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Judson, K., & Harrison, C. (20 16). Law and ethics f or the health professions. (7th ed.). New York: McGraw- Hill.
Law&Et • ICS FOR HEALTH PROFESSIONS
• KAREN JUDSON CARLENE HARRISON
Death and Dyinq
LEARNING OUTCOMES After studying this chapter, you should be able to:
LO 12. I Discuss how attitudes toward death have changed
LO 12.2 Discuss accepted criteria for determining death.
LO 12.3 Determine the health care professional ‘s role in caring for the dying.
LO 12.4 Discuss benefits to end-of-life health care derived from
the right to die movement.
LO 12.5 Identify the major features of o rgan donation in the
LO 12.6 Discuss the various stages of grief.
FROM THE PERSPECTIVE OF . ..
ANGELA HAS BEEN A REGISTERED NURSE FOR 22 YEARS. Just as some hospital nurses are drawn to surgery, the emergency room, or the intensive care unit, Angela prefers hospice and palliative care. “Broadly speaking,” Angela explains, “medicine is about repair- ing, extending, and medicating, while end-of-life care is more about the patient as an individual, about basic human needs. In addition, it isn’t just the patient you are caring for; you are caring for the entire family group-everybody needs you.
“We live in a time when death has been removed from family and home for the most part,” Angela continues, “and people generally have less understanding of the process than a hundred years ago …. The family most often feels helpless and confused. The hospice nurse is able to help not just the patient, but the family, too, through a sad and often frightening time.”
Sometimes family members are hesitant about approaching a dying loved one. For example, Angela remembers a situation where the mother of two siblings in their thirties was dying. “When I arrived they were practically plastered against the walls of the room, clearly unsure of what they should be doing.” Angela encouraged the two family members to come to their mother’s bedside and comfort her. “The son pulled a chair to the side of the bed and held his mother’s hand. The daughter climbed onto the bed and cradled her mother … . I like to think that because I urged them to take a more active part in her passing that they found comfort after their mother was gone.”
Angela also recalls a patient in his eighties whose 32 family mem- bers joined him in his hospice room. “It was almost a living wake. They talked for hours about his life and the experiences they had each shared with him. They laughed and they cried and it was wonderful. This sharing in their loved one’s death was a beautiful experience for those left behind, and I hope it helped him in some way as well.”
From Angela’s perspective as a hospice nurse, the end of a life is a time when family members can come together to comfort their dying loved one and each other. She sees her job as a facilitator for this natural process.
From the perspective of the individual who is dying, the nearness of family members is comforting, as well as the presence of a nurse who is not uncomfortable with end-of-life issues.
From the perspective of surviving family members, Angela has heard many times that her attitude- don’t be afraid to comfort your loved one-gave them the courage to participate in the process, and comforted them after the death occurred.
Attitudes toward Death and Dying Prior to the twentieth century, death was an intimate experience for most families. Antibiotics and chemotherapies had not yet been dis- covered; genetically engineered drugs, organ transplantation, and life-support machines were still science fiction; and infectious diseases periodically decimated populations. Nearly every husband and wife,
LO 12. 1 Discuss how attitudes toward death have changed over time.
Chapter 12 I Death and Dying 323
mother and father, brother and sister had lost a loved one. Loved ones customarily died at home, surrounded by family members who bade them goodbye and then mourned their passing with funeral rituals and rites, including the following:
• Black has long been worn by undertakers, mourners, and pallbear- ers to show grief. In ancient times, it was also used as a disguise to protect against malevolent spirits that might be lurking nearby.
• An early custom for mourners was to go barefoot and to wear sackcloth and ashes. This was said to discourage the dead from becoming envious as they might be if mourners appeared at funer- als wearing new clothes and shoes.
• Pagan tribes began the custom of covering the face of the deceased with a sheet, since they believed that the spirit of the deceased escaped through the mouth. They often held the mouth and nose of a sick person shut, hoping to retain the spirit and thus delay death.
• In earlier times, traffic was halted for a funeral procession because any delay in transporting a soul might turn it into a restless ghost, reluctant to pass over into the next world.
• Wakes held today come from the ancient custom of keeping watch over the deceased, hoping that life would return. In England, the dead were always carried out of the house feet first; otherwise, their spirits might look back into the house and beckon family members to come with them.
• Pagan beliefs concerning funeral wreaths held that the circle formed by the wreath would keep the dead person’s spirit within bounds.
• The firing of a rifle volley over the deceased is similar to the tribal practice of throwing spears into the air to ward off spirits hovering over the deceased.
• In the past, holy water was sprinkled on the body to protect it from demons.
By the late twentieth century, individuals were more likely to die in the hospital, at least in the Western world. Once admitted to hospi- tals, the dying were isolated from family members and surrounded by machines designed to prolong life as long as possible. Consequently, modern technology has effectively hidden death from view, but in so doing it has also made the end of life a fearful prospect.
Attitudes toward death and dying vary with individuals, of course, but as each of us ages, we will likely begin to think of our own mortality and perhaps to wonder how the end will come. Will I die alone, in an impersonal, clinical hospital environment? Will my health care providers be so committed to preserving life that they delay my dying to an irrational degree? Will I suffer in pain? Will I feel a sense of tasks left unfinished and goals left unrealized, or will I experience a peaceful letting go?
Because the fears associated with death and dying are univer- sal, health care practitioners should evaluate their own attitudes to effectively and compassionately respond to dying patients and their families.
324 Part Three I Professional , Transitional, and Societal Health Care Issu es
Determination of Death Modern medical technology and life-support equipment may keep a person’s body “alive”-the heart may beat and blood may circulate- long after the brain ceases to function. This makes it difficult in some cases to determine the moment when death actually occurs. For this reason, in 1981 a Uniform Determination of Death Act was proposed by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical Research working in cooperation with the American Bar Association, the American Medical Association, and the National Conference of Commissioners on Uniform State Laws. The National Conference of Commissioners on Uniform State Laws has no legislative authority. Acts the commissioners propose must still be approved by state legislatures, and that is sometimes difficult to accomplish. States have their own criteria for determining when death actually occurs, but most have adopted the act’s definition of brain death as a means of determining when death actually occurs:
• Circulatory and respiratory functions have irreversibly ceased.
• The entire brain, including the brain stem, has irreversibly ceased to function.
When the brain is injured or shuts down due to lack of oxygen, a patient may appear near death when, in fact, he or she is in a coma, which is a condition of deep stupor from which a patient cannot be roused by external stimuli. Patients can and do recover from comas, as opposed to a persistent vegetative state. Persistent vegetative state (PVS) exists as a result of severe mental impairment, characterized by irreversible cessation of the higher functions of the brain, most often caused by damage to the cerebral cortex. In PVS, only involuntary bodily functions are present, and there exists no reasonable expecta- tion of regaining significant mental function.
Before pronouncing an unresponsive and unconscious patient dead, physicians may perform a series of tests to determine whether death has occurred. Death is indicated if the following signs are present. The patient:
• Cannot breathe without assistance.
• Has no coughing or gagging reflex.
• Has no pupil response to light.
• Has no blinking reflex when the cornea is touched.
• Has no grimace reflex when the head is rotated or ears are flushed with ice water.
• Has no response to pain.
Today the declaration of death occurs only when the last signs of brain and respiratory activity are gone. (An EEG and brain perfusion scan may also be administered to test for brain activity.) Technically, death results from lack of oxygen. When deprived of oxygen, cells cannot maintain metabolic function and soon begin to deteriorate.
After a patient is declared dead, family members (next of kin) may be asked to consent to an autopsy. An autopsy is a postmortem examination
LO 12.2 Discuss accepted criteria for determining death .
Uniform Determination of Death Act A proposal that established uniform gu idelines for det ermin ing when death has occurred.
brain death Final cessat ion of bodily activity, used to determine when death actually occurs; circulatory and respiratory functions have irreversib ly ceased, and the enti re b rain (incl ud ing t he brain stem) has irreversibly ceased t o function .
coma A conditio n of deep stupor from which t he patient can not be roused by external st imul i.
persistent vegetative state (PVS) Severe mental impa irment characterized by irreversible cessation of t he higher fu nctions of the brain, most often caused by damage to the cerebral cortex.
Chapter 12 I Death and Dying 325
Check Your Progress
I. Briefly explain how attitudes toward death and dying in the United States have changed over the years.
2. The , while not a law, was proposed as a universal means of determining when death actually occurs.
3. Distinguish between comatose and persistent vegetative state.
4. Define brain death.
5. Name six signs for which physicians may test that indicate death h”is occurred.
LO 12.3 Determine the health care professional’s role in caring for the dying.
palliative care Treatment of a term ina lly ill pat ient’s symptoms to make dyi ng more comfortable ; also cal led comfort care.
curative care Treatment directed toward curing a patie nt’s disease.
to determine cause of death and/or to obtain physiological evidence when necessary. Autopsies performed in hospitals may confirm or correct clinical diagnoses, thus providing a measure of quality assur- ance. Autopsy results can also highlight those cases in which diagno- ses tend to be incorrect, or treatments tend to be ineffective, thereby adding to scientific knowledge and revealing areas that need further study. In cases of suspicious deaths, autopsy results can provide infor- mation to help law enforcement authorities, such as cause and time of death. (Legal requirements concerning autopsies are discussed in Chapter 9.)
While autopsies must be performed in cases in which the death is suspicious or due to homicide, the number of autopsies performed in all other deaths each year has steadily declined. One reason that fewer autopsies are performed today is cost-insurance companies and gov- ernment health care programs usually do not pay for autopsies. (How- ever, when patients die in hospitals, often an autopsy can be performed free of charge.) Some clinicians argue that technological advances have made clinical diagnoses more accurate, so that postmortem diagnoses are less essential. Another reason for the decline in autopsies is that in many smaller hospitals, pathologists are not readily available.
Furthermore, even though autopsies can yield information that may clarify causes of death, reveal genetic disease that runs in families, or reassure survivors that their loved ones could not have been saved, when an autopsy is not mandated by law, family members are often reluctant to give consent. They may feel that their loved one has “suf- fered enough/’ that the physician already knows the cause of death, or that the procedure would interfere with viewing of the body during funeral rites. Health care practitioners may believe that these percep- tions of autopsies are inaccurate, but they must remain sensitive to the beliefs and emotions of surviving family members.
Caring for Dying Patients When it becomes evident that a patient’s disease is incurable and death is imminent, palliative care may serve the dying patient better than curative care. Curative care consists of treatments and procedures directed toward curing a patient’s disease. Palliative care, also called comfort care, is directed toward providing relief to terminally ill patients through symptom and pain management. The goal is not to cure, but to provide comfort and maintain the highest possible quality of life. Going
326 Part Three I Professional, Transitional, and Societal Health Care Issues
beyond relief of disease symptoms, palliative care includes relief of emotional distress and other problems, so that a patient’s last months and days may be as comfortable as possible.
Palliative care is also emerging as a way to help patients with serious illnesses live a more comfortable and fulfilling life, whether their diseases are terminal or not. For example, through palliative care:
Numbers of hospitals in the U.S. that have palliative care programs vary with geographic region.
• A 90-year-old stroke patient with limited mobility is able to continue living independently in his home.
• An ovarian cancer patient is more comfortable and can actu- ally continue working as she undergoes aggressive chemo- therapy treatment.
• A lung cancer patient receives counseling about his disease and help in navigating the complex U.S. health care system.
In many cases, choosing palliative care or curative care is
100% E ca c, 80% 0
·~ VJ 40% ] ·g. 20% 0
not an either/or proposition. Patients can move in and out of palliative care as treatment needs change, or as a respite from aggressive medi- cal treatment and/or high medical expenses (Figure 12-1).
Palliative care is not the same as hospice care, which is limited to terminally ill patients (see the next section).
The Center to Advance Palliative Care, based in New York, pro- vides information to help patients and their families receive care that addresses all of the patient’s needs. (Visit the center’s Web site at www.capc.org for information about goals and services.)
Terminally ill patients are often referred to facilities or agencies that pro- vide hospice care. A hospice in medieval times was a way station for travelers. The first modem hospice facilities were established in England in the 1960s as places where patients could go to die in comfort.
In the United States, hospice care may be provided in facilities built especially for that purpose, in hospitals and nursing homes, or at home. (Angela, in the chapter ‘s opening scenario, practices in a hos- pital. The floor she supervises is designated a hospice.) Hospice care focuses on relieving pain, controlling symptoms, and meeting emo- tional needs and personal values of the terminally ill, instead of tar- geting the underlying disease process. The hospice philosophy also recognizes that family members and other caregivers deserve care and support, continuing after the death of the patient. Hospice pro- grams ease dying; they do not support active euthanasia (a Greek term meaning “good death”) or assisted suicide.
Bereavement services are also available through hospice care to help patients discuss such issues as preparing a will and planning a funeral, and to help surviving family members cope with grief and loss after the patient dies. Hospice programs generally provide bereavement services through discussion groups, follow-up visits from hospice personnel, and sometimes referrals to appropriate mental health professionals.
Most in-home hospice programs are independently run in a fashion similar to visiting nurse or home health care agencies. Patients receive coordinated care at home by multidisciplinary teams composed of phy- sicians, nurses, social workers, home health aides, pharmacists, physical
U.S. NE MW w s U.S. and regions
hospice A facility or program (often carried out in a patient’s home) in which teams of health care practitioners and volunteers provide a continuing environment that focuses on the physical , emotional , and psychological needs of the dying pat ient.
Chapter 12 \ Death and Dying 327
therapists, clergy, volunteers, and family members. Hospice teams meet regularly to work on patients’ needs concerning pain and other serious symptoms, depression, family problems, inadequate housing, financial problems, or lack of transportation. The team then expands, amends, or otherwise revises each patient’s care plan, as necessary. ·
For patients to be eligible for hospice care, physicians usually must certify that they are not expected to live beyond six months. Hospice care is generally reimbursed by Medicare, Medicaid, and many pri- vate insurance companies and managed care programs.
[ [!j.tjJfl.]I!IQt.f.!lifa 6. Distinguish between palliative care and curative care.
7. Define hospice.
Indicate with a “C” or a “P” whether each of the following actions constitutes a form of curative care or palliative care.
8. Allowing a patient who is terminally ill with lung and stomach cancer to self-administer morphine patches as needed for pain relief.
9. Administering radiation treatments after breast cancer surgery.
I 0. Surgical severing of certain nerves to relieve suffering for a patient terminally ill with cancer of the spine.
I I. Counseling a terminally ill patient and his or her family concerning funeral arrangements and other end-of-life decisions.
12. Administering antibiotics to cure an infected tooth.
13. Cosmetic surgery for a teenaged patient whose face was burned in a fire .
terminally ill Referring to patients who are expected to die withi n six months.
EDUCATING HEALTH CARE PRACTITIONERS ABOUT END-OF -LIFE ISSUES
While modern medicine has effectively delayed the moment of death, in many cases it has dealt less conscientiously with compassionate, comfort care for terminally ill patients: those who are not expected to live beyond six months, usually because of a chronic illness that has progressed beyond effective treatment or for which there is no cure.
Studies published within the last decade have shown the need for educating health care practitioners in end-of-life care:
• A 2003 Hastings Center Report found that” … too many Americans die unnecessarily bad deaths-deaths with inadequate palliative support, inadequate compassion, and inadequate human presence and witness. Deaths preceded by a dying marked by fear, anxiety, loneliness, and isolation. Deaths that efface dignity and deny indi- vidual self-control and choice.”
• In 2004, the American Medical Students Association (AMSA) formed a death and dying interest group, in response to medical
328 Part Three I Professional. Transitional, and Societal Health Care Issues
students’ consensus that medical school leaves students inade- quately prepared to communicate with terminally ill patients, as well as poorly equipped emotionally to deal with matters of death and dying. The AMSA interest group continues to provide guid- ance, support, and resources for students who wish to supplement their medical education in the area of death and dying.
• A 2010 study of 12 Washington State hospitals found that pro- grams aimed at improving health care practitioners’ ability to communicate with patients and families in reus did not improve end-of-life care, according to results published online in the American Journal of Respiratory and Critical Care Medicine. For example, wrote J. Randall Curtis, MD, one of the study’s authors, “Many patients [in the intensive care unit] die with moderate or severe pain and physicians are often unaware of patients’ prefer- ences regarding end-of-life care.” In addition, the study found, “Family of ICU patients have a high prevalence of symptoms of anxiety, depression, and post-traumatic stress disorder . .. and report physician and nurse behaviors that increase their burden.” Study conclusions supported improving education among doc- tors, patients, family members, nurses, and social workers to improve end-of-life care and patient/family satisfaction. “This is an area of care that is especially important in our current time,” Curtis added.
• A 2010 British study that surveyed 8,500 physicians found that their religious beliefs often affected the quality of end-of-life care administered. The more religious the physician, the more likely he or she is to avoid discussions with very ill patients about com- fort care only. Physicians who describe themselves as agnostics or atheists were more open to patient requests for less aggressive end-of-life care.
• In 2013, the Association of American Medical Colleges (AAMC) reported that only five of the nation’s 125 medical schools offered separate courses on death and dying. Instead, most incorporated medical humanities, ethics, and/or communication into an exist- ing required course.
Source: Jennings B., T. Rundes, C. D’Onofrio, et al. “Access to Hospice Care: Expanding Boundaries, Overcoming Barriers. The Hastings Center Report.” 2003; 33 (2): S3-4.
Fortunately, the need to teach end-of-life care to physicians and other health care practitioners has been recognized. Increasingly, schools that train health care providers are offering courses in thanatology- the study of death and of the psychological methods of coping with death. For instance, the American Board of Internal Medicine (ABIM) requires that internists seeking certification have training in caring for the dying during residency. The University of Illinois Chicago College of Medicine teaches pediatric residents how to communicate with griev- ing parents. New York Medical College in Valhalla offers a 2-month course in empathy for first year students. George Washington Univer- sity medical school teaches students how to deliver bad news to patients and how to talk to patients about advance directives and other end-of-life concerns.
thanatology The st udy of death and of the psychological methods of coping with it.
Chapter 12 I Death and Dying 32 9
LO 12.4 Discuss benefits to end-of-life health care derived from the right to die movement.
In addition, many organizations exist that list their primary mis- sion as advocacy for improved care for the dying and educating health professionals and the public about end-of-life issues. A sampling of such groups includes Compassion and Choices (www.compassion andchoices.org), Dying Well (www.dyingwell.org), Growth House (www.growthhouse.org), Medicaring.org (http://medicaring.org/), National Hospice and Palliative Care Organization (www.nhpco.org/ resources/end-life-care-resources), and The Rand Center to Improve Care of the Dying (www.rand.org; a Rand report on improving care of the dying can be found at www.medicaring.org/files/qiconsult packagev41.pd£). An Internet search for “death and dying” will pro- vide URLs for many more organizations. Many of these organizations provide living will and medical power of attorney forms, and all pro- vide useful information to the public. Some routinely file amicus curiae (friend of the court) briefs in legal cases addressing end-of-life issues. Others are engaged in research, public advocacy and education activi- ties to improve the care of the dying and their families.
Despite a conscious effort to improve training and attitudes regard- ing dying patients, end-of-life care remains one of the most emotional issues for health care practitioners.
The Right to Die Movement Americans have long been concerned that advancing medical tech- nology may allow health care practitioners to delay death beyond the point where any quality of life can be maintained or a cure real- ized, thus depriving individuals of the right to die as they wish. This concern led to the first living wilt created and made available to the public by attorney Luis Kutner, who founded the Euthanasia Society. Kutner’s goal was to help dying people exercise their rights to control end-of-life medical care.
The right to die first became a matter for the courts to deliberate in 1976, with the death of Karen Ann Quinlan.
The Quinlan case raised important questions in bioethics, euthanasia, and the legal rights of guardians. The case resulted in the development of formal ethics committees in hospitals, long-term care facilities, and hospices. It also called attention to the need for advance health directive~.
Another landmark case in the right to die movement involved Nancy Cruzan, a 26-year-old woman who was severely injured in a car crash.
While the previous landmark legal cases furthered certain right to die arguments, other events in the nation’s history have also furthered the cause. Here is a timeline:
• 1946-Committee of 1776 Physicians for Legalizing Voluntary Euthanasia is formed in New York State.
• 1967-Attorney Luis Kutner and members of the Euthanasia Soci- ety (later called Choice in Dying and then Partnership for Carin both organizations now defunct) devise the original living will.
• 1973-American Hospital Association creates the Patient’s Bill o · Rights. (To date, attempts to pass a federal Patient’s Bill of Righ have consistently failed.)
• 1976-California’s Natural Death Act the nation’s first right to die statute, is signed into law.
330 Part Three I Professional , Transitional , and Societal Health Care Issues
LANDMARK COURT CASE Right to Die Precedent
In 1976, the parents of Karen Ann Quinlan, then 22,
obtained permission from a New Jersey court to remove
their daughter from a respirator. Karen Ann had been in a
persistent vegetative state for several months, after allegedly
ingesting an unknown combination of alcohol and drugs.
Karen Ann’s father, as her legal guardian, had asked her phy-
sicians to remove the respirator believed to be sustaining
her life. The physicians refused, and the Quinlans sued for
their daughter’s right to die. A lower court held for the phy-
sicians, but on appeal, judges allowed Karen Ann’s respirator
to be disconnected. She continued to live via a feeding
tube, but died in June 1985 of pneumonia, at the age of 31 .
In re Quinlan, 70 N.J. 10, 49 , 355 A.2d 647, 668 ( 1976).
LANDMARK COURT CASE Legal Struggle to Remove Feeding Tube
On January I I, 1983, Nancy Beth Cruzan was driving alone
when she lost control of her older model car that had no
seat belts. Nancy was thrown from the car and landed face
down in a water-filled ditch . When emergency medical
technicians arrived , Nancy had no vital signs, but the EMTs
resuscitated her. After about two weeks Nancy had not
awakened and her condition was diagnosed as persistent
vegetative state, following irreversible brain damage. Phy-
sicians inserted a feeding tube for Nancy’s long-term care.
After 4 years with no improvement, Nancy’s par-
ents asked to have the feeding tube removed. The hos-
pital demanded a court order, and a 3-year legal battle
ensued. The trial court ruled that the feeding tube could
be removed, based on testimony given by one of Nancy’s
friends that she would not want to live on artificial life sup-
port. The Missouri State Supreme Court reversed the trial
court’s ruling, holding that the lower court did not meet the
clear and convincing evidence standard. The case reached the U.S. Supreme Court, where justices affirmed the Missouri
State Supreme Court ruling and recognized that the right to
refu se medical treatment is guaranteed by the U.S. Consti-
tution. The case was sent back to the trial court, for the
purpose of gathering clear and convincing evidence that
Nancy Cruzan wou ld not have wa