Published on June 10, 2021
Death Does Not Mean the Patient Failed
“Home.” My mother pulled off her oxygen mask to give us one last request from her hospital bed. She then fell into a deep sleep and died peacefully three days later.
The Duck Pond
Each morning at home in North Cape May, N.J., my mom, Sue, enjoyed her morning coffee and completed the daily crossword puzzle at the dining room table overlooking our duck pond, which is dotted with cherry trees and a weeping willow. Over the years, Canadian geese would stop and visit, and our domestic ducks stayed because we fed them corn daily. Sometimes in spring, usually right after Easter, someone would call my parents and ask if they could drop off a few baby ducks that they regretted gifting their kids. The pond is now also filled with bright orange and red Koi fish from a friend who had too many. It’s a community, both in and out of the water.
The Diagnosis of Double-Hit Lymphoma
After feeling vaguely unwell and avoiding the doctor until it became an emergency situation, my mom was diagnosed with a form of non-Hodgkin lymphoma (NHL), called double-hit lymphoma (DHL). To me this sounded like a character from HBO’s The Sopranos had put a mafia hit on my mom’s blood and immune system. At the time, I hadn’t heard of this subtype of lymphoma. Hers was stage IV.
DHL is an aggressive type of B cell NHL, characterized by rearrangements (parts of genes switch places within chromosomes) in two genes. One rearrangement involves the MYC gene, and the other involves the BCL2 gene or sometimes the BCL6 gene, according to the Lymphoma Research Foundation. This diagnosis was a lot to take in and understand. So, our family took turns visiting with doctors and passed along the notebook to whoever was next to visit the research hospital in Philadelphia where she was receiving treatment.
The Dangers of False Hope
Back in 2011, her dream team of oncologists were amazing and helpful in explaining the treatment strategy, but they were still in the early days of understanding this cancer subtype. At first, they said that although it was aggressive it was also “very treatable,” two words we clung to in those days. It gave us hope — maybe too much.
The challenge wasn’t just the cancer, but my mom’s other health issues too, which included kidney failure. The doctors prepared for the long haul of treatment and put a port in her chest to administer drugs directly into her bloodstream, bypassing and protecting the veins in her arms. She endured cycles of EPOCH-R therapy (etoposide, prednisone, vincristine, cyclophosphamide, doxorubicin, and rituximab) and dialysis.
Since she’d been off her feet for weeks, and then months, she was no longer walking. On good days, she was sent for physical therapy at another facility with the goal of getting her strength back. On bad days, when her blood cell levels dropped too low, she went back to the hospital to continue treatment. But it wasn’t all bad — the food at the hospital was much better, my mom told us.
The treatments had some success killing the cancer cells, but not enough. Unfortunately, the doctors kept encouraging us to keep going, saying that we’d have her home after Christmas. We got into “go mode.” My Dad put up the Christmas tree immediately.
Assuming my mom might still be in a wheelchair, my dad had the first-floor bathroom remodeled to accommodate her. We all fell into a false sense of hope and when her condition deteriorated a few short weeks after the new year, we were deeply disappointed and angry.
Let’s Talk about Death
Cancer care is as much an art as it is a science. The treatment team doesn’t know exactly when a patient is going to die, but they could do a better job of preparing the patient and the family to withdraw treatment sooner and make their loved ones as comfortable as possible.
The taboo around talking about death looms large, and oncologists acknowledge their discomfort in finding the best way to communicate about it to patients and their families. An article in the Journal of Clinical Oncology by oncologist Scott R. Berry, MD, tackled this struggle.
When his patients who have incurable cancer ask how long they have to live he says, “It may be only a few months until the end,” or “until you pass away,” but he rarely says exactly what he means: “It's only going to be a few months until you die.”
Death is not a medical failure. It’s a fact of life.
“Viewing dying and death as merely a failure of medical diagnosis… trivializes the final event of our lives, stripping it of important nonmedical meaning for patients, family, and society,” Jack D. McCue, MD, wrote in a 1995 article in JAMA.
The irony of this situation, avoiding the topic of death, was not lost on my dad, a fourth-generation funeral director. Death was a commonplace topic during many meals in my childhood home, but while we talked about burial or cremation, we didn’t talk about comfort care during the dying process. And big surprise, funeral directors and their families do not have a magical way to grieve. It’s just as awful for us too.
When someone from the community died, my dad would try to be positive and not read too much into it. He’d say, “It’s just one of those things.” I later realized it was from a Frank Sinatra song about heartbreak. That phrase is on the nose.
How can we normalize talking about death in a way that can be meaningful and memorable, in a positive way?
For one, the language of death from cancer and its side effects is often centered around winning and losing. If a “cancer warrior loses their battle,” it sounds like a failure on the part of the patient, the doctors, the supportive staff, and relatives. The treatment failed, the tumor failed to respond, but the patient didn’t fail. We need better ways to talk about death and dying.
Some phrases have evolved. I hear more about celebrations of life rather than funerals. I like that a lot.
Playing Her Favorite Songs
Once mom’s organs began to fail her with no good outcome expected, we were told and fully understood it was a matter of hours or days. We played big band music, Simon & Garfunkel songs, and told stories around her bed like it was Thanksgiving because the nurses reminded us that she could hear, even when in and out of consciousness. Family, friends, and hospital staff came in to say a final goodbye to my mom, but also to my dad who was next to her bedside almost every day.
On the morning of my mother’s death, a social worker popped in when my sister and I were by the bedside. She gave us the most poignant advice.
“Your mother labored to bring you into this world, and you will labor to lead her out.”
Delivering on Promises
The duck pond was and still is, a witness to many life events: holidays, prom photos, graduations, and weddings. I had imagined that we’d move the dining room table out of the dining room, place a hospital bed there, and let mom watch the ducks go by one last time.
I believe we can as a society collectively agree to do better for dying people by being more upfront, asking what matters to them during their last moments, and having their final wishes granted.
See Our Sources
- About Lymphoma. Lymphoma Research Foundation. About Lymphoma. lymphoma.org/aboutlymphoma/nhl/dhl/
- Just Say Die. Journal of Clinical Oncology. (2016). ascopubs.org/doi/10.1200/JCO.2007.12.3224.
- The Naturalness of Dying. JAMA. (1995). https://jamanetwork.com/journals/jama/article-abstract/387754
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