Here is an excellent interview with WBUR's Sacha Pfeiffer and Dr. Lachlan Forrow about the Massachusetts Expert Panel on End of Life Care report I cited below.
It is deeply disappointing that the newspapers in Boston did not cover this important report, one of the most thoughtful pieces of work in the health care field.
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6 comments:
I guess the story in Japan is overtaking every newspaper right now.
A very articulate and eloquent man with, also, a very mellifluous voice! I especially like what he said about holding the health care system accountable for having your wishes immediately available at the time the decision must be made. See my concerns about implementation in your earlier post.
As for your newspapers, I have come to expect nothing more from them; too busy chasing the latest sensational story. A real disappointment in a city so fine.
nonlocal
Not quite, Jason. Take a look at recent front page and inside coverage and see what else is in the local papers -- and then judge its relative importance.
I appreciate the positive feedback, but we have _lots_ more work to do -- as two pieces of evidence in coverage of our Report clearly prove.
1. WBUR's website
A clearly superbly-qualified reporter (Carey Goldberg, former NY Times Boston Bureau Chief), in an otherwise superb report, wrote:
"The panel also calls for the creation of an “entity” to oversee and evaluate the state’s efforts at improving end-of-life care. Now, that would be a death panel! But I guess we can’t call it that…"
Well, we can't and shouldn't call it that because it is explicitly designed to do exactly the _opposite_ of what people fear a "death panel" might do. I think it would be more accurate to call any entity designed to ensure that patients’ wishes are known and respected a "Life Panel".
2. Betsy McCaughey in yesterday’s New York Post: “Stop Telling Us Where to Die”
Betsy is credited, she says mistakenly (she says it was Sarah Palin), with coining the term “death panels”. She wrote yesterday:
“...A New York law, enacted last August and in effect since February, compels doctors to offer information on hospice and other end-of-life options to every patient diagnosed with a fatal illness….The Medical Society of the State of New York opposed the law, and many doctors are furious about it. But on Monday, a state-appointed "Massachusetts Expert Panel on End-of-Life Care" proposed that the Bay State consider copying the New York law...Helping terminally ill patients know their options is a best practice -- but the government shouldn't be dictating what is discussed between doctor and patient, especially not at the behest of an industry."
Based on her comment that "Helping terminally ill patients know their options is a best practice" it seems that Betsy, too, agrees with at least the most important thing that we recommend.
But the fact that at least two people have already misunderstood what we are recommending means that we weren’t as clear as we need to be. As I wrote to Betsy today:
"…Your column makes clear that your reading of our Report led you to believe (or at least worry) that our Recommendations are biased in favor of convincing more people to choose hospice. While I think that that is wrong, you are not the only one in the country who either does or will worry about that. So that just reinforces the importance of ensuring that as we move forward every single person can have justifiable confidence that they will be cared for in the way THEY would want, not in the way that someone else thinks is the "right way" for them…”
So there is still LOTS more work to do. We’ve hardly even started. This is important and urgent – it is the only issue in all of health care that one day will come up for every single one of us, and every single one we love (unless we die suddenly and alone). And so we need every single one of us doing everything we can, especially patients and their families, to push, push, push until the health care system gets this right, and proves through public reporting and serious accountability for "performance" that it is doing that. An absolute requirement is patient-centered metrics that don't yet exist, and the philosophy of President Ronald Reagan, whom I quoted yesterday in my presentation of our Report to the Massachusetts Public Health Council, which oversees regulation of every health facility in the Commonwealth: "Trust, but Verify".
--LF
Lachlan Forrow, MD
Beth Israel Deaconess Medical Center
Chair of Mass. “Expert Panel…” and its Report on “Patient-Centered Care and Human Mortality: The Urgency of Health System Reforms to Ensure Respect for Patients’ Wishes and Accountability for Excellence in Care”
Part 1
All,
In order to achieve a peaceful death, patient-families, that is all of we citizens, actually need to do something. "Something" is a range of things comprising a bit of study and contemplation. As the author of a book on the topic, I'll share what I consider to be the most important aspects.
1. Become familiar with how we die in a technological society. Joanne Lynn summarizes the 3 basic trajectories representing, essentially, cardiac, cancer, and cognitive failures. Each trajectory is well-known (to providers) and unique from the others: cardiac is characterized by repeat downward spikes and recoveries; cancer by a generally sudden decline, and cognitive by the long slow decline. Consider the dissemination of this knowledge as a transparency issue, for unless and until people can recognize where they or family members are on the pathway, they will be caught by surprise in the crucible of what may turn out to be a terminal hospitalization that by definition is the antithesis of dying peacefully (see point 6 below). This includes understanding how death unfolds in hospitals as per Sharon Kaufmann (…And A Time To Die).
2. Understand the nature of applied resuscitation technology. This is a huge aspect that providers remain mute about with respect to informing patient-families. Lay people involved in their first or second family members' demise think of resuscitation technology as exactly that: life-saving under duress. Clinicians know that there are 2 additional uses: standard operating procedure during surgery, and treat whenever providers deem it so. SOP is relevant regarding the suspension of DNRs during surgery (required) and post-op for periods ranging from 2-48 hours depending upon the institution. This is generally fine but undisclosed until a surgical release form is presented—way too late in a treatment plan to qualify for informed consent for patient-families who want anything other than full-bore treatment (the current default despite all what folks like us discuss regarding EOL choice). A full lay understanding also requires disclosure of first-responder constraints and certain facility policies with respect to dishonoring DNRs. MOST and POLST are designed to remedy some of these incongruities.
3. Clarify that the absolutely necessary step of creating a suite of what I call Power Documents, including advance directives (ADs) is nonetheless but a first step to provide oneself a safety net. Living with no power documents is like driving blindfolded. In fact, however, having ADs is to a peaceful demise like clear skies were to the Titanic: a false sense of security. The iceberg lurks below depths and it’s all to easy (and common) to crash into it in the crucible of an apparently sudden terminal hospitalization. Personal work around ADs is not in their creation but rather when interpreting and using them. ADs are a legal necessity and a midlife abstract starting point. ADs in advanced age are likely to serve as personal Constitutions.
Because this represents my body of work, I must include:
©2010 Bart Windrum and Axiom Action LLC. All Rights Reserved. Permission granted to quote short sections with attribution.
For more information see www.HospitalPatientAdvocate.com
Part 2
4. Recognize when heroic action really begins. Our default is to give zero thought to the matter, so when in the crucible of a critical hospitalization with terminal overtones we tend to hang on too long to curative efforts. I’ve been there—twice, with each of my parents. This is a helluva time and place to first deal with the nature of heroic action (I call it heroicism, a lesser form of heroism). If one considers the dying trajectories I mentioned above, it’s easy to observe—through felt experience—that heroicism begins years or decades earlier, when we first engage in cure for serious conditions. Just because mighty treatments are clinically mundane (heart repair) doesn’t mean they are non-heroic for the people undergoing them. My father’s period of heroicism began 19 years before he died, with his first bypass. This, in my ponderings, is a profound aspect of “doing something” to increase the likelihood of dying in peace. Understanding heroicism is basic math; choosing how to die is advanced calculus. Yet no one teaches or learns the basics, so of course we suffer, patient-families and clinicians, with almost every death.
5. Distinguish between suicide (the taking of a viable life) and patient-directed dying (Tom Preston’s most-apt phrase) or physician-assisted dying (Compassion and Choices’ phrase, less apt in my opinion although I understand the impetus for choosing it). STOP using the phrase “physician-assisted suicide” for devising and choosing a peaceful exit when terminal. Now, definitions of terminal may vary in terms of prognosticated time left (a highly inexact forecasting).
6. Here in America lay people give mental lip service to the iconic notion of independence but enable medical paternalism by refusing to do the work related to enabling their own peaceful demises. Actually, until citizens belly up to their own end of life bar we will require provider paternalism. Providers, under their own duress (they’ve seen hundreds of times what we first encounter and experience a handful of times) try to pick up our slack, and bless ‘em for their inclination. Here we have a terrible double-bind: providers know we all must talk, and feel the conversational vacuum so strongly that they are now having to take on the added burden of initiating The Talk. On the one hand, medical/ethical disclosure requires this—and I believe providers shoulder 51% of the responsibility to talk because they are more experienced than patent-families. On the other hand, patient-families (that’s all of us) actually have 100% responsibility to initiate the talk. After all, it’s our lives and deaths. By willfully denying every aspect of dying and death we present as grown babies. This spans the generations, from 20-somethings to 50-somethings to 80-somethings. So doctors’ double bind is that they’re dammed if they initiate the talk and dammed if they don’t. My heart goes out to them even as the slow burn of my experience of my father’s hospitalized demise continues to stoke all this, my personal patient advocacy work.
Because this represents my body of work, I must include:
©2010 Bart Windrum and Axiom Action LLC. All Rights Reserved. Permission granted to quote short sections with attribution.
For more information see www.HospitalPatientAdvocate.com
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