Abstract
Introduction
A note for physicians: If you listen carefully to what patients say, they will often tell you not only what is wrong with them but also what is wrong with you.
Yet palliative care espouses goals beyond that of respect for autonomy, goals that may appear at first glance to be universally held and thus uncontentious. For example, “The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies.” 4 Who would not strive for relief of suffering, one might ask?
Yet in reality there are situations where patients or families opt for treatment plans whose burdens outweigh the benefits. Somewhere between choices that are understandable though not recommended, and those that are clearly futile, 5 lie informed decisions that are overwhelmingly inadvisable. Examples might include the patient with metastatic disease who demands to be “full code,” the man who opts for yet another Phase I chemotherapy trial at a distant cancer center rather than spend time with his family, and the woman with end-stage COPD who wants mechanical ventilation even though there is almost no chance that she will ever be able to breathe independently again. In situations such as these palliative care clinicians are torn between their respect for patient choice and their commitment to minimizing suffering. The values of palliative care, then, are not so neutral – or universally accepted – as they initially appear to be.
Why Patients Make “Wrong” Choices
Logically speaking, choices that entail an unfavorable benefit/burden ratio involve either diminishing benefit (such as by refusing something helpful) or maximizing burden (such as by requesting something especially harmful). An example of the former would be a patient who refuses adequate analgesia, perhaps because they feel suffering is helpful as a marker of their disease course or has some inherent value, or because they prefer lucidity with pain to the alternative. In some cases, factual clarification can resolve this issue, whether by identifying more objective methods of monitoring disease progression or formulating an analgesic regimen that maximizes lucidity. The spiritual embrace of suffering – perhaps traced to certain Biblical texts where Jesus seems to command his followers to engage in it (“take up your Cross and follow me,” Matthew 16:24) – suggests a need for pastoral counsel regarding the oppressive misapplication of the concept of “redemptive suffering.” In the meantime, the patient's negative right of noninterference is clearly affirmed by the law, 6 and thus his or her refusal must be honored until consensus can be reached.
Alternatively, a patient or family might choose a treatment course that is likely to heighten suffering. Such a decision can take one of two forms. The first involves a patient who lacks Decision Making Capacity (DMC), and whose distraught family advocates aggressive treatment contrary to the patient's wishes. Through empathic listening and by highlighting the surrogate's obligation to offer appropriate substituted judgment – what the patient would have wanted, not what the patient's loved one wants for him or her – inappropriate treatment can be avoided.
The other scenario involves a patient with intact DMC who either cannot accept her prognosis, or is unwilling to take what one might consider reasonable steps in light of that prognosis. Every palliative care clinician has probably cared for such a patient who, contrary to all thoughtful advice regarding suffering and appropriate goals, requests maximal treatment, which inevitably entails significant burden and holds out minimal hope of benefit. Such a patient presents the clinician with an impossible choice: either respect the patient's wishes, or minimize suffering. This dilemma brings to mind the opening stanza of Dylan Thomas's famous poem:
Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.
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Which, in turn, prompts the question: Were more antipalliative care words ever written?
A reasonable initial response to such a request would be clarification of the facts, and an explanation of relevant ethical and medical details. A patient might be working under the delusion that certain procedures, such as CPR, have a higher success rate than have been shown in scientific studies.
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Perhaps there exists some misunderstanding of the ethical propriety of discontinuing an intervention currently in use, which would benefit from clarification about the legal and ethical equivalence of withdrawing and withholding treatment.
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Or the patient might be opting for a more aggressive treatment plan to reassure her anxious family that she is not “giving up.”
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Dylan Thomas lyrically exhorted his father to soldier on:
And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray,
Do not go gentle into that good night.
Factual clarification and working with patient and family to achieve consensus may resolve this dilemma. Nevertheless, it is critical to note that implicit within this approach is the assumption that if such patients really understood what they were requesting, they wouldn't request it. Further explanation combined with an appropriate amount of persuasion should be sufficient to convince them that the recommended course of treatment is really what they want.
Often, however, the basis of the patient's choice is more emotional than cognitive. Such patients may struggle with feelings of failure if they do not choose a potentially curative course. Palliative care clinicians are experienced in reframing the discussion in terms of the patient's goals as well as the limits of medicine. The use of life inventories or other tools 11 may help patients come to peace with their prognosis, and make what appear to be more reasonable decisions in light of it. Through thoughtful conversation and acknowledgment of the emotional import of the decision, many patients do eventually opt for a more palliative course. However, these may represent a subset of patients who already recognized the wisdom and advantages of that course, and simply needed “permission” to authorize it.
The other subset of patients does not acknowledge such wisdom and advantages. Quite the contrary, opting for a less aggressive treatment course might represent not just a failure on their part, but an indictment of how they have lived their lives up until that point. They might well feel they have something more to do, something else to say. As another stanza in Thomas' poem puts it:
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Honoring patients' heartfelt goals and values, in cases such as these, requires palliative care clinicians to stand by helplessly as the patient suffers avoidable symptoms, not unlike watching a train bear down on a stalled car. And this goes against every fiber of our being.
The phrase “every fiber of our being” is particularly apt, because our moral distress (as Walker Percy notes) says more about what is “wrong” with us as palliative care clinicians than it does about the patients we care for. This is especially true in four areas where we have reached firm, yet ultimately questionable, conclusions:
Patients should be comfortable with (or at least conversant in) death, just as we are.
We pride ourselves on being persuasive communicators.
We recognize the impact of suffering, and know what to do about it.
We like to believe that our assumptions are universally held, and thus don't constitute biases.
By exploring these beliefs we can pinpoint the source of our distress, and also the way past it.
What is “Wrong” with Us
First of all, palliative care clinicians are comfortable with (or at least conversant in) death. More than that, we believe that everyone else should be, too, especially as they approach the end of their lives. We thus invite terminally ill patients to reflect on their own lives, to plan for a good death, and to say what they need to say while there is still time. In doing so, we seem not to recognize that some people have spent their lives denying their own mortality, or at the very least cheating death at every opportunity. As such, it is inherently unreasonable to expect them to alter their fundamental life philosophy at the eleventh hour, primarily based on our opinion of what is good for them.
Perhaps our reason for taking the patient's choice so personally is that we are persuasive communicators, and have led other patients past their reluctance to face their own mortality into a place of peace and acceptance. 12 Past success heightens future expectations, based on noble if rather paternalistic motivations. We may, therefore, be tempted to interpret our inability to disabuse the patient of their lifelong goals over the course of a few conversations as a failure on our part, not recognizing the hubris inherent in that conclusion.
This temptation highlights the fact that it is more difficult to accept failure at achieving relief of suffering than failure at promoting autonomy. Palliative care clinicians can probably point to situations where a family opted for a gentler course of treatment than an incapacitated patient might have chosen for himself, with the unspoken justification that this was the “better” way for a patient to die. We reach this conclusion based on our clinical experience regarding the relative benefits and burdens of a given treatment. Yet while the burdens of certain invasive procedures are well known, and the benefits of foregoing them are acknowledged in the palliative care community, there may exist treatment benefits that palliative care clinicians find difficult to recognize.
Ironically, for all of palliative care's talk of total suffering, 13 we may be unwilling to accept that a patient's emotional suffering over choosing a palliative course of treatment may be more severe than eventual projected physical suffering from an aggressive course. Perhaps we who have been heard to suggest getting “DNR” tattooed on our chests 14 cannot relate to a patient's desire to bet everything on life, no matter how steep the odds. Or we feel that we can eradicate (or at least ameliorate) all suffering, which is a grand claim, indeed. Perhaps, if placed in that same situation, we might not go gently into that good night, either. 15 At least right now, it is difficult for us to understand that even if some limitation of treatment spares physical pain at the very end of life, the patient's feelings of weakness or cowardice each day leading up to that final moment might constitute “intractable suffering.” For patients who (in Thomas's words) “near death, who see with blinding sight, blind eyes could blaze like meteors and be gay,” the slimmest hope of one more chance at life justifies every burden, and denying that hope calls into question all that came before, and everything they are.
In the end, if we are brutally honest with ourselves, we must recognize that palliative care is as value-laden as any other specialty. Beyond our stated principles of autonomy and beneficence lie tacit assumptions that are not universally shared, such as that life should not be preserved at all costs, and that the best response to terminal illness is peacemaking. Only when we encounter “good men, the last wave by, crying how bright their frail deeds might have danced in a green bay,” can we see full well that our assumptions are biases commonly (though not universally) held, and, as such, can impair our ability to provide whole person care by honoring a patient's heart-felt wishes.
Responding to a Patient's Request for Burdensome Treatment
The question remains of how to respond to a patient's request for particularly burdensome treatment. The first step should be to verify that the patient truly understands the decision he or she is making. Before exploring how to deal with a patient's apparently unwise decision, it is critical to make sure such suffering is truly unavoidable.
The second step involves acknowledging our own feelings of failure and helplessness. It is difficult to enter into someone else's suffering – hence the need for the specialty of palliative care – but it is more difficult to enter into seemingly needless suffering. Even for professionals who are conversant in the language and experience of anguish and death, this can present a significant challenge. We need to seek out additional support in the form of colleagues who can reaffirm that we did everything we could to promote quality of life, and who can empathize with us in the vicarious suffering caring clinicians experience.
There may yet be feelings of failure, but it is critical to acknowledge that the nature of the failure is cognitive, rather than professional. We haven't so much fallen short of the best outcome for the patient, as failed to recognize that what we think is best for the patient isn't what they believe is best for themselves. The proper response is not rededication – as our commitment was never in doubt – but rather a cognitive shift by which we are able to recognize our assumptions for what they are. If nothing else we will be able to see that, for all our talk of respect for autonomy, in the end it can be a rather frustrating principle to honor.
Herein lies another irony. Palliative care clinicians spend a great deal of time convincing patients (and even other clinicians) that the human body doesn't always do what we wish it would do. As the saying goes, “We hope for the best, and prepare for the worst.” Long ago we stopped trying to explain why someone who exercised and ate right and didn't smoke got cancer at an early age. We simply accept that there are some things we have no control over, and seek to maximize quality of life by the avenues available to us. The scenario addressed by this paper confronts the “enlightened few” with that same conclusion, only this time applied to the human soul. For all our persuasive words and empathic listening, sometimes people make choices that we cannot understand, and yet are called upon to respect.
At the same time, we must make sure the patient knows that all options remain open. Just because a patient has chosen another Phase I trial doesn't mean they are obligated to complete it, especially if the burdens become intolerable. After spending time in the hospital, a patient may reconsider their request for intubation or resuscitation. Palliative care clinicians must battle the very human tendency to distance ourselves from those we are unable to help, in order to be continually available should our services (and counsel) at some point be helpful to the patient.
Even if we take all these concrete and helpful steps, it still isn't easy to watch someone we care about suffer, particularly when we have the tools which (we believe) will minimize their suffering. This is a constant reminder of our own limitations, and that of our specialty in a world where autonomy reigns supreme. In the end, perhaps the most we can do is share with the patient that it is difficult for us, too. Done in a sensitive fashion, this will ensure they know how much we care for them, even if they did not find our recommendations compelling. They'll also know we're ready to help them, if they decide to let us.
In the end, we will have given the patient permission to be true to themselves (and their very un-palliative philosophy of life). And, hopefully, we will have learned something about ourselves, as well, and why we do what we do.