The beginning of the end

Last week the Institute of Medicine released their report Dying in America and it received a fair amount of press.  I’ll be honest- I waited a bit to write about it not to revive any furor, but because I was processing some of my own experiences as a critical care surgeon who is frequently involved in end-of-life discussions.  When I am working in the burn unit, where I spend the preponderance of my clinical time, it is rare for us to be able to send patients home for their last day or days; I have been able to do this only a handful of times in my career, and it always leaves me with a mixed sense of loss and gratitude.  When I am working in the oncology ICU, a place I spend about a month out of my year, I often find myself wishing we had the opportunity to help people plan a kinder end to their story than what we are able to give them.  Unfortunately, by the time many of them get to us there is painfully little we can actually do to help them.

This leads me to where the system is coming up short, time and again, and in a way that impacts both of my areas of clinical practice.  We aren’t having the right conversations at the right times.  As a medical student and resident, I had no formal teaching on DNR orders, POLST forms, or communication with families about goals of care.  These are skills I had to pick up on the job, watching those around me, praying to have some good role models from whom I could adopt practices.  But, again, if I am the one having these conversations with patients in the ICU- or with their families- I’m not having it at the right time unless it’s a review of existing plans or wishes.  These are conversations that patients should be having with “their” doctor, be it a primary care physician or a specialist.  These are conversations that families should be having so no one has to guess what Aunt Ethel would want if she were in the hospital on a ventilator and requiring dialysis and a feeding tube, with little hope of recovery to her twice a week golf game and bridge club.  These are conversations so that you and I and the people we love the most can write the end of our own story in a way that makes the most sense to us, whatever that is, and have it honored.

I’m not saying all of this in the interest of saving money, though the maze of end of life care as we currently practice it in the US is a tremendous drain on healthcare dollars and hospital care days.  The hyperbole of “death panels” was a terrible straw man, when all that was really wanted was for physicians to be reimbursed for the work they do on end-of-life planning with their patients (something that is both time-consuming and sometimes emotionally draining).  Educating the next generation of physicians in palliative care and hospice, and the important roles that they play for patients, is critical.  Quite simply, this is something that we can and must do better in terms of education, quality of care delivered, and public policy.

Establishing goals of care for a patient based upon their wishes is arguably one of the most important things that we have the opportunity to do.  Here’s to hoping that the IOM report will spur us towards a system that supports doing it better than what we have now and in a way that truly honors the dignity of each of our patients.  That’s the very least that they deserve.