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.