{"id":1977,"date":"2023-05-23T09:32:04","date_gmt":"2023-05-23T13:32:04","guid":{"rendered":"https:\/\/www.athenainstitute.com\/ahp\/?p=1977"},"modified":"2023-06-08T16:12:45","modified_gmt":"2023-06-08T20:12:45","slug":"reflections-on-my-hospice-experience-a-call-for-healthcare-that-is-more-human","status":"publish","type":"post","link":"https:\/\/www.athenainstitute.com\/ahp\/reflections-on-my-hospice-experience-a-call-for-healthcare-that-is-more-human\/","title":{"rendered":"Reflections on my hospice experience: A call for healthcare that is more human"},"content":{"rendered":"

This past school year, I had the opportunity to temporarily join \u201cJulia<\/em>\u201d as she navigates declining health and increasing separation from the kind of life she formerly led. I came to know \u201cJulia<\/em>\u201d as a reserved, soft-spoken, mellow individual, surrounded by a loving family. Upon arriving at her room for our weekly visits, a cup of \u201cJulia\u2019s<\/em>” favorite Wawa coffee often signaled that her husband had just stopped by. A fresh coat of pink polish on “Julia’s<\/em>” 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\u2019t 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.
\nOne 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.
\nThankfully, Athena\u2019s numerous resources came to my rescue: the hospice training enlightened me about how different aspects of aging, such as dementia, affect one\u2019s experience of the world. This knowledge informed my interactions with \u201cJulia<\/em>\u201d, 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\u2019s days are numbered, \u201cJulia<\/em>\u201d was actively living to her end. Hospice volunteering, I learned, puts aside the usual emphasis on \u2018doing for others\u2019, and concerns about fleeting trivialities, to focus on \u2018being for others\u2019. Tapping into the skill of presence, I practiced intentional listening and reading facial expressions and body language to decipher someone\u2019s feelings when they can no longer put everything into words.
\nKnowing 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 \u2018dealt with\u2019. Through resources such as Dr. Atul Gawande\u2019s 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\u2019s downfalls myself: although \u201cJulia’s<\/em>” nursing home scheduled activities for its residents, it wasn\u2019t clear how\/whether bed-bound residents, like herself, could participate. Moreover, that the TV was constantly on despite \u201cJulia’s<\/em>” 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\u2019s end of life is meaningful, personal, and, as Dr. BJ Miller put it, imbued with \u201cwonderment\u201d.
\nThe 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 \u2018modernity\u2019. For instance, by recognizing that \u201cchange and impermanence are not just spiritual tenets but laws of nature\u201d, Dr. Sunita Puri became more accepting of life\u2019s fragility. This revelation helped to alleviate the toll of her patients\u2019 deaths, placing Dr. Puris in an improved position to support her living patients.
\nPersonally, 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.<\/p>\n

References
\nBeing Mortal, Dr. Atul Gawande
\n\u201cWhat really matters at the end of life\u201d, Dr. BJ Miller
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