Having the Right End of Life Discussions

Recently, reading an article in Journal of the American Medical Association and also a blog from Boston Children’s Hospital, has caused me to think about the conversations we are not having.

Amy Sanderson, MD, an intensivist at Boston Children’s Hospital, has done a survey with physicians and nurses practicing in oncology, intensive care, and cardiac intensive care. Two thirds of those surveyed agreed that a Do Not Resuscitate (DNR) order should guide decisions made during cardiopulmonary arrest. However, 69 percent reported that after a DNR order is written, the care changes.

What Changes?

Clinicians in Dr. Sanderson’s survey believed that there is a greater focus on comfort care but that there may also be limits set for or withdrawal of other interventions.  Confusion develops when goals are inferred from a DNR order and preferences are not understood.  Clearly, what is often lacking is a discussion about the goals of care or end of life decisions.

What Gets in the Way?

88 percent of clinicians in this survey reported that they had little or no training during medical or nursing school that would prepare them for end of life discussions.

The parents of pediatric patients also present barriers in the form of unrealistic expectations, limited understanding of prognosis, and lack of readiness to have a discussion.

While it may be true that parents are not ready, isn’t it possible that they are waiting for their health care providers to open the door for the conversation?

The Bigger Picture

While this survey focused on pediatric patients and their families, I wonder if we can extrapolate an application to all patients and their families.

How often is an end of life discussion avoided?  How often is there confusion about goals of care?  Do families in general have unrealistic expectations for their loved ones or limited understanding of prognosis?

Most importantly, if there is a lack of education about end of life discussion techniques for the pediatric clinicians, why would we assume there has been education provided for the adult clinician?

Are There Answers?

Determining overall goals of care for our patients at any age is essential when recommending or responding to a do not resuscitate order.  Every member of the health care team has a need to know what care decisions the patient and/or his family desire in order that they may support those decisions with appropriate interventions or therapies.

Until education for clinicians includes adequate instruction concerning patient and family end of life discussions, it becomes incumbent upon each facility or health care system to provide this education as part of their orientation and training.

We Must Do Better

To quote Dr. Sanderson, “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.”

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