End of life

May 28, 2015; Vox

Last year, the Institute of Medicine (IOM) published Dying in America, a 500-page report stating that the American healthcare system is poorly equipped to care for patients at the end of their lives. Though progress has been made in improving access to hospice and palliative care over the past decade, the committee identified major gaps: Not enough physicians are proficient in palliative care, providers are reluctant to have direct and honest conversations about end-of-life issues, and there is inadequate financial and organizational support for the needs of ailing and dying patients.

The Conversation Project, a nonprofit dedicated to helping people talk about their end-of-life issues, cites the facts: Eighty percent of people say if seriously ill, they would talk to their doctor about end-of-life care. Seven percent actually do. Ninety percent say that talking about end-of-life care with their family members is important. Twenty-seven percent have actually done so. Sixty percent say that they don’t want their families to be burdened with tough decisions. Fifty-six percent have not conveyed their wishes to their loved ones.

End-of-life-care planning is not currently a routine part of medical care in the US. There are multiple reasons for the lack of conversation about the end of life. Patients and families, because of fear, denial or family conflict, postpone facing the inevitability of death. Many physicians are reluctant, believing it is their duty to do whatever possible to save a life. Then, there are the economic realities. The fee-for-service model of reimbursement has discouraged doctors from talking to their patients about alternatives to dying in the hospital, like hospice and palliative care. Insurance companies won’t reimburse hospitals and physicians for talking about options with their patients.

Jenny Gold, reporter for Kaiser Health News, noted that “five years ago, the health law’s proposal for Medicare to reimburse doctors for counseling patients about living wills and advance directives became a rallying cry for Republican opponents of the law who warned about so-called ‘death panels.’ The reimbursement provision was removed from the Affordable Care Act before it passed.”

Perhaps change has its best chance at the grassroots level. Minnesota and Wisconsin have been standard-bearers when it comes to making end-of-life planning part of regular care, the byproduct of which has been a reduction in healthcare costs. Over the past three decades, La Crosse, Wisconsin, a small town on the Minnesota border, has been working to educate the entire community to adopt new practices with remarkable results.

“One of our doctors recently told me that making a plan is just like taking blood pressure or doing allergy tests,” says Bud Hammes, a medical ethicist at Gundersen Health System, one of La Crosse’s two hospital networks. “It’s just become part of good care here.”

Encouraging end of life planning has been challenging. Lacrosse’s residents were “sometimes upset or anxious. ‘Why are you bringing this up? Is there something wrong with me?’” Hammes says. “There were lots of strong emotions and this sense that this was only for people at the end of life and dying. We had to work really hard to convince people we wanted every patient to have this discussion.”

The conversion of the hospital’s practice started small with a pilot study of a small group of 60 patients with kidney failure. Families had the opportunity to discuss options for medical care under a variety of conditions. The program was so successful that Gunderson and the other hospital in town now give any patient in the system the opportunity to plan, not just those facing the ends of their lives.

To support the initiatives, Gunderson developed a program called Respecting Choices that gives the tools, including a script, to help caregivers have conversations by providing scenarios for discussion where there might be a choice of options. Today, 96 percent of La Crosse residents have an advance directive.

The effort has proven that patients prefer less aggressive courses of treatment. The Wisconsin Medical Society started to work on bringing the La Crosse model in 2013. (Minnesota had good results when they started doing the same thing a few years earlier.) Over two years, the program has reached 23 health systems. John Maycroft, MMP, the medical society’s director of policy development and initiatives says, “I want to show that this can be done, that it’s something Wisconsin can do and that other medical societies can do. We’re here for Wisconsinites, but we also want to be a national model.”

As the U.S. healthcare landscape is transforming and innovation has become a mandate for sustainability, a mind shift is occurring in how providers are approaching this issue. The IOM report concluded, “Health system managers, payers, and policy makers, likewise, have a responsibility to ensure that end-of-life care is compassionate, affordable, sustainable, and of the best quality possible.”—G. Meredith Betz