Wilson’s Choice: part 1
Sally’s father-in-law Wilson, right, and his son Gary.
Sally Whitten is a retired respiratory therapist who spent most of her career at Maine Medical Center in Portland. Her work included adult critical care and 10 years as the Director of Respiratory Care. She was involved in multiple end of life discussions with medical teams, family members, and whenever possible, patients themselves. “Those hospital discussions, combined with end of life discussions with my own family, taught me the importance of this topic,” she says.
My father-in-law, Wilson, was a true New Englander, born on a small farm where raising your own food, animal and vegetable, chopping fire wood, and working with your hands to both fix and create were required activities. He took great pride in his work as a machinist and in restoring an old homestead into a beautiful home for his family. He loved his family, his country, and his church and believed a strong work ethic and common sense would help you overcome most adversity. After retirement, Wilson was happiest in his beautiful gardens, in his woodworking shop, spending time with family, and chopping and stacking his fire wood, an activity he continued until age 82.
For many years, Wilson cared for his wife as she slowly lost herself with Alzheimer’s disease. After her death, Wilson struggled. His world narrowed. Many of his contemporaries had also died. He’d been living with diabetes and heart disease for many years, and my husband and I became increasingly concerned with how he was managing. After a hospitalization for severe heart failure, we asked him to move into our home. My husband was retired and could provide support with daily activities, and I’d be home after work to help with meals, medications, and family time (which for Wilson included, without exception, nightly episodes of “Wheel of Fortune” and “Jeopardy”).
A few months after he moved in I discovered a copy of a recent lab report. I was shocked to learn that Wilson was in stage-5 renal failure. The medical community utilizes a 5-stage system with renal failure that is based on your kidney’s ability to filter waste from your body. The last stage, stage 5, indicates complete renal failure or end-stage renal failure. At this stage, patients should begin dialysis.
My husband I were completely taken by surprise by the diagnosis – and the fact that Wilson had known it for years. We were also unaware that Wilson’s physicians had tried to get him to start dialysis. Diet plays a significant part in managing renal failure, so I searched online medical sites to begin helping manage Wilson’s disease. I wanted to help and read all I could on how best to slow any progression. Truthfully, it was years too late for a new meal plan to help, but you‘re desperate to provide any support you can when your loved one is facing a terminal diagnosis.
My husband and I sat with Wilson to try and understand what he knew about his disease and what he felt about treatment. What were his options at this stage? I work in health care, so I spoke with members of the dialysis team at the hospital so I could better understand the situation. I asked Wilson if it would be helpful if I joined him as he met with his primary care physician and his nephrologist (a specialist in kidney disease) so we’d both have the information needed for him to make decisions. Wilson agreed and we met with his physicians to discuss available options for his care.
Once we understood the choices and options available, my husband I sat with Wilson to review each. I want to stress that these options are very specific to our family only. Every individual, and their families whenever possible, make decisions based on their own circumstances. I will share with you Wilson’s options, but your you may have additional resources available that would change your own specific list of choices and options.
Wilson’s choices:
1. Kidney transplant: Wilson asked his primary care physician if he was eligible for a kidney transplant. She explained that she could place his name onto the National Kidney Transplant list, but his odds of receiving a kidney at age 84 were remote.
2. Dialysis: This would require Wilson moving to an assisted living facility close to a dialysis center. At the time, my husband was retired, but disabled and having some vexing medical issues of his own. Driving his dad to dialysis appointments was not possible. I worked full time, and there is no public transportation in our rural area. Dialysis patients must attend three appointments weekly lasting 2-4 hours each. While dialysis is possible at home, my husband’s medical needs made this impossible for us. If Wilson were to get dialysis, he would be hospitalized to get a dialysis port placed.
3. Medical Management: Wilson could decline dialysis and manage his disease and symptoms at home as he was currently doing. He understood that while dialysis is not a cure for renal failure it may be life-prolonging, it. Medical management could be life limiting.
I wish I could report that this list of options made the decision of dialysis versus medical management easy, but it didn’t.
Many times over the years, I’d heard Wilson say, “Dying is part of living.” He’d say it after a funeral or as he read an obituary. He wasn’t callous; I believe it helped him philosophically absorb these losses. Of course, making this statement and then facing decisions regarding your own death are two different things. Speaking of death in the abstract is very different from facing your own death head on.
The difference showed up as Wilson repeatedly changed his mind about treatment. Some days, he’d wake up firmly committed to dialysis, only to change his mind by lunch.
Once, he changed his mind three times in one day.
I don’t want to gloss over this point: It was frustrating for us and I’m sure it was frightening for him. For instance, we‘d review the medical facts about dialysis and explain his options, and he’d choose medical management. Then within hours he’d reconsider, pointing to examples of “others” getting dialysis and “doing fine.” We’d support his decision, and remind him that receiving dialysis required his moving to a local assisted living center. And then he’d change his mind again.
It was heartbreaking to watch this man who made firm decisions throughout his life struggle with this one.