Kristin Stevens writes…
What should we do for a 86 year old with mid stage ALZ with a femur neck fracture without option for repair because of critical aortic stensis, who is who unable to get out of bed, unable to toilet out of bed, who is very frustrated and confused and anxious and angry about not being able to get up, who tries over and over and over again to get up who can’t remember that he has a fracture. Efforts to redirect, to just stay present, to be with what is happening fail. Drugs loom as the “solution”…loving, skillful care partner is at bedside 24/hr. How would REAL CARE address this dilemma?
First of all we can all pause, for a moment, and feel compassion for a daughter and her father as they struggle together through difficult and unfamiliar terrain. The situation is painful and seems to offer no good answers.
Second, we can take refuge in the principles of person-centered care. The answer to “What should we do for a…” depends entirely on the individual in question. What does he want? What are his preferences? What are is previously expressed wishes? As you describe him, your father does not, at this time, possess decision-making capacity. That is he does not seem capable of weighing the future consequences of different courses of action and choosing among them. Has he named a proxy? Is there conflict between the sibling? If he cannot choose for himself, is there a person who can choose for him?
Third, we can integrate professional medical insights into the picture. Is the fracture displaced? Are the fragments aligned? Is there an option for stabilizing the fracture that does not include general anesthesia? What will happen if he bears weight on the fracture? (one possible answer is “nothing”) Is there an orthopedist who will operate despite the heart defect? Everyone involved should understand that confining such a man to bed for the indefinite future will likely prove to be just a lethal as major surgery. What is the full range of choices?
Fourth, how can we reduce suffering for both the family and the elder? In addition to seeking answers to the questions listed above I would add the following thoughts. Pain control is vital but high doses of medication can also diminish cognition in people living with dementia. Finding a good balance will take skilled care. People who don’t remember that they have as fracture may not be feeling much pain from it. This may allow for greater mobility than you currently suppose is possible.
In sum, the hard truth is a a 86 year-old man with critical aortic stenosis with a femoral neck fracture can be said to have suffered a life-limiting injury. His time is precious and we can and should help him spend that time the way he wants to– even if doing so may worsen the fracture. That sounds strange because we are so accustomed to “curing” bone breaks. In this case, it is quality of life that matters most. Pain control and freedom of movement, rather than a cure, seem to be the highest virtues here.
I’d also like to hear Al Power’s thoughts on this.