Ethical Caregiving in Hard Cases

This article is part of a continuing series in the Journal on information outside of the mainstream, with this one of particular interest to long-term care providers.

The President’s Council on Bioethics discussed and deliberated, and in September 2005 published its report entitled Taking Care: Ethical Caregiving in Our Aging Society.¹ One chapter of particular interest to clinicians in the long-term care world is “Ethical Caregiving: Principles and Prudence in Hard Cases.” Presented here is a synopsis of that chapter.

Treatment decisions for people with dementia are among the most ethically challenging situations in long-term care. When people with dementia cannot express themselves competently, their treatment decisions rest with others. Yet no others really know how the emotional residual of past experiences would affect a person’s preferences today, nor can others know how a person’s current experiences feel. The President’s Council on Bioethics (PCB) readily acknowledges that every case is unique since everyone’s past and current experiences are unique.

Because of this, ethical conclusions in the PCB report can only be general. The value of the report is not that it is instructive (tells us what to do), but that it is also reflective (tells us what to think about). So the question for this exercise is not, “What would you do?” but, “What would you take into consideration?”

The PCB chapter on ethical care in hard cases is laced with case presentations.² Four “complex cases” are emphasized by being presented in boxed format in this article.

Values

As lead-in to the cases, the PCB outlines general concerns for treatment decisions in people with dementia. They emphasize that the presence of dementia does not, by itself, decrease the value of one’s life.

However, people with dementia may not understand the value of medical procedures, or make the same “benefit/cost” value decisions as an unimpaired person. Something as simple as obtaining a blood sample may be interpreted as an attack, a violent act. Procedures that are not excessive burdens for unimpaired people “may be excessively burdensome for patients with dementia.”²

While clinicians and caregivers tend to the patient’s current physical well-being, caregivers are also “caretakers of his personal past...of the life he has lived, in addition to the life he is now living.”² Issues of past values and personal dignity should be honored, although it may not be clear how best to achieve that goal.

Treatment Considerations

The PCB offers a list of important considerations when weighing a treatment decision:

• What will happen if the patient is untreated?
• Will nontreatment lead to increased suffering?
• What are the possible indirect consequences of nontreatment? (Will it increase the risk of some other complication, such as a hip fracture?)
• What are the treatment options?
• Are there reasonable alternative treatments? (Taking pills is less burdensome than IV antibiotics, although perhaps less efficacious.)
• Would “slowing down” a disease be a reasonable alternative to attempting cure?

Each treatment decision will rest on the judgment of options and values, comparing the probable outcomes with, and without, treatment. “This is where the true moral complexity of the clinical situation presents itself....”²

Chapter Synopsis

Here, along with the PCB’s observations, are thumbnail sketches of the four cases labeled “complex cases.” This chapter synopsis is reported as objectively as possible. All reporting, however, is subject to some unintentional bias.

Case 1: Patient without Behavior Problems Requiring a Pacemaker

A 75-year-old man with “middle-stage Alzheimer’s” wanders around the assisted living center, and generally appears happy. He develops Stokes-Adams syndrome, which can produce abrupt slowing of the heart. It is recommended that he receive a cardiac pacemaker.

PCB comment: If the procedure to insert the pacemaker is “relatively non-burdensome,” and does not disrupt the person’s pleasant existence, then “the moral presumption in favor of installing the pacemaker seems fairly strong.”

Case 2: Patient with Behavior Problems Requiring a Pacemaker

Same as Case 1, except the man does not seem happy. He lashes out at family visitors, screams at others whom he accuses of stealing his wallet, is often angry and occasionally violent. It is necessary at times to physically restrain him.

PCB comment: Would treating this man, instead of helping him, actually prolong his misery? But forgoing treatment seems like “courting death,” because an episode of Stokes-Adams syndrome without a pacemaker could be fatal.

Moral grounds for not treating include fear that the procedure would lead to even worse behavior, and lead to heavier sedation and more frequent physical restraining. Because of his dementia, the potential complications of treatment may make treatment “an excessive burden.”

But compare this case to a 30-year-old man with disruptive psychiatric behavior with the same disease. Most observers would not hesitate to recommend the pacemaker in that case.

So, in our Case 2, would withholding the treatment represent a decision that it is the dementia itself that determines the decision? This might lead to a declaration that the impairments of dementia “are, by themselves, a legitimate moral reason to aim at death as the means of ending the individual’s unhappiness,” an ethically shaky position.

Other considerations might include the risk of falls from untreated Stokes-Adams syndrome, which might result in a fractured hip, with pain and inhibited mobility. On the other hand, if we know that before his dementia, the man in Case 2 was a thoughtful and decorous gentleman, do we benefit his life “by prolonging his degradation and bad behavior? [Would it be acceptable to not treat because of] fidelity to the person we once knew—that is, out of the loving desire not to prolong the deformation of his past character that merciless nature has now imposed...?”

Case 3: Patient with Resistance, Burdensome Treatment

A 67-year-old woman with middle-stage Alzheimer’s disease lives at home, and is cared for by her family. For her, “life is as good as one might expect given the circumstances,” although it is hard, increasingly hard, on the family. Then the stability of the situation is shattered by the diagnosis of kidney failure that requires dialysis. The physician did not recommend dialysis, but the family insisted. The family took the woman to dialysis a few times, but it was a struggle that made “both the patient and the caregivers increasingly miserable.” Should dialysis be discontinued?

PCB comment: A trial of treatment provides a chance to reconsider. If the burden turns out to be much more than anticipated, treatment can be stopped.

Alternative treatments can be considered, such as peritoneal dialysis, or moving the patient to a facility that provides dialysis, although each alternative imposes its own burdens. The danger is that the family’s decision might make a choice that benefits them, at the cost of the patient’s well-being. On the other hand, the patient’s resistance must be considered, and, in addition to revealing her extreme discomfort, it may be a reflection of her desired autonomy; it may be a statement of her enduring request to be allowed to die peacefully. It may be that to continue treatment is to act against the patient, rather than for her.

Case 4: Patient with Metastatic Cancer

A woman with middle-stage Alzheimer’s disease has a rare cancer, already metastatic to bone. No treatment options remain. The cancer is expected to cause severe pain, controlled only by drugs that cause heavy sedation, bordering on induced coma. She develops a treatable bacterial pneumonia. Should it be treated?

PCB comment: Untreated pneumonia is not always fatal, while treatment does not assure success; the outcome of treatment is unsure, perhaps more so in advanced cancer. This starts the treatment consideration with a moderate degree of uncertainty. The patient has little reason to “fight on, (or) a reason to endure terrible physical suffering...”

But to provide treatment would not mean a desire to make her suffer; instead, it could represent a desire not to abandon care, and to sustain a pledge. On the other hand, a decision not to treat may rest on the conclusion that “there is nothing positive in her subjective experience to compensate or sustain her.”

Humanistic medicine may conclude that, if there are “no ways to benefit the life she has, then we should step back from attempts to treat.” Still, there may be reasons to attempt to postpone death, such as to allow distant children to pay last respects, or to allow the patient to receive religious last rites. “The moral argument could go either way in this case.”

Discussion

The PCB Report received criticism that it did not provide enough discussion about trade-offs in spending healthcare dollars. Increasing care for individuals in the last days of life consumes resources that might be used for other social goods. The following appeared in an article in The Seattle Times: Advocating for what we all might like to see in a perfect world—which is perfect care, no matter what it costs or how disabled a person becomes—the council’s advice falls off the cliff of reality. . . Fraught with politics, religion and deeply held beliefs, the battle to allow boomers a say in their own deaths has just begun.³

In a “personal statement,” Dr. Janet Rowley (Pritzker School of Medicine, University of Chicago), a member of the Council, said, “Where will that money come from? Might it not come from programs that help needy infants receive better health care and early childhood education...? If you asked them bluntly, would grandparents really want to steal from their grandchildren?”⁴

Dr. Rowley also noted that the word compassion was rarely used (never in the chapter synopsized here, although compassionate was used once). It bears repeating that the value of the PCB Report is this: It tells us what to think about, not necessarily what to do. Ethical challenges dealing with residents with cognitive impairment is a common occurrence in our Long-Term Care practices.

We would welcome your comments, experiences, and reflections on this article. Please send comments to Fred Feinsod MD, CMD, at feinsod@fmfmd.com.