Life and Death Decisions: Psychological and Ethical Considerations in End-of-Life Care

What are the imperatives that spur us on to question whether to play a role in prolonging life or affirmatively terminating it? In A Shropshire Lad, A.E. Houseman wrote,

Currently, we leave the end-of-life decision to personal autonomy.

Kleespies’ discriminating discourse deals mainly with the terminally ill, most of whom he sees as suffering from debilitating illnesses that “corrode the human spirit,” and he ponders some values of curative efforts despite the “futility of the situation.” By exploring life-and-death decisions about the dying process, the book hopes to prompt psychologists, with their skill in conflict management, to become important members of the consultation team and not be “locked out” of the team of “core hospice service providers.” The psychologists would then become more visible “among the disciplines involved in end-of-life care…about hastening death, assisted suicide, futility of treatment, and the rationing of scarce medical resources.” But there are substantial informational and ethical weaknesses in the book, which could blunt its value for the very audience it hopes to reach, since only the medical profession is in a position to provide palliative care to those dying in pain.

There is no mention in this book of the major national initiatives such as the American Medical Association’s Education for Physicians on End-of-Life Care project in 1999, the Open Society Institute’s Project on Death in America (11 publications in a series on palliative care), and the Robert Wood Johnson Foundation’s enormous Last Rites Campaign to improve the quality of end-of-life care. (Last Acts [www.lastacts.org] is a national program to improve care and caring near the end of life. This is a multifaceted campaign to raise awareness of palliative care and encourage improvement in its delivery, with 700 national and local professional organizations.)

Since there are few studies on the quality of end-of-life care from the patient’s perspective, the book’s review of the procedures available to serve a dying person’s wish to continue to live is meager. Resolving conflicts when the patient wishes to live rather than die is even more medically complex, and psychologists’ training limitations become more evident, because it requires both a comprehensive knowledge of the medical palliation of pain and an understanding of the body’s natural ability to palliate itself. Without having an in-depth database for an understanding of the underlying mechanisms, the psychologist is not in a position to answer questions about bodily changes or disfigurements that may occur in end-of-life care, which can be a disservice to the counselor and, ultimately, to a patient’s family. By proposing to insert the nonphysician into the life-or-death decision-making process at this point, the author emphasizes psychologists’ greater participation in what are inevitably medical procedures that may end life.

In the chapter on ethical issues, the author offers three elements of informed consent—information, voluntariness, and competency—and an analysis of four standards that courts tend to use. These standards are 1) the ability to express a choice, 2) the ability to understand information relevant to the decision about treatment, 3) the ability to appreciate the significance of the information disclosed for one’s illness and possible treatment, and 4) the ability to reason with relevant information in order to engage in a logical process for weighing treatment options (1).

Patients cannot be assumed to “know” of the relative imminence of death, yet, in such dire straits, they must be offered an opportunity to either accept or decline this knowledge without feeling that they may incur the doctor’s disapproval, i.e., being coerced by the trust relationship or other emotions. This is what may be called a “pro-offered” procedure—the “consent” part of informed consent—that is the basis of modern autonomy theory (2). To deny someone the opportunity to accept or reject knowledge regarding a medical treatment, even with the intent of benefitting him or her, is to erode self-determination—what many courts have considered a battery (Black’s Law Dictionary, 7th ed., p. 991). The informed consent standards, however, offer only a negative right or liberty to refuse or accept an intervention and bypass an affirmative offering of a positive right to be given information.

The author also names four exceptions to informed consent, which are arguably applicable more to acute trauma centers and emergency rooms than to decision making by the chronically and terminally ill. The first and second exceptions, coma and legal incompetence, appear self-evident. The third exception, however, “when a patient waives his or her right to be fully informed,” is materially wrong and violates autonomy theory—the ability to choose. (I believe that by “the ability to make a choice,” Grisso and Appelbaum [1] meant to establish a low threshold for competency. Since those with certain obsessional problems routinely have difficulty in making choices, there is no intimation that it should be considered as an indication of informed consent per se.) Even if a patient refuses to receive “full” knowledge of the situation, there is neither enough to assume waiver of liberty nor evidence of futility regarding his or her treatment. Since without knowledge of the relevant facts there can be no waiver, there is no waiver by “refusal to know” (Black’s Law Dictionary, 7th ed., p. 1574). The fourth exception, “therapeutic privilege,” is admittedly paternalistic and rarely condoned. All in all, these are not exceptions to informed consent, since in each of the above-mentioned states, a surrogate would inevitably be appointed to actualize the informed consent.

In chapter 3, subheaded “The Struggle to Decide,” the author misconstrues “terminal sedation” as high doses of analgesia maintained “until the patient dies.” This truncated definition is in contrast to the AMA position:

The latter invokes what is generally accepted as the “double effect,” attributed to St. Thomas Aquinas: 1) the action itself must not be intrinsically wrong; it must be a good or neutral act; 2) only the good effect must be intended, not the bad effect, even though it is foreseen; 3) the bad effect must not be the means of the good effect; 4) the good effect must outweigh the evil that is permitted.

In chapter 4, “Assisted Suicide and Euthanasia,” the book reviews the ethical debate but comes down on the side of the “beneficent” or “nonmaleficent” “respect” of assisted suicide being decided on an individual basis by a physician, when so inclined. The author gives the example of Dr. Timothy Quill, although he notes that Quill “potentially broke a New York State law…and lied to the medical examiner about the cause of death.” The Second Circuit Court of Appeals, in upholding assisted suicide in the New York case Quill v. Vacco, accepted Dr. Quill’s argument:

This opinion was later reversed unanimously by the U.S. Supreme Court. New York’s Attorney General Dennis Vacco noted at the time, “The mainstreaming of physician-assisted suicide will pose unacceptable risks to untold numbers of our citizens, especially the most vulnerable, the weak, the poor and the very old” (personal communication, June 14, 1996). Law professor Yale Kamisar stated, “If assisted suicide went through, we’d be providing more safeguards for criminals picked up on the street than we would for the terminally ill” (3).

To the extent that a person in “need of dying” hires a physician to perform, through “expertise,” those services necessary for predictable completion of the death act (what Dr. Quill termed “irreversible treatment”), we must ask whether a doctor-patient relationship has been created. If not, why is a licensed physician called on in the first place? If so, has not the physician fraudulently represented a medical posture by concealing that he or she has only an inclination to perform the service and not a general duty? Once such an “individual” service could be universally practiced, it would cease to exist as an individually based decision and would establish an unhelpful universal, which, as the philosopher Kant says, would undo itself by exchanging an inclination for a duty:

On the issue of getting “informed consent” in the face of the “futility of the situation,” the author makes no mention of the important work by Martin Seligman, a former president of the American Psychological Association, among others. In 1975, Seligman published a monograph explaining that when exposed to uncontrollable negative events, animals and humans show a variety of motivational, cognitive, and emotional changes, the effects of which came to be termed “learned helplessness” (4). In 1996, with seven other authors, he declared,

Note that the researchers were examining the human response to what is considered futile and the cognitive impairments that result from it, not the futility of the situation as seen by others. These and more recent relevant studies show that, today, there is much more to the evaluation of competent civil decision-making than even traditional psychiatric mental status examinations could offer, especially as to what constitutes cognitive impairment that may be due to helplessness. The finding of demonstrable changes in brain activity—passivity, sadness, frustration, and cognitive slowing—requires us to revisit the criteria our professions and our society use to determine what constitutes informed consent when one is faced with the enormity of dying. (For example, in trauma cases, except for hysterical states, informed consent is established more often on the expectation of recovery than the expectation of death.)

Conflating “futility” for the patient’s survival with that of futile “treatment,” without distinguishing the difference, creates another void in this work, but the author consigns its resolution to the final chapter, “Concluding Thoughts”:

Unquestionably, the aim of suggesting a role for psychologists on the end-of-life stage is commendable, and they should have a prominent place in hospices and ethics committees. But the book’s exegesis on terminal states, using terms such as “terminal sedation” and “terminal dehydration” for what may occur from withholding or withdrawing treatment, as if they are actual treatments, is unavailing. This book’s exploration of having psychologists participate in making life-and-death decisions is spread too broadly over fields outside of the social contract contemplated by a dying medical patient. The psychologists’ help to dying patients and their families should be mainly in the realm of comforting.

Who should be at the interface helping with life-and-death decisions? Certainly not psychiatrists, who may have lost much of the database of human clinical physiology by the lack of emphasis on psychotherapy and overemphasis on psychopharmacology in their training. Possibly surgeons, pressured by managed care to maintain income by “volume,” or maybe oncologists, often insulated from the social scene by the microscope. Indeed, everyone in the health care professions—physicians, nurses, psychologists, or social workers—must realize that in end-of-life care, first, one must do no harm; second, there must be the recognition of the positive right of all patients to self-determination—even if competent patients are making choices that appear contrary to their own good—and only third, if at all, comes “beneficence,” the caregivers’ belief in doing good.

So long as the patient or surrogate can declare a need or desire for life; so long as physical and emotional comfort can be maintained by competent providers; so long as the “dying” human brain can continue to impart positive messages to loved ones—possibly even to continue to contribute to “state interests”—personal autonomy in the maintenance of life should remain a sacred goal (6).