End of Life Issues Guide: Decision Making by Patients

Advance Directives: Imperfect Guides

The new federal “Patient Self-Determination Act,” which became effective December 1, has given new impetus to medical decision-making by way of “advance directives” such as living wills. But a new study in the Journal of the American Medical Association suggests that such documents may be very imperfect guides to patients’ actual wishes.

The study involved 150 mentally competent dialysis patients. All were asked whether they would want dialysis continued or stopped if they developed advanced Alzheimer’s disease; they split about evenly on this question.

The subjects were then asked how much leeway they would want their physicians and surrogates to have in overriding that advance directive if they felt this would be in the patient’s best interests. Answers varied from “no leeway” (39%) and “a little leeway” (19%) to “a lot of leeway” (11%) and “complete leeway” (31%). Answers also varied widely as to how much weight should be given to various factors (pain or suffering, quality of life, etc.) in making such decisions. Even among the 30 subjects who had signed written advance directives before the study began, 40% “did not want advance directives followed strictly” in this scenario.

The researchers conclude that “following all advance directives strictly may not reflect patient preferences,” and “may not always serve the best interests of incompetent patients.” [Sehgal, Gaibraith et al., “How Strictly Do Dialysis Patients Want Their Advance Directives Followed?”, 267 JAMA 59-63 (January 1, 1992)

This caution seems to have special force regarding advance directives proposed by the Hemlock Society, which would formalize a request for euthanasia. Life at Risk, January, 1992

Advance Directives: No Cure-All

With enactment of the federal Patient Self-Determination Act (PSDA) in 1990, American lawmakers seem to have given their final endorsement to the concept of advance directives for treatment decisions. The act requires hospitals and other health facilities receiving federal funds to inform all patients upon admission of their right under state law to make such decisions Most states authorize the exercise of these rights through execution of a directive designed to take effect if and when the patient becomes incompetent. Some directives take the form of a “living will,” specifying action to be taken by physicians upon diagnosis of an irreversible terminal condition; others provide for appointment of a “health care proxy” or “health care surrogate” to make decisions when the patient can no longer do so. PSDA’s supporters hoped that abuses and uncertainties in the care of dying patients would be reduced by wider use of such documents.

But criticism of the documents seems to have grown within the medical community in the past two years. Critics say the directives are often ignored or found not to be helpful; or they work all too well, leading physicians to withdraw even treatment that patients would have wanted [see Insight on the News, 1/31/93].

In one recent study, 126 competent residents of a nursing home were interviewed at length on their treatment preferences and helped by experts to prepare advance directives. Despite this ideal preparation, patients’ wishes were ignored in practice 25% of the time: In 6 cases they received treatment they had refused, and in 18 cases they were denied life support that they requested [New England J. of Medicine, 3/28/91].

Another study found that patients’ own expressed wishes play little role in surrogate decision makers’ choices once the patients become incompetent. Family members of severely demented nursing home patients were asked about five hypothetical situations requiring decisions about hospital-level care. Only 3% of the surrogates said their decisions in these cases were based solely on past statements or comments by the patient; nearly 70% said their decisions were independent of any previous statements or comments (if any) made by the patient” [Archives of Internal Medicine, Sept. 1992].

Dr. Erich Loewy of the University of Illinois has warned that while the PSDA and advance directives can help protect patients’ rights, they “may be used by institutions and physicians to distance themselves all too easily from a particular patient’s particular situation by taking refuge in a generic rule.” While it is good to abandon the rule that doctors make all the serious decisions, “medicine does not want to throw out the baby of genuine and ethical caring with the bath water of physician paternalism” [Archives of Internal Medicine, Oct. 1992]. Similarly, a nursing home management magazine has asked whether the PSDA has sufficient “safeguards … to prevent a resident from being cajoled or coerced, however subtly, into executing an advance directive that is in the interest of the facility rather than reflective of the resident’s wishes” [Provider, June 1992].

The clinical ethicist at an Illinois hospital reacted to a very favorable journal article on health care surrogate laws by recounting two “striking experiences” of his own. In one case, medical staff were ready to follow a surrogate’s request to discontinue a ventilator, but were prevented from doing so by a sudden improvement in the patient’s mental status; the patient was ultimately weaned from the ventilator and regained the ability to communicate. In another case, a surrogate’s demand to discontinue a ventilator was thwarted only because the patient regained the ability to make decisions once his sedation was reduced; he angrily contradicted the surrogate’s decision. “Health care surrogate laws may have many valid applications,” said the physician, “but they also help create a permissive legal atmosphere. Physicians may encounter considerable pressure from surrogates to terminate life support for patients with terminal illness or diminished quality of life.” The authors of the article replied: “We hope that this is the case” [New England J. of Medicine, 4/22/93]. Life at Risk, April, 1993

“Will to Live”: Advance Directives to Request Treatment

Fifteen years ago, the “living will” was first promoted as a way to “opt out” of the aggressive life support that terminally ill people might otherwise receive from their physicians. Some organizations now believe that the opposite is needed: A “will to live” or other advance directive by which a patient can demand a certain level of medical treatment Several social and legal trends have created this need:

Public funding policies used to reward hospitals for over treatment, by reimbursing them for whatever treatment they felt was needed; now DRCs (“diagnosis-related groupings”) and other policies reward under treatment of some patients, by establishing a ceiling on how much will be reimbursed for patients with given conditions.

Promotion of “living wills” as a method of cost control used to be seen as deeply offensive; now economists calmly observe that a new federal law designed to encourage use of the living will “should, if properly used, be a potent force for cost control” [Jane Bryant Quinn, “Patient-choice law can help control costs, Baltimore Sun, 3/10/92]

Patients used to fear, with some justification, that they would be over treated when terminally ill; now court cases involving patients like Helga Wanglie in Minnesota raise the specter that physicians may withdraw life support against patients’ and families’ wishes, using their own “quality of life” criteria.

Despite these trends, many advance directives for health care are still designed solely or chiefly to facilitate the refusal of treatment. For those who choose in favor of life-sustaining treatment, documents are now available from several organizations.

The International Anti-Euthanasia Task Force has developed a “protective Medical Decisions Document” (PMDD) which combines specific “Instructions for My Health Care” and provisions for appointing an agent to implement these instructions. Physicians are asked to provide “medical treatment appropriate to my condition which offers a reasonable hope of benefit,” are asked to provide “food and water” unless they are ineffective in sustaining life, and are forbidden to perform any “action or omission which of itself or by intent causes death.,’ A PMDD set (including 3 copies of the document and one set of instructions) costs $4; bulk discounts available. IAETF, University of Steubenville, Steubenville, OH 43952.

Several groups and individuals opposed to euthanasia, working together as the Ad Hoc Committee of Americans for the protection of the Sick, Disabled and Elderly, have prepared a “patient Self-protection Document” which also combines specific instructions and provisions for appointing a proxy. Physicians are told that “nothing should be done which will directly cause my death, nor should anything be omitted when such omission would be the direct and primary cause of my death.” Instructions on food and fluids are similar to those in IAETF’s document Copies are available from: Illinois Right to Life Committee, 343 5. Dearborn, Suite 2l7, Chicago, IL 60604; Center for the Rights of the Terminally Ill, P.O. Box 54246, Hurst, TX 76054. Life at Risk, May, 1992

Patient Autonomy and “Futile” Treatment “Major savings can be realized by eliminating futile care and limiting unneeded care or ‘medicine at the margins’ …. I believe the medical staff of every hospital in America should define futile care in their environment and develop guidelines or parameters about how to identify it and eliminate it.”

With these words Dr. George Lundberg, editor of the Journal of the American Medical Association, announced one of his criteria for a health care reform plan combining improved coverage with cost control [JAMA, 5/19/93]. Lundberg urged establishment of “futile care policies” in 90% of U.S. hospitals by 1996, saying that “certainly tens and probably scores of billions of dollars annually could be saved.”

His editorial received a prompt reaction from the National Right to Life Committee. NRLC state legislative director Burke Balch, Esq. said that while health care may be futile if it is “ineffective in preserving life or aiding health,” some definitions of ‘futile care’ could be used as “a means of involuntary euthanasia” for helpless patients. “Too many so-called ethicists and doctors are calling care ‘futile’ that would preserve a life the patient wants, but with ‘quality of life’ which the provider — or some government bureaucrat — thinks is too poor.” NRLC executive director David O’Steen said his group will scrutinize President Clinton’s health care plan to ensure that it does not endorse such policies “in a rush to reduce health care costs” [NRLC press release, 5/19].

The exchange dramatized a two-year-old debate over “futile care” that may intensify as national health care reform is considered. The debate is troubling for “right to die” groups who have long championed patient autonomy and criticized “paternalism” by physicians. Having assumed for years that patients’ biggest problem is unwanted overtreatment, they now face the question: What if the patient wants to live, and demands treatment that physicians say is useless?

Such a dilemma posed itself in 1991, when Helga Wanglie’s family demanded continued life support that her Minnesota physicians judged “futile.” Pro-life groups supported the Wanglies, who won their case in court; medical ethicists were divided.

Since most people agree that some “futility” standard is valid in medical decision making, debate until now has focused on the definition of “futile”: Should it be based on effectiveness in preserving life, or incorporate a standard for acceptable “quality of life”? Who decides what constitutes “futility”? But the health care reform debate has focused concern on the cost of health care, raising fears of rationing based on cost-effectiveness. Oregon’s new plan to expand Medicaid eligibility while denying reimbursement for procedures deemed relatively futile is a case in point: A waiver from federal Medicaid requirements was denied by the Bush administration last year, amid claims that Oregon’s rating of procedures was based on a “quality of life” rationale that violates the Americans with Disabilities Act. The Clinton administration has approved the plan conditionally, while urging changes in its discriminatory features.

Pro-life groups have responded these developments in several ways. NRLC has succeeded in attaching “protections against involuntary euthanasia” to bills on withdrawal of treatment in Alabama, Minnesota and Maryland — to ensure that ‘a health care provider cannot deny lifesaving treatment that a patient or authorized proxy has requested, when it has a significant chance of preserving life. Physicians unwilling to obey a patient’s directive may seek transfer to another provider, but must maintain the requested care in the meantime [National Right to Life News, 5/12].

NRLC and other groups are also distributing advance directives that, unlike the “living will,” are geared toward requesting life support [see May 1992 Life at Risk] . The newest such directive is the “Loving Will” produced by American Life League: It directs that “nothing is to be done or omitted to be done with the intent to cause my death,” and requests provision of food and water and “medical treatment and care” in most circumstances. Copies are available from ALL at P.O. Box 1350, Stafford, VA 22555. Phone: 540/659-4171. Life at Risk, May, 1993

Study Shows Flaws in Care of Seriously Ill

A major study of hospitalized seriously ill patients has found that many hospitals provide aggressive treatment that is unwanted and ineffective when patients are near death. It also finds that some efforts to improve communication between physicians and families may not help.

The study may become a political football in the “right to die” debate, since pro- euthanasia groups claim that physician-assisted suicide is needed to avoid a painful and lingering death. “People might turn to physician-assisted suicide because they are afraid, they want control over what happens,” says study director Dr. William Knaus of the University of Virginia. “We want to eliminate that as an option” by improving care [Reuters, 11/21/951.

Far from showing that care of the dying cannot be improved at all, the study simply Shows that one set of solutions long favored by right-to-die groups themselves yields disappointing results. As the Washington Post commented on November 22, “the findings … call into question the conventional wisdom that has propelled the right-to-die movement over the last 25 years: that better information about patients’ preferences and odds of survival would improve care of the dying.” If that movement erred in seeing advance directives and more communication as cure-ails for dying patients, this study provides no reason to think acceptance of assisted suicide will fare better as a solution.

The study project, known as SUPPORT (The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments), studied thousands of seriously ill patients in five teaching hospitals with the aid of a $28 million grant from the Robert Wood Johnson Foundation [See “A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients,” Journal of the American Medical Association, Nov. 22/29, 1995, pp. 1591-81. In Phase 1, from 1989 to 1991, the study “documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time” (p. 1591).

In Phase II, from 1991 to 1994, a similar group of patients was divided so that half could receive interventions aimed at “enhancing opportunities for more patient-physician communication.” Specially trained nurses informed patients and families about their options, asked them about their perception of pain, and encouraged them to express their wishes; attending physicians received reports on these discussions, and a report on each patient’s prognosis based on the Phase I findings. But physicians were not required to share or discuss this information with patients. The result: “physician behavior appeared unchanged” (p. 1596), and the problems in care did not improve.

News accounts say that the study shows “too many lingering, painful deaths” in the U.S. [e.g., Reuters, 11/211. But the study ended its data-gathering in January 1994, and did not focus on terminal cases as such — most patients did not die during their hospital stay, and fewer than half died in six months. In some ways, those who did have terminal conditions like advanced cancer fared better than other patients. In Phase I, the median number of days spent in an ICU was 5 for cancer patients, compared to 14 for surgical patients; and the Phase II intervention did reduce by 80% the number of days that cancer patients had to wait for a written DNR order. Putting all the data in perspective, most patients or their surrogates in Phase II rated their care as “excellent or very good” whether they were in the control group (68%) or the intervention group (69%). Life at Risk, November, 1995

Commentary: The SUPPORT Study and Care of the Dying

The SUPPORT study published in the Journal of the American Medical Association seems to confirm many Americans’ fear of a painful and lingering death. The most depressing aspect of the study is its failure to show improvements in care after an intensive effort was made to improve understanding and communication between patients and physicians. How can this study be placed in perspective?

The Role of Patient and Physician: The study confirms that many physicians do not listen well to their patients; adding a nurse-facilitator to the equation seems to achieve little. As Dr. Bernard Lo notes in an editorial accompanying the published study, “some physicians may have difficulty accepting suggestions from nurses regarding life-sustaining interventions” [JAMA, Nov. 22/29, p. 1636]. But not all the blame for poor communication rests with physicians —patients and families were also reluctant to discuss end-of-life decisions. Even after being encouraged by a SUPPORT nurse to discuss their preference regarding CPR with their physician, only 40% of patients and families did so (compared to 37% in a control group); another 41 % said they would like to have discussed it. Improving lines of communication does little good if people don’t know what to say or can’t bring themselves to say it.

Defining “Over-Treatment”: The SUPPORT study found that many patients’ wishes to forgo CPR or other aggressive treatment were ignored. But only 31% of patients expressed a preference for the withholding of CPR, and their wish was acted upon in 51% of cases. Of the other 49%, over two-thirds (71%) were discharged from the hospital alive. In some cases, a patient’s initial preference to forgo CPR may have changed with the clinical circumstances — or a physician may have delayed writing a DNR order to give an effective treatment time to work.

Problems of Under-Treatment: Not explored in the SUPPORT study is the problem of patients’ wishes for treatment being ignored. Other studies show that this is a growing phenomenon. In one recent study based on interviews with 879 critical-care physicians, 96% of the doctors said they had withheld or withdrawn life-sustaining technologies; 39% had done so without the consent, or even without the knowledge, of patients or families, and 3% had made life-ending decisions over families’ objections [”‘Revolution’ in life-support cases noted,” Philadelphia Inquirer, 2/18/95].

The AMA’s current Code of Medical Ethics allows physicians to withhold treatment they feel is not beneficial, stating that “patients should not be given treatments simply because they demand them.” Columnist Nat Hentoff notes a recent court ruling upholding a hospital’s decision to withhold CPR and allow a woman to die against her family’s wishes. He worries that living wills will become “a one-way ticket,” winning doctors’ respect only if they refuse treatment [“Doctors Who Ignore Living Wills,” Washington Post, 8/30/95, p. A23). Doctors’ unilateral decisions to withhold treatment may create a backlash by eroding physician-patient trust. As Dr. Lo observes: “Patients and surrogates may believe that beneficial interventions are being withheld to save money and insist on care that physicians regard as futile or not indicated” [p. 1636].

Pain Control: In the SUPPORT study, 22% of patients said during their second week in the hospital that they experienced moderate or severe pain at least half the time. But this percentage varied from 12% to 32% depending on the hospital, suggesting that some facilities have something to teach others about pain control. Completely excluded from the study were patients receiving hospice care, which specializes in effective pain management. Dr. Lo notes that “no component of the SUPPORT intervention directly addressed the problem of inadequate pain control” [p. 1635]; there is no reason to doubt that improved emphasis and education on pain management among physicians will further reduce unnecessary pain among dying patients.

The SUPPORT results justify concern but not despair. They do not support the conclusion that patients’ problems can be solved only by eliminating the patients through euthanasia. Life at Risk, November, 1995