This is the third commentary about "Comfort Care as Denial of Personhood," a powerful essay in the July-August Hastings Center Report that describes a chilling encounter between a physician and a seriously ill disabled patient. The author, William J. Peace, who has been paralyzed from the waist down since 1978, was hospitalized two years ago with a large, grossly infected stage four wound. While he had no illusions about the gravity of his condition – he would be bedbound for at least six months, dependent on others, and saddled with staggering unreimbursed medical bills – he was unprepared for what a hospital physician said to him. “He informed me I had the right to forego any medication, including the lifesaving antibiotics,” Peace writes. “Although not explicitly stated, the message was loud and clear. I can help you die peacefully.”
Peace concludes that his experience was not an isolated case, but instead was evidence of pervasive discrimination against people with disabilities. “Many people – the physician I met that fateful night included – assume disability is a fate worse than death,” he writes.
Was Peace’s experience unique? Is his assessment accurate? We invited commentaries from leaders in disability rights scholarship and advocacy and a physician recognized for exemplary care of patients at the end of life. Read the first two commentaries here and here. We welcome comments and additional posts from readers.
Dear Bill Peace,
As a primary and palliative care physician caring for patients in their homes with limited function due to chronic physical and cognitive disabilities, I feel the need to apologize for the fear and alienation someone from my profession caused you that night. I also hope his words were well-intentioned, an offer to promote comfort as an additional alternative to the aggressive care you preferred and chose, albeit challenging to your body, your life, and your livelihood.
Whether or not he meant to, the doctor made a judgment that undermined your dignity as a person and devalued the life you were leading and wanted to keep living. It is a mistake many of us in the health care profession make and must learn from. He neglected to explore your values, beliefs, and preferences for the type and intensity of care you wanted to receive. He also failed to discuss the options for managing your severe illness based on your preferences and making a decision both acceptable and appropriate to you.
This core practice of communication is fundamental to patient-centered care, and as you experienced, it often gets lost in the fragmentation of our current health care system, which promotes specialization of services for maximum efficiency. Poor continuity between inpatient and outpatient care providers, multiple specialists making recommendations based only on data pertaining to their specialty, and a “system-imposed” value sometimes placed on what is “acceptable care” for a particular patient or situation (i.e., what is “worth doing?”) make it even more essential that the physician acts as an effective and empathic communicator. Whether the physician is leading an inpatient service or a palliative care consult or is an outpatient primary care provider, he or she should facilitate discussion and decisions with the patient, family, and care team with the goal of understanding patient and family preferences, whatever they may be.
Thank you for speaking so honestly about your experience and bringing to attention the harm caused to patients’ well-being when physicians and other health care providers do not perform the most basic of skills – listening – before speaking. Many patients with serious illness or chronic disability, such as those with dementia or who have suffered debilitating strokes, are unable to express the indignity they feel when subjected to the judgments of our health care system. I hope your words can bring about greater awareness in my professional community that leads to a greater respect for patient preference, both for death and for life.
Theresa A Soriano, MD, MPH, is director of the Mount Sinai Visiting Doctors Program at Mount Sinai School of Medicine in New York. She received one of the 2012 Hastings Center Cunniff-Dixon Physician Awards, which recognize doctors who provide exemplary care of patients at the end of life.