Two years ago, my beloved eight-five year old Aunt Mary was faced with the decision about beginning dialysis due to chronic renal failure. Aunt Mary called me one night to tell me her nephrologist had talked with her about the need to start dialysis within the next few months. He told her to go home and think about it. She said he encouraged her to make an appointment with his nurse practitioner to talk with her and learn more about what dialysis entailed.
When she called me, she was of course upset and was struggling with the news. She wasn't sure she wanted to depend on dialysis, even though she knew without it her life expectancy would be extremely shortened. I believe people need to make their own decisions based on multiple factors, so I encourage her to make the appointment with the nurse practitioner to get more information. Aunt Mary is a devout woman of faith, so in addition I suggested she talk with her priest and her two adult sons. .
Aunt Mary told me during the visit with the nurse practitioner, the nurse gave her a lot of information both verbally and in writing. Then Aunt Mary told me the nurse practitioner told her if she herself ever had to be on dialysis or have chemotherapy she would never do it. My aunt said, "I haven’t forgotten that conversation, it’s just stuck in my mind.”
A few weeks later, Aunt Mary relayed a conversation she had had with her nephrologist, telling me she had discussed with him her thoughts and feelings about perhaps declining dialysis. She said he told her, "You do not want to die that way. If you do not have dialysis, you will suffer terribly, have a lot of pain and eventually be in a coma." She was of course distraught and frightened as she told me all of this, who wouldn't be?
The hospice nurse in me took over as I tried to protect her from such unnecessary fright. I told her, " I am so sorry! I want to apologize to you on behalf of both the nurse practitioner and your nephrologist." I knew that nurse practitioner from the early years of my career, and I told my aunt I was pretty sure she had never been faced with making a decision for herself about dialysis or chemotherapy. I also told her I was pretty sure the nephrologist had not sat at the bedside of one of his dying patients recently.
I reminded my aunt proceeding or not with dialysis was her choice. I also knew she still needed more information before making her final choice. Regardless, I told her I would stand with her and support her choice no matter which one she chose.
My aunt did choose to start dialysis. Prior to beginning, she was hospitalized and dialysis was started due to fluid overload of her heart and lungs and the kidneys inability to remove the excess fluids. When she came home, I moved into her home to help care for her. She never “settled” into her new life dependent on dialysis. She experienced many complications. Her health care was fragmented to say the least. The nephrologist, her primary care physician, and a home care agency bounced the responsibility of her care between them like they were playing ping-pong. Eventually, she was hospitalized for another issue, and again faced a life threatening decision. This time, she chose to not pursue further treatment.
My aunt never came home again from the hospital. One of her sons told me later after her death, “She really pissed some physicians off with her decision.” However, My beloved aunt made her transition to eternal life on her terms, peacefully, and with her family at her bedside
Lesson learned: My role is to support the dying person without judgment, so they may eternally sing, “I did it my way!”