Facing Death

In this section, we’ll turn our attention from the process of dying to the actual death of the individual. We’ll examine various ways in which in which deliberate death can occur, along with the supportive practices that are available for those who are dying. We will also take a closer look at cultural and legal implications of end-of-life practices.^[1]

Advanced Directives

Advanced care planning refers to all documents that pertain to end-of-life care. These include advance directives and medical orders. Advance directives include documents that mention a health care agent and living wills. These are initiated by the patient. Living wills are written or video statements that outline the health care initiates the person wishes under certain circumstances (Figure 1). Durable power of attorney for health care names the person who should make health care decisions in the event that the patient is incapacitated. In contrast, medical orders are crafted by a medical professional on behalf of a seriously ill patient. Unlike advanced directives, as these are doctor’s orders, they must be followed by other medical personnel. Medical orders include Physician Orders for Life-sustaining Treatment (POLST), do-not-resuscitate, do- not-incubate, or do-not-hospitalize. In some instances, medical orders may be limited to the facility in which they were written. Several states have endorsed POLST so that they are applicable across heath care settings.^[2]

Despite the fact that many Americans worry about the financial burden of end-of-life care, “more than one-quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured those wishes in writing or through conversation” (p. 18).^[3]

Palliative Care

Palliative care is an interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness, with a goal of improving the quality of life for both the person and their family. Doctors who specialize in palliative care have had training tailored to helping patients and their family members cope with the reality of the impending death and make plans for what will happen after.^[4]

Palliative care is provided by a team of physicians, nurses, physiotherapists, occupational therapists, speech-language pathologists, and other health professionals who work together with the primary care physician and referred specialists or other hospital or hospice staff to provide additional support to the patient. It is appropriate at any age and at any stage in a serious illness and can be provided as the main goal of care, or along with curative treatment. Although it is an important part of end-of-life care, it is not limited to that stage. Palliative care can be provided across multiple settings including in hospitals, at home, as part of community palliative care programs, and in skilled nursing facilities. Interdisciplinary palliative care teams work with people and their families to clarify goals of care and provide symptom management, psychosocial, and spiritual support.

Hospice

In many other countries, no distinction is made between palliative care and hospice, but in the United States, the terms have different meanings and usages. They both share similar goals of providing symptom relief and pain management, but hospice care is a type of care involving palliation without curative intent. Usually, it is used for people with no further options for curing their disease or in people who have decided not to pursue further options that are arduous, likely to cause more symptoms, and not likely to succeed. The biggest difference between hospice and palliative care is the type of illness people have, where they are in their illness especially related to prognosis, and their goals/wishes regarding curative treatment. Hospice care under the Medicare Hospice Benefit requires that two physicians certify that a person has less than six months to live if the disease follows its usual course. This does not mean, though, that if a person is still living after six months in hospice he or she will be discharged from the service.

Hospice care involves caring for dying patients by helping them be as free from pain as possible, providing them with assistance to complete wills and other arrangements for their survivors, giving them social support through the psychological stages of loss, and helping family members cope with the dying process, grief, and bereavement. It focuses on five topics: communication, collaboration, compassionate caring, comfort, and cultural (spiritual) care. Most hospice care does not include medical treatment of disease or resuscitation although some programs administer curative care as well. The patient is allowed to go through the dying process without invasive treatments. Family members who have agreed to put their loved one on hospice may become anxious when the patient begins to experience death. They may believe that feeding or breathing tubes will sustain life and want to change their decision. Hospice workers try to inform the family of what to expect and reassure them that much of what they see is a normal part of the dying process.

The History of Hospice

Dame Cicely Saunders was a British registered nurse whose chronic health problems had forced her to pursue a career in medical social work. The relationship she developed with a dying Polish refugee helped solidify her ideas that terminally ill patients needed compassionate care to help address their fears and concerns as well as palliative comfort for physical symptoms. After the refugee’s death, Saunders began volunteering at St Luke’s Home for the Dying Poor, where a physician told her that she could best influence the treatment of the terminally ill as a physician. Saunders entered medical school while continuing her volunteer work at St. Joseph’s. When she achieved her degree in 1957, she took a position there.

Saunders emphasized focusing on the patient rather than the disease and introduced the notion of ‘total pain’, which included psychological, spiritual, emotional, intellectual, and interpersonal aspects of pain, the physical aspects, and even financial and bureaucratic aspects. This focus on the broad effects of death on dying individuals and their families has provided the foundation for modern day practices related to hospice care services.^[5] Saunders experimented with a wide range of opioids for controlling physical pain but also considered the needs of the patient’s family.

Saunders disseminated her philosophy internationally in a series of tours of the United States that began in 1963. In 1967, Saunders opened St. Christopher’s Hospice. Florence Wald, the Dean of Yale School of Nursing who had heard Saunders speak in America, spent a month working with Saunders there in 1969 before bringing the principles of modern hospice care back to the United States, establishing Hospice, Inc. in 1971. Another early hospice program in the United States, Alive Hospice, was founded in Nashville, Tennessee on November 14, 1975. By 1977 the National Hospice Organization had been formed.

Hospice Care in Practice

The early established hospices were independently operated and dedicated to giving patients as much control over their own death process as possible. Today, it is estimated that over 40 million individuals require palliative care, with over 78% of them being of low-income status or living in low-income countries. ^[6] It is also estimated, however, that less than 14% of these individuals receive it. This gap is created by restrictive regulatory laws regarding controlled substance medications for pain management, as well as a general lack of adequate training in regards to palliative care within the health professional community. Although hospice care has become more widespread, these new programs are subjected to more rigorous insurance guidelines that dictate the types and amounts of medications used, length of stay, and types of patients who are eligible to receive hospice care. Thus, more patients are being served, but providers have less control over the services they provide, and lengths of stay are more limited. Patients receive palliative care in hospitals and in their homes.

The majority of patients on hospice are cancer patients and they typically do not enter hospice until the last few weeks prior to death. The average length of stay is less than 30 days and many patients are on hospice for less than a week. Oftentimes medications are rubbed into the skin or given in drop form under the tongue to relieve the discomfort of swallowing pills or receiving injections. A hospice care team includes a chaplain as well as nurses and grief counselors to assist spiritual needs in addition to physical ones. When hospice is administered at home, family members may also be part, and sometimes the biggest part, of the care team. Certainly, being in familiar surroundings is preferable to dying in an unfamiliar place. But about 60 to 70 percent of people die in hospitals and another 16 percent die in institutions such as nursing homes. Most hospice programs serve people over 65; few programs are available for terminally ill children. ^[7]

Hospice care focuses on alleviating physical pain and providing spiritual guidance. Those suffering from Alzheimer’s also experience intellectual pain and frustration as they lose their ability to remember and recognize others. Depression, anger, and frustration are elements of emotional pain, and family members can have tensions that a social worker or clergy member may be able to help resolve. Many patients are concerned with the financial burden their care will create for family members. And bureaucratic pain is also suffered while trying to submit bills and get information about health care benefits or to complete requirements for other legal matters. All of these concerns can be addressed by hospice care teams.

The Hospice Foundation of America notes that not all racial and ethnic groups feel the same way about hospice care. ^[8] Certain groups may believe that medical treatment should be pursued on behalf of an ill relative as long as possible and that only God can decide when a person dies. Others may feel very uncomfortable discussing issues of death or being near the deceased family member’s body. The view that hospice care should always be used is not held by everyone and health care providers need to be sensitive to the wishes and beliefs of those they serve. Similarly, the population of individuals using hospice services is not divided evenly by race. Approximately 81% of hospice patients are White, while 8.7% are African American, 8.7% are multiracial, 1.9% are Pacific Islander, and only 0.2% are Native American. ^[9]

Family Caregivers

According to the Institute of Medicine,^[10] it is estimated that 66 million Americans, or 29% of the adult population, are caregivers for someone who is dying or chronically ill. Two- thirds of these caregivers are women. This care takes its toll physically, emotionally, and financially. Family caregivers may face the physical challenges of lifting, dressing, feeding, bathing, and transporting a dying or ill family member. They may worry about whether they are performing all tasks safely and properly, as they receive little training or guidance. Such caregiving tasks may also interfere with their ability to take care of themselves and meet other family and workplace obligations. Financially, families may face high out of pocket expenses.^[11]

As can be seen in Table 1, most family caregivers are employed, are providing care by themselves with little professional intervention, and there are high costs in lost productivity. As the prevalence of chronic disease rises, the need for family caregivers is growing. Unfortunately, the number of potential family caregivers is declining as the large baby boomer generation enters into late adulthood.^[12]

Euthanasia and Physician-Assisted Suicide

Euthanasia, or helping a person fulfill their wish to die, can happen in two ways: voluntary euthanasia and physician-assisted suicide. Voluntary euthanasia refers to helping someone fulfill their wish to die by acting in such a way to help that person’s life end. This can be passive euthanasia such as no longer feeding someone or giving them food. Or it can be active euthanasia such as administering a lethal dose of medication to someone who wishes to die. In some cases, a dying individual who is in pain or constant discomfort will ask this of a friend or family member, as a way to speed up what he or she has already accepted as being inevitable. This can have lasting effects on the individual or individuals asked to help, including but not limited to prolonged guilt. ^[13]

Physician-Assisted Suicide: Physician-assisted suicide occurs when a physician prescribes the means by which a person can end his or her own life. ^[14] This differs from euthanasia, in that it is mandated by a set of laws and is backed by legal authority. Physician-assisted suicide is legal in the District of Columbia and several states, including Oregon, Hawaii, Vermont, and Washington. It is also legal in the Netherlands, Switzerland, and Belgium.

The specific laws that govern the practice of physician-assisted suicide vary between states. Oregon, Vermont, and Washington, for example, require the prescription to come from either a Doctor of Medicine (M.D.) or a Doctor of Osteopathy (D.O.). ^[15] These state laws also include a clause about the designated medical practitioner being willing to participate in this act. In Colorado, terminally ill individuals have the option to request and self-administer life-ending medication if their medical prognosis gives them six months or less to live. In the District of Columbia and Hawaii, the individual is required to make two requests within predefined periods of time and also complete a waiting period, and in some cases undergo additional evaluations before the medication can be provided.

A growing number of the population support physician-assisted suicide. In 2000, a ruling of the U.S. Supreme Court upheld the right of states to determine their laws on physician-assisted suicide despite efforts to limit physicians’ ability to prescribe barbiturates and opiates for their patients requesting the means to end their lives.^[16] The position of the Supreme Court is that the debate concerning the morals and ethics surrounding the right to die is one that should be continued. As an increasing number of the population enters late adulthood, the emphasis on giving patients an active voice in determining certain aspects of their own death is likely.

Cultural Differences in End-of-Life Decisions

According to Searight and Gafford,^[18] cultural factors strongly influence how doctors, other health care providers, and family members communicate bad news to patients, the expectations regarding who makes the health care decisions, and attitudes about end-of-life care. In the United States, doctors take the approach that patients should be told the truth about their health. Outside the United States and among certain racial and ethnic groups within the United States, doctors and family members may conceal the full nature of a terminal illness as revealing such information is viewed as potentially harmful to the patient, or at the very least, is seen as disrespectful and impolite. Holland et al.^[19] found that many doctors in Japan and in numerous African nations used terms such as “mass,” “growth,” and “unclean tissue” rather than referring to cancer when discussing the illness to patients and their families. Family members actively protect terminally ill patients from knowing about their illness in many Hispanic, Chinese, and Pakistani cultures.^[20][21]

In the United States, we view the patient as autonomous in health care decisions,^[22] while in other nations the family or community plays the main role, or decisions are made primarily by medical professionals, or the doctors in concert with the family make the decisions for the patient. For instance, in comparison to European Americans and African Americans, Koreans and Mexican-Americans are more likely to view family members as the decision makers rather than just the patient.^[23][24] In many Asian cultures, illness is viewed as a “family event”, not just something that impacts the individual patient.^[25] Thus, there is an expectation that the family has a say in the health care decisions. As many cultures attribute high regard and respect for doctors, patients and families may defer some of the end-of-life decision making to the medical professionals.^[26]

According to a Pew Research Center Survey,^[27] while death may not be a comfortable topic to ponder, 37% of their survey respondents had given a great deal of thought about their end-of-life wishes, with 35% having put these in writing. Yet, over 25% had given no thought to this issue. Lipka (2014) ^[28] also found that there were clear racial and ethnic differences in end-of-life wishes. Whites are more likely than Blacks and Hispanics to prefer to have treatment stopped if they have a terminal illness. While the majority of Blacks (61%) and Hispanics (55%) prefer that everything be done to keep them alive. Searight and Gafford^[29] suggest that the low rate of completion of advanced directives among non-whites may reflect a distrust of the U.S. health care system as a result of the health care disparities non-whites have experienced. Among Hispanics, patients may also be reluctant to select a single family member to be responsible for end-of- life decisions out of a concern of isolating the person named and of offending other family members, as this is commonly seen as a “family responsibility.”^[30]