Deciding how much care is too much
Ethics case study explores futility and appropriate treatment
From the March 1997 ACP Observer, copyright © 1997 by the American College of Physicians.
- Previously published ethics case studies are available online.
- For additional ethics resources, visit the College's Center for Ethics and Professionalism
This is the 18th in a series of case studies with commentaries developed by the ACP Ethics and Human Rights Committee. The series uses hypothetical cases to elaborate on controversial or subtle aspects of issues not addressed in detail in the "ACP Ethics Manual" or in other position statements.
Sandra Jones, an 83-year-old woman with Alzheimer's type dementia, severe osteoarthritis and type II diabetes mellitus, has been a resident of the Greenview Nursing Home for five years. For many years Mrs. Jones lived with her daughter and son-in-law, but as her mobility decreased, caring for her became exceedingly difficult. Four years ago, Mrs. Jones' children reluctantly admitted her to the nursing home.
One year after being admitted, Mrs. Jones developed end-stage renal disease and began receiving dialysis. Despite mild dementia, her daughter and physician observed that she had a reasonably good quality of life, enjoyed a variety of activities and tolerated the dialysis well.
In the last three years, however, Mrs. Jones' cognitive ability has declined markedly. Now, she only occasionally recognizes her daughter and is entirely dependent for her activities of daily living. She is mostly mute, except when she cries out in pain or fear, and shows signs of pleasure only when being spoon-fed or when listening to an accordion player who visits the home every month. Throughout this time, her daughter has continued to visit frequently and has always appeared to have her mother's best interests in mind.
Recently, each trip to dialysis has become an ordeal. Mrs. Jones resists getting on the transport gurney and fights the introduction of the arteriovenous catheters. A medical workup reveals no new underlying illnesses to account for this change in behavior, and her physician ascribes her response to progressive dementia. The nursing home director, Dr. Andrews, begins to believe that dialysis is more of a burden than a benefit for Mrs. Jones. Furthermore, the director feels that dialysis may be a waste of resources for someone with such a poor "quality of life."
Without dialysis, Mrs. Jones would surely die in several weeks. Dr. Andrews discusses the situation with Mrs. Jones' daughter, who requests that her mother continue to receive dialysis. She argues that "mom was always a fighter who loved life" and that she deserves to have "everything" done for her. Besides, she observes, Medicare pays for the treatments, so the nursing home need not worry about the resources.
Both Mrs. Jones' daughter and Dr. Andrews are concerned about the patient's welfare. Nevertheless, they disagree over what course of action is ethically appropriate. Is Mrs. Jones' dialysis a case of futile care, as the nursing home director believes? Or, should she receive "everything," as requested by her daughter? And what about the issue of wasted resources? In today's constrained health care environment, should expenditures such as dialysis for demented patients be limited? Each of these questions deserves further exploration.
While many agree that patients have a clear right to refuse unwanted life-sustaining treatments, there is less consensus about patients' right to demand those same life-sustaining treatments once a dismal prognosis has been made. Many physicians, conflicted about providing this care, are looking for guidance on the question of "futility." To clarify the discussion, some have defined futility in qualitative, quantitative and physiological terms. (1,2)
Qualitative futility means that applying the treatment will not improve the patient's quality of life, which is already unacceptably poor. The obvious problem with a qualitative definition of futility is that patients (or their surrogates) and physicians may disagree on exactly what constitutes a poor quality of life. (3)
The concept of quantitative futility, on the other hand, does not consider quality-of-life issues. Under this definition, a numeric probability of survival—less than one in 1,000, for example—is used to decide which treatments can be considered futile and should not be offered because the patient is unlikely to survive, even with the intervention. (1) This view accords physicians much discretion, including authority to make unilateral treatment decisions. Some disagree with this definition, however, stating that determining such a cutoff is value laden and can still result in serious disagreement between patients and physicians.
Finally, physiological futility has been suggested to define situations in which it is impossible for the intervention to benefit the patient at all. (2) Under this type of definition, prolonged artificial hydration and nutrition for a patient confirmed to be in a persistent vegetative state would not be futile because the patient would physically benefit from such treatment, but performing a lung transplant for someone with widely metastic lung cancer would be futile. While nearly everyone agrees that in cases of physiological futility physicians are not obligated to provide treatment, there is less consensus about what to do in cases of qualitative or quantitative futility, when the patient or surrogate chooses continued treatment.
Rather than arguing about futility, perhaps a better way to approach a case like that of Mrs. Jones' is to frame the discussion around her goals for care. If her daughter and Dr. Andrews can agree on the overall goals, then treatment decisions, such as dialysis, can be evaluated in light of these goals. For example, is comfort or longevity the primary goal? And how much discomfort does Mrs. Jones daughter believe her mother would be willing to suffer in order to lengthen her life? Renal dialysis will achieve the goal of keeping the patient alive, but it will not achieve the goal of improving her quality of life or restoring her cognitive function. Furthermore, the price of longevity may be having to fight or sedate a combative patient.
Oftentimes, discussing a dilemma by focusing on goals will help resolve differences. It turns out that the problem is not so much a true disagreement as a misunderstanding over what goals are and are not achievable.
Speaking about goals also helps put requests that "everything" be done into a proper context. In fact, such requests ought never be left unexplored. As with futility, "everything" is only a useful statement in reference to some goal. Would this daughter really want her mother to undergo a screening persantine-thallium test, cardiac catheterization and bypass surgery for any detected lesions?
The nursing home director raised the question of appropriate resource allocation. Could the money being spent on dialysis of this demented patient be better used to treat more functional patients? This is certainly a valid policy concern; the "ACP Ethics Manual" states that "decisions on resource allocations must not be made in the context of an individual patient-physician encounter but must be part of a broader social process." (4) Making decisions at the community level is thought to help ensure fairness, because decisions are less likely to be arbitrary, and there is a greater likelihood that money saved will be channeled into more appropriate needs.
On the other hand, some who have proposed definitions of futility and frameworks for thinking about the issue maintain that cost not be a consideration in medical futility determinations, and that the focus be the likelihood and quality of the expected benefit (5).
Given this background, how ought the physician facilitate decision-making for an incompetent patient? First, Dr. Andrews should learn whether Mrs. Jones ever issued a written advance directive which would direct providers toward her wishes and/or a surrogate decision-maker. In this case there is none. Dr. Andrews should also explore whether Mrs. Jones discussed her wishes with her daughter or anyone else. She should then identify an appropriate decision-maker. In this case, although the daughter was not formally appointed as Mrs. Jones' surrogate decision-maker, she has acted in that role without question until now and seems to have her mother's best interest in mind. Physicians should be aware that laws and processes for determining who should be a surrogate decision-maker vary from state to state.
In cases where the patient has not left an advance directive, the "ACP Ethics Manual" suggests that physicians and surrogates first try to make a decision based on substituted judgment. By taking into account what is known of the patient's values, goals and previous choices, physicians can make a decision that best approximates what they believe would have been the patient's decision. In cases where such values and preferences are unknown, surrogate decision-makers must base their decision on what they believe to be in the patient's best interests. This is done by taking into account their current and projected quality of life according to the patient's perspective. When using either of these standards, physicians must be aware that local law may be relevant to decision- making regarding treatment. (4)
By focusing on the quality of communication between the physician and surrogate, much more can be done to resolve the dispute and achieve an ethically acceptable result. (6) Discussion between Dr. Andrews and Mrs. Jones' daughter must be open and frank. The physician should acknowledge the terrible grief and bereavement the daughter has suffered because of the loss of her mother as she knew her, and through empathic statements communicate her support. Dr. Andrews should explore the daughter's goals for care for her mother, outline a realistic prognosis (e.g., continued cognitive decline) and present various treatment options. In discussing the option of withdrawing dialysis, the physician should address the daughter's potential fears about pain and discomfort and reassure her that withdrawing dialysis does not mean withdrawing care. Dr. Andrews should outline the specific palliative measures that would be used and explore exactly what Mrs. Jones' daughter means when she says she wants "everything" for her mother, and what limits, if any, the daughter would set. Finally, the physician needs to identify any remaining areas of true disagreement. For example, even after being educated about all the options and thinking about the goals of care, Mrs. Jones' daughter may assert that she is acting on her mother's wishes or place greater value than Dr. Andrews on her mother's present quality of life.
Through such communication, most disagreements can be resolved. In this particular case, the patient's own actions may end dialysis. If she continues to actively refuse the procedure, it would seem untenable to sedate Mrs. Jones and fight her three times a week for four hours of dialysis. If the patient's daughter witnessed these episodes, she would most likely agree to discontinue the intervention. However, if a true disagreement remained in this case, the medical director should not withdraw dialysis unilaterally.
Perhaps the most important lesson physicians can take home from this case is that better advance planning could have prevented this dispute. These issues could have been addressed when Mrs. Jones was first admitted to the nursing home and was still perhaps competent to make decisions. The federal Patient Self Determination Act requires nursing homes to ask prospective residents or family members if advance planning has been discussed and to inform patients of their right to identify their preferences for care in advance. The law does not, however, require individuals to do advance planning.
While a specific therapy such as dialysis may not have been anticipated, a discussion that focused on the patient's overall goals of care would have provided the physician and family members with a better idea of the patient's wishes. In fact, when dialysis was initiated, it would have been useful to outline the goals of therapy and to agree upon when the burdens of the intervention would no longer be worth the benefits of prolonging Mrs. Jones' life.
Acknowledgments: The Ethics and Human Rights Committee would like to thank James A. Tulsky, ACP Member, author of the case history and co-author of the commentary, and Lois Snyder, JD, co-author of the commentary.
1. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med. 1990;112:949-54.
2. Truog RD, Brett AS, Frader J. The problem with futility. N Engl J Med. 1992;326:1560-3.
3. Youngner SJ.Who defines futility? JAMA. 1988;260:2094-5.
4. American College of Physicians, ACP Ethics Manual (third edition). Ann Intern Med. 1992; 117:947-60.
5. Jecker NS, Schneiderman LJ. Futility and Rationing. Am J Med. 1992; 92: 189-96.
6. Dunn PM, Levinson W. Discussing futility with patients and families. J Gen Intern Med. 1996;11:689-93.
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