Understanding End of Life: A reflection about mortality and the patient experience

Since first viewing Tom Jenning’s Being Mortal and reading Atul Gawande’s Being Mortal: Medicine and What Matters in the End, I was struck by the idea of the two “unfixables.” The discreteness of the two items yet their broad and encompassing nature, when identified, speaks to the inherent complexity behind what are seemingly simple words: aging and dying. These natural life progressions are often met with different reactions depending on positionality. A patient with a terminal illness, for example, may fear the approach toward death because it involves the acceptance of or at least confrontation with the unknown. A physician may fear death because it is ostensibly perceived to reflect poorly on their ability to treat, heal, and restore. However, the awareness of mortality and the organic course of aging is crucial to ensuring a peaceful life and comfortable end of life for patients. My Hospice work has taught me a great deal about the lived experience of aging and dying and the critical role played by personal support systems to facilitate a person’s journey through these inextricable stages.
My patient was not aware that she was receiving Hospice services. This is a unique case, as I am told by my volunteer coordinator that most patients are informed of their status upon enrollment. However, my patient’s cousin is her primary caretaker outside of the nursing home staff and has opted not to divulge anything Hospice-related to my patient. Out of respect for this, I engaged with my patient as a friendly visitor simply coming to provide companionship. Throughout the conversations I had with her during my visits, I learned about her close connection with her family and the reunions she looks forward to every month with them. She also briefly shared about her stroke and how it has caused her to be unable to move freely, but that she finds joy in taking trips to the hallway in her wheelchair with the assistance of her nurses. Most recently, she told me she was looking forward to being able to walk soon and travel to new places. I carried the dialogue forward by asking her where she wanted to go and what she wanted to do, but a part of me also realized that these may be signs that she is nearing her end of life (I remember reading and listening to a talk about this in Prompt 1.7 and others). I had also recently been told by her cousin that a new mass had been detected in my patient’s chest, which she is also unaware of, and that she has been declining steadily over the last several weeks.
This was difficult news for me to hear. I took a moment to comfort my patient’s cousin before stepping into the room for my visit with my patient. As usual, the animal channel had just aired a new episode and we spent some time talking about her favorite animals that she saw before continuing to talk about the weather, pastimes, and how she was feeling recently. She told me that she had been feeling better. This moment resonated with me because I realized that sometimes, biology and experience are seemingly at odds. Of course, the former is universally accredited in the medical space, but Hospice centers the latter as being equally valid. The importance of a patient’s experience with their illness and expression of feelings in the moment cannot be understated. As Gawande expresses, “Measurements of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence.”
Over the course of my engagement with Hospice, I have gained new perspectives about what it means not to fundamentally view death as an enemy, but rather as an inevitable conclusion that no one is immune to reaching. One’s end of life can still be fulfilling and comfortable, and thus the end of life does not have to be ever-feared. Hospice aims to provide such conditions for its patients. These notions inform the way I situate the patient and their long-term well-being at the center of their healthcare plans and view the job of a physician to guide the patient with their best interest in mind. The value of this program is evinced in that I feel better equipped to enter a profession where I know that the goal of my job is to help my patient achieve their health-related objectives, and not necessarily be driven by an agenda that defines my success by avoidance of death. I intend to pursue a career in geriatrics in the future, keeping my Hospice work and all I have learned about life, death, and compassion at the heart of every patient encounter.