By BETSY TAYLOR
Palliative care expert Dr. Ira Byock knows the challenges physicians face: the urgent cases, the complexity of patient needs, the time pressures. He knows terminally ill patients and their families struggle with end-of-life issues: the physical decline, the difficult conversations and decisions that many don't prepare for in advance.
To provide resources, training and support to help clinicians have more meaningful conversations with patients and their families about their preferences for care through the end of life, he started last summer as the founding executive director and chief medical officer of Providence Health & Services' Institute for Human Caring, based at Providence TrinityCare Hospice in Torrance, Calif. The institute serves the five-state Providence Health & Services, with 35 hospitals and ancillary facilities in California, Washington, Alaska, Oregon and Montana.
Byock previously directed palliative medicine at Dartmouth-Hitchcock Medical Center and chaired the department of palliative medicine at Dartmouth's Geisel School of Medicine in New Hampshire. He is the author of Dying Well: Peace and Possibilities at the End of Life and The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life.
Tell me about the work of the Providence Institute for Human Caring.
The Institute for Human Caring is still really in early development. It is intended to be an engine for rapid quality improvement and measurable changes in whole person care throughout our Providence system. We'll study how health care decisions are made. Are those decisions really consistent with people's wishes and with achievable health care outcomes? Do patients and their families feel that clinicians are communicating well with them? Are symptoms and functional capacity of patients considered as home care plans are being developed? How are we managing transitions of care from the perspective of patients and families and the clinicians on either side of those health care transitions?
We want to develop programming and expertise to help each of the Providence ministries narrow the gap between what we hope to provide and what the data shows we are doing today. I'm just developing the staff, but there will be clinicians on staff (working) as educators and quality improvement experts. We won't be giving direct patient or family care from the institute.
What is the role of the institute?
Its role is as an enterprise-wide accelerator of measurable quality improvement throughout the health system through education, technical assistance regarding measures and programmatic redesign and a myriad of patient engagement strategies. There is another focus of the institute, however, and that is to help us engage the communities that we serve through Providence, many of which are ethnically or religiously diverse communities, to understand their group-level values, preferences and priorities, and then help those communities in expanding their own caregiving capacity.
Now, that sounds abstract but it may be as simple as things like expanding parish nursing or Stephen Ministries (Christian outreach to frail or elderly residents) within various ethnic and religious communities or looking at how we can expand intergenerational programs to the benefit of frail elders and young children at the same time.
Do the Affordable Care Act and the move to capitated payments for health providers create an opportunity for a more meaningful expansion of palliative care, and if so, how?
The changes in American health care including Obamacare or the Affordable Care Act and the move to measure quality and value really provide a remarkable historic opportunity to rapidly transform a system in ways that many of us have always felt would be advantageous. Palliative care is instrumental in that transformation, but it's not the thing itself. What we are all trying to do is improve the genuine quality of the experience that seriously ill patients and their families have.
And the Affordable Care Act represents that change that really shifts us from the business model of medicine being more is better — meaning volume of procedures, tests, treatments are better — and moving us toward a business model where measurable higher quality is better. So anything that shifts the financial case from volume to value is a potential accelerator of the change we want to see in the world.
How does that come into play with end-of-life care?
When people are seriously ill, and we know that the end of their lives are approaching, doctors, nurses and their families want to do everything possible. We want to give those people the best care possible. Unfortunately, our American health care system tends to conflate disease treatment with better care.
As people get sicker and because life is precious and we care about the people who are our patients, the reflex has been to increase the intensity of diagnoses and treatment-based care. But in fact, because we're all mortals, at some point in time higher intensity of medical treatment doesn't really equate to better human care.
So as we shift toward measurable quality, there is advantage in having those conversations dealing with the difficult but normal process of satisfyingly completing and closing the lives of ourselves and the people we care for, and that shift really has the potential of vastly improving the measurable quality, the experience of quality of care through the very end of life that incurably ill patients and their families derive.
There are several efforts at the state level to support "aid-in-dying" laws, which would allow doctors to write lethal prescriptions for terminally ill patients. You're an outspoken opponent of physician-assisted suicide. How should opponents meaningfully counter these efforts, particularly when proponents argue that terminally ill patients have a right to avoid suffering and dependence?
First, I avoid using the term "aid-in-dying" because, frankly, I and thousands upon thousands of colleagues in hospice and palliative medicine, provide people with aid and they're dying day in and day out; and to conflate that with writing lethal prescriptions or giving lethal injections is really an Orwellian exercise in language.
I think all of us as a caring community and certainly within Catholic health care need to boldly face the fact that there are serious problems in the care that we provide to incurably ill Americans and their families and dramatically address the roots of the problem that are causing needless suffering. Until we do that, this angry response from the public demanding the right to end their life on demand will continue.
I'm trying to link this — the anger and the engagement that is behind the movement to legalize assisted suicide — with a movement to robustly change medical education so that we're teaching doctors how to communicate effectively with patients including how to listen to patients and families, (so) that we require genuine shared decision making between patients and families and their physicians, and so that we mandate the monitoring of patients' pain and other physical symptoms to ensure that attention to these systems becomes routinized within our health care system.
If somebody feels that they are trapped within a burning room and there is no alternative but to either die in horrible suffering or end their life prematurely, the notion of assisting them in suicide seems reasonable, even progressive. But if we know that there is a fire extinguisher behind a panel in that room and that a fire escape is behind the door if you just know where to push, the idea of giving them a lethal dose of medication or a way to end their life prematurely would seem absurd. I know that those ways of alleviating suffering are readily available. We're simply not making people aware of them and not building them into the health care environment.
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The Institute of Medicine's report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life
released last fall concludes that "a person-centered, family-oriented approach that honors individual preferences and promotes quality of life through the end of life should be a national priority." It offered a map for improvement. Dr. Ira Byock, executive director and chief medical officer of the Providence Institute for Human Caring, part of Providence Health & Services, spoke to Catholic Health World
about the report during a recent conversation about shortfalls and strengths in end-of-life care. (Edited audio.)
Palliative care experts Dr. Ira Byock and his spouse Yvonne Corbeil hosted a "Death over Dinner" event on Jan. 7. The guest list included celebrities, and members of the media were invited to cover the opening conversations. Byock is working with The Conversation Project in a national program to encourage such dinners as a way for family and friends to talk about how they want to be cared for in their final illnesses and commit to plan ahead for end-of-life care decisions.
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