Conversations are exploding across the nation about health reform and, more specifically, about improving respectful care at the end of life, and these discussions are startling. Diversity of opinion, no matter how pointed, is needed to enrich decision making processes. Yet I’m surprised by the intensity of what I am hearing. The messages are strong and largely focused on life limiting actions being taken against the wishes of patients, family members, and healthcare staff. I am also struck by who is doing the talking. In recent weeks I’ve had challenging questions from personal friends and health care colleagues referencing fears of rationing, euthanasia, inability to assert “my rights,” and fixing this one piece in an overall “broken” healthcare system. These conversations have occurred at speaking engagements, private social events, on the street, and during breaks at meetings. They are emotional and deeply felt with many of those speaking scared and angry.
Beyond the questions that arise I’ve wondered what friends and colleagues and strangers alike are really saying. Three themes have emerged: Conversations about preparing for death, if they take place at all, are hard to have, they’re deeply personal, and they are taken on often with little experience or training (by those within healthcare as well as the general public). No one / few believe that our health care system can build a reliable system that will effectively honor the patient’s wishes for respectful care at the end of life. If it’s so important and possible, why haven’t they done it already?
Finally, there is a strong concern that we’re only focusing on end of life care right now because the country is in desperate need of money to pay for health care reform and a tremendous amount of resources are expended in the last 6 months of life.
As the national conversation about healthcare reform has moved along, it has moved away from a “Triple Aim” view (and innovative work at over 50 sites) offered by the Institute for Healthcare Improvement: redesigning the heath system to simultaneously improve the health of the population, the experience of care, and to reduce the per capita cost of care. Instead, the discussion of reform and redesign has narrowed to the topics of coverage, payment reform and cost containment. The patient and family-centered system, where the patient is a partner with the provider, if not the source of control, in their care appears missing.
So, what should we be focusing on when discussing care at the end of life? What must any reforms have as their anchors? First, respect. We must offer care to patients at the end of life that is based on knowing people’s wishes and preferences and that “gets it right”, reliably, 100% of the time. Getting there will require inviting patients to be full partners in the design and implementation of the system and listening to them. Is appropriate use of resources and how much money to spend, for what benefit, a part of it? Absolutely, but this isn’t the leading edge.
In Massachusetts this summer, at the request of the Governor and Legislature, some 50 people representing every major stakeholder are serving on the Commonwealth’s Expert Panel on End of Life Care. At the same time a major pilot initiative is underway in Worcester to honor patient’s wishes in life sustaining treatments. Both groups will make their recommendations this fall to the Quality and Cost Council, legislature, state officials, and the people of Massachusetts on how we can dramatically improve respectful palliative and end of life care. Let’s all loudly and enthusiastically get behind giving the public what they want: high quality care that is safe, effective, patient centered, timely, efficient and equitable care, and specifically care that honors their wishes for care at the end of life. And, keep those questions and comments coming. We are all learning.
Jim Conway, Senior Vice President, Institute for Healthcare Improvement
Member, Health Care Quality and Cost Council
This program aired on August 13, 2009. The audio for this program is not available.