Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

How can patients who have chronic diseases better prepare for critical illness and the end of life? Will a decision aid, using individualized estimates of outcomes, help shared decision making about advance care planning?

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

a decision aid about end of life decisions versus current practices

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

patients with chronic disease

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

severe chronic disease

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

ICU care that meets the needs and expectations of patients and their family members

Describe any health-related risks, side effects, or harms that you are concerned about.

receiving aggressive care that has almost no chance of improving survival and almost certainly results in a poor quality of life.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

unsure

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

• Cardiovascular disease, including stroke and hypertension
• Functional limitations and disability
• Pulmonary disease/asthma

AHRQ Priority Populations

• Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

None

Importance

Describe why this topic is important.

At present the care given to patients who have severe chronic disease and become critically ill is seldom based on informed decision making by patients and their family members about potential outcomes of aggressive treatments.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

I am a critical care doctor who has been working with patients on decision making at the end of life and continuously witness 'uninformed' decision making about the aggressiveness of care desired. By 'uninformed' I mean that patients are not given adequate knowledge about the alternative treatments available to them, including palliative treatments. There is also significant variability in the quality of the information provided by clinicians in the hospital.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

clinicians are often uncertain about the implications of aggressive treatments in patients with severe chronic diseases. A decision aid that allows the estimation of outcomes with alternate treatments, including palliative treatments, would assist in this shared decision making between clinicians and patients with severe chronic disease. Although our health care system supports advance planning for end of life care, we need individualized information to support this decision making.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

Intensive care provided to patients with severe chronic disease will be congruent with the patients' preferences - specifically: preferences about the likely outcomes of the treatments.

Describe the timeframe in which an answer to your question is needed.

As soon as possible. Ethical tensions are pervasive in intensive care units across the country about providing aggressive care to patients who have almost zero chance of survival and/or of "meaningful" recovery.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

The inequity in this case is the differential information that is provided to patients with severe chronic disease about the likely outcomes of treatment. As a result, many patients are receiving care that is not congruent with their preferences.

Nominator Information

Other Information About You: (optional)

Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

Intensive care provided to patients with severe chronic disease will be congruent with the patients' preferences - specifically: preferences about the likely outcomes of the treatments.

Are you making a suggestion as an individual or on behalf of an organization?

Individual

Please tell us how you heard about the Effective Health Care Program