Changing how we care for the incurable

By Judy Citko & Myra Christopher, San Diego Union Tribune

Despite polarizing political views about what’s wrong with health care in America today, one thing that most people can agree on is that our current system does not work for patients, families or health care professionals. Few areas highlight what’s wrong with “the system” as well as chronic pain and end-of-life care. We know that pain will affect all of us at some point in our lives. And, we know with absolute certainty that we will die.

To a certain extent, how we live life and face our inevitable death are determined by a nameless and faceless bureaucracy that we call “the system.” While there are deficiencies and inadequacies at every level, the sum of these broken parts can total disaster for people who live with pain, and those who fear dying in pain.

The Coalition of Compassionate Care of California (CCCC) conducted a forum in San Diego to discuss challenges facing end of life care. The group of health care providers, social workers and chaplains is keenly interested in working to improve our system across the continuum of care. They are focused on eliminating fragmented, “siloed” health care that focuses on only one part of a person’s experience with serious illness or chronic pain and promoting comprehensive, “person-centered” care that respects the needs, goals and values of the patient.

CCCC, in collaboration with the California HealthCare Foundation, released a report last week, “Final Chapter: Californians’ Attitudes and Experiences with Death and Dying,” that finds nearly eight in 10 Californians said that if they were seriously ill, they would want to speak with their doctor about end-of-life care, but fewer than 1 in 10 report having had a conversation. This finding in particular highlights a gap in the patient experience with our current biomedical model, obsessed with cure. It’s time to start thinking differently.

Last summer, the Institute of Medicine issued “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research,” a report that calls for a seismic shift in the way that pain care is approached, including pain at the end of life. Central to the report’s recommendations is an “integrative” model of care that looks at a whole person: body, mind and spirit, in the context of their environment. Some people think this is revolutionary; others think it’s simply common sense. After all, we are all human beings, a mother, father, engineer, sister, artist. We are not a tumor or a stroke or an arthritic knee.

Logistically, there are issues with how we shift the locus of concern of our current system – one designed to fight and cure disease, one body part at a time, to one that recognizes that cure is not always possible, but compassionate care is. Perhaps because of its complexities, changing the way that we view and care for chronic pain, that which cannot be cured, can transform the way that we care for each other no matter the diagnosis, prognosis or where care is provided.

We know that we can do better. Our collective moral compass demands that we do better.

Our humanity drives the social transformation called for in the Institute of Medicine report. Our flawed health care system designed to cure (even when all agree that cure is not possible) has a hard time reconciling with an integrative model that focuses on healing and well-being. Healthcare providers need to look their patients in the eye and come to know the human behind their illness or ailment. We can all work toward improvements in care by opening our eyes, our hearts and minds to those around us who are suffering needlessly. Talking about end-of-life treatment preferences with loved ones and providers is a good first step. Talking about living well until the end of life can help us change the conversation and our health care delivery system.

Citko is executive director for the Coalition for Compassionate Care of California. Christopher holds the Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics and was founding president and CEO of the Center.

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