Some people who know what I do [palliative care] don’t really know what I do.
They picture me floating through the hospital extinguishing lives, blowing them out one by one like candles. They think I practice euthanasia, that my presence alone hastens death — that I consume hope and happiness like a black hole, compressing it all into nothingness. Some call me the Grim Reaper, others the Death Doctor. Some say I’m an agent of health care reform, the peddler of a secret government agenda.
The truth is, I’m none of these things.
I’m a Palliative Care Doctor
People come and go — lives come and go — like passengers on a quickly moving train before my station, but it’s not without the utmost humility and respect that I watch them pass. If I were ever unaffected by the death of a patient, I’d think it time to stop doing what I do, and move on.
I’m a palliative care doctor, and the truth is this: I do have an agenda, but it’s not something sinister or laced with deception. My goal is simple: to make sure we treat our patients as people, not as “cancer” or “kidney failure” or “stroke” but as the unique, individual, storied people that they are. People with their own goals and values — people with their own definitions of what it means to live, even as they approach that infinite tunnel.
This is the essence of palliative care: patients as people. There are other definitions, but this, to me, is it.
Evidence supporting the impact of palliative care on quality of life continues to grow as quickly as the field itself. The landmark New England Journal of Medicine study in 2010 by Temel and colleagues showed how early palliative care involvement improves quality of life, symptoms of anxiety and depression, and survival in patients with lung cancer. Other studies have shown that many people don’t want aggressive interventions at the end of life and yet still receive these interventions. And that people want to talk about death and dying, but often don’t get the chance — because of fear, or lack of physician training in empathic communication, or cultural differences. Or something else entirely.
I’m a palliative care doctor, and I believe firmly in the work that I do, buoyed by a belief of what medicine should be, which is very different from what it often is. Medicine is about people and how people interact and communicate, about how illness impacts someone’s quality of life, about what it does to their happiness and identity. Real medicine is about a shift in perspective — about viewing our patients, not as a small microcosm of a greater disease, but as whole, complete, unique people trying to live in the midst of something terrible.
This is the Truth About Palliative Care
We meet people and get to know people. We try to find out what gives their lives meaning, what they champion in life, what they cherish but also what they hate and fear. We respond to emotion. Emotion is the fog of illness — it suffocates and obscures the path ahead but also the path behind. We try to be a presence in the fog, a hand to hold, a shoulder on which to lean. We listen, not to force an agenda but to understand and to support. And we help create medical plans based on each person’s unique goals and values, not based on stereotype or generality.
We’re not salesmen. Our job is never to convince someone that his or her way of viewing the world, or terminal illness, is wrong. We don’t recommend hospice to everyone because hospice is not appropriate for everyone; some people have different goals and values regarding end of life, and there is nothing wrong with that. All that matters is what matters to you. And once we figure out what matters to you, we work with the other medical providers to accomplish that.
We are palliative care providers. Nurses, doctors, social workers, chaplains, aids, volunteers and countless others. We do what we do because this is what medicine should be: an enterprise in empathy.
People come and go, lives come and go, like passengers on a quickly moving train, but when I take a look around I realize that there are no stations in life, only moving trains. I’m on my own train heading toward my own end. Along the way I hope to meet more people and hear their stories, and remind them that none of us need ride alone.
I’m a palliative care doctor.
This is what I do.
Andrew Thurston is a palliative care physician at UPMC Mercy. This is excerpted from an article that originally appeared in KevinMD.com on February 1, 2015.