On Progression VS Decline in Work with Older Adults
How do we talk about the end of life?
End-of-life care has changed in so many ways from when I was first starting as a music therapist, especially in the way we talk to and about the folks we serve and how we communicate with them and their families about what they are experiencing. Over 20 years ago, we often talked about people declining. In our work with older adults, we talk about goals to help people maintain strength to help prevent decline. In hospice, we have to talk about “functional decline” because that is part of the criteria for being on hospice care.
But that is shifting for me. In my recent personal experience when my aunt was on hospice care at the end of her life, the hospice team that was checking in on us used a term that was novel to me, even with my extensive experience working in hospice. The language they used with my family and me was that my Aunt was progressing. When we were there wondering how much longer is she going to be in this state before her life is ended, the chaplain, nurse, and social worker would talk about how she had progressed since they saw her the last time and the social worker made a point of saying that they use progress rather than decline.
“Progress” instead of “decline”
I like the idea of progressing to the end of life, just like we progress from infancy to toddlerhood, to elementary age and teenagers, and beyond. The end of life is not a failure, it’s the closing of a book. We don’t decline to the end of a book when we’re reading, we read to the end, especially if it is a good book. It is also the same with a musical work like a song, an album, or a symphony. It does not decay to the end or decline to the end. We don’t stop halfway through that musical journey, as not listening to the rest of the song would be ridiculous. So, we look at the entirety of the musical work, whatever it might be. I think applying that metaphor to life works well for me.
The shift to using the word progress rather than decline will be helpful in my work with many different folks who have progressive illnesses or have degenerative conditions that are long-term and are not going to be cured by taking into consideration that we are walking with them to the end of that progression.
I would encourage you to consider the developmental stage of the older folks that we’re working with and the folks that are receiving end-of-life care as moving through progression rather than decline.
You can hear more of my thoughts on this topic in the following video:
