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Talking About Death

Medical Societies Spearhead End Of Life Care

Randi Belisomo

This piece was first published in Chicago Medicine (page 18-19). LMM President Randi Belisomo is a contributor.

Bernard “Bud” Hammes, PhD, has spent a lot of time on the phone lately. The balding, spectacled but tireless medical ethicist for La Crosse, Wisconsin, Gundersen Health System has been enthusiastically fielding calls from medical societies, health executives and policymakers nationwide, wondering if they can turn their system or town into one like his own—dubbed in recent headlines as “The Town that Talks About Death.”

Since 1991, Dr. Hammes has been refining his Respecting Choices program, engaging patients in informed discussions about end of life decision-making. More than two decades later, he is witnessing tremendous benefits. Ninety-six percent of those who die in La Crosse have advance directives; nationally only 30% of adults do. “It’s a part of the social fabric here,” Dr. Hammes said of La Crosse, where studies show Respecting Choices has led to the high prevalence in honoring patient preferences, reduced use of hospital services, and no change in mean length of life.

The program is no silver bullet, he acknowledges, calling it instead, “a central tool in the complex tool kit for improvement of health systems and the care of patients.” However, that “central tool” for care may be more aptly described as an axe when applied to health spending. According to the Dartmouth Atlas of Health Care, La Crosse spends less on patients at the end of life than any city nationwide. A finding like that is something health leaders notice, since the Affordable Care Act encourages simultaneous spending reduction and quality improvement.

Dr. Bernard Hammes
Dr. Bernard Hammes

“We used to shy away from cost questions,” Dr. Hammes said. “We are certainly more comfortable saying something improves care. That it saves money is a blessing and unexpected event, and it gives us the ability to carry out this work.”

It turns out that when asked, most patients opt against high-intensity end-of-life care. But more than a quarter of Medicare spending is spent on just that. The particulars of patient preferences aren’t what matters to Dr. Hammes. What matters is that patients are asked what those preferences are, and that they are honored.

“Chaplains, social workers and nurses are among those being trained within health systems to guide patients in determining what they value at the end of life.”

Now, his work is being replicated worldwide, as Respecting Choices programs are popping up across the globe—in Australia and Singapore—and as close to home as Minnesota. A common denomi- nator underlying these initiatives is leadership from local medical societies, organizations Dr. Hammes calls “excellently positioned” to empha- size advance care planning, so patients may speak up and spell out the care they want. The work costs time and money, Dr. Hammes warns. “We do it, because it’s the right thing to do.”

The Respecting Choices Program At A Glance

Dr. Hammes’ Respecting Choices paradigm trains non-physician facilitators to guide patients in advance care planning within First Steps, Next Steps and Last Steps programs staged to individuals’ health. “The program is physician-friendly,” said John Ropp, MD, a family physician on the board of the South Carolina Medical Association, which is planning First Steps implementation next year. “It makes sense from a clinician standpoint what we’re trying to accomplish, but it takes more than doctors to accomplish meaningful things in the community.”

Chaplains, social workers and nurses are among those being trained within health systems to guide patients in determining what they value at the end of life. Time-strapped physicians refer patients of all ages and stages of health to facilitators to explore fears and experiences as witnesses to loved ones’ deaths. Religious beliefs shaping preferences are also unraveled, and patients choose trusted surrogates to execute decision-making in the event they cannot.

“It’s a way for patients to develop their own insight about why end of life planning is important, figure out what they want, and understand what their values, goals and preferences are based on other experiences,” Dr. Hammes said. Patients typically leave discussions with advance directives completed; in La Crosse, directives are stored in medical records shared among the city’s two health systems.

Why Medical Societies Are Suited To Lead The Charge

Though Respecting Choices has taken hold in northeast Florida with hospice leadership, Dr. Hammes says medical societies are ideally positioned for sponsorship. “They stay out of provider competition,” Dr. Hammes said. “They represent physicians at all institutions and have clear leadership.”

Leadership was something the Twin Cities Medical Society was after in 2008, while seek- ing a project to make its own. End-of-life care needed improvement, members agreed, when they voted to attempt a replication of La Crosse’s success. They dubbed the initiative “Honoring Choices Minnesota.”

“It’s been a blur since,” said Sue Schettle, Twin Cities Medical Society CEO. Four local executives contributed $25,000 each. The medical society did too. Seventeen pilot sites formed between 2010 and 2013, and facilitators now work in clinics, churches and community centers. “It’s gone viral,” Schettle said.

Though Respecting Choices is Wisconsin-born, Minnesotan success prompted the Wisconsin Medical Society towards implementation. “Members wanted a project benefitting everyone, and this had obvious broad-based benefit,” said John Maycroft, director of initiatives.

“Honoring Choices Wisconsin” launched last year in six systems from Madison to Milwaukee. Though insurers contribute to the $350,000 annual budget, members know they are positioned to
lead. “The message from physicians is important,” Maycroft said. “If it came from government or insurers, it wouldn’t be as strong.”

The work isn’t easy. Success requires coordination ensuring conversations are offered, sched- uled, conducted and recorded. Three thousand have been facilitated so far. “We found incredible pent up energy,” Maycroft said. “People have come out of the woodwork to help.”

Energy was also apparent among Richmond Academy of Medicine members, who were concerned about late hospice referrals. They agreed something similar to “Honoring Choices Minnesota” might work in Virginia; early intervention, said director Deborah Love, was more “palatable” than the current approach—one members believed amounted to “waiting until crises develop.”

Thirty facilitators from three systems begin First Steps training this September. Those organizations contributed financially, each establishing three pilot sites. Community outreach begins next year, when facilitators are ready to respond.

In South Carolina, implementation of the Physician Orders for Scope of Treatment (POST) project exposed what state medical association members believed was lacking: earlier advance care planning. POST, similar to Illinois POLST, is intended for patients expected to die within one year. “There’s a lot more to it,” Dr. Ropp said. Members plan a First Steps project across five health systems.

Dr. Ropp expects that typically competitive systems will be quick to collaborate. “Competition works both ways,” he said. “It breaks down markets, but on good projects, it serves as positive peer pressure.”

South Carolina Medical Association leadership, however, is essential, Dr. Robb says. “Insurers or state agencies would be seen as attempting to save money by limiting care,” he said. “Being physician- led is a moral, ethical high road.”

Is Chicago Next?

Chicago’s large, diverse population and numerous health systems, end of life experts say, underscore the need for an advance care planning initiative; however, those factors may present challenges so far unaddressed by Respecting Choices programs. “In Chicago, we are densely populated with health systems that don’t communicate with each other,” said Julie Goldstein, MD, an Advocate Illinois Masonic palliative specialist and Chicago End-of-Life Care Coalition founder. “We need a common language for patients to communicate their wishes across the spectrum of care.” With a six-hour online module and one full-day class, Advocate Health Care has trained 130 case managers in Respecting Choices First Steps facilitation.

Achieving buy-in from Chicago’s health systems may be difficult, but Dr. Goldstein says it is pos- sible. “Many health care institutions are coalescing into larger systems, and that should make it easier to collaborate and coordinate for uniform practice,” she said.

Such a citywide initiative, however, would be complex, requiring culturally sensitive outreach. Much work would need to be community-based, setting a model precedent across a diverse municipality.

NorthShore University palliative specialist Mike Marschke, MD, is attempting one such model within his own system. Nine months ago, he designed advance care planning pilot projects within outpatient oncology and cardiology clinics. In September, 800 physicians and 2,000 nurses, chaplains and social workers received advance care planning facilitation training via 20-minute online videos, produced for roughly $4,000.

“Chicago’s large, diverse population and numerous health systems, end
of life experts say, underscore the need for an advance care planning initiative.”

His short-term goal is for NorthShore’s seriously ill patients to engage in discussions about care goals. In first addressing the most vulnerable patients’ needs, Dr. Marschke acknowledges he starts with the “lowest lying fruit.” Patients will be asked to assign a power of attorney for health care. Documentation of discussions and directives will be recorded in EPIC; the electronic medical record with a new end-of-life care navigator was tested within NorthShore this year.

“You need to change culture,” Dr. Marschke said. “Culture can only change from within.” He maintains Respecting Choices is unnecessary; time, effort and leadership are what’s required. “Hospitals have to figure out how advance care planning can work for them,” Dr. Marschke said. “You shouldn’t have outside agencies telling them how to do it.” Where Drs. Marschke and Goldstein agree, however, is that such work must be done.

“We are at a tipping point in this region, a time of crisis in health care and resources,” Dr. Goldstein said. “It’s time to realign them with patients at the center.”