Waiting on a miracle, parents fight doctors on end-of-life choices

Experts debate ways to handle disagreements over end-of-life care

Topics: Physician Issues

August 15, 2012

A new study in the Journal of Medical Ethics concluded that health care providers should have legal options when parents refuse to cease aggressive, end-of-life care for their child based on religious beliefs.

A team of intensive care physicians and a hospital chaplain reviewed 203 cases at Great Ormond Street Hospital's pediatric ICU in which parents had to make end-of-life decisions for their children.

In 17 of the 203 cases, parents insisted on prolonging care despite overwhelming medical evidence and advice suggesting that such aggressive care was futile and could be painful. In six of the 17 cases, parents agreed to end life-saving care after further discussions with providers. Of the 11 remaining cases:

  • Five were resolved after parents met with religious leaders outside the hospital;
  • One was not resolved until legal action was taken to withdraw life support;
  • Five were never resolved and life support continued (four of these children died, and one child survived with a severe neurological disability).

The study authors note that the 11 sets of parents who refused to cease medical care cited religious beliefs as a reason for their refusal.

Based on their findings, study authors wrote that care providers should have "rapid default access to courts in such situations when the best interests of the child are compromised in expectation of the miraculous."

Experts debate best way to handle end-of-life care disagreements

The journal also published four commentaries on the issue, each written by Oxford University faculty members.  

One commentary recommended that, "instead of seeking to override the wishes of parents who are waiting for a miracle" providers should "seek to engage [them] on their own terms and encourage them to think about whether or not continuing life-sustaining therapies will make it more likely that a miracle cure will occur."

In another commentary, ethicist Julian Savulescu argues that distributive justice—a societal obligation to appropriately allocate limited resources—offers a "better ethical ground for withholding or withdrawing life-prolonging treatment" than the argument that it is in the patient's best interest to die. "It has been a convenient fiction to tell patients and parents that treatment is not in their interests because we can't face up to the elephant of distributive justice," he writes (Neporent, ABC News, 8/14; Dallas, HealthDay, 8/14; Bankhead, MedPage Today, 8/13).

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