Regardless of the final details of this year's health reform legislation, it is likely to force the conversation that America does not want to have: What do we value in end-of-life care?
The bill that will be signed into law will almost certainly do more to increase coverage than to lower costs. But the legislation will also advance experimentation with value—that is, the quality of care divided by the cost of care—in health care purchasing. The combination of an unsustainable system and a focus on value is likely to direct attention to end-of-life care, where the opportunity to improve quality and decrease cost is huge.
“We believe that quality care is delivered when we take the very best science and marry it to the express wishes of the patient for how they want to live and die,” said Ellen Stovall, Senior Health Policy Advisor to National Coalition for Cancer Survivorship, about end-of-life counseling and the politics of health reform.
The current practice of cancer care is ineffective in meeting that standard, she noted at a conference hosted by Avalere LLC, a Washington, DC-based company that bills itself as focusing on the intersection of business strategy and public policy.
Ms. Stovall, a member of OT's Editorial Board, points to research showing that more than 20% of Medicare patients with metastatic cancer start a new regimen within two weeks of death (JAMA 2008;299:2667-2678). Meanwhile, oncology accounts for 40% of Medicare's drug costs, begging the question as to how much therapy is actually wanted or helpful.
While Ms. Stovall is a long-time advocate for end-of-life planning, other voices outside the cancer community are beginning to discuss the same issues. Since mid-2009, The New York Times has been publishing a series—called “Months to Live”—exploring the issues associated with extending—and ending—life for extremely ill people.
More recently, Matthew Holt, author of one of the most widely read blogs about health care policy, identified “an evolving discussion about quality of care, especially concerning dying,” as one of his five predictions for 2010.
“The…argument about quality of care is now public. What's coming up next is a discussion about who should be in control, and what should happen, with patients who are much closer to death,” he wrote. “It's unclear as to whether throwing many more medical services at very, very ill people does them any good. It's clear that many people think that we do too much, not too little. There's been little discussion in the court of public opinion about this issue.”
In fact, the level of taboo surrounding discussions about end-of-life care was demonstrated last summer, when members of the US Senate proposed to pay physicians to discuss the topic with their patients. Protests about “death panels” and “pulling the plug on Grandma” were so loud that that the idea was pulled from the Senate reform bill.
While the outcry may have had more to do with attempts to squelch health reform than thinking about end-of-life care, the fact that reform opponents were able to ignite such passion on the end-of-life issue shows how sensitive the topic is.
A provision to pay physicians for discussing end-of-life decision-making with their patients remained in the US House of Representatives' bill as of press time, but Ms. Stovall says she worries about whether it will remain: “I'm really concerned that we don't have grassroots demand for this—We're far from it.”
‘What Are They Talking About?’
In La Crosse, Wisconsin, where end-of-life planning has become standard over the last 25 years (see box), the controversy over paying physicians to talk with their patients about end-of-life plans had people “perplexed, puzzled, and dumbfounded,” said Bernard J. Hammes, PhD, a clinical ethicist in the Gundersen Lutheran Health System there.
“Most people reacted with a little bit of, ‘What are they talking about? Death panels?’” he said. “We've been doing this for years. People couldn't take most of this national furor over all of this seriously because they knew better.”
In contrast, in the rest of the country, physicians and patients both must overcome their discomfort with the topic before end-of-life planning will become standard. Ms. Stovall cited research that suggests that about 30% of doctors decline to give any prognosis to their patients. “I think we've set ourselves up here in the way we treat cancer. It's a bit of a formula for failure,” she said. “There are a lot of negative emotions associated with disclosing a prognosis and dealing with a patient and family at that level of distress—and doctors felt unequipped to handle it.”
Dr. Hammes, who has worked with physicians in Australia, Singapore, Canada, Germany, Spain, and throughout the US, said he believes physicians' discomfort stems, in part, from the fact that they have so many technological options at their disposal.
“It's made me think that the spread of medical technology has led all humans into the same dilemma: At what point is the next medical treatment too much?” he said. “We all recognize that there are huge variations in what people want at the end of their life, and some people might want quite aggressive care, and other people might want a very different approach, like a hospice approach.
“The tragedy comes when we mistreat people, either by providing too much care, or by providing too little care. At least one thing we can do to avoid that mismatch is by talking with people about what they would consider to be good care if they couldn't tell us and particularly if they aren't likely to recover.”
How would cancer care be different if end-of-life was a topic that is freely discussed? To find out, look no further than La Crosse County, Wisconsin, where death is viewed as a fact of life.
A study of 400 deaths in the county's two hospitals—Gundersen Lutheran Medical Center and Franciscan Skemp La Crosse Hospital—over seven months in 2007 and 2008 found that 96% of the patients had either a written advance directive or a Physician Order for Life-Sustaining Treatment that identified the patient's choices about medical treatments at the end of life.
In testimony to the House Ways & Means Committee last year, Gundersen Lutheran officials reported that patients with advance directives used about $2,000 less in physician and hospital services in the last six months of life.
More importantly, perhaps, physicians, patients and family members are spared some of the anguish of decision-making when death is approaching.
“The plans are virtually always available at the right place, and when we look at the relationship between the plans and the medical treatment decisions made in the last 30 days of life, we find a 99% consistency between plans and decisions,” said Bernard J. Hammes, PhD, Gundersen Lutheran's Director of Humanities.
One of the secrets to the success of the “Respecting Choices” program: Physicians are not responsible for asking their patients how they prefer to die. Over the past two decades, end-of-life planning has become routine for people who interact with health care providers in La Crosse.
“We rely on what I would describe as well-trained non-physicians,” Dr. Hammes said. “The people who do this are most often health professionals who are employed to help care for patients – nurses, social workers and chaplains.”
Another key to success: Because everyone in the community uses the same process for discussing and documenting end-of-life decisions, physicians at both hospitals can trust the document they find in the patient's medical record. That helps avoid second-guessing at a time when clear directions are most needed.
La Crosse started differentiating itself from the rest of the country in the mid-1980s when Dr. Hammes noticed a troubling pattern regarding three hemodialysis patients who had become incapacitated. Over a short period of time, he was called to do ethics consults to help their family members decide whether dialysis treatments should be continued.
“In each and every case, the family had no idea what the patient's values and goals were in terms of treatment because they had never previously discussed the matter,” he said. “It was disturbing to me, not only because we couldn't talk with the patient and weren't sure what the patient's wishes were, but because I saw how distressing this was for the family.”
He began designing a program to engage dialysis patients in end-of-life discussions. The idea was to initiate planning a few months after a patient's dialysis treatments started, after they had time to adjust to their new routine and while their health status was still fairly good. In most cases, he found patients able and willing to have a thoughtful discussion about the values that would inform their end-of-life choices.
In 1991, when Gundersen Lutheran and Franciscan Skemp were looking for ways to collaborate on a community-wide project, they decided to expand the Respecting Choices program. They developed a set of standards to help patients and their families plan for future healthcare decisions and a system that made sure those plans were used.
Respecting Choices is designed to go beyond filling out legal documents. Rather, the program seeks to help patients realize the kinds of decisions they or their family members might face in the future, understand the choices that would be available and help them align their choices with their own values and goals—and we want to help them to discuss the plan they created with their family and with their physician,” Dr. Hammes said.
The advanced care planning system, which to date has been shared with more than 70 organizations and communities across the United States and several sites internationally, includes a wide range of patient-support materials and professional training.
“What has evolved in La Crosse is a system which is much more sensitive to talking with patients and families about their wishes, recording that information, and taking those preferences into account when we have to make decisions,” he said. “It's a very patient-centered system, and it particularly increases people's comfort with end-of-life issues.”