The following story is one of my saddest memories of my time working in hospice.
Susan was a sixty-three year old widow, who lived alone in a small rural town. Her tiny three room apartment was nestled behind the stores on the main street of the town and a grain elevator.
The first day I met Susan, it was clear to me she would be her best advocate. Susan had a son, who lived in the area, but who she rarely saw. He would assist her with grocery shopping, some transportation, and would occasionally visit her, but he was distant and unavailable especially when it came to her health care needs.
Susan received hospice services due to a malignant oral tumor. Following radiation therapy, she was left with an non-healing open wound on the side of her face and neck. In addition, she was experiencing kidney failure again. Susan had a kidney transplant previously, however the donor kidney was now failing.
Initially, Susan only wanted me to visit once a week. However, her wound care and dressing change was required three times a week. When we talked about her pain, Susan confessed she was frequently experiencing pain before it was time to take another dose of her pain medication and often got little relief from her current pain medication. She did agree with the visit frequency, however insisted the visit would be for only an hour at most.
Susan spent most of her days alone in her apartment reading. She had no television and poor radio reception. The public library was only a block from her apartment, so her son would take her there once or twice a month while she could still manage leaving her home.
As time went on and her functional abilities declined and symptoms required more frequent assessment and management, it became apparent plans needed to be made as Susan’s health declined. She was having difficulty managing self administering her pain medication. Even with pre-loaded syringes of her oral liquid opiate and written instructions of when to take it, it was increasingly unclear how much and when she was taking it.
On a Friday afternoon, I asked the social worker to accompany me to Susan’s visit, so we could begin discussing how Susan was going to manage her care if she continued to live alone. Her son had been clear that Susan could not live in his home and he could not stay in hers. Poised on one end of Susan’s couch and the social worker seated at the other end, I began, “Susan, I am very concerned about your well-being and safety.” I went on to talk about all the specific reasons for my concern, such as pain control, wound management, social isolation, decreasing ability to independently carry out her activities of daily living. The social worker echoed my concerns and then proceeded to offer suggestions for her to consider related to alternative living arrangements for her. Because of Susan’s financial situation, her only real option was to move to a nursing home in a nearby town.
Susan listened carefully and courteously as we “experts” spewed our concerns and expertise about what was best for her. When we finished speaking, Susan looked me directly in the eyes and said, “You know if I move to that nursing home, I am going to die unhappy and sooner. I’d rather take my chances living here and die with some sense of dignity and happiness.” Susan was right. I did not know where to go next related to a plan of care for Susan. The social worker remained silent. A heavy silence filled the room. “Dear God,” I said to myself, “I am totally lost, give me a plan and some words to share with Susan to help her remain in her home and die with dignity and happiness.”
Guess what, God heard me! The number one challenge for Susan was to manage her pain. I had already been measuring out her pain medication and prefilling syringes for her so she did have to think about how much medication to take. I had left a written schedule with the times to take her medication. The biggest issue with this was, the medication made her sleepy, and she would often miss doses because she was asleep, then when she woke the pain was unbearable. So, the plan was to call Susan every six hours and remind her to take the medication at that time. Although the rest of concerns such as the wound care, social isolation and assistance with activities of daily living would not be “ideal,” Susan would be able to remain at home, at least for a while longer. The social worker and I agreed this would only be temporarily, as Susan would still require more care in the near future. However, we saw this plan as buying her time while figuring out how to best meet her needs.
Susan found this plan acceptable, and from my perspective it seemed very doable. We would give the plan a trial over the weekend and re-evaluate its effectiveness on Monday. I called Susan and six that evening, again at midnight, and at six the next morning. That left the rest of Saturday and Sunday for the on-call hospice nurse to call Susan.
On Monday morning the hospice supervisor made the decision to stop the calls to Susan. I was off work, a couple of days later, when I returned to work, Susan had been admitted to the nursing home. She had not been able to manage her pain without the calls and had taken too much of her medication. The side effects of the medication caused Susan confusion, increased sedation, thus causing her the inability to make her own decisions and unsafe in her home. Her son was called, and made the decision to move her out of her home.
I made a visit to Susan in the nursing home only once before she died. She had very few words to share that day, her eyes told me everything. I apologized to her for not being able to help her die at home. She died a few days after my visit and within the week of her move there.
Susan was going to die from her terminal disease, she knew that. I will never forget Susan. I will alway believe Susan’s life ended earlier than needed. She lost control of her dignity, hope, and happiness.
Lesson learned: I could not control Susan’s outcome. I cannot control anyone’s outcome. What I can do is encourage early planning for those individuals and families that may not be able to stay and die in their own homes.
Currently, I have a family member cousin who is terminal. Her spouse is legally blind, her daughter is dealing with her own health challenges, and her son is in denial. What’s the plan for her future care needs? What is her spouse’s plan for his living arrangements? He will not be able to live alone. There currently are no plans. She has given me permission to help. I will do my best to help facilitate her and the family in getting started making necessary plans.
My last suggestion here today, especially if you live alone, even if you are currently healthy, begin making your plans for your end of life care now. Have the conversation now with your family concerning your wishes and desires, then review it annually.
Five Wishes at https://www.fivewishes.org/resources/
This is a great resource for starting the difficult conversations related to end of life care.
Being Mortal: Medicine and What Matters by Atul Gawande (book available on Amazon) The attached video is almost an hour, however it's so rich in information and thought provoking.