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Doctors "Showing Others the Way"? It's Hard for Us, Too

Posted by Dr. Lachlan Forrow  December 2, 2013 10:04 AM

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The headline in the NY Times -- "How Doctors Die: In Coming to Grips With Their Own Mortality, They Are Showing the Way for Others" -- suggested that maybe doctors are finding it easier than most other people to make sure they are cared for at the end of life the way that they would want to be, including being at home, rather than in an ICU, if that is their preference. 

Instead, what the article made clear is that even for doctors, it is far too hard.

Early on, the article sounds a note of hope:

[Doctors] have a clear advantage over many of us.  They have seen death up close.  They understand their choices, and they have access to the best that medicine has to offer.

But then it became clear that even for doctors, some of the most basic things they need in their care are hard to get, starting with simple prognostic information. 

One of the physicians profiled is Dr. Andy Billings, one of the national pioneers in developing the field of palliative care, and also a longtime master teacher at Harvard Medical School on doctor-patient communication.  (I know this firsthand, as one of his admiring students not only years ago in medical school, but repeatedly in the decades since then.)

It is hard to imagine anyone with more experience and skill than Dr. Billings in talking about what to do in the face of serious illness.  It is hard to imagine anyone for whom it should be as simple and straightforward to obtain the basic information needed to develop a truly patient-centered plan of care.  

And yet even for Dr. Billings, it has been hard:

"As a doctor, you know how to ask for things," he said.  But as a patient, Dr. Billings said he had learned how difficult it can be to push for all the information needed.  "It's hard to ask those questions," he said.  "It's hard to get answers."

But why should it be so hard?  Why should a patient ever have to "push" for the information s/he needs?

Part of the reason, the article goes on to explain, is the continued perversity of our payment systems.  As Dr. Joan Teno, a leading expert on end-of-life care at Brown University, explains:

"We pay for another day in I.C.U....But we don't pay for people to understand what their goals and values are.  We don't pay doctors to help patients think about their goals and values and then develop a plan."

In Massachusetts, clinicians will soon be required by law to offer counseling about end of life options to all patients with a "terminal illness", defined as a life expectancy of six months or less.  But mandating something obviously doesn't guarantee that it will happen, much less happen well.  Especially if doctors are not paid for the time it takes to do it well.

And yet, it IS possible to do this well.  And when a plan of care is solidly anchored in a well-informed patient's goals and priorities, it is possible for the end of life to be just the way the patient wants.  The article ends on a positive note, with the experience of Dr. Elizabeth McKinley, a 53-year-old internist from Cleveland, who had battled breast cancer for 17 years, but had finally had enough of fighting for longer life, and with her family and doctors fought instead, successfully, for a different goal -- making every remaining day as good as it could be.  

And at the end, the article explains:

The front door at Dr. McKinley's big house was wide open recently.  Friends and caregivers came and went.  Her hospice bed sat in the living room.  Since she stopped treatment, she was spending her time writing, being with her family, gazing at her plants.  Dr. McKinley knew she was going to die, and she knew how she wanted it to go.

"It's not a decision I would change," Dr. McKinley said.  "If you asked me 700 times I wouldn't change it, because it is the right one for me."

Dr. McKinley died Nov. 9, at home, where she wanted to be.

"Where she wanted to be."  

This shouldn't be complicated, and shouldn't be so hard.  It should be the way it is for all of us.
This blog is not written or edited by or the Boston Globe.
The author is solely responsible for the content.

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About the author

Lachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »

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