17.2: End-of-Life Care
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Learning Objectives
By the end of this section, you will be able to:
- Describe various end-of-life care options
- Explain the typical decisions dying individuals and their families face
- List the moral and ethical considerations that arise at the end of life
Clara is seventy-five years old and has moved in with her adult son Hien and his partner. She’s nearing the end of four years living with lung cancer and no longer wishes to receive treatment. She wants to be in a comfortable and peaceful environment to enjoy the company of friends and family for as long as possible. This is a difficult mental shift for Hien and his siblings, who have been focused on their mother’s treatment to prolong her life. But they know they now need to discuss challenging questions to best understand their mother’s wishes and determine how to act on those, and that doing so can cause family strife: Who makes the final decisions about their mother’s care? How far should her doctors go to keep her alive and pain-free? What should they do if she indicates she can no longer bear her suffering? When the end comes, what will happen to her possessions, and how should her family remember and celebrate her life in accordance with her wishes?
As Clara, Hien, and their family are learning, the end of life can be complicated by a variety of care options to choose from and decisions to be made. In addition, those who are dying—and their loved ones and medical teams—must think through ethical decisions that often call upon cultural and religious values.
Care Options
While many people say they want to die at home, asleep in their own beds (Fleming et al., 2016; Sanderson et al., 2019), death can occur in unpredictable ways, like accidents and heart attacks. In contrast, when a person may be facing death after a period of illness or decline, the dying person and/or their loved ones may be able to make some choices about what care they receive and where.
Hospital Care
Worldwide, approximately 54 percent of deaths occur in hospitals (Broad et al., 2013), although rates vary by country; for example, the Netherlands and Japan record 23.9 percent and 68.3 percent hospital death s, respectively (Wilson et al., 2022). There are both practical and cultural reasons for these variations. In Japan, community-based long-term care facilities often have long waiting lists (Wammes et al., 2022), and the cultural value of venerating parents dictates that family members care for elderly relatives themselves and not place them in nursing homes (Ng & Indran, 2021). In the United States, about 30 percent of deaths occur in the hospital, compared to about 31 percent at home and about 21 percent in a long-term care setting such as a nursing home; 7 percent occur in hospice settings and the remainder in other environments (Cross & Warraich, 2019).
Hospitals are facilities designed to treat illnesses and injuries, rather than places designated to support the process of death. The priority of the medical staff is typically to save lives, and death is often regarded as a failure (Crimmins et al., 2021; Schallmo et al., 2019). Practitioners may therefore recommend aggressive diagnostic or treatment procedures that, if not aligned with a dying person’s wishes, can be unhelpful at best and painful at worst (Cardona-Morrell et al., 2016; Walling et al., 2010). Nurses sometimes report feeling insufficiently trained to handle end-of-life care (Chan et al., 2020), and patients and their families sometimes sense that uncertainty (Hansen et al., 2020). Family members also report that medical staff don’t always provide clear communication about the patient’s condition or prognosis (Carey et al., 2018; Dose et al., 2015; Hansen et al., 2020; Heckel et al., 2020). Parents of children who die in hospitals, particularly from long-term or chronic conditions like cancer, report stronger grief symptoms, anxiety, depression, and stress than those whose children died at home (Morris et al., 2019).
Hospitals are often very large structures that run on schedules and control the number and age of visitors, so patients may not be able to be with loved ones or surrounded by familiar comforts of home (Iverson et al., 2014). These factors can render a hospital death lonely and impersonal (Figure 17.11). These findings were exacerbated during the quarantine and social isolation protocols enacted during the COVID-19 pandemic. For instance, during the first wave of the COVID-19 pandemic in Spain, a frequent result of preventive measures and patient isolation protocols enacted by authorities was that people died alone (Consuegra-Fernández & Fernandez-Trujillo, 2020). Health-care professionals tried to replace the physical presence of family members with creative options like video calls, but no solutions were considered adequate (Wakam et al., 2020). One consequence of the way hospitals function is that when hospitals are at capacity due to a pandemic or other health crisis, the grieving process of dying individuals and their loved ones may not be prioritized due to the more pressing health crisis.
Dying at Home
Worldwide, about 53 percent of deaths occur in the home, more commonly in lower-income countries and countries in southeast Asia and sub-Saharan Africa (Adair, 2021). The frequency of home death is influenced by factors like the availability of hospitals and long-term care facilities, cultural views about who bears responsibility for caring for sick family members, and the generally lower financial cost of in-home care (Ng & Indran, 2021; Wachterman et al., 2022; Wammes et al., 2022). In the United States, the percentage of people dying at home increased from 23.8 percent to 30.7 percent between 2003 and 2017 (Cross & Warraich, 2019). Similarly, a global study noted that the percentage of home deaths rose from 30.1 percent in 2012–2013 to 30.9 percent in 2018–2019, and then further to 32.2 percent during the pandemic (2020–2021).
Medical services provided in the patient’s residence, also known as home care , can be given by family or friends, paid professionals, or a combination of the two, and it may be viewed as more desirable than a hospital or nursing home death (Figure 17.12). A patient may get much more individual attention at home than in a hospital or nursing home, and loved ones may be able to provide it, possibly reducing distress. People dying at home report less physical discomfort and higher quality of care than people dying in hospitals (Pinto et al., 2023; Teno, 2004; Wright, 2010). Schedules and rules about visitors are often more negotiable, and the general surroundings are likely to be familiar and more personal than in a hospital setting.
However, a home death isn’t always an ideal option for everyone. A small home may not have space for a hospital bed. Family members or friends may live too far away, have other obligations, or be unable (or unwilling) to take on the demands of caregiving for a dying loved one. Although professionals may be available to provide care in the home, cost and cultural norms about privacy may make this avenue unsuitable for some. Additional factors that could make people choose alternatives other than home include administering certain medications, a perception that specialized care is not an at-home option, and feelings of fear, frustration, and isolation at home (Pinto et al., 2023).
Hospice and Palliative Care
Another type of care, hospice care , may be provided to people whose conditions are uncurable or whose treatment would produce more suffering than it relieves. Part of the goal of hospice is maintaining quality of life , a person’s perception of how good their life is in the context of their values, goals, and cultural norms. Hospice care includes managing physical symptoms, including pain, as well as addressing the spiritual and emotional needs of the patient and their loved ones (Figure 17.13). It can be provided in a special facility, in the home, or even sometimes in a hospital setting. A doctor may suggest hospice care if the patient is expected to live for fewer than six months. The decision to enter hospice care is typically made by the patient and their doctor together, sometimes with the patient’s family (CaringInfo, 2023).
The hospice movement began in England in 1967. It was started by Cicely Saunders, whose combined training in nursing, social work, and medicine inspired her to use her learning to alleviate pain and suffering at the end of life. Florence Wald, a nurse and supporter of Saunders’ work, founded the first U.S. hospice facility in Connecticut in 1974 (Buck, 2011; Miličević, 2002; von Gunten & Ryndes, 2005). In the 1980s, Medicare (the U.S. federal government’s health insurance program for people age sixty-five and older) began paying for many of the costs of hospice care, making it more accessible to a wider range of people (Connor, 2008). The percentage of terminally ill people dying in hospice care in the United States increased from 0.2% to 8.3% from 2003 to 2017, suggesting its wider use (Cross & Warraich, 2019).
Care typically provided in hospice is palliative care , which relieves pain and provides comfort but doesn’t attempt to cure the patient. However, hospice care and palliative care aren’t the same thing. Hospice care is specifically for people with a terminal illness who are expected to live fewer than six months, while palliative care can be given to anyone with a chronic condition, regardless of prognosis (Casey, 2019). Palliative care can be provided alongside care that attempts to cure the patient, and it isn’t provided only in hospice settings. However, a person in hospice care wouldn’t receive treatment meant to extend their life or stop the illness, such as chemotherapy.
In the United States, the number of people using palliative care has increased since the early 2000s; by 2014, nearly 70 percent of all hospitals had palliative care programs (Dumanovsky, et al., 2016). Palliative care is becoming a prevalent option for children, including in Europe (Arias Casais et al., 2020). The need is anticipated to increase by as much as 47 percent by the year 2040, mostly due to the growing elderly population and the prevalence of medical conditions associated with aging, especially cancer and dementia (Etkind et al., 2017).
End-of Life Decisions
People also need to make other decisions regarding the end of life. For example, who will take care of the deceased person’s surviving loved ones, including pets? Accounts for services like phone and electricity may need to be canceled or put in someone else’s name. Assets like property, money, or special belongings may need to be distributed or their ownership transferred. Ideally, decisions about these issues will be made in conversation with loved ones to ensure the dying person’s wishes are honored. In many cases, last wishes also require legal documentation.
Most such documents are versions of an advance directive , a legal form that specifies a person’s wishes if the person cannot communicate them because they are unconscious or cognitively impaired (National Institute on Aging, 2022). The matters addressed in advance directives don’t just apply to older adults or to people with a terminal diagnosis. Death can occur at any point in the lifespan, sometimes suddenly. Although it can be distressing to think about the scenarios presented in advance directives, it’s helpful to do so before a crisis occurs. There are different policies regarding advance directives both within and outside of the United States, so getting location-specific information is important for anyone preparing these documents.
Link to Learning
These links contain information and resources to address a variety of questions related to advance directives, including definitions of terms, forms, and (for U.S. residents) state-specific guidelines.
- Learn more about advance directives on the NIA Advance Care Planning website.
- The AARP website gives state-specific-information on how to create advance directives.
- CaringInfo.org, a program of the National Hospice and Palliative Care Organization, has a detailed website on how to create an advance directive.
Wills
A will is a legal document specifying how to handle a person’s possessions, financial assets, real estate, and/or dependents after death. In some cultures, a will may even cover ideas. For example, some Jewish people make an “ethical will” to pass down their life lessons and values (Reischer & Beverley, 2019). A will may also specify what the person wants done with their body (e.g., burial, cremation, donation to science) and the type of funeral or memorial arrangements they would like. In the United States, anyone considered a legal adult, which is eighteen or older in most states, can make a will (American Bar Association, 2013).
A will names an executor , a person responsible for fulfilling the conditions in the will such as by making charitable donations and giving possessions to heirs. The executor is usually a family member or trusted friend. After a person dies, the executor may need to file the person’s will and a copy of the death certificate with the probate court , which oversees matters such as the distribution of property and the assignment of a legal guardian for any minor children. The court then gives the executor the authority to enact the terms in the will and fulfill other duties, such as selling the deceased person’s house to pay off debts. This is not necessary for all wills, and the rules may be different between states.
Sometimes people assume that a will is unnecessary because family members will agree about how to divide up the deceased person’s assets, but in fact they may disagree. If a person dies without a will, also called dying intestate , no one can access their assets until the probate court decides what should be done with them and who has a legitimate claim to them. This can take several months and means that family members may be cut off from financial assets such as bank accounts and credit cards if they aren’t already recognized as users on those accounts.
Intersections and Contexts: Cultural Differences in Preference for End-of-life Care
Cultural factors may influence feelings and beliefs about end-of-life care. Latine and Black Christians, for example, tend to have a strong belief in fatalism , the idea that life and death are God’s will (DeSouza et al., 2020; Jennings et al., 2018; LoPresti et al., 2016; Soto-Perez-de-Celis et al., 2017). This belief may cause people to reject hospice care, euthanasia, and advance directives, since whatever happens is “meant to happen.” Similarly, mistrust of the health-care system due to a long history of racist practices may make people of color suspicious of end-of-life care (Allen et al., 2016; Centers for Disease Control and Prevention, 2022; Searight, 2022).
People of color are more likely to face barriers like lack of insurance, limited income, and lack of knowledge about available options (Allen et al., 2016; LoPresti et al., 2016). In some cultural groups, discussing death is taboo, and families may deliberately choose to withhold a terminal diagnosis from the patient (Allen et al., 2016; Cheng et al., 2020; Jennings et al., 2018; Searight, 2022; Soto-Perez-de-Celis et al., 2017).
Black, Latine, and Asian families are also more likely to prefer a family-centered approach to medical decision-making and caregiving (Allen et al., 2016; Cheng et al., 2020; DeSouza et al., 2020; Searight, 2022; Soto-Perez-de-Celis et al., 2017). They may assume they don’t need to talk about end-of-life issues because everyone should know what the patient wants; however, this isn’t always the case (Cheng et al., 2020; DeSouza et al., 2020). The Japanese concept of ishin-denshin , an unspoken form of mutual understanding, is consistent with this assumption (Cheng et al., 2020). Health-care providers may similarly seek the family’s opinion instead of the patient’s. In some countries, such as Taiwan, physicians are forbidden from allowing patients to make decisions regarding their own care (Cheng et al., 2020).
Living Will
A living will is a legal document that specifies what types of life-sustaining medical treatment, such as dialysis or feeding tubes, a person does or doesn’t want. It is used in situations where a person is unable to express their wishes themselves. For example, the document can specify particular pain management preferences, or whether the individual wishes to be intubated if they are no longer able to eat or drink.
Do Not Resuscitate (DNR), Do Not Intubate (DNI), and Do Not Hospitalize (DNH) Orders
The abbreviation “DNR” stands for “ do not resuscitate (DNR) .” It means that if a person’s heart stops beating or if they stop breathing, they don’t want CPR or other lifesaving measures performed on them. A DNR is similar to a living will but addresses only the issue of resuscitation if the heart stops. Without documentation that a person doesn’t want a particular treatment, medical personnel are required by law to attempt life-saving measures (Figure 17.14). A DNR order is usually kept in a patient’s medical file, but it may not be accessible to everyone when needed, such as paramedics or emergency room staff. Some people have DNR bracelets they always wear to make their wishes known.
A related directive, a “ do not intubate (DNI) ” order, prevents health-care providers from inserting breathing tubes into a patient’s nose or mouth. This may be requested instead of or in addition to a DNR order.
Finally, a “ do not hospitalize (DNH) ” order prohibits admitting an individual to a hospital. It is usually used in long-term care settings like nursing homes and is meant to prevent a person from receiving unwanted aggressive medical care if their chances of recovery are low.
Why do people choose these orders? Hospital patients with DNR orders identify several reasons, including a desire to avoid unnecessarily prolonging life and suffering, a wish to avoid burdening loved ones and health-care workers, and a perception of resuscitation as a painful, violent treatment that’s ultimately unlikely to succeed (Downar et al., 2011).
Health-Care Proxy
The term health-care proxy , also called a durable power of attorney for health care , is a document that legally authorizes a person to make health-care decisions for someone else. The authorized person, is a trusted family member or friend chosen by the individual.
It may seem unnecessary to have both a living will and a health-care proxy. However, a health-care proxy can cover situations not identified in the living will, which applies only to life-sustaining treatment. For example, a person with Alzheimer’s disease who needs surgery for a broken arm may not be able to consent to treatment due to cognitive impairment. Because this situation isn’t life-threatening, it’s not covered by a living will, but a health-care proxy could consent to the surgery.
Not having a designated health-care proxy can result in family conflicts about who is authorized to make health-care decisions. Even if a person has advance directives, a family may experience distress or even disagreement about decisions to withdraw or withhold treatment. End-of-life decisions sometimes have to be made on short notice. Discussing the patient’s wishes beforehand may reduce the family’s distress somewhat, but not completely (Iverson et al., 2014; Sulmasy et al., 2017).
Organ Donation
Another end-of-life matter is organ donation . According to the United States Health Resources and Services Administration Division of Transplantation, more than 103,000 people are on the national organ transplant waiting list, most of whom need a kidney, and seventeen people die each day for lack of an available transplant (Health Resources & Services Administration, 2023). Many U.S. states allow people to designate on their driver’s license whether they want to be an organ donor when they pass away (Figure 17.15). If a deceased person doesn’t have a driver’s license or hasn’t expressed a preference, their family members may need to make this decision at the time of death.
If a person doesn’t have advance directives, family members may need to presume what they would want and might make decisions that contradict what they would have preferred. Even if the person has told others what they want, their wishes may not be followed if they aren’t stated in formal legal documents. Regardless of individual feelings about end-of-life issues, making these decisions and preparing legal documents in advance can alleviate challenging decision-making for the loved ones of a dying individual.
Life Hacks: Talking About End-of-Life Issues
Discussing end-of-life issues with family members can be distressing, and people may not feel the need if things are going well. However, we don’t always make good decisions during a crisis. And if someone is unable to express their wishes, decisions will fall on family members who may not be sure about or agree about what to do.
Once a person reaches adulthood, their parents or guardians no longer have the right to make health-care decisions for them. They may also disagree about treatment options, and if relationships are strained, an adult child may not want their parents to make decisions for them at all. For these reasons, anyone of legal age should designate a health-care proxy and prepare a will and living will (Mayo Clinic Staff, 2022; National Institute on Aging, 2022).
Here are some practical suggestions for getting started, both for expressing your wishes and for learning about what your family members might want for themselves.
A natural opener might be, “In my lifespan development class, we’re learning about death, and that got me thinking about some things.” You can move on to, “I just finished reading about living wills, and now I’m wondering if you have a living will or anything like that.” Or, “The textbook encouraged us to talk with our families about end-of-life issues; would you be willing to have that conversation with me?”
If someone you know or a recent news story dealt with end-of-life issues, you can say, “I was thinking about what happened to ______ after they were in that accident and their family had to decide whether to keep them on life support,” or “Things are still a big mess in ______’s family because ________ didn’t have a will and now they have to wait for probate court to decide how to divide up the estate.” Examples about other people might create openings in conversations that are more comfortable than asking the person directly about their own wishes and plans.
Once you’re able to have a conversation, be sure to include both practical concerns (types of medical treatment, who makes decisions) and more philosophical concerns (what’s important in life, how much pain or discomfort is tolerable). Be sure to include your own views and wishes as well as asking your loved ones about theirs. You don’t need to discuss everything at once. Most people need time to think and decide about these things.
Talking about end-of-life wishes isn’t a one-time conversation. People’s desires or circumstances may change, and legal documents like health-care proxy forms typically require several conversations and legal consultation. You can express your own concerns, too: “I’m worried I won’t know what to do if something happens to you,” or “If you don’t have a DNR order, health-care workers are legally required to try to resuscitate you.” You can also offer to discuss your own wishes first. For instance, “I don’t want you to wonder about my wishes, so that’s why I want to talk about this.”
One final point: Once you and your loved ones have completed the legal documents you decide are necessary, make sure several people know where they are so they can be accessed when needed.
The Ethics of Dying
The circumstances under which death occurs may have ethical aspects. Medical technology has advanced to the point where we can keep people alive for longer periods of time. However, a longer life doesn’t necessarily mean a better quality of life. In some cases, life-sustaining treatment may come with significant consequences, such as requiring painful medical procedures or being reliant on medical interventions for eating and breathing. The financial cost of such treatment may be prohibitive for many people. If a person needs significant medical treatment to be kept alive, the risks and benefits need to be clearly conveyed to them, family members, and other loved ones or potential caregivers.
One ethical question is whether to limit care for people who have little or no chance of recovery. Such rationing of care relies on the premise that people who have a chance of recovery should receive priority in the use of health-care resources. This issue received increased attention during the COVID-19 pandemic because older adults had disproportionately more severe infections than the general population and the health-care system was overwhelmed (Jecker, 2022). The ethical aspects of this scenario are obvious and serious; the United States Department of Health and Human Services has conducted investigations to ensure that patients’ civil rights aren’t being violated if states do pursue explore rationing of care (Fink, 2020).
Similarly, if death is inevitable and the patient is in a great deal of pain, questions may arise about whether they should be allowed to end their life, and what role, if any, medical personnel should play in that process.
Euthanasia
Ending life in a manner to relieve pain and suffering is called euthanasia . There are two types of euthanasia, passive and active. In passive euthanasia , the patient chooses to withdraw life-sustaining treatment, such as dialysis or a feeding tube, or not start such treatment, such as by following a DNR order. In active euthanasia , an outside agent like a lethal dose of a drug is given to cause death.
Passive and active euthanasia differ in a fundamental way that has significant legal implications. In passive euthanasia, the patient’s cause of death is the medical condition requiring them to receive life-sustaining treatment. For example, if someone has amyotrophic lateral sclerosis (ALS, also called “Lou Gehrig’s disease”) and can’t breathe without a ventilator, taking away the ventilator will result in their death, but the cause of death is ALS. If a person with ALS is given a lethal amount of a drug, however, then the cause of death is the overdose. Passive euthanasia is legal in all fifty states and the District of Columbia (Srivastava, 2014); however, active euthanasia is illegal.
Assisted Suicide
Related to euthanasia is assisted suicide , also called medical aid in dying (MAID) , in which a doctor prescribes medication knowing the patient intends to use it to end their life. The primary difference between active euthanasia and assisted suicide is that in assisted suicide, the patient self-administers the lethal treatment, while in active euthanasia, another person does so (Emanuel et al., 2016).
Medical professionals disagree about the ethicality of assisted suicide; some feel it violates the ethical principle of doing no harm, while others feel it’s consistent with the need to relieve suffering (American Academy of Hospice and Palliative Medicine, 2016; American Medical Association, 2022, Opinion 5.7; Lawry, 2023). As of 2023, assisted suicide/MAID is legal in the District of Columbia and ten states: California, Colorado, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont, and Washington (Americans United for Life, 2023; ProCon.org, 2023; Death with Dignity, 2023). It’s also legal in Canada and several countries in Europe, but illegal in most other places.
A highly publicized case of assisted suicide occurred in 2014 when activist Brittany Maynard was diagnosed with a brain tumor. She underwent several operations, including removal of part of her temporal lobe, but the tumor came back. After being told she had only a few months to live, Maynard decided to pursue assisted suicide/MAID. Her home state of California didn’t allow this at the time, so she and her husband moved to Oregon to take advantage of its MAID law. Maynard wrote about her experience in an editorial for CNN, noting that she had to take all the usual steps to establish residency in Oregon such as getting a new driver’s license, and her husband had to put his job on hold while they moved. She emphasized that she wasn’t suicidal but wanted to die on her own terms (Maynard, 2014). Her husband echoed this wish in a later editorial:
To be clear, Brittany, and any terminally ill individual in her situation, is not choosing between living and dying. The brain tumor was ending Brittany’s life. The option of living was no longer available to her. She was only choosing between two different methods of dying . One method would be gentle, peaceful. The other would result in being tortured to death by the increasingly intense symptoms she was already experiencing: unrelenting pain, nausea, sleep deprivation, seizures, and impending blindness and paralysis. Those were her reasons for moving to Oregon to have this option available to her. (Diaz, 2019, pp. 8–9)
Brittany Maynard ended her life on November 1, 2014.
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