Recently, I engaged with some colleagues in a heartfelt conversation about the sense of purpose I feel when caring for patients during the transition times in their life. Oftentimes these transitions occur following a new diagnosis or change in patient status. We spoke of the value of continuity in the doctor-patient relationship and the importance of being fully present in the moment. This requires that physicians go beyond the external trappings of the encounter and commit the entirety of their self to the patient relationship at that moment. It is this presence which allows us to better identify with our patients through the lens of empathy and enables us to engage in difficult conversations. Ideally, this leads the physician and patient to improved shared decision making and the patient feeling supported during times of difficulty.
As the topic of the day regarded women’s health issues, our group was discussing prenatal care. Obstetrics is traditionally the “fun” part of family medicine where we manage generally healthy women through what we hope to be an equally healthy pregnancy and then usher in squirming, wriggling bundles of life. But what happens when birth and death collide? Birth and death — in the same moment? That is what occurs with a stillbirth. How do we as physicians respond with empathy to support the grieving family?
October 15 is a national remembrance day for miscarriage, stillbirth and infant loss. Stillbirth is defined as the death of a baby at or after the 20th week of pregnancy. In the medical community we refer to this as Intrauterine fetal death. It is not as rare as one might think, occurring at approximately 6 per 1,000 live births or roughly 26,000 cases per year. It is not surprising then that a family physician is likely to encounter this experience during their career. It is during such moments that the physician must focus on the emotional needs of the mother and her companions, while managing maternal medical requirements following an adverse birth outcome. This is a distressing time and women highly value both recognition and acceptance of their emotions. The goal of care is to understand the woman’s wishes without trying to unduly influence them.
I was lucky enough to train at an institution which, even back in 1989, had an interdisciplinary protocol in place to support families grieving from this type of pregnancy loss. This was a new concept at the time as the earliest perinatal grief support teams were in the early- to mid-1980s. At our community hospital, women with late-term pregnancy loss were managed at the far end of the labor and delivery suite, away from a bustling nursing station and as distant as possible from other deliveries with crying babies.
The delivery door was subtly, yet clearly, marked with a rose so all staff members and all disciplines knew to respect the privacy of the family and not intrude. Physician, nurses and chaplains worked in concert to identify the patient’s wishes and allow her to direct her course of treatment as much as possible. We honored these wishes as long as the mother’s physical wellbeing was not in jeopardy. We practiced “patient-centered care” long before the phrase was coined. We did not presume to know what she wanted, yet prepared for most possibilities.
Most mothers chose to hold their infants, but others did not, and some did not want to even see their baby in the moment. Regardless, each infant was bathed, foot-printed, clothed in an infant gown, swaddled in a hand-crocheted blanket and photographed. A locket of hair was then added to the infant’s momento box which could then be taken home or, if the family desired, could be stored onsite for potential retrieval at a later date.
I was grateful for this training when five years ago I was the attending who was unable to auscultate fetal heart tones in the exam room and had to send my patient for an urgent ultrasound. I then had to follow up on the devastating news that the son this family was eagerly awaiting and was due in three weeks was no longer alive. Though I was not scheduled to be in the hospital that day, I stayed with my patient throughout the induction, delivered her son, and placed his precious lifeless body in her arms. I was her attending physician. To “attend” is to be “present.”
Empathy is not the same as sympathy. Empathy moves us a step beyond sympathy to shared perspective and emotion. Compassion moves us further still. It is the emotionally difficult which challenges and stretches us.
Support services for grieving families
- https://www.mend.org/infant-loss-organizations/
- http://www.sad.scot.nhs.uk/bereavement/pregnancy-loss-stillbirth-and-neo...
- https://www.cdc.gov/ncbddd/stillbirth/resources.html
Donna Tuccero is associate program director of the Duke Family Medicine Residency Program. Email donna.tuccero@dm.duke.edu with questions.
Editor’s note: A member of the Duke Family Medicine Residency Program leadership team guest blogs every month. Blogs represent the opinion of the author, not the Duke Family Medicine Residency Program, the Department of Community and Family Medicine or Duke University.