Outside input growing for end-of-life care
Managed care, advocacy groups enter the debate
Ethics committees looking for help when defining palliative care, especially during end-of-life care, have found seemingly unlikely bed partners with managed care plans. That’s because health plans are looking at how their internal policies and procedures impact terminally ill patients and how the situation might be improved.
Also, patient advocacy groups help with educational resources and recommendations. Major health care institutions such as the Robert Wood Johnson Foundation in Princeton, NJ, and the American Medical Association in Chicago are turning their attention to palliative care and end-of-life issues.
In some cases, representatives from hospital and hospice ethics committees have participated in these conversations. However, ethics committees hoping to work with managed care on end-of-life problems will need to understand the overriding issue of public mistrust of managed care’s motives, which will shape any policies that health plans develop to address the end of life.
The Hospice Federation of Massachusetts in Norwood established a managed care task force this past spring to work with managed care organizations in the state on end-of-life issues and palliative care. Representatives from this task force met in November with case managers from the managed care organizations to explore common concerns and the lack of mutual understanding. One outcome from this dialogue will be educational forums for the two groups. Several health maintenance organizations in the state, including the Brookline-based Harvard Pilgrim, Fallon in Worcester, and Tufts in Med-ford also are looking internally at end-of-life issues. In Minne-sota, the Allina Foundation, the charitable arm of the corporate merger of Allina Health Sys-tem and the Medica health plan, has identified strategic priorities for its philanthropic efforts, including "the limits of life," explains foundation executive director Mike Christenson.
One priority is Project DECIDE Discussion of Evolving Choices in Dying and Ethics, focused on research on making end-of-life care more human and humane. DECIDE is a three-phase project consisting of 11 research partners and numerous public meetings to demonstrate ways of improving end-of-life care so that:
• treatment goals are clear;
• pain is relieved;
• loved ones are respected;
• the spirit is honored;
• technology is harnessed.
DECIDE’s first phase began with focus groups of dying patients, family members, and health professionals and a 1994 commissioned survey conducted by Louis Harris and Associates to determine people’s views on end-of-life decisions within the prism of managed care. Results of the survey and focus groups are summarized in The 17-Minute Report published by the foundation.
Issues being investigated by the foundation’s research partners during the second phase include:
1. How might cases better be handled when physicians and nurses believe a requested treatment is futile?
2. What is the impact on families and patients of a communitywide program to teach them about advance directives, such as living wills and durable powers of attorney for health care?
3. How can the development and distribution of a referral guide for physicians increase the utilization of hospice?
4. What are the obstacles to following and maintaining do-not-resuscitate orders when patients are transferred from nursing homes to hospitals?
5. What do the terms medically necessary and appropriate and necessary mean for health care coverage, and what are their policy implications?
6. How could physicians and nurses caring for critically ill patients more effectively express and collaborate on treatment decisions, thereby improving care?
7. How can a pocket-sized counseling guide help clinicians know what patients want addressed in discussions about resuscitation?
8. Will people complete advance directive documents if informed how to do so at work place seminars?
9. Do families of critically ill patients experience residual anguish as a result of the difficult decisions made about care at the end of life?
10. What effect will a hospitalwide ethics education program have on the ethical sensitivity of staff who work there?
11. How can the public be engaged in discussions of health care resource allocation?
Initial findings from the project’s research already have given providers and payers insight, Christenson says. "We learned about dying patients’ attitudes toward health care’s role in their care," he explains. "We believe the health care system should play some leadership role they [patients] die in our setting, they die under our guidance, they die in our rooms and on our machines, so it seems to me for that part of the experience we ought to be listening and reforming when necessary."
One survey for health professionals revealed varying views of care provided in the intensive care unit (ICU) setting, he says. Noticeable was the lack of communication between nurses and physicians caring for critically ill patients and patients who requested treatments in futile situations. "Nurses and physicians view the care provided in the ICU in different perspectives. Physicians and nurses agreed only 50% of the time on levels of aggressiveness of care."
The research validated the necessity for care conferences for ICU patients, Christenson says. These conferences should be attended by nurses, physicians, family members, and patients and serve as a way to talk about the care of critically ill patients, including the type of palliative care desired, he adds. Conferences can take place once or twice a week, but some patients might only have one before dying.
"One of the first things we learned 31¼2 years ago was that many insurers in the state did not offer the Medicare hospice benefit model for people under 65 and we were one of them. That changed quickly," he adds. As a result, patients can transfer to hospice for palliative or comfort care rather than staying in an acute care setting.
During phase three, the medical director of Allina’s HealthSpan home care and hospice program and HealthSpan hospice director will work with Christenson and the Project DECIDE team. Their goal will be to develop a systemwide model for addressing end-of-life care and suffering, creating opportunities to deepen the connection to hospice throughout the system.
In Nevada, government officials are teaming up with health care providers to develop a plan of action to help patients make informed choices concerning end-of-life issues and palliative care, says Beth Schrimpf, RN, chairwoman of the ethics committee at Saint Mary’s Regional Medical Center in Reno and a member of the state’s task force.
Nevada’s Office of the Attorney General created the Death With Dignity and Caring in Nevada task force last year. The result: a list of 15 recommendations involving education, training, legislative efforts, and increased public awareness, all aimed at improving the death and dying process. (See box at left for information on obtaining a list of recommendations.)
Some of the recommendations include education and training for health care providers beginning in January 1998; advance directive cards with computer information links to all health care providers; increased funding for creating two units within hospitals, an ICU and a palliative care unit; and discussion of advance directives during routine patient history sessions.
Nevada strengthens patients’ rights
One recommendation already in place was passage of a bill strengthening enforcement of advance directives, says Pam Howle, executive director of Death with Dignity and Caring. "What was presented in the bill and what actually passed are different, but it did pass this past session and went into effect on Oct. 1," Howle explains.
The law, known as the Bracelet Bill before passage, ensures that patients’ advance directives are carried out in the event they receive emergency care. The law provides immunity to emergency medical technicians and health care providers who do not provide life-sustaining procedures to patients.
One amendment tacked on to the bill limited the law to terminally ill patients with a six-month or less diagnosis. "We haven’t worked out the logistics yet of whether it will be a medical bracelet similar to the diabetes bracelets or something else, but the patient must have an indicator on their body," Howle adds.
"Hopefully this plan will help fill the gap that’s created when patients are admitted to the ICU and we regrettably find out later that they in fact have an advance directive," notes Schrimpf.
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