Friday, July 19, 2013

When the rulebook has no remedy

@BradleyFlansbau, Brad Flansbaum, over at The Hospital Leader offers thoughtful comments about the ambiguities in near-death situations in hospitals. He points out the inherent flaw with advance directives:

You realize that even with the indecision of how our country will manage end of life care and the calls for greater engagement from our citizenry, no piece of paper will resolve certain impasses.

I will offer the following:

Advance directives simply promise more control over future care than is possible. We also cannot predict our preferences as our health states evolve and possibly worsen.

So true, and Brad's article is an excellent exposition on the topic, presenting two "bookend" cases on the matter.

But, let's recall the work of Bernard J. Hammes, director of Medical Humanities and Respecting Choices at Gundersen Lutheran Health System, who edited the book, Having Your Own Say. In my review of the book, I said:

If I were to simplify the theme of the book, it is that advanced directives (ADs) are insufficient when it comes to end-of-life planning.  Drawing on the experience of the GLHS and other places, the book demonstrates the importance of an ongoing process for advance care planning (ACP).

So, while nothing can undo the conclusions reached by Brad, the insight offered by Hammes is that we can at least do better in keeping our end-of-life wishes as up to date as possible.

Nonetheless, as Brad notes:

No advance planning can prevent a Mr. Brown or Dr. DeBakey from presenting to your hospital.  We can only write about their (and our) plights to provide comfort for the times we look in the mirror for solutions.  When the rulebook has no remedy and the right path seems more like the roll of a dice than an ordered prescription, we hope for the best and absorb whatever lessons these unfamiliar cases can teach us.

This kind of  intellectual and emotional modesty is, in my mind, the sign of a great doctor. In contrast, s/he who is overly confident in these matters is delusional and empathetically deficient.


akhan13 said...

Ah- advanced directives. Much like religion, a conundrum that will rule over our lives (and deaths) but will never be definitively answered by its very nature; just given our best shot. I understand that there will be many opinions on this issue, but all I can say is that these are the toughest decisions our providers, patients, and patient's families ever have to make. And we are not alone; none of us ever know for sure. The best we can do is to remember that we are participating in a choice most people never have- most people don't have their family member's deliberate the end of their life, they pass in cars planes, beds and battlefields. This doesn't make it any easier.

Anonymous said...

There is no easy answer here. Your post brings to mind my experience sitting in the emergency room with my 90-something mother, me holding her advanced directive which essentially made her a DNR, while the doctor said to her, "if your heart stops, do you want us to try to resuscitate you?". Mom's reply: "I'd like you to at least try."

These things sound good in the abstract, but it takes courage to stick to them when the chips are down.

nonlocal MD

Howard said...

There is a recurring urban myth in Emerg Med circles of patients with “DNR” tattooed on their chest. After the Globe and Mail – Canada’s “national newspaper” published a story confirming at least one person who had such a tattoo; I got a letter to the editor published that said; “After a career in emergency medicine, if I was going to put any tattoo on my chest it would read; “Use your best judgment.”

I think the whole end of life issue has been distorted by well meaning lawyers and ethicists who have valid perspectives but are no more entitled to speak for patients than anyone else. Physicians went from being paternalistic to defensive and the result is that we ask patients and families what they want instead of giving advice. The result is, many families are left with guilt as they feel they made the decision to withdraw care, or, having asked, the doctors are now stuck with an answer they didn’t want to hear and don’t agree with (“Do everything – dad’s a fighter!”).

In my favourite South Park episode on the Terry Schiavo case Cartman argues in a court that Kenny’s feeding tube should not be removed as that would be “playing god”. The angels watching scream (but can’t be heard) – “NO! You played god when you put the tube IN!”. said...

Howard, yours is the best comment I've seen on these debates: "Physicians went from being paternalistic to defensive and the result is that we ask patients and families what they want instead of giving advice."
A mentor also noted that what was at first a very special experimental attempt for cardiac patients (CPR) is now seen as an entitlement, not an option, for all patients.

Anonymous said...

Advanced directives require that a family (or unit of people constituting a family) sit down and discuss what's really important. If the underlying philosophy driving a person's beliefs, attitudes, and hopes for life is understood, then making difficult decisions is not easier, but those difficult decisions are softened by the "fact" that survivors acted in accordance with some "ground rules" no matter how loosely we define them.