Stories about: end-of-life care

DNR orders and end-of-life decisions for children: The elephant in the room

End of life decisions: The elephant in the roomAmy Sanderson, MD, is a critical care physician at Boston Children’s Hospital whose research interests include developing and studying interventions to improve the quality of communication among clinicians, parents and children with life-threatening illnesses.

Do-Not-Resuscitate (DNR) orders are supposed to tell clinicians what not to do should a patient stop breathing or his heart stop beating (cardiopulmonary arrest). But our research in children with life-threatening illness reveals that DNR orders often are used in variable, unintended ways that, while well-intentioned, are problematic.

We surveyed physicians and nurses practicing in oncology, the intensive care unit (ICU) and the cardiac ICU—settings where end-of–life decisions typically take place. Of our 266 respondents, 67 percent agreed that a DNR order should guide medical decisions only during a cardiopulmonary arrest. Yet, in reality, their responses indicate that DNR orders influence care much more broadly.

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Pediatric palliative care: What are the child’s best interests?

(Quinn Dombrowski/Flickr)
(Quinn Dombrowski/Flickr)

When someone is terminally ill, what is the right treatment course? Should treatment be stopped altogether? What is in the patient’s best interest? What role should medical professionals, including clinical ethicists, play in the decision-making process?

Such decisions can tear families apart, and the choices can confound politicians, policy makers and the public. In 2012, Massachusetts voters rejected a ballot question that would have allowed physician-assisted suicide for terminally ill patients. The initiative lost by 1 percent of the vote. Federal legislation would have provided Medicare reimbursement to physicians for counseling patients about living wills and end-of-life care, but the provision was dropped amid claims that it would create “death panels” that would judge whether a patient is “worthy” of care.

Publicly, most palliative care and end-of-life debates focus on the elderly, but the issues are especially complex and wrenching for children and teens facing severe, painful or life-threatening conditions. Children are at the beginning, not the end, of life, and the adults involved in medical decision-making may have conflicting interests and wishes.

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