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Medical Ethics

"Ethical Issues in Caring For Patients Near the End of Life"

Dr. Thomas R. McCormick   by Dr. Thomas R. McCormick
 
Dr. McCormick, a Senior Lecturer in Medical Ethics in the Department of Medical History and Ethics at the University of Washington School of Medicine, is on the National Advisory Panel for a Project on Death Education sponsored by Choice in Dying and funded by the Greenwall Foundation. This project involves a five-year study of death education in medical schools. The UW is one of ten participating medical schools evaluating current curriculum and advising on ways to enhance care of the dying patient through improving education. In what follows, Dr. McCormick explains basic medical ethical issues of importance to caregivers; cultural and historical perspectives on patients' rights; and current legal debates surrounding care for the dying. The original article was published in the Northwest Physician, Winter 1995.

Dr. McCormick answers the following questions:


Since death is the inevitable outcome of every human being's existence it seems reasonable to ask why there is now such a furor over the way we die? For the greatest proportion of human history death there was little that physicians could do to intervene at the end of life save to provide care and comfort and compassionate company to the patient and his or her family. With the rise of scientific medicine and the development of highly skilled professionals, we have achieved new heights in prolonging life and intervening in situations that formerly led to death. On one hand our society appears to have an insatiable thirst for medical intervention designed to prolong life such as coronary artery by-pass surgery, clot busters, organ transplants, or high dose chemotherapy accompanied by autologous bone marrow transplant. On the other hand some citizens are demanding physician assisted suicide or outright active euthanasia growing from a fear of a fate many consider worse than death: living with pain, loss of function, either physical or mental, suffering the indignity of dependence upon others, or lingering with one or more of these conditions, unable to fully live, nor to fully die. All of this is taking place in a larger cultural context driven by tremendous pressure to contain health care costs, to limit expenditures through "managed care," and to reduce medical benefits to the indigent and elderly through capping Medicaid and Medicare. Although no current consensus may yet exist about the solution to these issues, nevertheless, both ethical and legal guidelines have been developed to guide us in the face of difficult conflicts.

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In the age of pre-scientific medicine physicians had limited ability to cure their patients. Nonetheless, through careful clinical observation they were often able to diagnose the onset of a fatal illness and formulate a prognosis. The ethical question was whether or not to tell patients the unhappy news that they suffered an incurable illness when there was no medical benefit that could be offered. Hippocrates and his followers felt that if the physician could not "help" the patient, then the physician should not "harm" the patient by disclosing information most likely to lead to discouragement and depression while the disease lead inexorably toward death.

Medical historians now claim that it was not until about 1935 that patients had at least a 50-50 chance of improving their condition by way of a visit to their physician. (Whorton, 1995) World War II marked a major turning point in medicine with the discovery of antibiotics and the rapid improvement of our pharmaceuticals, diagnostic devices, surgical procedures, and medical interventions employed in the care of those wounded in military service. Following the end of the war, the Nuremberg Trials led to the disclosure of atrocities committed by the Third Reich as non-Germans, Jews and prisoners of war were used without consent and against their will in human experimentation, often accompanied by pain, disfigurement and death. Following WW II we witnessed the rise of individualism, liberty interests, and the waxing of the principle of "patient autonomy." People wanted a stronger voice in determining the nature of their medical care and "informed consent" became a liberty right in both ethics and law. Informed consent became a requirement in all human experimentation and institutional review boards came into existence to review every experimental protocol. Informed consent became a keystone in clinical practice and standards were elevated from "the community practice standard" to the "reasonable person standard," following important decisions in court supporting patient rights to informed and voluntary consent. (In Washington State law, requirements for informed consent are described in RCW 7.70.030.)

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As recently as the 1960's most (90%) physicians in the US reported that they did not disclose a diagnosis of a terminal illness, particularly cancer, to patients. (Oken, 1961) This practice was challenged in a variety of ways. Dr. Elizabeth Kubler-Ross claimed that cancer patients with whom she consulted at Billings Memorial Hospital in Chicago were relieved when she was willing to speak openly and candidly with them about the seriousness of their condition and to inquire about their feelings as death approached (Kubler-Ross, 1969). As new techniques and medications became available to forestall death from cancer and heart disease, for example, the consent requirement necessitated informing the patient and encouraging the patient in the acceptance of the recommended treatment modalities. By the end of the decade of the 70's the situation had reversed with over 90% of physicians informing their patients of a fatal illness. (Novack, 1979)

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The United States is notably different from countries such as Japan and Italy where physicians remain reticent to disclose the diagnosis of a life-threatening illness, particularly, cancer. In my discussions with physicians in Italy they often claimed their principal duty was to determine which (if any) family member was best suited to handle the bad news of a fatal prognosis (McCormick,1995). In practice this person often turned out to be the male head of the household, or if he were the patient, a brother, or possibly the oldest son or daughter. Colleagues in Japan (Akabayashi, Sirahama, Kimoura) report that a similar practice occurs in Japan, patients are usually spared the bad news of a fatal prognosis. There, the cultural context promotes a special relationship between the physician and patient in which the physician acts with jin, (loving kindness) toward the patient and the patient in return responds with respect and obedience to the recommendations of the physician.

Minority groups in the US usually prefer interactions with physicians that respect their particular beliefs and value system. The Navaho, for example, believe that the spoken word can bring into reality that which it describes or predicts. (Carese, 1995) Therefore, traditional Navaho do not want to hear that they have a terminal illness, nor do they want to hear the untoward side effects of medication, nor do they wish to be present at the moment of death. Providing competent medical care while remaining respectful of the value system of the patient is increasingly a challenge in the face of growing cultural diversity in this country. End of life issues, though inevitable for everyone, are given differing meanings and assigned differing values by our various family and cultural systems.

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The case of Karen Ann Quinlan forced a new look at old practices in medicine. In April, 1975, Karen lapsed into unconsciousness and stopped breathing, possibly due to an interaction between alcohol and a small amount of Valium that she had ingested. CPR was administered, but due to this episode of anoxia, she never regained consciousness and remained in a persistent vegetative state. When it became clear through neurological consultation that there was no reasonable hope that Karen would ever regain consciousness, her parents chose to remove her respirator and allow her to "die with dignity." Her parents' decision aroused a storm of controversy. Her father was eventually made her guardian and the New Jersey Supreme Court found on January 26, 1976 under the right to privacy that Mr. Quinlan could decide on her behalf the nature and extent of her medical treatment, including the right to discontinue the respirator, even if it resulted in her death. Eventually, Karen was weaned from the respirator and her body was sustained through high-nutrient feedings, antibiotics and good skin care. She lived in a vegetative state for ten years and died on June 11, 1985.

The Quinlan case was prominently featured in the national news, arousing the fears of many that their bodies might be kept alive even though they had irreversibly lost consciousness and sentience. These fears fueled the fires for California's Natural Death Act in August, 1977. Washington State followed with the passage of a similar bill in 1979.

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Ethical concerns for appropriate treatment at the end of life also stimulated legislation intended to secure the right of informed consent, or in this case "informed refusal" of treatment for patients suffering mental impairment leaving them incapable of competent decision making. So called "Living Wills" had existed for years, but these were informal documents offering moral persuasion to others concerning the patient's desires. Washington's Natural Death Act allowed patients who were terminally ill and over the age of 18 to write a directive instructing their care givers not to prolong their dying and to forego or remove life sustaining treatment, should they lose the capacity to direct their care as death drew near. This directive was a legal document, effectively signifying the patient's wishes when properly witnessed and entered into the chart.

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Following California and Washington, many of the states passed similar legislation. Many individuals were pleased to have the right to a legal living will, but few exercised the option. Over a decade after Washington's Natural Death Act passed, fewer than ten percent actually possessed a directive. Senators Danforth and Moynihan sponsored the Patient Self-Determination Act and added it to the budget omnibus bill to go into effect December 1, 1991. In essence this bill required any health care facility receiving federal funds to implement a policy designed to notify patients upon admission to hospital, nursing home or other health care facilities about relevant state laws and the rights of citizens of that state to refuse or discontinue treatment. Admitting departments were also instructed to record whether or not entering patients had a written "advance directive," provide information and support in securing one if so desired, and institutions were directed to provide community education so that informed citizens could make educated choices regarding health care institutions with foreknowledge of their policies.

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The pendulum swung still further in the direction of patient self-determination in Washington State with the passage of SB 1481. The legislature revised Washington's Natural Death Act, effective June 11, 1992 in RCW 70.122.030. As amended, adult persons can execute a directive ordering the withholding or withdrawal of life sustaining treatment in a terminal condition or permanent unconscious condition. The law was further amended to allow individuals to choose to accept or to reject artificially provided nutrition and hydration. Prior to withholding or withdrawing life-sustaining treatment, the attending must enter the diagnosis of a terminal illness into the chart, or the diagnosis of a permanent loss of consciousness must be confirmed by two physicians and entered into the patient's records. If appropriate steps are followed and properly witnessed the directive shall stand as the final expression of a patient's legal right to refuse. Any surrogate decision-maker or person holding Durable Power of Attorney for Health Care is instructed to follow the patient's written directive.

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Since there had been controversy over the ethical and legal standing of surrogate decision makers for patients who had lost decision making capacity, a hierarchy of decision makers was established under law in RCW 7.70.065 with the following classes taking priority:

  1. guardian with authority for health care decisions
  2. person holding Durable Power of Attorney for health care decisions
  3. spouse
  4. adult children
  5. parents
  6. adult brothers and sisters

If there are two or more persons in any class, their decision must be unanimous.

Any surrogate providing consent must determine in good faith that the patient, if competent, would consent to the proposed care, or if this is unknown, it must be determined that the proposed health care is in the patient's best interests.

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Individuals whose surviving family members may be inaccessible or whose family members may oppose the judgment of that individual may choose to execute a Durable Power of Attorney for Health Care. An agent holding this power supersedes all family members except one holding legal guardianship. RCW 11.94.010

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Patients, then, clearly have both an ethical and legal right to forego life-sustaining treatment, including the use of cardiopulmonary resuscitation (CPR). The competent patient suffering a terminal illness may simply request the attending physician to enter a Do Not Attempt Resuscitation (DNAR) order into the chart. The patient may also provide an advance directive and request that it be entered into the chart, or instruct appropriate surrogates that they wish to forego CPR.

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In some cases, the attending physician may determine that attempting CPR would be a futile process with no reasonable hope for prolonging life or attaining the patient's goals. Many health care institutions are already formulating policies clarifying guidelines for withholding or withdrawing therapies considered futile. (Jecker, 1995) When the attending determines that CPR would be "futile", the No CPR order must be entered into the patients chart and should discuss the DNAR order with the patient, family or surrogate in a reasonable, compassionate and timely manner.

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One particularly vexing ethical problem in the past has arisen in cases where the death of a patient was expected, or even possibly welcomed, due to a terminal illness, yet at the moment of death someone in the household dialed 911 and emergency medical personnel were sent to the scene. In such cases, in the past, there had been in effect an "emergency ethic" policy that required EMS personnel to begin CPR, stabilize and transport the patient. This general policy proved inadequate for those cases in particular where patients did not want CPR.

The Department of Health developed guidelines for the EMS-No CPR Program in September, 1993. Emergency personnel will now honor the special bracelet containing a "No CPR" form for qualified patients who are either terminally ill or in a permanent unconscious condition. It is expected that these guidelines may change in the near future to allow the bracelet to be worn by persons holding an advance directive, even though they may not currently be in a terminal condition.

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In 1988 California voters turned down an effort to place a voluntary euthanasia proposal on the ballot. The "Humane and Dignified Death Act" would have allowed terminally ill patients to authorize physicians to assist them in dying by "any medical procedure that will terminate the life . . . swiftly, painlessly, and humanely."

In Washington State, Initiative 119 was defeated by a vote of 54% against and 46 % in favor of a similar proposition that would have legally authorized physicians in directly hastening the death of patients who voluntarily made such a request.

On November 8, 1994 in Oregon, Measure 16, "Written Request for Medication to End One's Life in a Humane and Dignified Manner" was the first such measure authorizing physician assisted suicide to pass in any state. It passed by a narrow margin of 51 to 49 percent of those voting. This measure allows physicians to prescribe lethal drugs for terminally ill patients under certain conditions:

  1. A primary care attending and a consulting physician must agree that the patient has six months or less to live.
  2. The patient must make two oral requests (at least 48 hours apart) for drugs to use to terminate his or her life.
  3. The patient must wait at least fifteen days after the initial oral request, then make a written request to the physician, after which an additional 48 hours must elapse before the prescription can be filled.
  4. If either physician thinks the patient has a mental disorder or is suffering from impaired judgment from depression, they must recommend the patient for counseling.
  5. The patient can terminate the request at any time during the process.

This law limited the activity of the physician to only providing the death inducing medication and indicting the manner in which it can be used/. It was challenged in court and the challenge was sustained. It is currently under review by the Ninth Circuit Court of Appeals. (this law has now cleared all court challenges and is accepted as law in Oregon.)

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In a Federal Court in Seattle, Judge Barbara Rothstein overturned a state law proscribing any assistance in aiding or abetting a suicide in a case brought on behalf of three terminally ill patients who wanted physician assisted suicide by a group called Compassionate Friends. This case was heard on appeal by the Ninth Circuit Court in San Francisco by a panel of three judges whose majority report overturned Judge Rothstein's earlier decision. It was recently announced that the full panel of judges would hear the case but their decision has not yet been rendered. Either way the decision goes, it is most likely that the case will end up on appeal in the Unites States Supreme Court. (The US Supreme Court subsequently upheld Washington State's law proscribing physician-assisted suicide.)

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In January 1995, Senate Bill 5596, "The Terminally Ill Patient Act of 1995," was introduced in Olympia and is currently up for discussion. It is, for all practical purposes, similar to the Oregon law in that it would allow physician assisted suicide only to the extent that physicians could provide a lethal medication and instructions for its use for qualified, terminally ill patients. Qualified patients must be mentally competent adults eighteen years of age or older diagnosed with a terminal condition where death is expected within a reasonable period of time and the application of life-sustaining treatment serves only to prolong the process of dying. Patients under this measure would be entitled to make a written, revocable, request for aid in dying, signed by two qualified witnesses. Only physicians are authorized to provide aid in dying. Physicians, however, may decline to provide aid in dying and privately owned health care facilities are not required to permit aid in dying within those facilities. However, any physician or facility declining to provide aid in dying is required to transfer the patient to the care of another physician and/or facility to enable the patient to receive aid in dying as soon as reasonably possible. We do not know if this measure will pass, it has strong advocates and strong opponents. (Subsequently, this bill did not pass the legislature)

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Having observed the evolving development of public policies surrounding the care of patients at the end of life, the passage of Measure 16 in Oregon, and the current support for Senate Bill 5596 in Washington State, it is not unreasonable to expect that eventually some form of physician assisted suicide may be granted legal status. If that occurs, physicians will be faced with a host of new ethical decisions in the care of dying patients.

Experience has shown that by far the majority of terminally ill patients who consider suicide do not actually kill themselves. Hopefully, if patients speak of suicide or ask their physician to assist them in dying, the first consideration of the physician should be to discover the patients concerns and to resolve them. The relief of symptoms and the reassurance of good comfort care may obviate the patient's interest in suicide.

Nonetheless, some patients may persist in requesting physician assistance in suicide. In the past, regardless of whether physicians were for or against assisted suicide, all could plead that regardless of their own sentiments, the act was unlawful. If the law should change, all must be prepared to disclose their professional position on assisted suicide. Regardless of the law, some physicians will continue to find a moral duty not to participate in assisted suicide, and may also find it morally repugnant to be required to refer such patients to others who would reasonably be expected to assist the patient. Others may find it morally acceptable to provide assisted suicide, but for whom? For established patients only? For new patients? For patients who cannot afford hospice care? For homeless patients who are uninsured? Other health care professionals will inevitably be involved. How can the pharmacist reconcile his or her ethical convictions in filling a prescription if doing so is contrary to perceived ethical duty? What of the visiting home nurse, if he or she is opposed to assisted suicide, is assistance implied by being present when a patient suicides, or would one be abandoning a patient by choosing not to be present when so requested?

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Our relatively recent successes in keeping patients alive or in providing resuscitation in the face of cardiac or respiratory arrest has led to a fear held by many that medicine may keep them or their loved ones alive too long. Many fear pain and suffering at the end of life and it is clear that in times past we have not always provided competent and adequate comfort care. Others express apprehension and anxiety about losses that might accompany dying, loss of bodily functions, loss of independence or the loss of mental capacity while the body lives on. In many such cases, we have not effectively sorted out the medical issues from the psychosocial issues. These distinctions must be carefully made lest we mistakenly attempt to provide a medical solution for issues that might more appropriately have psychosocial or spiritual solutions.

In Washington State, we have come a long way in supporting the right of patient's to forego or withhold life-sustaining treatment. We have developed the hospice concept in the care of terminally ill patients wherein pain control and comfort measures are given top priority so that persons can live as fully as possible until they die. We have excellent pharmacological means to relieve pain and recent pain initiatives have fostered continuing education for physicians and nurses to enable competent and thorough pain relief. In those somewhat rare cases where pain is intractable we can medicate patients into analgesic slumber so that they do not suffer terminal agitation or anguish, guided by the principle of double effect, where our aim is to comfort and care for the patient at the end of life, not to end the life of the patient. Efforts are underway in both medical schools and residency programs to enhance the education of physicians-in-training in the care of dying patients.

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It is the hope of this author that by carefully attending to the needs of dying patients and by improving both the art and the science of comfort-care, we will reduce the fear and anxiety which now seems to be driving toward the direction of physician assisted suicide.

I argue against changing our social policies so as to legalize euthanasia or physician assisted suicide. As described above, we have many resources to aid and comfort those who are dying, including the commitment of the health care professions to care for and sustain those who suffer. Reversing our social policies on these issues would add a significant new duty for physicians, not only the duty to support life and relieve pain, but a new duty to also end the life of patients. I am concerned also with the social context for the current push for euthanasia and physician assisted suicide. We are clearly into the age of cost containment and managed care. We are witnesses to a growing cadre of aging citizens and the baby boomers will shortly be headed into their retirement years. Perhaps prescribing and providing a lethal drug is the most efficient and inexpensive way to treat dying patients. I worry that this is a slippery slope. Dr. Carlos Gomez reports that the Netherlands have slipped in clinical practice away from their starting point, from under-reporting to euthanizing patients who were clearly not competent to request it. Perhaps this is the time and the place to recognize a limit to individual autonomy in respect for communitarian values and in protection of the many vulnerable among us.

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