Medical Ethics and the Terminally Ill

We are familiar with the idea in the Hippocratic Oath all graduating medical students swear to, that,. At the very least, doctors will do no harm. Yet, what is rarely discussed is another part of this oath: "I will remember that I remain a member of society, with typical obligations to all my fellow human beings, those sound of mind and body as well as the infirm." Yet, the views of society toward death- whether assisted suicide, a DNLR order by a patient, or merely permitting a patient to expire to save additional pain and grievous suffering are discussions not only within our society, but within the court system as well.

Perhaps one should begin facing the dilemma proposed- eliminating two tube feedings, dehydration, and the withholding of other medical treatment from a dying patient- from the patient's side. "The right of the patient to direct his or her medical care and health outcome, known as patient autonomy, and the right of society to control and allocate 'limited resources', known as 'distributive justice', will certainly collide" (Guellec 1999 1).What Ms. Guellec describes in her essay is that the ethical and moral beliefs of society- especially the medical profession- has changed and is continuing to change. "According to Hiller (1986), six ethical principles are relevant for health care leaders. They are beneficence, non-malfeasance, respect for persons, justice, utility, and truth telling" (Guellec 1999 1). But, as she points out, this is all very theoretical and perhaps not the way the "real world"- patients and their families- see the need to keep a dying person alive, or, somehow, to withhold some medication or nutrition to permit a death with dignity.

"The moral principle of beneficence is one of the time-honoured ethical foundations of medical practice.....this involves using specialized medical knowledge to advise patients with regard to their health; that is, doctors are morally obligated to act for the good of their patients" (Rogers 1999 388). What this implies, in many cases of terminally ill patients, is that the doctor becomes "paternal"- that is, he has to make decisions for the patient (sometimes with or without family's knowledge or approval).

Death with dignity crosses ethical lines, from time to time. We have seen many cases- and not merely Dr. Kevorkian's- where terminally ill, suffering patients ask for a way out, to give them a last opportunity not to die in pain and agony. In some cases, doctors have over-medicated, perhaps given too-strong a sedative which induces a coma and eventual death without the patient's feeling anything. But, when a dying patient slips in and out of consciousness, what choice do doctors have for some sort of "informed consent" to stop nutrition, water, or other life-giving stimulants. "Should they wake her up, or should they make treatment decisions on her behalf?" (Elger & Chevrolet 2000 18). The principle of autonomy clearly dictates that the patient should be awakened to make his or her own decisions. But, as the authors state, waking up a sedated patient in order to inform him and request a decision causes significant physiological and psychological suffering (18). One also has to invoke the idea of patient competency. And, if the patient is incompetent, can or should the doctor ask for decisions from the immediate family? What the end result might well be considered by these family members is killing by withdrawing life-supporting activities, such as nutrition, or water, or sedatives.

From the medical profession's point of view, the ethical and moral dilemmas they often face are moving away from the traditional concept of always saving a life, if at all possible. "The prohibition of killing, it is said, does not entail that the physician must always preserve a life. While physicians must not intentionally cut short a patient's life, or engage in acts of euthanasia, they may sometimes, under the principle of double effect- act in ways that will foreseeably but non-intentionally cause death" (Kuhse 2002 271) .

Suppose this particular patient asks to die, what should the doctor do? "The British medical Association recently published guidelines from its ethics committee on decision making...'Although patients' wishes should always be discussed with them, the fact that a patient has requested a particular treatment does not mean it must always be provided.... A life-prolonging treatment may, for example, prolong life but result in severe pain or loss of function so that overall it produces severe harm to the patient" (Williams 2000 85).

What if a dying patient's family member requests that tube feeding be stopped? In one case cited in Family and CommunityHealth (Jan. 1999), the medical facility refused and the case went to court. Eventually, "the state Supreme Court ruled that removal of tube feeding was legally permissible when the patient had no chance for recovery, and the mother did indeed have the right to make this decision" (Seibold 1999 83). This case, and others with similar results, show that these "cases have shifted the balance of power in decision making away from doctors and toward patients and their families" (Stein 1999 12). In a way, this relieves doctors of having to make a fateful decision. This, of course, assumes that there are family members willing and able to make the decision. What a terrible dilemma for the doctor if the only competent family member(s) suggest that he make the decision.

Of course, in the cases where physicians are literally forced to make a moral, ethical, and ultimately medical decision, they then are faced with alternatives: dehydration, removal of tube-feeding, or over-sedation. "Nutrition and hydration have long been considered to be life-sustaining therapies that are associated with comfort and relief of suffering. This belief is largely based on our own experiences with the sensations of thirst and hunger, which have led physicians to question whether withdrawing or withholding nutritional support form a dying patient can be morally or ethically justified" (Winter 2000 723).

It would seem only rational to put aside the moral and ethical question, when the court has decided that a patient with no chance of survival, or, in some instances, a comatose patient with no brain function who has no chance of returning to consciousness, can be deprived of nutrition with the consent of a family member.

The UK now has a ruling on withholding nutrition: "In NHS Trust v. Bland (1993)....the House of Lords held it lawful for a doctor to withhold tube-delivered food and fluids from his patient in a persistent vegetative state...even though this would cause death by dehydration. The most controversial aspect of the case was the further ruling by three of their Lordships that it was lawful even though the doctor's purpose was not merely to withdraw what he regarded as 'futile medical treatment' but was precisely to kill the patient" (Keown 2001 53). Semantically, most doctors would stay away from using the phrase "kill a patient" However, by withholding water and nutrition, that is precisely what they are doing, or permitting to happen. Nevertheless, even as some courts decide in favor of removal of nutritive assistance, "in the early 1980s some commentators sought to differentiate among medical interventions and to exclude the withholding of artificial nutrition and hydration as a medical option" (Cantor 2001 183).

In many respects, the courts have taken over making decisions, case by case, with few precedents permitted to stand for long. However, what does a judge and jury really know and understand about both the inevitable pain and suffering of a dying patient, and the stress and suffering inflicted on the family of eventual survivors. "Starting in 1976, with the Quinlan case (she was a comatose young woman in a vegetative state with no hope of r4vocery, and her family fought over the right to have here dies without continuing artificial life support) courts and legislation have outlined the legal bounds governing medical conduct vis-à-vis the dying process'

(Cantor 2001 183). However, what is not clear, generally, is the difference between administering a lethal dose of sedatives and merely withdrawing life-giving nutritive or breathing sustenance. It is easy, on the one hand, to merely let nature take its course by removing artificial tubes, etc. It is another to administer a death-providing medication. For a family member who has the ultimate decision to make, it would be reasonable to ask which means is the most dignified and painless.

As Cantor (2001) puts it, there is the maximin rule to be considered, which means that when a doctor is faced with a decision where the states of the world are uncertain, then one should choose the option that avoids the worst possible scenario for the outcome. For the doctor, the decision on whether to dehydrate or remove feeding tubes can be determined by whether the patient feels pain and discomfort or does not. We therefore come back to the definition of "autonomy"- is the patient aware and capable of directing his medical treatment? Is there beneficence, finding the most dignified and pain-free means of escaping a harrowing existence? And, is there malfeasance, in that the doctor, after careful consideration of the options, took matters into his own hands to bring about a solution he (if no one else) finds suitable.

And yet, one must interject an economics rationale within the moral and ethical framework: "Where resources are limited, it is inevitable that some patients will not receive all of the treatment they request...Health professionals have am ethical duty to make the best use of the available facilities..." (Williams 2000 85). However, promising as this assumption seems, the realities are far different. Many for-profit hospitals attempt to move terminally ill patients who linger after their insurance has expired. Some hospital chains are even accused of deliberately inducing dehydration and starvation in order to cut costs, and make the room and/or bed available for an ill, but not terminally ill, patient. In other words, there are sure to be some hospital administrators who will acknowledge to their medical staffs: "We can't afford to let him (or her) hang on any longer". Death is a bottom line only for funeral directors and heirs.

One must therefore take all the sources, expert opinions both medical, judicial, political and personal, and come to a subjective conclusion about this particular dilemma. The many instances about both wanting to die and finding someone to help put terminal patients out of their misery should really begin at a time when the person is healthy. There is no better means of directing the healthcare-giver than with a living will- a document that plainly states, while the person is of sound mind- what he or she wants to be done. It doesn't mean that some doctor, fearing his own moral or ethical dilemma might not wish to carry out this autonomous desire to the letter. But, at least it provides him guidelines. Perhaps it is important to have more medical lawyers offer and prepare such autonomous living wills. It would be helpful, near one's end of life, to know when to remove feeding tubes- after missing one, or two feedings?, when to remove hydration, breathing apparatus, or other artificial means of sustaining an otherwise unsustainable life.

We know that physicians are not God, and often decline to act as His surrogate. However, given a point of no return, it would only be fair of a person to make an autonomous request- or bequest- about being allowed a dignified, pain-free death? The real dilemma is: "Does it make much of a difference...whether one causes or merely hastens death?" (Perkin 2002 164).

CITATIONS:

Allmark, P.: Death with dignity" London UK: Journal ofMedical Ethics, vol. 28, issue 4, pp 255-257, August, 2002

Cantor, N. L.: "25 Years after Quinlan: A review of the jurisprudence of death and dying" Boston MA: The Journal of Law,Medicine, and Ethics, vol. 29, issue 2, pp 182-196 Summer, 2001

Elger, B.S. and Chevrolet, J-C.: Beneficence today-or autonomy tomorrow?" Hastings-on-Hudson NY: The Hastings Center Report, vol. 30, issue 1, pp 18-19, Jan/Feb 2000

Guellec, D.: "Patient Autonomy vs. Distributive Justice

www.zmag.org/Zsustainers/Zdaily/1999-12/patient.htm

Keown, J.: Dehydration and human rights" London UK: Cambridge law Journal, vol. 60, issue 1, pp 53-56, March, 2001

Kuhse, H.: "The agony of trying to match sanctity of life and political-centered medical care" London UK: Journal ofMedical Ethics, vol. 28, issue 4, pp 270-272, Aug. 2000

Perkin, R. M.:: "The Agony of Agonal Respiration: Is the last gasp necessary?" London UK: The Journal of Medical Ethics, vol. 28, issue 3, pp 164-169, June, 2002

Rogers, W. A. "Beneficence in general practice" London UK: Journal of Medical Ethics, vol., 25, issue 5, pp 388-393, Oct. 1999

Seibold, E. S.: "Managing Death: The First Guide for Patients, Family Members and Care-Providers on Forgoing Treatment at the End of Life" Gaithersburg MD: Family andCommunity Health, vol. 21, issue 4, pp 83-83, Jan., 1999

Stein, C.: "Ending a Life..." Boston MA: Boston GLOBE, p. 12, March 14, 1999

Williams, A.: "Health Professionals have an ethical duty..." London UK: Journal of Medical Ethics, vol. 26, issue 2, pp 85-88, Apr. 2000

Winter, S. M.: Terminal nutrition: Framing the debate for the withdrawal of nutritional support to terminally mill patients" New York: The American Journal of Medicine, vol. 109, issue 9, pp 723-726, Dec. 15, 2000