Compassion [kuhm–pash-uhn] noun
A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.

Compassion Corner is a weekly series from Patient Worthy that will focus on the subject of compassion in the healthcare and rare disease space. In this series, we explore the role of compassion in this field and what it means for caregivers, patients, and others.

Diana Robinson describes what it was like to return to the hospital where her baby Reed died just one week prior. Diana’s compelling story has recently been published in Kevin MD.

Diana knew the trip would be difficult, but she was not prepared for the cool and disinterested staff that had treated Diana and her husband Jeremy so warmly in what had been their home while Reed was alive.

Admittedly the trip took all the courage Diana could manage since Reed had died in her arms just a few days ago. This time, as Diana says, Reed was not waiting for her.

Diana had called the hospital earlier to say that they would be arriving soon to collect the milk she had pumped over the past month and the molds made of Reed’s hands and feet. They fully expected the items to be ready. The couple expected to be greeted by the nurses just as they had been each time they arrived before.

This Time It Was Different

The couple did not approach the reception desk immediately and remained at the entryway. Several nurses they knew and who had attended for Reed passed by but diverted their eyes.

Even more surprising, several resident physicians who knew the couple, had been present at Reed’s diagnosis of necrotizing enterocolitis, and were in attendance during his operation were standing only five feet away. They were chatting with the person at the front desk but did not acknowledge the couple’s presence

Finally, they approached the nurse in charge. She failed to offer even the slightest condolences, said flatly that she had no idea where the molds were nor did she know the whereabouts of Reed’s beloved little octopus toy or swaddling blanket.

Their disappointment went further when one of the neonatologists who befriended Jeremy saw them and actually turned away.

Diana felt they were strangers in a place they had once belonged. That when Reed’s body had been carried to the morgue they had lost their right to be there. This was the only place where people knew Reed. Now his parents had been greeted with coldness and avoided instead of being treated with empathy and compassion.

Dejected, they turned and were about to leave when one of the nurses saw them and rushed over in tears saying how sorry she was and that she really loved Reed.

Just as they were getting on the elevator another nurse came rushing over, hugged Diana and said how much she loved attending to Reed. Diana said that she doubts whether nurses Amy and Lauren could imagine how much their comforting hugs meant to Jeremy and to her.

When the hospital social worker called later in the week Diana told her of their experience. The social worker apologized on behalf of the staff and promised bereavement training would be mandatory for the nurses.

The social worker’s promise was comforting to Diana, but she could not really understand why there is a need to train people to be compassionate.

She offers a scenario of drivers straining to look at a fatal crash but incapable of looking the bereaved family in the eye and offering condolences.

Diana feels that we are inept in terms of facing grief, pain, and discomfort.

COVID-19 mandated that only the immediate family attend Reed’s funeral. Diana is concerned that since her pregnancy and Reed’s birth and death occurred in isolation, people may not be even conscious of his existence.

Diana is very grateful that recently some people have stepped forward with condolences and kind gestures. On the other hand, she explains that others were silent. She is trying to be fair and realize that for many reasons, perhaps their personal discomfort, they were unable to comfort her. Or perhaps they were concerned about saying something that would upset the couple. However, Diana said that their silence hurt much more than any wrong words offered amid good intentions.

But since the death of her baby, Diana has made a pledge to improve. She realizes that there may have been times that she fell short of compassion. She promises to begin reaching out, making donations, sending cards, and sitting with friends. She wants to be on the giving side and not among the silent population.