Sourcebook : Improving Care for the End of Life : 5.0 Beyond the Living Will

Advance Care Planning for All Stages of Health and Disease

Many people believe that having a living will is a safeguard against unwanted medical treatment. Although living wills are useful, they do not guarantee that physicians and families will know what to do in a medical emergency, that wishes will be honored, or that patients will die with dignity and in comfort. Achieving these goals requires a continuous process in which patients and clinicians converse about changes in treatment goals, medical status, or preferences. One "advantage" of life-limiting diseases is the opportunity they afford to plan for future medical treatment and to make important decisions ahead of time, such as when to remove a feeding tube or forgo a ventilator. A disadvantage, however, is the way in which the health care system responds routinely to urgent situations.

For example, when a patient's heart stops, physicians and nurses will usually try to restart it. This process ensures that the moment of death will not be peaceful or prayerful; instead it will be a blur of hasty actions and strong measures. Although some patients will benefit from such measures, others - who will need a clinician's recommendation about the benefits and burdens of such attempts - will not. This latter group must note and plan for the measures they want taken. Otherwise, attempts at resuscitation are automatic.

One good reason for making advance care plans and directives is the opportunity to get the best responses to urgent situations. Another reason is that patients may want to direct certain aspects of care based on their particular values and priorities. Finally, some people want to make plans to protect their families from having to make troubling decisions for them. These three aims can be achieved when patients, families, and clinicians take time to consider what is likely to happen as the condition progresses and which treatments should be used - or not - when complications occur.

Beyond the basic benefits of advance care planning just described, federal law mandates that patients in institutions that receive Medicare or Medicaid funding be given information about state laws governing advance directives. The Patient Self-Determination Act of 1991 also requires institutions to educate staff and community members about the availability of advance directives. Finally, the law prohibits facilities from discriminating against patients based on whether they have an advance directive.

For several years, institutions and organizations nationwide have worked to improve advance care planning for all people, regardless of their health status - yet advance care planning still needs work. In some cases, the challenge will be to get physicians to talk to patients about the likely course of a disease and the decisions that must be made as it progresses. For others, the challenge may be to make sure patient wishes are known and accessible. Regardless of the particular challenge an organization faces, the ideas and strategies developed by other organizations may prove helpful.

Breakthrough Series teams tried several change strategies, and this chapter describes those strategies as well as particularly innovative or successful programs tested by other groups. This chapter highlights:

Setting institutional goals
Taking specific steps
Making patient wishes known and accessible
Involving the community
Creating opportunities for advance care planning
Educating health care providers
Addressing cultural differences

Innovators Need to Know
The activities undertaken by these and other groups demonstrate that given the opportunity, individuals and clinicians can have meaningful discussions about the difficult territory of death and dying, that advance care planning can affect patient care, and that the tools and information to direct such plans are available. Most groups in the Breakthrough Series found that they could quickly address problems in advance care planning and make a significant difference in how it was done. Use them as a model to begin improvements! Useful advance care planning requires an ongoing dialogue between the patient, his or her loved ones, and the health care team. Make advance care planning a routine part of health care; discuss it with all patients, the sick and the well, young and old, and keep the conversation going. Tailor the conversation to the patient's health status and clinical circumstance. Revise forms to reflect specific changes likely to occur during the course of a chronic fatal disease. Make a special effort to address the unique needs and concerns of underserved populations, such as the poor and minorities. Involve other community organizations in education efforts, including the local media, bar association, worship communities, and other health care organizations. Include advance care planning elements in computerized databases and systemwide records (e.g., generate reminders to staff). Encourage insurance plans and managed care organizations to promote advance care planning efforts among their beneficiaries.

Innovators Need to Know

The activities undertaken by these and other groups demonstrate that given the opportunity, individuals and clinicians can have meaningful discussions about the difficult territory of death and dying, that advance care planning can affect patient care, and that the tools and information to direct such plans are available. Most groups in the Breakthrough Series found that they could quickly address problems in advance care planning and make a significant difference in how it was done. Use them as a model to begin improvements!

Useful advance care planning requires an ongoing dialogue between the patient, his or her loved ones, and the health care team.
Make advance care planning a routine part of health care; discuss it with all patients, the sick and the well, young and old, and keep the conversation going. Tailor the conversation to the patient's health status and clinical circumstance.
Revise forms to reflect specific changes likely to occur during the course of a chronic fatal disease.
Make a special effort to address the unique needs and concerns of underserved populations, such as the poor and minorities.
Involve other community organizations in education efforts, including the local media, bar association, worship communities, and other health care organizations.
Include advance care planning elements in computerized databases and systemwide records (e.g., generate reminders to staff).
Encourage insurance plans and managed care organizations to promote advance care planning efforts among their beneficiaries.

5.0.1 Case Study - Gundersen Lutheran Medical Center
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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 ].