In the medical field, resilience is a concept often discussed in the context of children and adolescents. There is much discussion around understanding pediatric growth trajectories and assessing their various domains later in life. These domains include cognitive function, academic abilities and social adaptations.
With a growing interest in geriatrics, I began to wonder what resilience looks like for elderly patients, who unlike children, present their life trajectories to physicians much later. This is perhaps challenging and even uncomfortable to discuss for those who perceive resilience as a long-term goal — overcoming significant barriers in order to improve over time. Resilience may not seem as relevant for elderly patients who may be nearing the end of their lives.
How would resilience for an 85-year-old look different from a 7-year-old?
Can an elderly patient with Alzheimer’s disease who no longer has capacity to give informed consent show resilience?
How about a chronically ill patient on their deathbed?
I first confronted these questions as an undergraduate at Dartmouth when I joined Recollections, a choir composed of patients with dementia, their caregivers and student volunteers. On Saturday mornings, we met in the Howe Library in Downtown Hanover. Gathered around coffee and baked goods, we would exchange greetings. We sat in three rows and practiced familiar songs such as You are My Sunshine, Blue Skies and New York, New York. Once a song started playing, even patients who once seemed stoic started to mumble the lyrics. By the end of each song, the room was always filled with laughter, clapping and even impromptu dancing.
Next to me were elderly patients with dementia who were continually battling with chronic conditions. However, they were living and cherishing each moment with their loved ones. What blossomed between each line of every song was courage and strength that extended beyond the limitations imposed by their diagnosis. In these moments, I came to understand that resilience in the elderly does not have to be about long-term improvements. Rather, resilience can manifest in the present in the form of joy and a sense of connection. Having agency over fleeting moments like these, no matter how small, can be significant enough to maintain meaning and purpose in patients and their loved ones’ lives.
After returning to Dartmouth for medical school, I continued to serve elderly populations as a volunteer for the Dartmouth Centers for Health and Aging. I worked with nursing home residents living with dementia and helped them complete the Physician Order for Life Sustaining Treatment (POLST). First published in 2019, the POLST form is a standardized medical order that is designed to honor the wishes of chronically ill patients through the end of life. Compared to Advance Directives, POLST includes more specific orders regarding end-of-life care. Given that the patients in the nursing home no longer had the capacity to make medical decisions, we called their designated family members to elicit patients’ wishes and put them into writing.
I am reminded of a conversation with a patient’s sister back in April. After exchanging introductions, I started off the conversation saying, “Tell me about your brother.” On the other side of the phone, she began to tell me eagerly about his calm personality, past career as an engineer, love for fishing and annual baking around Christmas time. Although his progressive deterioration brought significant limitations to their lives and family dynamic, they still found ways to share moments over meals, daily walks around the nursing home and occasional field trips downtown. All I had in front of me was the patient’s name, but I could picture his loving life through the tender voice of his sister.
When I introduced the POLST form and explained her role as the surrogate decision maker, I was met with a few seconds of silence. Then, the patient’s sister began to share her doubts over not knowing exactly what she should do for her brother. She also expressed guilt over potentially choosing comfort over aggressive measures that may indicate that she was “giving up” on him. After acknowledging her concerns, I said:
“Imagine your brother in his prime, standing at the foot of his own bed, watching himself sleeping in the nursing home. Imagine that he knows what we know about his medical condition. What would he tell us to do?”
This “Foot of the Bed” scenario, taught during volunteer training, aims to help families put themselves in the patient’s shoes. Instead of agonizing over what they should do for their loved one, families are encouraged to consider what the patient would have decided for oneself. This shift in perspective forms the fundamental core of surrogate decision making.
“My brother was never fond of hospitals. I know he would want to die comfortably…” she said. Over the next hour, we were able to decide on comfort measures which included Do Not Resuscitate (DNR) orders, no intravenous fluids or feeding tubes and only palliative antibiotics. Nearing the end of the conversation, the patient’s sister expressed a sense of relief for having had the conversation.
Through my work with the Dartmouth Centers for Health and Aging, I further refined my evolving understanding of resilience in the elderly and their families. The days and hours immediately preceding a death are undoubtedly some of the scariest. Yet, here were families setting their emotions aside and making challenging decisions in accordance with each patient’s values. By proactively addressing one’s physical, emotional and spiritual needs during the dying process, they were turning the final moment of vulnerability into one of resilience. Being part of this conversation and helping patients maintain agency through the end of life was truly humbling and inspiring.
As future health care providers, we are taught to cure disease and extend lives as much as possible. However, my work with the elderly over the years has taught me how important it is to pause and ask, “What matters to you?” For some patients, their goal is indeed to live as long as possible using the most advanced interventions, even if it means frequent visits to the hospital. There are others who prefer to manage their condition at the nursing home so long as they can enjoy their favorite meal and go on daily walks with their spouse. There are also those whose priorities are to maintain comfort and dignity on their deathbed surrounded by their loved ones at home. All of these surely are equally powerful and beautiful stories of resilience.