Monday, December 14, 2015

Physician as Healer or Harmer? The Ethical Context of Aid in Dying

by: Elizabeth Dzeng, @LizDzeng

 As ethicists like to point out, what is the law is not always ethical and what is ethical is not always the law. Passage of the End of Life Options Act in California does not imply that we’ve resolved the debate on aid in dying, nor should it define our moral stance.

 However, it does provide us with new opportunities to find common ground. The energy and passion that motivate advocates on both sides, have always been rooted in the same desire to improve the way we die. The perspectives of those who oppose aid in dying will be especially critical, to give voice to vulnerable individuals for whom we must insure ethical responses with proper safeguards and support systems in place. This is an opportunity for us to critically evaluate and rethink our approach to improving end of life care as a whole.

 Aid in dying is controversial precisely because it exemplifies the many ethical dilemmas our society has grappled with – concerns of injustices that predominantly affect the poor, the need to protect vulnerable populations, and the tensions between patient choice and control, versus the role of the physician as a healer. Indeed, aid in dying is controversial because questions physicians’ fundamental professional identity as a healer. The American health care system is geared towards healing people when something can be fixed - and does a very good job of it. The problem is that this healer ethos falls apart when the patient can no longer be physically healed. We don’t do a great job of helping patients die peacefully, in part because clinicians are often uncomfortable when they can no longer heal. Medical culture too often sees death as a failure and physicians find it challenging to discuss death.

 Aid in dying also forces us to confront a professional code to first do no harm. However, lines have already been blurred between the Hippocratic Oath’s mandate and the potential for harm in the treatments we provide at the end of life. A recent study for example, demonstrated that chemotherapy does not confer survival benefit nor improves quality of life near death, and even more alarming, worsens quality of life for those with a high performance status. Atul Gawande, Sharon Kaufmann, and others remind us that medicine’s technological imperative and other structural incentives drive us towards interventions that do not help, and frequently harm. And Katy Butler eloquently reminds us of the havoc the process plays on caregivers who support the dying.

 The calls for legalizing aid in dying thus reflect our broader concerns about medicine’s failure to facilitate a good death. As such, a successful, ethical response must also shine a light on how we generally care for the dying. To start, we must broaden our understanding of what healing means, and recognize that even when the physical cannot be healed, that we must still play a role in the psychosocial, spiritual, and holistic healing needed to prepare for death.

This blog is an extended version of the introduction to the ethics panel at the End of Life Options Act Response Conference


Marian Grant, RN, CRNP said...

While I agree that we need to inprove end-of-life care so that all Americans can expect a peaceful death, if we redefine that to getting the death they want, then aid in dying may be an element. I've had patients who were physicially comfortable but tired of the long struggle with serious illness. They didn't want to become more debilitated, something we can in no way yet avoid. For others it's the feeling of controlling death that is appealing. Until we can "fix" those issues, some will want to choose how and when they die. And as healers we need to be ready for that.

Jeff Lycan said...

Liz, I read you post this morning with great interest. However, the act of placing the topic of suicide within a discussion and giving it the same importance of "improving the way we die" as well as including the concept of finding "common ground" creates a bias and establishes suicide as an equal partner in the discussion.

I would argue that the system we have fails to appropriately identify serious illness in conjunction with having individualized specific conversations about disease and trajectory of illness. In my opinion, this is a huge divide to cross before we would ever contemplate suicide as an appropriate avenue of care.

Until our system: embraces holistic care around those with serious life-limiting illness; appropriately identifies goals of care; and further develops palliative, supportive, even hospice care, this jump to suicide should not even be in the discussion except as an outlier of desperation.

Our abilities to provide palliative and supportive measures in this space are further along than our research. But what little research we have appears to suggest that aggressive palliative care can produce positive results, both in quality of life and often in length of life. Too bad that fee-for-service and "a head in a bed" mentality continues to drive our systems. Additionally, I am concerned that "little money" in pallliative care creates less research in a capitalistic health care environment that is mostly focused on volume.

I know the data in Oregon demonstrates that most pateints choosing suicide are on hospice. However, I also have read that research and find comfort that the individuals that chose to obtain an order but didn't commit the act of suicide, did so in part due to the relationship they had with thier hospice caregivers.

Thus, it leaves me to wonder "how humanistic is our health care approach"? A study by the Health Policy Institute of Ohio suggests that 80% of what contributes to the cost of care, isn't care at all but the supportive, or lack there of, environment surrounding the individual in the community they live. I can understand in acute care episodes focusing only on the disease process and "fixing" the issue. However, in serious life-limiting illness, when our system doesn't provide a holistic approach like palliative or supportive care, are we disenfranchising the patient and perhaps leading some to desprite acts?

Let's hope that the shift to value and quality, meeting the triple-aim, patient centered care, medical home, and care in the community provide for a more humanistic and dignified apporach to care, and helps us as we travel towards death.

Jeff Lycan

Liz Dzeng said...

Thank you, Jeff, for your comment and for engaging in this discussion.

To place this blog in context, California has legalized aid in dying and as such, it will legally become an option in the near future. As such, whether or not practitioners oppose or advocate for it, we have no choice but to respond to it. A response does not mean that individuals will need to prescribe - opting out is an option. However, patients will now legally have the option to consider aid in dying. The concern is that this might become an attractive option for someone who is not receiving adequate palliative care. It is thus important that we take major steps to improve palliative care delivery and access.

There are of course, many reasons why people consider PAD, beyond pain and symptoms. Loss of control, sense of self, and other existential suffering related to dying are also factors (Loggers, 2013 NEJM; Pearlman, 2005 JGIM). You mentioned that many who request don't go on to take the pill. That is true, and may reflect the access to palliative care that occurs following the request. For others, the act of making the request and getting the pill gives them a sense of control over their body and illness that gives them the courage to go on (without taking the pill).

I would like to emphasize that I nor others are in no way implying that suicide should be placed as equal partners nor of equal importance to adequate palliative care. A physician should never offer assisted suicide as an option, but the request should come from the patient. Physicians should though be willing to discuss and explore reasons behind these requests (Back, 2002 Archives)

I agree with you that prognostication is also an important issue, as are many other palliative care needs that should be addressed. Again, the reality is that this will be the law. We have no choice, the law is on the table, so many of these concerns that you very validly point out will need to be addressed in order to respond ethically to aid in dying.

Judith Henry said...

A friend of mine with breast cancer that had migrated to her brain and her lungs was finally moved to the hospice wing of a well-known hospital, where she died a few days later. This move was made after her oncologist, who continued to prescribe daily chemo and talked about discharging her to rehab, was finally told, "Enough." Arrogance? Indifference? i can't explain it, but the final words of this article must be embraced by the medical profession.

"To start, we must broaden our understanding of what healing means, and recognize that even when the physical cannot be healed, that we must still play a role in the psychosocial, spiritual, and holistic healing needed to prepare for death."

Katy Butler said...

The widespread citizen interest in the "Right to Die" is a wake-up call to a fragmented medical system. In my opinion, it's a way for the average Joe and Jill to say: "We go on strike. We don't like the deaths we've seen you hand our grandparents and parents. We don't have language for it, but we're playing those bad movies in our heads, we're frightened, we're disempowered, and we declare our independence." It's an attempt at a simple black-and-white "solution" to a complex problem. A question about right-to-die might, I think, spark questions: 1. What is going on that led you to ask about this? 2. Has anyone talked to you about the normal course of your illness, and how you are likely to die from it? 3. What are your fears about the illness, and the side-effects of treatment? 4. What do you most fear about dying, and how can I help? 4a. Do you understand that you have the right to refuse or ask for the withdrawal of any treatment, and to pick and choose between treatments to find those that meets your goals? 5. What really matters to you, what can I help you with, what makes your life worth living, what symptom bothers you most? Widening the lens towards broader emotional and moral responsibilities allows questions about right-to-die to be the opening of a window, rather than the closing of one.

Liz Dzeng said...

Thank you so much, Katy, for your comment. I completely agree that aid in dying is a broader societal movement against dissatisfaction with the way the medical industrial complex orchestrates the way we die. While I believe autonomy and choice are important, I worry that it becomes the substitute for care.

I wanted to recommend an article that I really liked, written by Tony Back, Helene Starks and others entitled, "Clinician-Patient Interactions About Requests for Physician Assisted Suicide" ( I found it to be a powerful narrative reminder of the importance of this therapeutic alliance.

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Katy Butler said...

What a wonderful dialog. Thank you. Totally agree, Liz -- autonomy is overrated in our "up by the bootstraps" society. Interdependence is easier for the dying in a context of deeper medical trust and more nursing support, which need to be rebuilt. I don't envy doctors struggling with these complex moral, emotional, and clinical questions. A whole new field for moral distress. I am not taking a position for or against. However I wonder about the use of the word "suicide," and how it shapes our moral thinking. Its overtones are clinical, pathological, theological, even criminal. It makes so much sense to use it to describe a physically healthy, temporarily distraught teenager jumping off the Golden Gate Bridge. But should the same word be used to describe a 72 year old with weeks or months left, in intractable pain from pancreatic cancer or facing death from ALS or glioblastoma? I don't know what the right word is, but I think a word other than "suicide" might open up thinking beyond categories that don't fit so well. I so appreciate Geri-Pal, and the deep compassion and moral responsibility everyone is bringing to this new clinical dilemma.