This past school year, I had the opportunity to temporarily join “Julia” as she navigates declining health and increasing separation from the kind of life she formerly led. I came to know “Julia” as a reserved, soft-spoken, mellow individual, surrounded by a loving family. Upon arriving at her room for our weekly visits, a cup of “Julia’s” favorite Wawa coffee often signaled that her husband had just stopped by. A fresh coat of pink polish on “Julia’s” nails likewise indicated that she recently enjoyed her granddaughter’s company. Our visits generally consisted of watching TV, attempting a word puzzle, listening to soft music, or reading aloud. Julia wasn’t very chatty, so we briefly exchanged comments, questions, and replies, some days more than others. Nonetheless, as I learned more about her and she grew more comfortable with me, we became solid acquaintances.
One of my biggest takeaways from this experience, that is relevant to my medical school prospects, is the insight I acquired about how to interact with patients, especially patients at the end of life. As a somewhat socially awkward introvert, I already tend to view socializing with apprehension. Adding onto this was my limited experience with the elderly, dying, and death itself. Thus, I was, at the start of the program, encroaching on unfamiliar territories.
Thankfully, Athena’s numerous resources came to my rescue: the hospice training enlightened me about how different aspects of aging, such as dementia, affect one’s experience of the world. This knowledge informed my interactions with “Julia”, which I learned could be made more effective by speaking clearly and concisely, and (re)introducing myself regularly. Moreover, through the Chaplain meetings, I realized that many of my concerns surrounding hospice volunteering were unfounded, in that they were dwarfed by the fact that I was in the presence of someone living their final moments. While everyone’s days are numbered, “Julia” was actively living to her end. Hospice volunteering, I learned, puts aside the usual emphasis on ‘doing for others’, and concerns about fleeting trivialities, to focus on ‘being for others’. Tapping into the skill of presence, I practiced intentional listening and reading facial expressions and body language to decipher someone’s feelings when they can no longer put everything into words.
Knowing how to interact with others in a way that honors their humanity is especially critical in regards to hospice residents, considering how these individuals are conventionally ‘dealt with’. Through resources such as Dr. Atul Gawande’s book Being Mortal, I was able to better appreciate how our society has and continues to institutionalize the elderly and dying in drab nursing homes or sterile hospital rooms, often robbing them of community and individuality and reducing their quality of life in the process. While variation exists, I witnessed some of the system’s downfalls myself: although “Julia’s” nursing home scheduled activities for its residents, it wasn’t clear how/whether bed-bound residents, like herself, could participate. Moreover, that the TV was constantly on despite “Julia’s” visual and auditory difficulties struck me as a sore attempt by staff to occupy her and to temper her loneliness or distract from her dissatisfaction. Clearly, more needs to be done to ensure that people’s end of life is meaningful, personal, and, as Dr. BJ Miller put it, imbued with “wonderment”.
The larger question underlying these ills, and forming my final takeaway, is: if physicians are explicitly taught that death must be avoided, or implicitly delivered this message via curricula that ignore death although, how can we expect average citizens to be comfortable with the finality of their lives? If human wellbeing is truly in our best interest, a reevaluation of how aging, death, and life are conceptualized in our medical institutions is warranted. My hospice experience has motivated me to continue engaging in such important conversations that challenge mainstream biomedicine; conversations that question the value of certain aspects of our biomedical philosophy, like its shunning of spirituality and other factors that humble us in the face of other lifeforms and the universe. Death, in particular, illuminates the ways in which science and spirituality overlap, and how embracing their interconnections proves more helpful than forcing them apart in the name of ‘modernity’. For instance, by recognizing that “change and impermanence are not just spiritual tenets but laws of nature”, Dr. Sunita Puri became more accepting of life’s fragility. This revelation helped to alleviate the toll of her patients’ deaths, placing Dr. Puris in an improved position to support her living patients.
Personally, I am still working toward accepting the inevitability of my own death and the impermanence of those most important to me. My hospice experience, by simply providing a space where death could be considered, was a major step forward in this direction.
References
Being Mortal, Dr. Atul Gawande
“What really matters at the end of life”, Dr. BJ Miller
“The Lesson of Impermanence”, Dr. Sunita Puri