Recently, my family and the hospital care team have been guided by my father’s healthcare proxy to avoid painful, invasive, or aggressive care at time when his multiple medical issues have combined to make his health decline irreversible.
The healthcare proxy was extremely clear and enabled us to finalize the do not resuscitate and do not intubate orders. We agreed to stop monitoring and stop all medications except those needed for comfort. We agreed to stop drawing labs.
We want to ensure his comfort and avoid needlesticks/procedures that will cause him anxiety.
But there are other decisions to make.
His bone marrow has stopped producing red blood cells and his hematocrit has dropped to 22.
His heart attack caused such damage to his heart that the volume of blood per heartbeat is less than half of normal. His lungs initially filled with fluid but are now clearing.
Given his low hematocrit, do we give him blood?
Although it may enhance his overall feeling of well-being it will likely fluid overload him and make breathing more difficult.
Do we give him IV fluids?
He was fluid positive over the past 24 hours, so we have to delicately balance the notion of keeping him hydrated with fluid overloading him.
Do we consider a feeding tube?
His platelet count is 37 and bleeding caused by the trauma of inserting the tube is a risk. Feeding tubes are irritating and might require us to apply restraints.
These are difficult decisions to make as a doctor and a son. It is very challenging to be objective when the questions are about your own father.
When thinking about what provides him the most compassionate care, there is also a need to weigh the family’s beliefs about comfort with my medical experience. Feeding sounds like compassionate comfort, but the pain and anxiety caused by feeding tube insertion and maintenance may not be.
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So where are we on the journey and what decisions have we made for my father’s care?
At this time we have discontinued all tubes, all wires, all restraints – anything connected to his body except a single IV line which is used for comforting medications.
We’ve moved him to a sunny room with a wonderful view and enough space for family and friends to visit.
We’ve changed his comfort medications to a constant infusion rather than as needed dosing.
We’re giving him just enough fluids to keep him in even fluid balance.
My mother and I have divided up the 24 hour clock so that we’re with him constantly and each of us can get 4 hours per day of sleep. A rested caregiver is better able to make compassionate decisions.
I wish there was a single definition of compassion comfort care that could simply be ordered. My experience suggests that the patient’s wishes, the family’s beliefs and the care team’s advice all must be combined to arrive at an optimal answer. We’ve made stepwise decisions that were not clear or obvious at the beginning of the process.
My father is resting comfortably and I’m telling him stories from the best memories of our lives together. I know he’s listening.
John Halamka is Chief Information Officer of Beth Israel Deaconess Medical Center and blogs at Life as a Healthcare CIO.
