Some people who know what I do don’t really know what I do.
They picture me floating through the hospital extinguishing lives, blowing them out one by one like candles down an endless corridor. 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 entirely 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 though I spend every day in the shadow of death. I don’t cherish the end of life — there are certainly moments when I wish the people I love would live forever. I am not a glutton for the end of things.
Before I started medicine, the image of death in my mind glowed with a backlit melodrama. Death to me was Juliet with the dagger, Anna Karenina before the train; it was crying and flailing and fear. Death was final. It was the extrication of something tangible from our lives — the end of a lifelong chain of cause and effect, of pushing a button and watching things unfold. Death, to me, was the end of what gave meaning to life: the sensory ebb and flow of our relationships.
I was twenty-two at the time. Now I’m thirty-three, and a decade of experience hangs from my shoulders, and I find that my view has changed. I know now that death is not really about dying: it’s about living.
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, to me, is the distilled essence of palliative care: patients as people. There are other definitions, sure — but this, to me, is it.
Palliative care is a young field in medicine, but its origins root deeply in ancient history. The term palliative care comes from the Latin palliare, which means “to cloak.” Its practical origins extend back to the 4th century where “hospices” gave weary travelers respite from the road. It expanded to the medical field in the 11th century around the time of the Crusades and emerged stronger in the 19th century, championed by various religious orders in the United Kingdom and France. Palliative care as we know it today has its modern origins in the hospice movement, with Dame Cicely Saunders beginning her pioneering work with the terminally ill in 1948, and later helping to establish St. Christopher’s Hospice — the first of its kind — in a suburb of London. Since then palliative care has grown – in the United States alone there are now over 3,200 hospices and over 100 accredited palliative care fellowship programs for specialty training of physicians.
Over time, a clear distinction has formed between hospice and palliative care because the two are not the same: Hospice is care specifically geared toward the last 6 months of life, while palliative care is care concurrent with a person’s illness — at initial diagnosis, during active curative treatment, through all the good and bad of a life-threatening condition. Just because someone is seen by palliative care doesn’t mean he is appropriate, or even eligible, for hospice.
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 not only improves quality of life and symptoms of anxiety and depression, but also improves 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, and I’ll be the first to admit that I am biased — but my bias comes from a belief of what medicine should be, which is very different from what it often is. I believe that medicine, at the end of a very long day, 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. In my mind 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.
In my mind, it’s about people like John.
I first met John in my clinic, he was a man who woke one morning in the middle of life with pain that wasn’t pain before — an ache in his gut that wouldn’t relent to reassurance. So he saw his primary care physician, and the rest — as he said — was history. Pancreatic cancer had spread like a weed, restructuring the landscape of his life, uprooting his plans and his relationships, things he’d been cultivating for years. John was angry. At himself, at his cancer, at his God. He was so angry that it kicked his pride into overdrive, and he resolved above all else to survive. The first thing he said, before I’d even introduced myself, was “Doc, I’m not pulling the plug. Don’t even want to talk about it.”
So we didn’t talk about it.
We talked about his pain, how it clawed at his insides, about his constipation, about his weight loss despite eating everything in sight. We talked about his grandchildren. We talked about his collection of antique metal signs, and how he loved to just sit in his boat, beer in hand, and see what tugged at the line. John valued having energy and spending time with his family, and quality of life but he also needed to fight his cancer, and be cured. We never talked about death, in the beginning. I never mentioned the H word. It just wasn’t right for him at the time.
We met in clinic every two weeks — most of our conversation revolved around his pain and nausea and plans to adjust his medication. But every so often he dropped his guard, intentionally I think, to see if I’d notice. And so, one foot gently before the other, we explored his emotions — how afraid he was of leaving his wife, his anxiety over saying goodbye to his grandchildren, his frustration and embarrassment over not being there for his family as he’d hoped. I got to know him better, and John got to know me better, too. And after several months there was very little left to guard.
He told me one afternoon that he was just so tired of it all. I asked him to tell me more, and he said he was a fighter but that he was getting tired of fighting. Where was the dignity of living a life of side effects? We sat there for a minute, both thinking about what this meant. I offered that maybe, as we go through life and loss, the fight changes. He nodded slowly and grabbed my hand, and we sat there together — in silence — not saying a word.
A followup CT scan showed that his cancer had progressed despite aggressive chemotherapy, and at his next visit there was a lot more space between his shoulders and the doorframe. He’d lost another ten pounds. He came in with his wife, and we talked about his fight, and how perhaps it was time to keep fighting, as hard as ever, but for a different goal. Imagine yourself on a train, I said. This train you’re on can’t be stopped, but maybe we can make the ride smoother. Maybe we can change things up a bit, change the scenery, get you on that lake.
We talked then about hospice. I told him that hospice wasn’t for everyone at the end of life, but that based on his goals and values I felt like it would give him the support to keep on living the way he wanted, and desperately needed, to live. And that they would be there for his family as well and provide them with support and counseling for a year after he had died. He smiled and nodded. John enrolled in hospice and died two months later, at home, surrounded by his family.
He’d spent almost every day on the lake.
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 — not to speak, but 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 — because some people have different goals and values regarding the end of life, and there is nothing wrong with that. The only thing that matters is what matters to you. And once we figure out what matters to you, we work with the other medical providers to make sure that happens.
We are palliative care providers. Nurses, doctors, social workers, chaplains, aids, volunteers and countless others. And we do what we do because we believe that this is what medicine should be: an enterprise in empathy.
John shook my hand the last time we met; his wife gave me a heavy hug. I’ll remember it always: His face that day — sculpted as it was from hollows and loose skin — glowed with the softness of some sort of peace. He sighed. He said it was the hardest easiest decision of his life, and he thanked me for letting him make it in his own time and his own way.
And that was the last I ever saw of John.
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 — and I’m on my own train heading toward my own end, whatever that may be. Along the way I hope to meet more people and hear their stories, and remind them that none of us need ride alone, though through the fog it’s hard at times to see.
I’m a palliative care doctor.
This is what I do.
Andrew Thurston is a palliative care physician.