Institute of Medicine urges reforms to improve care for dying people

By Lisa M. Krieger

An influential national institute has prescribed a powerful cure for America’s approach to dying, saying that today’s health care system is ill-equipped to provide the comfort and care so cherished in our final days.

The long-awaited report released Wednesday by the Institute of Medicine recommends that regular end-of-life conversations become part of patients’ primary care, starting at age 18 and that doctors should be paid for time spent on these discussions — a controversial initiative eliminated from President Barack Obama’s health care law.

The report reflects the growing concern over the dizzying array of high-tech interventions to emerge in recent years that prolong futile suffering, often at great emotional, physical and financial cost. Those interventions were the subject of this newspaper’s yearlong series “Cost of Dying.” To correct the current, misguided course, Medicare should boost coverage for home health services, not just high-tech hospital care, the report urges. And more doctors must be trained and licensed in end-of-life care, through changes in universities, state medical boards and accrediting agencies, it adds.

“Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background,” said Dr. Philip Pizzo, former dean of Stanford University’s School of Medicine and a co-chairman of the report.

“It is our hope,” said Pizzo, “that this report will lead to improvements in end-of-life care and the experience of dying for all.”

The 21-member committee, which included experts in law and medicine, devoted two years to studying federal policy, financing and hospital practices. Recommendations of the institute, a private, nonprofit arm of the National Academy of Sciences in Washington, D.C., often make their way into U.S. laws and federal agency policies.

The “Dying in America” report recommends that federal and state governments and private insurers create financial incentives for patients and clinicians to discuss end-of-life matters, document patient preferences, and provide appropriate services and care.

The report authors also suggest having initial conversations about end-of-life values, guided by a physician, at milestones of life, such as getting a driver’s license, turning 18, leaving home or marrying. Additional planning should occur for those in high-risk occupations, at the onset of chronic illness and when applying for Medicare.

“There is unnecessary and gratuitous suffering all over the place,” said Dr. BJ Miller, executive director at San Francisco’s Zen Hospice, who was not involved in the report. “But when the Institute of Medicine says something, people listen — at all levels,” said Miller, an assistant clinical professor of medicine at UCSF.

A Stanford end-of-life care expert said the report is ” relevant to persons who are seriously ill, their parents, children, extended families — which essentially means every American.”

“The timing of the report is exquisite, especially as the population of multiethnic older Americans is now exploding into a ‘silver-brown tsunami,’ ” said Dr. VJ Periyakoil, director of Palliative Care Education & Training at Stanford’s School of Medicine.

The 507-page report mirrors findings of this newspaper’s Cost of Dying series — posted at www.mercurynews.com/cost-of-dying. The series concluded with a story that prescribed ways to make end-of-life care more affordable and humane and led to community meetings throughout the Bay Area.

Data show that patients subjected to ineffective and burdensome high-tech treatments do not necessarily live a quality life longer — but instead suffer a prolonged dying. Such care is expensive and physically and emotionally hard on patients and their families.

But political controversy — and a human tendency to avoid thoughts of one’s own death — have derailed discussion of a profoundly important subject.

A 2009 provision of the Affordable Care Act to pay doctors for end-of-life counseling was labeled a “death panel” and never found its way into the law. A second attempt to authorize payment also was shelved.

The fee-for-service structure of the health care system is also to blame, the report concludes. “Perverse financial incentives” reward expensive high-tech and hospital procedures, rather than conversations, home health care and pain management.

The report was funded by a $1.5 million gift from an anonymous donor — who has also offered to fund a yearlong public education campaign.

“Most of us understand that we will die,” Miller said. “But we don’t know how to talk about it or what to do about it.”

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