Advanced care planning conversations were a mystery to me and seemed clearly to be outside of my scope of practice as a nurse. I occasionally noted lack of congruence between provider notes indicating an incurable illness along with orders for full code status. I assumed expert goals of care conversations were happening during meetings between patient, family, and physician when I was not present and full code orders reflected patient wishes.
I stopped making those assumptions when I met Bill.
Bill was a kind, physically active 60 year old man diagnosed with a type of skin cancer called malignant melanoma. It had spread to his bones, including his spine causing a paralyzing effect. Neurosurgeons tried to operate but Bill wound up wheel chair bound for the rest of his life. His plan was for chemotherapy once he healed from the surgery.
Bill started to make some progress toward independence with sliding board transfers out of his bed. These efforts were exhausting for him and would result in drenching sweat and pain.
Bill’s wife of 25 years appeared anxious and rarely left his side. She tried to be a source of encouragement saying “you’re going to get stronger and walk again.” Bill quietly agreed with her attempts to remain optimistic but the look on his face indicated to both of us that he knew he would not meet that goal.
Bill’s incision became infected. Antibiotics were started and he would return to surgery to help clear the infection. His attending physician informed me Bill would not make it but that he wanted to “continue care”.
I was alone with Bill in his room and asked him how he felt about his upcoming surgery. He said “I’ve been thinking about it and have a vision of the surgeon coming into the waiting room announcing to my family that despite all efforts, I died in surgery”. I asked him if that was the kind of death he wanted and he looked at me surprised stating “No! That’s not what I want but no one asked me.”
Bill and his wife were able to discuss their wishes with the neurosurgeon when he visited that day to complete his surgical consent. Surgery was cancelled, DNR order was written and plans were made for transfer to hospice. His family, including a new grandchild he had not seen before, and friends gathered from across the country in his home to throw a party in celebration of his life while he was still alert enough to enjoy it with them. Bill died comfortably in his own home surrounded by family.
Patients may not understand they have choices for treatment. When people don’t choose to do something it doesn’t mean that they stop getting medical care. Patients and families are sensitive to the words we use and asking them if they want to “continue care” is counterproductive when we need to have clear discussions about patient goals and values in relation to their decisions.
. Learn more about the plans of care we offer here: http://www.irisplans.com/plans/