Over the course of my training and practical hospice volunteer experience, I connected and felt entrusted by my assigned patient and developed a deeper understanding of hospice care.
My patient Alice is a 93-year-old lady with Alzheimer’s, although the reason she was sent to hospice was unknown to us due to privacy. Alice is small and skinny, veins on her arms and her face stood out, and there remained a few gray-ish blonde hairs on her head. Every time I go there, she is always on her bed and under a thick blanket, sometimes sleeping, sometimes watching TV. Her body under the blanket seems small and light.
The first time I went to visit Alice I had no idea what to do. The other volunteer, Daisy, had more experience so she suggested reading cards to Alice. However, because Alice was not really responsive, when we asked if she wanted us to do anything (e.g. read cards from her friend), she usually did not respond at all, or simply nodded her head. And when we actually read the card to her, I saw that her eyes were wet. Besides that, rather than excited, Alice seemed confused (even a little bit scared) when she saw us and heard us introduce ourselves. Her confused face stuck in my head and made me question my purpose in coming to volunteer. Alzheimer’s can lead to memory loss, confusion with time or place, and trouble recognizing social relationships, etc. My concern was that, for a patient like Alice, if we only come once every one or two weeks, she’s likely to forget us and think of us as strangers every time we visit. Will this eventually become a burden and fearful thing for Alice? Will I ever be able to be entrusted by Alice? Also, since she was not responsive to our questions, how do we know we are doing things that are good for her and how she wanted to spend her time?
I talked over my concern to my volunteer coordinator Walter and he gave me some insights. Although you cannot hear what they want, you can trust yourself for having a good heart when visiting. You make choices you think are good for them since sometimes you would never know how they think. Even though reading cards might make them sentimental, it doesn’t mean it is a bad emotion to have, maybe the cards just reminded Alice of some precious memories she had with her friends.
I carried this thought with me in my later visits to Alice. When she’s sleeping when I come to visit, I usually sit next to her bed and do some simple drawing. And when she’s up and open for conversation, I show my drawing to her and check in with her. Sometimes Alice is not very responsive, so I would pick a card and read it to her. Alice remained mostly silent during my earlier visits until one breakpoint I remembered so vividly – after I said bye to her, she looked at me, and spoked a full sentence very slowly: “Bye, take it easy, honey.” I sensed gratitude and appreciation in her words and was so touched for her effort in trying to communicate with me. It was an unforgettable moment from my hospice volunteering. Besides this verbal response, I also sensed more and more nonverbal responses from Alice throughout my visits. I think this was because I paid more attention and effort in connecting with Alice, and was also because the trust between us built up each time I visited.
My hospice experience reminded me of the importance of actively listening to what patients want from the book Being Mortal. Neither paternalistic relationship (ensure that patients receive what physicians believe best of them) or informative (physicians tell patients about facts and figures and leave the rest to patients to decide) are what patients desire. Patients want physicians to actively listen and provide guidance, and this is known as the interpretative relationship. Volunteering at hospice is my first time getting to know a patient and actively listening and interacting with them. I will carry this feeling with me along my journey to becoming a doctor.