Advocate for regional and federal health care report cards that include end-of-life issues.
Many public and private organizations are setting standards for health care provided in managed care settings so that employers and the elderly can select the best plans. The National Committee for Quality Assurance (NCQA), the voluntary association for quality in managed care plans, has a set of quality measures it calls HEDIS (Health Plan Employer Data Information Set). In the most recent version, HEDIS 3.0, NCQA was interested in including quality measures focused on the end of life. However, none were found to have been used enough to ensure a definite link between health care providers' behaviors and better quality.
The Foundation for Accountability (FACCT), which aims to help large purchasers of health care, including Medicare, to purchase high-quality care, has named end-of-life care as one of its priority areas for development. FACCT gathers data to communicate a wide range of information about quality to consumers and to create condition-specific quality reports.
Some state and federal agencies have developed consumer report cards for different kinds of medical care, such as mental health care; others have created consumer report cards to rate managed care firms operating in their states. Benefits managers, employers, and health care consumers can push to add end-of-life issues, such as pain and symptom management, to these report cards.
Push for laws that address genuine choice at the end of life, rather than the appearance of choice.
The focus on physician-assisted suicide, which could offer patients only the "choice" of either suffering terribly until they die or causing their own death, has stifled debate around real choices - such as where to die, which medications to receive, and how to access appropriate services.
Expand content of advance directives.
Many state advance directive forms are limited to clear-cut decisions, with no room for the uncertain times that accompany the end of life. Most forms do not, for instance, include blanks for people to say that they would be willing to undergo a trial on a ventilator for a week before having it removed. Directives can be expanded to include more information and more choices that reflect the continuum of serious and eventually fatal illness. (Chapter 5 details ways to improve advance care planning.)
Fund public forums, newsletters, and hearings about end-of-life issues.
Your organization can organize public forums - town meetings - where individuals can gather to talk about end-of-life issues. Approach local chapters of disease organizations, such as the American Cancer Society or the American Heart Association, and ask to be included on the agenda for their next meeting. Talk to local business organizations, such as chambers of commerce or voluntary groups, and get on their agendas. Team members or representatives can approach their state legislature to request a public hearing on the state of end-of-life care in the community. The possibilities are there - and increased public interest in the subject is likely to generate some turnout.
Work with state end-of-life commissions.
By early 1998, at least 30 states had established commissions or task forces to examine end-of-life care issues. Attorneys general, governors, private organizations, the medical community, and individuals spurred the formation of many of these panels. In at least six states - California, Colorado, Illinois, New Jersey, Tennessee, and Virginia - law or legislative resolutions mandated that panels be created. These groups are charged with assessing historical and current practices, educating health care professionals and consumers, examining the effect of law on end-of-life care, providing resources, and piloting new programs, among other activities. A list of sites that have received grants from the Community-State Partnerships to Improve End-of-Life to establish such bodies can be found at the Web address http://www.mid.bio.org/npo-map2.htm.
Talk to the media about improvement efforts under way - or problems in end-of-life care in the community.
The media is receptive to stories about organizations that have improved care of the dying, especially when stories include ways that patients' lives were changed. Doing a good job of caring for society's most vulnerable people makes for good press and publicity. Members of the community - many of whom fear dying in pain - will be relieved to hear that a local organization is doing more to care well for the dying and to make good care the norm.
12.2.1 Case Study - U.S. Department of Veterans Affairs
12.2.2 Case Study - Minnesota's Revised Advance Care Planning Forms
12.2.3 Case Study - Illinois Coalition for Improving End-of-Life Care
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].