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Ensuring patients voices are heard at end of life

March 8, 2013



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 – 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 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. One is Bernard Hammes, director of medical humanities at 325-bed Gundersen Lutheran Medical Center in La Crosse, WI. He helped develop a program called Respecting Choices that clarifies end-of-life issues long before patients, families and doctors confront
them. The Respecting Choices advance care planning template is in widespread use by health systems throughout the United States and several foreign countries.

At Gundersen Lutheran, every dialysis patient is 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 unfolds. They are 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 is, “At what point would you no longer want dialysis to continue?”

According to medical literature, Hammes says that “half of the time when dialysis was stopped, it was a decision of someone other than the patient.” But at Gundersen Lutheran, “within a couple of years that problem went away,” Hammes says. “The solution was to ask patients. Ask them when they’re still capable. We call it ‘preventive ethics.’”
La Crosse leads the way. Changing health care dynamics 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,” Hammes recalls. 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. Eligible residents have an advance directive on file in the electronic health record shared by local providers.

“We target patients with serious medical problems and a high probability that their views will not be what we assume,” Hammes says. “What is important is not what decision patients make … the agenda is not to talk people out of medical care. … Most importantly, 99% 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 a comprehensive regional advanced illness management (AIM) program at 261-bed St. Charles Medical Center in Bend, OR.

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 AHA’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-oflife 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 AIM 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. Lifeprolonging 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 is the idea that you fill out this legal document and then you’re done,” Hammes says. “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.”

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.

“AIM is the right way to deal with patients,” says John Combes, M.D., an AHA senior vice president. “We should
introduce early on, that ‘We’re here for you, to reduce your suffering and to improve your quality of life.’” Weber is a principal of the Kila Springs Group in Placerville, CA, and a regular contributor to H&HN Daily, an online daily news service fo the AHA and Health Forum. This article first appeared in the February issue of Trustee magazine. The AHA’s reports, “Advanced Illness Management Strategies,” Parts 1 and 2, focus on three strategies – access, awareness and workforce – to deliver high-quality, coordinated care to patients at this stage of illness. To read them, click on: http://tinyurl.com/984oqoa.

By David Ollier Weber