A heck of a personal story… “A Handshake” from JAMA

I try to read JAMA’s A Piece of My Mind column whenever I have the time.  The column features narratives about a wide variety of topics, but they’re usually patient stories, ethical issues, or reflections about the practice of medicine.  The August 7, 2013 edition of JAMA has a wonderful narrative by transplant surgeon Dr. Kenneth Woodside entitled “A Handshake” where he evaluates a patient for transplant eligibility.  His eyes widen when he reads in the social history the simple word “Tortured”.  Kudos to Dr. Woodside and his patient for sharing the story.

Handshake

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Why the Bipartison Care Planning Act 2013 is Exciting

In January 2013, I was fortunate enough to not only to attend C-TAC (the Coalition to Transform Advanced Care)‘s National Summit, but to also present my video piece, A Biker’s Heart, featuring the incredible true story (from Last Wish) of Bill and his wife and caregiver Nancy, as they fought against all odds to combat Bill’s devastating heart disease.  When I originally told Bill his story was going to be displayed and honored at a National Summit in Washington, DC, his response was simply “Maybe it will do some good”.DSC_5086

During the Summit, I listened to a bipartisan panel of three senators, Senator Isakson, Senator Warner and Senator Whitehouse, discuss the urgent need for awareness, reform and legislation surrounding the realm of advanced care planning and end of life care in the US.

Just six months later, Senators Isakson and Warner have reintroduced the Care Planning Act which is designed to help Americans make informed choices about their health care.

The term “patient centered care” is ubiquitous in end-of-life, advanced care planning and palliative care circles.  It is a highly sought after healthcare model that is highly lauded in social media and by many clinicians and advocates.

However, in my experience, patient center care is something clinicians and patients yearn for, yet seldom achieve, for various reasons, including lack of time and resources.  To truly achieve patient centered care, physicians need to do more than just ‘talk about it’ as a gold standard.  Yet, it seems many, if not most, physicians are unable to practice what they preach due to the unfortunate limitations that plague implementation of most good ideas: time and money.  One of its many important facets is that the Care Planning Act establishes reimbursement for physicians who practice the gold standard of patient centered care with interdisciplinary health care teams.

Even more exciting from my viewpoint as a practicing intensive care physician and end of life researcher, is that the Act charges HHS to develop quality metrics that will actually measure and hopefully assure congruence with a patients’ stated preference.  For me, this idea is of monumental importance.

Let’s backtrack for a moment to the Patient Self Determination Act of 1990 which mandated that hospitals receiving Medicare reimbursement document a patients’ advance directives upon admission, give the patient information regarding advance directives or allow them to decline.  This manifested as checkboxes that admission clerks complete as patients are being wheeled into emergency rooms- or as one page in a stack of admission paperwork completed by patients as they are admitted to the hospital.  Seldom does this paperwork result in a candid discussion between patients, families and/or their physicians.  Simply put, the PSDA did not improve the quality of end of life care in this regard. If true quality metrics were to be developed, then the Care Planning Act of 2013 has a hope of making a difference.

-Lauren Van Scoy, MD Colorheadshot

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Paula Span’s A Novel Way to Document End-of-Life Preferences

Although I haven’t yet had a chance to read Dr. Lakin’s research study from JAMA referenced in this article (but I certainly plan to!), this summary from Paula Span provides food for thought.paulaspan

Here is a comment I posted, but is still waiting for approval from NYTimes.com.  But here it is in the meantime:

Thank you Ms. Span for another article on the extremely important topic of advance care planning. I work in the ICU and in my experience, very few patients have documented end of life preferences when they arrive in the ICU despite having chronic or even end stage diseases for many many years. This has to change!

Paula Span, NYTimes.com, The New Old Age

Although I haven’t yet read Dr. Lakin’s research study, it strikes me that it’s not important not only to encourage doctors to document an end of life care plan, but also to make sure that it is accurate and not simply a default, which is often “do everything”.

There are some great resources out there for patients and families to use to embark on these difficult conversations. Personal stories are a wonderful way to get information, and the work that the Conversation Project does is excellent. Also, the Last Wish Compass (www.knowyourwishes.com/Compass.html) is a brief discussion guide that helps patients consider important issues to communicate with their families and doctors. Dr. Lakin’s work is exciting in that it suggests increased awareness does make a difference.

-Lauren VanScoy, MD

 

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“Everyone on Medicare should have their end-of-life preferences clearly spelled out…”

Here is a nice piece from Ezra Klein in the Washington Post called “Can we please talk about death like adults?” with a great ending statement:

“And so seniors living out their final days get tortured by the medical system because everyone involved was too afraid to talk about death — and the occasional ugly realities of end-of-life “care” — before it was near.”

Read the full article here:

ezraklein

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