I spent Election Day in South Texas, where the lively local campaign headquarters proclaimed itself “AlamObama.” I had some time that afternoon to walk around downtown San Antonio. This was the end of El Dia de los Muertos, the Day of the Dead festival, and houses and shops were still decorated with colorful papel pecado, paper cut-outs with the festival motifs of skulls and dancing skeletons. (On one porch, I spotted a specially commissioned string of papel pecado that spelled out “O-B-A-M-A.”) I came across five ofrendas: altars with “offerings” to dead loved ones. A shop in Southtown gave over an entire floor to the local ofrenda, decorated by the shop owner with the traditional marigolds, sugar skulls and more papel pecado as a backdrop for neighbors to display photos and mementos (including the curlers and can of hairspray that completed a triptych, flanking a photo of a well-coiffed woman). The public square in front of the cathedral had a huge ofrenda commemorating local residents lost to violence and HIV/AIDS. My favorite ofrenda was at the Southwest School of Arts and Crafts. The altars may include a loved one’s favorite foods – on one altar, I spotted bottles of beer and plastic-wrapped plates of rice and beans – in addition to the symbolic sugar skulls, pan de muerto (bread of the dead), and bowls of water. The ofrenda at the arts and crafts school included a large framed photograph of “Callie,” a beloved member of the school community, and a bowl of kibble. Callie was a cat.
I was in San Antonio because of a boy named Joshua. Several years ago, he completed a successful stem cell transplant to treat a rare form of acute myelogenous leukemia (AML), and was about to be released from a local hospital. He received an overdose of medication, and he died. He was 18 months old. At the request of Joshua’s parents, who live in a different part of the country, the hospital had established an annual patient safety symposium for their staff. For the first few years, the symposium had focused on the technical aspects of patient safety, on preventing the systems errors that had resulted in Joshua’s death. This year, the hospital’s staff finally felt, in their words, “prepared” to use the symposium to address the emotional consequences of harmful mistakes, and how their emotions – including the ever-present fear of being sued – affected the care of injured patients and their families. So they invited me to be this year’s speaker, to lead a series of lectures and discussions on what happens “after harm,” in particular, what happens after a person is harmed by those who were trying to help.
There was a large poster of Joshua in the conference room: a beautiful, smiling, healthy-looking toddler. At the beginning of each session, a hospital official would describe the day she and her colleagues met with Joshua’s parents in their motel room – where they had lived during their son’s treatment – to begin to talk about what they needed, what they wanted. And what they wanted – given that they could not have their baby back – was what every patient and family affected by medical harm, when asked, says they want: some assurance that this was not going to happen to some other patient, some other family. This patient safety symposium and others like it are one way hospitals respond to these pleas.
I’ve begun to think about these talks I give after something terrible has happened as ofrendas, as our annual offerings to the dead, to patients like Joshua. While they are presented as opportunities for continuing education and clinical innovation, they serve a ritual function, as opportunities for mourning and commemoration. However, the role of the chief mourner in these rituals can be unclear. Some hospitals invite families to attend and act as chief mourner, but may have uneasy or mixed feelings about this practice. (Will someone get angry or upset? If they’re unhappy, could they still sue us? What more do they want from us, anyway?) Others tell families “not yet,” a compromise that may be distressing to families, who may feel closed out of the observance of their greatest trauma. Others have little or no contact with families, using “the incident” as a closed-door occasion for internal soul-searching.
As an outsider, I am permitted to come inside hospitals for a day or two to listen to health care professionals talk about the worst day of their collective professional lives: the day of “the incident.” And after I give my talk, audience members tell me stories about other “incidents”: the mistakes, the deaths, that physicians and nurses tried to cope with on their own, well before the current attention to medical error as a major health care problem, well before disclosure became the norm. In these public and private conversations, I try to clarify the role of the chief mourner. I try to remind clinicians and administrators that medical harm happens to the patient and the family first. The physical injury, the economic impact, the tragic loss, are devastating to them, first. That these incidents are also devastating to the responsible professionals and to an institution should be recognized: professionals and institutions must recover from medical harm, too. However, the simple – and complex – act of mourning a loved one, over time, should be respected. Families may want to maintain a connection with the hospital where their mother, their husband, their brother, their child died: they may need to do so if this is still their local hospital. They may want to see, with their own eyes, what the ofrenda looks like: how is their personal tragedy being translated into safer, better care?
And they may want to tell their own story, about their own loved one, in their own words. In a recent address to the Colorado Patient Safety Coalition, AMA president Nancy Nielsen pointed out that hospitals promote this practice among other groups of “survivors”: in cancer care, for example. If hospitals encourage breast cancer survivors to tell their stories, and to lend their stories to efforts to improve care, they must learn to do the same for survivors of medical harm. Acknowledging the raw emotional impact of medical harm on professionals and institutions – the sorrow, the shame, the fear – must not inflict further harm on those who still mourn their dead.
Nancy Berlinger is Deputy Director and Research Scholar at The Hastings Center.