By Vincent Quagliarello, M.D.
In over 30 years of being a doctor, I’ve participated in many end-of-life events. But one stands out.
She was an elderly woman I had known for years; I’ll call her “Tessie” (not her real name). On the last evening of her terminal illness, I was in her home, standing at her bedside with her large extended family. I felt their glistening eyes yearn for me to harness both a spiritual presence and medical expertise. As they prayed the rosary out loud, I directed the administration of morphine drops on her tongue. She exuded peace. The family wept with gratitude. I never felt more like a doctor. It was the best end of life I’ve ever witnessed.
That experience was many years ago; today, I wonder why it was so good. Was it the palpable faith of a loving family? Was it the respect associated with palliative care? Was it the unification of medicine and spirituality? I wonder if it was something simpler.
A Step in the Right Direction
Medicare announced in July 2015 its plans to reimburse health professionals for end-of-life counseling and advance care planning. I herald this step, but the reality is complex.
An advance directive, documenting a person’s wishes for end-of-life care ahead of time, has limitations. When end of life is imminent, the document may be inaccessible; its language may be imprecise for nuanced medical decisions; patients may change their minds. Even with an updated document, challenges exist in implementation. Defining end of life and treatment futility can be difficult and subjective. A spiritual preference — of a patient, family or doctor — can be expected to impact these subjective views; we’re all human.
I often wonder about my own interactions with patients. In 2005, a survey reported that most doctors believe in God. I’m a doctor, and I also believe in God. However, as with many beliefs, doubt creeps in. Core beliefs, like advance directives, can evolve.
The reality is that during discussion of my patients’ spiritual preferences, I fear exposing my own.
A Difficult Subject
As an infectious disease consultant, I commonly advise about antibiotic treatment for patients with infections complicating chronic terminal illness — metastatic cancer, late stage HIV, severe dementia. Medically, I recognize the end of life and, in many circumstances, the futility of antibiotic therapy. But I always pause before mentioning the idea of palliative care. Patients, and families, can seem surprised by the suggestion. Acknowledging the end of life is hard.
I sometimes take notice of my patients’ spiritual preferences before initiating end-of-life discussions. However, I hesitate to discuss goals of care issues in the context of spiritual beliefs — and a recently published study suggests I’m not alone.
The reality is that during discussion of my patients’ spiritual preferences, I fear exposing my own. To maintain an unbiased professionalism, I evolve into a bedside equivalent of “Don’t ask, don’t tell.” My instinct is to be less intrusive; I shun the potential loss of trust.
But something’s changing.
A Pew Research Center report in May of last year described the rise in religiously unaffiliated American adults to almost 23 percent in 2014; the proportion was higher than mainline Protestants or Catholics. Will this impact end-of-life decisions if fewer patients and fewer doctors believe in God?
How Doctors Differ
A survey of doctors in the UK reported in 2010 that doctors self-described as “very or extremely non-religious” were more likely than “very or extremely religious” doctors to discuss and report decisions related to accelerating the end of life.
Perhaps non-religious doctors find it easier to discuss end of life, define futility and suggest palliative care unburdened by spiritual dogma.
Maybe patients, evolving to less religious lives, will welcome end-of-life decisions based on scientific and moral grounds, rather than spiritual ones.
Today, I wonder how my own life will end: whether it will be sudden or prolonged; whether it will matter if my doctor believes in God.
Can my end of life combine scientific-based palliation and spirituality? My experience votes yes. Does it matter? My instinct votes maybe not. Despite advance planning, I expect some uncertainty. Despite disparate core beliefs, I know there can be a common vision.
In the end, what I want is what Tessie had — trust. It just may be the thing that matters most.