When my patient Arthur and his wife, Sally, were in for a visit recently, we had to have what I knew would be a challenging conversation. Arthur had advanced pancreatic cancer, and was getting worse despite his oncologists’ efforts to slow the progression of his relentless disease. The couple told me about a discussion a month or so earlier, when an oncologist raised the possibility of hospice care.
This is an all too common response when hospice comes up during discussions with my patients and their families. It is a segue into a process with two goals: dispelling myths and inaccuracies, and providing enlightening information.
Hospice is not a new concept. The term can be traced back to medieval times, referring to a place of respite for travelers. Dame Cecily Saunders is credited with introducing hospice as care for the dying in the 1960s, first in London and subsequently while a guest faculty member at Yale University. There has since been national recognition, accreditation, acceptance as a reimbursed benefit and market growth. Yet reactions ranging from shock to defensiveness or overt hostility are all too common when a doctor raises the topic of hospice care.
The reasons for this fall into two general categories. The first, our common societal view of death as tragedy or failure, is a construct imbued with deeply personal cultural and spiritual values. The second is the often ineffective way in which we communicate with patients. Here, doctors can make an immediate, powerful impact. We need to sharpen our communication tools and summon the courage to proceed.
But first, we must have the humility to be sure we are well informed ourselves. That means recognizing that hospice is not a place, but rather a philosophy of care which prioritizes the physical, emotional, and spiritual needs of patients nearing the end of life. It is well covered by insurance, does not mean hastening death, nor does it necessarily require abandoning curative treatments in favor of solely comfort care. It should, though, involve shifting the narrative away from the “at all costs” goal of survival, and toward meeting the inevitability of death in a way most meaningful to and respectful of the patient and people closest to them.
Conveying this information with clarity and sensitivity is a doctor’s duty of the highest order. Yet it is one we are often least prepared for in our medical training. Like many of my colleagues, I’ve had to seek opportunities to learn how to listen more closely, ask patients about their understanding of their illness and prognosis, and about care wishes.
Facing the end of life is scary, but hospice should not be. It is a kind and compassionate service designed to prevent suffering and preserve dignity as death nears. My conversation with Arthur and Sally was not easy, and thanks to some extra training and practice, it went well.
“OK, doc. I’m not doing very well. I’m losing weight, and the pain is getting pretty bad,” he replied.
“I think this may be a good time to reconsider getting some help from the hospice team. Tell me your thoughts about it,” I said, and gave my words time to sink in. After a lengthy silence, Sally spoke up.
“I think Arthur is worried that they’ll give him too much medicine, and he won’t be able to talk with us.”
This was the breakthrough Arthur needed. He started with hospice after he made it clear that he wanted only enough medicine to treat his pain without making him too sedate to interact with his family. His nurses worked with him, increasing the morphine to settle his rapid breathing only after his disease had ushered him into unconsciousness. He died peacefully in his home, surrounded by those who loved him, and hospice, his gentle friend.
Jeffrey Millstein, M.D. is a primary care physician and patient experience champion for Clinical Care Associates of Penn Medicine.