Wednesday, July 29, 2015

Decision Making for Unknown & Vulnerable Patients: A Survey

Go straight to the survey, or read on.

The Community Ethics Committee (CEC) has become a valued resource for the ethics leadership of Massachusetts General Hospital, Boston Children’s and other institutions affiliated with Harvard Medical School.

Now you can provide a valuable voice to the CEC in its current study of an especially vulnerable patient population. These patients are known by various names -- unrepresented, unbefriended, adult orphans, etc. -- but the CEC refers to them as Unknown and Unrepresented Patients.

Due to dementia, brain trauma, substance abuse or other reasons, these patients at least temporarily cannot comprehend their medical situation or influence decisions. Further compounding the mystery, they have no one to speak for them, and there is no available documentation of their wishes.

Decisions that sometimes involve life-sustaining treatment can be left to overburdened courts, inadequately resourced public guardianship, or decision-making practices and biases unique to each physician, hospital or care facility. The result ranges from neglect to over-treatment, potentially harming both the patient and the moral values and integrity of doctors and nurses caring for them.

This patient population is growing commensurately with a doubling of the elder population  nationally by 2030. The conservative estimate is that 25,000 of these unknown humans die in American critical care wards annually. Most of these involve a decision to withhold or withdraw life-sustaining treatment.

How, and by whom, ought medical decisions be made for patients who cannot make their own and have no one who knows them well enough or cares enough to make it for them?

You can inform this important project by answering 10 questions in this survey. The time commitment is small, but the contribution is great.

The CEC is grateful for the work of Talia Burstein, a student at Emory College and a graduate of Brookline High School, for her thoughtful and diligent work in creating this survey.


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