How do we die well?
Written by Cherri Ellis
Photographed by Liesa Cole
Life is beautiful in many ways, but one of its most tender-sweet qualities is its temporary nature. Nobody lives forever. As you read this, you may not know when and how, but if you are living right this red-hot second, it is simply a matter of time before you are not. One day, we will each die. On all of the other days, though, we will not. So, as uncomfortable as it feels to consider, I ask: How do we keep living until we don’t? Life should be allowed moments of beauty all the way to the end, so what really matters then? According to the experts, it is three things: comfort, peace, and legacy. The experience of dying deserves intention and honor, and there is a group nearby us who is getting it right.
I recently had the privilege of spending some time with the University of Alabama at Birmingham (UAB) Palliative Care team on the Palliative and Comfort Care Unit at UAB Hospital. I wanted to know about a new program called “Remember: A Legacy in Art,” where the families of seriously ill patients were gifted physical reminders of their loved ones. The right photograph, even one as simple as a close-up of their hands clasped in each other’s, could provide peace and bring honor. Luckily, I was able to bring with me the uncommonly gifted photographer Liesa Cole.
Palliative care is often misunderstood. It is not limited to hospice and the final moments; instead, it is about quality of life to those and the loved ones of those who are suffering life-threatening illness. I was served by this group’s outpatient program during my dance with cancer when I considered losing my marbles. Thankfully, I neither went nutty (er) nor lost that bout with cancer, but that is a subject you cannot un-see once you’ve stared it down. The people who do this for a living are frequently asked if it is a higher calling. Medical director Dr. Rodney Tucker smiles at that notion and gives a pragmatic reply. “It is not a higher calling, but it is a medical specialty that is certainly an honor,” he says. On the wall in the unit there is a beautiful piece of compilation art made by tiles created by members of the staff. On Rodney’s tile is written, “Through every exit is an entrance to another place.” His upbeat and respectful attitude represents that of the entire caregiving team. Nurse manager Elizabeth Byrd schedules two departments of nurses but never cross-pollinates their schedules, acknowledging the special attributes needed for the unit. While some patients go home to hospice care, the average stay on the ward is six days.
The unit doesn’t look like a typical hospital. Gone is the harsh lighting and sterile-looking atmosphere of a structure designed to address disease and trauma. The colors are soft and warm, and a comfortable den area has a fish tank and art supplies. Nicole Morris is a massage therapist who offers bedside massage to patients and chair massage to family members. She is easy to talk to and listens well as her therapeutic touch eases out tension and pain. On any given day there are visits by music therapists like Kim Hamrick, who has her guitar and is ready to take requests. She carries an iPad in case she has to quickly learn a song she doesn’t know. One 80-year-old woman wanted a Journey song. One other gentleman felt like hearing “Bony Fingers” by Hoyt Axton. Nonresponsive patients are always assumed to be able to hear, and so she found out from a patient’s daughter that his favorite song was Sade’s “Smooth Operator.” One time she was bedside with a non-verbal advanced dementia patient who hadn’t moved or spoken in three days. The patient’s daughter asked if she knew any hymns, and when Hamrick started singing “Just a Closer Walk with Thee,” the mother unbelievably started silently singing along. Hamrick sang hymn after hymn—maybe 10 in all—as the daughter sobbed happy tears watching her mom mouth every word.
Not everyone is into hymns. Mr. Haynes wanted to hear “Sweet Home Alabama” and then a little Hank Williams. He was alert and happy to chat, telling me about his days as a long distance trucker and the time he bought his dream Harley Davidson and drove it home. He made me laugh at his stories about how he and his wife have two cats but only one can be considered trustworthy. I asked if I could get him anything, and he said, “I have zero pain. I haven’t had any pain since I got here.” As I went to leave, he said, “Hey, I heard there were some animals here?” Haynes’s next visitors were Dusty and Buddy, two uncommonly calm Shih Tzus.
Hand In Paw is a nonprofit that provides therapy through very well-trained volunteers and their pets. James and Janice Clifford have been bringing Dusty and Buddy to the Palliative Care unit every week for years, and they beam as they talk about how much they love it. Once a woman ran up to them and said, “Oh my gosh that looks just like my mom’s dog! Can I tell her it’s her dog?” She tucked the dog on the bed, and her mother didn’t open her eyes but miraculously reached for the dog and began petting her. If you have ever had a beloved pet, you can understand how that particular bond would outlast other senses.
Buddy and Dusty help the families on the unit as much as anyone. When I met Crystal, she had been juggling a 2- and 3-year-old in her father’s room. As peaceful as the atmosphere is, this is a hugely stressful and painful time. There is a lot of uncertainty and waiting and condensed family dynamics to deal with. As the kids played with the dogs, she proudly told me about her dad, who lay quietly nearby. He worked for NASA for 18 years, so he was a real live rocket scientist. He could make anything out of wood, and he is the biggest Elvis fan in the world. Saturday is his birthday, and there is a party planned in his room. The cake is ordered and the 2-year-old grandson has an Elvis costume to wear.
We remain ourselves till the end. The best palliative care does not allow patients to be identified by their illness. What you are in life you are while there: teachers, parents, pet owners, Elvis fans—or loving husbands.
Ronald Fagan and his wife, Mary, had been married for 56 years. His room is covered in photos of his five grown children, and he decided a few days ago that he wanted to renew his wedding vows. With some fast planning and the help of his caregiving team, that is exactly what he did. The chaplain, Cory Agricola, was called. A cake and champagne were brought in. The music therapist quickly learned their favorite song, “More,” by Andy Williams. Dr. Holcombe stood up as the best man. When Mr. Fagan kissed his bride, RN Estella Holmes threw tissue paper confetti into the air.
In his Ted Talk, palliative care physician B.J. Miller challenges us to shift our perspective, reminding us that perspective is a gift humans are given that allows us to change our approach to a fixed fact.
That we will die we cannot affect. How we will die, we can. It seems that what matters in the end is actually what matters now.
Comfort. Peace. Legacy.