Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 12.0 Using Law and Policy to Improve End-of-Life Care

Any change is resisted because bureaucrats have a vested interest in the chaos in which they exist.
--Richard M. Nixon

Dr. S is the coroner and family practitioner in Sleepy Town, USA. In most years, one dead body is pulled out of the river that flows past town; Dr. S has to declare death and do an autopsy. This year things are different: So far, 14 dead bodies have been hauled out of the river. Dr. S finally decides to look into what's happening, even though it's not really his job. At some point, he realizes, he has to redefine his job. He has to go upriver and figure out what is going on.

Like Dr. S, innovators aiming to improve their systems may need to go upriver. It is not always enough to focus on improving existing systems, since internal change alone cannot change external forces, such as Medicare reimbursement schemes or public policy. Even though it may not be part of the usual job description for health care workers, they may want to step back and think about the laws, regulations, financing mechanisms, and cultural barriers that block excellent care at the end of life. This chapter aims to direct these advocates to "go upriver" and define and address barriers to good care.

Health care is frequently the subject of federal and state legislation, which govern aspects of prenatal care, abortion rights, emergency services, and experimental treatments. End-of-life health care, however, has rarely been the direct focus of any federal or state regulations, other than laws governing patients' decision-making authority. There are no standards, for instance, governing how end-of-life care is provided to Medicaid and Medicare beneficiaries. There are no laws requiring that health care organizations collect and submit data about the circumstances in which patients die - even though most of those deaths are paid for with federal funds. There are not even national outcome standards surrounding Medicare-certified hospice care, although some efforts toward this end are now under way.

Influencing policy and legislation at all levels of government can be part of quality improvement in end-of-life care. Laws often arise in response to increased public scrutiny or demand, as has been the case with physician-assisted suicide. Unfortunately, this issue has detracted from the attention that should be focused on other equally compelling and difficult end-of-life issues, such as adequate pain relief or changes in federal laws that regulate how opioids are prescribed.

Important Legal Actions on End-of-Life Care

  • 1976: In Re Quinlan: New Jersey Supreme Court allowed parents of young woman in persistent vegetative state to remove her from a life-sustaining ventilator. Court authorized removal on a basis of a right to privacy.
  • 1983: Medicare Hospice Benefit: Providing reimbursement for hospice programs caring for the terminally ill.
  • 1986: Bouvia v. Superior Court: California Court of Appeals found that a 27 year-old competent woman with severe cerebral palsy had the right to forgo life-sustaining treatment.
  • 1990: Cruzan v. Director, Missouri Dept. of Health: The U.S. Supreme Court decided that states are free to adopt evidentiary standards to indicate when a family member can make end-of-life decisions for one unable to do so. Five justices recognized a constitutional right of competent people to refuse life-sustaining treatment.
  • 1991: Congress passes the Patient-Self Determination Act (PSDA): The PSDA mandated that health care institutions receiving Medicare or Medicaid funding give patients written information about their right to participate in medical decision making and write advance directives.
  • 1997: Washington v. Glucksberg, Vacco v. Quill: The U.S. Supreme Court found, in two unanimous decisions, that there is no constitutional right to assisted suicide. The Court indicated that the issue is one that state legislatures should determine. Several justicesí opinions can be read as having established that Americans have a right to palliative care.
  • 1997: Oregon voters legalize physician-assisted suicide: Oregonians reaffirmed legalization of assisted suicide through a second voter referendum, becoming the first state in the country where the practice is legal.

Teams that work to push these and other issues into the public arena and onto the political agenda can create improvement through changes in our social and cultural views of death and dying.

In This Chapter

Innovators face challenges created by current law and policy. This chapter provides a brief history of legal actions in end-of-life care, then offers specific advice on areas for change, along with examples of successful programs and initiatives. Topics include:

What Innovators Need to Know

What is easy and routine is what happens. Making improvements in just one local health care system can be a daunting task. However, together we can press for major policy change.

  • Dying is, for the most part, publicly funded, and programs serving dying patients need to be accountable for the services they provide - or fail to provide.
  • Political, economic and social forces affect the way end-of-life health care is provided. Individuals can work to make these forces more positive, based in the reality of end-of-life, not the myth or the stereotype.
  • Innovators can push for change in their own communities - and at the state and federal level.
  • There are many Web sites where advocates can exchange ideas and innovations.

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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 ].

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