Connecting care: The physician as a healer

It was only my second time seeing her. She was beautiful, peaceful, resting in her mom’s arms; inactive. Her inactivity was the result of the trauma from a motor vehicle accident that occurred a few weeks before, when she was only two weeks old. She was not expected to survive after ventilator support was withdrawn, but she did and had been discharged home.

Then, there she was with her young parents; she, their first-born baby. Their concern that morning: she was having trouble breathing. As I spoke with her parents, I observed her in her mother’s arms. She had agonal respirations. She was actively dying.

I sat facing her parents; I empathized and with utmost compassion, informed them that their baby was dying. They had been aware that she was not expected to survive for a long time but did not realize that the time had come. We talked about how beautiful she was; not a scratch on her beautiful skin. Dad expressed his anger at the driver of the car in which the family was travelling; the driver who had pulled out into oncoming traffic. At that moment, everything else was put on hold. I was in an outpatient clinic. There was no social worker or chaplain nearby.

I asked the parents if they wanted me to pray with them. They said they were unsure. I reassured them that whatever they chose to do was the right decision. I inquired if I should call hospice, to which they had already been introduced prior to discharge from the hospital. They agreed. Within forty-five minutes to an hour, a hospice team of two arrived. We all sat together in the exam room, sometimes in silence, sometimes in conversation. The parents directed the pace. They decided that they wanted prayer and we did pray, led by the hospice chaplain.

After the hospice team left, I again sat with the parents and their beautiful, peaceful baby. I hugged them, cried with them, grieving the impending death of their baby girl, whom I held for a while. (I am the mother of two young adult daughters, who were much younger at the time).

When the parents were ready, I let them go. They had a long drive home, about one and one half hours. I explained to them that their baby may not make it home alive; they were at peace with that.

Later that evening as I arrived at the venue for the work Christmas party, where ornaments were being exchanged, I received a page. It was the sheriff’s office notifying me that the beautiful daughter of the young couple had died in the car on the way home. The sheriff needed to confirm that she had died from natural causes.

Several months later, my mother who had lived a full life and had passed her 89th birthday, was diagnosed with a brain tumor. As she was dying, hospice was invited to assist in my home as my mother had resided with me for almost fourteen years, offering support as I raised my own two children. I had memories of the beautiful infant who did not live to see her first birthday. Her and her parents’ experience helped to give me a sense of peace with the dying of my mother. Through them I came to realize that dying was a process, not an event.

Over the past several years, I have remembered the beautiful baby girl and her parents and wondered if they have had other children and how they are doing. The experience is etched in my memory. On that day when that family came to see me, there was no medical intervention to perform. Only listening and talking, and caring and empathizing and helping to fulfill a spiritual need. All that was required was my compassion and time, and the understanding of those who had to wait longer than usual.

As busy physicians, we do not usually have time but I do believe that we have to make time for humanistic endeavors, for healing. To comfort parents while their baby is dying is the duty of physicians along with other healthcare team members.

For this baby and her family, this was a once-in-a-lifetime event. This experience required communication in various forms and between different team members. There were verbal and nonverbal exchanges; attentive listening and observation were called into play; information had to be conveyed to the hospice team; the sheriff had to communicate with the parents and with me. The nursing and clerical staff had to explain confidentially to other patients why they had to wait longer than usual to be seen. The parents had to communicate with each other and they did so in a loving way with few words. Comforting words and touch were also communicated to the baby.

To heal means to become sound or healthy again or to alleviate a person’s distress or anguish. A physician has two roles, that of healer and of a professional. These roles are served simultaneously.

Attributes of a healer include caring and compassion, openness, respect for the healing function, respect for patient dignity and autonomy and presence. According to Hippocrates, “healing is a matter of time but it is sometimes also a matter of opportunity.”

As the infant daughter of the young couple was actively dying that day, my roles as healer and professional were intertwined. Medically, there was nothing to offer. There was no physical pain. Life support had been tried and withdrawn. The baby had been diagnosed as brain dead and the parents had previously made their decision that when this time for physical death came, they would allow their daughter to die peacefully.

They could have changed their minds that day but they did not. There was no needed intervention. However, I was needed as a healer. There was an opportunity for healing by alleviating distress and anguish. There was no second thought. It occurred quite naturally; being present with the family and offering compassionate care in an environment of openness. The parents maintained autonomy over who, what, where and when.

All of the healing factors were facilitated by positive communication between family, physician, hospice team and nursing staff. This beautiful baby and her family’s care were connected via communication.

Donna M. Parker, MD is a pediatrician in Gainesville, Florida.