DOING WELL BY DOING GOOD: HOW REFORM OF END OF LIFE CARE CAN IMPROVE ACCESS FOR ALL AMERICANS

Written by: James T on May 18, 2009 10:39 AM EDT

James Tulsky, MD Center for Palliative Care, Duke University Medical Center, Durham, NC

In a recent New York Times Magazine interview, President Obama reflected on the last days of his grandmother’s life and the difficult choices he and his family faced. She was dying from cancer, suffered a small stroke, fell and broke her hip. They chose to replace her hip, but two weeks later she developed complications and died soon thereafter. After stating that if faced with the same decision he would do it again, Obama went on to comment, "Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else's aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model is a very difficult question." Yet, he continued "If somebody told me that my grandmother couldn’t have a hip replacement and she had to lie there in misery in the waning days of her life, that would be pretty upsetting."

Conservative critics and other opponents of comprehensive health care reform seized on these statements to warn that Obama was foreshadowing rationing, and presented this situation as a choice between the status quo and withholding care from the sick and vulnerable. However, this choice is false and we are seriously short-changed if we allow the discussion to proceed at this level. The President's story of his grandmother is, in fact, central to the question of health care reform. But, lost in the high decibel debate is the possibility of a third way.

To provide access to high quality care for all Americans our country must decrease overall health care spending. Currently, a disproportionate amount of costs are incurred at the very end of life and, more importantly, often go toward care that is neither effective nor desired. In 2006, 30% of Medicare expenditures were used by the 5% of beneficiaries who died that year. About one-third of these expenditures in the last year of life were spent in the last month. And, most of this was for invasive life-sustaining care such as mechanical ventilation. To put it another way, acute care in the final 30 days of life (which by definition is generally ineffective) accounts for 78% of costs incurred in the final year of life.

What does all of this mean? We cannot expect to get costs under control without thinking seriously about reforming the way we spend money on people who will soon die. However, raising this topic appears to be a political third rail in the health care debate. It is not an accident that there was barely a mention of end of life care in the recent Senate Finance Committee document on "Expanding Health Care Coverage: Proposals to Provide Affordable Coverage to All Americans." When the issue is brought up, it is often accompanied by accusations of rationing, withholding care and sensationalized stories about the elderly being denied dialysis in countries with “socialized medicine.” However, reforming care in a way that increases access to palliative care and hospice actually offers us the opportunity to improve the experience of dying patients and their families while reducing health care expenditures. The goal is quality; the benefit is cost savings. In health care, this is the ultimate example of "doing well by doing good."

Hospital palliative care programs have been shown to both improve quality and reduce costs of care for America's sickest and most complex patients. They do this not be reducing desired care, but by addressing symptoms, helping patients and families establish appropriate care goals and then coordinating care that meets those goals. Most people don't want to die in a hospital tethered to machines. Palliative care helps them ensure this won’t happen while saving the system millions, and potentially billions, of dollars. These savings come in fewer hospital admissions and elimination of non-beneficial imaging, laboratory tests, drugs and procedures. Those who remain skeptical ought to be convinced by studies of the geographic variations in the use of medical resources in the last years of life, which demonstrate that greater intensity of care does not necessarily generate improved outcomes.

Many in the health care community increasingly understand the role that rethinking how we handle our last days can play in achieving other reform goals. For example, the National Quality Forum and the National Priorities Partnership have identified "Palliative and End-of-Life Care" as one of six national priorities in health care reform. What would such a change in priorities look like? For starters, payment incentives could be redesigned to expand access to hospice and palliative medicine. End of life care quality metrics could be included in financing plans. Inducements could be created to ensure more providers receive training in end-of-life care. And, implementation of focused comparative effectiveness research on treatments used near the end of life would highlight the exact value of, for example, chemotherapy for very end stage cancer. To achieve any of these goals, end of life care must first become part of our national health care reform discussion. I applaud the President for recognizing the pivotal role this issue plays in the debate and for showing the courage to discuss it. We must ensure that the conversation moves beyond polarized positions and includes the full range of options offered by comprehensive and compassionate palliative care.

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