Health Affairs, 26, no. 3 (2007): 836-840 doi: 10.1377/hlthaff.26.3.836 © 2007 by Project HOPE	New Online   Senate Health Reform Bill   Rewarding Providers   Public Option Policy Brief   Health Reform & Abortion   Delivery System Reform

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Narrative Matters

Listening To Anna

I had an inkling that this request was coming, and I had given the issue what now seems like perfunctory thought. But I never really considered saying no. I trusted that Anna’s living will, which we discussed in painful detail, would guide me through whatever decisions would have to be made. And, perhaps naïvely, I figured that events would unfold in one of two ways: There would be a clear moment of choice about some last-moment intervention when I could refer to her advance directives to say "no more"; or she might simply die in her sleep and all questions of responsibility would become moot. I hoped for the latter; at worst I anticipated the former.

As it turned out, for almost two years my "durable power" remained an abstraction—a scary, albeit sensible arrangement to be enacted at some later point. At each of several critical junctures—a brain tumor, lung embolisms, a pancreatic tumor—Anna was able to speak for herself, to say that she wanted to go through one more round of treatment. Eventually, though, she started to fail mentally. Eighteen months after the initial diagnosis, this extraordinarily efficient and intelligent woman found it almost impossible to provide her friends with shopping lists that captured the essence of what she wanted, what she could still tolerate eating, and what household supplies were running low. "Gatorade," she’d say when asked, "and something else, too."

Then she had several falls, and her friends suggested round-the-clock care; reluctantly, she agreed "for the time being." After the second fall, I took her to the hospital for scans; a few days later, she and I each spoke with her oncologist. When I asked what she remembered from her conversation with him, Anna countered by asking what he had said to me. Believing that her question was motivated by a need to hear the information again, I told her that the MRI showed no new progression of her cancer. I added a harder truth, however: He believed that the mental deterioration she had experienced so far, although unexplained, was not going to reverse itself and might very well become worse. In a response seared into my memory, Anna said that this was the "last thing" that she would have wanted to have happen, "but there it is." When I awkwardly restated what I thought she meant ("I think I’ve just heard you say that you hate what is happening, but that you are going to hang in there"), she agreed with my rendition and added, "Yes, I’m still able to enjoy it when things are pleasurable."

Two days later, Anna fell again and broke her hip. Her internist met us in the emergency room and asked me whether I wanted a "Do Not Resuscitate" order to be in effect during the surgery. I insisted that he ask her. Even in great pain—or maybe because of the great pain—she was clear: She wanted to be "Full Code." In other words, do everything possible to keep her alive.

Full Code—And Worsening

 
THE TRAUMA OF THE SURGERY SEEMED TO EXACERBATE her mental deterioration. After a week in the hospital, Anna was transferred to the rehabilitation wing of a local nursing home, where she initially declined still further. For some days, she was so unable to communicate that she had to use simple pictures to designate her comments and needs—cold, hunger, light. When the speech therapist asked me about using a picture board for communicating with Anna, I was shaken. I could only say that this woman, my great friend Anna, had recently been fluent in English, French, German, Italian, Russian, Hebrew, Latin, Greek, and Arabic. A picture board? Not unreasonably, her doctor said that he now considered the DPOA for her health care to be in effect.

At one point (I think it was about a week or so after her transfer to the nursing home), Anna and I had another discussion on how she felt about what was happening. Although she told me that for now she was content to "cluck along," she was clearly disoriented (she didn’t seem to know where she was, or why she was there) and frequently dispirited as well. And for a while, the most she could manage by way of nourishment was a bit of watermelon (which she called, when ordinary words failed her, "refresher cabbage") and a few sips of water.

One morning, I was approached by the head nurse, who told me that the guidelines for Anna’s care put the nursing home in an untenable position. They had a patient who was clearly failing but who was Full Code. To resolve the contradiction—and ensure the status of their license—they would have to hydrate Anna and, quite possibly, put in a feeding tube. Was that what her proxies wanted?

I tried to ask Anna to express her own desires, but her erratic dementia was worse than usual that day. And so Louis and I looked for advice in her advance directives, where she had modified the boilerplate language to make certain that the document she signed reflected her priorities of being able to exercise her mental faculties and of living independently:

In the event that I suffer from a condition in which there exists no reasonable expectation of (a) my recovering the use of my mind, memory, and imagination, and/or (b) recovering the physical and mental resources needed for living with adequate independence from medical, mechanical, and nursing support, then I want to be allowed to die as quickly and painlessly as possible.

In another stipulation, she had reiterated her second concern:

If I suffer a condition from which there is no reasonable prospect of regaining my ability to think and act for myself, I want only care directed to my comfort and dignity, and authorize my agents to decline all treatment (including artificial nutrition and hydration) the primary purpose of which is to prolong my life.

Clearly, these priorities had already been severely compromised; only in the loosest sense did she still have her "mind, memory, and imagination," and she was utterly dependent now on nursing aides for basic care (and likely to remain so). Given those realities, did the charge that she be "allowed to die as quickly and painlessly as possible" and that we "decline all treatment" designed to prolong her life mean that we should forgo both hydration and a feeding tube? How should we mesh these directives with her recent statement in the emergency room that she wanted to be Full Code, or her even more current statement that in spite of her limitations she was content to "cluck along"?

Ironically, given the diligence with which Anna had tried to express her desires, this moment of crisis was precipitated by the structural arrangements of where her care was located (and the demands of the institution’s interpretation of the state’s licensing standards) rather than by Anna’s needs or medical condition alone. The letter that Louis and I wrote to the nursing home expressed then, as well as I could now, our reasoning in response to the impossible situation in which we all had been placed:

Anna’s DPOAs are comfortable with a decision to rescind the Full Code and make her DNR. We also would like to move her to "comfort care," provided that she can be allowed to continue her already existing medications.... We would like to try an I.V. at least once, because we believe dehydration is both uncomfortable and likely to contribute to mental confusion.... We do not view this as a "slippery slope." We would not insist on an I.V. if she strenuously opposed it on more than one occasion; nor do we want to see this as a permanent procedure. And we would not want to take the step of a feeding tube. In all of this, Anna’s comfort, desires, and dignity remain our guiding concerns.

In fact, we were lucky that one round of hydration did, indeed, appear to make her more comfortable and alert, and she subsequently drank enough to maintain adequate hydration on her own. We were lucky, as well, that Anna continued to eat enough that she was no longer at risk of starvation. And, in the two months that followed, there were good days when Anna could respond with pleasure to food, to massage, and to conversation. There were also days when it was clear that all of these were a torment.

There is no dramatic end to this story. One day, about three months after she entered the nursing home, Anna’s internist and I talked in the hall after he had examined her. He told me that the cancer had clearly returned. He could feel—and I could see—what was undoubtedly a large tumor in her neck; he assumed that there were others as well, but we were well past subjecting her to x-rays. He could give me no time frame, but he agreed to ensure that she remain comfortable.

Uncharacteristically, and much to my immediate relief, Anna asked me nothing about what he had said to me in private. That night, she died in her sleep, much as I had hoped she would before I had fully understood how early and how urgently I would be called on to interpret her wishes.

Respecting Advance Directives

Top Full Code--And Worsening Respecting Advance Directives

 
THE 2005 REPORT OF THE President’s Council on Bioethics, Taking Care: Ethical Caregiving in Our Aging Society (http://www.bioethics.gov), explores a range of issues having to do with the dilemmas that face those who care for individuals approaching death. It concludes with a series of recommendations. One of these questions the utility of the kind of advance directives Louis and I relied on to make decisions about Anna’s treatment options:

Advance instruction directives (or living wills), though valuable to some degree and in some circumstances, are a limited and flawed instrument for addressing most of the decisions caregivers must make for those entrusted to their care.

In its explanation for its position, the council argues that individual caregivers should not be bound to living wills over time, because the documents fail to capture the true complexities of practical and ethical care in given situations. The council also worries about the very real possibility that a person’s decisions made with respect to "conjured situations imagined in the past" might be altered in response to "concrete situations experienced in the present."

This aspect of the council’s stand about end-of-life care might well be linked to the current administration’s concerns about other issues—including abortion and embryonic stem-cell research. Whatever the hidden agenda (if, indeed, there is one), a quite explicit thrust of the report is, as Deborah Stone observed in her review of it in the American Prospect, "to prevent people from choosing death earlier than medical technology might allow or nature might ordain." Those who sign on to this goal might very well read Anna’s story as evidence that one can happily adjust to quite diminished abilities and as evidence that advance directives fail to anticipate changing attitudes and changing circumstances. And, from this perspective, one could argue that her proxies should have agreed to aggressive treatment at every stage of her care and especially when confronted with the possibility of her death from inadequate hydration and malnutrition.

I don’t read it so simply.

To be sure, enacting Anna’s advance directives proved to be less straightforward than seemed to be the case when she crafted them some twenty months before her death; no one could have foreseen either how much she would change or how the structure of care would force some issues. But those directives were crucial in helping her proxies determine that some treatment options would be wrong. Anna had expressly said that she didn’t want her life needlessly prolonged. Out of respect for the person who wrote the living will, as well as out of respect for the patient she became, we interpreted the contentment of "clucking along" as prohibiting uncharted territories and new discomforts (as opposed to the familiar discomfort of an IV).

The problem of how to handle decisions for patients who can no longer speak for themselves—or can do so only intermittently—cannot ethically rest in discounting what they said earlier. Nor can it rest in trusting the wisdom of proxies as the President’s Council concludes with its second recommendation: "Instead of attempting to specify what should be done, advance proxy directives specify who should make crucial decisions on our behalf." In explaining this recommendation, the council argues:

[Advance proxy directives] ratify our fitting desire to be placed in the hands of loving caregivers whom we trust with our wellbeing when we can no longer act to promote it ourselves. Naming of proxy decision makers provides clear identification of who shoulders responsibility to act for the patient and makes it clear to physicians and others with whom they must deal. Such knowledge makes it much more likely that there will be the desirable discussions between family and professional caregivers at all important junctures of treatment and care.

But there are many unreasonable (albeit implicit) assumptions here, some of which were challenged by Anna’s situation as they undoubtedly are in many others. She was hardly unusual in dying without family close by; indeed, this is precisely the case for soldiers who die at war and for those who are estranged from, or have outlived, their biological kin. If Anna was lucky that in the absence of family she had friends she trusted to serve as DPOAs, she had been adamant that her trust rested utterly in having provided them with instructions when she signed her "living will." Without those instructions, she would never have ceded the autonomy that was so critical to her that she had inserted it twice into her advance directives. And her friends would never have accepted responsibility for her care without knowing what values and goals she endorsed.

Proxies and advance directives go hand in hand, inseparable one from the other. Some people might be fortunate enough to have both clear guidelines that can be followed and proxies who will interpret them faithfully. But only the clear guidelines ensure that a patient can have her or his own voice in shaping the decisions enacted at the end.

Editor's Notes

 
Margaret Nelson (mnelson{at}middlebury.edu) is the A. Barton Hepburn Professor of Sociology at Middlebury College in Middlebury, Vermont. The names in the essay have been changed.

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