsy. He continues to take 20-30 mg breakthrough morphine/day and I noticed today that he has some myoclonus. Joshi’s pain is still in the moderate range with activity and now nausea is a problem.

Opioid rotation and opioid equianalgesia from NOUGG (McMaster Guidelines).

Danny: I think a rotation of opioid is the next step. Student: What medication should Danny consider and at what dose?

Danny: Joshi is using 270 mg oral morphine equivalents per day. To convert this dose to hydromorphone, the medication I have chosen to rotate to, we multiply by 0.2. Morphine 270 mg x 0.2 = 54 mg hydromorphone/day. We will want to convert 60% of the total daily dose so 54mg x .6 = 32mg. I want to give Joshi the new dose in a slow release form. It is most practical to provide Joshi with hydromorphone SR 15mg q12h and also provide him an additional 2-3 mg of hydromorphone immediate release for breakthrough pain. Providing him with the breakthrough dosing will be sure Joshi can have additional medication to help him until we are sure we have a stable, effective dose in 48-72 hours.

Learning Outcome

This interactive case study covered the following information:

Opiate Titration
Opiate Rotation
Pain Assessment
Assessment of adverse effects
Safety Assessment
Collaboration
Family centred care

(Stanford users can avoid this Captcha by logging in.)

Send to text email RefWorks EndNote printer

Case studies in palliative and end-of-life care [electronic resource]

Available online.

Wiley Online Library

More options

Find it at other libraries via WorldCat
Contributors

Description

Creators/contributors, contents/summary.

Contributor List viii Introduction xii Margaret L. Campbell
Section 1 Communication Case Studies 1 Case 1.1 Communicating about a Progressive Diagnosis and Prognosis 5 Julia A. Walch Case 1.2 Diagnosis/Prognosis Uncomplicated Death at Home 12 Constance Dahlin Case 1.3 Accommodating Religiosity and Spirituality in Medical Decision-Making 18 Jennifer Gentry Case 1.4 Discussing Cardiopulmonary Resuscitation When it May Be Useful 26 Kelli Gershon Case 1.5 Discussing CPR When it is a Non-Beneficial Intervention 33 Judy Passaglia Case 1.6 Discussing Brain Death, Organ Donation, and Donation after Cardiac Death 41 Christine Westphal and Rebecca Williams Case 1.7 Discussing Physiological Futility 52 Judy C. Wheeler Case 1.8 Wounded Families: Decision-Making in the Setting of Stressed Coping and Maladaptive Behaviors in Health Crises 60 Kerstin McSteen Case 1.9 Notification of an Expected Death 68 Peg Nelson Case 1.10 Death Notification after Unexpected Death 73 Garrett K. Chan
Section 2 Symptom Management Case Studies 83 Case 2.1 Pain: Cancer in the Home 87 Constance Dahlin Case 2.2 Treating an Acute, Severe, Cancer Pain Exacerbation 98 Patrick J. Coyne Case 2.3 Pain and Advanced Heart Failure 104 Margaret L. Campbell Case 2.4 Dyspnea and Advanced COPD 110 Margaret L. Campbell Case 2.5 Dyspnea and Heart Failure 117 Garrett K. Chan Case 2.6 Treating Dyspnea during Ventilator Withdrawal 128 Margaret L. Campbell Case 2.7 Cough Associated with COPD and Lung Cancer 138 Peg Nelson Case 2.8 Hiccups and Advanced Illness 145 Marian Grant Case 2.9 Treating Nausea Associated with Advanced Cancer 152 Judy C. Wheeler Case 2.10 Nausea Associated with Bowel Obstruction 161 Terri L. Maxwell Case 2.11 Nausea Related to Uremia, Dialysis Cessation 168 Linda M. Gorman Case 2.12 Opioid-Induced Pruritus 176 Richelle Nugent Hooper Case 2.13 Pruritus in End-Stage Renal Disease 183 Linda M. Gorman Case 2.14 Opioid-Induced Constipation 190 Grace Cullen Oligario Case 2.15 Depression in Advanced Disease 198 Todd Hultman Case 2.16 Treating Anxiety 205 Darrell Owens Case 2.17 Terminal Secretions 213 Terri L. Maxwell Case 2.18 Fungating Wounds and the Palliative Care Patient 220 Laura C. Harmon Case 2.19 Pressure Ulcer Care in Palliative Care 229 Laura C. Harmon Case 2.20 Treating Ascites 239 Darrell Owens Case 2.21 Delirium Management in Palliative Care 247 Kerstin McSteen
Section 3 Family Care Case Studies 257 Case 3.1 Caring for the Family Expecting a Loss 259 Patricia A. Murphy and David M. Price Case 3.2 Anticipatory Grief and the Dysfunctional Family 266 Rita J. DiBiase Case 3.3 Acute and Uncomplicated Grief after an Expected Death 277 Rita J. DiBiase Case 3.4 Bereavement after Unexpected Death 289 Garrett K. Chan Case 3.5 Complicated Grief 300 Rita J. DiBiase Index 309.
(source: Nielsen Book Data)

Bibliographic information

Browse related items.

Stanford Home
Maps & Directions
Search Stanford
Emergency Info
Terms of Use
Non-Discrimination
Accessibility

Nursing Care at the End of Life: What Every Clinician Should Know

(15 reviews)

Susan E. Lowey, SUNY, Brockport

ISBN 13: 9781942341192

Publisher: Open SUNY

Language: English

Formats Available

Conditions of use.

Learn more about reviews.

Reviewed by Marty (Martha) Fabian-Krause, RNBS, Adjunct Clinical Instructor, Rogue Community College on 11/29/22

From history, definitions, trajectories, stages of death, hospice and palliative care , interpersonal communication nurse to patient, symptom management, bereavement, this text is very thorough and progressive. read more

Comprehensiveness rating: 5 see less

Content Accuracy rating: 5

No issues encountered.

Relevance/Longevity rating: 5

Totally current in time and cultural relevance for today’s healthcare.

Clarity rating: 5

Written clearly with current accepted terminology.

Consistency rating: 5

This text follows a progressive style with each section building upon the next. The topics can be used independently also.

Modularity rating: 5

Can be easily assigned in smaller sections or changed in order depending on the class structure.

Organization/Structure/Flow rating: 5

This text is well organized with an opening introduction, the body of work, and an easily to understand closing.

Interface rating: 5

The grafts and charts are relevant and easy to comprehend. They are included in most sections.

Grammatical Errors rating: 5

No grammatical errors noted.

Cultural Relevance rating: 5

The writing style includes a wide population base with some detail to further research with reference to particular cultural groups available.

Important material about medical ethics, withholding, withdrawing medical care discussed and clarified in closing content. Very relevant for healthcare practitioners. Special consideration to grief and loss and the work of Dr Elisabeth Kubler Ross.

Reviewed by Nicole Trainer, Assistant Clinical Professor of Nursing, The George Washington University on 1/31/22

The book is very comprehensive and provides all details a novice nurse needs to know without overcomplicating the clinical situation. read more

The book is very comprehensive and provides all details a novice nurse needs to know without overcomplicating the clinical situation.

The book is accurate and provides evidence-based interventions for nursing practice within the hospital and community settings.

This book is extremely relevant to nursing practice. It makes a great point that only 2% of nursing curriculum focuses on end of life however, the vast majority of nurses will need to know how to care for the dying patient and family.

The book is clearly written and provides clear guidance to care for patients and families at the end of life.

The book is consistent in terms of terminology and framework. The afterward provides a real-life interview of the author that addresses the great need for resiliency in nursing practice relating to death and dying. The final chapter provides resources.

I really appreciated the division of reading with "Anticipation", "In the moment", and "Afterwards". These sections make a lot of sense when you are working with dying patients. The anticipation section prepares students for the in-the-moment part which would be the most anxiety-approaching aspect of dying.

The book's organization is clear and logical.

The text was easy to navigate and broken into chapters that were placed in logical sections.

No grammatical errors were found.

Cultural Relevance rating: 4

The book references different spiritual and cultural beliefs but does not detail specific races, ethnicities, and backgrounds. There are no cultural insensitivities noted and the book is in no way offense.

This textbook is exceptional and the content should be integrated into the curriculum of all nursing schools. The writing is concise, meaningful, and approaches a difficult topic in a positive way. Communicating healthcare wishes in a careful manner during the dying process is explained thoroughly.

Reviewed by Laura Mallett, Assistant Director of Nursing, Neosho County Community College on 6/3/21

The book covers all areas of the End of LIfe that a clinician should be aware of. The information would be good for novice nurses. read more

The book covers all areas of the End of LIfe that a clinician should be aware of. The information would be good for novice nurses.

We do a Death and Dying course as an elective in the program and use the online course. Comparing the two I would say this covers information well and actually goes presents it in more detail.

Very relevant to nursing education.

Written very well.

Consistent with the resources and best practices that I could see.

The book can be divided into modules easily.

The organization of the book is sequential and makes sense.

I think it is well written and no distractions noted

None that I saw in the review process.

I did not see anything that would alert me to cultural insensitivity.

I feel this would be a good resource or even book to use within the curriculum for nursing programs

Reviewed by Linda Mollino, Director of CTE Program, Oregon Coast Community College on 1/11/21

Comprehensiveness rating: 4 see less

Overall, this book provided a comprehensive look at the role of nursing care in end-of-life care. Much of the content is presented in a detailed format and presented at a level that an undergraduate nursing student would understand and apply the content into their clinical practice. However, I would have liked to see additional information on the non-pharmacological approaches to pain and symptom management.

No errors were noted with regard to content, but it does present content from a single clinicians' point of view. The references do back-up the content.

Content is current and will stand-up to time. it is important for the reader to understand that laws could affect the approaches to care such as the use of marijuana based on state and federal laws and new approaches to pain and symptom management.

Clarity rating: 4

Very readable for an undergraduate nursing student. The charts presented were good but the use of tables and charts whenever possible to keep the student engaged in the topic is very important. So additional resources would have assisted in solidifying the content for the reader. The use of outcomes at the beginning each chapter and focus statements at the end of the chapter is very effective for solidifying the chapter content for the reader.

The information presented was consistent, through this probably is due to the fact that it was presented with one author's voice. However, there were no inconsistencies noted in the information presented.

The way the text is outlined, it can easily be broken up into smaller modules. This would be very effective for the instructor in dividing up content lessons. The book would totally support this approach. Example: historical approach vs. symptom management.

Organization/Structure/Flow rating: 4

The information was presented in a very organized matter, bringing in an historical perspective, and moving through the important topics such as palliative care vs. hospice care, on to pain management and the emotional/spiritual aspects of care at the end-of-life. One element that would have added to the flow of the content is case presentations and/or scenarios.

There were no interface issues. The book flows well in a number of interface programs. The charts are readable, pages remain consistent with the table of contents and the reference links are accessed in new tabs thereby locking the content and allowing the readers to maintain where they were within the book.

No errors were noted. Again, the flow of the book makes it readable for an under-graduate nursing student.

Although the chapter on "Diversity in Dying" is done well, it would have been more effective if some of this content was included throughout the book such as in the chapter "Initiating Conversations about Goals of Care.

Overall, this book is effective in presenting the concept of end-of-life care. Case studies would have brought the information home to the reader. However, the last part of the book that focuses on "lessons learned" does solidify the information presented. The hope is that book will engage the reader, encouraging them to look at other resources in the care of patients at the end of their lives.

Reviewed by Thomas Dombrowsky, Clinical Assistant Professor, University of Texas at Arlington on 2/19/20

The book addresses all the major areas of end of life care. I would have liked to see more specifics about symptom relief and about non-pharmaceutical methods for addressing pain. read more

Comprehensiveness rating: 3 see less

The book addresses all the major areas of end of life care. I would have liked to see more specifics about symptom relief and about non-pharmaceutical methods for addressing pain.

Content Accuracy rating: 4

No errors of fact were detected. The content was presented from the perspective of the author's experience, but due to the nature of the case that is what one would expect.

Relevance/Longevity rating: 4

The content is up to date. However, state laws regarding end of life care are rapidly evolving. This is especially true in the area of assisted suicide. The book mentions states that currently allow physician assisted euthanasia but does not acknowledge that this is an area where law and societal norms are rapidly changing.

The text is quite readable. Technical terms are explained as soon as they are introduced. The objectives for each chapter give a clear idea of what to expect, and content is appropriately summarized at the end.

Consistency rating: 4

There is only one author, so the style is highly consistent.

Modularity rating: 4

Each chapter stands on its own. Chapters could be assigned individually or used along side content from other sources.

The organization is logical and clear. Content could easily be used in order in a course focusing on end of life.

Interface rating: 4

The interface is clean. Appropriate tables are used. There is a lack of diagrams or pictures, but diagrams and pictures would not necessarily be helpful.

Grammatical Errors rating: 3

The author uses gender inclusive pronouns but there are some inconsistencies in their use that are a little distracting.

The text is inclusive and no insensitivity was detected. However the content was quite specific to US law and customs, so it might be less useful in an international educational setting.

I was disappointed by the section on pain control. The author led with pharmaceutical interventions. This is of course what is usually done, but I would have liked to see an emphasis on non-pharmaceutical interventions. Actually little was said about non-pharmaceutical interventions, and practical suggestions along this line were not offered. Most patients do indeed need medications, but too often the non-pharmaceutical interventions are an afterthought when medications are not effective rather than leading with the non-pharmaceutical interventions and including medications as well in a comprehensive plan of care. The section could be strengthened by adding content on the physiology and psychology of pain transmission and how pain control methods work. The chapters on emotional and spiritual distress and on communication were excellent.

Reviewed by Lisa Kuppler-Lee, Nursing Faculty, Radford University Carilion on 2/14/20

The on-line book is very informative on most aspects of "end-of-life-care" (ELOC). Unfortunately, it provides minimal information regarding Advanced Directives and Healthcare Power of Attorney. These two issues are becoming more of a problem in the hospital setting. Patients and/or family members are asked if an Advanced Directive or Power of Attorney is available on admission.

EOLC is so important. This text is error-free. The author provided unbiased information based on the different professional journals and books cited and referenced. The publications are well-known medical and nursing journals.

The book was up-to-date when it was published and EOLC will never become obsolete. In fact, its relevance increases as our life expectancy increases. Based on how the author arranged the text, the updates would be easily implemented.

Although the text is written primarily for healthcare professionals, an educated layperson could easily understand the book.

The material presented followed a consistent understandable format. At the end of each chapter was a section titled "What you would know". This provided highlights of the chapter in a few sentences.

The modular design of the various chapters make a strong pulling point for this book. Each chapter can stand alone by itself or have the flexibility to be part of a module. You can assign a few chapters as a module to be part of their current assignment. The book can be used as reference material for an assignment.

The book is very well organized. Its starts with history of EOLC and ends with breavement.

I used the PDF version. The text was easy to read and the various charts were significant to the chapter. The charts were clean without any distortion.

No grammatical errors were noted.

The book was not insensitive or offensive. The book only provided a chart on the different cultural/religious beliefs pertaining to care of the patient after death. Many of the different cultures/religious have rituals taking care of the patient prior to death. More in-depth information needs to be provided about the different cultures/religious groups.

Reviewed by Laurie Schroder, Program Coordinator & Assistant Professor, East Tennessee State University on 10/6/19

The text is comprehensive in its scope but only touches on many topics which would benefit from more depth, such as ancillary pain treatments and assessment tools utilized with patients. While the author is obviously knowledgeable about the topics introduced, many may be unfamiliar to readers and a list of additional reading or references for those interested in pursuing more information might be helpful. It is understood that many of these topics are beyond the scope of this text, which makes this text both more readable, and slightly less comprehensive.

Overall, the text is accurate and material presented is supported with current research. Occasionally, an inaccuracy occurs, such as a statement on page 69 that seems to indicate that physical tolerance of a medication is analogous to withdrawal, but this seems to be the result of an editing error more than one of inaccurate facts.

The content is up-to-date and relevant, and is unlikely to become obsolete quickly as it does not serve primarily as a scientific text. Although some statistics are included, they are not terribly important in terms of bolstering any textual arguments.

The text is clear and accessible, with very little in the way of professional jargon. The author generally makes her point and provides sufficient anecdotal or research support for it. In some cases, the writing style is almost too informal, and weaves back and forth between present and future perfect progressive tense, or between addressing the reader directly as "you" and more formal technical-style writing.

The text is generally internally consistent. Those minor inconsistencies that exist (e.g. a suggestion that patients be included in meals and encouraged to eat their favorite foods, vs. a later suggestion that patients be given bland, cool foods to eat) are easily sorted out by individuals with a healthcare background, and could be readily explained by a knowledgeable instructor. The text is generally informal and written to relate the author's extensive personal experience with the dying and their families, and reads as a personal communique with some current evidence-based information and medical background added in as support. If intended for that use, the book would serve well; if intended to provide a thorough presentation of the pharmacologic, therapeutic, rehabilitative, etc. framework for death and dying, there is insufficient breadth and depth present.

This text would lend itself easily to being divided into easily read and digested units for a course. Although perhaps not entirely comprehensive, it would serve as a good jumping-off point for material that permitted students to self-assess their own biases related to death and dying, palliative care, and grief.

This text is well-organized, beginning with a historical (if purely Westernized) view of end-of-life care and ending with a chapter on bereavement, and includes chapters that cover illness trajectories, frameworks of death and dying, palliative and hospice care, and an in-depth section related to the relationship, both professional and personal, that exists between the nursing caregiver and the dying patient.

I elected to review the pdf version of the text, which downloaded without difficulty, was easy to navigate, presented with no interface errors, and with which I was able to use the search tool.

Although the text does not contain notable, consistent grammatical errors, it is written in the style of a thesis paper, and at a relatively basic reading level. Some stylistic elements may grate on the college-level reader, such as references to inanimate systems that "grow and develop", "less" and "fewer" being used interchangeably, references that are unclear (e.g. "those diseases"), and other word and phrase choices that would be well-served by some revision. Additionally, the author tends to move freely among tenses within any given paragraph, which slows reading and comprehension. Clunky sentences, such as, "While there are certain things that are not warranted in a nurse's role to talk about, such as delivering bad news or a terminal prognosis, there are plenty of other informative things that can be discussed with the patient.", may cause the reader to pause unnecessarily. The occasional missing apostrophe, misused term, and redundancy ("also", "as well", "in addition" - more than one present in one sentence) would also have been eliminated by a good editor. Finally, as a note regarding writing style, moving from an informal manner similar to direct discussion with the reader ("So now you have a basic understanding about illness trajectory") to a formal style, adds an additional obstacle to making this text easy to read.

Cultural Relevance rating: 2

Although the text includes a chapter on "Diversity in Dying: Death across Cultures", it only serves to outline traditional American death and burial traditions and to provide a table of abbreviated beliefs from different religious traditions. The text does urge individuals working with patients and families from different cultures to be intentional about learning more about their values and traditions.

This book is an easy read, and while it has some stylistic issues, these are minor. It does a very good job of presenting a realistic personal perspective, from an experienced nurse, of the many facets included in the work (and calling) of providing care to patients and families during a difficulty period in their lives.

Reviewed by Monica Schibig, Associate Clinical Professor, University of Missouri on 1/15/19

This text does a respectable job of including all the key elements for one's understanding of end of life care (EOLC) issues. Some information on the basics of the legal side of EOLC would be helpful. Part of the discussion surrounding EOLC is to assist the patient in understanding the various components of written documentation of their wishes, such as advanced directives and power of attorney.

I did not notice any errors in the book, but this is a topic where the statistics supporting the information can easily change over the course of a couple years, so one needs to take into account he authoring year.

Relevance is one of the book's strengths. It is a fairly easy read which should increase the likelihood that the student or healthcare professional will read the entire book. future updates seem quite manageable.

The author did a great job of writing for a broad audience. It is not overly "medical" and presents the information in such a a manner that most lay individuals could comprehend the book's material.

The consistency throughout the book is one of the main reasons that a lay individual could easily absorb the content of this book.

Modularity is another strength of this book. Not only could an instructor assign the various chapters to coincide with a student's progressive matriculation through a program, but each section can stand on it's own and is not dependent on previous content. This lends nicely for faculty that may only want to emphasize certain sections of the book.

I believe the organization of this book is excellent, with one exception. In the last section, "Afterword Evaluation of Self: Lessons Learned", the first objective is "Evaluate one's own attitudes and beliefs about death and dying". The author goes on to focus mostly on caregivers that work in hospice, which leaves a gap for many other healthcare professionals, such as those that work in ICU's and ER's. Additionally, I think devoting some time to processing one's own feelings about dying could be beneficial in the beginning of the book.

There are many tables and charts that contribute significantly to the readers understanding of the content, such as the cultural differences (pg. 113-114).

Lack of perceived cultural sensitivity in healthcare is one reason many patients do not seek care, especially in the end of life stage. This book does an excellent job of bringing that to the forefront and arming the reader with knowledge and examples to feel confident in caring for a variety of patients who culture may differ from their own.

I enjoyed reading this book and look forward to incorporating the content in my own classes.

Reviewed by Patricia Drees, Assistant Professor, Fort Hays State University on 11/29/18

There is no index at the end of the work. There is a list of websites that can be used as resources for further reading. The topic is covered logically and groups the subtopic by when these topics occur in the life and death experience. read more

It is accurate and evidence based. Pain management and ethics are objectively discussed. Pain management is an area of nursing that tends to bring out opinions more than evidence to guide care. This warns against that.

This is relevant to nursing as it expands the topics: 1.fear of death 2.fear of pain in dying 3.accurate information on death process (physiological processes) 4.accurate information on pain medications 5.grief and hope 6.spiritual distress 7.application of ethical principles as related to death and dying

Accepted and appropriate terms are used. Written in standard American English.

The educator could easily ask the student to read a section to expand upon what is being taught in class.

It flows sequentially using a timeline or several timelines to capture the death and dying process.

Being an online book requires a different sort of navigation. It may require conversion to a format where the student can search out specific parts. I was unable to sign in. I downloaded a PDF. Perhaps, the other format had this feature.

If grammatical errors occur, they did not hamper my understanding of the content.

It is based on the American death and dying experience. It has a section on cultural care. It is brief and not the most comprehensive resource on that, however, it would not lead the nurse astray if this is the only source of cultural information. It has brief examples of religious and ethnic variations in beliefs and customs.

If I were teaching health and illness, it would be an adjunct source on pain medications and dying. As a mental health instructor, I could pick out different sections to supplement and expand topics. The spiritual distress section would be useful. This resource is good to look at the family dynamics of death and dying. I do not have a nursing book in the curriculum that this could 100% replace. The citations after each chapter alone would be a goldmine for students trying to learn more about the topic.

Reviewed by Sandra S. Lee, PhD, RN, CNE, Assistant Clinical Professor of Nursing, University of Houston on 5/21/18

The book addresses all areas of end-of-life care, starting with history, frameworks, and models of care. The middle section sufficiently covers the symptoms and corresponding interventions that a hospice nurse would most commonly encounter in the illness trajectory. Although there is not an index or glossary, the table of contents is clear enough to quickly identify and find topics of particular interest.

The content is accurate and reflects current knowledge and science around end-of-life care.

The content is up-to-date and utilizes reputable sources throughout. A resource list at the end of the text gives the reader links to online sources which are not likely to change, such as the American Geriatrics Society and the American Medical Association, Institute of Medicine, etc.

The text is refreshing to read. It challenges the reader with expanding knowledge and points of critical discussion and handles a weighty topic in a way that is easy to think about and digest. The narrative is clear and easy to understand yet obviously scholarly and well supported by the current research and literature in end of life care.

The text is clear and consistent with its terminology and approach.

What really stands out is the large-font chapter titles, a poignant quote at the beginning of chapters to introduce the reader to the topic, and the learning objectives clearly indicated in a black and white box. The "What You Should Know" key points are easily identified at the end of each chapter by a green box, highlighting the most important take-aways from each chapter. References follow each chapter.

Each chapter begins with large-font chapter titles and a poignant quote at the beginning of chapters to introduce the reader to the topic. The learning objectives are clearly indicated in a black and white box. The "What You Should Know" key points are easily identified at the end of each chapter by a green box, highlighting the most important take-aways from each chapter. Each chapter is organized in the same way, so the reader knows what to expect while progressing through the text.

The interface is excellent. The no-frills approach in a PDF allows easy download and storage onto multiple device. I enjoyed reading the book on my iPhone. The reader won't find complicated graphics, images, or interactive activities in the text. Instead, Dr. Lowey opted for a simple, streamlined approach that I found aesthetically pleasing and easy to navigate between chapters. Charts and graphics are carefully selected and strategically placed wtih full explanations.

No grammatical or formatting errors were noted. The text is easy to read yet employs professional language and terminology.

The book approaches the subject of end of life care with sensitivity, knowing that many nurses are not comfortable with the topic or their ability to provice sufficient care. Dr. Lowey assures readers of all experience levels that the nursing hesitancy and limited of knowledge in end of life care is widespread. She empowers the reader that our presence and voice is our greatest and most effective intervention during end of life care. A specific chapter addresses the diversity and death practices across cultures and summarizes the religious beliefs for each of the world's major religions. No book or chapter could possibily comprehensively consider all cultural beliefs around death, dying, and funerals, but Dr. Lowey gives us a good starting point.

Nursing Care at the End of Life: What Every Clinician Should Know is a real gem for nursing students, experienced clinicians, and those new to hospice care. Having such an outstanding resource in the Open Textbook Library is a gift to the nursing profession, and to our patients. The text gives a practical, relevant, well-written, and comprehensive resource to draw upon when caring for patients in the palliation/hospice trajectory. The very best chapter is the last one in which Dr. Lowey reflects on what it's like to be a hospice nurse, how she copes with her own sadness when patients die, and other common questions that hospice nurses are often asks. If a nurse is thinking about becoming a hospice nurse and reading this book to get information, the last chapter will clearly help guide the decision. Several chapters could stand alone as reading assignments in other courses such as medical-surgical nursing or psychiatric care, or a course addressing cultural aspects of care. Whether used in its entirety, in part, as required or optional, this text is a must have in every nursing education program. I definitely plan to use this text in my classes for both required and optional reading assignments. Great job and outstanding work, Dr. Lowey!

Reviewed by Nancyruth Leibold, Associate Professor, Southwest Minnesota State University on 2/1/18

Nursing Care at the End of Life: What Every Clinician Should Know is a comprehensive book about caring for patients and families at the end of life. All areas and ideas related to nursing care at the end of life are included. A Table of Contents... read more

The textbook includes accurate information about end of life care that is supported with evidence from the literature. The content is free of errors and unbiased

Nursing Care at the End of Life: What Every Clinician Should Know is relevant information as information about End-of-Life case is important for health care professionals to know and apply when caring for patients and their families at end-of-life. The content will not be quickly outdated, which is a major concern in nursing topics.

Nursing Care at the End of Life: What Every Clinician Should Know is clear and easy to read. The book includes professional vocabulary, but defines the terms used.

Consistent terms and frameworks are used throughout the book.

Nursing Care at the End of Life: What Every Clinician Should Know is presented in smaller reading sections with headings and subheadings to divide up the chunks of content. The book is not overly self-referential. Dr. Lowey cites her work in this area, but it is not overdone.

Nursing Care at the End of Life: What Every Clinician Should Know is well organized and flows well. There are 12 chapters in the text. Each chapter includes learning objectives, content, a “What You Should Know” section, and references. The major sub-topics for end of life care are included. And Afterword and End of Life Care Resources section is included. The tables and figures are helpful and point out the key ideas.

When I read the book in the online format, the font changed to difficult to read fonts and also changed to italic for some chapters. I found this difficult to read. The figures and tables were not impacted. I recommend using the PDF format of the book for this reason as it was consistent and easier to read. This may have been some odd technical aberration, but did happen to me at several different checks on different days. However, I mention in case you have similar issues so you can try the PDF as another option. Being able to download the PDF is an awesome plus!

The book is free of grammar and spelling errors.

This book includes a chapter about Diversity in Dying. The chapter outlines various religious beliefs and practices related to death and dying. Nurses are told to become familiar with the death and dying practices of the family. This is appropriate because families will have their own cultural practices that may or may not be used by everyone of their culture or religious affiliation.

Nursing Care at the End of Life: What Every Clinician Should Know is a well written book with outstanding content and organization. Thanks to Dr. Lowey for this open educational resource!

Reviewed by Dawn Cullison, Assistant Professor, Reynolds Community College Richmond, Virginia on 2/8/17

This book is very comprehensive and the author's scaffolding of foundational to more complex concepts yields a very thorough and yet concise understanding of the content. read more

This book is very comprehensive and the author's scaffolding of foundational to more complex concepts yields a very thorough and yet concise understanding of the content.

This book contains very well researched, current, and unbiased information, allowing the reader to glean an understanding of the various theories of death and dying and the myriad of approaches to the care of the dying patient.

The content of this text is current, relevant, and most essential in the training of nursing students and is written in such a manner as to not require frequent updates. The content is applicable to all facets of nursing as death and dying are encountered in any given specialty within the nursing profession. This text serves to fill in the gaps of coverage of death and dying in many nursing programs and would also be of benefit to the practicing nurse who desires to pursue additional independent learning opportunities.

The text is written in a manner consistent with educational resources aimed at the target population of nursing students, however, even one not familiar with nursing jargon/technical terminology would benefit from reading and be able to understand the overall intent of the text.

This text is divided into very concise chapters and utilizes a consistent framework throughout, which allows the reader to quickly identify the author's given style of writing, yielding an ease of comprehension and expeditious sense of familiarity and understanding.

This text is written in a format of very concise, modular sections which could easily be dissected and read in part, but also as a whole. The text references multiple sources of a wide range of expertise, offering the reader many opportunities to explore a particular topic of interest in greater depth.

The topics are presented in a clear, logical, and systematic manner, allowing the reader to either review or learn afresh the foundational principles and then move deeper into the more complex and finely tuned content.

This text is free of any significant interface issues, and no distortions of content, images, or charts is noted. The text was downloaded without difficulty and the formatting is clear, consistent, and reader-friendly.

The text contains no grammatical errors.

This text is culturally sensitive and addresses the unique differences in terms of cultural or religious views of death and dying while avoiding generalizations. The text seeks to educate the reader on the wide range of patient, family, and health care professional responses to death and dying while also avoiding generalization. This facet allows the reader to glean insights without forming potentially inappropriate or inaccurate presuppositions when faced with other cultures or religions in practice.

This book is an invaluable resource to all nursing students and practicing nurses as it very concisely articulates the unique complexities encountered in the care of the dying patient and the dying patient's family. This book accurately asserts that the content explored in this text is often covered minimally in the traditional nursing curriculum, leaving many nurses feeling inadequate, unprepared, and less than confident when caring for the dying patient in practice. This book more than adequately fills the void and I will be utilizing this resource in the future. Thank you for compiling and sharing this information.

Reviewed by Cindy Yascavage, Instructor, Temple University on 8/21/16

The text is comprehensive and appropriately provides a basic understanding of terms of a difficult topic for care givers. read more

The text is comprehensive and appropriately provides a basic understanding of terms of a difficult topic for care givers.

The book's content is accurate and supported appropriately with relevant references.

Even though some of the material seemed old, it is the gold standard. The content is up to date, and somewhat ageless. Medications for pain may change, however, learning how to manage palliative care clients remains difficult for many.

There text is not written with techinical terminology such as medical procedures, however, to a nonmedical person, there might be some terminology they are unfamiliar with.

The text is consistent in terminology and framework throughout the text. For example each chapter begins with learning objectives.

The text is easily divided into smaller section that are managable for assignments.

The text is organized and presented in a logical and clear fashion.

The text is free of significant interface issues. There were not any navigation or chart distortion issues on computer or phone display access.

The text was written without any noticeable grammatical errors. It was written at a level that a nurse could share the text with a family member and they could understand the information.

The text touches on a cultural diversity and end-of-life care in a very non-offensive way.

This text is a great addition to any course that discusses end of life. It touches on hospice and palliative care, as well as pain control when dying, all in one text. Many texts are lacking this combination.

Reviewed by Michael Torguson, MS, MA, Bioethicist; Past Chair for Education & Policy - Ethics Committee, Rogue Valley Medical Center (Medford, Oregon) on 8/21/16

Health Care is - by definition - a profession that is focused on preventing the end of life. This text aims to guide health care providers through the inevitable process that all patients will experience, divided into stages of care: Anticipation,... read more

Content is presented in as unbiased a manner as is possible with such a high-emotion subject.

Content is very timely and up to date. There are some references that are older (greater than 10 years), but they are included in such a way that the age of the study does not detract from the predominant thesis in each chapter.

Updating the work to include the latest trends in best clinical practices should not be difficult, as the compartmentalization of the information - while building on previous learning - is not so interwoven as to substantially detract from the flow of the narrative.

Written in such a way as to be accessible to a layperson not clinically trained, but also not too basic for the healthcare provider, the text is clear, concise, and accessible to the reader. When complex clinical information is presented, it is not dumped on the reader; rather there is a "ramp up" feel to the content.

There is good consistency in the book, as well as mercifully few "callback" references to earlier chapters.

The three main content areas (Units?) work well to guide the clinician through the process of learning about the end of life process. Within each of these units, however, the individual chapters - upon first reading - seem to require the healthcare provider to take each chapter in order. Once read and when the content is familiar, however, the chapters are useful as stand-alone references.

Highest marks for the organization and flow of the book. Leading the clinician through the death and dying process in a chronological "presentation of symptoms" order makes the text exceptionally well suited for this subject. Again, once the healthcare provider is familiar with the text, then accessing specific information in non-sequential chapters is not only possible, but easy.

This reviewer experienced no problems with the format of the text.

No errors in grammar, punctuation, or sentence structure/mechanics.

No text can be all things to all people. This text manages to hit the "middle of the bell-shaped curve" in that it is applicable to most people under most circumstances, most of the time. The Ethics chapter will be the most "controversial," as Ethics is - by definition - a morality based, Right-And-Wrong subject. Further, there is no overtly judgmental language when dealing with controversial topics (withdrawing/withholding care, assisted dying, etc.). Being from Oregon, I would have personally liked to see more than one paragraph on assisted suicide, but the author's treatment of the subject is satsifactory.

The layout of each chapter is especially useful. Starting with learning objectives bullet points, the author guides the reader through the content, then wraps up each chapter with three main bullet point "Things You Should Know." The text lends itself to note taking and information retention. Overall, a good text that will be useful to clinicians working with end of life patients, as well as a helpful adjunct for those in the healthcare realm (long term care, acute care, ethics committee, etc.) to supplement their understanding of the issues.

Reviewed by Tina Davis, Health Faculty, Lane Community College on 8/21/16

This book is very comprehensive in its coverage of the topics of nursing at the end of life. And although the book does not include a separate index or glossary, it does provide plenty of terms and definitions within the text in a thoughtful and... read more

I found the accuracy of this book to be excellent. With the exception of one small error of two words joined together, I found no other errors. And the inclusion of various perspectives provides an unbiased view of nursing in this context.

The relevance to today's nursing field and hospice care is extremely up-to-date. Having experienced my mother's and father's hospice care at different times within the last six years, I found the advice and information affirming and relevent. Obsolescence is easily avoided with supplementing information when it is necessary. The personal experiences and examples are timeless.

The terms were clearly defined and the examples provided the helpful context. The prose was very accessible and easy to follow and enjoyable to read without being too wordy or technical. For example, p. 60 clearly gives a thorough description of the classifications of pain and differentiating between the mechanisms and temporal patterns.

Each chapter is nicely framed, beginning with the objectives and moving to an introduction and the main ideas, then finishing with "what you should know." This framework provided an easy-to-follow pattern.

The book's modularity is wonderful. The three main parts I. Anticipation II. In The Moment and III. Afterwards provides structure of the individual chapters and their focus. This allows instructors to easily assign readings in individual sections. And the subheadings within the chapters are very useful.

The organization of the book showed topics divided into a simple sequence related to the care of the patient. The three major sections clearly follow the sequence related to the care of the patient. The chapters within the sections are logically divided and clearly presented. The subheadings within the chapters also makes it easy to find individual topics. And even though this book may target nurses, it is organized in a useful fashion for the patient and family member as well.

The figures and tables are nicely formatted and easy-to-read. The Models of Care (p. 39) figures were a bit confusing at first but the explanation in the text following the figures was provided and made it more clear. The tables provided easy-to-reference guides for such areas of questions to ask the patient as well as religious beliefs about death and dying.

I found no grammar errors and the language used corresponded to the nursing field but also provided concrete examples for the lay person.

The book mentioned consideration of different groups of people with its definition of 'diversity' on p. 109. It also provided different religious perspectives of death and dying in the chapter on Diversity and Dying. But more importantly the language and style of the book continually used phrasing of 'inclusiveness' and repeatedly cautioned the nurse to be aware of the care and communication with the patient and family so as not to offend or exclude anyone based on different cultural or ethnic backgrounds.

This book is a valuable resource for anyone, not just a nurse or caregiver, patient or family member of a patient. Its comprehensiveness and validity can be summed up with Susan Lowey's reminder about the importance of care a dying patient receives and how it may not be remembered by the nurse, but it will surely be remembered by the patient's family (p.94).

Part I. Anticipation

1. A Historical Overview of End-of-Life Care
2. Types and Variability within Illness Trajectories
3. Conceptual Frameworks Guiding Death & Dying
4. Models of Organized End-of-Life Care: Palliative Care vs. Hospice
5. Initiating Conversations about Goals of Care

Part II. In the Moment

6. Management of Pain and Physical Symptoms
7. Management of Emotional and Spiritual Distress
8. Ethical Concerns in End-of-Life Care
9. Care at the Time of Death
10. Nurse–Patient–Family Communication

Part III. Afterwards

11. Diversity in Dying: Death across Cultures
12. Grief and Bereavement

Ancillary Material

About the book.

Nursing Care at the End of Life: What Every Clinician Should Know should be an essential component of basic educational preparation for the professional registered nurse student. Recent studies show that only one in four nurses feel confident in caring for dying patients and their families and less than 2% of overall content in nursing textbooks is related to end-of-life care, despite the tremendous growth in palliative and end-of-life care programs across the country. The purpose of this textbook is to provide an indepth look at death and dying in this country, including the vital role of the nurse in assisting patients and families along the journey towards the end of life. There is an emphasis throughout the book on the simple, yet understated value of effective interpersonal communication between the patient and clinician. The text provides a basic foundation of understanding death and dying, including a brief historical examination of some main conceptual models associated with how patients cope with impending loss. An overview of illness trajectories and models of care, such as hospice and palliative care are discussed. Lastly, the latest evidence-based approaches for pain and symptom management, ethical concerns, cultural considerations, care at the time of death, and grief/bereavement are examined. The goal of this text is to foster the necessary skills for nurses to provide compassionate care to individuals who are nearing the end of life and their families. Every chapter contains a “What You Should Know” section which highlights and reinforces foundational concepts.

About the Contributors

Dr. Susan Lowey works with both juniors and seniors in the traditional Nursing program, teaching Community Health Nursing and Nursing Research at SUNY, Brockport. She earned her PhD in Health Practice Research from the University of Rochester and was awarded a Claire M. Fagin Fellowship from the Building Academic Geriatric Nursing Capacity Program for her post-doctoral work. Improving care at the end of life, with a particular focus on symptom management, is the focus of Dr. Lowey’s research. The majority of her clinical practice has been as a community health hospice nurse providing care for dying patients and their loved ones.

Dr. Lowey holds national certification as a board certified hospice and palliative care nurse (CHPN) through the National Board for Certification of Hospice and Palliative Nurses. In addition, she is a certified ELNEC (End-of-Life Nursing Education Consortium) trainer (Core and Geriatric). She is also an appointed member of the National Board for Certification of Hospice and Palliative Nurses Registered Nurse Examination Development Committee and holds another appointment as the ESPO Representative on the Membership Executive Committee through the Gerontological Society of America. Dr. Lowey also serves as one of the faculty representatives for Omicron Beta, Brockport’s Chapter of Sigma Theta Tau International Honor Society.

Contribute to this Page

Case Studies: End of Life

An 86-year-old female patient admitted to hospital due to an increasing inability to cope at home and recent fall in which she suffered a broken hip. She has previously been diagnosed with COPD, hypertension and increasing cognitive deficits. While in recovery in hospital, an abdominal mass has been found (malignancy suspected but not confirmed), she has had a decrease in her ability to care for herself, difficulty swallowing with increasing aspiration risk, early stages of renal failure and an exacerbation of her cognitive issues. The patient does not have a formal Advance Directive nor has she assigned a Power of Attorney. She has three daughters and one son who is a cardiologist and lives out of the province. The daughters have demanded that the patient be a full code, requested that transfer be made to ICU with a PEG tube placed and dialysis started should it be required. The son phoned you over the weekend and stated that given his mothers age and complex medical situation he expects that she would be provided symptom management and comfort care but that no aggressive measures should be undertaken to interfere with the natural decline and progression of his mother’s diseases. He has requested regular updates regarding her status and any interventions or treatments proposed.

What are some of the ethical issues in this case?

Does ‘increasing cognitive defects’ = lack of capacity?
Are any ethical principles in conflict? Autonomy? Beneficence? Nonmaleficence?
Can an SDM demand treatment?
Who is responsible for proposing a plan of care?

Mr. Parker is an 88-year-old resident of your LTC home with end-stage Alzheimer’s. He is wheelchair bound and spends most of his days sleeping in his wheelchair near a window facing the garden. He needs to be spoon fed but has recently started to refuse to eat. Mr. Parker has three children, one of whom is very involved in the care of her father. The team approaches the daughter about her father refusing to eat, and feels that his refusal is legitimate. Thus, they propose changing the plan of care to palliation. The daughter absolutely refuses, claiming that “you cannot kill my father, I want everything done to keep him living!”

Do we know whether the resident is capable to make his own health care decisions?
Are there any known wishes from Mr. Parker? What would he want? What are his values?
Is his daughter the substitute decision-maker? Can she, in this role, demand treatment and expect that you comply?

Mrs. Beaudoin, who is 97 years old, was admitted to your LTC facility 6 years ago. Shortly after becoming a resident, she suffered a cardiac arrest and was found to be unresponsive by the staff; CPR was initiated for a total of 20 minutes prior to return of spontaneous circulation. She has an advanced directive stating that she agrees to “transfer to an acute care facility”, but other options, such as CPR and intubation, were not explicitly addressed in this document. She has no formal Power of Attorney.

Initially, Mrs. Beaudoin had lived at your facility watching TV for most of the day. She was wheelchair bound and required assistance with most activities of daily living (ADLs). Her husband lives at your facility with her and is quite frail with moderate dementia. Mrs. Beaudoin is frequently visited by her large extended family, which comprises 4 children and 5 grandchildren. She is known to have cancer throughout much of her body, moderate dementia, a very bad heart, and type-2 diabetes.

After her cardiac arrest and a short stay in the Hospital ICU, Mrs. Beaudoin is brought back to your facility able to breathe on her own, but with a moderate -severe brain injury caused by lack of oxygen after her cardiac arrest; this has left her unable to communicate in any meaningful way with others. She is receiving thickened fluids as her source of nutrition and hydration, but is only able to consume about half of the calories that would be needed to keep her at her current weight. Unfortunately her health begins to decline further shortly after returning.

The team decides to hold a family conference with the resident’s children, and proposes a plan of treatment that would focus on comfort care only, excluding CPR if needed again. The patient’s eldest daughter does not agree and states that her mother is “a fighter” and wanted to live to be 100 years old so that she could receive a letter from the Queen. The daughter asks that her mother be transferred back to the acute care hospital to receive the care of “experts” and so that she could be seen by a surgeon for surgery and chemotherapy for her cancer.

The treating physician discusses the case with the intensivist on call at the hospital over the telephone. The intensivist agrees that the prognosis is extremely poor and likely the resident would not benefit from further invasive treatment. The intensivist at TOH holds a family conference with the family and team at the LTC home over the telephone. He identifies himself as an expert in the field. The older daughter, reiterates their requests to the intensivist.

Who is the appropriate substitute decision-maker (SDM) in this case?
If there is more than one SDM, what should you do if they disagree?
Because we know Mrs. Beaudoin’s desire to live to be 100, must we ensure that “everything is done” in an attempt to prolong her life?

Mrs. Green, a 75-year-old patient with renal failure, currently on dialysis, who also has COPD, moderate dementia, diabetes and a new diagnosis of stage one breast cancer. There is also a past history of depression according to the family. She has been admitted to your ICU after falling down her stairs at home and is in critical condition with multiple fractures to her hip, ribs, wrists and neck. Mrs. Green does not have the capacity to make her own medical decisions and has recently started to refuse eating. Upon discussion with GI Specialists, the team agrees that the patient is not an appropriate candidate for a PEG (feeding) tube. The patient’s daughter, who is her POA, insists that the you proceed with the placement of the PEG, stating that if the tube is not placed she will contact her lawyer and proceed with legal action against the physician and hospital.

Do we know the patient’s wishes, or values?
Will the fact that the team feels the patient is not medically appropriate (considering risks, benefits, and likelihood of success) for a PEG tube be the deciding factor? That is, can the daughter demand the PEG tube and expect that the team provides it?

Mr. Wilson, a 51 y.o. male patient, is admitted to the Intensive Care Unit in critical condition after a motor vehicle accident. He presented unconscious and is therefore unable to make his own medical decisions. The family of this patient provided a detailed formal advance directive which indicated that in the event of a traumatic injury such as this one, where the outcome is uncertain, the patient would consent to aggressive medical intervention in an attempt to stabilize and determine the severity of his injury. Life-sustaining interventions were therefore pursued.

After a myriad of test and a set of neurologic assessments were performed, it was determined that an anoxic brain injury occurred and it was not clear whether the patient would ever regain consciousness. The team needed some time to clearly establish a diagnosis, and the family members were kept informed of any progress that was made.

Several weeks passed as the patient stabilized, and the health care team was finally confident that the patient had met the criteria for being in a Persistent Vegetative State, a diagnosis that was presented to the family. According to the advance directive, if the patient were ever in a situation where their continued existence would be in such a state, he would want all life-sustaining intervention withdrawn, and be allowed to die. The family (spouse is no longer in the picture, 18 y.o. daughter, 20 y.o daughter, and 14 y.o. son) are presented with this formal diagnosis of PVS and are willing to continue to assume the responsibility of SDMs. The 14 y.o. son is adamant that his father is a ‘fighter’ and demands the team continue to ‘do everything possible’, and provide the most aggressive care they can. The 18 y.o. daughter agrees with the son, but the 20 y.o. daughter wants to respect her father’s wishes and refuse further life-sustaining measures.

Who is(are) the designated SDM(s)?
Who do we listen to when they disagree?
Can the SDM(s) consent to a decision that would mean the death of the patient?

A 75-year-old healthy male was working on the roof of his house when he slipped and fell 10 ft. to the ground. He was knocked unconscious. When the paramedics arrived he was awake but confused. His vital signs were stable (e.g., Glasgow Coma Scale [GCS] score of 14). He was immobilized with a C-collar and backboard and taken to the ED. Shortly after arrival in the ED he became more confused, then sleepy. His GCS score decreased from 14 to 10. The attending emergency physician was concerned that perhaps the patient had a significant head injury and was in the process of arranging for a CT scan when the patient’s wife arrived. The patient’s condition continued to deteriorate, to a GCS score of 8. The emergency physician prepared to intubate him, but when she discussed this with the patient’s wife, the wife became upset and stated that her husband had a “living will,” which specifies that, if he became critically ill, he would not want any resuscitative interventions, including intubation.

*From: Pauls, M. et al. (2002). Ethics in the Trenches: preparing for ethical challenges in the emergency department. CJEM, 4:1, Pg. 45.

Was the patient adequately informed when they declared their wishes? Did they put these wishes into a particular context? That is, were they intended for reversible, or irreversible illness?
Is the patient’s wife required to make a decision in the best interests of the patient? Who decides what is ‘best’?

A 90 year old female, Mrs. Ruth, from home with her daughter, is admitted to hospital after sustaining a hip fracture. She has a history of chronic obstructive pulmonary disease on home oxygen and moderate to severe aortic stenosis. (Obstruction of blood flow through part of the heart) She undergoes urgent hemiarthroplasty (hip surgery) with an uneventful operative course.

The patient and her family are of Jewish background. The patient’s daughter is her primary caregiver and has financial power-of-attorney, but it is not known whether she has formal power of attorney for personal care. Concerns have been raised to the ICU team about the possibility of elder abuse in the home by the patient’s daughter.

Unfortunately, on postoperative day 4, the patient develops delirium with respiratory failure secondary to hospital acquired pneumonia and pulmonary edema. (Fluid in the lungs) Her goals of care were not assessed pre-operatively. She is admitted to the ICU for non-invasive positive pressure ventilation for 48 hours, and then deteriorates and is intubated. After 48 hours of ventilation, it was determined that due to the severity of her underlying cardio-pulmonary status (COPD and aortic stenosis), ventilator weaning would be difficult and further ventilation would be futile.

The patient’s daughter is insistent on continuing all forms of life support, including mechanical ventilation and even extracorporeal membranous oxygenation (does the work of the lungs) if indicated. However, the Mrs Ruth’s delirium clears within the next 24 hours of intubation, and she is now competent, although still mechanically ventilated. She communicated to the ICU team that she preferred 1-way extubation (removal of the ventilator) and comfort care. This was communicated in writing to the ICU team, and was consistent over time with other care providers. The patient went as far to demand the extubation over the next hour, which was felt to be reasonable by the ICU team.

The patient’s daughter was informed of this decision, and stated that she could not come to the hospital for 2 hours, and in the meantime, that the patient must remain intubated.

At this point, the ICU team concurred with the patient’s wishes, and extubated her before her daughter was able to come to the hospital.

The daughter was angry at the team’s decision, and requested that the patient be re-intubated if she deteriorated. When the daughter arrived at the hospital, the patient and daughter were able to converse, and the patient then agreed to re-intubation if she deteriorated.

Who should make decisions in this situation? Should the ICU team have extubated the patient?
Do religious beliefs constitute a justification for demanding treatment when it is not indicated?
Does the change in the patient’s decision mean that she lacked the capacity to make the decision in the first place, or that she was not well informed?

A 65 year-old female patient was admitted to hospital in mid-July with a diagnosis of Metastatic Stomach Cancer and for not being able to meet her caloric intake at home. This patient is married, with three adult children (two in town, one in a different city, 6 hours away). She is a very proud and attentive grandma to two grandchildren, her own mother is still alive, and she has four siblings all living in Montreal. This patient has been followed in Montreal by an Oncologist for the past 3 years. 80% of her stomach was removed, and she currently has a CADD pump for pain – a small pump designed to deliver medication when patient’s are up and about. In developing a treatment plan with this patient, her physician first considered two options: 1) Peg tube – This was not considered medically appropriate because of the significant risks involved, or 2) Naso-Gastric tube – This was not an acceptable option, according to the patient, because of the risks involved and impact on her quality of life.

At this point Total Parenteral Nutrition (TPN) was initiated as the only appropriate option to fulfil the patient’s nutritional needs. TPN is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth.

The patient remained in hospital and received TPN, with the goal of receiving home TPN through the local home-care provider. A referral was made for this home service, but due to the short life expectancy of the patient, she did not meet the required criteria and was not added to the waiting list. Despite this the patient’s goals remained consistent: enjoy an acceptable quality of life, be with and see her grand children, and be able to go home so that she can spend her final days with her family.

Without having more information, can we know if the process for assessing home-TPN eligibility is fair?
Without knowing that TPN would not be provided at home, was this patient fully informed in making a decision to consent to the initial TPN in hospital? That is, would her decision to initially pursue it have changed, if she knew that she would be required to receive it in hospital?

The patient, Mr. Ramsey, is a 97-year-old man who lives alone. His son lives in an apartment upstairs and visits almost daily. Both the son and daughter of this patient are designated as Power of Attorney for personal care. Past medical history included atrial fibrillation, chronic heart failure, COPD, and deafness and visual impairment for which, a communication board is normally used. Mr. Ramsey came to the emergency department with fever and cough; admitted with chronic heart failure in June of last year. A chest x-ray was performed and Mr. Ramsey was put on antibiotic treatment; two weeks later an additional chest x-ray showed marked improvement

At this juncture Mr. Ramsey’s family noted that he was no longer talking, unable to eat or weight bear on his right side. A CT scan initially showed nothing, but 2 days later a stroke was found in the left brain. Speech-language pathology was asked to see the patient that day.

The SLP assessment revealed the following:

Patient was essentially non-verbal, he could not use communication board from home, and he had weakness on the right side of his body.
The patient’s son and/or daughter were usually present during assessment.
With regard to swallowing, the patient had a poor arousal level, and SLP was unable to assess swallowing safely. Mr. Ramsey had not had food or liquids by mouth (NPO) for three days, however, he was on IV fluids.

With the above findings, SLP recommended the following:

That Mr. Ramsey remain NPO with IV fluids, and introduced to the family the potential for tube feeding. It was noted that this is considered Best Practice for Stroke if a patient is NPO after 48 hours. Because Mr. Ramsey was now NPO for three days, and due to the severity of the swallowing problem (dysphagia), SLP also informed the family that NG (nasogastric) feeding was going to be recommended to the patient’s physician as an option. SLP encouraged the daughter, who was present at the time of the SLP assessment, to discuss with her brother whether a feeding tube would be something their father would want and to let the doctor know. These recommendations were communicated to the doctor that day at rounds.

After rounds the following day, the patient’s son came to speak to SLP and the physician about feeding tubes, and told the doctor that they would like to consent to the NG that was proposed. The doctor informed the son that it was too late in the day to get a surgical consult, so a decision made to wait.

The events that followed:

Day 4 – SLP asked to re-evaluate the patient, no change in recommendation.
Day 5 – Insertion of NG was deferred, and doctor was to discuss with family.
Day 6 – SLP again recommended NG; doctor’s note to discuss patient’s poor prognosis with family.
Day 9 – SLP was again asked to re-evaluate. Patient was alert, still severe communication difficulty but able to swallow sips of water only with some difficulty. Made recommendation to doctor to keep Patient NPO, recommended NG while continuing to work with Patient to increase his oral intake
Day 10 – At rounds, a discussion of day 9 events was raised, and doctor requested family meeting be arranged. A meeting was arranged for day 11. The patient’s daughter wrote her consent for NG in the doctor’s progress notes of chart.
Day 11 – Doctor first attempt at NG insertion, but was unable; surgeon was notified but did not come that evening; Patient’s condition worsened.
Patient’s son called the unit, and a nurse informed him of his father’s condition. The son agreed to have the doctor on call contacted, and both the son and daughter agreed to make Patient comfort care only.
Was the standard of care met with apparent delays in treatment?
Was a communication failure responsible for the apparent delays?
What steps can be taken to ensure and encourage providers to have difficult conversations, especially at the end of life?

73-year-old female admitted to hospital with aspiration pneumonia and sepsis. Past medical history of multiple CVA’s, PEG tube feeding, multiple pressure ulcers. Patient able to open eyes but not able to follow any commands or respond verbally. Patient came to hospital from home with her wife. On admission, the wife was adamant that the patient be a full code. Wife seemed to be unclear regarding patient’s current medical/functional condition, and the health care team felt that due to unrealistic expectations of the wife, the patient was suffering. The team was struggling with the goals of care that were demanded. Goals of care were only changed when a new physician took over the care of the patient, and was willing to intervene.

Must the physician/health care team acquiesce to all demands by a substitute decision-maker? What were the reasons she provided for wanting “full code”?
What would the patient want in this case if she could tell the team? What would it mean to support her wishes?
What reasons were given by the first physician to not make the patient full code? And from the second physician for agreeing to full code?

Nurses' moral distress in end-of-life care: A qualitative study

Affiliations.

1 9372IRCCS San Raffaele Scientific Institute, Italy.
2 18985Vita-Salute San Raffaele University, Italy; Tor Vergata University of Rome, Italy.
3 9338ASST Grande Ospedale Metropolitano Niguarda, Italy.
4 9268IRCCS Humanitas Institute, Italy.
5 Vita-Salute San Raffaele University, Italy.
6 18985Vita-Salute San Raffaele University, Italy.
PMID: 33267730
DOI: 10.1177/0969733020964859

Background: Moral distress is a neglected issue in most palliative education programmes, and research has largely focused on this phenomenon as an occupational problem for nursing staff.

Research question: The primary outcome of this study was to explore the causes of morally distressing events, feelings experienced by nurses and coping strategies utilised by a nursing population at an Italian teaching hospital. A secondary outcome of this qualitative study was to analyse whether palliative care or end-of-life care education may reduce morally distressing events.

Research design: A hermeneutic-phenomenological qualitative study was performed.

Participants and research context: Participants were recruited through snowball sampling. The interviews were conducted and recorded by one interviewer and transcribed verbatim.

Ethical considerations: Ethical approval was obtained from the Institutional Review Hospital Board.

Findings: Six main themes emerged from the interview analyses: (1) the causes of moral distress; (2) feelings and emotions experienced during morally distressing events; (3) factors that affect the experience of moral distress; (4) strategies for coping with moral distress; (5) recovering from morally distressing events; and (6) end-of-life accompaniment. Varying opinions regarding the usefulness of palliative care education existed. Some nurses stated that participation in end-of-life courses did not help them cope with morally distressing events in the ward, and they believe that existing courses should be strengthened and better structured.

Discussion: In this study, moral distress was often associated with poor communication or a lack of communication between healthcare professionals and the patients and/or their relatives and with the inability to satisfy the patients' last requests. According to our findings, the concept of 'good' end-of-life accompaniment was extremely important to our sample for the prevention of morally distressing events.

Conclusion: Nurses who work in the onco-haematological setting frequently experience moral distress. Determining the causes of moral distress at early stages is of paramount importance for finding a solution.

Keywords: End-of-life; moral distress; nursing staff; psychological stress; qualitative study.

Adaptation, Psychological
Qualitative Research
Stress, Psychological / etiology
Terminal Care*

Cases on Ethics at the End of Life
Markkula Center for Applied Ethics
Focus Areas
Bioethics Resources
Bioethics Cases

A public guardian must make decisions for a 78 year-old woman with severe dementia, and multiple illnesses.

A physician has questions for a public guardian in charge of the medical care for a conserved patient.

A case study of an elderly Puerto Rican immigrant to the United States suffering from the effects of diabetes.

A case study of how cultural misunderstandings interfere with medical care for a cancer patient.

A case study raising issues of culturally competent health care for a Muslim woman.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Publications
Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

Advanced Search
Journal List
SAGE Open Med

Ethical considerations at the end-of-life care

Melahat akdeniz.

1 Department of Family Medicine, Faculty of Medicine, Akdeniz University Hospital, Akdeniz University, Antalya, Turkey

Bülent Yardımcı

2 Amerikan Hospital, Şişli/Istanbul, Turkey

Ethem Kavukcu

3 Department of Sports Medicine, Faculty of Medicine, Akdeniz University Hospital, Akdeniz University, Antalya, Turkey

The goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients’ desires. However, physicians face many ethical challenges in end-of-life care. Since the decisions to be made may concern patients’ family members and society as well as the patients, it is important to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Understanding the principles underlying biomedical ethics is important for physicians to solve the problems they face in end-of-life care. The main situations that create ethical difficulties for healthcare professionals are the decisions regarding resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, withholding and withdrawing treatments, euthanasia, and physician-assisted suicide. Five ethical principles guide healthcare professionals in the management of these situations.

Introduction

Advances in modern medicine and medical technologies have both prolonged life expectancies and changed the natural norms of death. Although many modern treatments and technologies do not cure chronic diseases, medical interventions such as artificial nutrition and respiratory support can prolong the lives of people by providing secondary support. 1 , 2 End-of-life care has become an increasingly important topic in modern medical practice. This process starts with the diagnosis of a fatal disease, and includes the dignity death that the patient desires and the post-death mourning period. 2 Death is an inevitable part of life. Many people at the end of life experience unnecessary difficulty and suffering. Patients’ family members, close friends and informal caregivers also experience a range of problems. They play very important roles in the end-of-life care of their loved ones before, during, and after death. 3

After hearing about a terminal diagnosis, the families of dying patients experience a period of high stress that can be manifested by anger, depression, interpersonal conflict, and psychosomatic problems. 3 , 4 Family members are also primer caregivers for the dying patient. They may feel hopelessness, anger, guilt, and powerlessness when they cannot relieve the suffering of their terminally ill family member. 4

From an ethical perspective, the patient rather than the family, proxy or physician makes decisions best about limiting treatment or treatments that do not provide cures but prolong life for a while. However, if the patient has lost the ability to make decisions, the family, the proxy health care or the physician must make a decision about the care to be provided to the patient. 4 , 5 Family members who feel sadness, fear, anxiety, and are stressed out because a loved one is terminally ill will have a hard time to make decisions. If they do not know their loved one’s preferences regarding end-of-life care, they cannot be sure about whether they can give the most appropriate decisions for the patient. This can increase the anxiety and stress of family members. Sometimes family members may have different preferences regarding the care. While some family members clearly and unambivalently want that “everything” is done to keep their loved one alive, others are unable to decide to limit treatment and may want the medical staff to make these decisions for them. In such a situation, the physicians will be in a difficult situation. 3 – 6

The goals of care for terminally ill patients are the alleviation of suffering, the optimization of quality of life until death occurs, and the provision of comfort in death. However, achieving these goals is not always easy. Because physicians, patients, and patients’ family members have to make decisions regarding treatment options such as whether to prolong a person’s life with the support of medical technologies or allow the natural death process to continue, they face various ethical dilemmas related to end-of-life care. 1 – 4 Understanding the principles underlying biomedical ethics is important for physicians and their patients to solve the problems they face in end-of-life care. The ethical principles are autonomy, beneficence, nonmaleficence, fidelity, and justice. 5 , 6

In this article, considerations regarding the application of ethical principles during end-of-life care are discussed.

Universal ethical principles

The ethical principles recognized universal are autonomy, beneficence, nonmaleficence, and justice. These “four principles” are common in Eastern and Western cultures, but their application and weight may differ. This article highlights the universally accepted features of these principles. The social and legal aspects that may affect the ethical principles in different cultures can be covered as a separate article.

Autonomy is considered a patient’s right to self-determination. Everyone has the right to decide what kind of care they should receive and to have those decisions respected. Respecting patient autonomy is one of the fundamental principles of medical ethics. 4 , 6 This principle emphasizes physicians’ protection of their patients’ right to self-determination, even for patients who have lost the ability to make decisions. This protection can be achieved by using advance directives (ADs) appropriately. 4 , 6

ADs are derived from the ethical principles of patient autonomy. They are oral and/or written instructions about the future medical care of a patient in the event he or she becomes unable to communicate, and loses the ability to make decisions for any reason. ADs completed by competent person ordinarily include living wills, health care proxies, and “do not resuscitate” (DNR) orders. 3 , 4 , 7 , 8 A living will is a written document in which a competent person provides instructions regarding health care preferences, and his or her preferences for medical interventions such as feeding tubes that can be applied to him or her in end-of-life care. A patient’s living will take effect when the patient loses his or her decision-making abilities. A health care proxy (also called health care agent or power of attorney for health care) is the person appointed by the patient to make decisions on the patient’s behalf when he or she loses the ability to make decision. A health care proxy is considered the legal representative of the patient in a situation of severe medical impairment. 4 , 7 , 8 The responsibility of the healthcare proxy is to decide what the patient would want, not what the proxy wants. 7 , 9

Up until age 18, the patient’s parents or legal guardians usually serve as their health care proxy. After the age of 18, they can legally appoint their own health care proxy. The proxies may be one of the family members or friends or another person. The proxies make decision about treatments, procedures, and life support. Even if their own wishes are different from the patient, the proxies must take into account the patient’s possible preferences, not their own or anyone else, when making decisions on behalf of the patient. 7 , 8 , 10

At the end of life, the priority of making decisions belongs to the patient. If the patient has lost the ability to make decisions, decisions are made according to the patient’s AD, if any. The proxy health care is second in decision-making on behalf of the patient. If no AD or proxy, the decision-making is up to the family members. If family members avoid making decisions, the healthcare team must make a decision. 7 , 8 , 10

ADs help ensure that patients receive the care they want and guide the patients’ family members in dealing with the decision-making burden. Another reason for ADs is to limit the use of expensive, invasive, and useless care not requested by patients. Researches show that ADs improve the quality of end-of-life care and reduce the burden of care without increasing mortality. 7 , 11

In many countries, the right of people to self-determination is a legal guarantee. Each patient’s “right to self-determination” requires informed consent in terms of medical intervention and treatment. A patient has both the “right to demand the termination of treatment” (e.g. the discontinuation of life support) and the “right to refuse treatment altogether”; the exercise of these rights is strictly dependent on the person. 4 , 5 AD can be updated yearly and/or prior to any hospitalization. 9

In many countries, the right of competent individuals to express their treatment preferences autonomously in end-of-life care should be met with ethical respect, taking into account the use of advanced treatments and the prognosis of their disease. However, this autonomy has some limitations. The decisions made by a patient should not harm him or her. It is important for healthcare providers to respect the autonomy of their patient and fulfill their duties to benefit their patients without harming them. 1 – 5 , 9

Beneficence requires physicians to defend the most useful intervention for a given patient. Often, patients’ wishes about end-of-life care are not expressed through ADs, and the patients’ health care providers and family members may not be aware of their wishes about end-of-life care. 2 , 9 , 10 If a patient is not capable of decision-making, or if the patient has not previously documented his or her wishes in the event he or she becomes terminally ill, the end-of-life decision is made by the patient’s physician as a result of consultations with the patient or the patient’s relatives or the patient’s health care proxy. 3 – 6 In this situation, the responsibility of the physician in the care of the dying patient should be to advocate the approaches that encourage the delivery of the best care available to the patient. 3

Nonmaleficence is the principle of refraining from causing unnecessary harm. This principle concerns a basic maxim of good medical care: Primum non nocere (i.e. first, do no harm). Although some of the medical interventions might cause pain or some harm, nonmaleficence refers to the moral justification behind why the harm is caused. Harm can be justified if the benefit of the medical intervention is greater than the harm to the patient and the intervention is not intended to harm the patient. 5 – 7 , 12

To comply with these principles of beneficence and nonmaleficence, healthcare professionals need to know their roles and responsibilities in end-of-life care. 4 , 5

The ethical principle of justice is about ensuring a fair distribution of health resources and requires impartiality in the delivery of health services. 5 – 7 , 12 Medical resources are often limited and should, therefore, be distributed fairly and equally. There is already a need to evaluate the allocation of advanced medical therapy to avoid unnecessary use of limited resources. Healthcare providers have an ethical obligation to advocate for fair and appropriate treatment of patients at the end of life. This can be achieved through good education and knowledge of improved treatment outcomes. 4 – 7

Fidelity principle requires physicians to be honest with their dying patient about the patients’ prognosis and possible consequences of patients’ disease. 5 – 7 , 12 Truth telling is fundamental to respecting autonomy. Most patients want to have full knowledge of their disease and its possible consequences, but this desire may decrease as they approach the end of their life. Some patients may not want information about their disease. 2 , 5 Physicians should be skilled in determining their patients’ preferences for information and, honestly yet sensitively, provide their patients with as much accurate information as the patients want. Having effective patient-centered communication skills helps physicians learn and meet the demands of their patients. 5 , 13

Healthcare professionals, especially physicians, should provide all the information about their patients’ condition when appropriate. They have a duty to provide detailed information to patients and, if necessary, to the patients’ decision-makers about advanced medical treatments that can be used during end-of-life care. 4 , 13 They can perform their duties by providing their patients with detailed information about the benefits, limitations, and disadvantages of these treatments. Even if a patient has the autonomy to choose his or her treatment, the physician should explain the results of all therapeutic interventions. 2 – 5 If the patient insists on a treatment that will not be beneficial or will or just prolong her or his life, the physician can withdraw from the patient’s care by explaining why the treatment will not benefit the patient, the possible damage the physician may cause to the patient, and how the provision of the treatment will lead to the unnecessary use of resources. The physician also has the duty to protect the patient’s life, but this task should not be confused with the use of unnecessary resources, and the patient should not be injured further by continuing useless or futile medical treatments. 1 , 4 , 5 In other cases, the benefit to the patients is determined only on the basis of the patients’ subjective judgment of well-being. Medically futile treatments and interventions are those that are highly unlikely to benefit the patient. 9

Medical futility is defined as a clinical action serving no useful purpose in attaining a specified goal for a given patient. 14 Futile medical care is care provided to a patient, although there is no hope of any benefit to the patient. 4 As a general rule, patients should be involved in deciding whether care is futile. In rare cases, it may not be favorable for the patients to participate in this discussion. 2 , 9 Futile and expensive treatments in end-of-life care increase the cost of healthcare and promote inequality in healthcare. Advanced technologies do not promise cures. The use of these technologies can sometimes harm the patient rather than benefit. Therefore, physicians should certainly consider the ethical value of the autonomy of their patients or his or her patients’ proxies, but they should also discuss possible damage from treatments, and how the use of unnecessary resources leads to an increase in healthcare costs. Physicians do not have to apply to useless or futile treatment to patients. 3 , 9 , 10 , 14

Decision-making during end-of-life care

In the end-of-life care of a patient, the decision to implement practices to prolong the patient’s life or to comfort the patient may be difficult for the physician, patient, family members, or health care proxy. The following topics relate to some situations where difficulty in decision-making regarding end-of-life care is encountered: 9

Cardiopulmonary resuscitation (CPR);
Mechanical ventilation (MV), extracorporeal membrane oxygenation (ECMO), and mechanical circulatory support (MCS);
Artificial nutrition and hydration (ANH);
Terminal sedation;
Withholding and withdrawing treatment;
Euthanasia and physician-assisted suicide (PAS).

Although CPR is valuable in the treatment of heart attacks and trauma, sometimes the use of CPR may not be appropriate for dying patients and may lead to complications and worsen the patients’ quality of life. For some terminally ill patients, CPR is an undesired intervention. The decision not to perform CPR on a dying patient can be difficult for healthcare personnel. The decision to administer CPR to a patient depends on many factors such as patient preferences, the estimated success rate, the risks of the procedure, and the perceived benefit. 4 , 12 , 15 A competent patient may not want to undergo CPR in the event of cardiopulmonary arrest. This decision is called the DNR decision. Despite this request, the patient’s family members may ask the physician to perform CPR. In this case, if the patient is conscious and has the ability to make decisions, the patient’s decision is taken into account. Physicians must learn the CPR demands of patients at risk of cardiopulmonary arrest. DNR decision can be considered for the following patients: 9 , 10 , 15 , 16

Patients who may not benefit from CPR;
Patients for whom CPR will cause permanent damage or loss of consciousness;
Patients with poor quality of life who are unlikely to recover after CPR.

Approximately 75% of dying patients experience difficulty breathing or dyspnea. This feeling can be scary for patients and those who witness it. In end-of-life care, mechanical ventilation is applied not to prolong the lives of patients but to reduce their anxiety and to allow them to sleep better and eat more comfortably. 4 , 9

MV, ECMO, and MCS are supportive therapies. 17 – 20 The decisions to deactivate these devices are made in a similar way. The principle of autonomy is pivotal in evaluating the refusal of treatment and the permissibility of life-ending interventions. If MV, ECMO, or MCS support does not provide any benefit to the patient or no longer meets its intended goals, or if the outcome is not optimal, or the quality of life is not acceptable according to the patient’s or family’s wishes, support can be terminated. The timing of the device separation should be chosen by the patient’s family members. 17 – 20

Nutrition and hydration are essential parts of human flourishing. ANH involves giving food and water to patients who are unconscious or unable to swallow. 9 , 21 , 22

Artificial nutrition can be given through enteral feeding by tube or parenteral feeding. Nutrition and hydration decisions are among the most emotionally and ethically challenging decisions in end-of-life care. Many medical associations suggest that feeding and hydration treatments are forms of palliative care that meet basic human needs and must be given to patients at the end of life. 9 , 12 , 16 , 23 In 1990, the US Supreme Court noted that ANH is not different from other life-sustaining treatments. Although to do so speeds up death, competent adults may refuse artificial nutrition and hydration. ANH may improve the survival and quality of life of some patients such as extreme short bowel syndrome, bulbar amyotrophic lateral sclerosis, and in the acute phase of some disease such as stroke or head injury. It may improve the nutritional status of patients with nutritional problems. However, the evidence for the benefits of ANH is insufficient. ANH is associated with considerable risks such as the aspiration pneumonia, diarrhea, and gastrointestinal discomfort. 23 , 24

In patients with advanced cancer, dehydration can cause symptoms such as fatigue, myoclonus, and delirium that impair quality of life, and sedation or agitation due to accumulation of active metabolites of opioids. However, the benefit of parenteral hydration in these patients is controversial. In a randomized controlled study, Bruera et al. 25 investigated the effect of parenteral hydration on quality of life and survival in cancer patients receiving hospice care. It was found that hydration at 1 L per day did not improve symptoms, quality of life, or survival compared with placebo. Johnston et al. conducted a study to determine factors associated with death after the percutaneous endoscopic gastrostomy (PEG) tube was inserted. In the study, 43% of the patients died within a week. Of these patients, 70% died because of respiratory disease. The expert panel considered that PEG tube insertion is futile in only 19% of the patients. 26

For these reasons, the benefits and possible harms of the intervention should be explained to the patient or to the other decision-makers in detail before making the ANH decision. If a patient is incompetent, his or her proxy decision-maker can refuse artificial feeding and hydration on behalf of the patient. 9 , 21 – 23

Terminal sedation is a medical intervention used in patients at the end of life, usually as a last effort to relieve suffering when death is inevitable. Sedatives are used for terminal sedation. 5 , 9 People have some concerns about terminal sedation because the treatment of an unconscious patient is sensitive and risky. The purpose of terminal sedation is not to cause or accelerate death but to alleviate pain that is unresponsive to other means. There are four criteria for evaluating a patient for terminal sedation. 5 , 9 According to the Center for Bioethics at the University of Minnesota, four criteria are required for a patient to be considered for terminal sedation. 5 , 9

The patient has a terminal illness.
Severe symptoms are present, the symptoms are not responsive to treatment, and the symptoms are intolerable to the patient.
A “do not resuscitate” order is in effect.
Death is imminent (hours to days).

Some medical interventions in end-of-life care can save or prolong a patient’s life. However, patients and their family members are often faced with decisions about when and if these treatments should be used or if the treatments should be withdrawn. 2 , 9 The terms withholding and withdrawing can be confused with each other. Withdrawing is a term used to mean that a life-sustaining intervention presently being given is stopped. Withholding is a term used to mean that life-sustaining treatment is not initiated or increased. 21 , 22

The decision to withhold or withdraw interventions or treatment is one of the difficult decisions in end-of-life care that causes ethical dilemmas. If a patient and physician agree that there is no benefit in continuing an intervention, the right action is withholding or withdrawing the interventions. However, the physician must be skilled to manage this discussion sensitively. For this, physicians must have patient-centered and family-oriented communication skills. Respect for the autonomy of a patient seeking to continue or initiate treatment should be questioned when it would lead to enormous harm, the unnecessary or unequal distribution of resources, or action requiring the physician to act illegally. 23 In most countries, the legal opinion is that patients cannot seek treatment that is not in their best interest and, that physicians should not strive to protect life at all costs. However, if there is doubt, the decision must be in favor of preserving life. All healthcare professionals should be able to define an ethical approach to making decisions about withholding and withdrawing treatment that takes into account the law, government guidance, evidentiary base, and available resources. 14 , 22 , 23 , 27

Physicians must be aware of their patients’ capacity, beliefs, and preferences, as well as their clinical condition. 2 , 9

For many decades, euthanasia and PAS have been discussed in the context of terminal care in modern societies. The ethics and legality of euthanasia and PAS continue to be controversial. 28

Euthanasia is applied in two ways as active or passive euthanasia. In active euthanasia, a person (generally a physician) administers a medication, such as a sedative and neuromuscular relaxant, to intentionally end a patient’s life at the mentally competent patient’s explicit request. Passive euthanasia occurs when a patient suffers from an incurable disease and decides not to apply life-prolonging treatments, such as artificial nutrition or hydration. In PAS or physician-assisted death, a physician provides medication or a prescription to a patient at patient’s explicit request, with the understanding that the patient intends to use the medications to end his or her life. 28 – 30

From a global perspective, there are countries (or states) where euthanasia and PAS are accepted and legal and others where they are still offenses. In countries where euthanasia and PAS are legal, a physician has the right to refuse a patient’s request. 28

At the present time, active euthanasia is legal in five countries (Belgium, the Netherlands, Luxemburg, Canada, and Colombia), although the laws of these countries differ considerably regarding practices. Passive euthanasia is legal in 12 countries (Belgium, the Netherlands, Luxemburg, Switzerland, Germany, Austria, Norway, Sweden, Spain, Canada, Colombia; and Mexico, Argentina, and Chile). PAS is legal in seven countries (Belgium, the Netherlands, Luxemburg, Switzerland, Germany, Finland, Canada, and Japan). In the United States, active euthanasia is illegal, but PAS is legal in 10 states (Oregon, Washington, Vermont, California, Colorado, Washington, DC, Hawaii, New Jersey, Maine, and Montana). 30 – 32 In countries other than Belgium and the Netherlands, the right to euthanasia applies to individuals aged 18 and older. There is no age limit for euthanasia requests in Belgium. In the Netherlands, people aged 12 and older who meet the necessary conditions can request euthanasia. 30 , 31

Ethical decision-making in different healthcare settings

Different difficulties can be experienced when applying ethical principles in different healthcare settings where end-of-life care is provided.

Emergency departments (EDs) are settings where healthcare services are provided to terminally ill and seriously ill patients, as well as potentially treatable patients. The goal of healthcare services provided in EDs is to refer patients to an appropriate service after treating urgent problems and stabilizing the patients. EDs are not suitable environments in which to provide a dignified death process. 33 , 34 However, family members of dying patients can bring the patients to an ED when they feel incapable of managing the death process at home. 33

In EDs, decisions often need to be made in a short time. Emergency physicians face numerous challenges when managing the clinical care of patients at the end of life. The most important ethical problem faced by emergency physicians in end-of-life care is making ethical decisions on issues such as whether to perform resuscitation and continue life-sustaining treatment in cases where the patients are not competent to make decisions. 33 , 34

Emergency physicians aim to support life through all possible means unless an AD requests otherwise. The Royal College of Emergency Medicine published a best-practice guide for end-of-life care for adult patients in EDs. In the aforementioned guidelines, it is stated that “the best treatment option is the one that provides the most general benefit and is the least restrictive for the patient’s future choices, and patients and their families should be involved, wherever possible, in end-of-life care decisions.” 35

If a patient is unable to make his or her own decisions about health care and has an AD or has appointed a health care proxy, the decisions are based on these documents. In cases where there is no AD or appointed health care proxy, family members must decide. Physicians and family members or health care proxies sometimes may not agree on medical decisions. In these cases, physicians should act according to the decision of ethics committees or the laws of the country. 34 , 35

In pediatric EDs, most terminal patients lack decision-making capacity due to their age and medical condition. Decisions for a child should be made in the context of the child’s best interests. A determination of “best interests” involves weighing the benefits, burdens, and risks of treatment to achieve the best possible outcome for the child or adolescent. 36 – 39

In most countries such as the United States, United Kingdom, and Turkey, legal and medical decision-makers are the parents or legal guardians of the children. Generally, physicians and decision-makers on behalf of the child agree on end-of-life care decisions. However, sometimes there is conflict over decisions. If a child’s physician thinks that the family or legal guardian’s decision is not the best decision for the child, the physician can apply to ethics committees or courts. 36 – 39

Most dying pediatric patients receive care in hospitals, often in pediatric ICUs. Decisions regarding the end-of-life care of children are made in accordance with ethical principles and the laws of the relevant country. 36 , 37

Children under the age of 18 years are not legally considered competent to make that decision. However, in some countries such as the United States, pregnant women, married women, children living independently and away from their families, and financially independent children are considered to be able to make their own decisions. It is accepted that children above the age of 6 should be informed about decisions regarding their end-of-life care and that their preferences should be taken into account in the decision-making process, even if they cannot make their own care decisions. 35 – 39

Pediatricians sometimes face ethical dilemmas and difficult decisions in the care of children at the end of life. 37 , 40 Often, parents agree with the advice of physicians. However, an ethical dilemma can arise when there is a disagreement about the care plan. Ethical dilemmas can arise in deciding whether to administer narcotics for the cessation and/or withdrawal of medical interventions and in decisions regarding the accuracy and administration of narcotics for pain and symptom management. Most difficult situations can be managed with effective communication within the medical team or between the team and the patient/family. 38 Providing families and children with clearly explained and understandable verbal and written information specific to the children’s individual circumstances and their management can enable the families and children to better assess the situation. When difficult decisions need to be made about end-of-life care, giving children and their parents or legal guardians sufficient time and opportunities for discussions can also help resolve problems. 39 – 41

Parental decisions are not absolute. In circumstances where a parent makes a decision that could potentially harm a child, the physician can seek assistance from the institution’s ethics committee if the physician is concerned that the decision is not in the best interests of the child. Going to court can be an option of last resort when the medical team believes that a family’s decisions are reaching the point of being harmful to the child. 15 , 37 , 38

Elderly individuals represent the most rapidly growing segment of the population. Many chronic, life-limiting diseases such as advanced cancer, neurodegenerative diseases, and organ or system failure occur in elderly individuals. In addition, many elderly people have cognitive impairments such as dementia that affect decision-making. 42 – 44

Several ethical issues arise in the care of elderly patients at the end of life. There is much common ground based on the application of the four major principles of medical ethics: nonmaleficence, beneficence, autonomy, and justice. The goal of end-of-life care for elderly people is to improve their quality of life, helping them cope with illness, disability, death, and an honorable death process. These goals should be achieved by considering these ethical principles. 41 – 44

Physicians who provide care to elderly patients with a terminal illness should discuss the goals of care with the patients and family surrogate decision-makers. This discussion provides valuable information to the physicians and the patients’ decision-makers about what kind of care the patients want to receive at the end of life and what kind of death they prefer. Physicians should be encouraged to advance life planning for their elderly patients. 4 , 41 – 44

There are some features of ethical decision-making in ICUs. It is important for physicians working in ICUs to distinguish between treatable patients and those in the terminal period. In the care of a dying patient in an ICU, after the emergency situations are resolved, the patient’s care should be reevaluated. In this planning, decisions are made for the next phase of care of the patient. Ideally, this decision-making process is a shared decision-making model in which the doctors and patient or the patient’s proxy share information with each other and participate jointly in the decision-making process. 45 – 48

It is very important to empower the family and, if possible, the patient to participate in this decision. The patient and his or her family members/care proxy should be assisted in making decisions through explanations of the patient’s condition, possible interventions, and the results of those interventions in clear and understandable language. The ethical principle of autonomy supports the legal requirement for informed consent. 45 – 48

Physicians working in ICUs may face ethical dilemmas in decision-making regarding end-of-life care. They should make end-of-life care decisions according to the basic ethical principles (autonomy, beneficence, nonmaleficence, and justice). 41 According to the autonomy principle, patients have decision-making priority. However, many critically ill patients in ICUs do not have the capacity to make decisions. In such cases, if the patients have an AD or health care proxy, decisions are made according to those documents. If there are no such documents, the decision-making falls on the patients’ family members. When there are disagreements between family members, a family meeting can be helpful. 46 – 48

Physicians sometimes think that the decisions made by family members are not the most appropriate decisions for the patients. In cases of conflict between intensive care teams and family members, assistance from institutional ethics committees may be sought. 48 In a study by Schneiderman et al., 49 it was found that ethical consultations help resolve conflicts.

Palliative care and hospice care

Most people express a preference for dying at home. 50 However, various factors may make it impossible to deliver quality end-of-life care in the patient’s home. In recent years, palliative care and hospice programs that provide care for terminal patients have gradually improved.

The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. 51

Palliative care is given by an interdisciplinary team. In its report “Dying in America,” the American Medical Institute (Institute of Medicine (IOM)) emphasizes that all physicians in disciplines and specialties that care for people with terminal disease should be competent in basic palliative care skills, such as person-centered and family-oriented communication skills, professional cooperation, and symptom management. 52

Palliative care, including hospice, as an established approach providing the best possible quality of life for people of all ages who have an advanced serious illness or are likely approaching death. The main goal is to prevent and relieve suffering, to improve quality of life for both the patient and the family. 43 , 52 Control of symptoms such as pain, shortness of breath, nausea, constipation, anorexia, insomnia, anxiety, depression, and confusion should be addressed with the patient and family. 53 , 54

Because psychological, spiritual, and social factors may all affect the perception of symptoms, psychosocial distress, spiritual issues, and practical needs should be handled appropriately according to the preferences of patients and their families. 55 In palliative care, the care plan is determined according to the goals of the patient and family with the guidance of the multidisciplinary health care team, and is regularly reviewed. 53 , 55

Hospice is an essential approach to address the palliative care needs of patients with limited life expectancy and their families. Hospices are an important component of palliative care. Hospice care focuses primarily on symptom control and psychologic and spiritual support for dying patients and their families. 43 , 52 Hospice teams’ goal is to make the patient as comfortable as possible in the end of life. Hospice can be provided in any setting, including patients’ homes, nursing homes, hospitals, and a separate hospice facility. 55 , 56 In addition to patient care, the interdisciplinary team provides support to the primary caregiver or family member who is responsible for the majority of the patient care. 55 , 57 Hospice team may provide emotional and spiritual support, social services, nutrition counseling, and grief counseling for the patients and their families.

Studies have shown that palliative care results in improved quality of life with less acute health care use and in moderately lower symptom burden compared to routine care. 58 A meta-analysis on hospice care have also shown that hospice care increases the quality of life and life expectancy for terminal ill patients. 59 Therefore, health care providers who will care for terminal patients must have primary palliative care skills. In addition, for all patients to benefit, hospice care must be covered by health insurance in all countries.

All ethical principles should also be taken into account in palliative care delivery. However, the most considered ethical principles are beneficence and nonmaleficence. Beneficence emphasizes on relieving the symptoms that impair the quality of life of a dying person. Nonmaleficence emphasizes on relieving the symptoms that can actually harm the patient. 56

In palliative care setting, the end-of-life decision mentioned above (CPR, MV, ANH, terminal sedation, withholding and withdrawing treatment) may need to be taken. The application of the ethical principles in palliative decision-making is required to achieve a comfortable end-of-life period for patients. 53 , 56

The goal of end-of-life care is to prevent or relieve suffering as much as possible while respecting the desires of dying patients. However, physicians face many ethical challenges in end-of-life care. Since the decisions to be made may concern patients’ family members and society as well as the patients, it is important to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Open communication and shared decision-making among health care providers, patients, and families would avoid many of the ethical dilemmas at end-of-life care.

Limitations

There are different beliefs, traditions, and legal regulations that affect the application of ethical principles in different societies. This article discusses universal ethical principles accepted in end-of-life care; however, the application of ethical principles in different societies is not mentioned. In addition, the role of different healthcare professionals in end-of-life care has not been discussed.

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) received no financial support for the research, authorship, and/or publication of this article.

An external file that holds a picture, illustration, etc.
Object name is 10.1177_20503121211000918-img1.jpg

Open access
Published: 09 July 2021

Case study analysis of end of life care development in the Chinese cultural context of Macao: a social movement perspective

Kuai In Tam 1 ,
Elaine Haycock-Stuart 2 &
Sarah J. Rhynas 3

BMC Palliative Care volume 20 , Article number: 105 ( 2021 ) Cite this article

2726 Accesses

2 Citations

2 Altmetric

Metrics details

The modern hospice movement is often recognised as a social movement. However, such understanding is primarily based on historic reflection and this approach has lacked theoretical exploration. There is a lack of systematic examination of the modern hospice movement by way of social movement theories.

Focusing on the Chinese socio-cultural context of Macao, this study aimed to understand the EoLC movement by applying the social movement theory, the Framing Perspective, as proposed by Snow and Benford in 1988.

A case study approach was conducted. Semi-structured interviews were held between 2012 and 2013, with pioneers (n = 11) of the EoLC in Macao. Thematic analysis was adopted to analyse the interviews.

The Framing Perspective analysis illuminated that there was both growth and stagnation of the EoLC movement. Three themes emerged: 1) the suffering of people at the end of their lives was considered as a social problem needed to be addressed urgently, 2) the incoherent EoLC strategies developed by pioneers indicated the lack of internal ideological cohesion within the movement, 3) external constraints contributed to the stagnation of the movement.

Conclusions

The EoLC development in Macao can be understood as a social movement. The Framing Perspective provided a theoretical way to understand the emergence of EoLC; offering a novel perspective to conceptualise the modern hospice movement. This sociological and theoretical lens opened up new ways for future research to study the emergence of EoLC in different socio-cultural contexts.

Peer Review reports

While the modern hospice movement is acknowledged and referred to as a social movement [ 1 ], there is a lack of exploration of the emergence of end of life care (EoLC] from a theoretical, social movement perspective. The conceptualisation of the modern hospice movement mainly concerns the establishment of the dissemination of the principles of hospice care, and the establishment of hospices and related EoLC services [ 2 , 3 , 4 , 5 , 6 , 7 ]. Several studies have investigated the development of EoLC in countries with a range of different socio-cultural backgrounds [ 8 , 9 , 10 , 11 , 12 , 13 ]. However, most available literature discussed issues pertinent to the practical and conceptual introduction of EoLC [ 8 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 ] and there is a notable lack of discussion on the theoretical underpinning of EoLC initiatives. While studies by Hodges and Read [ 25 ] and Elsey [ 26 ] have utilised theoretical constructs to examine the hospice movement in the United Kingdom and South Australia, the focus of their studies was on the institutionalisation of hospice care within the area of cancer care [ 25 ], and the increasing secularisation of the hospice movement as it has been driven by professionals, establishing hospice and palliative care as a knowledge-based discipline [ 26 ]. To a certain extent, these studies have offered a theoretical examination of the hospice movement, however, they primarily examined the institutional structure of hospice care, and the broader shift of the hospice movement to a professionally driven discipline. There is still a lack of systematic examination of the emergence of EoLC as a social movement, especially by way of a social movement theory. Targeting this knowledge gap, this study has adopted a social movement theory, the Framing Perspective, to examine data to analyse the emergence and stagnation of EoLC movement in the Chines socio-cultural context of Macao.

End of life care in Macao

The beginning of Macao’s EoLC was marked by the establishment of the Association of Friends of Charity of Macao (AFCM) in 1996, offering free health education, counselling and financial advice to those affected by cancer [ 27 ]. The year 2000 marked the establishment of a community home visit service, the Peace and Hope Centre, and the first hospice, the Hospice and Palliative Care Centre (HPCC). The Peace and Hope Centre provided non-clinical home visits, encompassing spiritual (Christian-based) and psychological support for people affected by terminal cancer [ 28 ]. HPCC remained the only clinical palliative and EoLC service in Macao until 2019, when the Macao government hospital established an inpatient palliative care ward. Reflecting on the EoLC development in Macao, it has a substantial time gap (19 years) between the establishment of the first and last clinical service; furthermore, there are still no records of any professional bodies being devoted to aspects of EoLC in Macao, nor any legislation or professional guidelines specifically relevant to EoLC related issues. Macao was not included in the quality of death index published by the Economist Intelligence Unit [ 29 ] and no assessment has thus far been found that dealt with an evaluation of the quality of EoLC offered in Macao.

The current study therefore aimed to address the lack of empirical evidence on the analysis of the modern hospice movement by way of any theoretical perspective informed by, or based upon, the concept of social movement, and the lack of research investigating the establishment of EoLC by using the perspective of social movement in the socio-cultural context of Macao. Integrating the two enquiries, the study aimed to understand the EoLC movement within the Chinese socio-cultural context of Macao, by applying the social movement theory, the Framing Perspective.

Study design

The qualitative case study model proffered by Robert Stake [ 30 , 31 , 32 ] was adopted in examining the emergence of EoLC in Macao, and developing a theoretical understanding of the EoLC establishment from a social movement perspective. The ‘EoLC within the context of Macao’ was determined as ‘the case’, in order to reinforce the focus of enquiry for the present study.

Participants and recruitment

Participants recruited for this study were pioneers, including initiators, developers and nurse educators, who had been substantially involved in the establishment of EoLC in Macao. For the individuals who initiated the concept and the service of EoLC in Macao were identified as initiators/pioneers; for the individuals involved in the subsequent development of EoLC in Macao were identified as developers. Both initiators and developers were considered as the people best able to give insights to the phenomenon of the study. Inclusion of nurse educators was mainly because they were found to have substantially involved in introducing and developing EoLC education in Macao [ 33 , 34 , 35 ]. Participants of this study were therefore recruited from: i) the inpatient hospice, ii) the community EoLC service and iii) a nursing education sector, where Macao’s public promotion of the concept of EoLC and the introduction of palliative and EoLC first began. Six participants (two initiators, three nurse educators and a hospice developer) were approached and recruited for this study by way of purposive sampling. Five more potential participants were identified by snowball sampling. A total of 11 participants were recruited, with verbal and written informed consent being obtained from all participants.

Data collection

Semi-structured, in-depth interviews were conducted with the participants. In keeping the quality and relevance of the materials generated through interviews [ 30 , 36 ], a semi-structured interview guide with five open-ended questions oriented to the research aim, guiding the interview process and keeping focus on the subject was developed prior to the interview process. The open-ended questions were developed to allow the researcher to learn about participants’ professional backgrounds, to understand their experiences and interpretations regarding end of life (EoL) issues, and to learn about the trigger/motivation in pioneering/developing EoLC in Macao. The interview guide was developed in both Chinese and English (please refer to supplementary material for the English interview guide-Additional file 1 ), allowing the research to include participants with different language backgrounds. Whilst the interview guide kept the researcher focused on the research enquiry, the researcher used it only as a guide during each interview so allowing her to prompt and further explore new topics that emerged during the interviews. All but one of the interviews were conducted in Chinese, one interview was conducted in English. All interviews were transcribed verbatim. In order to maximise the validity, reliability and quality of data analysis, as suggested by Twinn [ 37 ], the researcher decided to base the data analysis on the Chinese transcripts. The analysis of the only English interview was conducted in English. Only interview segments of the Chinese transcriptions relevant to data analysis were translated into English for the purpose of presenting the research results. The researcher had consulted a bilingual colleague to crosscheck a few translated excerpts to ensure the accuracy of the translation [ 38 ]; the colleague confirmed translation to be accurate.

Data analysis

A thematic analysis approach [ 39 ] was adopted to structure the analytical process for the study. The process of data immersion during analysis facilitated the researcher to determine that, the Framing Perspective [ 40 , 41 , 42 ] was a suitable theoretical framework to examine the emergence of the EoLC in Macao, and to aid the development of a theoretical understanding of the EoLC movement in Macao. The computer-assisted data management software (QSR NVivo version 11) was used to manage and facilitate the analysis of the collected data.

Establishing the theoretical context of the study: the Framing Perspective

The Framing Perspective was first proposed by Snow, Rochford, Worden and Benford in their 1986 article: “Frame alignment processes, micromobilisation, and movement participation” [ 40 ]. In the article, the concept of ‘framing’ is presented as a theoretical extension of the work of frame analysis proposed by Erving Goffman in 1974, with a focus on the study of social movements [ 42 ]. Theorised by Goffman, a ‘frame’ is the definition of a situation one becomes subjectively involved in, signifying ‘a lore of understanding’, ‘an approach’ and ‘a perspective’ (p. 21) [ 43 ]. Further, the process of framing is a channel for individuals to ‘locate, perceive, identify and label’ (p. 21) [ 43 ] their experiences. Adopting the conceptualisation of framing as offered by Goffman, in the study of social movement, framing denotes an active and dynamic process of meaning construction; with such construction evolving on a constant basis [ 40 , 41 , 44 ]. Further developed from Goffman’s theory, Snow et al. [ 40 ] proposed the four frame alignment processes in the study of social movements: frame bridging, amplification, extension and transformation. These four alignment processes formed the foundation of the theoretical construct of the Framing Perspective on social movements suggested by Snow, Rochford, Worden and Benford [ 40 ]. Explained by these authors, the purpose for establishing the Framing Perspective was to address the lack of theoretical apparatus in the field of social movement study, by elucidating the process of movement recruitment, participation and conversion; i.e. the frame alignment processes [ 42 ].

In addition to the four frame alignment processes, Snow & Benford [ 41 ] also introduced the concept of three core framing tasks encompassing diagnostic framing, prognostic framing and motivational framing. The frame(s) constructed in these three framing tasks are those adhered to by social movement participants; stemming from these frames are actions in promoting frame alignment amongst wider audiences.

Taking into consideration of the lack of examination of the emergence of EoLC as a social movement, the researcher decided to consider a theoretical construct that would fit into the research enquiry, and to develop a theoretical understanding of EoLC as a social movement. After a comprehensive literature review relating to studies of social movement, the researcher encountered the Framing Perspective. Having explored the conceptual elements of the Framing Perspective (as explained above), this perspective reflected many of the features of the EoLC initiatives and programmes in Macao. The researcher therefore decided that the Framing Perspective would provide the theoretical underpinning to aid the interpretation of initiators and developers in the process of developing EoLC in Macao whilst, at the same time, facilitating the articulation of a theoretical understanding of the EoLC in Macao.

Reflexivity

Reflexivity of the researcher in this study was informed by the position as an ‘insider’ as well as an ‘outsider’. The recognition of this joint researcher position illuminated the researcher’s reflexivity during the research process, in that the researcher was aware of how her experiences, or lack of them, might contribute to the construction of meanings, from structuring research questions, facilitating interviews, to handling, interpreting and analysing the collected research data [ 45 , 46 ].

The current study had adopted the position of quality assessment for case study, advised by Thomas [ 47 ], to ensure the quality and robustness of this research. The researcher had kept clear documentation with regards to every step taken in conducting this study. The study had also provided participants with their interview transcripts, allowing them to confirm their responses and to make amendments should they see the need to do so. In offering this option to the participants, the study intended to safeguard participants’ confidentiality, but also wished to ensure the quality of the data [ 48 ].

Problem conceptualisation: the suffering of people as experienced at the end of their lives

The rise of a social movement usually intends to change a problematic situation (the grievance) identified by the movement’s adherents [ 40 , 41 , 44 ]. The rise of the EoLC movement in Macao, was found to have stemmed from one particularly problematic situation identified by the initiators of Macao, that was the suffering people experienced at the end of their lives. According to the Framing Perspective, the consensus of a problematic situation is often attained without complication, the attributional consensus, which is the consensus of the diagnostic frames, is usually more complicated [ 41 ]. While the study found that the three initiators of the ‘EoLC in Macao’ having different personal and professional experiences related to EoL situations, they had reached consensus and conceptualised the same problem. However, the attribution of the problem was found to be different amongst the three initiators. For instance, the hospice initiator attributed the problem to the absence of clinical EoLC, while the community EoLC initiator ascribed the problem to the absence of community EoLC in addressing the abandonment of the dying; for the nursing education initiator, her own suffering caused by the separation of life from death had become her motivation. The diversity of these attributions had led to the construction of various solutions (prognostic frames) to target the problem. As a consequence, the EoLC movement in Macao was being driven in different developmental directions.

With respect to the hospice initiator, introduction of the hospice service in Macao was inspired by initiator’s early visits to EoLC services in Hong Kong (HK) and Taiwan.

“Through the Nursing Association of Macao, I have encountered nursing associations in other areas. So I knew about HK and Taiwan those areas... places further away I didn’t know too much, because at that early time, our association didn’t contact associations in other areas. However, we still knew about Taiwan and HK, in particular, HK’s Bradbury Hospice, this was very famous when it first established. So I knew about this type of end of life nursing.”(Hospice Initiator)

Learning from her encounters with the dying, the hospice initiator realised there was a substantial care gap between acute illnesses and chronic incurable conditions in the healthcare system in Macao.

“I have also encountered some cancer patients would have nowhere to live at their terminal stage. One patient rented a shipping container, and in there was where the patient slept and planned to endure sufferings through his last phase of life. Because the patient didn’t think he could stay at home because his family were not able to manage. Perhaps, the family situation was not able to offer anything. So in fact, cancer patients at those times really suffered a lot during their final stage.”(Hospice Initiator)

The hospice initiator noticed that death and dying was not the priority of mainstream healthcare system, prompting a lack of institutional support offered to people suffering from EoL issues. The introduction of the hospice in Macao was therefore, the initiator’s effort in addressing the care gap between acute and EoLC. The establishment of the hospice was the prognostic approach in addressing the suffering people experienced at the end of their lives.

For the nursing education initiator, she first learned the concept of EoLC from a nursing colleague from HK.

“In 86, 87, I further studied in HK and met some nursing colleagues there. I remember there was one colleague, she worked in a hospice service in the hospital. She started that hospice service. She has studied at the origin of (hospice care) in England. After her studies, she came back to HK and started this service. I remembered it deeply and was very interested. I still remember her face. After talking with her and learned some ideas, I wrote more articles. The Nursing Association at the time had a journal column and I wrote quite a few articles about end of life issues, some related to bioethics and organ transplantation. I have also organised a group of people to visit the Bradbury Hospice in Hong Kong and wrote more about the experience there too.” (Nursing educator initiator)

In deliberating over her professional background and ability, the nursing education initiator decided that the construction of the EoLC concept would be more efficient and fitting if oriented towards the field of nursing. Furthermore, the initiator openly discussed about the pain and heartache she experienced.

“It is all because I have experienced it now, I have the feeling now. In cancer, it doesn’t just affect the patient but the entire family. This is my experience. Because myself, my mother-in-law and my husband, we all had to take care of my father-in-law. (…) I feel it is very important to help relatives of the dying to go through difficulties. This is something we have to do. This is my feeling. That is something we have to push forward, because I have experienced it personally.” (Nursing educator initiator)

Depicting the journey of her father-in-law’s death, the initiator understood the hardship in caring for a dying person, the practical difficulties and emotional distress during the process. The interpretation of the nursing education initiator was based on her personal pain as a result of death. After experiencing her father-in-law’s death, the initiator realised the pain death and dying could bring to a family. For the nursing education initiator, the personal experience of death and dying, and her subsequent encounter with the HK colleague had laid the foundation in respect to her involvement in the EoLC movement in Macao. The conceptualisation of the prognostic frames and approaches of the nursing education initiator was primarily grounded in this interpretive background of hers.

For the community EoLC initiator, the background as a physician from the United States had influenced the initiator’s perspective in relation to the EoLC movement in Macao. Working in a community clinic, the initiator had witnessed a need for EoLC care in the community.

“As I mentioned, one of the reasons for going specifically into terminal care ministry was that it was something that particularly the government health services had not yet focused on. And so this was recommendation of our nurses, whereas previously were providing more general community nurse service and its compared to the population it was very small amount of people we were able to reach but the model was established and then, when the government then, also adopted this model as a part of their healthcare provisions, then we, our nurses recommended we focused more on terminal illness at that time.” (Community EoLC initiator)

Emerged from the data, the various solutions developed by initiators corresponded with the different diagnostic frames conceived, and the different prognostic frames and approaches developed; a phenomenon explained by the Framing Perspective as a result of diagnostic framing is often projected onto prognostic framing, leading to different solutions developed by social movement initiators. Table 1 below summarises the various diagnostic and prognostic frames conceptualised by the three EoL initiators in Macao.

Regarding the establishment of EoLC in Macao, whilst the articulation of frames, by EoLC initiators, was based on the shared grievance, the meanings rendered to those frames were diverse. This diversity was particularly visible amongst the prognostic frames, thereby contributing to the incoherence of internal frames in the EoLC movement of Macao.

Diversified solutions: intra-movement frame disputes

Suggested by Snow and Benford [ 41 ], an intra-movement frame dispute is the fragmentation of goals and/or strategies amongst different individuals/ groups, within one movement. Intra-movement conflict was observed in the EoLC in Macao. Whilst initiators shared a unified vision of the grievance, the problems they framed contributed to this grievance differed.

The establishment of the hospice in Macao was essentially grounded in the hospice initiator’s moral obligation to help those who suffer from terminal illnesses; the establishment of an inpatient unit was the key solution for addressing the absence of care for the dying. Specifically, the hospice initiator suggested the hospice would provide an alternative option, besides curative therapy.

“It showed a real demand for end of life care. So at that time, we reported the demand to the government, to the Health Bureau, hoping that Macao would have this service in the future, because everyone else has it already. So we have suggested many times, we have written formal letters to the government this kind of thing. But as always, as you know, acute emergency matters take priority in Macao, so the starting of the service was not that easy.”(Hospice initiator)

Despite the slow progress in developing EoLC and the systemic priority placed on acute emergency care, the hospice initiator continued to push forward the establishment of the hospice.

Focusing on promoting and constructing the EoL concept amongst the general population and healthcare professionals, the nursing education initiator pursued her effort in organising public workshops, however, the quote below showed that her prognostic approach was being challenged by people’s rejection regarding death.

“Not accepting. Last year, I have invited Professor X (an EoLC expert) to promote this matter. Despite the professor was highly spirited, there were only a small amount of people responded. (…) For people from different fields, we have organised different seminars and workshops, but the response was not enthusiastic. Perhaps people think there are more important things than death and dying. (…) “When will we talk about life and death? It is nothing to do with me” Or “Death is so far away from me”.” (Nursing education initiator)

The different cultural and professional backgrounds guiding each of these three initiators formed the basis of the interpretations for their experiences in relation to death and dying. The diversity of their backgrounds had led to the construction of various prognostic frames. The lack of collectiveness of the EoLC movement in Macao was supported by initiators not being aware of, and not exploring other agencies in implementing EoLC. As a result, the solutions remained segregated from one another, as the community EoLC initiator aptly demonstrated in the quote below.

“Not aware of any that were specially related to that. Now in those years we were pretty internally focused, so we didn’t uh, not allow to have medical privileges at any of the hospitals in Macao. So we weren’t really connected with the other medical providers very well. Fortunately that’s changed, but. and so uh, but we were not aware of uh this service being available anywhere.” (Community EoLC initiator)

Not only was the initiator unaware of existing organisations, but he also had limited external collaborations with other organisations. The lack of collectiveness—the lack of internal frame cohesion—implies that the EoLC in Macao was unable to garner support in supporting one movement, resulting the fundamental lack of cohesion across key parties of the movement. Findings of this study support the phenomenon of Macao in which the growth of EoLC had become stagnant after the initial wave of establishment.

Continuing the discussion on frame misalignment by way of the Framing Perspective, the section below further elaborates on the influence of the chain effect on the issue of a lack of external frame cohesion. This deficit results from the lack of consideration initiators had paid to the cultural divergence between the EoLC they proposed and the existing cultural context of Macao.

The lack of external frame cohesion

In the data analysis, the study found that there had been a pervading cultural norm in Macao to maintain life at all cost and that this particular belief was in contradiction to the ethos of EoLC proposed by the initiators. Interpreting through the Framing Perspective, this contradiction of value demonstrates the difference between the prognostic frames proffered to address the suffering at the EoL in Macao, and the cultural insistence of sustaining a person’s life, regardless of quality. The conflicting nature between EoLC and the extant cultural element of life preservation had challenged the introduction of EoLC from the start, mainly because the ideologies conceptualised by initiators of EoLC were in complete contrast with the cultural beliefs held by the public of Macao.

“… They feel that no resuscitation equals giving up on life. Yes, so when the patient is not for resuscitation, relatives will feel they are sending the patient to a place with no medical treatment. Relatives will find it very difficult to see past their obligations. They have not really understood the service of palliative care. So their thoughts are normal.” (Hospice developer)

Evident in the above quote is a clear correlation between cultural expectations of sustaining life through resuscitation. Within the context of EoLC, a link was established between the idea of no treatment and no resuscitation; as a result, EoLC was being conceptualised as a way of abandoning the dying relatives. These findings lend support to existing research that, amongst Chinese patients and families, making a decision for the complete withdrawal of resuscitative measures was deemed unacceptable, due to the existing filial obligations; as a result, basic life support medications were still commonly given regardless of resuscitation status [ 49 , 50 ]. End of life care was being conceptualised/perceived as a form of abandonment of the dying, contrasting the external cultural beliefs held by the people in Macao. The formation of this misconception is, as seen through the prism of moral liability, essentially embracing the opposite values to those of curative care. Findings of the current study show that most EoLC misconceptions stemming from the opposite values of curative care, are related to the context of inpatient EoLC.

“Also, they didn't want to feel as if they have now come to the end and have to go to (the hospice) at the last moment of their lives. So, for them, they would perhaps choose to go to the hospital ward. Some people have asked to be transferred back to the hospital ward after coming into the hospice.” (Nursing education developer)

As the above extract suggests, EoLC is conceptualised as a place where death is certain, whereas curative care is the more hopeful alternative. Furthermore, EoLC is also being seen as a failure, as illustrated by the quote below; hence, some people may choose to go back to curative care.

They reject the hospice and what it has to offer. As I said before, they see that by going into the hospice, it symbolises failure. Complete utter failure and by that it means accepting death.” (Community EoLC developer)

The rejection of EoLC primarily stems from the idea that the acceptance of EoLC symbolises the acceptance of death. The absence of cure and the absence of the intent to cure mean that EoLC does not align with the Chinese cultural desire and expectation of life preservation. Findings of the study show that the proposed EoLC in Macao was predisposed to both intrinsic and extrinsic contradiction from the moment it was first introduced. Intrinsically, the EoLC principle of ‘not striving for a cure at any cost’ is evidently incompatible with a culture that insists on life preservation; a conflict which has led to the development of misinterpretations. The resulting misinterpretations of EoLC, and their strong association with the certainty of death, have further reinforced the misalignment between EoLC and the existing cultural context, which has further inhibited the growth of the EoLC movement in Macao. However, in the process of analysis, the intrinsic contradiction between EoLC and the existing cultural attitudes regarding life preservation through curative measures had already been recognised by the initiators at the early stage when EoLC was first introduced.

The fact that EoLC is not able to offer life sustaining measures makes it intrinsically difficult to align with Macao’s existing cultural values. As display in the quote below, the introduction of EoLC was hindered by this internal contradiction between EoLC and the extant cultural values of sustaining life, which then contributed to systemic inhibition imposed directly on the development of EoLC in Macao.

“We felt there was a real demand for end of life care. So, at that time, we had communicated the demand to the government and the Serviços de Saúde (The Health Department). We hoped Macao could have this service in the future because other places already had this service. So we had suggested many times, we wrote letters, this kind of thing. But as you know, acute matters needed to be attended first, so it wasn’t easy to start end of life care.” (Hospice initiator)

The priority of the government was on life sustaining measures, a situation initiators were well aware of. In spite of such a challenge, initiators persisted with their beliefs and pioneered EoLC in their individual areas (despite they did not work together). However, as the study’s findings suggest, the problem of misalignment between EoLC and the existing culture regarding life preservation, had persisted. According to the Framing Perspective, the more compatibility that exists between the proffered frames of a social movement and the existing cultural narrations, the more acceptable and popular the movement becomes [ 51 ]. In Macao, the connection of EoLC and no resuscitation was therefore unable to align with the existing cultural expectations of life preservation, thereby inhibiting the acceptance of EoLC and the overall development of the EoLC movement.

Put forward by Benford and Snow [ 44 ], the frame alignment processes are strategies adopted to help social movement to negotiate the acceptance of frames in the extant cultural context which the movement is situated; these processes are involved strategically, as social movement begins to establish frames, and potentially enhance movement efficacy from the start. With respect to the initiation of EoLC in Macao, initiators had not involved any of the framing processes in generating frames at the beginning stage of the initiative. The frames underpinned the initiation of EoLC were predominantly grounded in the three initiators’ interpretations of the degree of a person’s suffering experienced at the EoL. Initiators did not contemplate the extant cultural element, the desire and expectation to preserve life, when developing the initial frames for the EoLC movement. This misalignment has contributed to the misinterpretation and misconceptualisation of EoLC, which then negatively affected the overall acceptance of the EoLC movement.

The Framing Perspective has: i) enabled the theorisation of intra-movement frame disputes, and ii) explained why the EoLC in Macao failed to meet the criteria of being cohesive and collective in a social movement. Despite the theoretical stance of the Framing Perspective has offered a degree of explanation regarding the intra-movement frame disputes of the EoLC movement in Macao, it is not able to address the specific concern of frame fragmentation within one movement. Despite possible structural differences, social movements should have “cohesion and continuity over time” (p. 24) [ 52 ].

Albeit the Framing Perspective depicted the lack of internal frame cohesion due to the discrepancy amongst the EoLC initiators, the theory was unable to fully facilitate the investigation of the emergence of frame disputes within the EoLC movement of Macao. In particular, problems remain regarding: a) how initiators came to devise incoherent strategies and b) how the diversity had continued without any observable collaboration between initiators. Pertaining to the deviated integration between the EoLC movement and the Chinese socio-cultural context of Macao, the Framing Perspective offered little consideration of the cultural component in frame articulation, and how this may potentially affect the development of social movements. The EoLC movement of Macao was based exclusively on the initiator’s ideologies in targeting a specific problem, also identified by the initiators, was not specifically discussed in the frame alignment processes in the Framing Perspective. However, as asserted by Benford [ 53 ] in his study on frame disputes in the nuclear disarmament movement, for most cases of social movements there are usually challenges inhibiting movement initiators to construct and impose a particular version of reality. It is unlikely that the framing processes would not have encountered any form of challenges on social movement introduction. In contrast to Benford’s [ 53 ] assertion, Macao’s EoLC was discovered to have been framed exclusively on and informed by the three initiators’ version of reality; in summary, they believed the suffering at the EoL should be alleviated through the means of EoLC. As findings of the research show, the development of the EoLC movement in Macao was subsequently hindered by the misalignment between the frames introduced by the movement and the belief in life preservation existing in the cultural context.

In the studies of social movements, it is well established that one of the biggest challenges for social movement initiators is the promotion of frames, that are often established in contradiction to the dominant culture, in which the movement is embedded [ 54 ]. In the case of EoLC in Macao, complete alignment between extant cultural values, and frames proffered by EoLC, could be difficult to achieve due to the substantial cultural divergence between the two variables. Nevertheless, the issue of frame misalignment is, in one way or another, attributed and heightened by the negligence of initiators to take into account this cultural divergence, when in the beginning stage of frame articulation for the EoLC in the case of Macao.

The EoLC in Macao epitomises a type of social movement that is different from the types suggested by Snow and Benford [ 41 ], Snow et al. [ 42 ] and Snow et al. [ 40 ], in that the current structure of framing processes informed by the Framing Perspective only offers a limited understanding of social movements that are developed via frames that are based on the version of reality in accordance with their initiators’ interpretations. The study does not argue that the construction of this ‘alternate reality’(p.679) [ 53 ], is impossible; in fact, this reality has already been constructed as is evident from the establishment of both the hospice and the community EoLC services in Macao. The findings of the lack of both internal and external frame cohesion demonstrate how these factors have impacted the EoLC movement, and are thereby contributing to the theoretical understanding of such care model’s developmental process. Given the example of the EoLC movement in Macao, the study argued that the understanding of this type of movement is important.

Implications

Despite the modern hospice movement that was initiated in the UK always being known as a social movement, there is only limited evidence examining the modern hospice movement from a theoretical perspective. Focusing on the EoLC in Macao, this study has provided a new way to examine the development of EoLC by way of a social movement theory: the Framing Perspective. The findings of this study have broadened the understanding of the development of EoLC in the social movement sense. Whilst the Framing Perspective informed the consequential relationship between the diverse strategies in developing EoLC and their negative impact on EoLC, the Framing Perspective was unable to fully explain the phenomenon wherein the EoLC in Macao was developed upon initiator’s individual interpretations of the grievance. The use of the Framing Perspective has to an extent limited the understanding of the development of EoLC if and when perceived from a social movement perspective. This limitation again provides an opportunity for future research to consider other social movement theories in exploring the development of EoLC, not merely in Macao but also in other socio-cultural contexts.

This study develops an understanding of the development of EoLC in the specific socio-cultural context of Macao at both the theoretical and experiential level. This research makes an important contribution in illustrating and understanding the development of the modern hospice movement in the Chinese context of Macao. Despite claims internationally that the hospice is a social movement [ 1 , 55 ] there has been limited empirical and theoretical basis to support the claim. This research provides empirical evidence examining the mobilisation of the modern hospice movement from a theoretical social movement perspective. The social movement theory of the Framing Perspective [ 40 , 41 , 42 ] enables key facets of the development of EoLC to be explained and understood. The elements that have facilitated/inhibited the mobilisation of the social movement of the modern day hospice are valuable to understand for those seeking to develop or adapt hospice services around the globe. The lens of the social movement theory of the Framing Perspective as applied to the understanding of EoLC in the Chinese socio-cultural environment brings a unique dimension to the current understandings of the hospice development pertinent for international consideration.

Availability of data and materials

The audio-taped and transcribed interviews are not publicly available to protect participants’ confidentiality. Raw data may be obtained from the corresponding author on reasonable request.

Abbreviations

End of Life

End of Life Care

Clark D. Originating a movement: Cicely Saunders and the development of St Christopher’s Hospice, 1957–1967. Mortality. 1998;3(1):43–63.

Rhymes J. Hospice care in America. JAMA. 1990;264(3):369–72.

Article CAS Google Scholar

Clark D, ten Have H, Janssens R. Common threads? Palliative care service developments in seven European countries. Palliative Med. 2000;14(6):479–90.

Sikorska E. The hospice movement in Poland. Death Stud. 1991;15(3):309–16.

Kubiak AE, Suriková M. The hospice movement: the example of conflict between the process of personalized and rationalized institutionalization. Hospicové hnutie: príklad konfliktu medzi personalizovanou a racionalizovanou inštitucionalizáciou. 2010;42(3):237–54.

Google Scholar

Brown P, Flores R. Making normative structures visible: The British National Health Service and the hospice movement as signifiers of compassion and hope. Acta Sociol. 2011;54(1):61–75.

Article Google Scholar

Bodek H. Facilitating the provision of quality spiritual care in palliative care. OMEGA-J Death Dying. 2013;67(1–2):37–41.

Lai YL, Su WH. Palliative medicine and the hospice movement in Taiwan. Support Care Cancer. 1997;5(5):348–50.

Wright DNM, Wood J, Lynch T, Clark D. Mapping levels of palliative care development: a global update 2011. England: Worldwide Palliative Care Alliance; 2011.

Clark D, Wright M. The international observatory on end of life care: a global view of palliative care development. J Pain Symptom Manage. 2007;33(5):542–6.

Wright M, Hamzah E, Phungrassami T, Bausa-Claudio A. Hospice and Palliative Care in South-eastern Asia: A review of developments and challenges in Malaysia, Thailand and the Philipines. Lancaster: International Observatory on End of Life Care; 2008.

Wright M, Wood J, Lynch T, Clark D. Mapping Levels of Palliative Care Development: A Global View. J Pain Symptom Manage. 2008;35(5):469–85.

Clark D, Graham F. Evolution and change in palliative care around the world. Medicine. 2011;39(11):636–8.

Luczak J, Hunter GP. Hospice care in eastern Europe. Lancet. 2000;356:S23.

Leong RLB. Palliative care in Malaysia: a decade of progress and going strong. J Pain Palliative Care Pharmacother. 2004;17(3–4):77–85.

Nervi F, Guerrero M, Reyes MM, Nervi B, Cura A, Chávez M, et al. Symptom control and palliative care in Chile. J Pain Palliative Care Pharmacother. 2004;17(3–4):13–22.

Nixon A. Palliative care in Saudi Arabia: a brief history. J Pain Palliative Care Pharmacother. 2004;17(3–4):45–9.

Rajagopal M, Venkateswaran C. Palliative care in India: successes and limitations. J Palliative Care Pharmacother. 2004;17(3–4):121–8.

McDermott E. Advocating hospice and palliative care: Challenges, contexts and changes. Report of the 2nd Global Summit of National Hospice and Palliative Care Associations; Worldwide Palliative Care Alliance; 2005.

Bingley A, Clark D. A Comparative Review of Palliative Care Development in Six Countries Represented by the Middle East Cancer Consortium (MECC). J Pain Symptom Manage. 2009;37(3):287–96.

Glass AP, Chen L-K, Hwang E, Ono Y, Nahapetyan L. A Cross-Cultural Comparison of Hospice Development in Japan, South Korea, and Taiwan. J Cross-Cultural Gerontol. 2010;25(1):1–19.

Krongyuth P, Campbell CL, Silpasuwan P. Palliative care in Thailand. Int J Palliative Nurs. 2014;20(12):600–7.

Krakowiak P, Skrzypińska K, Damps-Konstańska I, Jassem E. Walls and Barriers. Polish Achievements and the Challenges of Transformation: Building a Hospice Movement in Poland. J Pain Symptom Manage. 2016;52(4):600–4.

Rhee JY, Garralda E, Torrado C, Blanco S, Ayala I, Namisango E, et al. Palliative care in Africa: a scoping review from 2005–16. Lancet Oncol. 2017;18(9):e522–31.

Hodges E, Read S. How might organisational institutionalism support the challenges of the modern hospice? Int J Health Plann Manage. 2018;33(4):768–74.

Elsey B. Hospice and palliative care as a new social movement: a case illustration from South Australia. J Palliative Care. 1998;14(4):38–46.

The Printing Bureau Macao. Association of Friends of Charity of Macau Macao: The Government of Macao Special Administrative Region; 1996. Available from: http://cn.io.gov.mo/Priv/record/39.aspx . Accessed 28 Jan 2021.

The Printing Bureau Macao. Macau Medical Mission Macao: The Government of Macao Special Administrative Region; 1995. Available from: http://en.io.gov.mo/Priv/record/3086.aspx . Accessed 28 Jan 2021.

The Economist Intelligence Unit. The 2015 Quality of Death Index: Ranking palliative care across the world. London: The Economist Intelligence Unit; 2015. p. 15.

Stake RE. The art of case study research / Robert E. Stake: Thousand Oaks, Calif. ; London : Sage, c1995.; 1995.

Stake RE. Case Studies. In: Denzin NK, Lincoln YS, editors. Handbook of Qualitative Research. Thousand Oaks, CA: Sage Publications; 2000. p. 435–55.

Stake RE. Case Studies. In: Denzin NK, Lincoln YS, editors. Strategies of Qualitative Inquiry. 2nd ed. London: SAGE; 2003. p. 134–64.

Wong KM, Choa M, Leong IS, Wong IL, Leong SM. Cognition and Attitude of the Nurses in Kiang Wu Hospital of Macau Towards Hospice Service. Macau J Nurs. 2002;1(1):15–7.

Leong SF, Chan PN, Chio IP, Lo LC, Lei SP. Student nurses’ attitude and cognition towards hospice care in Macau. Macau J Nurs. 2007;6(2):20–2.

Ng WI, Ku WH. Experiences of Diagnosis Disclosure of the Cancer Patients in Macau. Macau J Nurs. 2010;9(1):10–5.

Bryman A. Social research methods. Oxford: Oxford university press; 2015.

Twinn S. An exploratory study examining the influence of translation on the validity and reliability of qualitative data in nursing research. J Adv Nurs. 1997;26(2):418–23.

Regmi K, Naidoo J, Pilkington P. Understanding the processes of translation and transliteration in qualitative research. Int J Qual Methods. 2010;9(1):16–26.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.

Snow DA, Rochford EB, Worden SK, Benford RD. Frame Alignment Processes, Micromobilization, and Movement Participation. Am Sociol Rev. 1986;51(4):464–81.

Snow DA, Benford RD. Ideology, frame resonance, and participant mobilization. Int Soc Movement Res. 1988;1(1):197–217.

Snow D, Benford R, McCammon H, Hewitt L, Fitzgerald S. The Emergence, Development, and Future of the Framing Perspective: 25+ Years Since" Frame Alignment". Mobilization Int Q. 2014;19(1):23–46.

Goffman E. Frame analysis: An essay on the organization of experience. Cambridge: Harvard University Press; 1974.

Benford RD, Snow DA. Framing processes and social movements: An overview and assessment. Ann Rev Sociol. 2000;26(1):611–39.

Denzin NK, Lincoln YS. Strategies of qualitative inquiry / Norman K. Denzin, Yvonna S. Lincoln, editors: Thousand Oaks, [Calif.] ; London : Sage, c2003. 2nd ed.; 2003.

Hesse-Biber SN. Feminist Research: Exploring, Interrogating, and Transforming the Interconnections of Epistemology, Methodology, and Method. Handbook of Feminist Research. 2014:1–26.

Thomas G. How to do your case study: Sage; 2021.

Lancaster K. Confidentiality, anonymity and power relations in elite interviewing: conducting qualitative policy research in a politicised domain. Int J Soc Res Methodol. 2017;20(1):93–103.

Zhang Z, Chen M-L, Gu X-L, Liu M-H, Cheng W-W. Cultural and Ethical Considerations for Cardiopulmonary Resuscitation in Chinese Patients With Cancer at the End of Life. Am J Hospice Palliative Med. 2015;32(2):210–5.

Wang Z, Li Y-S, Zhao N, Yang J-J, Tu H-Y, Wu Y-L. Do-not-resuscitate orders among advanced-stage Chinese lung cancer patients who died in hospital. Support Care Cancer. 2016;24(4):1763–9.

Hunt SA, Benford RD. Identity Talk in the Peace and Justice Movement. J Contemp Ethnography. 1994;22(4):488–517.

Johnston H. What is a social movement?: Cambridge, UK : Polity; 2014.

Benford R. Frame Disputes within the Nuclear Disarmament Movement. Soci Forces. 1993;71(3):677.

d’Anjou L, Van Male J. Between old and new: social movements and cultural change. Mobilization Int Q. 1998;3(2):207–26.

Clark D. A special relationship: Cicely Saunders, the United States, and the early foundations of the modern hospice movement. Illness Crisis Loss. 2001;9(1):15–30.

Download references

Acknowledgements

We would like to thank all research participants, without whom this study would not have been possible. We would also like to thank Kiang Wu Nursing College of Macau in providing facilities during the data collection stage in Macao.

This work did not receive any funding, it was part of KIT’s self-funded doctoral research project.

Author information

Authors and affiliations.

Kiang Wu Nursing College of Macau, Est. Repouso No. 35, R/C, Macao, SAR, PR China

Kuai In Tam

Nursing Studies, School of Health in Social Science, Teviot Place, the University of Edinburgh, Room 2M3, Doorway 6, Edinburgh, EH8 9AG, UK

Elaine Haycock-Stuart

Nursing Studies, School of Health in Social Science, the University of Edinburgh, Room 1.12, 18 Buccleuch Place, EH8 8LN, Edinburgh, UK

Sarah J. Rhynas

You can also search for this author in PubMed Google Scholar

Contributions

KIT designed the study. KIT collected data. KIT analysed data and interpreted results. EH-S and SR supported data analysis and the interpretation of results. KIT wrote the manuscript. The authors read and approved the final manuscript.

Corresponding author

Correspondence to Kuai In Tam .

Ethics declarations

Ethics approval and consent to participate.

The study was approved by the Research Ethics Committee of the School of Health in Social Science, University of Edinburgh, 23 rd November 2012. Under the Ethics Framework of the College of Humanities and Social Sciences, University of Edinburgh, the study was undertaken in conformity with the Declaration of Helsinki. Informed consent was obtained from every participant in the form of signature and their anonymity was preserved.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1..

Interview guide - English version.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Tam, K.I., Haycock-Stuart, E. & Rhynas, S.J. Case study analysis of end of life care development in the Chinese cultural context of Macao: a social movement perspective. BMC Palliat Care 20 , 105 (2021). https://doi.org/10.1186/s12904-021-00807-1

Download citation

Received : 29 January 2021

Accepted : 25 June 2021

Published : 09 July 2021

DOI : https://doi.org/10.1186/s12904-021-00807-1

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

The modern hospice movement
Hospice care
Palliative care
End of life care
Chinese culture

BMC Palliative Care

ISSN: 1472-684X

Submission enquiries: [email protected]
General enquiries: [email protected]

COMMENTS

Case Study 3
Click here to review the draft Palliative and End-of-Life Care - Interactive Case Study. The following case vignette provides key concepts that could be considered when developing a plan of care for a patient who may require a controlled substance to manage their health concerns. As with any clinical situation, there are many patient ...
Case Studies in Palliative and End-of-Life Care
Case studies in palliative and end-of-life care / edited by Margaret L. Campbell. p. ; cm. Includes bibliographical references and index. ISBN 978--470-95825-4 (pbk. : alk. paper) ... Case Studies In Palliative and End-of-Life Care is written for clinicians caring for patients and their families across diagnoses, illness trajectories, settings ...
Palliative care in a critical setting: A case study : Nursing2020 ...
Care dilemma. The following is a case study of a patient who resided in the CCU for over 8 months. ... Most people approaching end of life die in the hospital and 20% of those die in a CCU. 2 Palliative and end-of-life care are realistic and ethical options that should be considered much sooner for many patients in the CCU. 3 Clinical team ...
PDF Patient-Centered Care: Case Studies on End of Life
Patient-Centered Care: Case Studies on End of Life Introduction People experiencing homelessness have diverse and complex health needs that can become increasingly difficult to manage when individuals are diagnosed with terminal or life-limiting conditions. As Dr. Pia Valvassori of Health Care Center for the Homeless in Orlando, Florida, explains,
"They choke to death in front of your very eyes": nurses' lived
The COVID-19 pandemic led to an intensified fear and threat of dying, combined with dying and grieving in isolation, in turn significantly impacting nursing in end-of-life situations. The study aims (1) to understand the lived experiences of nurses who provided care to end-of-life patients during COVID-19; and (2) to explore whether providing care under such circumstances altered the ...
Treatment withdrawal of the patient on end of life: An analysis of
A case study involving a request for treatment withdrawal by the family of a patient on end of life. ... The philosophy of end‐of‐life care could be viewed as respect for life until its natural end; ... a hospice retrospective cohort study. BMJ Supportive & Palliative Care, 3, 168-173. 10.1136/bmjspcare-2012-000327 [PMC free article] ...
Case Studies in Palliative and End‐of‐Life Care
Case Studies in Palliative and End-of-Life Care uses a case-based approach to provide students and practitioners with an important learning tool to improve critical thinking skills and encourage discussion toward improving experiences for patients and their families. The book is organized into three sections covering subjects related to communication, symptom management, and family care.
The Nurse Advocate in End-of-Life Care
Advocacy is a common thread of quality end-of-life (EOL) nursing care, encompassing pain and symptom management, ethical decisionmaking, competent culturally sensitive care, and assistance through the death and dying process. The foundation of advocacy is the nurse-patient relationship. Advocacy has 2 parts: information and support.
Case studies in palliative and end-of-life care [electronic resource
Publisher's summary. Case Studies in Palliative and End-of-Life Care uses a case-based approach to provide students and practitioners with an important learning tool to improve critical thinking skills and encourage discussion toward improving experiences for patients and their families. The book is organized into three sections covering ...
Nursing Care at the End of Life: What Every Clinician Should Know
Nursing Care at the End of Life: What Every Clinician Should Know should be an essential component of basic educational preparation for the professional registered nurse student. Recent studies show that only one in four nurses feel confident in caring for dying patients and their families and less than 2% of overall content in nursing textbooks is related to end-of-life care, despite the ...
A Comparative Case Study of Hospice and Hospital End-of-Life Care for
However, current research specific to people with developmental disabilities has rarely explored where and how end-of-life care is rendered. This comparative case study sought to address this gap by exploring the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses in the United States ...
End-of-Life Nursing Care and Education
The National College of State Boards of Nursing (NCSBN) now includes topics such as End-of-Life Care, Grief and Loss, and Advance Directives in the NCLEX-RN test plan blueprint (NCSBN, 2015). These topics are based on 16 competencies relating to end-of-life care created by the AACN Peaceful Death task force (Pimple et al., 2003).
End-of-Life Decision Making: Case 1
One Saturday evening, Mrs. Doe is congested. She begins running a fever, and her breathing seems labored. The nursing home staff calls 911 and sends the patient to the hospital. The emergency room physician consults with the internist and the pulmonologist, and the patient goes to the intensive care unit. She is intubated and put on a ventilator.
Case Studies: End of Life
Case Studies: End of Life. Case 1: An 86-year-old female patient admitted to hospital due to an increasing inability to cope at home and recent fall in which she suffered a broken hip. She has previously been diagnosed with COPD, hypertension and increasing cognitive deficits.
Nurses' moral distress in end-of-life care: A qualitative study
Discussion: In this study, moral distress was often associated with poor communication or a lack of communication between healthcare professionals and the patients and/or their relatives and with the inability to satisfy the patients' last requests. According to our findings, the concept of 'good' end-of-life accompaniment was extremely ...
PDF Palliative Care Case Study and Discussion
2. Explain the importance of honoring Advance Directives. 3. Demonstrate influence of multicultural background of health care providers and the care perspective. 4. Explain how an interdisciplinary Palliative Care Team utilizing a transdisciplinary approach impacts patient outcomes.
Cases on Ethics at the End of Life
Confronting a Fetal Abnormality. A case study raising issues of culturally competent health care for a Muslim woman. Case studies on end-of-life decision making and preserving patient dignity.
Ethical considerations at the end-of-life care
There is much common ground based on the application of the four major principles of medical ethics: nonmaleficence, beneficence, autonomy, and justice. The goal of end-of-life care for elderly people is to improve their quality of life, helping them cope with illness, disability, death, and an honorable death process.
Case study analysis of end of life care development in the Chinese
Study design. The qualitative case study model proffered by Robert Stake [30,31,32] was adopted in examining the emergence of EoLC in Macao, and developing a theoretical understanding of the EoLC establishment from a social movement perspective.The 'EoLC within the context of Macao' was determined as 'the case', in order to reinforce the focus of enquiry for the present study.
PDF Ê3DOOLDWLYHDQG
05/10/2021, 21:41 Case Study 3 - Palliative and End-of-Life Care - CASN nperesource.casn.ca/case-studies/case-study-3/case-study-3-palliative-and-end-of-life-care ...
A Comparative Case Study of Hospice and Hospital End-of-Life Care for
Greater attention is being paid to issues surrounding end-of-life care for aging adults with developmental disabilities. The purpose of this qualitative study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses who received care in settings in the United States.
Clinical Judgment Case Study
Clinical Judgment Case Study - End of Life Care. Instructor Carolyn Lichtfuss. After raising and home schooling her children, CJ got her Certified Nursing Assistant (C.N.A.) certification and ...