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Talking about death and making end-of-life decisions

Facing terminal illness, dealing with anticipatory grief, how to talk about death, the practical aspect of end-of-life planning, hospice comfort and care, when a loved one is terminally ill.

When a loved one is dying, talking about death and planning for the end of life can be difficult and very painful. But there are ways to make them easier.

Adapted with permission from  Coping with Grief and Loss: A guide to preparing for and mourning the death of a loved one , a special health report published by Harvard Health Publishing.

When a loved one develops a serious illness, it’s normal to go through an emotional experience akin to grieving. If the illness is terminal, it’s important to talk about death and plan for the end of life. These conversations can be difficult and very painful, but there are ways to make them easier for both you and your loved one.

Time seems to freeze when you learn that someone you love has a life-threatening illness. Maybe you instinctively pushed the news away. Or perhaps you cried, or swung into action. No matter what happened that day, time and life go on after the diagnosis is made—regardless of whether you feel ready to cope.

You and your loved one may have pursued promising treatments and perhaps enjoyed a respite from encroaching illness. At some point, however, the illness may become terminal, and gradually the end draws closer. Once further treatments are unlikely to be successful, there is a great deal you can do to muster support for both of you.

Some of the support you need is emotional. The fears and feelings that surface now are better aired than ignored. Some of the support you need concerns practical details. End-of-life care needs to be arranged and funeral plans need to be considered. Legal and financial matters must be addressed now or in the days after the death. This article can help guide you through some of these steps and suggest additional sources of support for you to draw on.

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Often, people feel anticipatory grief when they know someone they care about is seriously ill. Anticipatory grief means grappling with and grieving a loss before it completely unfolds.

When someone has a serious illness, there are many losses to grieve long before the person becomes terminally ill—for the person who is dying as well as for their family and friends. Blows to independence and security, impaired abilities, and truncated visions of the future are just a few examples of the devastating losses many experience.

Just as with grief after a death, family and friends may feel a multitude of different emotions as they adjust to the new landscape of their lives. Typical emotions at this time include:

Depending on the type of illness and the relationship you share, you may feel closer and determined to make the time you have left count. Perhaps you are terribly anxious about what’s to come or so firmly focused on last-resort treatments that you continue to push away any thoughts of the end. Possibly you long for release or feel guilty and conflicted.

Although not everyone experiences anticipatory grief, all of these feelings are normal for those who do. You may find the following steps comforting:

• Talk with sympathetic friends or family members, especially those who have weathered similar situations.
• Join a support group online or in person.
• Read books or listen to tapes designed for caregivers.

Making Time to Say Goodbye

Although painful in so many ways, a terminal illness offers you time to say “I love you,” to share your appreciation, and to make amends when necessary. When death occurs unexpectedly, people often regret not having had a chance to do these things.

Ira Byock, author of Dying Well and a longtime hospice advocate, suggests that dying people and their families exchange these words with each other:

• I forgive you

Sometimes, dying people hold on to life because they sense that others aren’t ready to let them go. Tell your loved one it’s all right to let go when they’re ready to do so. The assurance that you will be able to carry on—perhaps to help children grow or to fulfill another shared dream—may offer enormous relief.

Talking about death is often difficult. Possibly you worry that you’ll undercut your spouse’s will to continue or swamp your friend in fear. Speaking about death may seem like a form of abandonment because it suggests you’ve given up on the lingering promise of a cure. Your own anxiety, sadness, and discomfort may make the words choke in your throat.

But clinicians who work with people with a terminal illness point out the following:

• Some crave reassurance. Some people at the end of life are comforted by the thought that they will be embraced, not abandoned, no matter what happens.
• Some want to talk. They may tire of keeping up a good front or talking around a topic that looms so large that every other conversation strikes false notes.
• Some are afraid—and want empathy. They may be stifling their own numerous fears: leaving loved ones, losing control, becoming a burden, and leaving tasks and plans unfinished. Many people dread a painful death or the reflected fears of others. Sharing such fears and expressing beliefs about death can help people feel less overwhelmed and alone. It can also diminish physical pain, which is aggravated by fear.

Approaching this difficult conversation

Clearly, not everyone who is terminally ill is ready to talk about death. So how will you know when to talk and what to say? Below are some words that may help you. Your task in this difficult time is merely to open the door to this conversation and promise to stay for it if the person you care for wishes to talk.

Look for openings. A sermon or song you heard, a book you read, or the way someone else’s illness and death unfolded can be an opportunity for remarks that open the door. By commenting, you signal that you’re ready to talk and needn’t be protected.

Broach the topic gently. Elisabeth Kübler-Ross, psychiatrist and author of the book  On Death and Dying , describes conversations that start with the simplest question: “How sick are you?”

While you may be too close to reasonably make that inquiry, there are other questions you can ask:

• What do you worry about?
• How can I help?
• Is there anything you want to talk about?

Try not to rebuff tentatively expressed fears with hearty assurances, such as:

• That’s a long way off.
• Of course you’re not a burden.

It might help instead to ask specific questions. Depending on your loved one’s comfort level and receptiveness to the topics, questions you could ask include:

• What are you thinking about?
• What would be a good death?

Sharing your own thoughts on the nature of a good death may help.

Seek spiritual counsel. Talk with your religious leader or counselor. Priests, rabbis, and other religious leaders can offer real comfort to believers. Even people who do not regularly attend religious services may turn toward their faith as an illness progresses.

Ask advice about hospice. Hospice workers and hospital social workers can also help you and the person who is ill grapple with the issues surrounding death. Even if you have chosen not to use a full range of hospice services, some resources are often available.

Ask a doctor to help. A doctor’s reassurance about how physical symptoms might unfold and how pain will be handled can be invaluable. Some doctors can ask gently about fears, as well. Realize, though, that it’s not unusual for doctors (and nurses) to shy away from talking about death. Some feel determined to try everything and view death as a failure. Being human, they have their own fears and discomfort to deal with, too.

Let it go. Kübler-Ross noted that people slip into and out of denial during the course of illness and even during a single conversation. Sometimes it’s too hard to think or talk about death. Let your loved one end conversations that feel too difficult. Allow them to hold on to comforting thoughts and fantasies.

How Medical Staff can Help Families

When families of terminally ill patients have an opportunity to speak at length with medical staff about their fears, concerns, and questions, they may be better able to cope with their loved one’s death.

A 2007 New England Journal of Medicine study reported that longer, more empathetic end-of-life conferences eased stress, anxiety, and depression in family members of people who died in intensive care units (ICUs). Conducted in 22 ICUs in France, this randomized trial divided families of 126 patients into two groups; those in one group had short, standard conferences, and those in the other engaged in longer sessions and received a brochure on bereavement. During the longer sessions, staff focused on listening, acknowledging and valuing feelings, encouraging and responding to questions, and gaining an understanding of the patient as a person.

When the researchers contacted a representative in each family 90 days later, they found that those who attended longer end-of-life conferences had significantly lower scores on measures of stress, anxiety, and depression than did family representatives from the control group.

Few of us wish to think about practical matters at difficult times. But it’s easier, although not always possible, to consider many of these issues before they become pressing.

The sections below address the topics of advance care directives (which set forth how a person hopes to be treated medically toward the end of life), hospice services, and organ donation.

Advance care directives

An advance care directive helps ensure that a person’s health care wishes and end-of-life concerns are known and respected. These documents address how aggressively doctors should pursue life-sustaining measures and whether quality of life or comfort should be paramount concerns.

Two common advance directives are:

• Living will. This sets forth medical wishes that will guide health care if a person becomes mentally or physically unable to make decisions
• Health care power of attorney or health care proxy. These forms designate a person to act on an ill person’s behalf when necessary.

State laws vary, so it is important to make sure any advance directive complies with local regulations. A local hospital, hospice, or seniors’ organization may have staff members who can help prepare an advance directive. Or have your loved one discuss this with a lawyer qualified in elder law. (It’s wise for everyone to have advance directives, so you should also consider preparing them for yourself as well.)

One flaw of advance directives is the impossibility of knowing the exact circumstances under which they will be invoked, what medical options will be available, and how a person’s feelings might change. Rather than sidestepping this difficult issue, though, consider that mulling over wishes for end-of-life care can help people sort out values and feelings about medical measures often taken at the end of life.

A frank talk with a doctor about possible medical scenarios can provide guidance. It may help to know that if the person who wrote the advance directive has a change of heart at any time while under medical care, their spoken wishes override any written ones.

These wishes should be communicated fully with everyone involved. Make sure you or your loved one takes the following steps:

• Make a copy. Anyone named as proxy in a durable power of attorney for health care should have a copy of the document and know the goals for medical care. The proxy, a family member, and a lawyer, if any, should know where additional copies of the form are kept.
• Talk with medical staff. Talk with the doctors to be sure the wishes are understood and can be followed. Ask them to place a copy of the advance directive in the person’s permanent medical record.
• Inform family members. Discuss wishes for end-of-life medical care with family members. Acknowledge that this is a difficult topic. It may help to begin by talking about a recent case in the news or the treatment of someone you know.
• Repeat periodically. Have discussions with family and medical staff more than once to be sure wishes are understood. This is especially important as circumstances change.

Do-not-resuscitate orders

A do-not-resuscitate order (DNR) tells health care professionals not to attempt cardiopulmonary resuscitation (CPR) or defibrillation if the person’s heart stops beating. This document is written only when these measures are unlikely to revive a dying person or to prolong meaningful life. Generally, during the last stage of a terminal illness, CPR is not very likely to result in successful resuscitation.

Here is some advice about making the best use of DNR documents:

• Decide when a DNR is needed. Discuss the need for a DNR with your loved one and the doctors. There are different types of DNR orders, and forms and laws vary from state to state, so it’s important to discuss this issue with your loved one’s physician.
• Understand that medical care will still be available. It may be reassuring to know that even with a DNR, the patient will continue to receive appropriate medical care to treat short-term illnesses or injuries and relieve pain or other troubling symptoms. Emergency service personnel called to a person’s home can still give oxygen, medications, and fluids and transport the patient to a hospital, if necessary.
• Know why putting it in writing matters. It’s worth noting that health care and emergency personnel are required to attempt CPR if there is no DNR, even if the patient has asked family members to request that they forgo this measure.
• Keep the originals handy. Generally, only originals are valid, so it’s wise to have several originals of a DNR form. Always keep one original handy in the person’s home; the other should be carried by the patient or a caregiver at all times.
• Have some on file. In hospitals and nursing homes, the DNR is kept on file and noted in a patient’s chart. Mistakes do occur, so ask if this has been done.

Other decisions to make

It is difficult to predict these things in advance, but it’s worth considering whether you will or won’t want the following life support options:

• Mechanical ventilation: A machine called a ventilator or respirator forces air into the lungs for people who are unable to breathe under their own power.
• Intravenous hydration: A tube inserted into a vein supplies a solution of water, sugar, and minerals for people who are unable to swallow.
• Artificial nutrition (tube feeding): A tube inserted through the nose into the stomach supplies nutrients and fluids for people who are unable to swallow.
• Hemodialysis: Blood is circulated through a machine to maintain the balance of fluids and essential minerals and clear waste from the bloodstream for people whose kidneys are unable to perform this function.

Once a word that evoked shelter for tired and ill religious pilgrims, the term “hospice” has come to describe a concept of end-of-life care centered on quality of life. Hospice care—which encompasses physical, emotional, and spiritual needs—may take place at home or at a nursing home, assisted living center, or hospice residence. When a cure is not possible and aggressive treatment isn’t desired, hospice care offers symptom relief, pain control, and a great deal of support.

The hospice team works with the patient to develop a personal plan of care. Family, partners, and close friends may be invited to help in many ways, such as by assisting with daily tasks like feeding and bathing and offering comfort by reading, sharing music, holding hands, and simply being present.

Hospice programs vary greatly but generally share certain characteristics:

• Range of services. Hospice staff can administer pain medications, provide nursing care, and offer emotional support. Before and after a death, emotional support is extended to caregivers, too. Many programs offer bereavement counseling for a year after a death.
• A multidisciplinary team. The hospice team typically includes specially trained doctors, nurses, aides, social workers, counselors, therapists, people who offer spiritual care, and volunteers, according to the Hospice Foundation of America.
• Licensing, certification, and accreditation. Hospices must be licensed in most states. Those providing services covered by Medicare or Medicaid must be certified by the Centers for Medicare and Medicaid Services. Hospice programs may also be accredited by the Joint Commission or the Community Health Accreditation Program, but there is no national requirement for this.
• Insurance coverage. Hospice services are covered nationwide under Medicare and in at least 45 states and the District of Columbia under Medicaid for anyone who has a prognosis of six months or less to live. Many private insurers and health maintenance organizations also offer coverage.

As you consider hospice programs, the Hospice Foundation of America suggests you ask whether each is licensed and Medicare- or Medicaid-certified, or certified by other organizations. Find out what services are available, whether insurance or Medicare or Medicaid covers these costs, and what out-of-pocket expenses are typical. Sometimes a sliding-scale payment plan is available for services that insurance will not cover.

It is wise to investigate hospice programs well in advance, as there may be a waiting list for some facilities. Consider what will be expected of you and whether the hospice’s philosophy of care—including use of antibiotics, resuscitation, and hydration—matches that of your loved one and other family members. And ask about support programs for caregivers and availability of inpatient services.

Locating a Hospice Program Near You

The Hospice Foundation of America  at 1-800-854-3402 or  The National Hospice and Palliative Care Organization  at 1-800-658-8898

Hospice UK  at 020 7520 8200

Palliative Care Australia  at 61 2 6232 0700

Canadian Hospice Palliative Care Association

More in End of Life

Coping with a life-threatening illness.

Dealing with a diagnosis of cancer, heart disease, or other serious illness

Coping when a friend or family member dies

Advance Health Care Directives and Living Wills

Making the best end-of-life choices for you and your family

Coping with a loved one’s terminal illness

Quality of life at the end of life

Caregiving in the final stages of life

Understanding the grieving process and learning to heal

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9 Care of the Dying Patient

• Published: November 2019
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This chapter addresses the management of children and adults who are in the last hours or days of life, by providing details on the management of pain and other physical symptoms as well as suggestions for how to ensure psychosocial and spiritual support for the patient and their family. Providing palliative care during this time will not hasten death but is essential to ensure comfort and dignity for the patient. In the last hours and days of life, pain and other symptoms can be challenging to control. They may require frequent reassessment and rapidly escalating doses of medications.

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2.3: Ethical Concerns in End-of-Life Care

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• Page ID 10209

• Susan E. Lowey
• The College at Brockport (SUNY) via OpenSUNY

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In the sick room, ten cents’ worth of human understanding equals ten dollars’ worth of medical science. -Martin H. Fischer

Learning Objectives

• Define ethics and the role of ethics in medical decision making.
• Identify basic ethical principles and concepts.
• Examine difficult decisions in end-of-life care.

Ethics in Medical Decision Making

Ethics is a branch of philosophy that is focused on understanding the moral principles of people and how they make decisions based on what is considered morally right or wrong (Merriam-Webster, 2014). There are often ethical issues that can arise in the context of end-of-life care, particularly when patients and families make decisions regarding the care they will accept or not accept. As nurses, sometimes our morals and values are in conflict with those that our patients have, and this can cause some distress for the nurse. By having an understanding about some of the issues that can arise during end of life decisions, the nursing student or novice nurse can be better prepared for what to expect and how best to handle ethical issues.

As discussed in Chapter 5, patients’ goals of care are what patients place highest value on and would hope to achieve in regard to their illness. These goals are based on the patient’s moral principles and values. These are the goals the patient wishes for in terms of their illness. Often as patients near the end of life, many difficult decisions will have to be made. Some of these are related to what kinds of medical treatments they would want to have if they were no longer able to make their own decisions. In the clinical setting, it is not uncommon to witness conflicts between the patient’s wishes and those of their family. Sometimes, there can be conflicts between what the clinicians believe to be best for the patient and what the patient and family want to have done. Other times, the insurance or health care system has specific criteria that may come in conflict with the goals and values of the patient or family. This was evident in the recent national news story about 13-year old Jahi McMath (Fox News, 2013). In this case, the family wanted to continue to keep their young daughter on life support which conflicted with what the health care facility wanted. After several evaluations, the child was determined to be medically brain dead, and therefore continuation of medical treatments was considered to be futile. The goal of this chapter is to provide a basic understanding about ethical principles and to explore issues surrounding the issues that can arise during end of life decisions in patients who are nearing the end of life.

Basic Ethical Principles and Concepts

Nurses need to possess a basic understanding about the scope of practice and standards of care. This can be found in the Standards of Professional Nursing Practice from the American Nurse Association (ANA, 2010). Additionally, nurses should refer to the Code of Ethics for Nurses with Interpretive Statements (ANA, 2015). These resources should assist the nurse with their expected behaviors and role within the professional discipline of nursing.

Autonomy, beneficence, nonmaleficence, and justice are four of the basic ethical principles used to guide nurses and clinicians in the care and decision making of patients. Many of these same standards apply for nurses who are involved in clinical research as they are a way to ensure that people’s rights are protected as guided by specific moral principles.

Respect for autonomy

This principle is described as an agreement to respect another’s right to self-determine a course of action and to support another’s independent decision making (ANA, 2015). Sometimes it can be difficult to see a patient make a decision about their health that the nurse does not personally agree with or that the nurse does not feel is the best decision for that patient’s individual circumstances. As nurses, we must support and advocate for our patients’ rights, including their right to make decisions. While a nurse might not agree with a patient’s decision, they must support it. For example, a nurse has been caring for an elderly gentleman for several months as he has been receiving treatment for cancer. This patient has decided to stop his cancer treatments and focus on spending time enjoying his family for the time he has left. While the nurse has grown fond of this patient and would not want him to die, they must respect the patient’s wishes and choices for his own medical care.

Beneficence

Beneficence is the principle of “doing good” and has been suggested as having four distinct parts. These include:

• Not to inflict evil or harm.
• To prevent evil or harm.
• To remove evil or harm.
• To do good or promote good.

(Kennedy Swartz, 2001)

Sometimes it might be difficult to differentiate between doing good and doing no harm, which is nonmaleficence, because it is often easier to determine what is clearly bad or harmful more than what might be good or a benefit. Kennedy Swartz recommended that there is a greater obligation to not cause harm than there is to do something that might benefit the patient. Nurses should keep that in mind when assisting patients with difficult decisions.

Nonmaleficence

Nonmaleficence is the principle of refraining from causing unnecessary harm. Although some of the interventions that patients receive might cause pain or some harm, nonmaleficence refers to the moral justification behind why the harm is caused. Sometimes harm may be caused to a patient in order to prevent them from further harm. If the act is for a greater good for the patient and is not meant to deliberately harm them, it is justifiable. An example of this is the all too common clinical situation that occurs in end-of-life care. A patient whose death is imminent is in pain and requires pain medication to maintain comfort. The patient is very close to death with irregular respirations around 8 breaths per minute. The nurse needs to administer the pain medication but fears that giving it may hasten (or accelerate) death. According the Code of Ethics for Nurses (ANA, 2015), the nurse may “not act deliberately to terminate life”; however, the nurse has a moral obligation to provide interventions “to relieve symptoms in dying patients even if the intervention might hasten death.”

Justice is the principle that governs social fairness. It involves determining whether someone should receive or is entitled to receive a resource. The Code of Ethics for Nurses (ANA, 2015) states that nurses’ commitment is to patients regardless of their “social or economic status.” In healthcare, sometimes the benefits must be balanced with the burdens to determine who is eligible to receive some type of care. As mentioned in the beginning of this chapter, medical futility is continuing to provide a medical intervention or treatment that would not provide a cure or benefit to the patient. As with the young Jahi McMath, who was determined to have brain death, continuing to keep her alive on life support would be futile, as there is little or no hope for recovery. So this decision was considered just, as discontinuation of life support was not based on her age, ethnicity or socio-economic status. It was based on her medical diagnosis.

Some additional terms that accompany ethical principles include informed consent and capacity. Informed consent respects a patient’s autonomy and enables him/her to make an informed decision based on factual and accurate information. If a patient is not informed that declining to have a needed surgery would result in his death, then they cannot make an informed decision. If once this information is disclosed and the patient decides not to elect the surgery, it is an informed choice based on the facts. Capacity refers to the ability of a patient to understand information and to make choices or consent to care. So using the same example about whether or not to have a life-saving surgery, if the patient was cognitively impaired because he had Alzheimer’s disease, he would not have the decisional capacity to make an informed choice. If he was cognitively intact and decided not to elect surgery, then that would be his right.

Difficult Decisions in End-of-life care

Caring for patients who are nearing or at the end of life often enables nurses to bear witness to the complicated and difficult decisions that patients and families must make surrounding many sensitive issues. Although nurses have their own morals, values, and beliefs, they sometimes do not correspond with the patients’ values, beliefs, or wishes, and an internal conflict for the nurse can ensue. Some of the medical treatments and decisions we will discuss are simple and others are more complex. Regardless of the intervention or treatment, the nurse should focus on helping the patient weigh the benefits and burdens of the intervention, rather than focus on the intervention itself (Kennedy Swartz, 2001). Now we will discuss some of the difficult decisions that patients often need to make in end-of-life care.

Withholding/withdrawing of medical interventions

One of the dilemmas that can occur relates to the cessation of medical interventions in patients. Sometimes these interventions range from minor, such as a non-life sustaining medication, to more complex, such as mechanical ventilation. The rationale for stopping these interventions is often based on the fact that the burdens are outweighing any benefits the patient may get from it. Sometimes life-sustaining therapies may prolong suffering at the cost of decreasing the patient’s quality of life. Patients and their family often decide to stop medical interventions based on some of these factors. One of the most heart-wrenching decisions that family members often have to make is about withdrawing life sustaining treatments (life support) from patients. This is why advance directives are so important. Advance directives are documents that enable patients to make their decisions about medical care known to their family and health care providers, in the event that they are unable to make those decisions themselves (National Cancer Institute, 2013). If a family member knows for sure that their loved one would not have wanted a particular medical intervention done, it may help to alleviate some of the burden they may feel about making the decision. It also helps prevent the initiation of some life sustaining treatments beforehand, in which case no decision will be need to be made to withdraw that intervention. It also can help reduce overall costs of futile medical care (Coyne, Smith, & Lyckholm, 2010).

Do not attempt resuscitation (DNAR)

In 2005, the American Heart Association has changed from the more recognized acronym for do not resuscitate (DNR) to DNAR (Breault, 2011); however, depending on the location, the more traditional DNR terminology may still be used. If a patient has an order for a DNR or DNAR, it means that the patient has elected for cardiopulmonary resuscitation (CPR) to not be initiated or administered in the event of a cardiac arrest. CPR could include the use of chest compressions, cardiac drugs, and the placement of a breathing tube. Electing to have or not to have CPR is a difficult but common medical decision that patients nearing the end of life often make. The success rate of CPR has been low, around 18%, among all hospitalized patients who arrest over the past 50 years (Berry & Griffie, 2010), and it is well known that the percentage is even lower among patients with advanced illnesses such as terminal cancer or end stage heart failure. A “do not intubate” (DNI) order often accompanies a DNR order, which states that the patient elects not to be intubated with a breathing tube if they go into cardiac arrest. Chest compressions and the use of cardiac medications could still be used.

Allow natural death (AND)

Allow natural death is a more recent terminology some health care institutions have adopted to use instead of the traditional DNR orders. Whereas a DNR order states that no attempts should be made to start CPR in a patient, an AND order states that only comfort measures are taken to manage symptoms related to comfort. An AND order simply allows the patient to remain comfortable while not interfering with the natural dying process.

Medical order for life sustaining treatment (MOLST)

Sometimes also referred to as physician order to life-sustaining treatment (POLST), these newer forms of advance directives were developed in order to improve the communication of a patient’s wishes about life-sustaining treatments among healthcare providers and settings. It is currently in use in 26 states across the United States (Polst Organization, 2014).

Hastening death (Principle of double effect)

The principle of “double effect” refers to some decisions that clinicians have that will produce both desirable and undesirable effects (ELNEC, 2010). The example given earlier for non-maleficence, in which the nurse administers a pain medication in order to alleviate a patient’s pain and suffering but this same intervention may also contribute to a hastened death, is also an example of “double effect.” The medication will reduce the pain but also further reduce the patient’s respiratory rate to a level that is inconsistent with life. In the case of double effect, the nurse or clinician should always consider what the intended effect of the intervention is. Is the pain medication being administered to reduce pain and suffering, or is it being given to further reduce the patient’s respirations?

Terminal/palliative sedation

Terminal sedation (more recently called “palliative sedation”) is an intervention used in patients at the end of life, usually as a last effort to relieve suffering (Knight & Espinosa, 2010). It involves sedating the patient to a point in which refractory symptoms are controlled. The goal is to control symptoms, and the patient is sedated to varying degrees of consciousness to achieve this. The intent is not to cause or hasten death, but rather to relieve suffering that has not responded to any other means. Often the patient is sedated to a point at which they are unconscious. Table 8.1 shows the four criteria required for a patient to be considered for palliative sedation.

(Knight & Espinosa, 2010)

The fourth criteria is the most difficult to determine; however, one study found that the mean time between initiation of terminal sedation and death ranged from 1.9 to 3.2 days (Fainsinger et al., 2000). Terminal sedation has been compared with slow euthanasia and assisted dying; however, they are not the same thing. The key difference is based on the intent or purpose of the intervention. The intent is not to hasten death but to relieve suffering that cannot be relieved by any other available method. In assisted dying or physician assisted euthanasia, the intent is to produce death in order to relieve suffering. Palliative sedation has been supported as a means to alleviate suffering by the United States Supreme Court, and the Hospice and Palliative Nurses Association is in favor of its use (Hospice and Palliative Nurses Association, 2003).

Assisted dying

Assisted dying is defined as “an action in which an individual’s death is intentionally hastened by the administration of a drug or other lethal substance” (Volker, 2010). Under this general definition, there are two distinct subcategories that include assisted suicide and active euthanasia. In assisted suicide, the patient is provided with the means to carry out suicide, such as providing a lethal dose of a medication. In active euthanasia, someone other than the patient is the one who carries out the action that ends the patient’s life (Volker, 2010). In the United States there are four states that have laws allowing assisted dying. The state of Oregon was the first to pass the Death with Dignity Act in 1997, and since then, Washington, Vermont, and New Mexico have followed suit (Volker, 2010). The vast majority of ethical codes from the main nurses’ organizations prohibit the involvement of a nurse in the assisted dying of patients. The Oregon Nurses Association issued a statement that grants nurses the right to refuse involvement in the care of a patient who has elected assisted suicide.

What You Should Know

• Nurses caring for patients at the end of life have a moral and professional obligation to follow the guidelines depicted in their professional and ethical standards.
• The absence of an advance directive can make end of life decision-making difficult for families of dying patients who are no longer able to speak for themselves.
• Nurses need to advocate to ensure that their patients’ goals of care are met while following ethical principles.
• American Nurses Association. (2010). Scope and Standards of Professional Nursing Practice (2nd Ed.). Silver Spring Maryland: American Nurses Association.
• American Nurses Association. (2015). Code of Ethics for Nurses with Interpretive Statement s. Retrieved from http://www.nursingworld.org/ ­Main­Menu­Categories/­EthicsStandards/­CodeofEthics­for­Nurses/­Code-of-Ethics.aspx
• Berry, P. & Griffie, J. (2010). Planning for the actual death. In B. R. Ferrell & N. Coyle (Eds.), Oxford Textbook of Palliative Nursing (pp. 629-644). New York: Oxford University Press.
• Breault, J. L. (2011). DNR, DNAR, or AND? Is language important? The Ochsner Journal, 11 , 302-306.
• Coyne, P. J., Smith, T. J., & Lyckholm, L. J. (2010). In B. R. Ferrell & N. Coyle (Eds.), Oxford Textbook of Palliative Nursing (pp. 487-499). New York: Oxford University Press.
• End of Life Nursing Education Consortium (2010). ELNEC – core curriculum training program. City of Hope and American Association of Colleges of Nursing. Retrieved from www.aacn.­nche.­edu/­ELNEC
• Ethics [Def. 1]. (n.d.). Merriam-Webster Online. In Merriam-Webster. Retrieved from http://www.merriam-webster.com/­dictionary/­citation
• Fainsinger, R. L., Waller, A., Bercovoci, M, Bengtson, K, Landman, W, Hosking, M., DeMossaic, D. (2000). A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients. Palliative Medicine, 14(4), 267-275.
• Fox News. (2013). Jahi McMath’s case: Hospital won’t aid teen’s transfer. Retrieved from http://www.foxnews.com/ ­health/­2013/­12/­31/­family-california-teen-declared-brain-dead-says-ny-facility-is-last-last-hope/
• Hospice and Palliative Nurses Association. (2003). Position statement: Palliative sedation at the end of life. Retrieved from http://www.hpna.org/ ­pdf/­positionstatement­_palliativesedation­.pdf
• Kennedy Schwartz, J. (2001). Ethical aspects of palliative care. In M. LaPorte-Matzo & D. Witt Sherman (Eds.), Palliative Care Nursing: Quality Care to the End of Life (pp. 140-179). New York: Springer.
• Knight, P. & Espinosa, L. A. (2010). Sedation for refractory symptoms and terminal weaning. In B. R. Ferrell & N. Coyle (Eds.), Oxford Textbook of Palliative Nursing (pp. 525-543). New York: Oxford University Press.
• National Cancer Institute. (2013). Facts sheets: Advance directives. Retrieved from http://­www.cancer.gov/­cancertopics/­factsheet/­Support/­advance-directives
• Polst Organization. (2014). About the national Polst program . Retrieved from www.polst­.org/
• Volker, D. L. (2010). Palliative care and requests for assistance in dying. In B. R. Ferrell & N. Coyle (Eds.), Oxford Textbook of Palliative Nursing (pp. 1185-1192). New York: Oxford University Press.

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Do Terminally Ill Patients Prefer Hospital Care or Home Care?

Author : Sarah Williams

Reviewed by: Catherine Braxton

Many terminally ill patients prefer home care to hospital care, although preferences vary for each individual. Remaining at home allows a person to live in a familiar and comfortable environment, often close to family, friends and existing support networks. Non Medical in-home care services provide assistance with everyday activities , without which, seniors may require extensive skilled care.

Home Care Support Services

Several studies indicate that many people prefer to die at home. For terminally ill seniors with manageable conditions, home care can provide the support they need to stay at home safely and comfortably. Caregivers assist individuals with day-to-day tasks, such as:

• Preparing meals
• Running errands
• Completing domestic chores
• Helping maintain personal and oral hygiene
• Assisting with dressing, transferring from the bed to a chair and moving throughout the home

Most home care agencies also offer companionship services, which often brings comfort for those living alone. However, in-home care doesn’t include skilled nursing or therapies. Terminally ill individuals may need additional medically focused services to stay at home.    

Other At-Home Support for Terminally Ill Seniors

Home health care provides medical and therapeutic care at home. Care teams include nurses, nursing assistants, therapists, dietitians and medical social workers. A terminally ill person may receive skilled nursing services, such as pain management, medication administration and IV therapy, and professional caregivers monitor the individual’s health conditions and provide family guidance. Additional services include therapeutic techniques, recording vital data, coordinating outpatient appointments and nutritional oversight.

Those nearing the end of their lives may receive hospice care at home. The focus shifts from treating conditions to symptom management and personal comfort, allowing seniors to maintain as high a quality of life as possible. It also enables loved ones to make the most of their time together without caregiving burdens . Receiving care and support at home increases the likelihood of individuals fulfilling their wishes to avoid hospitalization and die in a familiar setting.     

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• v.16(2); May-Aug 2010

Care of Terminally Ill Cancer Patients: An Intensivist’s Dilemma

Sukhminder jit singh bajwa.

Department of Anaesthesiology and Intensive Care, Gian Sagar Medical College & Hospital, Ram Nagar, Banur, Punjab, India

Sukhwinder Kaur Bajwa

1 Department of Obstetrics & Gynecology, Gian Sagar Medical College & Hospital, Ram Nagar, Banur, Punjab, India

Jasbir Kaur

Background and context:.

Treatment of terminally ill cancer patients always poses great challenges especially when these critical patients are admitted in intensive care unit (ICU). The severity of their diseases throws a clinical and ethical dilemma to the treating intensivist.

Aims and Objectives:

To evaluate the benefits of intensive care treatment in terminally ill cancer patients and also to find out whether optimal utilization of critical care resources has got any positive financial, psychological and clinical outcome.

Materials and Methods:

A retrospective evaluation of 53 terminally ill cancer patients, who got admitted to ICU of our department, was carried out. Majority of these patients presented with terminal phase of illness involving multi-organ pathologies with diverse range of symptoms. These patients were provided ventilatory, symptomatic and supportive treatment on patient-to-patient basis. Strict and vigilant monitoring of all vital parameters was carried out. At the end of study, all the data was compiled systematically and was subjected to statistical analysis using non parametric tests.

The demographic profile of such patients was highly variable with regard to educational, social and financial status ( P <0.05). The most common group of cancer was hematological malignancies (24.53%) followed by lung cancer (18.87%), uteri-ovarian (15.09), colorectal (13.2%) and others. Significant number ( P <0.05) of patients (64.15%) required mechanical ventilation and ionotropic support (79.24%). Mortality increased with increasing number of organ system involvement and reaching up to 100% with involvement of 5 or more organ systems.

Conclusions:

ICU care is the best form of treatment for terminally ill but resources should be used optimally so that a young deserving patient should not be sacrificed for the scarcity of resources.

INTRODUCTION

The advancements in medical healthcare have achieved greater heights in the last few decades. However, despite the availability of early diagnostic and therapeutic interventions, the number of deaths in cancer patients is rising day by day. This scenario is more commonly observed in the developing nations like India where majority of deaths due to carcinogenic diseases go unrecognized.[ 1 – 3 ]

The word cancer was a taboo in the past, especially in the last four or five decades, which always invariably meant an incurable disaster and certain death of the patient. Today, with advancements in the medical fields especially with the growth of the oncological sciences, hopes and faith have been instilled again into the mind of the masses about the curative and palliative aspects of various cancers. Though the number of cancer patients may have increased over the last decade but that can be mainly attributable to the early and accurate diagnosis of various carcinogenic diseases.[ 4 ] As such, the load of cancer patients in the various higher centers is increasing day by day and majority of such patients have to be admitted in general critical care units rather than in the specialized oncology centers. The intensivists, anesthesiologists and the physicians have to manage such cases and in doing so they have to live up to new challenge to treat such cases. They have to keep themselves updated all the times regarding various treatment regimens and intervention strategies while treating such patients as oncologist’s services are not uniformly available in majority of these centers.

The tertiary care centers and especially the oncologic centers have to attend a large number of cancer patients, at varying stages of cancer, either on OPD basis or as an emergency patients. These categories of patients are entirely different from the normal patients as majority of them do know about the diagnostic and prognostic implications of their disease. Handling of such patients is not just a clinical difficulty but also a socio-cultural and behavioral challenge. The clinician has to be precise not only in his clinical skills but also should have some special attitudinal and behavioral constructs while treating such patients.

These situations become all the more challenging when the physician has to deal with the terminally sick patients who are almost at the far end of their disease process and are knocking on the doors of eternity. These patients are either diagnosed late or have been on anti-cancer regimen for a prolonged duration. Majority of them hardly visits a physician during the clinically asymptomatic phase of their respective oncologic disease. It is only during the clinically expressed disease entity or some bodily discomfort that force them to see a physician. By that time, the oncogenic process would have got distributed widely and would have invaded a lot of other tissue structures of the body. This leads to an irreversible stage from where it becomes almost impossible for a diseased body to stage a comeback to its normal.

At this stage, patients come to the hospital with so many expectations from the clinician and do expect a little magic to ward off their irreversible disease stage. The expressions in their blank eyes demand an altogether urgent attention from the attending doctor with a hope that they will get another lease of life for some more years. This acquires all the more a gigantic task for physician when these patients report with multiorgan involvement especially the invasion of pulmonary, cardiac, hepatic and renal tissues. The prognosis is almost nil with multiorgan disease and one can only provide palliative care.[ 5 ] The biggest clinical challenge to an intensivist at this stage is whether his services will be of any benefit to the patient. While putting such patients on mechanical ventilation, which has got massive pulmonary involvement, is always the biggest dilemma for an intensivist knowing very well that the intervention is not going to improve the patient’s underlying disease condition. Rather prolonged ICU stay will add to the economic burden of the financially depleted relatives who have been spending a lot for the treatment of underlying cancer for quite a while now. But ethically and socially neither the relatives nor the intensivist will like to aggravate the misery and agony of such patients who cannot survive without artificial ventilation for even a day. To avoid the feeling of guilt due to social and moral pressures, even though knowing the fate of the patients in majority of the cases, relatives and attendants almost always request for the ventilatory support despite having a financial crunch. Though the mortality index of ICU increases with such admissions but an intensivist has to support such care and intervention on the basis of socio-cultural and ethical considerations. The other big dilemma for an intensivist is that he cannot provide good results among such patients and to some extent it does cast a negative psychological impact on the relatives and attendants of the patient. By admitting such patients in ICU, it becomes very challenging task for an intensivist to live up to the faith of the people. An intensivist has to be very straight forward in his or her approach at this stage and at the same time he or she has to handle the personals in a very delicate and tactful manner; otherwise the image of ICU will just be limited to the projection of a mortality ground to the general public. This aspect acquires a great importance as most of the population in the developing countries like ours, is not properly educated as well as not well informed about the delicate intricacies of intensive and tertiary care.

With increasing awareness, medical advancements, realization of value of human life and increasing availability of intensive care facilities, the role of intensivist has become more and more tough and challenging and burden on his mind and shoulders increases in direct proportion to the public expectations. The role of an intensivist acquires a dual model and that not just of a sound clinician but of a good diplomat as well.

Keeping the various implications of tertiary care of terminally ill cancer patients, we undertook a retrospective study of fifty-three patients of our institute who were admitted to ICU with terminal stages of various cancers with an aim to evaluate the benefits of intensive care treatment in terminally ill cancer patients and also to find out whether optimal utilization of critical care resources has got any positive financial, psychological and clinical outcome.

MATERIALS AND METHODS

After the clearance from institutional ethical committee, we undertook a retrospective evaluation of 53 terminally ill cancer patients, who got admitted to ICU of our department from the period of 20 th December 2006 to 20 th April 2010. 46 out of the 53 patients were established cases of malignancy who were already taking anticancer regimens for quite a long time from different oncology centers while rest were diagnosed for the first time in the institute only. Majority of these patients presented with features of shock, restlessness, altered sensorium, gastro-intestinal bleed, pain abdomen, severe backache and arrhythmias. Few of these patients presented with symptoms of advanced respiratory failure and were in urgent need for mechanical ventilation. Ventilatory support was given to 34 of these patients while rests of the patients were treated without ventilatory support. Besides the ventilatory support, the symptomatic and supportive treatment was carried out in close coordination with the oncologists and the physician on patient to patient basis. During the ICU stay, all the relevant investigations were carried out for ascertaining the stages of the malignancy and the extent of organ involvement. The ICU treatment comprised of specialized anticancer regimens, mechanical ventilation, monitoring of vital parameters, blood, platelets and plasma transfusion, electrolyte and metabolic correction, parenteral and enteral nutrition, hemodialysis, management of co-morbid diseases, psychological counseling of patients and their relatives besides routine antibiotic prophylaxis and other supportive medications.

The consent of the relatives was taken regarding the poor prognosis and the expenses involved while treating such patients. Intensive monitoring was carried out for all the patients during their stay in ICU which included monitoring of heart rate (HR), electrocardiogram (ECG), non-invasive and invasive blood pressure, end tidal carbon dioxide, pulse oximetry, central venous pressure monitoring, temperature etc. Particular attention was paid to the acute side effects of anticancer regimen being administered to the patients. At the end of the study, all the statistical data including patient demographics, indications for ICU admission, type of malignancy and stages of malignancy, organ involvement and patient outcome were organized systematically and subjected to statistical analysis with non parametric tests like chi square test. Value of P <0.05 was considered as significant.

From 20 th December 2006 to 20 th April 2010, there were 879 ICU admissions, including 53 admissions pertaining to the terminally ill cancer patients. Most of these 53 cancer patients came to the hospital for the first time and they were receiving anticancer treatment from other centers. Most of these patients came to the emergency ward due to the nature of their presenting symptoms and were subsequently shifted to ICU for further management.

The demographic profile of the patients is shown in Table 1 .

Demographic profile of the patients

The average mean age of these patients was 58.18±10.38 and a median value of 61 with a range of 42-88 years of age. The statistical analysis of educational status revealed statistically significant values ( P <0.05) as 77.36% of the patients had educational status of more than a high school, 15.09% had education up to 10 th standard while 7.54% of the patients had almost negligible educational level rather they were illiterate. The 9.43% of patients were having income below Rs 3000/month which is almost equivalent to below poverty line while those having income between Rs 3000-5000 constituted 15.1% of the total patients. 75.47% of the patients had family income greater than Rs 5000/month which was highly significant statistically ( P <0.001). 45.28% of the patients who got admitted in critically sick condition hailed from rural area while 54.72% of the population comprised of urban society which on statistical comparison turned out to be a non-significant relation ( P >0.05). The percentage of population (86.8%) was statistically significant ( P <0.05) who were established cases of various cancer and had been on anti-treatment for a long time and the mean duration of the treatment was 2.8 years in such patients.

The most common reasons for admission to ICU are shown in Table 2 .

Reasons for admission to intensive care unit

The most common primary indication for admission to ICU was respiratory insufficiency (39.62%) followed by gastro-intestinal symptoms like severe anorexia, nausea, vomiting and pain abdomen (20.75%). Heart disease and cardiovascular instability was responsible for 13.20% of the total cancer admissions in ICU while Haematemesis/hemoptysis and neurologic disorders accounted for 9.43%/5.66% admissions respectively.

Table 3 shows the underlying cancer disease which necessitated the admission of these patients to ICU. Hematological malignancies were the most common cancer group in these patients (24.53%) while pulmonary, ovarian, colorectal, gastro-esophageal, prostatic etc were the other cancer pathologies which the patients were suffering from and are tabulated in descending order.

Underlying cancer disease

Airway protection became necessary in 64.15% of the patients as shown in Table 4 , who were intubated and subsequently put on mechanical ventilation which on statistical analysis turned out to be a significant value ( P <0.05). Requirement of ionotropic support became essential for the maintenance of hemodynamic stability in significant percentage (79.24%) of cancer patients. The mean total duration of stay in ICU was 38.34 days with standard deviation of 5.66 and the range varied from minimum 5 days to maximum 71 days. Mortality was significantly higher among these patients (77.36%) as we could not save 42 patients among 53 most of whom had developed multiorgan failure.

Patients data

The mortality figures climbed northward as number of organ involvement increased in the disease process. As shown in Table 5 , three patients out of six succumbed to their disease that had just a single organ involvement while binary organ dysfunction led to the deaths of 61.5% of the patients. Mortality increased significantly ( P <0.05) with progressive involvement of multiple organs as shown in the Table number 5. Mortality rate increased to 80% with three, 91.67% with four and 100% deaths with five or more organs getting involved in the disease process.

Throughout the world, cancer patients do require ICU admission at the terminal stages of the disease or sometimes even much earlier. Majority of our patients were well educated and did know about their disease and its stage to a large extent which also helped us in pre-admission counseling and in explanation of the prognosis to them and to their relatives. Anti-cancer treatment was already being administered to a significant proportion of the patients for quite a long time from different oncologic centers. The financial status of majority of these patients was good which enabled them to carry on the treatment of cancer for quite a long time and they all came from different strata of rural and urban background which clearly establishes the fact that cancer is prevalent almost equally in all the sections of the society irrespective of its geographical location.

The respiratory failure is one of the most common presenting symptoms in patients with terminal stages of cancer and sometimes the only indication for admission to ICU as was also discovered in our retrospective analysis. Majority of the patients who got admitted with non-respiratory symptoms did eventually develop respiratory failure necessitating artificial ventilation. The severity of respiratory disease at the time of admission to ICU and the urgency of mechanical ventilation is associated with a very high mortality.[ 6 ] The usual score patterns, hematological picture and type of cancer are hardly of much significance in terminally ill cancer patients in evaluating the prognosis. Similarly, the gastro-intestinal, cardiac and other symptoms are hardly in practice to evaluate accurately the prognostic stages of such patients. The spectrum of cancer disease is very wide, as is evident from our analysis, and it is not the type of cancer that warrants ICU admission, rather it is the stage of cancer which determines the severity and necessity of intensive care intervention.[ 7 – 10 ] The main determinants in such cases are basically the number of organs involved at the time of admission as well as rapidly progressive involvement of multiple-organ involvement during ICU stay. We experienced a very high mortality incidence with increasing involvement of organ systems as the figures touched the century percentage mark with involvement of five or more organs.[ 11 , 12 ]

Pneumonitis is one of the most common underlying respiratory diseases in cancer patients. Though cancer and pneumonia do not warrant ICU admission but delay in treating disease can cause perfusion-ventilation mismatch.[ 13 ] The resulting need for mechanical ventilation is itself a poor prognostic factor[ 14 , 15 ] and 32 out of 34 of our patients who required mechanical ventilation never came off from the ventilator and ultimately expired. Ionotropic support became necessary in 80% of the patients and among them 39 patients succumbed to the clutches of fatal hemodynamic instability. The dilemma for us increased further when relatives of the few patients did not give us consent to use mechanical ventilation rather requested to continue with the pain free and palliative aspect of cancer treatment. The sequences of events leading to respiratory failure are being seen as the terminal stages of the oncogenic process by most of the oncologist. The dilemma begins when most of the ICU admissions for such patients are denied across the world as most of the intensivists feel that invasive ventilation is a strong predictor of mortality in such patients. Occupancy of the beds by such patients leads to denial of ICU admission to so many deserving and salvageable patients. The scarcity of intensive care facilities and the services of well trained intensive care staff do warrant the careful and optimal use of these facilities for the betterment of mankind.

These scarce facilities along with high cost involved in the mortality of such patients have been on the prime agenda of various health analysts who have decried the high cost of dying.[ 16 – 21 ] The equal inability of an intensivist to produce perfect results in such cases not only traumatizes the family members psychologically and physically but it causes a big hole in their pockets leading to the financial depletion. Nowadays suitable measures are being adopted not just in developing countries but by developed nations as well to control the costs involved in futile care at the end of life.[ 22 ]

The poor prognosis of ventilated patients with cancers, especially hematological malignancies, has been a major incentive in the use non-invasive ventilation in such patients. While experience in non invasive ventilation is of prime importance, it is the early use especially in conditions requiring supplemental oxygen and a drop in SaO 2 of >10% that the most benefit is expected. We administered non invasive ventilation in 6 of our patients and could save 5 out of them. The survival index among such patients is quite low and it was 22.64% in our setting which further added to the burden of dilemma on our mindset.

Advance directives and hospice services have been developed keeping the compassion and dignity of patients in consideration. The whole exercise basically aims at reserving the scarce intensive facilities as well as controlling the costs involved.[ 23 , 24 ] These moral justifications and economic considerations reflected in advanced directives are beneficial both to the patients as well as to his family.[ 25 , 26 ] These arguments are based on the ground that in patients with advanced cancer death is imminent and whatsoever interventions are done in these patients, it is not going to cure the disease process or decrease the mortality and morbidity. Though these services are very much available in the developed nations, they have yet to make a ground in developing nations like ours.[ 25 ]

The dilemma get exaggerated for the intensivist when he has to face the do not resuscitate orders (DNR) for such patients by the superior authority as it is argued that use of resources on such patients are extremely wasteful steps.[ 27 – 29 ] The unpredictability of death in these patients and the non-reliability of any method to estimate the time of death can prolong the ICU stay of such patients leading to increased consumption of scarce resources. Even the outcome of such interventions cannot be established with certainty which further increases the economic burden on patient and his relatives. Though DNR orders are in place for majority of ICU’s but no such orders have been carried out in our institute mainly to preserve the dignity and give respect to the autonomous decision of the relatives as well as living up to the faith shown in us by them as most of them expects us to do all the aggressive efforts to save the life of the patient till the last breath.[ 30 , 31 ] They expect from us to continue the life sustaining procedures even being fully that such interventions are not going to be of much help in their patients who have attained an almost vegetative state.[ 32 , 33 ]

The intensive care services should be appropriately used for such patients keeping in mind the following points thereby decreasing the intensity of dilemma in handling such patients.

• Respect should be given to the decisions and faith of the cancer patients and their relatives.
• The criteria’s for ICU admission should be clearly defined for these patients.
• Not a single young patient who requires ICU admission should be sacrificed on account of non-availability of bed and denied the privileges of intensive care facilities.
• Alternatives to ICU admission facilities should be made available to such patients thus relieving the economic burden on scarce resources.
• The quality of life post-ICU admission should be estimated and evaluated for further medical and ethical decisions concerning the level of care in the ICU.

One alternative is HOSPICE care which is aimed at caring and not curing methods for the terminally ill cancer patients. Quality of left life is given more stress rather than aiming for prolonging the life days. It covers various aspects such as pain management, symptomatic treatment, psychological counseling, training of the family members in the care methods of terminally ill patients and preparing them for the eternal outcome. But this method is yet to pick up the pace in developing nations like ours where there are multitudes of laggards which are hindrances in the successful execution of such projects.

Thus, we can conclude from all this discussions that ICU is still the best place for such treatment modalities in spite of shortage of specialist services in our country. But equal attention must be paid to provide intensive care facilities to the young patients who have got higher chances of survival by optimal and careful use of these scarce facilities.

Source of Support: Nil

Conflict of Interest: None declared.

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Breitbart W , Rosenfeld B , Pessin H, et al. Depression, Hopelessness, and Desire for Hastened Death in Terminally Ill Patients With Cancer. JAMA. 2000;284(22):2907–2911. doi:10.1001/jama.284.22.2907

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Depression, Hopelessness, and Desire for Hastened Death in Terminally Ill Patients With Cancer

Author Affiliations: Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY (Drs Breitbart and Kaim, Mss Pessin and Funesti-Esch, and Mr Nelson); Department of Psychology, Fordham University, Bronx, NY (Dr Rosenfeld and Ms Galietta); and the Palliative Care Institute, Calvary Hospital, Bronx, NY (Dr Brescia).

Context  Understanding why some terminally ill patients desire a hastened death has become an important issue in palliative care and the debate regarding legalization of assisted suicide.

Objectives  To assess the prevalence of desire for hastened death among terminally ill cancer patients and to identify factors corresponding to desire for hastened death.

Design  Prospective survey conducted in a 200-bed palliative care hospital in New York, NY.

Patients  Ninety-two terminally ill cancer patients (60% female; 70% white; mean age, 65.9 years) admitted between June 1998 and January 1999 for end-of-life care who passed a cognitive screening test and provided sufficient data to permit analysis.

Main Outcome Measure  Scores on the Schedule of Attitudes Toward Hastened Death (SAHD), a self-report measure assessing desire for hastened death among individuals with life-threatening medical illness.

Results  Sixteen patients (17%) were classified as having a high desire for hastened death based on the SAHD and 15 (16%) of 89 patients met criteria for a current major depressive episode. Desire for hastened death was significantly associated with a clinical diagnosis of depression ( P = .001) as well as with measures of depressive symptom severity ( P <.001) and hopelessness ( P <.001). In multivariate analyses, depression ( P = .003) and hopelessness ( P <.001) provided independent and unique contributions to the prediction of desire for hastened death, while social support ( P = .05) and physical functioning ( P = .02) added significant but smaller contributions.

Conclusions  Desire for hastened death among terminally ill cancer patients is not uncommon. Depression and hopelessness are the strongest predictors of desire for hastened death in this population and provide independent and unique contributions. Interventions addressing depression, hopelessness, and social support appear to be important aspects of adequate palliative care, particularly as it relates to desire for hastened death.

Understanding why some patients with a terminal illness seek to hasten their death remains an important element in both the physician-assisted suicide debate as well as the practice of palliative care. 1 - 3 Conflicting findings regarding the importance of factors such as pain, depression, and physical functioning have fueled debates regarding how best to respond to patient expressions of a desire to die. 4 , 5

Unfortunately, the growing literature on interest in physician-assisted suicide has been plagued by methodological shortcomings that limit the conclusiveness of published findings. 6 In response to methodological concerns, researchers have identified the concept of "desire for hastened death" as a unifying construct underlying requests for assisted suicide, euthanasia, and suicidal thoughts in general. 7 - 9 Studying desire for death may be preferable to studying requests for assisted suicide because the latter are influenced by legal and social constraints as well as desire for hastened death. Studying factors associated with desire for hastened death enables researchers to explore issues central to end-of-life care in a broad spectrum of terminally ill individuals rather than the minority who request assisted suicide.

Recently, researchers have developed scales designed to assess the construct of desire for hastened death. 8 - 10 Chochinov et al 8 developed the first such scale, a clinician-rated single-item scale, the Desire for Death Rating Scale. More recently, Rosenfeld et al 9 , 10 published a 20-item self-report measure of desire for hastened death for use with medically ill patients, the Schedule of Attitudes Toward Hastened Death (SAHD). Both of these measures assess the extent to which medically ill individuals desire a more rapid death than would occur naturally. In our study, we used the SAHD to assess the factors influencing desire for hastened death among hospitalized, terminally ill cancer patients. The purpose of this investigation was to explore the relationships between desire for hastened death and depression, hopelessness, social support, and physical symptoms to improve end-of-life care.

Patients were recruited after admission to a 200-bed palliative care hospital in New York City between June 1, 1998, and January 31, 1999. Patients had a life expectancy of less than 6 months and the average time until death was 28 days. Patients were eligible for study participation if they spoke English, were sufficiently cognitively intact to provide informed consent and valid data, and were not considered likely (by their physician) to suffer psychological harm from participation. Patients approached for participation represented 22% of the total patients admitted during the study period (most patients admitted were too cognitively impaired or ill to participate in research). Prior to participation, all patients were informed of the nature, risks, and benefits of study participation and consented to participate. The study was approved by the Calvary Hospital institutional review board.

Of 154 patients offered participation, 122 consented (79%; most patients who refused cited physical discomfort and/or fatigue as the reason). An additional 22 patients were excluded because their Mini-Mental State Examination score 11 was below 20, resulting in a sample of 100 patients who met inclusion and exclusion criteria. Only 92 of these 100 patients provided sufficient data to permit data analysis (80 subjects completed the entire battery). Eight patients were unable to complete the study because of physical deterioration or death; 3 patients withdrew because of psychological distress, and 7 withdrew for other reasons (eg, increased confusion, family member request). The data presented herein are based on the 92 patients who provided sufficient data to permit most statistical analyses.

The sample included 55 women and 37 men ( Table 1 ), with an average age of 65.9 years (SD = 15.6) and an average of 12.7 years of education (SD = 3.7). Most patients were white (70%); 21% were African American, and 9% were Hispanic. The demographic composition of the sample was roughly comparable to the overall composition of patients hospitalized during the study period (female, 54%; average age, 70.2 years; white, 60%; African American, 24%; Hispanic, 13%; and other, 2%). Fifty-two percent of the sample was Catholic, with 18% Protestant, 16% Jewish, and 13% other (or no) religious affiliation. Seventy-eight percent of the sample (63 of 81, data were missing for 11 subjects) reported pain during the preceding 2 weeks; the average pain intensity (based on a 0-10 rating scale) for these patients was 4.3 (SD = 2.1), reflecting mild to moderate pain. At the time of study participation, 37 (40%) of 92 were prescribed antidepressants, although these medications were occasionally prescribed for pain.

Participants who consented to participate and scored 20 or higher on the Mini-Mental State Examination were administered several clinician-rated and self-report measures (because of potential fatigue or vision problems, all questionnaires were read to participants). Most evaluations were completed in a single interview, although testing was occasionally divided into 2 sessions conducted over the next few days (incomplete data were retained whenever possible, providing patients had completed the SAHD and most of the relevant measures; because the order of administration was varied, missing data are not likely to be systematically biased).

The measures administered included the following: the SAHD, 9 , 10 the Structured Clinical Interview for DSM-IV [ Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition ] (SCID), 12 the Hamilton Depression Rating Scale (HDRS), 13 the Beck Hopelessness Scale (BHS), 14 the Duke-University of North Carolina Functional Social Support Questionnaire (FSSQ), 15 the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale, 16 the Brief Pain Inventory, 17 the Memorial Symptom Assessment Scale, 18 the Karnofsky Performance Rating Scale (KPRS), 19 and an abbreviated version of the McGill Quality of Life Questionnaire. 20 Assessments were conducted jointly by 2 investigators to establish reliability. Demographic and medical data were elicited from subjects and hospital charts. Patients diagnosed with major depression (based on SCID interviews) were referred to the institution's psychiatrist for further evaluation and treatment.

Because the distribution of SAHD scores was skewed, nonparametric statistics were used for most analyses. Spearman correlation coefficients were used to quantify the association between SAHD scores and independent variables (eg, HDRS, BHS), and Kruskal-Wallis tests were used to assess whether SAHD scores differed across sex, race, and other categorical variables. Interrater reliability was assessed using intraclass correlation coefficients for the HDRS and KPRS and κ coefficients for SCID diagnosis. The reliability coefficients were as follows: HDRS, 0.80; KPRS, 0.76; and SCID, 0.55.

Based on SCID interviews, 15 (17%) of 89 patients met DSM-IV criteria for a major depressive episode (SCID interviews could not be completed for 3 subjects). The average HDRS score for this sample was 10.8 (SD = 6.4; range, 0-27), indicating moderate depressive symptoms. The average number of items endorsed on the BHS was 8.5 (SD = 6.4; range, 0-20), indicating a moderately high level of pessimism. Interestingly, patients who met the criteria for a diagnosis of major depression (based on SCID interviews) did not differ from nondepressed patients on the BHS (10.3 vs 8.2, t = 1.6, P = .12). Further, depression and hopelessness scores (HDRS and BHS, respectively) were only moderately, although significantly, correlated ( r = 0.29, P <.008).

The average total score on the SAHD for this sample of terminally ill cancer patients was 4.76 (SD = 4.3; range, 0-16; maximum possible range, 0-20). As expected, the distribution of SAHD total scores was positively skewed, with more than 55% (51 of 92) endorsing 3 or fewer items. Based on prior SAHD validation studies, we used a cutoff score of 10 to identify patients with a "high" desire for hastened death. Using this cutoff, 16 (17%) of 92 patients studied indicated a high desire for hastened death.

A SCID diagnosis of depression was significantly associated with desire for hastened death (χ 2 1 = 11.44, P = .001). Of 15 patients who met criteria for a major depressive episode, 7 (47%) were classified as having a high desire for hastened death and 8 (53%) were not. Conversely, among the 74 patients who were not depressed, 9 (12%) had a high desire for hastened death while 65 (88%) did not. Thus, patients with a major depression were 4 times more likely to have high desire for hastened death (47% vs 12%). Likewise, mean SAHD scores for patients with a major depression were 8.9 (SD = 5.4) compared with 3.9 (SD = 3.6) for nondepressed patients (Kruskal-Wallis χ 2 1 = 11.17, P <.001). Patients classified as having a high desire for hastened death also obtained significantly higher scores on the HDRS than patients with low desire for hastened death (16.7 vs 9.6, t 85 = 4.20, P <.001) and endorsed significantly more items on the BHS (13.6 vs 7.5, t 84 = 5.58, P <.001). There was a significant correlation between SAHD total scores and scores on both the HDRS and BHS ( r = 0.49, P <.001 and r = 0.54, P <.001, respectively), with more depressed and hopeless patients endorsing more SAHD items.

Finally, using a 2-way analysis of variance we examined the role of hopelessness, in addition to depression, in predicting a desire for hastened death. Patients who endorsed more than 8 items on the BHS were classified as "hopeless" and compared with patients who endorsed 8 or fewer items. This analysis, which accounted for 37% of the variance in SAHD scores, revealed significant main effects for both depression and hopelessness (F = 9.33, P = .003 and F = 15.16, P <.001, respectively), but no interaction effect (F = 0.07, P = .96). This analysis indicates that both depression and hopelessness provide independent contributions to predicting desire for hastened death. Table 2 displays the relationships among depression, hopelessness, and desire for hastened death, demonstrating that patients with neither depression (based on the SCID) nor hopelessness had low levels of desire for hastened death. The presence of either of these factors increased desire for hastened death somewhat, while the presence of both depression and hopelessness increased desire for hastened death considerably.

A stepwise multiple regression analysis was conducted to identify the strongest predictors of desire for hastened death. This analysis resulted in a significant model that accounted for more than 51% of the variance in SAHD scores (F = 18.79, P <.001). The variables remaining in this model were hopelessness (partial F = 29.77, P <.001) and depression (partial F = 13.94, P <.001), as well as overall physical functioning (KPRS: partial F = 5.77, P = .02) and social support (FSSQ: partial F = 4.35, P = .05). With these 4 variables included in the model, no other clinical or demographic variables contributed significantly to the prediction of SAHD scores. Of note, these findings were comparable when data were analyzed only for the subset of patients who reported pain.

The univariate correlations between SAHD scores and the independent variables studied are reported in Table 3 . Of the demographic variables measured, only race was significantly associated with desire for death (whites endorsed significantly more SAHD items than nonwhites, 5.5 vs 3.1, Kruskal-Wallis χ 2 1 = 8.03, P = .004). The strongest correlates of desire for hastened death were measures of spiritual well-being and quality of life (both negatively correlated with SAHD scores) and the perception of being a burden to others, physical symptoms, and symptom distress (all of which were positively correlated with SAHD scores). There was no significant association between desire for hastened death and pain (Kruskal-Wallis χ 2 1 = 0.11, P = .75) or pain intensity "on average" for patients who reported pain ( r = 0.16, P = .20), nor with perceived quality of social support ( r = −0.06, P = .64). Of note, there were few differences when these correlations were recalculated for only those patients who did not meet the criteria for a major depressive episode ( Table 3 ).

In a sample of terminally ill cancer patients receiving aggressive, inpatient palliative care, we found substantial rates of clinical depression (17%) and desire for hastened death (17%). Depressed patients were 4 times more likely to have high desire for hastened death compared with nondepressed patients (47% vs 12%). Hopelessness (characterized as a pessimistic cognitive style rather than an assessment of one's poor prognosis) also appears to be an integral determinant of desire for hastened death. We found that both depression and hopelessness provided independent contributions to predicting desire for hastened death. Among patients who were neither depressed nor hopeless, none had high desire for hastened death, whereas approximately one fourth of the patients with either one of these factors had high desire for hastened death, and nearly two thirds of patients with both depression and hopelessness had high desire for hastened death.

We also found a number of social, physical, and psychological variables associated with desire for hastened death, including spiritual well-being, quality of life, physical symptoms, symptom distress, physical functioning, and perception of oneself as a burden to others. However, we found no significant association between desire for hastened death and either the presence of pain or pain intensity. This finding may reflect the quality of pain management practiced by the study institution (average pain intensity was <5, corresponding to relatively good physical functioning and quality of life). 21 Alternatively, these results may simply confirm previous research that found little or no relationship between pain and desire for hastened death or interest in assisted suicide. 8 , 22 , 23

Our finding, that both depression and hopelessness provide independent contributions to desire for hastened death, is perhaps the most novel and clinically relevant contribution of these data. Chochinov et al 8 found a strong association between desire for hastened death and clinical depression in terminally ill patients with cancer (58% of their patients with high desire for hastened death were diagnosed with a major depression compared with 44% in our sample), but that study did not include a measure of hopelessness. In a subsequent analysis, Chochinov and colleagues 24 found significant associations between depression, hopelessness, and suicidal ideation (rather than desire for death), concluding that "the correlation of depression with suicidal ideation is based largely on variance that it shares with hopelessness." Ganzini et al 25 found that hopelessness was significantly associated with "interest in physician assisted suicide" among patients with amyotrophic lateral sclerosis while depression was not, but this study used responses to hypothetical questions regarding interest in assisted suicide rather than a measure of desire for hastened death and used a measure of depression that did not generate a clinical diagnosis.

Disentangling the constructs of depression and hopelessness is particularly difficult in the context of terminal illnesses. Because terminal illness is by definition incurable, many individuals might confuse a "hopeless" prognosis with a "hopeless" cognitive style. Our experience and these data suggest that patients often maintain hope during the final weeks of life, although what they hope for may evolve as death nears. Indeed, less than half of our sample endorsed a large number of items on the BHS, a measure of pessimism. Further, because hopelessness can be a symptom of depression, these 2 constructs are often assumed to be more overlapping than may be justified. We found only a modest correlation between these 2 measures ( r = 0.29), indicating that depression and hopelessness are distinct constructs.

The data and conclusions described here are tempered by methodological limitations. First, although we measured desire for hastened death, we cannot determine which, if any, of these patients would have requested assisted suicide if this option were legal. A related concern is whether the SAHD can differentiate individuals who have "accepted" death from those who desire a hastened death. While some SAHD items might be endorsed by those who accept their death yet do not want to hasten death, most items assess interest in hastening death. By analyzing these data using a cutoff score to reflect a high desire for hastened death, the likelihood of confusing "acceptance" of death with desire for hastened death is thereby minimized. Another methodological issue concerns the generalizability of our findings, as our sample was recruited from a state-of-the-art palliative care facility. This sample represents an ethnically and economically diverse group that is likely representative of terminally ill cancer patients receiving high-quality palliative care. It is possible that the prevalence of desire for hastened death and depression would be even greater in patients receiving less adequate palliative care.

Because depression and hopelessness are not identical, clinical interventions may need to target these issues selectively. There is a general consensus that individuals with a major depression can be effectively treated, even in the context of terminal illness, but no research has addressed whether such treatment influences desire for hastened death. 26 - 28 A more challenging question is how to address hopelessness, in the absence of depressive illness, among terminally ill patients. Interventions to address hopelessness have not been systematically studied and represent an important new frontier in palliative care. Psychotherapeutic interventions such as cognitive behavioral therapy targeting pessimistic cognitions or spirituality-based interventions to address existential issues such as a loss of meaning may help decrease hopelessness. 27 - 29 Further research regarding the impact of treatments for depression and/or hopelessness on desire for hastened death is needed to formulate appropriate clinical responses to patients who express a desire for hastened death.

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Investigating spiritual care perceptions and religious coping methods among the relatives of terminally ill patients during the COVID-19 pandemic: the case of Turkey

Affiliations.

• 1 Health Sciences Institute, Erciyes University, 38033, Kayseri, Turkey.
• 2 Faculty of Health Sciences, Erciyes University, 38033, Kayseri, Turkey. [email protected].
• PMID: 38778311
• PMCID: PMC11112817
• DOI: 10.1186/s12904-024-01463-x

Background: The COVID-19 pandemic in Turkey and around the world has had a profound impact on the families of terminally ill patients. In this challenging period, investigating the spiritual care perceptions and religious coping methods of patients' relatives is an essential step towards understanding the experiences in this process with the additional challenges brought by the pandemic and developing appropriate support services. This study aims to determine the spiritual care perceptions and the use of religious coping methods among the relatives of terminally ill patients in Turkey during the COVID-19 pandemic.

Methods: The sample of this descriptive and correlational study consisted of the relatives of terminally ill patients (n = 147) who were receiving treatment in the Anesthesiology and Reanimation Intensive Care Unit of a state hospital in Turkey. Spirituality and Spiritual Care Rating Scale and the Religious Coping Scale to them using face-to-face interviews. Mann-Whitney U test, Kruskal-Wallis test, and Spearman's correlation analysis were used to analyze the data.

Results: The mean age of the participants was 38.84 ± 11.19 years. Also, 63.3% of them were employed. The participant's total score on the Spirituality and Spiritual Care Rating Scale was 57.16 ± 6.41, and it was determined that the participants' level of perception of spirituality and spiritual care concepts was close to good. When the Religious Coping Scale scores of the participants were examined, it was found that both Positive Religious Coping levels (23.11 ± 2.34) and Negative Religious Coping levels (9.48 ± 1.47) were close to high. There was no correlation between the scores of RCOPE and SSCRS (p > 0.05).

Conclusion: As a result, it was determined that the level of perception of spirituality and spiritual care concepts of the relatives of terminally ill patients during the COVID-19 pandemic was close to sound, and their Positive Religious Coping levels were high. Epidemics are a reality of the world, and it is essential to learn lessons from this process and take precautions for the future. We offer a perspective to realize the coping power of religion and spirituality, which are integral parts of life. The needs of terminally ill patients' relatives, a sensitive group, become visible.

Keywords: Death; Religiosity; Spirituality; Terminal illness.

© 2024. The Author(s).

• Adaptation, Psychological*
• COVID-19* / epidemiology
• COVID-19* / psychology
• Family* / psychology
• Middle Aged
• Spirituality*
• Surveys and Questionnaires
• Terminally Ill* / psychology