The Situation
It is amazing to me how very difficult it was to get a handle on the whole picture of my mother's health. I had to pour through months and years of visit notes--visits to hospital, to specialists, to multiple primary care docs. I was able to do most of it in the medical record app, MyChart, can't imagine what it would have been like without that. But the difficulty of getting a cohesive picture is really a reflection of how broken our system is--or rather, how the shape of the system is totally determined by a completely messed up private insurance system.
When doctors or clinics or hospitals bill, everything they are treating has to have a billing code, and the insurance companies scrutinize the code and spend a huge amount of resources chiseling down the fee for that item, including disputing any time or expense that they deem superflous to that item. When I had knee surgery and was put on a machine to bend my knee, which is totally standard, it took me ages and a lot of digging in to get the insurance company to pay, because someone decided--after years of paying for that kind of thing--that this form of treatment was somehow "experimental."
So every every doctor, every medical care provider, who deals with a patient, is channeled into focusing on the single issue that they can definitely bill for, because they are also totally squeezed and have to spend absurdly brief amounts of time with the patient in order to have the cost to their employers not exceed the amount the insurance company will pay. Nevermind that the cost to the employers also including the time of all the people who have to deal with the dark arts of billing and haggling and pushback on insurance companies to get paid.
So dig and dig, through records, to piece together the picture. It's not pretty, but it is pretty standard, I guess, for a person who has lived until 92.
- Dementia
- Chronic Kidney Disease, Stage III (any worse, and she would need dialysis to stay alive)
- Enlarged Heart and (she has no fewer than 7 stents after a heart attack in 2006)
- Massive Hiatal Hernia
- Prolapsed lungs-left is worse than the right, this seems to be due to the hiatal hernia.
- Pre-diabetes
- Colon Cancer--in remission, but the colonectomy in 2012 leaves her with much less intestine to absorb fluids and nutrients.
- Arthritis in hands and knees
- Peripheral neuropathy
There is no insurance billing code for "old." Just all these separate individual problems that are to be solved--and billed for.
That systemic issue is widely recognized, and beuatifully articulated by Atul Gawande in his book, Being Mortal. My copy is heavily underlined and dogeared. Along with the system, he talks about the paucity of trianing for doctors to engage in conversations about death with their patients and families, or to recognize when care isn't about "curing" but about quality of life on the way to death.
I found, for example, that in my mother's release from the hospital with her hiatal hernia, the was dropped in the handoff from the hospitalist to the palliative care outpatient unit, and was given no pain medicine. Hiatal hernia pain is notoriously difficult to control, and I was calling the hospitalist, the palliative care people, the gerontologist, and her primary care doc, to try to get a pain plan in place. Her primary care doc was a total shit. I had sent a message in MyChart telling him about the shift to palliative care a week prior, and then asked in MyChart about help with a pain control plan. He wrote up a haughty and condemnatory note and further, had a nurse call and read it to me as if I was a child. It concluded with his refusal to "provide my patient with opiates that would only hasten her death." I fired him immediately.
Yet in a different encounter I think I was pushing too far, myself. We went to see her cardiologist for what I am pretty sure is the last doctor's visit she will ever have. I prepped the doctor: I laid out this list, asked him if I was correct or missed anything, and asked him to speak with her about shifting off the heart meds regulating her arrythmia, keeping her heart beat going when it is clearly trying to stop, and thinning her blood. I had what I see now as an inappropriate impulse to want him to have a "doctor-to-doctor" conversation with my mother. To level with her. To help her move beyond her denial of death: "I like going to the hospital, I have some very good friends there!" or "I'm not afraid to die. . . I just don't want to die now!" (all said with a bright tone and a saucy wink). To help her pull away from the various meds that were in place to stave off a cardiac event but also caused her dizziness and increased confusion, and horrible bruising that sometimes made her think that someone had been abusive to her. To be REAL, and sit with her in a place that I can't, because she can't bear to be honest with me, or herself, and that makes me so sad.
Not a bit of it. He came in with a bounce in his step, a merry flourish, joked a bit, and told her that she was just doing so gosh darned well that she didn't need to be on those meds anymore, isn't that great? And off he went like a rabbit through a hedge, leaving me with my mouth hanging open.
I fumed about it for days, frustrated that every doctor seemed perfectly unwilling to have the challenging conversations with her. And then my frustration ebbed away. My main goal, to get her off the heart meds, was met. My underlying need--to have her concede her reality to what I think is best--was not. And it never will be.
Why on earth would that doctor want to have that kind of conversation with a person suffering from dementia, a person who might be really horribly upset, only to forget and be upset on hearing the same thing again later? A person who isn't capable of making any choices for her own care or even retaining the information about it. A person who desperately, desperately, fears death.
I wouldn't wish a death from dementia on anyone--to me it seems far better to have a heart attack than grind it out as your brain gradually, excruciatingly, ceases to function.
But I also have a painful and complicated relationship in which my mother's narratives about reality are so hurtful, so massively damaging to me and to people I love. I have done loads of work in therapy and in sobriety, yet I still occasionally find myself hooked by a compulsive urge to get her to "see reality." Which turns out to mean "see it MY way." But of course, even if she ever could have, its especially impossible now with her dementia. And if she did, even for a moment, it wouldn't change anything in the past, and she couldn't hold on to it, so really, what is the point of hoping for that?
So I am not rankling at the doctor who was acting with skillful means, achieving a worthwhile goal without upsetting a fragile and fearful patient. I can laugh at my own fragility. And I can do what my mother cannot: I can accept the situation.