I remember the first time I pronounced a patient dead—that’s something they make sure you learn well in medical training, as nobody wants to get it wrong. They taught us how to apply pressure to the fingernail to ensure the patient does not respond to pain while holding the patient’s hand, watching for breaths, and feeling for a pulse. They taught us to take our time to ensure we got it right.
What we did not experience, or at least I did not, was the ongoing dying process. I never stayed in the room with a person who was dying for hours on end. We were busy, of course; the pager was calling us to another room, to the ED for an admission, so that made sense to me at the time. And it seemed reasonable that we wanted to give the family space.
In 2019 my father was nearing the end of his time on hospice. We were blessed with a long goodbye. My dad was an active man who did not want to spend his final days in a hospital. He wanted to be doing what he loved most: spending time with us, reading, riding his bike, watching the cottonwood tree leaves blow in the wind, watching the birds, and remodeling a home. We had to push very hard to get that referral to palliative care, even pull strings, which seemed strange to me. It felt as if the medical team wanted to extend his life with treatments that they admitted would provide little benefit. Few were interested in discussing the value of a good death. After pushing hard, we were able to meet some amazing palliative care doctors and hospice staff, and then things changed. We focused on quality of life and comfort. This is when he got back on his bike (briefly) and missed a hospice visit once because he was out with my uncle getting a Whopper at Burger King (he loved those). It was unknown territory for us, however, as we had been told he had days to weeks. Four months later, he was still with us. It was wonderful to have the time, the conversations, and everything else. But when he became too weak to walk, and when he stopped talking, I was not ready for the next phase. I had never really seen the process of death up close.
I had heard so many great stories of people waking up prior to death and sharing meaningful words with loved ones before dying. A dear friend told me of how her father had been sleeping for days. Suddenly, he woke up, drank a bunch of grape juice, and asked how much it would cost to have another. We had so many laughs over her frugal father, who was excited the juice was free. What I did not expect was how my dad started to withdraw. His eyes were closed all the time, and he stopped responding to us verbally. His breathing became louder. It was disturbing to hear. The hospice staff were great at educating us on what was happening, how his body was shutting down. And still, I kept thinking, how is it that I don’t know more about this? I had spent four years in medical school, three in residency, and two in fellowship. My mom had been a nurse for over 30 years. I figured we likely had more knowledge than the average family, and still I am a bit embarrassed to say how it all felt a bit surprising. We gave him the medications as suggested by hospice to keep him comfortable. When I woke up that last night, I realized that I was no longer hearing his loud breathing. I went to check, and he’d slipped away. I cleaned up the secretions around his mouth, said my final goodbye, and woke my mom. This is not what we had anticipated.
Two days ago, I witnessed a similar process with my dear cousin and best friend from childhood. Leigh Ann had just turned 50 a couple of weeks ago, and now she was nearing the end of her long battle with breast cancer. She stopped eating and then slowly stopped talking. Her breathing became more labored, and she felt warm to the touch. The hospice nurse told us repeatedly that the loud sounds of her breathing were more upsetting to us than to my cousin. She pointed out how her brow was not furrowed but, in fact, appeared relaxed, so she did not seem to be in pain. She reminded us that Leigh Ann could hear us, so we shared stories of the past, my daughter sang some of her favorite songs, and we cried as we heard her brother say his last goodbye. I watched my dear aunt curl up in bed next to Leigh Ann to be there with her, as we knew she did not want to die alone. And we waited. Each hour the nursing staff brought the medication to keep her comfortable. All the while, I was again shocked at how new this experience was for all of us. My aunt is a nurse, my uncle is an OB/GYN physician, our close friend Shannon is an OT, and I’m a psychiatrist. I joked with the nursing staff that we are the worst type of family to have on a unit: a room full of people with some medical training but not anything to do with the current situation, and isn’t it fun to get a bunch of questions from docs and nurses who think they know? They smiled and still patiently came to reassure us if my cousin seemed too warm or if her breathing changed and reminded us that her body was shutting down. They gently pointed out her mottled hands and encouraged us to ask for more medication if her respiratory rate was escalating. They were so patient and kind. And I kept thinking to myself—how is it that we do not learn about this until we experience it? We spend so much time in this life preparing. We study for tests; we do marriage prep, birthing classes, driving courses, etc. But when it comes to death, we seem to show up ill-prepared and learn by going through it. Maybe that is okay, but I believe it makes the experience that much more stressful. I am amazed that my medical training did not require me to be with a patient through this process. It seems this very important experience was simply omitted. Whatever happened to “see one, do one, teach one”? I helped deliver many babies in medical school, I helped with plastic surgery, including liposuction and pressure ulcers, I assisted with dislocated shoulders and surgeries on newborns who had complex birth defects. I could give you countless examples of how my medical training prepared me to better understand my patients. But when it comes to death, it seems that learning about it and being present for it was not a core competency. Ironically, we know it is one of the few certainties in life that is universal: we all experience death. Or, as one of my attendings used to say, “Nobody is getting out of here alive.”
I’m not sure of the best way to teach about end-of-life care, but I do believe that we all deserve to learn more about the process of death before we are faced with it. There are few moments in life that are more impactful and emotional, and it seems reasonable that prepping for that would make sense. I have heard so many horror stories from friends who saw a loved one suffer needlessly at the end of life. We should all be educated to know what the dying process is like and what we can do to ease this process for those we love. I am so thankful for the care my family members have received through hospice, and I wish we could all learn more from those hospice nurses before the final hours.
Shayla A. Sullivant is a child and adolescent psychiatrist.
