Watch any medical drama (of which there are many–and I admit I’m a sucker for them) and you will doubtless come upon the one where the next of kin struggles to make a decision for the patient who cannot speak for their/him/herself. Should the patient be resucitated? Given a potentially lifesaving treatment despite their prior expressed disinterest in said treatment? Should the patient be taken off life support? High stakes, high drama.
But sometimes the stakes are high but the drama is a little less so.
About fifteen years ago my aunt made me her medical power of attorney. At that time she was a spry young thing of 85, still traveling with her husband, meeting weekly with her French conversation group, cooking in her beautiful small kitchen, reading voraciously, holding ferocious opinions about the world and politics (she would not have been pleased with the outcome of the most recent election). So when she asked, I said “of course.” My brother and I are her closest living relatives, I live nearer than he does–and it’s my aunt. Of course I would do anything she asked, because I adore her.
In the abstract I knew what the job entailed (after all, I have watched a lot of medical dramas). We had a discussion about what amount of medical interference she wanted should she become incapacitated. And then we went back to talking about all the other things in the world, as we always had done.
In the 15 years since then, her husband died after a long and miserable illness, and without that tether–being the organized one who took care of him and saw that everything–appointments, home-care attendants, bills and arrangements and repairs to their home–was organized, she has drifted into dementia, a little like a boat drifting slowly out to sea. The day-to-day business and organization of her medical care is handled by a trust. My responsibility is to visit, to love her… and when the time comes, to make decisions about just how much care is enough.
Last week, just after the election, I flew down to LA for an emergency visit. My aunt had a sudden cascade of health problems. Chest pains proved to be pneumonia, which was leapt on with the power of modern medicine (which is to say, antibiotics–totally permissible under the letter of the power of attorney). The next day her Nurse Practitioner got results for a blood test which said that my aunt’s potassium was low. The level wasn’t critically low yet, but decreasing potassium can be an end-of-life sign, because significantly low potassium can trigger cardiac arrest. I was told to come down from San Francisco ASAP; it was implied that I might be coming to say goodbye.
I got to LA and found my aunt awake, cheerful and chatty, but absolutely opposed to taking the potassium tonic which had been prescribed to reverse that downward trend. Over the next 24 hours I was forcibly reminded of times when I had a sick child who balked at taking medication. You can force a child to take the medicine, because it’s what has to happen–as loathsome as amoxicillin is, leaving strep to proliferate is not an option. But forcing someone to take medicine can have unfortunate side effects: I went through this with my older daughter around shots, and have had to accept that forcing her to get the shot she needed may have contributed to a long-term phobia around needles (she’s much better now, and appears to have forgiven me).
My aunt was adamant that she did not want to take the potassium tonic, which tasted almost catastrophically foul. I don’t blame her for that. But, as with a two year old, I didn’t know how to convince a woman who is cognitively diminished that she had to take the tonic or she could get sicker. She could die.
This wasn’t a Big TV Medical Drama moment where I had to decide to Turn Off Life Support. This was a small moment where I had to think about the quality of life she wanted. Did I want to get in a wrestling match or force this vile stuff down her throat (a dose every day for the foreseeable), Would she understand that I wasn’t doing this arbitrarily? My aunt may not always remember who I am to her (her memory changes from day to day) but her face lights when I show up; she knows I’m someone who loves her. I didn’t want to deprive her of a sense that she was surrounded by people she could trust.
When we talked about what she wanted, she said she didn’t want machinery deployed. She didn’t want to be kept alive but insensible. No heroic measures. Thinking about it now, I decided that heroically forcing that tonic into her was not something I was okay with. If the point was to make her last days comfortable, force-feeding was not following the letter of her wishes.
That didn’t mean I was averse to skullduggery–in this case, putting a portion of the tonic in chocolate pudding. Which, thank heaven, helped. We fed her bananas (in the normal scheme of things a fine source of potassium, but the NP had been firm that mere bananas would not be sufficient). That, and the amount of tonic we were able to get into her, seemed to do the trick. The next blood test results showed that her potassium was trending upward.
It’s two weeks later, and I’m back for another visit. My aunt appears to be in her usual state of health, recovered from the pneumonia, and able to take her meals at the dining table and watch videos of puppies, which amuse her hugely. The boat is still drifting out to sea, bit by bit. I’m relieved that the decision I made about the medication worked out right. I wonder if in some ways the Big Dramatic Decisions might not be easier, by the very nature of what they are. The small decisions can be just as fraught.
You are so right about the small decisions. I recall two from looking after my father. The first was a suggestion that my father (who also had dementia) should have a feeding tube, since the possibility that he could get pneumonia from aspirating food was fairly high. My sister and I agonized over the subject for awhile, but decided against it, mostly on the ground that he was likely to rip it out. I was quite surprised when the nurses for the memory care unit were relieved at our decision. They had similar objections, but had been instructed not to give opinions. I would have loved to have had their opinions.
The second was a recommendation from the unit psychiatrist that my father take Risperdal, a heavy duty anti-psychotic. I immediately said absolutely not, because I had covered some litigation over that drug and knew it had been heavily over-prescribed in nursing homes. But I don’t know how I would have handled that if I hadn’t known a little too much about the drug.
I still find myself questioning things I did or didn’t do for my father, but I don’t question those two decisions, at least.
My father, who had been an EMT and therefore had opinions, was adamant that he would not have a feeding tube. My brother, who knows less about these things, tried to reason with Dad (such a small thing) until Dad laid out his reasons. A feeding tube sounds like a small intervention, but it’s actually a big thing. And for people with dementia it’s a big thing that is inexplicable and uncomfortable. I think you totally made the right call.
If I were advised to give my aunt Risperadal (which, fortunately, I have not been) I would want to know why. I suspect its over-use in nursing facilities is because it makes things easier for the staff, not for the patient. I would probably have made the same call, even without your special knowledge.
I am comforted by the fact that my cousin (who is manages all my aunt’s care and is the second-in-line power of attorney for medical decisions) and I are on the same page. His wife is a NP-Anesthesiologist, and I run things by her as best I can. But we all agree that quality of life is the thing.