Why is it so difficult for us to talk with our patients and their families about end-of-life? Many of us worry that patients and families will assume that we are giving up. Even more of us may worry that these discussions will create more stress, distress, and anguish – and we don’t want to inflict this on a family.
But are we doing families a disservice when we don’t talk about these issues? This week, Pediatrics is early releasing an important study by Jessica Thompkins and colleagues from Children’s National, University of Minnesota, St Jude’s Children’s Hospital, Akron Children’s Hospital, and George Washington University, entitled, “Pediatric Advance Care Planning and Families’ Positive Caregiving Appraisals: an RCT.” (10.1542/peds.2020-029330)
This team conducted a randomized controlled trial in which 126 adolescents and young adults (aged 14-21 years) with a cancer diagnosis and their families were randomized to either usual treatment or the FACE®-TC intervention. This intervention consisted of 3 weekly hour-long sessions. In the first session, patients and families completed the Lyon Advanced Care Planning Survey. In the second session, patients and families participated in a Respecting Choices® Next Steps pediatric advanced care planning conversation with a certified facilitator, which resulted in documentation of treatment preferences. In the last session, patients and families completed the Five Wishes advance directive. The documents that came out of these sessions were shared with the patient’s oncologist and placed in the medical record.
This paper focused on the impact of this intervention on the family members. Compared with the control family members, those who participated in the intervention found it to be useful and worthwhile. While family members who received the intervention did not describe increased strain or distress compared with family members who did not receive the intervention, it should be noted that families of color in general experienced more distress (whether they received the intervention or not).
This is a paper that everyone should read. Even if you do not care for patients with cancer, all of us have or will care for a patient with medical complexity for whom advanced care planning is appropriate. In an invited commentary (10.1542/peds.2020-048660), Dr. Khaliah Johnson at Emory University notes that, as medical advances allow us to care for patients with higher degrees of medical complexity, we also have to consider patients’ and families’ feelings, values, and perspectives before charging forward. She also notes that the National Cancer Institute has recognized FACE®-TC as an evidence-based intervention. This provides us with a template to begin having these difficult but important conversations with families.
