Friday, June 10, 2016

Aid in dying: a wedge issue for palliative care

by: Alex Smith MD, @AlexSmithMD

I've written before about my evolution in thinking about aid in dying.  How, while I was in medical school, my parents were very in favor of legalizing aid in dying in Michigan after my dad was diagnosed with brain cancer.  Also while in medical school, I read two books that further inspired me to go into palliative care: A Midwife Through the Dying Process by Tim Quill, and Dying Well by Ira Byock.  These two authors and luminaries of palliative medicine also happen to be leading voices at opposite ends of the spectrum on the issue of aid in dying.  These readings implanted an early ambivalence about legalization of aid in dying.

Later as a palliative care physician in training I became even less enamored with aid in dying, as all the patients I cared for who expressed a wish to die stopped making such requests with multidisciplinary attention to reversible sources of suffering.

Many in palliative care have worked hard to distance themselves from the "death doctor"  perceptions.  Any association between palliative care and physician aid in dying is concerning to many of us who have tried to dispel those perceptions.  Some in palliative care, like a mentor in medical school, are so emotionally invested in being opposed they leave no air in the room for debate.  For others in palliative medicine, the opportunity to provide the service of aid in dying is one of the reasons they were inspired to go into the profession.  Not that it's an ennobling act, but that it is a way to provide relief of suffering, one of the most basic reasons we went into medicine in the first place.

But let's be honest: this can be a wedge issue for our community.  In a community that has been so unified over it's mission, nothing divides us as deeply as this issue.  I've been in the heated debates.  I've heard the whispered, "How do you feel about...?" 

Aid in dying is an issue that has received far more attention than it deserves relative to the needs and desires of the overwhelming majority of patients living with serious illness: pain and other symptoms, treatment of spiritual suffering or existential distress, and access to hospice and palliative care services.  Put another way, physician aid in dying has only been a major issue primarily for a very small subset of highly educated white men.  I have serious concerns about laws created primarily to help best off groups.

For years, my position had been to stick my head in the sand and ignore physician aid in dying.  Hope it went away.  Perhaps because I'm a middle child - the peacemaker - all this conflict among mentors I respect deeply is frighteningly uncomfortable.  Well now I can't ignore it.  It's legal in California where I practice (though not at the VA hospital where I work).

Our focus has to shift.  Palliative care providers not just in California but around the nation need to harness the momentum of this moment to unify around a common approach to responding to requests for aid in dying. An approach that doesn't start with "yes," or "no," but "why?"  An approach that includes referral to palliative care for many, most, or perhaps all patients.  An approach that recognizes the need for palliative care services where none currently exist.  An approach that prioritizes research into the impact of legalization on vulnerable groups.

We're a mature enough field that this issue shouldn't divide us.

As of yesterday, physician aid in dying became legal in California.  Coinciding with this moment, this is the third in our series of posts about physician aid in dying, prior posts are here and here.  For those who missed it, there's a nice discussion going on in the comments about the first post, that I'll paste in part below:

Diane E. Meier said...

Hi Elizabeth- thank you for this superb analysis. I think the meta-message of public policy enabling aid-in-dying is an explicit endorsement of the "You're on your own" thematic threads in American society and manifests a societal acceptance of the very low expectations Americans have come to have on our health care system. It's as if we (policy makers and the medical profession) are saying- "you're right to be afraid, members of the public- we can't address your suffering, so we're going to make it easier for you to end your life." It reinforces the meme that we can't rely on one another for care and support, that dependency and need for care is shameful, and that the medical profession has no role/responsibility in alleviating misery. This is why I think palliative care professionals should be outspoken in their opposition to such legislation, and instead be loudly calling for a culture (and a health system) of care.

Gregg VandeKieft said...

Thanks for a thoughtful and thought-provoking post, Liz.

One thing keeps nagging at me though: is this a false dichotomy? That is, need it be either/or, or can it both/and? Practicing in WA for an employer that opted out of our Death With Dignity Act (so as a non-participating physician), I've had many conversations with patients who inquire about physician-assisted dying. Very few have followed through, but those who did received excellent palliative care and all were on hospice. They made an informed choice, based on their values, goals, and preferences; it wasn't about inadequate symptom control, system failures, or baseless fears. And my anecdotal experience mirrors extensive data from WA and OR - the abuses and concerns raised in opposition to the laws have not materialized in a tangible way. CA is certainly more diverse than OR or WA and has a much larger population, so things may play out differently, so I don't assume the WA and OR experience will be exactly replicated in CA. Perceptions may also differ since the OR and WA laws were the result of citizens initiatives approved by a substantial majority of voters, rather than a legislative act like CA's End-of-Life Options Act.

The availability of palliative care remains my major concern - allowing PAD to anyone without access to excellent palliative care is very problematic. We must also be cognizant of the optics as palliative care professionals - after working so hard to dissociate our discipline from "death panels" misperceptions, we should be wary about how participation in PAD may affect our "brand."

Of course, the law is upon you now in CA, regardless of our philosophical, political, or moral viewpoints about its rightness or wrongness. It seems the best next steps will be advocacy for excellent palliative care for all Californians, and training physicians at the point of care how to respond to inquiries about PAD in a manner that opens up the sort of rich dialogue that fosters the best care possible. The conversations that follow these inquiries are almost always profound, and the overwhelming majority do not culminate in PAD, so we need to focus on how to help all those who inquire.

Thanks again for your post!

Liz Dzeng said...

Thank you very much, Diane and Gregg for your very thoughtful comments, and for engaging in this dialogue. The experiences Americans encounter in health care are diverse - influenced by socioeconomic status, geography, health literacy, race, gender, ethnicity, etc. I am very glad to hear that the patients you've encountered have had excellent palliative care and that the majority of them have had the resources and ability to make informed decisions supported by palliative care. This is no doubt due to the excellent service you and your institution have provided.

I agree that for those who have access to palliative care and have made that informed choice, it is appropriate and the choice is one that I completely support. I believe that there are aspects to the dying process such as a perceived lack of control and changes in personhood that can not always be addressed adequately, and for those people, PAD might be the right choice. However, the law has been applied to all Californians, and not just those who were privileged. I am worried about giving choice over care to those who aren't so lucky.

I also wrote this blog from a more societal rather than individual perspective - that the rallying cry for choice comes, as Diane described, from a rather neoliberal attitude that choice is the only way to resist the tide of overly aggressive care at the end of life. Which I think only puts a bandaid on that larger problem.

I completely agree with you, Gregg, that ensuring availability of palliative care is integral to a moral response. I recognize and understand palliative care's hesitancy to associate with PAD. However, I feel that to do so would be a disservice to those who are facing an uncertain and scary future as they near the end of their life.

I have mixed feelings about the law, but as we've all stated, the law has passed, and so I believe that this is the time to think about the patients who are contemplating PAD and in need of palliative care services and support rather than as Gregg say, how PAD might affect the "brand."

We have two populations that now have access to PAD. Those with access to palliative care and those who don't. As Gregg points out, choice and care doesn't need to conflict for those with access to palliative care. For those without access, I worry that they have been given an unempowered and potentially unethical choice. I believe now is the time to put the patient first and provide the care and guidance that so defines the palliative care profession, so that the great numbers in the latter category can move into the former.


Maria Carney said...

Alex, Thank you for describing the wedge so well. As a physician, who has advocated for the most vulnerable in both health care and public health worlds you describe the concerns I, too, have for patients and families who may be diverse in beliefs, thoughts, abilities and access to care. What is clear and not in conflict is the vast amount of suffering patients, families and caregivers face regularly. Unfortunately and possibly an unintended consequence of the Aid in Dying discussion, is that the need to minimize suffering in health care (physical, psychosocial, caregiving) is not being addressed. Lets focus attention on improving quality of care to avoid suffering by expanding specialties and programs that promote palliation (Palliative medicine, geriatric medicine, chaplaincy, social services) and create metrics that measure how systems are addressing the avoidance of suffering and minimizing abandonment by providers and systems.

kathy kastner said...

Maria, thanks for this perspective. I am a patient. Well, a person, actually, managing my health and its quirks, as well as can be expected.

I am also a Palliative Evangelist. I talk about and talk up the Palliative Approach and Philosophy whenever I get the chance. This, the result of virtually learning via Pallimed, Geripal, #hpm etc. I shout from the rooftops: Would that palliative care was universally accessible, and consistently practiced (or, practiced consistently) Which I believe echoes your sentiments.

So, at the risk of being thrown to the lions by the very people who have guided me in my quest for ever deeper end of life understanding:

As loud and insistent as I am about Palliative care, I am quieter on my other personal belief: Medical Assistance in Dying (worded thusly to reflect future involvement by professions other than doctors.)

From this patients point of view I see assisted dying as a win, win:
1. In asking for assisted dying, resources are allocated: help is on hand, where help was impossible to find before. - eg psychological assessment and subsequent treatment. What a win for desperate patient
2. In initiating the request, a microscope descends - picking up things like elder abuse. What a win for the elder.

In Andrew Denton's 'not dead yet' excellent explorations, he interviews a psychiatrist who helped forestall the assisted death of a young woman by diagnosing her properly. "Everyone wants to live," says the doctor, "Just not the way they're now living."

As a patient, I advocate for both. Sometimes - and I believe only a very few times - palliative cant relieve suffering sufficiently for the patient. My message is they're not mutually exclusive:

I see the assisted dying 'movement' helping move those good palliative forces forward

Kathy Kastner PCE (Palliative Care Evangelist)

Unknown said...
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Anthony Back said...

Alex, Diane, Liz, Gregg, thanks for this thought-provoking dialogue. I also see an issue in the public discussion related to autonomy, but slightly distinct: the issue of who initiates and controls the discourse about dying, and what that discourse is about. In the past, discussion of dying has been (and still is, often) initiated and managed by physicians (though sometimes other PC clinicians now). The patient must ask "am I dying?"; physicians are encouraged, in certain situations, to pronounce that 'you're dying'. I see the rise of medically hastened death as a public conversation as the creation of a new story/mythology/ritual about dying: you take it on, take it into your own hands, and create a very distinct event around it--and i would mention that i have seen some pretty amazing instances of patient-initiated life closure that were directly related to their hastened death. The patients i have consulted and and cared for in Washington have almost all acted pre-emptively, and their behavior has led me to feel that the inclusion of this as an 'option of last resort' isn't quite correct--these patients have almost all acted before they experienced what they dread.

I concede that this is a rather 'meta' comment--but my reason for pointing it out is that medically hastened death exists at the fringe yet reflects something important in the culture at large. I certainly hear Diane's comment about low expectations, and yet i think there is something more about our own discomfort with the messiness, finality, and sadness of inhabiting a human body. Yes, the care system should do better--and there are also patients who are really afraid of being that vulnerable, and don't really want to be cared for. That is the part i want clinicians to pay close attention to when they are talking to patients. I am not sure if medically hastened death is better. But i get that there are a lot of people who want to discuss it, and a very small group who are quite determined.

Kristen said...

Thank you for your insightful, professional opinion. I am a firm believer in physician assisted suicide and I am not afraid to say it. Having worked in health care for over 15 years in many different capacities, I have seen a lot of death. I am presently a Licensed Nursing Home Administrator in the State of Maine working on my Doctorate. I firmly believe people need to be more educated in hospice,pallative care and the option of physician assisted suicide. Thank you for bringing this subject up. Wonderful article.


Kristen said...

Sorry I would also like to add that I have been diagnosed with MS 14 years ago. If, and when, the time comes that I am completely relying on others to do everything for me I want the option to be able to medically end my life should I decide to. I know this is beyond hospice and palliative care but it is also another important topic.
Thank you,

Thoughts and wonder said...

Here's the thing: It's not or should not be an either Palliative Care or Medical Aid in Dying. We need both! Suppose I check myself into a PC unit where I hope to die a peaceful death. As a slide down the slope towards the inevitable, panic strikes and I find waiting to die completely intolerable. The fact that I chose to put myself in a PC unit should not mean I could not ask and get a physician assisted death if/when I want it. I compare it to driving a car with an airbag. I have never used one but derive solace from the fact that if all hell breaks out, it will be there for me. Who am I? I'm a 5 year experience palliative care pet therapist volunteer and palliative care caregiver coach.

Alex Smith said...

Thanks to all for these comments. This comment from Tony Back hit home for me, "there is something more about our own discomfort with the messiness, finality, and sadness of inhabiting a human body." If we set aside statements about aid in dying for symptoms (because they should be well treated)or depression (because it too should be well treated), we are often left with existential distress. And some patients do not want more help with that particular form of suffering. Attention to concerns of a minority or "fringe" group is important, as long as it doesn't drown out or overwhelm high priority concerns for the majority.

Well there you go, that's why I'm deeply ambivalent.

Laura Petrillo said...

I was also struck by Dr. Back’s comments. I hear you on the idea of an emerging “fringe” use of PAD to give patients the ability to pre-empt a dreaded outcome and personalize their life closure, as opposed to the traditional idea of using it as a last resort for extreme suffering. I can imagine how it could be empowering for a patient to have that kind of control and how such death events could be imbued with a lot of meaning. I think this issue really hits a nerve with people because of that wish for ultimate control.

I think what I struggle with the most is, why confine that privilege to patients with a terminal illness? There are a lot of things that people dread outside of a six-month prognosis— if we say this is an acceptable, doctor-facilitated solution to the problem of nearing death, why not widen the net to include older patients who are tired of living, or patients facing a slower demise from illness, or who have difficulty adjusting to a new, lifelong disability and want to write a different ending to their story? If the thing of utmost value in this exchange is giving patients control over their fate with regards to timing of death, it feels arbitrary to restrict to patients with an estimated 6 months. I appreciate that OR and WA have been able to hold that line, but Belgium and the Netherlands haven’t. Maybe that’s where the US wants to go and the fervor around this issue represents that— then the main thing we need to decide as physicians is if we want to be the facilitators of that shift or not. Sounds like to a degree, it’s already happening.

And related to Dr. Meier’s comment that “it reinforces the meme that… the medical profession has no role/responsibility in alleviating suffering,” using PAD to pre-empt patients’ imagined, suffering-filled deaths definitely reinforces the idea that all deaths will necessarily be gruesome and messy unless we pre-empt them. The propagation of that myth makes this option seem relevant/necessary to more people.

Dan Matlock said...

Head firmly in sand - hoping Colorado doesn't pass this law forcing me to have an opinion.

This is much more nuanced than just being about suffering. It gets to our societies disparate opinions about life...shoot...head going back into the sand.

Anonymous said...

As moving and true as everyone's reasons for being 'pro' and 'against' are, they are just words when sitting across from a patient who really wants a prescription to end her life, or a patient who considers the practice to be totally unacceptable and cares what her doctor thinks. I've sat in both those seats, sometimes both on the same day.

If I take a position for or against, I find myself opposed to some of my patients. Shouldn't the goal of our field to be to find a stance that allows us to align ourselves with all our patients?

Why do we take positions and what are the consequences? One of the consequences could be that we think we've got it figured out-we know what to do and how to respond and we can stop worrying about it.

In all instances of hastening death, I don't think it serves us to feel resolved, or reassured--I think there is value to finding it deeply unsettling every single time.

Thus, I think ambivalence is easily justifiable. Having been involved in many of these cases, albeit not as a prescriber, I find myself really wanting these patients to get their prescription, and also really wanting them to not feel the need to take it. I can hold both views strongly at the same time. To hell with studied neutrality--studied ambivalence! Perhaps Alex or someone better with language can come up with a better name.