Introduction
Most patients today want to know the truth about their diagnosis and prognosis, no matter how serious their condition may be. However, clinicians do not always receive training in the skills needed to communicate these matters effectively or to assess the patient’s attitudes and preferences. We are attentive to patients’ need for physical care or attention, but we often neglect their emotional and spiritual needs during these difficult times.

Physicians may have difficulty discussing disease progression and impending death because they are physicians! Studies have shown that doctors choose medicine as a career because of an inordinate fear of death. They choose medicine because it is dedicated to defeating death.1 When a patient dies or is no longer responsive to treatment, it is seen as a failure to perform on the part of the physician.

This course relates only to diseases that progress towards death, as opposed to those that progress to conditions such as blindness, deafness, or amputation. The intent is to provide practical guidance for communicating more effectively with patients and their families as they face the many issues involved in the total care of seriously ill and dying patients.

Communication is the Key
Because most patients want to know the truth about their diagnosis and prognosis, the ability to discuss these issues, and to solicit patients’ views about resuscitation or hospice care, are important verbal skills.

Why is good communication necessary?

Good communication is necessary in order to:

help establish rapport with the patient
identify the types of information the patient wants
ensure that patients understand enough to make informed decisions
address the patient’s emotions in a supportive way
help the patient express his or her major concerns
involve the patient in the treatment plan
Communication does not always depend on words. Older children, adolescents, and young adults (as well as older adults who are simply afraid to die) use “symbolic verbal language.” Unfortunately, we do not teach symbolic language sufficiently in our nursing schools, medical schools, seminaries, and social-work schools. This type of communication involves indirect, seemingly unrelated questions and comments, which need to be interpreted as the need for direct and honest conversation.

When asked, most patients say they would have been better off if their primary physician had been honest with them at the very beginning. If they had been informed very early that they had a terminal illness, they would have had time to come to grips with it and ask for further details when they were ready to hear them. This request, however, was accompanied by two conditions:

1. Allow for hope. Hope at the beginning of a serious illness is totally different from the hope at the end of life. At the beginning, a patient hopes that the diagnosis is not true. When diagnosis is verified, the hope becomes associated with cure, treatment, or prolongation of life. When those three outcomes are no longer probable, the patient’s hope changes to something not associated with cure, treatment, or prolongation of life. Rather a new hope emerges that “I hope my children will make it through this” or “I hope God accepts me in Heaven.”

2. Do not desert the patient. The physician needs to still care for the patient as a human being, even when his or her condition no longer fills the physician’s need to cure, to treat, or to prolong life.

Barriers to communication
Communication involving disease progression and end-of-life issues often suffers due to conflicts that arise between the physician and the family or designated proxy. Authors at the University of Michigan Medical Center have identified three general categories of conflicts regarding end-of-life care: family or proxy characteristics, physician characteristics, and organizational and social characteristics. “By considering this list of potential sources of conflict, clinicians can identify more readily and accurately the causes of difficult interactions with families of terminally ill patients regarding decisions to limit treatment.”

Family or proxy characteristics: One of the most difficult situations for health care providers to face is how to handle conflicts with families over forgoing life-sustaining treatment. Physicians may feel that their competence or judgment is not trusted, while families may feel isolated, misunderstood, or abandoned, and may begin to doubt the physician and staff’s commitment to the patient’s well being. “Families may disagree with clinicians because they do not understand the medical situation.”

Reasons for this lack of understanding include:
1. The family or proxy may be psychologically unprepared to hear the patient’s diagnosis or prognosis.

2. “Bad news” is often poorly processed and imperfectly remembered.

3. Poor communication with the physician may increase misunderstanding.

4. Families obtain information from multiple sources (TV, Internet, friends and relatives)

5. There may be a gap between the physician’s values and those of patients and/or their families.

Physician characteristics: Several physician characteristics contribute to conflicts regarding end-of-life communication and decision-making, including:

1. Physicians, like patients, may also be uncomfortable with prognostic uncertainty.

2. Physicians may be uncomfortable discussing death or they may be troubled by the thought of a medical “failure.”

3. Physicians tend to overestimate chronically ill patients’ quality of life, and are more likely than patients or families to think such patients would choose to forgo life-sustaining treatment.

4. Religious or philosophical beliefs about the sanctity of life may prevent physicians from offering treatments not intended to prolong life.

5. Physicians may vary in their beliefs and attitudes regarding the proper role of families and proxies in decisions involving end-of-life care.

6. Physicians may have difficulty dealing with the different value systems of others.

7. Physicians may be insecure about limitations of their own competency or skill

8. Physicians may be unaware of prognosis or treatment options and misinform the family or proxy.

9. Physicians may not understand ethical, legal, or hospital policies regarding end-of-life care.

10. Lack of training in symptom management may lead to inappropriate care.

11. Physicians may be poorly trained in interpersonal communication regarding end-of-life care decisions, leading to misunderstandings, confusion, and frustrations.

12. The culture of the hospital may lead to “high-tech” interventions and avoidance of time-consuming conferences with family members.

Social and organizational characteristics: Policies within hospitals and health-care organizations may also exacerbate communication conflicts:

1. Hospital policies (such as restrictive visiting hours) may interfere with end-of-life care decisions by minimizing contact between patient and family or proxy. 2. Organizational policies often require that physicians write orders limiting the duration or extent of life-support treatments. 3. Organizations and physicians may have legal fears regarding end-of-life care decisions, and these fears may influence decisions about life-sustaining treatment.

Coping with Long-Term Illness
The major issue for patients facing long-term illness is loss of such valued assets as dignity, mobility, or physical appearance. They need support and encouragement in coping with the profound changes resulting from these losses.

You can help patients and families navigate the maze of options and responsibilities that arise during this time, by familiarizing yourself with available options that may be helpful for each individual patient. The goal is to help patients change their attitude from “dying of an illness” to “living with an illness.”

Major issues faced by patients include finding appropriate care, paying for care, and obtaining counseling and support services.

Finding long-term care
Long-term care options include skilled nursing home, assisted-living facility, and home-care services. Selection depends largely on the patient’s ability to function and perform activities of daily living, availability of services, and on ability to pay for these services. A hospital social worker or discharge coordinator may be able to assist patients in locating appropriate facilities and services.

Paying for long-term care
The United States has no coherent policy for dealing with long-term care needs. Medicare, available to the elderly and disabled, covers acute medical care and very limited nursing home care as long as it is linked to a hospital stay. Federal Medicare rules allow coverage if:

The patient has had a prior hospital stay of at least three days and is admitted to a nursing home within 30 days of discharge for the same condition.
The patient requires daily skilled nursing or rehabilitation services.
The nursing home is Medicare certified.
A medical professional certifies that skilled nursing is needed.
Medicare covers home services as long as they are “medically reasonable and necessary.” This means that coverage applies for services of skilled nurses, home health aides, medical social workers, and physical and occupational therapists. Medicare also covers the full cost of some medical supplies at 80% of the approved amount of durable medical equipment such as wheelchairs, hospital beds, oxygen supplies, and walkers.

Medicare pays for home care when a patient requires intermittent skilled nursing care, physical therapy, or speech therapy, under the following conditions:

The patient is confined to home.
The doctor determines that home care is necessary at sets up a plan for receiving care.
The home health agency participates in Medicare.
Medicaid spends 44% of its outlays for long-term care, by paying for about half of the nation’s $70 billion nursing home bill. Two of every three nursing home residents (mostly elderly) receive assistance from Medicaid.

Private long-term care insurance pays about 2% of the nursing home bill, and 14% of nursing home residents start by paying the cost themselves, and end up qualifying for Medicaid within a year, after spending their life savings.

Counseling and support services
Patients and caregivers may benefit from the services of a counselor, therapist, or psychologist, as well as religious counseling. Counseling may be disease-related or caregiver-related, such as that provided by disease-related support groups and organizations. As the patient’s disease progresses, counseling may become increasingly important, especially for caregivers who must respond to the stresses and responsibilities that accompany sometimes devastating changes in the patient’s condition.

Other types of counseling, such as spiritual help or family counseling, may be needed or sought. Relationships become strained and older issues emerge as people try to deal with catastrophic illness and new responsibilities.

Breaking the News
In the late stages of disease, there comes a point when treatments are no longer effective, or when added treatment only brings added suffering not justified by the results. Physicians can help families by communicating honestly at this point, rather than continuing to suggest new treatments that will probably fail or only add to the patient’s suffering.

Key principles on communicating with patients and families about end-of-life issues

1. Talk directly with the patient first. Do not assume that he or she won’t be able to take the bad news. The physician’s role in most cases is to be a catalyst for determining how much a patient knows or understands.1

2. Solicit easily obtainable information from a patient first, such as major worries and expectations.

3. Try to clarify any faulty or incomplete information the patient may have.

4. Look for any inconsistencies between the family’s view and the patient’s view of the situation, and encourage more interaction. A recent study of family members at tertiary care centers resulted in three suggestions for health care providers: facilitate improved interaction between the dying patient and the family; improve interactions between caregivers and patients/families; and create a setting more conducive to these interactions.5

5. Encourage questions and answer them appropriately. Don’t avoid answering any questions the patient or family may ask. Be direct but kind.

6. Be careful in giving a time frame. After all, miracles do happen. If asked, you might give a “best guess” statement such as “80% of patients at this stage can expect to live another 4 to 6 months.”

7. Look for “symbolic” cues that may express indirectly the real feelings of the patient or family.

8. Obtain information about the patient’s personal, family, and social situation, including any problems that may exist.

9. Find out how the patient really feels about his or her illness.

10. Ask open-ended questions, avoid interruptions, and let the patient talk freely.

11. Provide adequate information about diagnosis, treatment, side effects, and prognosis, checking to be sure you are understood. Be sure to describe consequences as well as potential benefits for any treatment options that are available, and assure patients that withholding such treatments is also an option.

12. Try to understand the patient’s viewpoint and be supportive.

13. Reassure patients that you will continue to be involved in their care.

The five stages of grief
Keep in mind the five stages of grief and do your best to respond to each stage as you observe it:

1. Denial (“no, not me”). Ask honest, straightforward questions. The patient will tell you how much he or she knows. Often patients show “pseudodenial” requiring only direct conversation to reveal that they know more than they wanted to let on. “When a patient has one human being with whom he can talk openly, he is then able to drop his stage of denial and go on to the second stage.”

2. Rage and anger (why me? or why now?). Patients in this stage may be nasty, ungrateful, cynical, and make life difficult for people around them. Physicians need to try not to judge these patients, but rather try to understand what they are really angry about. They are not usually angry with you, but at what you represent ‘health, energy, and all the other aspects of life they are losing. “If we can help them to ventilate their feelings of grief, anguish, rage, and anger without judging them, then they will proceed to the peculiar stage of bargaining.”

3. Bargaining (yes, it’s me, but?). Patients in this stage typically promise something, usually to God (such as going to church or synagogue or donating eyes or kidneys), often in exchange for prolongation of life. The patient looks rather comfortable and is at relative peace. During this time, patients start to concern themselves with putting their house in order, making a will, or arranging care for their children. Patients hardly ever keep their promises, and more bargains are added as each time extension arrives. When the patient finishes bargaining, he or she often becomes sad and enters the next stage.

4. Depression (yes, it’s me). Patients go through two types of depression. In reactive depression, they mourn past losses and talk about the meaning of a lost breast or leg, or about their colostomy. Since we have all experienced losses, we generally do fairly well with empathizing with these patients. It is more difficult when they move into silent grief or preparatory grief, a different type of depression where they stop mourning past losses and start mourning future losses. They start to mourn their own death and the fact that they are losing all the people and things that have meaning to them. They do not talk much during this stage, because they are unable to verbalize their anguish and sadness. They prefer to sit quietly with one or two loved ones, and holding a hand or receiving a touch becomes more important than words. “Men have much more difficulty than women during this stage, because in our society it is supposed to be unmanly to cry.” We need to resist the urge to deflect our feelings of discomfort when we are with these patients, by “checking infusions and transfusions that run perfectly well” or by coming into the room saying “Cheer up, it’s not so bad!” Rather, we need to allow patients to grieve and encourage patients to cry, not hide their tears. They are then able to get through preparatory grief more quickly and reach the last stage.

5. Acceptance. At this stage, the patient does not want visitors, does not want to talk with anyone, has usually finished any unfinished business, and no longer hopes for cure, treatment, or prolongation of life. “It is a feeling of inner and outer peace.” Some patients reach the acceptance stage before their families do. A loved one may beg for additional procedures to prolong the patient’s life or frantically implore, “Don’t die on me!” This behavior makes the dying patient feel guilty, and it is then difficult to reach a peaceful stage of acceptance. “If you truly want to help dying patients, you cannot exclude the family.” If the family can finish their unfinished business before a patient dies, then there is no grief work to do whatsoever after death, although there will always be natural grief.”

It is important to differentiate between acceptance and resignation. Acceptance is a feeling of victory, peace, serenity, and positive submission to what cannot be changed. Resignation is a feeling of defeat, bitterness, and “what’s the use, I’m tired of fighting. Dr. K’bler-Ross estimates that about 80% of nursing home patients are in a stage of resignation.

“Dying patients are marvelous teachers. When you make a mistake, and you will make many mistakes in this type of counseling, the patient will most often correct you immediately.”

Preparing for Death
Once it is clear that the patient’s death is approaching, you and your staff will need to work closely with the patient and family to ensure that the patient’s wishes are understood and followed. If the patient wishes unlimited visits from family or loved ones, try to arrange for this, especially in the case of dying children. Encourage the patient and family to prepare or review documentation of the patient’s wishes and preferences.

Documentation should be based on shared communication between physician, patient, and family. Discussions should be continual and broad in scope.

Encourage patients and families to attend to legal issues such as exploring insurance benefit coverage, qualification for entitlements (such as Social Security disability benefits, veteran’s benefits, Medicaid, or legal aid), and it is recommended that all patients complete a will, regardless of the size of their estate.

If a patient is expected to die at home, there may be questions about who is legally recognized in your state to pronounce the patient dead and to sign the death certificate. It may be helpful for the attending physician to write a letter in advance stating that the patient is terminally ill and planning to die at home without life-support measures, and/or to sign an out-of-hospital DNR order that would be legally recognized in your state.

Patients also need to address preferences regarding funerals, burial, or cremation, and how they want to be remembered. Some patients may want to donate their body or body parts to medicine, a decision that requires special procedures at the time of death to ensure that body parts are usable. “The more of these questions that can be answered in advance, the fewer decisions must be made by family members in the acute shock immediately following the death.”

Advance directives
By definition, advance directives are written documents that provide instructions for providing health care should the individual become unable to express his or her desires about medical treatment. Although any competent adult has the right to consent to or refuse any medical treatment, today’s high-tech, complicated medical systems can make this right difficult to ensure.

Advance directives such as living wills or durable power of attorney (DPA) for health care (health-care proxy) give people the opportunity to declare their treatment preferences in advance, before they are no longer able to communicate. A living will lists the types of treatments a person might want or not want under certain medical circumstances (for example, no heroic measures if there is no chance for recovery). A DPA allows people to express such preferences and also to name a trusted friend or relative to speak on their behalf about treatment decisions, if they cannot. A DPA is generally more useful than a living will, because the designated proxy can make decisions that may not be clear from a written document. However, a living will may be a better choice for patients who have no one else to make decisions for them.

Although advance directives provide only crude directions for situations where complex choices are needed, they can lend a focus for the patient’s values and goals for medical treatment, especially if they also designate a trusted proxy to represent the patient’s feelings in such situations.

Laws about advance directives vary from state to state. Check out the laws in your state regarding the scope and requirements that apply to advance directives.

Do-Not-Resuscitate (DNR) orders
A do-not-resuscitate order is a request from patients to withhold cardiopulmonary resuscitation (CPR) if their heart stops or they stop breathing. Unless such an instruction is given, hospital or emergency staff personnel will try to help all patients in such circumstances. Doctors and hospitals in all states accept DNR orders.

Patients who are not likely to benefit from CPR include people with metastatic cancer, kidney failure, severe infections such as pneumonia, and people who need lots of help with daily activities. Patients with these conditions need to be aware that they can use an advance directive form to issue a DNR order.

Other considerations
Patients may want to use their time to “get their lives in order” by resolving relationships, distributing their property through wills and other documents, and making arrangements for funerals, interments, and memorial services.

Patients from various religious and cultural backgrounds have traditions that need to be followed and respected.7

A social worker or chaplain may be able to help indigent families or patients who are alone.

End-of-Life options and Issues
Sudden-death issues
So far we have talked only about terminally ill patients and the adjustments they and their families need to make to help them pass through this difficult time. Of course, this is possible only if there is time between the onset of illness and the resulting death. What about the thousands of adults and children who die suddenly and unexpectedly in emergency rooms and on operating tables? Survivors are not at all prepared and they often react with great shock to the tragic news that death is imminent, just at a time when clear thinking and fast actions are needed.

The emergency room physician must immediately do whatever is necessary to maintain cardiac function, clear airways, or start oxygen or IV fluids. No one has time to answer desperate questions from relatives while trying to take care of the physical demands of the patient. The critically ill or injured patient is often in a state of shock, and is usually not even aware of what is happening.

At such times, a specially trained volunteer, social worker, or hospital chaplain could help by being immediately available for the comfort of relatives. Volunteers can sit with relatives, listen to them, or offer to make phone calls. These workers would be on call 24-hours a day, especially at night when the need may be greatest. Relatives should not be left alone, except at their own request and only if they do not seem to be in emotional turmoil.

It is important to provide privacy for relatives in the form of conference rooms or a so-called “screaming room” where families can vent their feelings in privacy.

Physicians may wonder in the case of a family accident, where several people are seriously injured, what to say to a man who asks about his wife who may have died. If the man is in critical condition, perhaps needing surgery, it is best to wait to tell him that his wife has died. He might go into shock or lose his will to live if he gets the news immediately. If he asks directly if she is dead, however, tell him the truth, perhaps asking him to fight for his own recovery “for her sake.”

In general, we need to be sensitive to each individual and decide how much the patient is able to hear. It is best to be honest without shocking or giving unnecessary information. The people who have the most difficulty are those to whom information is given in a kind of black-and-white fashion, without allowing for hope. The patient needs to know that you are not going to lie to him but you are going to try to prevent this from happening.

“Breaking the news” is never easy, but it becomes especially difficult when death is sudden or unexpected. If done skillfully, someone else might prepare the family that the situation is grave, but often there is no time to prepare the family. In any case, the doctor should always be the one who actually tells the family.

It is very hard to predict how anyone will react. People who are not in a state of denial may berate the doctors and nurses, accusing them of not doing enough or of not doing the right things. They may be angry with other medical personnel or with each other. All we can do is try to understand that this behavior is a natural expression of their anguish, pain, and grief.

Give families the opportunity to see the body (after washing and preparation) before they leave the hospital. (Leave the face uncovered if it is not too mutilated, and if necessary, elevate the head a few moments to clear the sinuses. Bandage mutilated parts as for a postoperative patient.) Inform the family of any disfigurement. Many people who have not been allowed (or didn’t want) to see the body have had trouble later on in facing the reality of the death.

It is often helpful to families if someone on the emergency room staff (particularly the volunteer or worker who assisted them) would call families about one month after the accident. By this time, people are usually past the stages of shock and denial. Invite them to return to the emergency room to talk. Many families appreciate this opportunity to ask questions as well as knowing they are not alone in their grief.

Staff issues
Nurses and physicians are involved in many unsuccessful resuscitation attempts, and they bring with them their own special feelings, religious beliefs, and perhaps unresolved grief or bereavement. As soon as possible, it is important to take time to talk about the situation they have been through, so everyone on staff can vent their feelings too. Staff members need a screaming room as badly as family members of accident victims!

Heroic measures
“Heroic measures” refer to interventions that may be applied without consideration of the patient’s condition. Examples include cardiopulmonary resuscitation or insertion of feeding tube. Families facing decisions about such treatments need to know the difference between consciousness and awareness, the latter not being dependent on a functioning brain.

Controversy surrounds the use of artificial means for prolonging life in patients who have no real chance of having any real quality of life. These patients exist but don’t live in nursing homes, extended care facilities, or at home, and are a tremendous burden (financially, emotionally, and physically) to families and caregivers. How long do we need to keep these people alive at all costs? Even the decision to use antibiotics must be considered carefully for these patients.

Palliative care (comfort care)
Palliative care, also called comfort care, is directed primarily toward providing relief to the terminally ill person through symptom management and pain management. The goal is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. Well-rounded palliative care programs also address mental health and spiritual needs. The focus is not on death, but on compassionate specialized care for the living. Palliative care is well suited to an interdisciplinary team approach that provides support for dying individuals as well as those who love them.

Palliative care may be delivered in hospice or home care settings. Because medical needs vary depending on the patient’s disease, specialized palliative care programs exist for cancer, AIDS, and organic changes in the brain that lead to coma or dementia. Good quality palliative care can make the difference between a gentle death and one in which suffering is so terrible or prolonged that assisted suicide becomes an attractive alternative.

Because it can take some time to tailor palliative care to each person, it is best to offer some level of professional care before a crisis exists. Families often feel it is “to soon” to start palliative care and wait until death is very near. This limits its effectiveness. A better approach is to arrange introductory home meetings or hospice visits before palliative care is needed and obtain counseling from a hospice professional who can provide suggestions about care arrangements. In other words, put the support network in place before you need it.

When people start receiving palliative care, their loved ones may experience increased feelings of grief and bereavement. These feelings may intensify over time, so that providers need to be sensitive to changing needs for support and encouragement. Many support groups are available to help patients and families through this process.

Pain control issues
Pain management is one of the most important aspects of care for terminally ill patients. Aggressive pain management is a specialized area, often requiring consultation with a pain management specialist. Patients may wish to obtain a specialist opinion if their own physician is unable or unwilling to provide adequate pain management.

Although acute pain (which is sharp, localized to a physical source, and limited in duration), is usually intermittent or short-lived, chronic pain becomes a constant companion, dominating the patient’s future through dread of more pain, as well as memory of past pain. It creates a sense of helplessness often accompanied by depression or anxiety.

Chronic pain from cancer has three basic sources: 1) the direct result of the tumor’s growth, by invading, compressing, or obstructing parts of the body; 2) side effects of medical treatments such as surgery, chemotherapy, or radiation therapy; and 3) coincidental pain (such as bedsores), as a byproduct of the illness.

Hospice patients can use a body chart to pinpoint where their pain is located, rating their pain from 0 to 10. They need to be reassured that their pain is taken seriously, and dosages must be adapted and frequently modified according to changing needs.

“It is better to prevent chronic pain, when possible, than to treat it each time it reappears” Patients and families should be educated about the goals of pain treatment and why it is essential that pain medications be given on schedule around the clock,” in order to keep a constant minimum level of pain medication in the bloodstream, so the patient can relax or sleep. They also need to know that once the cycle of pain and fear is broken, dosages can be cut back to a lower level.

Although related, “pain and suffering are not identical experiences.” Some people in extreme pain, such as during childbirth, do not experience their pain as suffering, which the medical philosopher Eric J Cassell, MD defines as “a threat to the person’s integrity or sense of wholeness.” Patients may suffer from an attack to their wholeness even when their physical pain is not so severe.

Alternative treatments may help. These include many holistic methods, such as visualization, active relaxation, music and color healing, or hypnotherapy.

“Pulling the plug” on futile treatments
When life-sustaining treatment is discontinued because of medical futility or patient decision, we become uneasy about our actions, often because we fail to distinguish clearly between causing a patient’s death or merely allowing the patient to die. For example, a permanently unconscious ventilator patient is alive until the physician removes the ventilator, after which the patient dies. If the ventilator is never used, however, death is neither caused nor precipitated by the physician, but is clearly the result of the patient’s disease process. Because of this conflict, many physicians are more comfortable with not starting treatment than with stopping it.

The counter to this concern is to regard the ventilator as an optional form of external support. Although the ventilator does sustain life, it is clear that the patient may refuse to use it. If the terminally ill patient had prepared an advance directive refusing mechanical ventilation, then the ventilator would not have been started. On the other hand, if the ventilator was started before the patient became terminal and irreversibly incapacitated, the ventilator should be discontinued once these conditions have been clearly met. In discontinuing use of the ventilator, the physician is not causing death but is appropriately removing a form of external medical support that the patient had refused in advance. The natural forces of the patient’s illness continue unopposed once the ventilator is removed, and the patient dies. In situations such as these, families need to understand that the patient’s death is caused by the disease rather than by the physician or by failure on their part to do all they could for the patient.

Physicians have no ethical obligation to provide treatment that is futile. Unfortunately, medical futility can have several meanings. Failure to clarify the term can lead to miscommunication. For example, in explaining to a patient that CPR would be futile, it is not uncommon for the physician to mean that CPR would have a very low chance of success, while the patient interprets this to mean that CPR has no possibility of success. If the patient then agrees to forgo CPR, the decision would have been based on a misunderstanding. “For this reason, it is important to be explicit about these matters by using plain language instead of hiding value judgments under the cloak of medical futility.”

Physicians occasionally encounter dilemmas in end-of-life care when a patient uses an advance directive to demand treatment in order to live as long as possible without any regard to quality of life. If continued treatment is then judged to be futile, serious conflicts may arise. Such conflicts may be avoided in several ways:

1. Potential conflicts in end-of-life care management philosophy should be addressed early in the patient-physician relationship. Experience has shown that African-American patients and families are more likely than other ethnic groups to resist when the option to withhold or discontinue treatment is suggested.

2. Patients and proxies should be made aware that physicians are under no obligation to provide futile care.

3. Futile or medically inappropriate care should not be offered “theoretically” with the expectation that it will be refused.

4. The advance directive can guide end-of-life care but does not substitute for physician judgments.

5. A “fair process” end-of-life care management process (facilitated by subspecialist and ethics committee consultations) can provide limited structure to the process of patient-physician deliberation and conflict resolution in such cases.

Physician-assisted suicide
The term euthanasia applies to any situation where the physician actually takes the patient’s life, rather than allowing the patient to die from natural disease processes. Although the term has been variously defined, euthanasia usually refers to an act in which the physician directly and intentionally causes a patient’s death by medical means. For example, a physician commits euthanasia when he or she injects a lethal amount of potassium chloride into a patient for the purpose of terminating the patient’s life. This situation distinguishes euthanasia from murder because its motive is merciful rather than malicious. Nevertheless, it is a form of homicide and remains illegal in the United States.

When the physician performs euthanasia with the consent of the patient, it is called voluntary euthanasia. When performed without patient choice, such as when the patient is incapacitated, it is called nonvoluntary or nonchoice euthanasia.

Physician-assisted suicide is a form of voluntary euthanasia that is legal in the state of Oregon. In November 1994, Oregon voters approved a ballot initiative that made it legal for a physician, at the request of a terminally ill patient, to prescribe a lethal dose of medication for administration by the patient. Similar legislation is being considered in other states. These developments, along with growing pressure from advocacy groups and information from opinion polls, suggest that the legalization of physician-assisted suicide has substantial public support. Although major health care organizations (AMA, American Nurses’ Association, and American Geriatrics Society) oppose the legalization of physician-assisted suicide, the medical profession is increasingly acknowledging that physician-assisted suicide may have a role in terminal care.

If physician-assisted suicide is legalized, physicians will need to gain expertise related to understanding motivations for requesting such an option, maximizing palliative interventions, and other considerations. The onset of functional and cognitive decline will need to be estimated along with life expectancy. The physician’s position on physician-assisted suicide must be open to discussion with the patient. Protecting the patient’s right to confidentiality must be balanced against the need for health care professionals and institutions to know about the patient’s choice. Insurance coverage and managed care options may be affected. These are just some of the issues that need to be addressed through research, education, and decision making by individual physicians as the debate continues.

Patients may ask you about this option. If you practice in a state where physician-assisted suicide is legal, you may refer the patient to a physician who is known to provide this service without relinquishing your relationship with the patient. Patients often perceive this option as a comforting alternative, even if they never use it.