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Judson, K., & Harrison, C. (20 16). Law and ethics f or the health professions. (7th ed.). New York: McGraw- Hill.
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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