Ethical Issues in Palliative Care

INTRODUCTION

The famed 17th century playwright, Moliere (1622-1673) once said:

“It is not only for what we do that we are held responsible, but also for what we do not do.”

Nowhere is that more true than in the area of medical ethics. And that truth makes finding the answers to ethical questions sometimes very difficult. This monograph does not provide those answers. Instead, it introduces some of the ethical issues that arise when you deal with incurably ill patients and palliative care. Our purpose is for you to have already given serious consideration to what action you might take when such issues arise. It is important to point out that just because something is legal does not make it ethical, nor is it unethical simply because it is illegal. Laws change and evolve according to community mores. Ethics should not. In the field of medicine amazing changes and advances in technology have created gray areas. Most medical associations and organizations have established a code of ethics, yet there is very little consensus on what is right and wrong. It is most often up to the physician to determine the ethical course of action. For your convenience we have listed Website addresses of several of the major medical associations in Appendix L.

Palliative Care Defined
One definition of palliative care is “to reduce the violence of (a disease)22”. The working definition of palliative care that is employed by the Health Resources and Services Administration (HRSA) of the United States Department of Health and Humans Services is:

Palliative care is patient- and family-centered care. It optimizes quality of life by active anticipation, prevention, and treatment of suffering. It emphasizes use of an interdisciplinary team approach throughout the continuum of illness, placing critical importance on the building of respectful and trusting relationships. Palliative care addresses physical, intellectual, emotional, social, and spiritual needs. It facilitates patient autonomy, access to information, and choice.

In other words, palliative care is intended to ease a patient’s suffering in as dignified and respectful a manner as possible.

What this definition doesn’t do is define boundaries. How far can and should a physician go to alleviate suffering? Can and should the physician divorce her/himself from personal religious beliefs, or lack thereof, when counseling a patient or a patient’s family? Just exactly what are the parameters of a patient’s right to die? Conversely, the patient’s right to stay alive as long as possible? No field of medicine offers as many confusing, often contradictory opinions of what is and what is not ethical than palliative care.

In 1986, an article in The New York Times quoted Mark Siegler, MD, of the University of Chicago Center for Clinical Ethics in part as saying,

“The coming together of two laudable movements — death with dignity and cost-containment — concerns me. You start with those in a permanently vegetative state. Then you move to the mentally retarded, the permanently senile, seriously ill, defective newborns, and the physically handicapped. Patients have a right to die. But do they have a duty to die?”23

We will begin by exploring the ethics of a patient’s right to die.

The Right to Die
“The Right to Die” is actually a misnomer. In the United States a patient only has a right to refuse some or all forms of medical treatment, even if that refusal guarantees death. A legal “Right to Die” exists in only one state. In fact, when the United States was founded, suicide was illegal in all 13 colonies. Over the years most states rescinded those laws, but a handful still have laws against attempted suicide. And physician- assisted suicide would be considered a felony in many.

Publicly, the concept of a physician assisting a patient to die is a relatively new topic. Privately, this is something that has happened for years. For example, an 82-year old woman recounts her grandfather’s death over 60 years ago.

“My grandfather was in his 70’s when he had a stroke. He was totally unaware of his surroundings and unable to communicate. He had been sent home from the hospital to be cared for by my parents until he died. Every day for about a week his moans became louder and more constant until finally he was literally screaming in pain. My mother called the family doctor, who told her he would come by that evening after office hours. He kept his word. He went into grandpa’s room and told everyone to leave. I could hear him talking but couldn’t understand what he was saying. A few minutes later he came out of the room, told my mother that everything was going to be alright, then left. About a half-hour later grandpa died very peacefully.”24

This was not uncommon. Talk to any doctor or nurse who was treating patients prior to the 1950’s and most have witnessed similar incidents — a horribly deformed baby who was “let die.” A person in extreme pain who was “helped along.”

It wasn’t a sudden collective surge of conscience that ended these practices, it was closer scrutiny. As doctors quit making house calls, and women quit giving birth at home, the role of hospitals changed. They became places where patients received care, so medical staff actions became more visible.

Another thing that happened is the battle for Civil Rights. Members of minorities were demanding equal rights with the majority; women were demanding equal rights with men. Citizens became very aware of their rights, and this awareness expanded to health care. The concept that a person has a right to decide what, if any, medicine or medical treatment he or she will accept came to the fore. Therefore, if a person is mentally competent and doesn’t want medical help, the physician can’t do anything, even if the person is going to die.

There are exceptions. An example is that a medical team can try and save the life of an unconscious person who has attempted suicide, even if there is a note saying that the person wants to die. That is because in the United States there is an assumption that a person who is suicidal might be suffering from some sort of mental illness and is therefore not competent. If the person is conscious and able to communicate, that person can refuse medical treatment — but again, because of a presumption of mental illness, as soon as the person loses consciousness the medical team can try to save her life.

While in our culture there is an assumption that a suicidal person is mentally ill, in some other cultures suicide is an acceptable, even honorable act. In still others, as we have seen all too often in the past few years, suicide is heroic. In our culture a physician is legally safe in trying to save the life of an apparent attempted-suicide.

On the other hand, if a patient is dying for reasons that are not self-inflicted, for example an accident or illness, and refuses medical treatment then the physician is legally obligated not to try and save his/her life. That is because the Supreme Court has ruled that what is commonly called the “Due Process Clause” of the 14th amendment25 extends to matters of health care. The clause, which is found in section one, states:

“All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.”

The relevant phrase is “abridge the privileges or immunities…” A person is immune from being forced to receive medical care.

Legalities aside, if a person refuses medical care, and that refusal is going to lead to death, isn’t that suicide? And if it’s ethical to let people die sometimes, why isn’t it ethical all the time?

Another issue is palliative care. If a person is dying due to a confirmed terminal illness, he or she is entitled to palliative care. If a person is dying by choice, is that person entitled to palliative care, or if a patient refuses some part of medical care, does that necessarily expand to all care?

Is it ever ethical to let a human being suffer unnecessary pain if you can stop it?

A simple phrase in the HRSA definition of palliative care leads to another ethical dilemma. That phrase is “Palliative care is patient- and family-centered care. It optimizes quality of life by active anticipation, prevention, and treatment of suffering.”

How far can and should a physician go in meeting the requirement to offer “...prevention and treatment of suffering”?

Again, the ethical perspectives can be widely diverse on this topic. And they begin with the subject of Advance Directives.

THE ETHICS OF ADVANCE DIRECTIVES

Quite simply, an advance directive is a document created by a person that directs the type of medical care she wants to receive if for some reason she becomes unable to speak for herself. There are several different advance directives:

  • The Living Will
  • Health Care Proxy/Durable Power of Attorney
  • Do Not Resuscitate Order (DNR)

The National Health Cancer Institute® provides an excellent definition for the Living Will and the Health Care Proxy/Durable Power of Attorney.26

  • A Living Will is a set of instructions documenting a person's wishes about medical care intended to sustain life. It is used if a patient becomes terminally ill, incapacitated, or unable to communicate or make decisions. Everyone has the right to accept or refuse medical care.
  • A Health Care Proxy is an agent (a person) appointed to make a patient's medical decisions if the patient is unable to do so. The Durable Power of Attorney for Health Care is the legal document that names a patient's health care proxy. This type of advance directive is often made “just in case,” when the person is still in excellent health. It is often executed not just to make certain that the individual’s wishes are followed, but to protect vulnerable family members from having to make the decisions, or worse, for the decisions to become mired in the legal process.

The American Academy of Family Physicians offers the following definition of a DNR:27

  • A Do Not Resuscitate (DNR) order is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing.

Advance directives came into being when medical technology reached the stage where a human being can be kept “alive” indefinitely. A machine can keep the heart beating, another machine can breathe for a patient, and a tube and nutritional supplements can be used to feed her. Combined, these present a grim prospect, but one that has become more and more common. It used to be that a person was considered dead when the heart stopped beating and breathing ceased. But with the advance of technology that changed too.

Every state has its own set of regulations for what is and is not acceptable within the context of an advance directive, but in some form or other they are legal everywhere. Unfortunately, every state also has developed its own “new” definition of legal death. In order to avoid legal entanglements that could last for years, in the 1980’s a Uniform Determination of Death Act (UDDA)28 was proposed for adoption by all states. It stated that …

“An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”

The UDDA was endorsed by the American Medical Association and the American Bar Association, and has been adopted by every state in the Union. A copy is included as Appendix I. For the moment, assume that all advance directives are legal. The question is, are they ethical? For centuries the first duty of a physician to his patient is “Do no harm.” Is letting a patient die, even if there is no hope of recovery, doing no harm? Further, what if a situation arises where a patient has a health care proxy and the physician has come to believe that the proxy is not making decisions in the best interest of the patient? Or that the patient, although terminally ill, has several months of viable life left? Should the physician still follow through with whatever orders are issued by the health care proxy?

Consider this:

A man 35 years old has been admitted to the hospital after a fall. He goes into a coma and even though his breathing is labored and his heart beat irregular, his brain shows some activity. His health care proxy is called and says the patient would not, under any circumstances, want to be “hooked up to machines,” and she wants them turned off. If that happens, he will probably die, even though you feel there is some opportunity for at least partial recovery. Legally, you might be obligated to turn off the machines, but ethically should you?

If the patient is going to be totally dependent on outside sources for survival for whatever is left of the rest of his life, do you have the right to end his life? That is what you are doing when you “pull the plug.” It might take minutes, it might take days or weeks, but sooner or later the patient will die because of your action.

That brings up another ethical issue. At the request of the health care proxy, or the patient’s living will, all life support machines are turned off, and the feeding tube is disconnected, all fluids are stopped — but the patient doesn’t die within a few hours, or a day or two. Should you reconnect the fluids? Or the feeding tube? If a patient’s heart can beat on its own, and he can breathe on his own, is it ethical to let him die of starvation or dehydration?

Or—the patient’s mother comes to you and asks you to ignore the health care proxy’s wishes. The health care proxy, by the way, is not a relative. Should you ignore the wishes of a blood relative?

There is another side to end of life options. What if the patient has no close friends or next of kin, and there is no advance directive. If the issue has to be determined by a court there is a possibility that it will become part of a “John Doe” legal action by a group that believes all life is sacred. You don’t agree. This is a dead person who’s vital functions are being operated by remote control. You have the opportunity to turn off the machines and simply report the time of death. You will never get “caught.” What would you do? By leaving the person on the machines are you prolonging life, or are you prolonging death? Which do you consider the ethical course of action?

THE ETHICS OF PHYSICIAN-ASSISTED SUICIDE

As stated previously the “Right to Die” only encompasses physician-assisted suicide in one state — Oregon. This was made legal in the Oregon Death With Dignity Act that became a law on October 27, 1997 and took effect as of January 1, 1998.29 Ever since then there have been repeated legal challenges trying to overturn the law, but so far it has been upheld. While all other states reject physician-assisted suicide, each has its own laws regarding what is acceptable in palliative care. Therefore it is very important that you be aware of the rules and regulations in each state in which you practice.

The law makes physician-assisted suicide a legal medical option for terminally ill Oregonians. It requires that the Oregon Health Services (OHS) monitor compliance with the law, collect information about the patients and physicians who participate in legal physician-assisted suicide, and publish an annual statistical report.

There have been increases in the number of assisted-suicide deaths each year since 1998 (see Fig. 4), but the numbers remain relatively low, accounting for only 14 of every 10,000 deaths in the state.30

Figure 4: Physician-assisted Deaths in Oregon, 1998-2003

In order to participate, the Death With Dignity law requires that a person be:

  1. a resident of Oregon,
  2. capable of making and communicating health care decisions for him/herself,
  3. diagnosed with a terminal illness that will lead to death within six (6) months.

The attending physician is the person who has to decide if all those criteria are met. If so, the patient request must be made in writing for medication for the purpose of ending his or her life in a humane and dignified manner in accordance with ORS 127.800 to 127.897.31

The Oregon law cannot require a physician to participate in an assisted suicide, but it does require her/him to refer a patient requesting the service to a physician who will provide it.

In 1995, after the Death With Dignity Act passed but before it went into effect, the Center for Ethics in Health Care at the Oregon Health Sciences University in Portland conducted a survey of 2,761 Oregon physicians regarding physician-assisted suicide.32 The study showed that:

  • 73% believed that terminally ill persons have the right to suicide;
  • 66% believed that physician-assisted suicide is ethical;
  • 60% believed that physician-assisted suicide should be legal;
  • 46% would be willing to comply with a patient’s valid request;
  • 21% had been asked for a lethal prescription in the past year;
  • 7% had written a lethal prescription before Measure 16 passed.

At about the same time, another survey was conducted among 1,119 physicians in Michigan.33 The results were

  • 40% favored a law permitting physician-assisted suicide;
  • 52% said they would not participate in either voluntary euthanasia or assisted-suicide;
  • 13% said they might participate only in assisted suicide;
  • 22% said they might participate in both.

It is important to point out that there is a difference between physician-assisted suicide and voluntary euthanasia. Physician assisted suicide occurs when the physician writes the prescription, or fills the syringe, but the person takes the lethal medicine on her own. Voluntary euthanasia can either be a person refusing care and therefore dying, or allowing another person to administer the lethal medicine, or in some other way cause the person’s death.

The official American Medical Association (AMA) position, originally adopted in 199334 opposes physician-assisted suicide. In part because…

“Physician-assisted suicide is fundamentally incompatible with the physician’s role as a healer…”

Instead, the AMA recommends…

“…physicians must aggressively respond to the needs of the patients at the end of life. Patients should not be abandoned once it is determined that cure is impossible. Multidisciplinary interventions should be sought including specialty consultation, hospice care, pastoral support, family counseling and other modalities. Patients near the end of life must continue to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication.”

While the AMA and many other medical associations oppose physician-assisted suicide, in 1997 the American Medical Student Association, the country's largest organization for medical students, has shown public support for it.35

In the future, as the students move into medical practice and establish long-term relationships with patients and their families—and are actually faced with the possibility of a request for assisted suicide, it will be interesting to see if their opinions change.

Whether or not assisted suicide is ethical remains a matter of personal conscience. So far, no other states have passed laws similar to the Death With Dignity Act, though such laws are under consideration in other states. However, lack of legality does not always deter physicians in assisting patient suicide.

In April of 1998 the results of a survey conducted on the topic of physician-assisted suicide by Dr. Diane Meier of Mount Sinai School of Medicine in New York were published in the New England Journal of Medicine.36 The survey involved 1,902 doctors who practiced in the areas of medicine in which a request for assisted suicide would most likely be made. The survey found that:

  • 6.4% of respondents had helped at least one patient commit suicide. Of those;
    • 53% prepared a lethal injection, the rest wrote lethal prescriptions;
    • 29% said they had assisted because a patient was in severe pain;
    • 78% said they had assisted because the patient was in severe discomfort other than pain.

The response “…the patient was in severe discomfort other than pain” underscores an interesting fact reported after five full years of the Death With Dignity Act: fewer than 25% of patients who chose assisted suicide had done so because of inadequate pain control (see Fig. 537) The three primary reasons given were:

  1. Loss of autonomy
  2. Less able to engage in activities making life enjoyable
  3. Loss of dignity

This adds to the ethical quandary. If the argument in favor of assisted suicide is based on the premise that it is more humane to end a patient’s suffering than allow it to continue, does that suffering have to be caused by pain? If life isn’t any fun anymore, and/or the patient does not have freedom of movement, and/or must experience loss of dignity because of dependence on others, is the patient truly suffering? Is inconvenience and humiliation suffering? Or is it the patient’s caregivers who are suffering? And if that is it, does indeed the patient feel there is a duty to die? An excerpt from the report which provides in-depth information about patients who have participated in assisted suicide is included as Appendix J.

An interesting effect of the Death With Dignity Act was documented in an article entitled, “Oregon Physicians' Attitudes About and Experiences With End-of-Life Care,” which was published in the Journal of the American Medical Association (JAMA) in May of 2001.38 In February 1999 a questionnaire was mailed to almost 4,000 physicians in Oregon who were eligible to prescribe life-ending medication regarding what, if any, impact the Death With Dignity Act had on their clinical practice. About two-thirds of the physicians, 2,641, responded. The study indicated that of the respondents,

  • 30% reported that they had increased referrals to hospice.
  • 76% of those who cared for terminally ill patients reported that they made efforts to improve their knowledge of the use of pain medications for those patients.
  • 6% had been asked by a patient if they would be willing to prescribe a lethal medication.
  • 27% of those who said they would prescribe a legal injection were not confident they could determine when a patient had less than 6 months to live.

The study concluded that most Oregon physicians who care for terminally ill patients report that they have made efforts to improve their ability to care for dying patients in the five years since the Death With Dignity Act was first proposed in 1994.

ETHICAL CONSIDERATIONS IN PEDIATRIC PALLIATIVE CARE

Every year approximately 53,000 children die in the United States,39 many of whom would benefit from palliative care. End-of-life treatment for children requires the consent and involvement of parent or guardian, which creates an entirely new set of ethical questions:

  • How soon should the parent be informed that the physician believes the illness is terminal?
  • Should the child be told the illness is terminal?
  • Does the parent have the right to ask that extraordinary measures not be taken?
  • Should medication only be given to relieve pain, or should curative treatment also be continued?

The Texas Children’s Cancer Center has created an outstanding guide to the Goals of Pain Management in Terminally Ill Children 40 (see Fig. 6). In addition the AAP Policy Statement 41 offers an excellent reason for palliative care in children:

“The decision to forgo life-sustaining medical treatment does not necessarily imply an intent or choice to hasten the death of a child. Although a child's life may be shortened by forgoing burdensome interventions or providing adequate sedation in the face of otherwise unrelieved symptoms, the goal of palliative care is to optimize the quality of the child’s experience rather than hasten death. On occasion, the relief of severe, progressive symptoms such as pain or dyspnea may require a rapid escalation in the doses of administered analgesics and sedatives. If the child becomes obtunded and less responsive, parents and staff may feel that the medication is to blame, rather than the disease process a misunderstanding that is reinforced by referring to the procedure as ‘terminal sedation.’ The child’s progressive deterioration and death may be attributable to the disease process, and not the medication. Rarely, the relief of progressive symptoms may require deep sedation. Dying with dignity and without pain or distress is the primary goal.”

Figure 6: Goals of Pain Management in Terminally Ill Children

The entire AAP Policy Statement regarding Pediatric Palliative Care can be accessed at their Website, http://aappolicy.aappublications.org.

SUMMARY

It is impossible to separate one’s personal feelings from the ethical decisions one will make. That is true in every aspect of life. There is no absolute assignment of right and wrong as there is in legal considerations. Even the Hippocratic admonition to “Do no harm,” is open to interpretation. Is it harming a patient in a vegetative state to keep her alive when she has no hope of recovery? Or conversely, is it harming a patient who is in a vegetative state with no hope of recovery to help her die peacefully and painlessly? Ethically, is it better to err on the side of giving a dying patient too much pain medication and perhaps hasten death, or to risk not giving the patient enough and therefore not relieve her suffering?

There is an old saying that perhaps still provides the best advice, “Let your conscience be your guide.”

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