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Study: Advance Directives Are About More Than Refusing Care

A new study finds that nearly one-third of people who fill out advance health care directives—documents that lay out a patient's wishes for end of life care—request medical interventions. The research from DePaul University explores the choices people make in advance directives, where they store the documents and with whom they discuss their plans.

The study, "Assessing Advance Care Planning: Examining Autonomous Selections in an Advance Directive," will be published in the fall issue of The Journal of Clinical Ethics. Lead author Craig M. Klugman, chair of DePaul's Department of Health Sciences, and co-author Nicole M. Tolwin, a DePaul alumna and graduate student in nursing at the University of Illinois at Chicago, found a correlation between a person's age and their request for interventions. Younger people requested interventions such as respiratory support or antibiotics more frequently than people over the age of 50. Researchers also discovered that many people may not be discussing their wishes with loved ones after an advance directive is completed.

"Contrary to common beliefs in the health care community, advance directives are used for more than refusing care," says Klugman, a bioethicist and medical anthropologist at DePaul. "However, many participants indicated that they had not yet had a meaningful conversation with their future surrogate decision-maker, and this needs to be addressed."

Researchers analyzed survey results from 491 individuals, ranging in age from 19 to 94, who wrote an advance directive through TexasLivingWill.org.

"Knowing what patients value can provide guidance for unforeseen decisions," said Klugman.

Other findings about interventions are:

  • People over the age of 50 were more likely to refuse aggressive care in the document, while those younger than 50 were more likely to request interventions.
  • Some 95% of respondents want to be free from pain during end of life care.
  • The vast majority, 93% of respondents, described valuing quality of life over quantity. No difference was found by age group for this factor.
  • Overall, two-thirds to three-quarters of participants chose to refuse interventions, but this outcome is still lower than findings in previous research.

Researchers also asked where individuals stored their advance directives, and with whom they had discussed them. Findings include:

  • While many respondents turned their advance directive over to an attorney or physician, far fewer actually had conversations about the document with loved ones.
  • Of those who had conversations about advance care planning, most discussed it with a spouse or partner, followed by a child or a sibling.

"It appears that many people hand a document to a person who may be involved in their future care decisions, but they don't discuss what the document means, or what their wishes or values are," says Klugman. "Having the document is important, but having the conversation is essential."

Source: DePaul University