What’s Normal About Hospice?
I started with all sorts of cliché ideas of what hospice work might be like, how it might impact me, and whether it would change some perspectives I had on death. While my developing hospice experience has been cut somewhat short due to Covid, there was much that I learned from my visits, and perhaps some that I can share.
Nothing about hospice that was specifically supernatural, it actually served more as a mundane grounding experience for me. As a millennial, my whole life has been somewhat confined to a computer screen where school and work were a series of boxes on a calendar and the concepts of life and death were reserved for rare moments of philosophical mastication. Aging and death is the type of thing that most people want quickly acknowledged in an awkward sympathy card and hidden under a pile of nervous tears.
Previous to hospice, I entered this type of work to begrudgingly fulfill my high school’s compulsory community service requirement for all students. I was then dubbed, “Activities Coordinator” at a medium-sized assisted living center about a 5-minute walk from school. On the surface, I would half complain with my peers about the drudgery of the requirement, but I often found myself looking for more opportunities to understand this life stage, this became even more pronounced after a close family member had passed away.
I think death is framed in the media as an anomaly that shouldn’t / couldn’t happen and is often commingled with blame. As if death was just a product of a few good and bad characters in a comic book and not a stage that all of us inevitably face.
I really wanted to understand that.
Years later, I entered hospice training and learned that hospice is apparently an underdog in healthcare. All the work of “saving lives” is no longer fastened to the know-how of human beings and instead what is left is to patiently learn to live each day you have left. There are a few metrics and ranges to show progress, but the focus shifts to finding the quality already present in life despite the mounting limitations.
Society tends to view any physical limitation as a curse, so the word hospice is often synonymous with “decline”. It is actually a reality check from the illusion of value being only ascribed to the vigor of youth and instead helps you view life from a more introspective lens. The happiest patients were the ones who found meaning in small things and realized although their prognosis was shorter, no one has forever, they only have the hope of the next day. How is that different than anyone else?
Now to destruct my own little lecture up there: selfishly, I approached my first hospice patient with the idea that it would be as interactive as assisted living. I was still in a specific type of “giving mode” where you want to really feel like you did something, but ultimately that made it more about me than the patient. I was hoping to interact with the quirky personalities I met as a young student. I wanted to, in essence, “have fun”.
Hospice is quite different from that, it is more delicate, but the experience flourishes as fodder for understanding the depth of “normal things”. In one visit, my patient’s wife was telling me how her husband’s mood had suddenly shifted when they changed his bed. He was nonverbal, so it took close assessment and a few tries to switch to a slotted bed that allowed for more comfort and less risk for bed sores. It sounds very boring to say a bed made such a huge difference, but that’s what hospice was — little things providing relief for an entire family and that in itself being a bonding agent. It lived in conversations and maybe the extra few minutes to notice the position of a pillow. It took away all my ability to be self-righteous about it and forced me into the reality of just being there, where real empathy training lived.
The overall lesson I gleaned from this stage of life is that it is profoundly mundane, and I say that with the utmost respect and a complete desire to go back to this work as soon as I can.
