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

Sourcebook : Improving Care for the End of Life : 5.4 Recognize Opportunities to Address Advance Care Planning

There are many settings in which advance care planning can and does occur, such as:

In the context of this book, advance care planning revolves around dying patients. However, advance care planning can occur at many points, which the following table illustrates.

Table 5.1 Putting Advance-Care Planning into Action
Health Status ExamplesRecommended Content of DiscussionsAction ItemsCommunication Strategy
Healthy Surrogate

Outcome states

Atypical beliefs or preferences
May complete durable power of attorney document

Should include preferences regarding long-term artificial hydration and nutrition
"Is there anything I should know about you that might affect what medical treatment you would want?"

"If you become too sick to tell me what you want done, who would "you like me to speak with?"
Diagnosed with a serious illness Surrogate

What is important for you/what are your goals

Adverse outcomes

Time-limited trials

Likely outcomes
Same as above

MD discusses prognoses and outcomes with and without recommended treatments

MD talks to surrogate
"You will recover almost completely from this stroke. We are going to treat you with blood thinner to reduce your risk of a further stroke. However, this risk is not zero. It is important to plan ahead. Do you have any concerns or thoughts about your medical care if you should get a condition where we did not expect a good recovery?" "Unlike what you see on TV, CPR is rarely effective when you have a serious illness, such as stroke."
Limited life expectancy on the basis of disease or of age alone. More explicit conversation about outcomes and courses with treatment options Same as above

State specific preferences and formulate contingency plans for urgent complications (CPR, shortness of breath, fever, etc.)
"Mrs. M, your breathing is really a problem for you almost all of the time now. Tell me a little about your thoughts. What do you think will happen? What do expect the end to be like? "Mrs. M, you said that you want medical care to focus on comfort. Even if you get more short of breath, you want to stay at home. Is that correct? If you do get short of breath, and it does not respond to usual treatments, we will use morphine to keep you from feeling breathless. The chances are that you would die in such an episode, but you would be comfortable and you would be at home. Have I understood you correctly? Let me tell you a little more about hospice. . . ."
Teno, JM and Lynn, J, Putting Advance Care Planning into Action, 1996

Elmhurst Hospital Infectious Disease Clinic

People with HIV/AIDS may need to make permanency plans for minor children who survive a parent's death. Asking people to develop these plans is difficult - but essential. Staff members at Elmhurst Hospital Infectious Disease Clinic in Queens, New York, address advance care planning at several points during the course of a patient's illness:

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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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