I am a pediatric oncologist and a palliative care physician. I was originally trained in the late 1980's as a pediatric oncologist. I learned my craft in an era of buoyant optimism, a time when there seemed to be no limit to new and aggressive therapies, and the cure rates for childhood cancer were happily spiraling upward. New treatments such as bone marrow transplant had burst on the scene, and in fact, our motto about treating cancer was "More is better." I do not mean to belittle these therapies or this approach; after all, with this philosophy and with these advances, the cure rate for childhood cancer approaches 80%, and there have been improvements in survival in many adult malignancies and other illnesses as well.
But as I look back, I realize that the focus of my training was more on treating cancer than it was on treating people. I could come up with the best possible regimen to treat a child with leukemia or lymphoma, but I didn't know how to treat the excruciating pain which the chemotherapy wrought. I could treat a teenager with a malignant bone tumor, but I never really learned how to gently tell her and her family about the diagnosis and what it means. I could come up with a plan to treat an adult with a recurrence of a brain tumor, but I never learned how to tell him when the treatments were doing more harm than good, when it was time to stop. For such patients, it was always easier to come up with another chemotherapy regimen or find a Phase 1 clinical trial, than it was to sit with them and tell them that we are just not going to be able to stop this tumor.
And then, things changed. I remember it was about 10 years ago. I am not sure what stirred within me at that time. But something made me realize that I did not know how to relieve suffering in my patients. I didn't know how to treat their pain (one would think doctors would know how to treat pain, but you would be surprised how little training we get in treating pain and other symptoms—more on this later). I didn't know how to treat their fatigue or constipation, I didn't know how to recognize or treat their anxiety or sadness, I didn't know how to sit with them, be with them, hold their hands, and tell them that I will stick with them no matter what.
This gave me a sense of inadequacy. I felt an obligation to my patients to make them feel better. My inability to meet that obligation somehow led me to make an appointment with a highly regarded palliative care physician at my hospital. I wasn't really sure what palliative care was at the time, but I thought it had something to do with relieving pain and helping dying patients, and I knew this particular physician was well thought of and maybe he could help. I remember telling him that I don't really know how to take care of people in pain or people who are dying. "Is there some book I can read or some course I can take," I asked. "Not really," he replied with a bit of a chuckle. "But I tell you what you could do. You could join our palliative care team. We are just putting this team together and we could use a few more doctors." "But I haven't done this and I don't really know what palliative care is!" "That's OK," he replied. "We'll help you. There is no better way to learn this than to do it under the guidance of those who do." I gulped and I signed up.
The next thing I knew, I was seeing a 93 year old with congestive heart failure helping to relieve her shortness of breath, a 60 year old with lung cancer discussing with him the pros and cons of aggressive medical interventions, and an 84 year old in decline with dementia, working with him and his family to figure out just what sort of medical care he would want, and how he would want to spend his last days. I quickly realized what an amazing privilege it was to be working with these patients and their families at such an important time in their lives. It was palliative care.
In my next post, I will explain more just what this field is, how it has come to be a bona fide medical specialty, and why it is such an important part of medical care.