Hospice is not a place. Palliative care is not an alternative to full-bore curative medical intervention. End-of-life care does not mean simply the discontinuation of all treatment.
Unfortunately, too many people — including too many health care providers — still believe otherwise. Here's the undistorted picture:
Hospice is a service, a type of multidisciplinary care focused on keeping people physically and emotionally comfortable during the anticipated last six months of a terminal illness; it can be provided at home and, in many cases, it has been shown to extend life.
Palliative care is a specialty whose practitioners bring to bear expertise in the relief of severe pain and suffering; it can be appropriate for seriously ill patients at any age and in any setting, even when there is excellent prognosis for full recovery.
End-of-life care is a descriptive term for the ministrations a person receives, adult or child, in the last stages of an incurable condition.
Misconceptions about these key concepts continue to drive institutional and clinical practice in wrong directions. They condemn patients to painful but futile medical ordeals as life dwindles. They force conscience-stricken families to agonize on the horns of insoluble dilemmas. And they add costs unnecessarily, in a system that is strained to its budgetary limits.
Fortunately, a lot of people are making impressive headway in rectifying the situation.
Respecting Choices at Gundersen Lutheran
Among them, for example, is Bernard Hammes, a philosophy professor and clinical ethicist in La Crosse, Wis. From 325-bed Gundersen Lutheran Medical Center, Hammes has led the development of a program called Respecting Choices that aims to clarify end-of-life issues long before patients, families and doctors confront them. The Respecting Choices advance care planning template is now in widespread use by health systems throughout the United States and several foreign countries.
Hammes was teaching at the University of Wisconsin–La Crosse in the early 1980s when he was invited to help design an ethics curriculum for young doctors at Gundersen Lutheran. Soon he was invited to join consultations with physicians and families mulling difficult decisions about whether to continue dialysis when unresponsive patients had reached end-stage kidney failure.
"I remember three cases," he says, "in which we were asked to talk with the family to sort through the issues, and when we asked, 'What would he want?' or ' … she want?' they answered, 'We don't know!' And they would never know! And it was clear that no matter what decision the family made, it would not be an attractive choice. And there would always be a fair amount of moral distress.
"I came away," he continues, "thinking, 'How is it possible that we have a health system that delivers wonderful technology, but has no planned approach to asking people about their own care choices?"
By the end of the decade, things had changed dramatically at Gundersen Lutheran. Under a new Hammes–designed protocol, every dialysis patient would be invited to sit down within three months of diagnosis with a nurse trained to lead an earnest conversation — preferably in the company of family, a pastor or the like — about treatment preferences as the disease unfolded. Those would be documented and entered into the medical record, along with a power of attorney for health care decision-making.
The crucial question posed to the patient, he notes, was "At what point would you no longer want dialysis to continue?"
According to medical literature, he says, "half of the time when dialysis was stopped, it was a decision of someone other than the patient." But at Gundersen Lutheran, he reports proudly, "within a couple of years that problem went away. The solution was to ask patients. Ask them when they're still capable. We call it 'preventive ethics.'"
La Crosse Leads the Way
Meanwhile, recalls Hammes, changing health care dynamics had spurred leaders of Gundersen Lutheran and Franciscan Health Care, also in La Crosse and now part of the Mayo Clinic Health System, to explore "ways to legally collaborate." One suggestion was to work together to expand Gundersen Lutheran's dialysis protocol to bring advance care planning to the broader community.
Hammes chaired the task force assembled for this purpose, and out of it emerged the Respecting Choices program, now licensed to more than 60 organizations. It's built around a new role, advance care planning facilitator — a nurse, medical social worker, chaplain or other suitable professional trained to "have the conversation and document it" rather than relying on harried physicians to add another ticklish, time-consuming duty to their repertoire. The task force also developed new standardized forms, among them a rewrite of the official power of attorney drafted by the state legislature.
Today, you'd be hard pressed to find an eligible resident of La Crosse County who doesn't have an advance directive on file in the electronic health record shared by local providers.
"We compete for patients, but in advance care planning we work together fiercely," Hammes says. Result: Of the 400 patients who died in any care setting in the county during a seven-month period in 2009, all but 16 had a care plan in their EHR, and half of those who lacked one had spurned a request to complete it. Fully two-thirds of the deceased had a detailed POLST — Physician Orders for Life-Sustaining Treatment — on record as well.
"We target patients with serious medical problems and a high probability that their views will not be what we assume," Hammes notes. "What is important is not what decision patients make … the agenda is not to talk people out of medical care. … Most importantly, 99 percent of the plans are available in the place where those decisions are being made. In La Crosse, this is now the routine standard of care."
St. Charles Bends the Curve
Some 2,000 miles west, palliative care physician Laura Mavity, M.D., is adapting the La Crosse model to grow a comprehensive regional advanced illness management program at 261-bed St. Charles Medical Center in Bend, Ore.
AIM is a relatively new term that describes an integrated approach to patient-centered treatment planning that pushes crucial decisions about life support far upstream. It's the rubric under which Mavity won enthusiastic board backing for the portfolio of services anchored by palliative care she proposed as a new "center of care" at St. Charles in 2011.
As it happens, St. Charles president and CEO James Diegel was incoming chairman of the American Hospital Association's Committee on Performance Improvement in 2012. With his encouragement, the committee decided to address end-of-life care as an area in which hospitals, by adopting a more comprehensive model and pursuing evidence-based best practices, can realize major gains in service efficiency, clinical quality, and patient and family satisfaction. Those, the committee noted, are the hallmarks of a hospital system rounding into the value-based "second curve" of health care delivery.
In this context, however, Diegel wasn't satisfied with the term "end-of-life care." "We realized it's really limiting," he says. "And 'palliative care' doesn't fully describe it either. What about all the activity that goes on before, on the patient's journey from episodic disease to chronic illness to palliative care to hospice? … We thought 'advanced illness management' … which had already popped up in our organization, with credit to Dr. Mavity … we thought that was the label that best captures the four phases of what we're trying to accomplish."
There are four stages in advanced illness management, Diegel explains.
- When a disease is first diagnosed, people are usually still basically healthy. Illness is treatable, even reversible. This is when they should start talking with intimates about life goals, consider downstream treatment preferences and sign an advance directive.
- The symptoms of disease are more apparent but remain manageable. Life-prolonging therapies can be effective, and palliative care may help to improve the quality of life.
- Complications are more frequent, symptoms are resistant to amelioration and the prognosis is bleaker. Palliative care takes on a central role.
- With life expectancy numbered in months, the patient qualifies for and can benefit from hospice.
At each step along that pathway, notes Hammes — a consultant to the AHA committee as it investigated AIM strategies — patients and providers should revisit the advance directive.
"One of the big mistakes," Hammes says, "is the idea that you fill out this legal document and then you're done. But people are likely to weigh the burdens and benefits [of treatment options] differently at different stages. We need to keep up with patients' changing experiences. It's all about having ongoing conversations."
From about 200 inpatients seen at the Bend hospital in 2009, Mavity reports, the AIM/palliative care caseload swelled to 500 in 2012, with more than 50 additional outpatients seen at regional clinics, skilled nursing facilities or in their own homes.
"We're probably not even reaching 50 percent of the people who need our services," she says. "So part of what we have to do is make sure we do the work we do but continue to up the ante." Her team has hosted informational and brainstorming retreats for the region's hospices, home health agencies and primary care physicians; two hospice medical directors since have become board-eligible in palliative medicine.
"Our success and rapid growth is 100 percent because of our leadership's support," Mavity stresses. "This work is time-intensive … it's not something that's high revenue-earning … but it's part of the soul of the St. Charles Health System."
Forging Links in Vermont
Community outreach to raise awareness of the benefits of advance planning, palliative care and hospice services is one of three key elements of AIM strategy, the AHA committee concluded. A second is expanding access through dispersal of services systemwide and the formation of local partnerships. Thirdly, the workforce must be taught to identify patients who would benefit from AIM, to explain and promote AIM services, and to coordinate their effective, multidisciplinary delivery.
In northern New England, under the leadership of palliative and hospice care physician Allan Ramsay, M.D., Fletcher Allen Health Care has addressed those strategic requisites through the grant-funded formation of a telemedicine network. Small outlying hospitals and doctors in Vermont and upstate New York are linked via videoconference to palliative care experts at the system's Burlington-based University of Vermont teaching hospital. (Ramsay since has joined the state board charged with designing a single-payer health system to cover every Vermont resident.)
Fletcher Allen bolsters the network with a 24/7 hotline that enables doctors in rural settings to set up palliative care telemedicine consultations with the Burlington team on short notice before seriously ill patients are transferred by ambulance or helicopter from their home community. The outcome may be a decision to spare the patient the harrowing dislocation and the ordeal of further hopeless tertiary interventions, says Ursula McVeigh, M.D., who has succeeded Ramsay as Fletcher Allen's medical director of palliative care. Uniquely among states, palliative care is on the menu at every hospital in Vermont.
Every Wednesday, a teleconference brings together doctors from around the state to discuss aspects of AIM and earn free continuing medical education credits. There are regular telemedicine discussion groups. And there are virtual site visits through which doctors in distant locales can attend lectures and case conferences with their Burlington peers.
Changing the Culture
Doctors in training are "like baby chicks," says Diane Meier, M.D. "They're imprinted by the first thing they see that moves."
In a recent paper published by the Dartmouth Institute for Health Policy and Clinical Practice, titled "What Kind of Physician Will You Be?," Anita Arora, M.D., and Alicia True looked at data from 23 major U.S. teaching hospitals — including comparative variations in the management of chronic illness and end-of-life care.
At Johns Hopkins Hospital in Baltimore, they found that one of every two Medicare patients who died of a chronic illness in 2010 was enrolled in hospice during the last six months of life. In contrast, at Mount Sinai Medical Center in New York City, fewer than one in four received hospice care, the lowest proportion among any of the hospitals studied.
"A Mount Sinai resident," they noted, "may, therefore, learn a higher threshold for referral of a patient to hospice or may decide to explore more aggressive treatment approaches first. Meanwhile, a Johns Hopkins resident may be better trained in having discussions with patients about their preferences for end-of-life care."
Ironically, Mount Sinai has one of the most robust palliative care programs in the country, in large measure thanks to Meier, who heads the influential Center to Advance Palliative Care. So, why are dying patients at her institution more likely to be poked and prodded by upward of 10 different physicians in their final months than to be offered the respite of hospice?
First, Meier says, Mount Sinai's rate of hospice referral has actually doubled in the past several years — "up from 10 percent." She adds that New York overall has one of the lowest hospice enrollment rates among the 50 states. Moreover, she says, the ethos at research-oriented institutions like Mount Sinai is "'Go, go, go; treat, treat, treat!' We're still dealing with a practice culture that sees death as failure."
How can that be changed?
"By my generation of doctors retiring and getting out," she says. "The way we were trained is no longer relevant."
Nationwide the number of palliative care teams has grown by 150 percent since 2000, Meier notes, "which is great if you're in a hospital. The challenge is to spread the same principles and practices to all other settings."
That is a core piece of AIM strategy, along with educating the public on the utility of making end-of-life plans well before the end of life and equipping front-line providers with the tools and training to intervene appropriately as disease progresses.
"Palliative care, the advanced illness management model, is all about seeing the patient as a person, not as a disease," Meier says.
"AIM is the right way to deal with patients," echoes John Combes, M.D., president and COO of the AHA Center for Healthcare Governance. "We should introduce early on, that 'We're here for you, to reduce your suffering and to improve your quality of life.' Part of where we've lagged is in not having those conversations," he says. "I hate to see AIM taken out of context. It's how we should be caring for all patients."
David Ollier Weber is a principal of the Kila Springs Group in Placerville, Calif., and a regular contributor to H&HN Daily.
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