By Bart Windrum

First Posted at Hospital Patient Advocate on 9/12/2012

Bart Windrum, host of Hospital Patient Advocate

I find the nascent emergence of end of life (EOL) discussion in American Society welcome, dangerous, and alarming.

Maybe it’s just me, or maybe it’s because I’ve been thinking about EOL matters so much since 2004/2005 during and since my parents’ demises, terminally hospitalized, when my work took root. Maybe I should have anticipated. [The ability to anticipate; the root of successful patient advocacy, and so difficult to do.]

Maybe the topic is too big deep broad scary challenging, and maybe I ought to chill. Maybe American society can’t handle much. Or maybe things just progress step by step.

I see an arc taking shape, advising people that if they execute a living will and engage in “the talk(s)” with loved ones that these activities will result in dying peacefully (pretty much defined as not on life support). And people accepting that guidance as complete and sufficient.

These actions are vitally important and we all must do them. I see danger because the conversation doesn’t go further. That people exposed to these suggestions think that they cover the bases. This alarms me because I foresee thousands to millions of patient-families experiencing shocking demises made all the more shocking because they thought they’d done all that’s necessary to immunize their patient-families against bad EOL experiences.

Let’s distinguish between dying at peace versus dying in peace.

Living wills and family conversations are about dying at peace. That’s a feeling state and a place we aim for.

The trouble I’ve experienced twice is that myriad practicalities exist and emerge to interfere with advance plans. Dying in peace relates to learning about, understanding, and mitigating these practicalities—which include the procedural, ethical, legal, and persnickety. Dying in peace is the shape a demise takes from beginning to end; it requires strength and safekeeping to protect against intrusion by impediments to dying at peace.

Today, as best as I can tell, the EOL conversation is all about dying at peace—which remains a crapshoot without doing the deep work around dying in peace.

Patricia Salber MD, MBA (@docweighsin)
Patricia Salber, MD, MBA is the Founder and Editor-in-Chief of The Doctor Weighs In. She is also the CEO of Health Tech Hatch, the sister site of TDWI that helps innovators tell their stories to the world. She is also a physician executive who has worked in all aspects of healthcare including practicing emergency physician, health plan executive, consultant to employers, CMS, and other organizations. She is a Board Certified Internist and Emergency Physician who loves to write about just about anything that has to do with healthcare.


  1. Quick but important question. Tomorrow afternoon I am hosting a new show on the DC NPR affiliate in which this topic is going to be discussed. The concept of “The Big Fix” is to come up with solutions no one has considered and have a left-wing and a right-wing person react.

    The idea on EOL does not pretend to solve all the problems (and there will always be problems) but make things a bit easier for people who forget to complete their directives.

    Right now if you don’t have a directive, you get heroic measures. Directives are “opt out” . Why not have them be opt-in. Palliatve care unless you’ve requested more aggressive treatment. And of course opting in could be done anytime.

    But the point (besides saving a lot of money and needless suffering) is that 2/3 of people want to die in/at peace byt somehow only about 1/3 do. This idea might align those two.

    I’d love a return email from you in a timely way and maybe if you’d like to be called during the show that would be great

    • Hi Al, your link doesn’t resolve in an email so the best I can do is respond affirmatively here and via your idea submission form, where I left my contact info. From here if you hit my website any page’s footer displays my contact info too.

    • Al, btw, my mental response to default opt out directives is favorable and my gut response is unfavorable/scared, for I do not trust the system. I’ve had 4 contacts with it with direct family members: my parents’ EOLs; a sibling’s midlife curative event in which the outcome was fine but needless risk emerged and was kept afloat because—there’s no soft-pedal way to say it—for a 6 hour period as we proxies thought we were advocating staff just baldly lied to us about process; and my daughter’s brief ER visit ~8 yrs ago to my local community hospital which went ok/well. So what risk does a default not to treat carry for those who opt for treatment?

      A primary issue around EOL independence is how terminality is defined. I understand today’s legal/medical definition (although I have not research whether it’s formalized and if so what the exact wording is). It is evident that for those who subscribe to the notion of free choice and what I prefer to call “self-directed dying” (see Tom Preston MD)—I tolerate/accept “physician-assisted dying” and loathe “physician-assisted suicide”—subscribe to a non-mainstream sense of terminality.

      Lastly, I have just finished a new project in which I’ve developed a matrix of new terms (descriptors) that attempts to articulate a range of “dyings.” I had the thought one day that perhaps it’d be helpful were we all to have a range of non-euphemistic words for dying. I developed that range and will briefly present it at next weekend’s Partnership With Patients conference in Kansas City. If any reader here has suggestions for an appropriate journal to submit an article detailing this work, please advise. Remember that I’m a lay person, not a doctor.

  2. Pat: it’d be a great service if site readers could opt-in for email notification of comments to each article. I would not have known about Al’s interest and offer had I not linked to this article on my Facebook page and a follower’s subsequent comment—which was emailed to me!

  3. I love the at peace verses in peace distinction; says something very interesting about our society. Simply completing some paperwork and having a quick family meeting will not take one from at to in, and leaves a large chasm of ignorance. However, these basic steps do begin a journey that a skilled clinician can use to direct patient and family down a path towards quality and comfort of a more global nature. So often these conversations never occur at all, despite devastating and obvious medical events. Once the conversation begins there is an opportuity to guide all care along a palliative and peaceful path.


    • Jim, I think what the distinction says is that we have only just begun to begin a society-wide conversation about EOL matters. They’re complex, made all the more complicated by the likely need to advocate when hospitalized, in itself a huge undertaking.

      I hope you are among the skilled clinicians you mention. In my case (“thrice bitten, a zillion times shy”) part of what motivates me is mistrust of encountering that skill either at all or in enough time for it to make a meaningful difference. Also knowing what makes the “slippery slope” slippery and, ironically from a metaphorical place, how easy it is to get stuck somewhere on it.

      I will add that I have come to believe that dying is, and to see dying as, a citizens’ matter first and a medical matter second. I know that at this writing that’s a concept that almost no citizen has stopped to consider. In the absence of that consideration medicine has over time emerged and now places itself. I foresee the potential for a tug of war around who owns our dying, because if citizens do then medicine will have to engage, within legal and ethical bounds, on citizens’ terms; being adjuncts and assists to peaceful dying rather than leading the parade. So long as some patient-family ascribes to a limited definition of terminality a smooth weave may likely occur. Personally I find the current definition of ‘terminal’ too limiting to citizen choice.


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