BY EMMA JONES, MD

On February 10^{th, 2015}, PBS aired the Frontline documentary entitled “Being Mortal”. You can watch the full program online http://www.pbs.org/wgbh/pages/frontline/being-mortal/ as well as find other videos and education material on this topic.

“The two big unfixables are aging and dying”

Surgeon and bestselling author Atul Gawande introduces viewers to the challenges the medical profession faces when confronted with these two realities.  Frontline is a well-established documentary program whose mission is to find a good story and tell it well. In “Being Mortal” the stories are those of five patients and families facing the end of life, one of which is Dr Gawande’s own family. The stories are compelling and heartfelt and overall I think the show was well done. It is worth watching to get a better understanding of the current state of affairs of medical care for the seriously ill adults and the patient experience of facing your own death.  There are several very poignant moments that I really can’t do justice in words, you just need to watch to understand.  I’ll share a few of the quotes from the program that spoke to me and some of my thoughts on the program and subject matter.

“Hope is not a plan”

As a palliative care practitioner I was initially disappointed watching this program.  I was hoping to see some beautiful examples of how good palliative care is done.  Some of the conversations are really awkward. Most of the “lessons” seem so basic: don’t lie to your patients, ask patients what they want, people have goals other than just living longer. I wanted more.   However, as I watched it the second time, I realized that this is documentary filmmaking at its finest. It shows the world as it is, not as I wish it was. The truth is that palliative care is still on the fringes and that most patients receive the kind of care depicted in this show, or worse. The hope on the horizon is that this film may begin the conversation.  Atul Gawande is a master storyteller. Through this film and the book of the same name, he tells the stories of palliative care. We know that stories are the currency of progress and the conversation is just beginning.

“All the stuff you learned in medical school is a tiny little bit of what it takes to be a good doctor”

One thing everyone in the field of hospice and palliative medicine can agree on is that better education is needed at all levels. We need to correct the ironic truth that doctors are expected to be expert communicators but are never taught how to communicate.  Principles of adult education tell us that the first step is recognizing a knowledge deficit and being open to new knowledge.  In my opinion, this is the primary purpose of this film and book. If physicians around the country see this and say “wow I need to learn some things to be able to do this better” or a medical student watches it and says “I’m so scared to even think about my patient dying, how do I talk to them about it” that should be considered success because it opens to door for educational opportunities.

“As your world becomes smaller (due to disability), it also becomes bigger and bigger (in love)”

The other success of this show and the accompanying book is that it gives us a model for how to tell these difficult stories well.  Quotes and reflections from those who have been through it give us invaluable understanding of what it will take to care for people well.  We are only beginning to tap the power of patients and families as educators and I think that the future will hold more and more opportunities to share your stories as we train the next generation of healthcare providers.

Why are there no pediatric patients in “Being Mortal?”

The producers of the show did interview me and other members of PACT and we considered a few patients that may be interested in participating. None of our patients fit, probably for a few reasons. For one, the intimacy of the discussions we have and the fragile ground that we often walk on did not lend itself to having cameras present.  The other is that the trajectory of pediatric illness is very unpredictable.  All of the patients featured in the show have advanced cancer which has a fairly predictable course and life expectancy can be predicted with some reasonable certainty.  Most pediatric conditions are nowhere near this predictable. In our PACT program we have patients who die within hours of birth and others who “outlive expectations” by 10 or 20 years.   We walk along with these families helping them have their child live as long as possible as well as possible, never knowing which hospital admission may be the last.  The story arc for these patients is long and definitely could not be contained in a 50 minute television program. Sometimes it’s just too hard to tell your story while you are living it.  However, I hope that more and more families will come to a time when they can share their story.

So what do I take away from watching this program and reading this book?

Dying is complicated. The mere thought stirs up complex emotions in everyone involved including the medical team.  Our current system is the result of fifty years of thinking we could overcome death through technology but we can’t.  It is time for a new approach.  I recognize how lucky I am to already know this and recognize that I learned it by listening to patient and family stories every day for the past 10 years. Personally I will take this as inspiration and a challenge to partner with families to tell their stories and get them published so that other healthcare professionals can read and learn from them.  I hope for a day in the not too distant future when all doctors (not just the palliative care specialists) can regard the lessons in “Being Mortal” as basic and say to themselves “I want more.”