Trying to confront reality: The hard fact of mortality
Trying to confront reality: The hard fact of mortality
A significant end-of-life initiative taking place in California is called ECHO (Extreme Care, Human Options), a project of Sacramento Healthcare Decisions (SHD), a nonprofit citizens’ health care coalition.
After a three-year process of promoting community buy-in from the four-county Sacramento metropolitan area, ECHO last January issued its "Community Recommendations for Appropriate, Humane Medical Care for Dying or Irreversibly Ill Patients."
These recommendations are based on fundamental ethical principles in medicine, and they draw a clear distinction between cure-oriented care and comfort or palliative care interventions. The latter have a primary purpose of alleviating distressing symptoms and promoting "a more comfortable existence without prolonging the dying process or aggressively sustaining a quality of life that would be unacceptable to patients." The guidelines also offer indicators for when to offer comfort care and recommendations for improving communication about treatment decisions, as well as underscoring the legal right dying patients already have to refuse any treatment.
The guidelines got a huge boost late last year in the form of an endorsement by the California Public Employees Retirement System (CalPERS), which purchases health care for over a million state and local government employees, dependents, and retirees. CalPERS called on physicians, hospitals, and its ten contract HMOs to follow the guidelines. It also plans to share information on ECHO with all of its members, explains health information officer Bill Branch.
"We started out by calling ours a futility project. But that isn’t where we ended up, looking at the whole continuum of how end-of-life decisions are made," says SHD executive director Marjorie Ginsburg, MPH. "Futility is just one symptom of how poorly we do end-of-life care in this country." ECHO is now pursuing its next phase: developing collaborative approaches to educating health professionals in hospitals and other settings, she says, adding that "the CalPERS endorsement is fantastic."
In Colorado, two statewide projects with similar-sounding names are also pursuing end-of-life issues, although with a somewhat different focus. The Colorado Collective for Medical Decisions (CCMD) is developing medical futility guidelines, although "inappropriate treatment" is now the preferred term, says CCMD medical director Donald J. Murphy, MD.
Another project, the Colorado Collaboration on End-of-life Care (CCEC), funded by the Robert Wood Johnson Foundation, is pursuing a more upbeat set of goals aimed at improving end-of-life care, building on a mass meeting of interested citizens held in Denver last year. CCEC is promoting such projects as a resource directory for terminally ill Coloradans and a medical education program on pain management, in cooperation with the Colorado Physician’s Insurance Company. Doctors who complete this course will be offered a reduction in their malpractice insurance premiums.
"We would agree that we certainly need to improve palliative care and pain control," Murphy observes. "But in my opinion, that is not the fundamental problem." CCMD is trying to come up with "truly substantive definitions of inappropriate care, not just processes," although achieving real consensus and buy-in from health providers and the public is no small task.
Murphy’s project has drawn some suspicion from local right-to-life groups, who believe that life is sacred and should always be preserved. He also insists that economics and health care cost containment need to be an explicit part of the discussion on improving end-of-life care, despite their inherent controversy, because not to do so is irresponsible. "Some people don’t want to hear that, but there are going to have to be tough choices made" in allocating limited health care resources at the end of life.
"We as a society have not paused long enough to talk about the overall goals of medicine," he asserts. "We have not figured out how to deal with uncertainty in medical care. Health professionals, because of the strong emphasis on patient autonomy, tend to be waiters and waitresses when it comes to end-of-life care," offering a menu of treatment options rather than prescriptively recommending the preferred option. In other words, Murphy says, "We have not handled the hard questions of human mortality."
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