Medicine from the heart . . . Patrick J. Bonavitacola
Each Thursday, the Daily Voice showcases selected Thursday Morning Memos, reflective essays about clinical experiences written by faculty, alumni, residents and students of the Department of Family Medicine & Community Health. Thursday Morning Memos is UMass Medical School’s homegrown version of narrative medicine, in which the authors process their experiences through writing. To learn more, visit: http://www.umassmed.edu/news/articles/2011/personal_stories.aspx?
Breaking bad news—two grandmothers
All of my grandparents were dead by the end of my senior year of high school, albeit under different circumstances and at different times.
One of my lasting impressions of their last days was the feeling that my hometown hospital was a place of death, not life. My parents expressed hurt that the hospital didn’t tell them what they were doing, and didn’t do what they said they would. After attending a talk where an emergency physician, Dr. Cukor[Jeffrey Cukor, MD, associate professor of emergency medicine], provided some advice on the best way to give bad news, I found myself thinking of my grandparents, and wondering how things might have been done differently, and whether my parents would have felt less hurt and loss.
Dr. Cukor provided a lot of practical advice, such as, when telling a family member that someone has died, make sure to say, “died,” or “is dead.” But also, give them some indication that bad news is coming. Do this in a private place. For example, say, “I’m afraid I have some serious news. Your father was in a very bad accident and his injuries were so severe, that he was unable to survive. I’ve very sorry, but he died.” Then give them time to let it sink in. You can leave and come back to answer questions. If they want to see the body, alert the staff, dim the lights, raise the back of the bed, straighten out the sheets, put one of the loved one’s arms out so the family can hold it; if intubated, cut tube so it remains inside mouth, clean up all blood and fluids: this can be very traumatic to the family. Realize that this is changing the family’s life forever; be sensitive to the enormity and vulnerability of this time.
It was striking to hear the assertion that, yes, there’s a right way to do it, and here it is. I had known how painful it was for my parents, and had always sensed that there was a better way, but couldn’t dissect the inevitable hurt from the loss and perhaps the avoidable hurt due to insensitivity on the part of health care providers.
My dad’s father, Pat, was a bricklayer, and a disabled vet. His mother, Rita, was sick with scleroderma her whole life. She couldn’t read or write because she wasn’t able to finish schooling on account of her illness. When my grandfather Pat died, my dad became my grandmother Rita’s caretaker for 10 years.
She started getting much sicker six months before she died, with more frequent hospitalizations. The night she died, she had been given the last rites, and my dad was keeping vigil. A nurse had told him to go home and get some rest. He went, but insisted that they check on her frequently and call him if there were any changes; they assured him they would. A couple hours later, he got a call from a nurse he had never spoken with. She said, “I just went in to check on her . . . she’s dead.” My dad said, “What? I was told that you were going to check on her every 15 minutes and let me know if there were any changes.” She said she hadn’t gotten that message, had just started her shift, and hadn’t been in to see her for over an hour. She asked if he wanted to come in and see her, he said no. When I asked him recently, he said, “I wanted to be there for her, when she died.”
That story, I knew firsthand, violated the number one tenet of breaking bad news: don’t do it over the phone. Yes, it’s understandable that there was a miscommunication during a shift change as the staff has a lot to manage. It wasn’t intentional. But the communication about her death could have made up for this.
So that resonated with me. I saw how hurt my dad was by that. But then I had the opposite situation with my other grandmother, Annette. This time, the nurse called my parents into the hospital to break the bad news . . . though this led to equally dissatisfying results. My parents tell that story, “They called us on the phone and said that we should come in. So we went there. The nurse showed us into the hospital room. We looked at her. ‘Wait, is she breathing?’ we asked. Then the nurse said sympathetically, ‘No, I’m sorry, she died.’ That was as weird as can be.”
So, OK, I thought, it seems lose-lose; my parents were hurt by the two ways it was handled, one violating the “no phone” tenet, the other bring them in but with no proper warning. So I probed my dad, “Would you rather have not found out over the phone?” I knew it wasn’t the point, he wanted to be there when she died. But still, I asked, would it have been easier to have the news that way, knowing that he had already missed her passing. I asked, “What if they told you to come in and then said they had bad news and that they were sorry but she had just died. And then apologized for not giving you all the news over the phone, but wanted to be able to be there to support and answer any questions and give you the opportunity to say goodbye?” He said, “Yeah, I think that would’ve been better.”
“And what if with grandma Annette, what if they had told you before you entered the room, would that have been better?” “Yes,” he thought. I also suspect that it would have been better if the attending doctor (and not the nurse) had given the bad news, to provide some continuity of care, answer questions, and to show that he was truly invested in my grandmother. Not being there was a symbol of the incomplete way that hospital care can be done; he was busy, and partially absent, and not fully invested, or personally available, in individual care.
The calling of a health care provider is huge. Your job is another person’s life. And mistakes are unfortunately inevitable. But I think maintaining an eye for the enormity of the personal dimensions of hospital care will help to not lose the “healing forest” for the “curing trees.” And it’s good when we can learn from the past, and maybe envision better things.
My grandma Rita was frozen until the spring, so her siblings could make it to the funeral. When the ground thawed we had a burial. I put a note in the casket with her that said I was sorry for not seeing her as much when she got really sick. And said I loved her.
Because my grandma Annette was from California, we didn’t have a service. On a sunny breezy day, we scattered her ashes up in a state forest.
Things don’t always turn out perfect. But love, beauty, and healing can still be found interwoven through the ugliness of death. To be compassionate is a good aim, and Dr. Cukor’s presentation made me realize it’s good to show people how.