As the field of Hospice and Palliative Medicine grows up and integrates into mainstream medicine, we find ourselves increasingly focused on building the evidence base for our practice and developing quality measures that will drive the best outcomes. That’s a noble endeavor, but as we struggle with the science, we run the risk of losing touch with the heart of our work. What drives us to run toward the medical failures, the suffering, the dying and the bereaved when most of medicine has been running the other way? Many would say it’s a call to compassion.
We remember the patients who taught us something special about how we can make a difference as healthcare professionals. Cicely Saunders never tired of telling the story of David Tasma, the patient who became “the window” in her hospice. I treasure the memory of one of my first hospice patients, a 50 year old male hairdresser who was dying of lymphoma in our inpatient unit. I had admitted him expecting to tune up his pain meds and send him home as good as new, but he started into an accelerating daily decline. I felt it was my duty to break the bad news to him that his time was short. I sat at the head of his bed, leaned in and softly listed all the signs that he was getting worse. His sister sat at the foot of the bed in silence. He nodded his head and listened. Suddenly, he reached up with both hands, grabbed my head and gave my bald spot a big rub. After a moment of shock, his sister and I burst out laughing. He grinned and said “I know─ it’s OK.” He died comfortably at home a few weeks later and I went to the wake. His sister introduced me to the rest of the family as the doctor whose head you rub for good luck. They lined up and took turns rubbing my bald spot and we all laughed. He taught me that sometimes just being myself is worth more than all my medical expertise. How do you develop an evidence base around that practice? How do you capture that positive outcome in a quality measure?
As we parse out the components we hope will define quality palliative care, we have to be careful to preserve the whole experience. When I was an English major, I explicated my share of poems, but analysis of the bits and pieces never came close to capturing the beauty of the whole. As Wordsworth wrote:
Sweet is the lore which Nature brings;
Our meddling intellect
Mis-shapes the beauteous forms of things:–
We murder to dissect.
I was privileged to attend a recent AAHPM summit on quality. We talked about taking the lead in defining quality for our field. We were each asked to offer a personal vision for what the AAHPM Quality and Practice Standards Task Force could be in five years. I put mine in the form of a thank you letter from a future patient:
August 9, 2012
Dear AAHPM Quality Task Force,
When I learned a couple of months ago that I have advanced cancer, I was afraid. Not just of the usual things–having pain, being a burden, dying–even more afraid of how the doctors would treat me. I flashed back to the ordeal we went through when my husband died of cancer 6 years ago. As we moved from hospital to clinic to hospice at home, it seemed everyone treating us had their own agenda. We felt lost and out of control. We were told what to do, not asked. He was in pain for so long before anyone did anything about it. When he finally got pain medication, he got so constipated that the hospice nurse had to remove it manually. We felt like cogs in a machine–a horrible, grisly machine.
I cannot believe how different my experience has been. Every time I go to the clinic, someone asks how I feel and what goals I have and how they can help. They are patient with my questions. They are honest and straight with me and support the choices I make that are right for me. I feel I am driving this bus. And I am always asked about my bowels! I am amazed at the transformation. I hear you all had something to do with it and just want to say thanks.
It seems to me that we need to go way beyond the current focus on symptom management and discussing goals of care to develop evidence-based practices and quality measures that actually foster compassion. We must be the standard bearers for patient- and family-centered care. We must promulgate best practices in interdisciplinary collaboration and holistic care. We must advocate for no less than restoring the human touch to health care.
Joe Rotella, MD, MBA, FAAHPM
Senior Vice President, Chief Medical Officer