Palliative Care

I listen to NPR at work, and today I heard Terry Gross interview a palliative care doctor about finding a humane approach to death. It got me thinking about the way my father was treated in the six months between when he went into the hospital and when he passed away in a nursing home.

We encountered so many doctors whose first (and often only) approach to any issue was to throw medication at it, or force a change of behavior regardless of the bigger picture of his health and well-being as a whole. For example, Dad had never been good at chewing his food, and had a little choking fit at least once per meal for his entire life. The moment the nurses noticed this, they called in the Speech Pathologists (who are essentially in charge of anything to do with the throat), and the SPs bustled about trying to fix the problem. They ran tests (at one point they were having Dad do "barium swallows" once a week -- because making a profoundly unwell 75-year-old man choke down liquid chalk while being live-action x-rayed is a fantastic idea), they tried some medications (I can't for the life of me remember what, because he was on so many at that point), and they restricted his diet to pureed foods.

That last part was the biggest problem for me, having to watch but not having the authority to countermand the order (my sister was Primary Medical Proxy). Dad was a foodie, he loved to eat, and if you thought hospital food was unimpressive to begin with, imagine it turned into mush. Drinkable chicken parm or lasagne, baby-food-style peas or asparagus, it was all just awful. So Dad stopped eating, and I don't blame him.

But that triggered more problems. One of the underlying issues that complicated everything but wasn't diagnosed until right before he was switched to palliative care was an auto-immune disease that made the rest of the body see Dad's liver as an infection. It's what made it possible for him to get the fungal infection of the cerebro-spinal fluid that contributed to his death. Unfortunately, it also made the effects of the heavy-duty antibiotics and anti-fungal drugs more harmful than helpful.

The liver processes blood (and medications) coming through the digestive tract, and an impairment of its function is amplified by reducing the amount of food intake. So when Dad stopped eating, his already-impaired liver had nothing with which to dilute the heavy doses of meds that were being pumped into his system. Lab results that were already a bit off got significantly worse, and the decision was made to put in a feeding tube. He was retaining a lot of liquid in his belly, which took an abdominal feeding tube off the table, so it had to be a nasal-gastric (Dobhoff) tube.

Dad pulled out six of those darned things. They were painful to put in, uncomfortable to have in, and he hated the very idea of being fed that way, but the Speech Pathologists insisted that it was the only way to get food into him. It seemed, to them, a better option than letting him eat (and choke a little) as he normally did, with the risk that he might aspirate food into his lungs and develop pneumonia. On the one hand, I get it, but on the other, they weren't seeing the big picture in the same way I was. Their priority was liability and avoiding complications, where mine was making Dad comfortable to give him the best chance of recovery.

By the time the liver issue was finally diagnosed, it was too late. The medication to treat the primary issue had exacerbated the secondary issue past the point of repair. The decision was made to switch Dad to palliative care and move him to a nursing home a mile from where we lived. At that point, I was finally able to let Dad eat real food, although it had to be in very small amounts because his stomach had shrunk so much and his body was shutting down. He took such joy in those few bites of pepperoni pizza or teriyaki chicken, in listening to the menu options I gave him (because I was going out to get whatever food he wanted rather than forcing him to have the bland, mass-produced nursing home food) and choosing which one he wanted most... in that last month I was able to rekindle his love of food, and as heartbreaking as so many parts of that experience were, I'm thankful I was able to do that small thing for him.

I can't help but wonder, though, if things might've gone differently if my sister and I had vetoed the SP's orders. I don't know if it would've saved or extended his life, but I know it would've improved the quality of his life dramatically. That's the thing that so many doctors don't take into consideration... length of life is meaningless without quality of life, and quality of life isn't necessarily achieved through medical intervention. Sometimes just leaving something alone, accepting that it's fine as it is, can make a bad situation markedly better.

I'm going back to Florida to see my grandparents in a few weeks (this time with my sister), and the issue of palliative care is present there, too. Grandpa (who's 95 years old) told me several times on my last visit, "I've lived too long. I've had enough." He's not depressed, he's not regretful, he's just reached the end of his journey. But his doctors keep throwing more medication at each little thing that comes up, from his blood pressure to his macular degeneration, and it seems so absurd to be trying to fix things and keep his life going when all he wants is a quick, peaceful death. He has an advance directive (DNR), but Grandma worries that if something happens (like another fall/stroke) and she has to call the paramedics, the paperwork will get lost in the shuffle and he'll be intubated or resuscitated before she can say anything.

This focus in medical practice of prolonging life rather than enriching it needs to change. Death is a natural part of the life cycle, and doctors need to stop thinking that their sole goal is to cheat death. It's bad for us as individuals, it's bad for us as a society, and it's bad for the planet.