When I was in seminary, I took a class on medical ethics. I loved it and said that if I was younger and was looking for a different career, I’d love to be an ethicist. Reading the case studies and applying the principles and practices was a stimulating and enjoyable exercise and I loved the challenge of seeking the best outcome for the theoretical situations we were presented with. But, that was then, and this is now.
Fast forward half a decade….now I am faced with finding my way through the labyrinth of being the sole caregiver for my aging father who is suffering multiple maladies including (but not only) congestive heart failure and Lewy Bodies Dementia with Parkinsonism. Even though the time hasn’t quite come, I am now facing the prospect of enacting his Enduring Power of Attorney and possibly his Personal Directive. His dementia is advancing and he has become more focused on his day to day comfort and losing the ability to consider the long term repercussions of the choices he is making. The question is one of how much choice should he be given?
Here is the situation: As the congestive heart failure worsens, he is retaining more and more fluid. His legs swell quite severely, his becomes short of breath and quite weak. Lasix controls the symptoms very effectively but result in some urinary urgency, which is likely worsened by chronic constipation (I’ve read that this can be a symptom of Parkinsons). Because he is finding it more and more difficult to move quickly, often he is unable to reach the bathroom and pees his pants. Of course, he is overcome with shame and distress at this. For him, the humiliation of peeing his pants at 86, takes higher precedence over the long term consequences of not taking the drug.
Adding to his shame and embarassment is the effects of the constipation that has developed over time. Although the reading I’ve done indicates that it could be a result of the Parkinsonism that goes with Lewy Bodies, so far the docs haven’t spoken about that. He has suffered from chronic constipation for years, and has been dependent on stool softeners and laxatives for as long as 15 years. (note to self: eat lots of roughage, get lots of exercise and drink lots of water). Now, he seems to be unable to move his bowels on his own and takes laxatives daily, which results in occasional explosive results. Again, he is humiliated and embarrassed by this. He blames the diuretic for all of his incontinence issues and is now refusing to take it.
The mental deterioration complicates the matter. Lewy Bodies Dementia is a type of dementia where the patients mental acuity can change from day to day, and even from hour to hour. It is quite possible to be in the midst of a conversation with Dad where he is making perfect sense, when suddenly, he’s off in a totally different direction and not making any sense at all. When this happens, he gets angry and defensive and often accuses me of intentionally trying to confuse him. He finds it difficult to make decisions especially if there are multiple concepts and ideas to deal with. Obviously, this isn’t someone who is capable of making a reasoned, well-thought out decision regarding his health.
Dad has always had a horror and fear of dementia. He has been highly critical of and sometimes even rude towards people with dementia. He seems to see it as a moral failing rather than a chemical or physical issue. I know that this attitude isn’t uncommon among people of his generation. Often when discussing or observing people with dementia, he has commented to me: “Don’t ever let me get like that.” And now, he is quickly becoming his worst fear. Although I’ve been aware of his failing mental acuity over the past 5 years, it is becoming more and more obvious to others and recently the diagnosis has been made.
The ethical question for me is one of whether or not I, or his physicians should be forcing, or tricking him into taking a drug that is causing him such humiliation and distress. Even though not taking the drug will certainly shorten his life, and may indeed cause him pain and illness from the swelling and gathering of fluid in his chest cavity, who should be making this decision? Is it his to make, is it mine, is it the doctors? What is worse for him, heart failure or dementia? Do we prolong his life only to have the dementia worsen? Do we allow him to make choices that (he believes) will solve his problem (even in the short term), even though they might shorten his life? How do we even discuss this?