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.

Specifically, 69 percent of clinicians reported that the care of a patient changes once a DNR order is written. One major change is a greater focus on comfort, but there also may be limitations or withdrawal of other appropriate interventions. One clinician surveyed overheard this worrisome comment by a scheduler in an MRI suite: “There is no hurry for that MRI, the patient is DNR.” But in fact, the clinician wrote, “there was a great hurry as we were trying to look for a local intervention to alleviate extreme pain.”

Some clinicians (4.3 percent) felt that attentiveness from the clinical team decreases once a DNR order is in effect. Though the number is small, we need to guard against this trend becoming more prevalent. “These patients are frequently discussed at the end of rounds, after other ‘acute issues’ have been dealt with,” wrote one clinician. “In certain cases, there may be reluctance of the team to go into the room.”

On the other hand, 5.9 percent of physicians and nurses felt that patients receive more attention from the medical team once a DNR order is in place. Of the remainder, 62 percent of clinicians felt the attention level is unchanged, and 28 percent were unsure.

What’s clear from this study is that we need better ways to plan for end-of-life decision-making with patients and caregivers. Clinicians should not wait until a DNR order is initiated to integrate the emotional aspects of medicine.

Initiating end-of-life discussions

Having a child with a life-threatening illness can be frightening and stressful for parents. When their child is in the hospital, parents want honest, direct and compassionate communication with the child’s health care providers. In fact, information given by the clinical team may influence end-of-life decision-making.

These conversations can be very difficult for parents given the overwhelming nature of the circumstances. So it’s our responsibility as clinicians to initiate these discussions at the appropriate time and make them bearable.

Interestingly, a survey my colleagues and I published last year revealed that physicians and nurses believe parental factors to be the most common barriers to pediatric advance care discussions. Factors cited included unrealistic parent expectations, limited understanding of prognosis and lack of readiness to have the discussion.

It’s true that anxiety, fear of death or fear of losing hope may make patients and families unprepared for advance care discussions. But then again, they may simply be waiting for the clinical team to initiate the discussion—or may not even be aware of the need for such a discussion—leading clinicians to incorrectly presume that patients and families are not ready.

But are clinicians ready? In our survey, 88 percent reported little to no structured training in resuscitation status discussions during medical/nursing school, and 61 percent had little structured training during their postgraduate education. Clinicians may have varied experience in participating in advance care discussions and often lack an appropriate tool to document patient goals of care.

Improving advance care planning

Confusion arises if treatment preferences are not known but rather inferred from DNR orders, which alone cannot adequately address the overall goals of patient care beyond cardiopulmonary resuscitation. If DNR orders are not discussed in the context of overall goals of care, clinicians may wrongly assume that a patient who agrees to a DNR order would also decline other medical therapies.

Informed, appropriate medical decisions for patients with life-threatening conditions will require interventions to increase clinician knowledge and skills, as well as the development of orders that properly address overall goals of care. Massachusetts and other states are implementing Medical Orders for Life-Sustaining Treatment forms. After discussing goals of care with a primary care provider, patients and families can indicate their wishes to use or withhold a range of interventions, including intubation, ventilation and artificial nutrition.

While there have been advances in palliative care and communication skills training, we can do better. We must do better…for the sake of our most vulnerable patients and their families.