bioethics for the health professions

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Lewis, M. A., & Tamparo, C. D. (20 12). Medica/law, ethics, and bioethics for the health professions. Philadelphia: F. A. Davis.



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End of Life Issues

((Life is not measured by the number of breaths we

take) but by the moments that take our breath

” away. – Author unknown

advance directive A state’s response to the living will ; sometimes called the Natural Death Act; often includes all documents related to end-of-life choices.

code red Medical phrase used to indicate life-or-death emergency. durable power of attorney An appointed proxy or substitute who makes decisions related to property

and finances. durable power of attorney for health care Sometimes called medical proxy; the legal right to act on

another’s behalf in making health-care decisions. euthanasia From the Greek term meaning “good death ,” willfully allowing death , to keep a person

with incurable disease from suffering; more commonly used today to express actively taking one ‘s life.

hospice A lodging, association, or service for those who are terminally ill. living will Legal document, vo luntarily made by an adult, stating what treatment and procedures that

person wants done in the event of a terminal illness, es pecially helpful if the person becomes comatose or incompetent.

Patient Self-Determination Act Federal law requiring institutions giving medical care to inform clients of their option to use such advance directives as living wills and durable powers of attorney for health care.

LEARNING OUTCOMES Upon successful completion of this chapter, you will be able to: 16.1 Define key terms. 16.2 Describe the living will, advance directive, and durable power of attorney for health care. 16.3 Appraise components of the Patient Self-Determination Act. 16.4 Restate choices an individual might have in death. 16.5 Describe the importance of medications for dying clients. 16.6 Discuss at least three ethical implications of life-and-death decisions. 16.7 IdentifY and explain at least fi ve psychological aspects affecting dying clients . 16.8 Differentiate among various legal definitions of death. 16.9 Describe two famous court cases and their impact on prolonging life. 16.10 Express possible legal implications of life-and-death decisions. 16.11 IdentifY and explain at least fi ve physiological aspects affecting dying clients .




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16.12 16.13 16.14 16.1 s 16.16 16.17

Discuss the stages of dying as defined by Kubler-Ross. Describe the services of hospice for dying clients. Differentiate between active euthanasia and physician-assisted death. Discuss the Uniform Anatomical Gift Act. Describe an autopsy and who may authorize one. Define the role of the health professional in dealing with clients and families in life-and- death decisions.

COMPETENCIES CAAHEP • Identify the effect personal ethics may have on professional performance. (CAAHEP X.C.S) • Explain how the following impact the medical assistant’s practice and give examples:

Uniform Anatomical Gift Act (CAAHEP IX.C.1 O.e) Living will /advance directive (CAAHEP IX.C.1 O.f) Medical durable powerofattorney(CAAHEP IX.C.10 .g)

• Develop a plan for separation of personal and professional ethics. (CAAHEP X.P.2) • Examine the impact personal ethics and morals may have on the individ ual ‘s practice.


ABHES • Use empathy when treating terminally ill patients. (ABHES S.c) • Identify common stages that terminally ill patients go through and list organizations and support

groups that can assist patients and family members of patients struggling with terminal illness. (ABHES S.d)

• Advocate on behalf offamily and patients, having ability to deal and communicate with family. (AB HES S.e)

What Happened to My Plan? Ted is 76 years old. He is retired and lives with his wife of 44 years and their adult daughter. As a laborer, he spent most of his working years with heavy equipment and cranes on land, tug boats, and ships. From his home, he sees the Puget Sound and watches the passing ships. Ted has been diagnosed with emphysema and suspected asbestosis. More than 7 years after diagnosis, his breathing is now difficult. His sense of humor, his love offamily, his care for others, and his knowledge of the passing ships is as keen as ever.

Ted and his internist are friends. They worship in the same church. When Ted sees his doctor, they tell jokes and swap stories before getting down to the serious business of his illness. Ted refuses using oxygen until he can no longer sleep peacefully. Ted and his wife, Ann, discuss a living will; they talk with their children, and meet with their attorney to update their wills and have the Washington State advance directive executed. Ted shares it with his physician, and they agree on his care management.

On a cold and gloomy December day there is rain and even some snow in the Pacific Northwest. Ted is housebound most of the time now. The weather makes his breathing more labored. He is having severe headaches. When Ann suggests Ted visit his doctor, Ted grumbles that there is nothing more the doctor can do. One evening, Ted is unable to wear even his slippers because his feet and legs are so swollen. The water retention makes his feet feel like water pads. In his humor he comments, “I feel like Jesus-walking on water.”

Early the next morning, Ted cannot breathe. He is suffocating. Ann dials 911. In minutes emergency medical technicians are at the door. In their quick assessment, they comment on



Chapter 16 End of Life Issues 227

the strength ofTed’s heart but the weakness of his lungs. Ann explains the emphysema and suspected asbestosis. Ted is transported to the hospital, treated in the emergency room, and moved to intensive care. Ann, their daughter, and their son are at his bedside. Although breathing is stabilized, the medical staff inquires about the use of a respirator and his living will. The family responds positively, and the advance directive is supplied to the hospital that afternoon.

Circumstances in the next few days greatly alter Ted’s life. Ted’s physician suffers his own tragedy and is called to Denmark for a family death. When attempts to remove Ted’s excess fluid are not totally successful, a nephrologist is called who orders the placement of a shunt in Ted’s shoulder for dialysis. Neither Ted nor the family is anxious to begin dialysis. Ted had watched a close and dear friend suffer greatly, lose a limb, and eventually die after years of dialysis. Ted believes that dialysis will make a “good death” next to impossible. The nephrologist insists and discusses options with the family. ‘This is just a ‘jump start’ to get your kidneys going; we will probably only have to dialyze you twice.” Ted and Ann discuss dialysis. There is hesitation, but the decision is finally made to go ahead, and the consent for dialysis is signed. Both Ted and Ann are concerned about all the side effects. A chaplain who visits explains why the form has to list all the possible side effects, even though few if any are likely to occur. Dialysis will begin the next morning.

The family goes home for a night’s rest before their return to the hospital early the next morning. The weather, however, intervenes; heavy snow falls during the night. The hills of Seattle are clogged with vehicles going nowhere. Freeways are treacherous. Even the streets to the hospital are impassable. Dialysis technicians and portable dialysis machines are delayed. Their load backs up, and patients more critical than Ted wait long past their dialysis time fo r treatment. Ted’s condition worsens. Fortunately, the weather moderates, and the schedule moves forward for Ted’s dialysis to begin. It helps little, however. After two treatments, Ted begins to bleed internally, and his laboratory tests indicate that an emergency exists. A surgeon is called in-another stranger to the family, but the “freshest” one available. It seems every surgeon and every hospital is overburdened this Christmas holiday. Emergency surgery is scheduled for 5:00p.m. The family is at the bedside, but the operating room is full; a code red in the room Ted is to use delays surgery further. Ted’s condition is so critical that the surgeon checks nearby hospitals for an operating room. None is available. Finally at 1 a.m., Ted goes into surgery. The family is told that there is only a fifty-fifty chance he will survive.

Ted survives 4 hours of surgery but is returned to the intensive care unit (ICU) on a respirator. There was a bowel perforation, and half his colon was removed. He is critical, but amazingly is able to be weaned from his respirator in 24 hours. By now Ted is receiving food and hydration, blood, platelets, antibiotics, and pain medication intravenously. He cannot speak but is somewhat alert. He is seriously weakened. Urine output decreases, and the question of dialysis returns. At this point, all persons involved in Ted’s care meet to discuss treatment; they meet with the family. Each family member is interviewed sepa- rately about their wishes and Ted’s wishes regarding extraordinary means. Earlier an ICU nurse told the family that if even one of them has any hesitation about treatment, the hospital will not follow Ted’s wishes. After completion of the interviews, it is clear that the family intends to follow Ted’s wishes. Dialysis will cease. It is only a matter of time now. The nephrologist, however, has other ideas. When she discovers dialysis has been discon- tinued, she demands to know why. When the family explains, she says, “I was not present for that consultation. I will have to hear it from Ted himself.” She goes to Ted’s bedside, asks him if he can understand her, and says, “Ted, do you want dialysis?” Ted, in his hospital bed with head and shoulders elevated 10 to 20 degrees, has his arms immobilized at his side for the drip of numerous intravenous (N) lines. An oxygen mask covers his nose and mouth. His eyes show lack of rest and sleep, fear about what is happening to




228 Unit IV Bioethical Issue

him, and concern for his family. Ted shrugs his shoulders and opens his hands palms upward in gesture. The nephrologist is ordering a chest x-ray and dialysis when the family intervenes. An on-call physician and the nephrologist argue outside Ted’s room, in earshot of the family. The attending physician indicates that in Ted’s condition, dialysis probably will do more harm than good. His body cannot withstand dialysis. The nephrologist disagrees.

When there seems no hope and the family is feeling powerless, their family physician returns and intervenes on behalf of the family. The damage has already been done, however. Ted has suffered not just one but all of the possible side effects the family feared. Ted is now bleeding internally from almost every organ of his body. All IV lines are removed except what is needed to keep Ted comfortable. Every breath is the hardest work his body has ever known. Each member of his family says good-bye and tells Ted how much he is loved. Nurses and doctors, so attentive in the previous 25 days, also stop by. The ICU nurses continue to do what they are best known for-attending to the needs of the critically ill. The primary care physician remains close. The end is peaceful. The end is relief-relief from agony and pain, relief from any more difficult decisions, relief from the disappointment that a loved one’s wishes were so hard to carry out.


ETHICS CHECI< Throughout the text, many discussions of rights have surfaced both in the legal and the bioethical context. The dialogue continues in this chapter, taking a closer look at the right

to die with dignity. Choices are continually made about the quality of one’s life. How is it decided what health care

is received? Is there discrimination in elder care? How can vulnerable populations be protected? People living in dire poverty struggle daily with life issues. An elderly person alone with no trans- portation and no nearby relatives fears the loss of personal control and independence. Some live with the challenge of decreased mental and emotional capabilities. There are those who respond to life’s challenges with grace, strength, and a happy disposition no matter what life gives them. Others may only be able to face life’s challenges with awkwardness, difficulties, and depression. All health-care professionals are to be reminded of the vulnerabilities and circumstances of their clients. Understanding and accepting clients and their wishes while providing quality and person- alized health care is the challenge, even more specifically when facing death.

Adults have the right to make choices to forego life-sustaining treatments when death is imminent. Life-prolonging technology, however, has pushed death further into the future, and health professionals are often unable to help clients deal with the emotional strain and diminished capacity that often follow. Incompetent adults also need a voice in their choices in dying. These circumstances create an environment for action from the legal community. e


When health-care professionals found themselves in legal and ethical dilemmas related to end- of-life issues, states began to pass legislation giving clients the specific legal right to forego life-sustaining treatments, nutrition, and hydration. The legislation also provided protection to providers and hospitals carrying out such orders. These directives allow individuals or their appointed agents to make decisions regarding their dying.



Chapter 16 End of Life Issues

A California and Washington were forerunners in end-of-life legislation. California’s document ~ was the living will; Washington’s response to the legal dilemma was the physicians’ directive,

or Natural Death Act. The intent of both documents was to provide an avenue through which individuals could make choices regarding their death before the event, usually while still healthy. A living will is an advance directive stating an individual’s wishes regarding whether to be kept alive through the use of artificial means, such as life support, feeding tubes, and artificial respiration. Advance directives can include the living will as well as powers of attorney and health- care proxies that may be known by other names-medical surrogate, health-care power of attorney, designation of health-care agent, and designation of conservator (guardianship). Each of these documents serves to provide direction and/or name someone to act on an individual’s behalf when that individual is unable to convey his or her wishes to others. Today, all SO states have end-of-life legislation (Fig. 16-1.) e

In some states, the living will and advance directive documents or appointments are combined into a single form, often called the advance directive. Each state identifies particular stipulations, but the intent is the same: to direct health-care professionals on decisions that are often made before death-if or when to resuscitate and what if any kind of heroic measures are to be performed. In recent years, each of these documents has grown increasingly specific. Individuals can relate if or under what circumstances artificial feeding or hydration is to begin and at what point only “comfort” measures are started. See Appendix II for examples of both a living will and an advance directive.

Another avenue for clients to express their wishes is becoming more popular. The Physician Orders for Life-Sustaining Treatment (POLST) is designed to improve the quality of care individuals receive at the end oflife. Not all SO states utilize the POLST form, but each state that participates has designed its own form. Sections are likely to include information about resuscitation instructions, advance directives, and orders for other life-sustaining orders. See state+programs.htm to see if your state participates and to view a sample form.

In addition, the federal government passed the Patient Self-Determination Act in 1991. This law applies to all health-care institutions receiving payments from Medicare and Medicaid, including hospitals, skilled nursing facilities, hospices, home care programs, and health maintenance organiza- tions. The act requires that all adult persons receiving medical care from such institutions be given written information about their right to accept or refuse medical or surgical treatment. These clients must also be given information about their right to formulate advance directives such as living wills and to designate someone to act on their behalf in making health-care decisions. The Patient Self- Determination Act, however, does not override any state law, allowing a health-care provider to object on the basis of conscience in the implementation of such an advance directive.


~ In addition to living wills or advance directives, many individuals choose to create the ~ durable power of attorney or the durable power of attorney for health care. The durable

power of attorney is a legal form that allows a designated person to act on another’s behalf, making decisions related to finances and property. Likewise, the durable power of attorney for health care or the medical proxy allows a designated person to make only health-care decisions for another. A person must be competent to sign a power of attorney. Some states require that signers must be able to manage their own property effectively at the time of signing. Signers keep control over the document as long as the person can manage independently. The signed document can be given to a lawyer or a close friend with instructions that it is turned over to the attorney-in-fact only if the need arises. Once signed, the document is in effect until it is revoked. e

This designated person should know and understand the client’s personal wishes to ensure that the person with power of attorney will act on the client’s behalf in all instances ofhealth care. This agent is



230 Unit IV Bioethicallssue

Figure 16-1. Three legal documents allowing clients to express their choices regarding their

health care. (A) Living will. (B) Advance directive.

(C) Durable power of attorney for hea lth care.



Chapter 16 End of Life Issues 231

often a spouse, partner, grown child, close friend, other relative, or someone in whom the person has full confidence. Each state has established rules governing the use of the durable power of attorney. Individuals are advised to periodically update and review their durable power of attorney for health care as well as an advance directive. Also, reviewing each state’s laws if moving from state to state is necesssary. Professional legal advice regarding a given state’s stipulations may be advisable, but preprinted forms are readily available. See Appendix II for an example of a durable power of attorney for health care.


Individuals can register their advance directive with a national registry that will electronically transmit a copy of their document to any health-care provider (hospital, doctor, skilled nursing facility, home health agency, provider ofhome health care, ambulatory surgery center, and hospice). The registry agrees not to release the personal information to any party other than health-care providers, so information is kept private and confidential. The registry provides labels to affix to an insurance card and driver’s license, stating that the individual’s advance directive is registered. The registrant is contacted annually by mail to confirm that the advance directive has not been changed or revoked and to update personal and emergency contact information. Health-care providers can contact the registry 24 hours a day to gain access to advance directives. See for more information.


No one escapes death. From the moment of birth, each day oflife moves a person closer to death. Some die suddenly and peacefully, perhaps during sleep. Some die suddenly as a result of an accident or as a victim of crime. Some die slowly and gradually, with bodies that deteriorate and organs that cease to function. Some die with little or no pain or discomfort. Others suffer a great deal. Most want to live, but when faced with death, desire to go quickly, painlessly, and with dignity. However, not all are so fortunate.

In dying, there are choices that can be made. Some face a life-threatening illness and take action to direct their wishes for the time when death is imminent. Others create advance directives when making their last will and testament. There are also a large group of individuals who refuse to think of death, make no plans of any kind, and may leave loved ones to make decisions with a great deal of anguish. Still others live in a culture where discussing or planning for death is forbidden or frowned upon.

Personal attitudes and public opinion have changed through the years regarding death. In 1938 the Euthanasia Society of America was founded. It was a national, nonprofit organization dedicated to fostering communication about complex end-of-life decisions among individuals. The organization invented the living will in 1967. The premise of the organization was to create an atmosphere in which one could take measures to end life, creating a “good death,” when threatened with a terminal condi- tion. Euthanasia was identified as passive (allowing death to come naturally, taking no measures to prevent it) or active (the intentional taking of one’s life). Now euthanasia is more commonly defined as the latter. Today there are numerous organizations dedicated to choices in dying, such as Compassion in Choices (; the National Hospice and Palliative Care Organization (; the World Federation ofRight to Die Societies (; and the Death With Dignity National Center (

While individuals increasingly seek control over their choices in dying, the almost coercive power of medical technology and medicine to preserve and prolong life may cause many to suffer debility, pain, and perhaps a lesser quality oflife. The desire to have choices in dying comes from fears and concerns related to prolonged dying as the result of technological interventions. Most desire the right to be able to refuse treatment or hospitalization. A few might choose assisted death. Generally, individuals do not want to be a burden to significant others. They fear losing their independence and control and want to choose their quality of both life and death.

Every day, medical personnel confront complex issues regarding the meanings oflife and death. There is a fine line between helping a person to live and allowing that p erson to die. When is it



232 Unit IV Bioethicallssue

appropriate to use extraordinary means to prolong life? What are extraordinary means? What are the legal implications if treatment is withheld or withdrawn? Technological or mechanical intervention has saved the lives of many. Medical technology offers insulin to control diabetes, a cardiac pacemaker or mechanical heart valves for a weak or diseased heart, renal dialysis for kidney failure, angioplasty for clogged arteries, even antibiotics for pneumonia.

Consider the following example from Donald M. Hayes writing in Between Doctor and Patient: “Mr. Baker had terminal kidney failure and was comatose. Several tubes came from various places in his body. He was receiving both blood and glucose into his veins. One night he went into cardiac arrest. A team of nurses and physicians responded to a code red and worked vigorously to resuscitate. The attempt was futile, and Mr. Baker died. The memory of Mr. Baker’s death was lasting to Mr. Rogers, the recently admitted patient in the same room. He said to his physician, ‘Please don’t ever let that happen to me. I’ve tried all my life to live like a man; I want to die like one.’ Mr. Rogers underwent surgery that revealed inoperable, widespread cancer. He did not respond well, and a few days later he had a tube in his stomach, a catheter in his bladder, a tube through his nose, and intravenous tubes in both arms. When he suffered respiratory failure, a tracheotomy was performed to save his life. He was given a slate to write on, since a tracheotomy precludes speech. Later one evening, before he managed to switch off this respirator so that he might die peacefully, he wrote on the slate, ‘Doctor, remember; the enemy is not death. The enemy is inhumanity.”‘

Few turn their backs on the medical technology that has added years of life for so many. Such advances in medicine are heralded by the public and the media; however, if not used judiciously, technology can supplant the quality oflife. At some time, every individual is apt to face the issue of how much medical technology to use to prolong life, and hopes, at the same time, for a “good death.” Whether or not to prolong life can be a serious problem when the decision is made with little fore- thought or adequate planning. When the cardiologist tells a loved one that a pacemaker is necessary to regulate the heartbeat, the general response is, “When can it be done?”

The decision is more complex, however, when a loved one is hospitalized with a heart condition that is rapidly deteriorating and little can be done. The questions of how much intervention to use and when to intervene are much more serious. When the heart monitor indicates with a buzzing sound and a continuous monotone sound that the heart has ceased to beat, somewhere, someone is going to ask, “Do we resuscitate?” It is at this point that the decisions declared in a living will or advance directive become significant.


It is the fear of suffering more than the actual death that concerns the majority of individuals. Suffering can be short or long term. Short-term suffering presents a set of problems different from those of long-term suffering. Consider the following:

Case Studies Example 1: A 45-year-old teacher learned in June that acute myelogenous leukemia accompanied by blastic transformation was destroying her body. The prognosis was poor. Hospitalization and chemotherapy followed, with severe side effects and pain. She died 2 months later when remission attempts failed. Example 2: A 50-year-old electrician was diagnosed with colorectal cancer. Surgery followed, and a permanent colostomy was established. Postoperatively, the client did fairly well andre- turned to work part-time during chemotherapy. Within a year, cancer metastasized, and compli- cations resulted. Consultation with specialists recommended only symptomatic treatment. Massive doses of analgesics were required to keep him comfortable for the remaining 6 months. The electrician remained home until about 6 weeks before death, when hospice was called.



Chapter 16 End of Life Issues

Consider the variables of time, cost, and dependency in the two examples. Who suffered the most? Where are the greatest costs? Who is most dependent?

The amount of suffering often influences care decisions. Are antibiotics prescribed when a hos- pitalized person suffering from the last stages of pancreatic cancer contracts pneumonia? Under what circumstances are “do not resuscitate” orders placed in clients’ charts? Consider an individual being kept alive by a respirator who has no recognition and no awareness of surroundings. Is the person suffering? Is life being prolonged beyond its natural course of events?

How much pain medication is prescribed to ease the suffering? When sufficient pain medication is prescribed to keep those close to death comfortable, health professionals know the medication provided for pain relief may depress breathing in some clients already so fragile and debilitated that death is hastened. Is this action seen as an act of euthanasia?


Medications are used to ease suffering and pain, but are also given for many other reasons, including sedatives for sleep and specific medications for the particular disease condition. Antidepressants and tranquilizers also may be prescribed. Medications are to be respected for their intended action and the client’s needs. The greatest difficulty arises with pain medications, especially in long-term suffering.

Problems arise when family members, friends, and even health professionals circumvent or ques- tion medication orders. This is often disastrous for the client; therefore, it is helpful for all persons close to the client to understand the medication orders. Unless everyone understands that the med- ication amount is needed to keep the level of pain bearable, the medication amount is often withheld or reduced. Medications may be given in different dosages, frequencies, and combinations for each individual. Age, weight, illness (whether chronic or acute), and the client’s threshold for pain all influence a medication choice.

Sometimes health professionals are reluctant to prescribe or administer the known safe dosage of pain medications. In fact, in some cases health professionals will administer less than the pre- scribed dose because they believe what was prescribed was too much. Some fear the client will become addicted and tend to view opioid orders or prescriptions from a criminal aspect rather than as treatment. The client or family members may push to use less medication than the amount pre- scribed because of the belief it is too harmful. Clients often wait too long to ask for pain medication, thinking they “can handle it.” All these circumstances have the potential of working against the clients’ comfort.


Dying clients differ in their psychological experiences. Although basic personalities remain the same, changes occur. A person normally calm and loving may have periods of violence and hostility. A happy person may become severely depressed. An individual who usually is able to accept medical facts may totally deny a life-threatening illness. In fact, a person who is nearly comatose or close to death may be unaware of his or her responses to questions or be unable to make any decisions.

Relationships change. The dying person may reject any close contact or relationships. Some individuals are incapable of continuing a close relationship with a person who is dying. Closest friends may become aloof and distant. Some may fear touching or caressing the dying person. The opposite may also be true. A stronger bond of friendship can develop, and new friendships will be made, possibly from individuals in similar circumstances. Broken relationships may be healed.

Relationships are important because they provide strength and support that may not be available through any other source. The depth of relationships during this time and the degree of acceptance by dying clients may depend on their self-image. When a person is ill, is in pain, lives in a deteriorating body, and possibly is unable to perform the activities of daily living, self-image is fragile. When self- image is lacking, hope is lost; dying clients feel useless, think they are burdens, and have difficulties



234 Unit IV Bioethicallssue

accepting help. The psychological effect of a poor self-image may even hasten death. Those who are dying worry that they are not fulfilling their usual role in the family and worry about their lack of control.

Personal goals are altered, dropped, or identified. There may be the goal to see a son or daughter graduate or a grandchild born; however, some goals will seem unrealistic to the dying because of limited time. The dying person either gives up or strives to live until a certain event takes place. The total loss of personal goals, no matter how insignificant they may appear, can be devastating to everyone. Indecision is often a psychological dilemma that accompanies lack of personal goals. Individuals close to the dying may be able to recommend goals and provide offers of help in the decision-making process.

Communication may become difficult. Aside from any physiological problems precluding speech or communication, what dying clients are unable to understand or hear may depend on what they choose to hear or are ready to understand. Communication may be complicated further if the client’s condition has not been honestly addressed. Of course, the opposite may be true. Some dying clients express the ability to communicate with greater depth because of the urgency of their circumstances.

There is often the question of whether dying clients should be told of their terminal condition. How much information should they be given? Some believe that all clients need to be told the med- ical facts and treated openly and honestly by all health professionals. They believe informed clients are better able to face death and are less afraid of the truth. Others believe no clients should be told they are dying, or that only those clients who give some verbal or nonverbal indication that they want to know should be told.

In some cultures, only family members rather than the client are told of impending death. Once told some clients may refuse to set goals, give up hope, and wait impatiently for death. Fear is often a trau- matic psychological aspect of dying. There is fear of pain, fear oflong suffering, fear oflosing independ- ence, fear of financial ruin, and fear of death itself The client’s fears are to be recognized and alleviated, if possible. To recognize these fears requires active and passive listening on the part of all people close to the dying individual and a willingness on the part of this individual to express those fears.

Much fear can be lessened if people close to the dying anticipate the fear and provide possible solu- tions and appropriate resources. Outside help may be sought, if necessary. Social workers, public health nurses, home health aides, clergy, and other health professionals can be valuable resources. Clients’ fear should be taken seriously, and reference to their supposed unimportance should be avoided.

The psychological aspects of death are difficult for everyone because they generally are less understood than the physiological aspects of death, but to care for the physical and ignore the psychological is to treat only half the client. As Norman Cousins said, “Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.”


Medicine has numerous treatments for som e of the physiological problems of suffering and pain experienced in the dying process. Sometimes the treatments are sufficient; at other times, they barely address the problem. Untreated or undiagnosed physiological problems can cause or enhance psy- chological difficulties. Separating the psychological from the physiological is difficult. For example, pain and suffering, if untreated by therapy or medicinal means, may prove to be a psychological bar- rier for clients, their families, and health professionals.

Loss of communication skills as seen in the aphasic or the comatose client may be frustrating and unbearable. If clients are indecisive or suffer from dementia because of physiological changes, they may not be able to participate in the decision-making process of their life-threatening illness. Family members then may need to assume greater roles in talking for clients and making decisions.

Other common physiological problems encountered include loss of bodily functions; inability to move or ambulate; inability to eat or drink; and inability to tolerate medications, treatments, light, or sound. In some settings, these symptoms may be treated without much difficulty. However, if clients choose to die at home, professional help or training may become necessary. If clients



Chapter 16 End of Life Issues 235

become severely disabled physically, they may be reluctant to go anywhere, even to the ambulatory health-care setting. Family members may become exhausted caring for their loved ones and may be unable to administer some of their treatments. The more severe these physiological problems, the more difficult daily existence becomes.

Physiological difficulties may hinder sexual identity and involvement, altering sexual expression. The physiological and psychological aspects of sexuality are so intertwined that cause and effect are difficult to determine. It may be difficult or impossible to have sexual intercourse, so other ways to express love, caring, or the relief of sexual tension are sought. A discussion of the expression of sexuality and related client problems ought to be initiated by the health professional but rarely is.


The first hospice, lodging for the dying, was formed by Cecily Saunders in London in 1965. Hospice provides care for the terminally ill at home, in a hospital, in a skilled nursing facility, or in a special hospice facility. The main objective of care is to make clients comfortable, “at home,” and close to family. Treatments, such as cardiopulmonary resuscitation, intravenous therapy, nasogastric tubes, and antibiotics, are discouraged. Treatments are given in light of the client’s personal and social circumstances.

Death is seen as “all right.” A balance is kept between human needs and medical needs. Children are encouraged in the hospice as a reminder that life is an ongoing process. Clients might share a cup of tea with staff and each other rather than receiving an intravenous solution during their last hours.

An advantage hospice offers is that death is managed with dignity, and experienced staff members want to care for the dying. The expense is generally less than acute care costs and may be covered by insurance. In a special hospice facility, the dying client is not isolated behind curtains but rather is surrounded by others. An empty bed remains empty for at least 24 hours to allow adjustment by everyone. In addition, survivors are helped to deal with the death. If the hospice care is at home, clients are in familiar surroundings, may have their favorite foods, and are close to loved ones.


Elisabeth Ki.ibler-Ross defines five stages of grief or responses to dying. There is no set period for any one stage, nor will every dying person go through every stage. Some believe that no real grief work begins until passing through all five stages. Some may stay in denial until death; others may manage denial and bargaining and stumble in depression. Still others may move back and forth from one stage to another. Some may move through some or all of the stages several times. There is no set or acceptable pattern. However, the stages do offer information on how to relate to clients and their families who will experience similar stages.

Elisabeth Ki.ibler-Ross defines five stages of dying and death: (1) denial, (2) anger, (3) bargaining, ( 4) depression, and (5) acceptance.


Clients deny their life-threatening or terminal illness or go through periods of disbelief. Clients commonly say, “This is not happening to me” or “I’ll go for another opinion.” Denial generally is a temporary defense and offers therapeutic meaning to clients. Health professionals should listen to clients during this stage. Trying to contradict clients or force them to believe what is happening to them will be to no avail. Encourage clients to talk about death. Listen, listen, and listen.


Clients suddenly realize “It is me. This is happening to me. Why me?” They may become “problem clients” and are envious and resentful. Anger may be dispersed in all directions, at people and toward the environment. Rage and temper tantrums can occur. Professionals and family members will want



236 Unit IV Bioethicallssue

to remember that the anger is truly not directed toward them and will want to be understanding no matter how angry the client becomes. Listening to clients is important, allowing them to vent their own feelings.


During this stage, clients try to make deals with their provider, God or a higher being, or family, usually for more time or for a period of comfort without pain. Clients tend to be more cooperative and congenial. Common responses include the following: “Please let me see my homeland again.” “Dear God, I’ll never … if you make me well.” Health professionals can listen to dying clients’ requests, bur are not to become a party to the bargain. Some bargaining is associated with guilt. Bargaining can give the client the hope and stamina to reach a desired goal. It is OK to mourn and cry. Allow for silences.


The dying client’s body is deteriorating, sometimes rapidly; financial burdens are likely increasing; pain is unbearable; and relationships are severed. All can lead to depression. The dying are losing everything and everyone they love. Dying may be a time of tears, and crying may allow relief. Profes- sionals who appear h appy, loud, and reassuring will not provide much help to depressed clients. Clients may need to express their sorrow to someone or merely have someone close. They may have little need for words at this stage. Simple tasks may be impossible. Helplessness is real.


The final but perhaps not last stage is when clients are accepting of their fate. They usually are tired, weak, and able to sleep. They are not necessarily happy, but rather at peace. Professionals will be aware that clients may prefer to be left alone and not bothered with world events or family problems. Family members usually require more help, understanding, and support than clients in this stage. Touching and the use of silence may prove helpful.

Case Study Relate the five stages identified to any death or grieving experience you have had. Did you pass through all the stages? What was/is most difficult for you?

Following a death or the experience ofloss, there will come a time when friends and neighbors stop calling, “closure” has occurred, and everything slowly gets back to normal. Some say this is when the real and the very difficult grief work begins. A common definition of grief work is summarized by the acronym TEAR.

T = To accept the reality of the loss E = Experience the pain of the loss A = Adjust to the environment of what was lost R = Reinvest in the new reality


A An early legal definition of death was the cessation of the heart and lung. The two were so ~ interrelated that the cessation of one leads to the cessation of the other, followed by the

cessation of all cognitive activity, all other brain functions, and all general responsiveness. The cessation of the heart and of breathing has been the simplest to identify and the easiest test of life, and it became the acceptable definition of death. Today, the majority of deaths in the United States are still determined by this traditional definition of death. e



Chapter 1 6 End of Life Issues

With medical technological advances, resuscitative devices, increased complexities oflife, and the increased demand for organ transplants, the heart- lung definition of death was found insufficient in some cases. Death is a continuum, and different parts of the body die at different times. As long as there is any heartbeat to pump oxygenated blood to tissues, cells thrive. Even when an irreparable brain injury does not support life and life support is removed, the heart continues to beat for a short time. However, when the blood it pumps is no longer oxygenated, tissues and cells die. Approxi- mately 3 to 4 minutes pass before there is irreparable brain death. Once the brain dies, all the other body organs die at various intervals.

~ Subsequently, the concept of brain death was presented by the Harvard Ad-Hoc Committee, ~ chaired by Henry Beecher. The criteria follow: An individual appears to be in deep coma.

The condition can be satisfactorily diagnosed by the following points: (1) unreceptivity and unresponsivity, (2) no movements or breathing, (3) no reflexes, and (4) a flat electroencephalogram. Each of these tests is to be repeated at least 24 hours later with no change. This definition of brain death does not cover cases such as Karen Ann Quinlan, who was in a persistent vegetative state, or people who are in comas but do not meet other accepted criteria. e

In 1983, President Ronald Reagan formed a commission to discuss the ethical implications of dying and death. The commission recommended that all U.S. jurisdictions accept the Uniform Determination of Death Act developed with the guidance of three organizations: the American Bar Association, the American Medical Association, and the National Conference of Commissioners on Uniform State Laws. The act “established that the irreversible cessation of all circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem” is the criterion of death.

Some believe that this higher brain death definition addresses all purposes. Whatever the state’s legal definition of death, the declaration of death will be made by medical standards as defined in the Uniform Determination of Death Act. This means that as technology changes and medicine ad- vances, laws will not necessarily change; rather, good medical practices will determine what counts as good evidence that the legal definition of death has occurred.


Most legal rulings on life and death center on “Who makes the decisions?” Prolonging life by artificial means usually poses few legal problems. Federal laws state that clients with failing kidneys have the right to funding and the use of kidney dialysis machines. Some means of prolonging life artificially, such as insulin administration, are so easy, inexpensive, and widely practiced that there is no contro- versy about their use. On the other hand, some procedures, such as dialysis, are so expensive that federal legislation was necessary to ensure that every citizen has the right to such treatments.

Choices in dying, however, are complex and controversial. Consider landmark case law in the following two circumstances. In seeking greater choice in the process of dying, the courts appear to be regulating in a more restrictive manner. The fear of litigation is the reason in some cases why health-care professionals and institutions are hesitant to abide by clients’ choices in dying.

Case Law Karen Ann Quinlan: The litigation over the case of Karen Ann Quinlan was widely publicized. Quinlan was a New Jersey woman who, at age 21, was taken to the hospital in a comatose state by friends after a birthday party. No one is sure exactly what happened to Karen on Tuesday, April14, 1975, but the world soon began to follow her life closely. Her case was a newsworthy first. Karen’s condition deteriorated. On July 31, her parents asked her physicians to take Karen off the respirator and signed a letter to that effect. The physicians disagreed with the decision on moral grounds and refused to take Karen off the respirator. Legal action ensued.




238 Unit IV Bioethicallssue

On September 12, the attorney for Joseph Quinlan, Karen’s father, filed a plea with the superior court on three constitutional grounds: (1) the right to privacy, (2) religious freedom, and (3) cruel and unusual punishment.

Judge Robert Muir ruled against Joseph Quinlan, who then appealed the decision to the New Jersey Supreme Court. The court’s decision was in Joseph Quinlan’s favor and set aside any criminal liability for removing the respirator. It further recommended that Karen’s physicians consult the hospital ethics committee to concur with their prognosis for Karen. Weeks later Karen was weaned from the machine. She lived until1986.

Theresa (Terri) Schiavo: Terri Schiavo suffered cardiac arrest in February 1990, probably due to an eating disorder that may have caused a serious electrolyte imbalance diagnosed when she was admitted to the hospital. She was without oxygen 5 to 7 minutes longer than medical experts believe is possible without irreversible brain damage. Her husband, Michael, insisted she be intubated, given a tracheotomy to breathe, and placed on a respirator. Without these actions, she would have died. Terri lived in a coma for 2 months and then was repeatedly diagnosed as in a persistent vegetative state. She was removed from the respirator and kept functioning with an artificial feeding and hydration tube. She could breathe and swallow her saliva, but could not drink or eat. What happened in the next 15 years is almost unimaginable.

Terri’s husband and her parents struggled for a few years, but conflict arose when Michael and her parents disagreed about removing the feeding tube so that Terri could die peacefully. Terri had no living will. Twice courts ordered the feeding tube to be removed, but Terri’s parents fought to have it reinserted. The Florida legislature passed a law known as “Terri’s Law” to give the governor the prerogative of reinserting the feeding tube and required a special guardian ad litem be appointed. Later, the Florida Supreme Court ruled Terri’s Law unconstitutional, and the U.S. Supreme Court refused to overturn that decision. Just a week before Terri’s death, the U.S. Congress passed legislation to move the case from Florida to the federal courts. The Florida Federal District Court, the 11th Circuit Court of Appeals, and the U.S. Supreme Court refused to review the findings of the lower courts.

By this time and through all the court battles, Michael and Terri’s parents were estranged and could no longer be civil toward each other. In testimony, Terri’s parents said that even ifTerri had a living will, they would have fought to have it voided. Michael became even more determined to carry out the wishes he believed Terri would have had. In the last few days ofTerri’s life, private citizens, religious leaders, and news media lined up on both sides of the issue outside the hospital to witness a most public death. Michael’s wishes finally prevailed, and Terri died March 31, 2005, 14 days after the feeding tube was removed and 15 years after her cardiac arrest.

Both cases provoked discussions about end-of-life issues and medicine’s limitations. Both Quinlan and Schiavo were alive when their cases were brought before the courts. The question in both cases was whether each woman should be kept alive, one by use of a respirator, the other by artificial hydration and nutrition. It was not whether they were legally dead. There are questions to be asked. Should the two women have been allowed to die earlier? Is vegetative existence better than death? What impact does medical technology have on these decisions? Who pays for the exorbinate fees incurred in these cases? Who should decide? Is it more difficult to remove hydration and nutrition than a respirator?


ETHICS CHECK Life-and-death choices are numerous. The many factors to consider include the following: Who makes the decision? What role do politicians and the courts play in making decisions?

What is the influence of economics? Do circumstances influence decisions? What is ordinary and extraordinary treatment? e



Chapter 16 End of Life Issues 239

The burden of such decisions is heavy. If a decision is required in an emergency life-and-death matter, those in closest proximity to the client will decide. In health-care facilities, the law may determine who decides. If there is any question, consideration is given to the wishes of the client, the wishes of the family, the recommendations of the provider, and perhaps the recommendations of a professional team of individuals (ethics committee) whose purpose it is to make a decision- not necessarily in that order.

The problem arises over whose right is paramount in a decision. At times it is obvious. If a client is unable to decide, others are involved. The family has an influence, but the cases of Karen Ann Quinlan and Theresa Schiavo demonstrated that the influence of family is not decisive. In the case ofTheresa Schiavo, the governor ofFlorida, the 11th Circuit Court of Appeals, the Florida Supreme Court, the President of the United States, Congress, and the U.S. Supreme Court were all involved,

The same often is true of a client’s wishes. Even if clients are able to express their wishes to physi- cians and health-care providers, circumstances may override them, as was so clearly demonstrated in the vignette at the beginning of the chapter.

Many circumstances influence decisions. Age is a factor. Resuscitation may be started on a 16-year- old and not on an 89-year-old. Cost is also a factor. Triple cardiac bypass surgery may be performed for someone of substantial means more readily than for the indigent derelict. Health is a factor. A pacemaker may be inserted for the elderly client whose general health is good, but it may not be used if the client’s health is poor and other severe physical difficulties exist. The availability of resources is a factor. With only one kidney and four needy persons, three will have to do without.

Other factors include region, personal philosophy of life, the amount of pain one can endure, whether a client is comatose, and what the client’s feelings are about a good life versus a good death. Yet, all these factors are relative. Some are old at age 55; others are young at 90. Some can endure great pain, and others have a low threshold for pain. What is poor health to one person may seem to be good health to another. The relativity of the factors complicates the decision and mandates that each decision be considered individually on its own merits.


Cultures view life and death differently. For example, people of]ewish heritage strive to appreciate each day and live it as though it is their last. Death is seen as a part of the life cycle. Mexicans also view death as a natural part oflife and the will of God. In the Filipino culture, planning one’s death is taboo; hence, discussing advance directives and living wills is difficult. Many Chinese believe their spirits do not rest unless living descendants care for the grave and worship the memory of the dead. In the Japanese culture, family members want to be by the dying person’s bedside, and traditionally the eldest son has decision-making responsibility at this time. There is, however, a taboo against the discussion of serious illness and death. Cultural and religious differences exist in cases of organ and tissue donation. For example, many Hmong immigrants from Southeast Asia believe that organ donation prevents the person from experiencing reincarnation; for this reason, the Hmong also resist autopsies. Many Native Americans often oppose organ donation because of their enormous reverence for the body, which is considered both the residence and the manifestation of a person’s essence.

Health-care professionals will want to be sensitive to, understand, and appreciate cultural pref- erences. Being aware of a client’s cultural perspective and asking questions related to his or her wishes is better than assuming everyone thinks and believes alike.


Some people believe that assisted death weakens the moral fiber of the country and has far-reaching consequences. If death is justified for one individual to prevent further suffering, why not for infants with severe disabilities who have no possibility of a “normal” life? Consider the circumstances of an infant born with severe congenital defects and no possible chance of survival. The parents may



240 Unit IV Bioethicallssue

choose not to begin measures to preserve the infant’s life. This can mean watching a tiny infant gradually deteriorate over a period of days. The ordeal can be terrible. Parents may be some protected from this experience if the infant remains in the hospital, but the medical staff is not. Many physi- cians and health professionals ask, “Would it not be more merciful to inject the infant with a lethal dose of medication that would hasten death and prevent the suffering?”

Perhaps even more personal and difficult questions are raised related to death. “How do I want to die?” “What kind oflifesaving measures do I want?” “Might I choose assisted death?” “Can I stand to suffer?” “Do I have any control over my own death?” “What do I want health professionals to do for me?”

Questions arise about whether assisted death or euthanasia should be endorsed. It is considered assisted death when the physician provides a dying individual with a lethal dose of medication to be self-administered; it is considered active euthanasia when a physician administers a lethal dose to the client. In physician-assisted death, the client acts last, whereas in active euthanasia, the physician acts last.

~ Just as California and Washington were forerunners with their living wills and natural death ~ laws, they were forerunners in legislation to give people the option to seek “aid in dying

from physicians to end life in a dignified, painless, and humane manner.” These laws are much broader in their scope than any living will or advance directive. In 1994, Oregon passed the Death With Dignity measure that was later challenged by the courts. In 1997, the act was reaffirmed by the Oregon voters. Oregon became the nation’s first state to allow a physician to prescribe a lethal dose of medication when asked by a terminally ill client. The four safeguards in this measure are as follows: (1) The attending physician must truly convey informed consent, which must include all feasible opportunities, such as pain management, hospice, and palliative care. (2) The attending physician’s diagnosis and prognosis must be confirmed by a consulting physician. The latter physi- cian must verify that the client has made a voluntary and informed decision. (3) If either physician thinks the client might have depression that might impair judgment, a counseling session must be attended. (4) The client making the request must do so both orally and in writing. The law details specific time lines and a waiting period for the client before receiving the lethal medication. The request must be witnessed by at least two people who can verify the client’s capacity to make a decision and that the decision is voluntary. There were 59 individuals who exercised their right to end their lives under the Oregon Death With Dignity Act in 2009 according to the state’s department of health. That number appears to be average for each year since the Act became legal. e

In fall 2001 , U.S. Attorney General Ashcroft determined that the government would step in to revoke the licenses of any physician who prescribed controlled substances to clients seeking physician-assisted death in Oregon. By a 6-to-3 vote the U.S. Supreme Court ruled that Ashcroft exceeded his authority when he tried to block the Oregon law to help terminally ill clients die. The Supreme Court decision opened the door for other states to legalize physician-assisted death.

In 1997, the U.S. Senate passed a bill barring the federal government from financing physician- assisted death. The vote was 99 to 0. The same measure previously cleared the House of Represen- tatives by a vote of398 to 16. Medicare and Medicaid are prohibited from funding physician-assisted death. In June 1997, all nine Supreme Court justices refused to grant assisted death as a fundamental liberty for the terminally ill.

On November 4, 2008, the state of Washington passed Initiative 1000, the state’s Death With Dignity Act, which became law on March 5, 2009. This act allows terminally ill adults seeking to end their life to request lethal doses of medication from medical and osteopathic physicians. These individuals must be Washington residents who have less than 6 months to live. Details of the Washington Death with Dignity Act can be found

States with current legislation related to assisted death are California and Montana. In Cali- fornia, the Right to Know End-of-Life Options Act became law January 1, 2009 (AB 2747- Berg;



Chapter 16 End of Life Issues

Chapter 683 Statutes). The act is the first in the nation to provide those with a life-threatening illness full disclosure of, and counseling about, all legal treatment options, including the right to refuse unwanted treatment. Proponents of the bill believe it ensures that clients will receive the necessary information and power to influence the manner of death. It shifts client-physician communication on the subject from a physician-oriented decision to a cooperative one. A dury to share information enables clients to work with their physicians in determining the option that matches their values and desires. Montana’s Supreme Court ruled on January 31, 2009 that end-of-life decisions are a matter of personal liberty solely between client and physician. In both states, there was high opposition and the fear that the rulings opened the doors for assisted death legislation.

Legislation on physician-assisted death continues to be controversial, contradictory, confusing, and as emotional as legalization of abortion has been in the United States. In fact, many right- to-life organizations oppose assisted death legislation based on the principle that abortion and assisted death are the same as murder.


~ The legal definition of death identified earlier is particularly important in the area of organ ~ transplantation. All SO states have some form of the Uniform Anatomical Gift Act. Persons

18 years or older and of sound mind may make a gift of all or any part of their body to the following persons for the following purposes:

1. To any hospital, surgeon, or physician for medical or dental education, research, advancement of medical or dental science, therapy, or transplantation

2. To any accredited medical or dental school, college, or university for education, research, ad vancement of medical or dental science, or therapy

3. To any organ bank or storage facility for medical or dental education, research, advancement of medical or dental science, therapy, or transplantation

4. To any specified individual for therapy or transplantation needed by him or her

The gift may be made by a provision in a will or by signing, in the presence of two witnesses, a card. The card is generally carried with the person at all times. The card method may be the best because advance directives may not be readily available until it is too late for donation of organs or tissues. Donated organs include heart, lung, kidney, pancreas, liver, and intestine; tissue includes eyes, skin, bone, heart valves, veins, and tendons. There is no cost to the donors or their families. See Figure 16-2 for the steps followed in organ donation. e

Figure 16-2. Steps taken before organ donation.

1. Irreparable brain damage occurs; life support is to be suspended. Individual’s signed donor agreement is presented; family agrees.

2. Transplant surgical team is notified; ethics dictate that transplant surgeons not be present when life support is removed.

3. Life support is removed (usually a ventilator); heart continues to beat and pump deoxygenated blood to tissues and cells.

4. If heart continues to beat more than 1 hour, organs are unfit for transplant due to the lack of oxygen; transplant is called off; if the heart ceases to beat in less than an hour, transplant moves forward.

5. Transplant team must wait 120 seconds to make sure heart does not start to beat again; if it does, the team waits-back to step 4.

6. Once heart has stopped for the 2 minutes, death is announced; transplant team arrives to harvest donor organs for waiting recipients.



242 Unit IV Bioethicallssue

It is illegal to sell body parts in this country; however, the practice is common in some developing countries. It is becoming increasingly popular to find compatible donors for transplant organs on the Internet. Many clients needing a transplant organ are telling their life stories on their own Web sites, making electronic pleas for willing donors. One such example reports of a 32-year-old man suffering with liver cancer who took out newspaper ads, set up a toll-free number, and bought space on two billboards along busy highways to appeal for a liver donor. In just a few months, he was rewarded with a liver from a deceased donor. Another example tells of an individual on a waiting list for a kidney for 5 years who paid monthly fees to have his profile posted on www.matching- He received 500 offers for a donation, found a match, and is expected to pay his donor $5000 in transportation costs and other expenses incurred. Currently more than 100,000 Americans are on lists for organs, mostly kidneys and livers. As many as 7000 will die waiting because less than 20% of American adults are registered organ donors and only 50% offamilies agree to donate organs of their deceased loved ones when asked. Bartering for organs is apt to continue.

Persons may place conditions on their organ donation, and donors are carefully screened before their body parts are used. The physician and hospital may be found negligent, so there are strict standards for donor screening.


An autopsy is an examination of a dead body to determine the cause of death. Statutes generally state who can authorize an autopsy and under what circumstances. Coroners or medical examiners may give such authorization. Others include, in order of priority, the following:


1. The surviving spouse 2. Any child of the deceased who is 18 years of age or older 3. A parent of the deceased 4. An adult sibling of the deceased

Autopsies may be complete or partial. In other words, a pathologist may perform an autopsy on the entire body and examine every part and organ or do an autopsy only of the thoracic cavity or the brain. The extremities rarely are involved unless indicated by trauma, prior surgical procedure, or vessel involvement. No parts of the body can be retained for any reason without family consent. If the autopsy is done properly and in a professional manner, the body can be viewed by survivors or at a death ritual.

Some circumstances require an autopsy to investigate the cause of a suspicious death. Autopsies also offer valuable information for medical science and research. Knowledge gained from an autopsy may prevent another person from suffering similar circumstances. Refer to Chapter 7, Public Duties, for further information on autopsy.


Health-care employees will make life-and-death decisions in personal relationships with their fam- ilies and friends, bur rarely in any professional capacity. They often, however, may be involved in conversations with clients or their families who are struggling with the question. They also may be sounding boards to providers involved in the decision-making process. Certainly the law should be followed, religious and cultural practices considered, and the clients’ rights protected when possible, bur no clearly established guideline is available.

Clients who willingly and openly discuss their beliefs and wishes concerning their own deaths should be encouraged to complete living wills, advance directives, and durable power of attorney documents. Legal counsel should be recommended to people if appropriate. Clients should not be



Chapter 16 End of Life Issues 243

made to feel ashamed or guilty because of their feelings about death, no matter how much they differ from your personal feelings.

Understanding and compassion are important. Every attempt must be made to respect the feelings of clients and their families. Families should be allowed to express any guilt they may feel in making decisions. A clear picture of the circumstances, explained by the provider in words clients can comprehend, can alleviate much of that problem. Clients who have strong feelings about having their lives prolonged should be encouraged to make their wishes known.

When health professionals are confronted with situations or questions they cannot handle, consultations and referrals should be sought. Attorneys may be called, and medical societies may offer assistance. Hospital ethics committees may be valuable. Hospital chaplains, staff psychia- trists, and social workers are specially trained to help others with these personal issues and processes involved.


Choices about dying are best made while living whenever possible. Legal documents should be executed and shared with loved ones, family m embers, and health professionals in order to ensure that personal wishes are followed. These choices are not easily made unless there is a willingness to discuss the issue of death and what measures are to be taken when dying. If death can be viewed as another stage in life, even if the final one, it will be easier to have this discussion. Health professionals are bound to abide by the wishes of their clients within legal parameters.

Watch It Now! Are you familiar with end-of-life issues? at http:// lawandethics


1. An advance directive a. Is quite different from the living will. b. Is a release made by parents for children. c. Expresses end-of-life issues. d. Replaces the Patient Self-Determination Act. e. None of the above.

2. Durable Power of Attorney for Health Care a. Appoints an agent to act on the behalf of another. b. Makes decisions related to finances and property. c. Is executed at the time of death. d. Must be recorded in the National Registry. e. Only a, b, and d above.

3. Euthanasia a. Is defined as murder. b. Means bad death. c. Is a term not often used today. d . Literally means “good death.” e. Only c and d above.




244 Unit IV Bioethical Issue

4. Assisted death a. Is illegal. b. Is supported by the American Medical Association. c. Is legal in Washington and Oregon. d. Is under consideration in a number of other states. e. Only c and d above.

5. The five stages of grief a. Are identified by Kubler-Ross. b. Spell the acronym TEARS. c. Are passed through in sequence. d. Apply only to the dying. e. Only a and c above.


T F 1. A national registry is available to electronically store and send advance directives to





any chosen health-care provider.

2. Family members and friends often circumvent prescription or medication orders.

3. Pain and suffering enhance self-image.

4. A common definition of grief work is summarized in the acronym FEAR.

5. Most individuals have a greater fear of suffering than of dying.


1. If you knew you would be put in the same situation as Karen Ann Quinlan or Terri Schiavo, what would you wish? Why?

2. Identify procedures that prolong life that you would be willing to have. IdentifY those you would not choose and justify your responses.

3. A family member comes to the ambulatory health-care setting. She is angry because the hospital “won’t stop the endless testing” and “keeps trying the impossible with my husband.” What is your response?

4. In the case of Ted, in the conflicts that arose among Ted, the family, and the medical profes- sionals, who held the power? Was the comment made by the ICU nurse regarding the advance directive dilemma appropriate? Explain your answer. Discuss your personal reaction to Ted’s case. What went right and what went wrong?


1. Research the Web site “Choices in Death Chronology.” What is your reaction? What surprises you the most?

2. Research the living will and/or advance directive appropriate for the state in which you live. Print the form and fill it out. What difficulty do you have in doing so? Discuss with a family member or a loved one.

3. Research artificial feeding and artificial hydration. Describe the difference. What makes the choice a critical one in the death process?



Chapter 16 End of Life Issues

4. Research the Internet to determine the criteria necessary to be placed on a list for a donor kidney.

5. After Internet research, identify the requirements for an autopsy in your particular state.


Hayes, D. M.: Between Doctor and Patient. Valley Forge, PA: Judson Press, 1977, pp. 9-11.

Munson, R.: Intervention and Reflection: Basic Issues in Medical Ethics. Belmont, CA: Wadsworth, 1992, p. 147.


Compassion and Choices.

Death With Dignity National Center.

National Hospice and Palliative Care Organization.

Scientific American Special Issue.

Washington Death With Dignity Act. www.doh.wa.govj dwda

World Federation of Right to Die. www.

Da “sfl7 .• “· 1 For additional resources please visit VI T ~




Have a Care


As a colleague, friend, confidant, and receiver of Marti Lewis’s resilience throughout the many years of our friendship , I never heard her ask, “Why me?” and never did she come close to giving up.

When Marti and I wrote the first edition of this text, she did not talk much about her illness. “Have a Care” came about because Marti’s story told more poignantly about the importance of being sensitive and compassionate toward your clients than any advice we could possibly have given.

After you read her story, I think you’ll understand why.


It’s early December, many years ago. I hurt. I can’t function at home or at work. The pain in my back is so bad I can’t lift my 5-month-old infant without excruciating pain. It hurts to shower and turn the steering wheel of the car. I go to bed before my husband, and then I can’ t move. Terrible spasms awaken me. I am so tired and have no energy. •

I’m not really afraid. I trust my doctor. I know he’ll find out what is wrong, fix it, and I’ll be back to normal. I have to take time from work to see my doctor. It is inconvenient, but I can do it. No one does my job while I’m gone; it waits for my return. I expect action from my doctor today, and I don’t want sympathy.

Fortunately, I don’t have to wait long in the clinic. The pain is a little less; probably from the addicting psychological release from knowing I’ll soon be better. But I put up a front, too. I won’t cry or tell the doctor how really bad the pain is. The assistant’s greeting is cheerful, but I could use some help with my clothes in the exam room. I can hardly get them off. The bra is terrible, and the pantyhose are worse.

My physician is quiet, professional, and concerned. I feel better just seeing him. His smile is warm. I can tell he cares. The examination is not too difficult. He finally says, “It looks serious. We have to run a lot of tests. It is going to take time to get to the bottom of this.” Laboratory tests and x-rays are ordered. The doctor says that physical activity is allowed until it causes pain. I don’t tell him how hard that will be. He tells me to bring my husband with me the next visit. I have to get dressed and go to the laboratory. The awful bra and pantyhose again, and it hurts to tie my shoes.

The atmosphere is sterile in the laboratory-cool and too professional. My mind is racing while I wait. I’m in torment. “What is it? What about my baby? Will I be able to take care of her? I’ve waited 36 years for her.




r Have a Care 247

The laboratory technician withdraws the blood, and I give the laboratory a urine specimen. The awful pantyhose again! “Collect a 24-hour urine.” They hand me this weird, antifreeze-like container with an opening like a vinegar bottle. It is white and has large black letters: “For 24-Hour Urine Only.” I also am told to collect some feces. I’m handed three unfolded cardboard containers and some tiny spatulas. No instructions.

As I leave, I wonder, how long before I know what is wrong? I’m exhausted. I want to get home and see my husband. I need to talk to someone. Oh, the pain is bad. I hurt.

A telephone call a week later from my physician tells me the progress of the tests, but no indica- tion of a diagnosis. His conversation is very general.

Christmas is a blur. There is no change in my condition. Questions from family and friends are not helpful. They don’ t understand. Neither do I. I hide my true feelings.

I’m back in the doctor’s office a few weeks later with my husband. He had to take time from work. The receptionist seems surprised that my husband is with me. I wonder if she thinks I can’t handle this. Well, guess what, I can’t!

The consultation is hard. My physician is open and honest-he tells us that a metabolic bone dis- order is rampant. I hear him tell my husband that I can have no physical activity. I must take off work. I cannot drive. To fall would be disastrous. My bones are like a loaf of bread. “You know what a loaf of bread is like when it is smashed.” I cannot lift anything, even my baby. I’m not supposed to bend over. My husband asks, “Should we have outside help come into the home?” The doctor says, “Yes.” Immediately I think about the expense. The doctor describes the medications I’ll be taking. But the final blow comes when he says, “That is not all; something else is wrong.” He hopes more tests will reveal what.

A month passes. I hate having someone do my work. A temporary replacement is hired for my job. I don’t ask for help easily. I can’t even get my own groceries. I’m terrified of falling. I can’t vac- uum my floors. I can’t lift my baby to change her. If she cries, I can’t pick her up. When no one is looking, I do lift her. I do carry her. And I do make my condition worse. This creates conflict with my husband. Life is not good.

During this time, there are more tests. More referrals. More doctors. I feel so inhuman. The worst tests are the small bowel biopsies. My physician tells me that they will put a tube in my mouth and pass it through to the small intestine. He says it is painless and won’t take very long.

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