Cover Story
Personalized Medicine
Without guidance from patients, medicine sustains life at any cost.
By Howard Bell
“When your mother with advanced dementia arrives at the ER with another aspiration pneumonia, the ER proceeds on the supposition that she wants to be rescued or she wouldn’t be there,” says Craig Bowron, M.D., a hospitalist at Abbott Northwestern Hospital in Minneapolis. Then in the ICU, they assume she was brought there because she wants aggressive intervention, so they put her on a ventilator, even though that’s maybe not what she or her family would want if they had a chance to talk about it. But she’s sick, and she can’t speak for herself, and something needs to be done—and it will.
“Hospitals are medical machines,” Bowron says. “We’re in the business of keeping people alive. And when the momentum is there to prolong a life, it’s hard for the family to say no.” Without guidance from patients, they do their jobs, which is to sustain life.
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Honoring Choices is partnering with Twin Cities Public Television and the Citizens League to promote conversations about end-of-life care.
Their first effort is a series of videotaped interviews with individuals from around the state about specific end-of-life issues. The clips may be viewed at www.TPT.org (type “Choices” in the search box). A public engagement campaign will begin this spring.
Get the Forms To learn more about Honoring Choices Minnesota or download a copy of the advance care planning form, go to www.metrodoctors.com and click on “Honoring Choices Minnesota.” To download a copy of the POLST form, go to www.mnmed.org and click on “Key Issues” and “POLST Communication.”
Having the conversation
One way to broach the topic of end-of-life care is to make it part of the conversation with patients during routine clinic visits. “Just like we routinely ask patients about their allergies and medications, we need to ask if they have an advance directive and, if not, would they like to take one home or talk to one of our facilitators about it,” says Kenneth Kephart, M.D., a Fairview Health Services geriatrician and Fairview’s physician leader for Honoring Choices and POLST, two initiatives underway in Minnesota.
Honoring Choices pilot studies showed that people are most willing to discuss advance care planning outside of hospitals. That’s why facilitators are being trained to initiate advance care planning in homes, churches, nursing homes, and community centers. “Our hope is to engage the public to do as much advance directive planning outside clinics and hospitals as possible,” Kephart says.
A way to make the topic seem routine is to ask patients if they’d like to update their advance directive at relatively innocuous times, such as when they check in for an appointment or come in for a routine screening. Edward Ratner, M.D., a University of Minnesota expert on advance directives, says it’s especially important that patients make their wishes known in writing (and that they’re included in their medical record). “You didn’t need POLST 30 years ago when your primary care doctor saw you in the clinic, the hospital, and maybe at home,” he says. Today, however, it’s important that the information be available at hospitals and nursing homes, and to physicians, emergency medical services providers, and others who might have contact with patients during critical times.
“Physicians traditionally played a pastoral role during the end of life, according to Beth Virnig, Ph.D., M.P.H., a professor of health policy and management at the University of Minnesota. “We need to teach physicians that such a role is entirely compatible and complementary to life-sustaining technologies when the two are used together wisely.”
But training health care providers to do advance care planning is still not an educational priority, according to Victor Sandler, M.D., a geriatrician and medical director of Fairview’s hospice and home care programs who routinely works with students and residents. “We need to get doctors up to speed; but we also need to train nurses, therapists, chaplains, and social workers how to have these discussions.”—H.B.
Who Decides?
The recent case of 85-year-old Al Barnes of Scandia, Minnesota, highlights the difficult issue of who should be able to determine what is and is not appropriate when it comes to end-of-life care. According to news reports, Barnes was diagnosed with respiratory failure, renal failure, and dementia and had been in eight hospitals since the beginning of 2010. Although multiple doctors have stated Barnes has no hope recovering, his wife, who is his proxy, has continued to insist that everything possible be done for him because she believes his condition is treatable. And she claims she’s simply honoring her husband’s stated wishes. A doctor from Methodist Hospital went to Hennepin County Court in January seeking to replace Barnes’ wife with a substitute decision maker, arguing that his wife was making reckless and futile decisions in an attempt to prolong her husband’s life.
From the Minneapolis Star Tribune, January 19, 2010, www.startribune.com
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Such end-of-life care is expensive. In 2009, Medicare spent $55 billion on doctor and hospital bills for patients during their last eight weeks of life, according to the Dartmouth Atlas of Health Care, which examined national health care expenditures for the Medicare population. In addition, Dartmouth researchers found one-third of all Medicare payments are for the care of patients with chronic illnesses during their final two years. Much of that goes toward physician and hospital fees associated with repeated hospitalizations. “The average Medicare death costs $50,000 during the last six months of life for patients with common chronic diseases, and that doesn’t include hospice costs,” says Edward Ratner, M.D., a University of Minnesota geriatrician and expert on advance directives and end-of-life care. “It’s typically expensive and intensive treatment that often postpones death for only a short time.”
Spending that money might be acceptable if patients got the kind of care they wanted and if that care improved their lives, but too often neither is the case, according to Victor Sandler, M.D., a geriatrician with Fairview Health Services and medical director for its hospice and home care programs.
Providing less aggressive care for patients who have an advanced chronic illness or who are terminally ill does not shorten life, says Sandler. He cites several studies on hospice and palliative care. “In fact,” he says, “providing hospice and palliative care instead of aggressive treatment, on average, prolongs a patient’s life longer and almost always improves the quality of life of patients and their families. And it happens to cost less.” Research from the Dana-Farber Cancer Institute published in the October 2008 issue of the Journal of the American Medical Association suggests aggressive care during the months before death is associated with a poorer quality of life for patients and a more difficult bereavement for families.
“Sometimes the only thing worse than dying is being kept alive,” Bowron wrote in his January 11, 2009, Washington Post essay “The Dying of the Light: The Drawn-Out Indignities of the American Way of Death.” He described taking care of the dying elderly as the most difficult thing he does as a physician. “Among the patient care team,” he wrote, “there is often a palpable sense of ‘What in the world are we doing to this patient?’” Centers for Disease Control and Prevention and Dartmouth Atlas statistics show that although 80 percent of Americans say they want to die at home, pain free, surrounded by family and friends, only about 25 percent do. The rest of us die in hospitals, often alone and uncomfortably attached to tubes and machines. “Unnecessary and nonbeneficial care,” Bowron said in an interview, “is moral and financial lunacy.”
But futile end-of-life care has become the well-intentioned standard. And that is largely because patients and their families haven’t made their wishes known, according to Ratner. “If there is no advance directive—either a piece of paper or a conversation—the default is to do everything medically possible whether or not a patient wants it.”
Traditional advance directives that have been around for more than 25 years were supposed to take the guesswork out of treating patients at the end of life, but they’ve been underused, Ratner says. “Only about 20 to 30 percent of people have an advance directive,” he explains. Of those who do have one, many times the documents cannot be found when they are needed; in some cases, families aren’t even aware of them. He says even if advance directives are found, they’re often not followed because families are reluctant to do so or because the form doesn’t address important treatment decisions such as whether to administer IV fluids, artificial nutrition, or antibiotics.
Two new initiatives—Honoring Choices Minnesota and Provider Orders for Life-Sustaining Treatment (POLST)—are attempting to narrow the divide between the kind of end-of-life care Minnesotans say they want and the kind they actually receive.
Honoring Choices
Honoring Choices Minnesota is a Twin Cities-area initiative that when fully implemented will make advance directives available to all adults, make them accessible whenever and wherever they are needed, and ensure that health professionals follow them. Spearheaded by the Twin Cities Medical Society and the East and West Metro Medical Society Foundations, it began in January of 2008.
The impetus for Honoring Choices came from former East Metro Foundation president Robert Moravec, M.D., who had long observed the problems families and patients have with end-of-life decision making, according to Kent Wilson, M.D., the foundation’s current president and Honoring Choices medical director. “He also noticed that advance directives not executed with professional help are often vague, confusing, and contradictory,” Wilson says. With Moravec’s urging, East Metro took on the leadership of the Honoring Choices project.
The initiative is based on a nationally recognized advance care planning model that was created in 1993 by Gundersen-Lutheran Medical Center in LaCrosse, Wisconsin, and is now used by nearly 60 health care systems nationwide. Gundersen’s program is a communitywide effort that educates the public and health professionals about advance care planning. It makes advance directives available to all adults regardless of age, and it makes them portable and accessible to all area medical professionals.
The forms are just one part of an application embedded in Gundersen’s electronic medical record. The application aids with all advance care planning practices, including orders for hospice and palliative care; it also guides practitioners on how to initiate end-of-life planning conversations and allows them to document in the EMR that a patient was given advance care planning education. It also helps them make referrals to facilitators trained to engage patients and families in end-of-life decision making.
“We’re transplanting Gundersen-Lutheran’s model to the Twin Cities because it worked in LaCrosse,” says Wilson. Ninety percent of LaCrosse County residents who die while under the care of a physician in that county have a written advance directive, according to a retrospective study published last summer in the Journal of the American Geriatric Society. Ninety-nine percent of those advance directives were found in the patient’s medical record at the institution where the patient died, a trend that has continued over 12 years.
By honoring patient and family wishes, the program reduced end-of-life care costs by an average of $3,500 for patients who received inpatient palliative care, according to Gundersen’s internal studies, which also show that patients with advance directives use, on average, $2,000 less in physician and hospital services during the last six months of life. Hospital readmission rates are also lower: six percent for those patients with an advance directive compared with 18 percent for a control population. In addition, patients who had an advance directive reported high rates of satisfaction with the care they received before their death, as did their families. As a result, Gundersen-Lutheran ranks near the bottom nationally in terms of Medicare costs for treating patients with chronic diseases during the final two years of their lives; at the same time, Medicare ranks it as a high-quality provider as measured by outcomes.
Wilson says what makes Honoring Choices unique is its emphasis on training people to engage patients and families in end-of-life conversations. “The focus is less on the form and more on the conversation facilitators encourage patients to have with their families and physicians,” he says.
All Twin Cities health care systems are now participating in or are in the process of implementing Honoring Choices, according to Wilson. Nearly 500 nurses, nurse practitioners, social workers, chaplains, physicians, physician assistants, and members of inpatient palliative care teams have been trained to facilitate such conversations. Wilson and others will be training additional facilitators in long-term care settings, churches, and businesses. (As the electronic medical record systems used by health care systems in the Twin Cities become interoperable, patients’ advance directives will be accessible to staff from all organizations within those systems. For now, paper copies are shared.) In addition, Honoring Choices will sponsor a three-year series of events including public television programs about end-of-life care planning.
Last year, participating systems completed six-month pilot programs, testing Honoring Choices in specific settings such as hospice or home care. Another round of six-month pilots began in January. The point of the pilots, according to Wilson, is to figure out workflow—who does what, when, and how in order to accomplish advance care planning. “At this point, we don’t have data on how frequently directives are honored or whether costs were reduced,” he says. “But we did learn that many patients are interested in advance care planning, and they are more open to talking about it outside the hospital, where they may be in the middle of an acute care situation.”
POLST
Whereas Honoring Choices is for now a Twin Cities initiative, POLST is a statewide effort. And instead of targeting all adults, POLST is designed for patients already diagnosed with a serious chronic illness, the frail elderly, and nursing home residents. POLST was initiated by the MMA’s Ethics Committee and endorsed by the MMA, Minnesota Nursing Home Association, Minnesota Network of Hospice and Palliative Care, Minnesota Emergency Medical Services Regulatory Board, and CareChoice, which represents nursing homes, assisted living, and senior housing facilities across the state.
The POLST form is already used widely in several states, including Oregon and Wisconsin, and a similar form has been used for several years by Allina Health System and at Duluth’s three major medical centers, according to Ratner. All of the Twin Cities health systems that are collaborating on Honoring Choices are in the process of implementing POLST, says Kenneth Kephart, M.D., a Fairview Health Services geriatrician and Fairview’s physician leader for Honoring Choices and POLST. “Like everyone else,” he says, “we’re in the process of figuring out the workflow for both of these initiatives.”
POLST forms are medical orders, signed by a physician, that become part of a patient’s medical record. The easily recognized one-page double-sided form can be prominently posted on a refrigerator, a wall, or in a nursing home chart as well. The idea, says Ratner, is to ensure that a seriously ill person’s wishes about life-sustaining treatment are known and honored across all health care settings. Like Honoring Choices forms, POLST forms can be revoked or updated at any time such as when a patient transfers from one care setting to another, their health or marital status changes, or their medical preferences change.
The POLST form also indicates whether the patient wants to be taken to the hospital in an emergency. “Right now, we don’t ask that,” Sandler says. “We just ask about do-not-resuscitate wishes. So they automatically go to the hospital even if they prefer staying where they are and receiving only comfort care.”
POLST forms are treatment-specific, and should be completed even if a patient has a traditional advance directive. “It more specifically answers the questions we need to be asking patients and families: How aggressively do you want us to treat you in an emergency, and who needs to be involved in life and death decisions?” Ratner says.
In mid-January, Ratner and others began training nurses, social workers, and nurse practitioners in nursing homes around the state to use POLST forms and initiate end-of-life conversations with patients and families. Ratner, who is on the MMA’s Ethics Committee, is also charged with evaluating the effectiveness of POLST and Honoring Choices. He hopes to see significant use of POLST especially by hospices, nursing homes, and home health care providers within the next three years.
An evaluation of POLST’s effectiveness in 180 Oregon nursing homes over 10 years showed that residents’ DNR wishes were honored 100 percent of the time. According to statistics from that state, use of antibiotics, IV fluids, and feeding tubes matched residents’ wishes 86 percent, 84 percent, and 95 percent of the time, respectively. In addition, 35 percent of Oregonians die at home, compared with 25 percent nationwide. “But even when they die in the hospital,” Ratner says, “far fewer get the aggressive interventions they didn’t want.”
Paying for end-of-life planning
In January, the Obama administration, reversed its course and announced it would revise a Medicare regulation by deleting references to paying for end-of-life planning done by physicians or their staff during annual wellness visits.
The move came just days after the policy took effect on January 1. Administration officials cited procedural reasons for changing the rule. However, it was clear that political concerns were also a factor. Renewed debate over advance care planning threatened to become a distraction to administration officials who were gearing up to defend the health law against attack by the Republican majority in the House.
Although the Patient Protection and Affordable Care Act does not mention end-of-life planning, the topic was included in a Medicare regulation that set payment rates for thousands of physician services.
Medicare already reimburses physicians who counsel patients about advance care planning during palliative care consultations, says Edward Ratner M.D., a University of Minnesota expert on advance care planning.
Meanwhile, some Minnesota health plans have created payments or incentives for end-of-life planning. According to Ratner, UCare covers advance care planning consultations. Nearly all insurers reimburse physicians at Allina hospitals in the metro area for inpatient palliative care consultations.
Blue Cross and Blue Shield of Minnesota offers incentive payments for advance care planning at four metro-area health systems. In addition, a state program for seniors on Medical Assistance or both Medicare and Medical Assistance requires advance care planning.—H.B.
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Overcoming Obstacles
Health care professionals generally agree that anything that encourages people to make their end-of-life wishes known is good. But the fact is both patients and physicians are often reluctant to talk about the issue. “The physician is waiting for the patient to raise the subject and the patient is waiting for the physician to raise it,” says Sandler, who makes a point of discussing end-of-life wishes with his patients and documenting those discussions in the medical record. “Too often, the conversation happens too late, after a great deal of undesired and unnecessary medical treatment has been delivered.”
Many patients don’t want to burden their families with such talk. “Overwhelmingly, patients tell me they don’t want tube feedings or ventilators used to prolong their lives if they have no hope of eating or breathing on their own,” Sandler says. “They just want to go home and not be attached to tubes. They’ll often tell us these things, but they won’t tell their family.”
Even those who do want to talk about it can’t predict what their death will be like or how they’ll feel near the end, Bowron points out. “Most of us aren’t imaginative enough to know how we’ll feel on dialysis or a ventilator or hooked to a feeding tube,” he says. “It’s impossible to write a document that predicts the absolute end moment.”
In many cases, physicians are another obstacle to discussing end-of-life care. “They’re trained to fix things,” says Beth Virnig, Ph.D., M.P.H., a professor of health policy and management at the University of Minnesota. “There’s always one more thing to try, and they don’t like telling you they can’t fix it because their job is to fix it.” Virnig conducted a national survey of 4,000 physicians who care for patients with cancer. The results, published last February in the journal Cancer, show that most physicians delay end-of-life care discussions or avoid them altogether. “We weren’t surprised by the survey results,” she says. “What I’m hearing is that most docs want nothing to do with having these end-of-life conversations.”
Bowron says after his Washington Post essay was published, he received dozens of emails from frustrated patients and families describing how they felt their physicians had steamrolled them. “We said no feeding tubes or antibiotics for Dad who’s in the nursing home with advanced dementia; then the family walks into his room and there he is hooked to a feeding tube and IV antibiotics. Well, we thought he had a bladder infection, is the nursing home’s response,” Bowron says, referring to the comments he received.
Some specialists such as oncologists and cardiologists can be especially reluctant to talk about end-of-life care, according to Kephart, because they’re fearful that it will rob patients of hope. “Studies show that’s not the case,” he says. “Nevertheless, it’s important to not send mixed messages to seriously ill people.”
Fear of litigation from family members is another reason why some physicians shy away from discussing and following advance directives, according to Ratner. However, he points out that Minnesota statutes protect physicians who follow instructions in a valid health care directive.
Cultural values also can stymie end-of-life decision making. “We have a predominant cultural viewpoint that people
should live as long as they can by any means available,” Ratner says. This view that it’s somehow morally wrong to not keep doing everything possible creates contradictory thoughts and emotions that make it hard for patients and families to know for sure what they want. “We are still a death-denying culture,” Bowron says. That’s partly because medical advances create a façade that death is a choice, when really the only thing we have a say in is the circumstances of how we die, he points out.
In addition, some religious and advocacy groups believe people should be kept alive as long as possible by any means. “They’re entitled to have that opinion for themselves,” Ratner says. “But they don’t have the right to impose that opinion on everyone else. It comes down to one question: Do people have the right to make their own choices, or should a religion or government decide for them?”
As for those who claim advance care planning is just a back-door way to cut costs, Sandler points out that “nobody benefits from spending money on care nobody wants. Everyone agrees we have to do something about the trillions of dollars of unfunded liabilities Medicare will have in years to come, and there’s no better way to do that than by eliminating care people don’t want in the first place. Studies show that better end-of-life care gives patients and families a higher quality of life and it happens to cost less. It’s a win for everyone.”
In the end, Bowron says it boils down to a simple formula: “Physicians need to learn to do what patients want, and patients need to tell us what they want.” MM
Howard Bell is a medical writer who lives in Onalaska, Wisconsin.