Sunday, April 7, 2019

Getting Advocacy Right

by Christian Sinclair (@ctsinclair)

An article about end-of-life care has been making the rounds this week by Haider Warraich, MD from the online magazine Vox. Titled, "The way we die will be considered unthinkable 50 years from now", it is part of a series asking 15 experts to think about how the actions we take now will look like errors in 2070. I have seen people on Facebook and Twitter share it with quotes pulled or superlatives attached. Yet when I read it, I didn't feel the same enthusiasm; I felt frustrated.

When you read the article, key points seem to be very supportive of palliative care and hospice efforts, but on closer inspection of how our field is being presented by a cardiologist, he simply reinforces the same misconceptions of what good end-of-life care can be. I will illustrate some examples below, but first, it may help to understand the writer of this piece, Dr. Haider Warraich. He is a cardiology fellow in the heart failure program at Duke and has written a book, "Modern Death: How Medicine Changed the End of Life." He has published research on prognostication in heart failure and numerous opinion pieces in the New York Times along with other prominent online news sites. He clearly is very interested in end-of-life topics, and by his numerous pieces, he is positioned as an advocate for hospice and palliative care. Yet when I read his pieces, I am reminded of the physician or nurse who likes palliative care a lot, gets us involved early and often, but at certain times, there is a small but significant misunderstanding of what our role in a case may be. I am reminded of Stefan Friechsdorf's concept of 'pallilalia,' which he characterizes as when "repetitive absurdities are spoken about palliative care in general and the PPC program specifically, without anything being done to advance its development." I don't think Warraich is being absurd; I do find his writing to be earnest. But I am concerned his effort is potentially damaging.

Now that the scene is established, let's break down the article, and see why this messaging around palliative care is not as clear as it needs to be.

First, the anecdotes. Two anecdotes highlighting doctors ignoring patient's wishes; one from 50 years ago in which more aggressive care was given, and one recounting a story where DNR orders were placed on patients without patient or family knowledge. Both are awful stories but are not representative of health care today, and if that is being done in 2019, that should be reviewed by the hospital, the medical board and possibly courts. But the reader take-away is: "Don't trust doctors. They're sneaky and won't listen to you." Not a great starting point to a far more complex problem.

Other issues with the anecdotes are present. The 1st anecdote was published in BMJ in 1968, but refers to an overseas hospital, presumably not the United States. ¯\_(ツ)_/¯ The 2nd anecdote links to a 2004 book, instead of an original reference from...1984. THIRTY-FIVE YEARS AGO! Anecdotes from 50 years and 35 years ago do not represent the standard of care in 2019. I get the point was to tie to a historical look-back, but it just reinforces mistrust, which will come back a little bit later.

I'm totally great with the 3rd paragraph. No issues there. Good generalizable statements. But the 4th paragraph is where the messaging gets really muddled. Warraich's description of palliative care, aimed at a lay audience, is not correct and he repeats it back-to-back: "patients receiving palliative care, which is an approach that focuses on quality rather than quantity of life, can actually live longer."; "While the goal of palliative care is to help people with a serious illness live as well as possible — physically, emotionally and spiritually — rather than as long as possible..." When you look at established definitions of palliative care (AAHPM, CAPC, WHO, NHPCO, and others), none highlight an oppositional approach of quality vs quantity. If you are a palliative care or hospice clinician, who uses an oppositional definition for palliative care, you need to stop, because it doesn't help. Describe what we do. Do not define something by what is not done. Palliative care does not bake cakes, but no one would consider that as part of our definition. Palliative care is patient-centered care to improve quality of life by reducing suffering for patients and families. Done. Fin. And regarding the life-prolonging endorsement by Warraich, we should not be dangling that carrot, especially when the evidence is weak at best. As Drew Rosielle wrote,

I think we should be satisfied with the 'helping them have better QOL part.'

In the 5th paragraph, the lumping together of pacemakers and left-ventricular assist devices (LVAD) is problematic. Deactivating defibrillators (not mentioned in the article), pacemakers and LVADs all bring up unique aspects of ethics, cardiology management, and comfort. LVAD utilization is increasing, presenting some ethical challenges that medical teams, patients and families are able to work through with good communication. Guidelines reinforce the early integration of palliative care for people eligible for LVAD therapy, and this rollout has been helpful to balance technology advances with patient-centered care.. That would be great to highlight, but Warraich does not. Instead, he cites a Sep 2017 study that shows 13% of cardiologists believe deactivating an LVAD is a form of euthanasia or physician-assisted suicide, but in the Vox piece he writes, "Many patients with terminal illnesses who want to deactivate these devices find resistance from the health system, since some continue to equate deactivating them with euthanasia." [Picks jaw up off floor]. When you bring up a deeply complex ethical and social issue like euthanasia in the first 5 minutes, you instantly polarize your readership. Are there times when it is important to discuss topics like requests for hastened death? Sure. But not right here, not right now. Just bringing it up in this nonchalant way, Warraich essentially weds the issue to palliative care to the reader.

OK, 6th paragraph, I'm getting a little fatigued at this point, but let's keep going! Warraich brings up the name issue - palliative care freaks people out. But as we also saw this week, palliative care is the fire department, not the fire. In citing two articles about patient and physician association of palliative care with end of life, he again inextricably ties together that palliative care *is* all about end of life, even though he ultimately argues for a concurrent model of palliative care. He also links to an article and the accompanying editorial about teams changing the name 'palliative care' to 'supportive care', and implies when people think about palliative care they have every right to think 'they will be abandoned.' To a public reader, this whole paragraph boils down to, "Many patients and doctors think palliative care only means end-of-life care. Pretty scary to think about these beliefs I am reinforcing. Then doctors change their team name so you will not be scared, even though you should be scared because I already reinforced your beliefs. Remember when I started off this piece saying doctors are sneaky?" Ugh, I feel like this battle will never end. But I am encouraged because I know this is not what I and many other palliative care teams see everyday. While this would never be published as research, there are many programs including my own that have grown year over year at a steady pace, and they never changed their name.

As the piece reaches the conclusion, Warraich undermines his own argument of palliative care involvement and cites the 2016 JAMA 'Fast-food style palliative care' study which was critically panned by Alex Smith at GeriPal. The Vox piece emphasizes that palliative care increases PTSD symptoms in family members. Warraich uses this to advocate for better discussions led by the primary teams, a noble goal that many palliative care teams are working towards in their institutions. But, if you read Alex Smith's analysis of this study on GeriPal, you can see this study was not full-contact palliative care as practiced in many hospitals today. If anything, this study should support early involvement before a crisis, more funding and collaborative management by primary teams and palliative care teams. I appreciate the shoutout for lack of a palliative care workforce to handle these situations, but if he is saying we cause PTSD, why would anyone want more palliative care clinicians?

The conclusion finishes a bit stronger except for the line, "End-of-life care is not just palliative care’s business," which again seems like an advocacy line, but instead is a step backward. This backfire effect is illustrated well in a paper by Nyhan and Reifler who looked at messaging around the religious beliefs of President Obama in 2009. The backfire effect is essentially when someone's strongly held beliefs are challenged by opposing facts, their original beliefs are paradoxically strengthened. When we deny misinformation, it reinforces the misinformation. Therefore we should focus on the positive/truthful associations. So given that I addressed a lot of misrepresentations in the Warraich Vox piece, I also plan to publish an alternate universe version in the coming days.

So my take-home points for you as a potential advocate for palliative care, hospice, or just better health care in general:
- Highlight the positive impact of our work
- Do not define what you do by telling people what you don't do
- Read articles before you share them on social media
- Don't share articles that reinforce poor representation of our field

Christian Sinclair, MD, FAAHPM, is a palliative care physician at the University of Kansas Health System and editor-in-chief for Pallimed. He hopes to one day write a book like Dr. Haider Warraich has already done, and appreciates all non-palliative care clinicians who advocate for better end-of-life care. He also recognizes that his own writings in the past, present and future may not always best represent pallative care and is open to feedback.

Multiple times in this article 'end of life care' is referenced, but it should be written as 'end-of-life care.' This second way demonstrates that 'end of life' is being used as an adjective to describe the type of care, instead of the stopping of 'life care.' That one is on the editor, not the author.

The other one being: check the URL. The URL for this article includes 'end-of-life-palliative-care' essentially linking those two as inseparable for anyone who bothers to look at the actual link. That is on the website, not the author, but if we are trying to change how palliative care is presented, small things like this add up.

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