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Teenagers facing early deaths are increasingly being consulted about their care

Teenagers facing early deaths are increasingly being consulted about their care

Jan Hoffman, writing for the New York Times, reports on a growing movement to include teenagers in their own end-of-life planning and care.

Hoffman notes that this is an extension of a movement that focused first on adults.

From the article:

A national push to have end-of-life discussions before a patient is too sick to participate has focused largely on older adults. When patients are under 18 and do not have legal decision-making authority, doctors have traditionally asked anguished parents to make advanced-care choices on their behalf.

Teenagers are being asked questions ranging from how they want to receive visitors to when they want to stop treatment, and how and where they’d prefer to die.

No standards currently exist, and care providers have many hurdles to overcome in creating a space to have these conversations in. A study was conducted of adolescents with HIV/AIDs to determine if these conversations would cause harm to patients, and did not find any adverse effect, and providers use intuition and some guidebooks to direct their conversations.

One of the teens in the story, who survived and seems to be recovering, speaks in the following short video.

The story contains photos and PDFs of the patient directives, shared by their families.

Do you think hospital chaplains and clergy have a role in these conversations? Have you talked about quality of life and family issues with chronically ill teens?

 

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