I was very nervous the first time I walked into the assisted living facility. I was worried about many things: finding my assigned patient, connecting with her, and making my visits as beneficial as possible. More than anything, however, I was afraid of death. I was afraid of growing attached to someone who would likely be gone soon. Meeting my patient, Sophia, allayed some of my worries. She is spunky, she loves chocolate, and she has a wonderful sense of fashion. Over the course of my visits, she frequently talked about her childhood, speaking to me either as though I was her sister, or more often, her daughter. Sophia has dementia, and as a result the stories she told me were somewhat jumbled and confusing. Quickly, however, I learned that my level of comprehension was not fundamentally important to our interactions. Sophia seemed to really enjoy just having personal attention and someone to talk to one-on-one.
Because of my time with Sophia, I see palliative care in a new light. As someone who does not have much experience with death, I assumed that it was often easily predictable. I imagined that a person would slowly lose the ability to do certain activities and that their condition would gradually worsen until one day they were gone. My experiences with Sophia taught me that this assumption was far from accurate. I visited her about once every week, and each time she was in a different state. Sometimes she seemed to recognize me, and other times she barely acknowledged my presence. For two weeks her voice was so quiet I could not hear her, but in subsequent visits she was loud and joyful. The ups and downs of patients who have chosen palliative care can be highly unpredictable, even in the case of a patient like Sophia who has a relatively common, well-studied condition. Therefore, the best way of preparing for a patient’s death may be simply making every day as enjoyable and comfortable as possible for that person.
Participating in the hospice program has changed my fears regarding death. Whereas before I was concerned about my own feelings of loss that follow someone else’s death, I am now occupied with the knowledge that death for so many is not as good as it can be. During training and monthly meetings, we discussed how the healthcare system in the United States treats declining patient. While many people die in hospitals, most would prefer to die in their own homes. Likewise, doctors are often uncomfortable while confronting mortality with their patients. Due to my participation in this hospice program and my time with Sophia, I have become increasingly interested in improving the way death is regarded in our culture and healthcare system. Rather than something to be feared and avoided, death brings the opportunity to plan for a meaningful and comfortable end-of-life, and increasingly, one that involves palliative care.