Sep 22, 2015

Navigating the death of older relatives, II

First post on this topic here.

Writing now from Michigan. I took an overnight flight on Sunday and spent most of yesterday with my family, nuclear and extended.

I'm pretty amazed by the extent to which my priorities are dictated by my environment and the events therein. For quite a while, I have conceptually understood that the American healthcare system is fucked up. Knowing this hasn't really affected my behavior. Yes, U.S. healthcare is fucked, but aren't there bigger problems to deal with?

But now, as I watch the system apply its grinding processes to someone I love, I'm moved to write about it. This probably isn't the most impactful thing to spend time on. I could be using this time to tech up on AI in advance of the huge risk we might be hurtling towards. I could be using this time to think carefully about farm animals and how we might help them. Those topics are probably more impactful than writing about U.S. healthcare. But I don't find them motivating. So I'm not spending time on them right now.

So, U.S. healthcare is fucked up. How so?

Well, my grandfather is currently staying in a hospital. He is very weak, and last week he was placed on comfort care, meaning that the hospital will try to keep him comfortable, but will not try to prevent his death. He had contracted sepsis, a bad-news disease for older patients, so comfort care made sense.

Somewhat amazingly, after he was taken off antibiotics, my grandfather's system fought off the sepsis on its own. Yesterday, we learned that he was no longer in septic shock. This news placed us in a weird no man's land. Instead of preparing for an imminent death, we don't really know what to expect now. He will probably still die sometime soon, but "sometime soon" might be a few days or a few weeks.

The hospital does not want to keep a lingering patient in one of its beds. So, my grandpa has to be transferred somewhere. But where? Having exited septic shock, he is no longer eligible for hospice. Yet we don't expect him to recover, so home care isn't a good option. Perhaps a long-term care facility, like a nursing home, but nursing homes are expensive. My grandpa is not rich, but he has enough assets to be above the threshold for Medicaid eligibility, so some assets will have to be spent down before he is able to qualify for Medicaid coverage. However, long-term care facilities can be selective about the patients they admit, and Medicaid patients are not lucrative, so patients on Medicaid are unlikely to be accepted by high-quality facilities. So there is a riddle here – do you spend down your assets to qualify for Medicaid eligibility and apply for admittance at a lower-tier facility? Or do you take those assets and use them to pay out of pocket at nicer facility, then try to get on Medicaid once you're there?

Working with a palliative care doctor yesterday, my family devised a plan. The hospital will conduct a physical therapy evaluation on my grandpa. If he is receptive to PT and the hospital deems that he can be rehabilitated, we will transfer him to a rehab facility, which his current insurance covers so long as he can be shown to be making progress on PT (capped at 20 days, I think). This buys us enough time to figure out the next step (either applying for Medicaid or moving to a hospice, or both – I'm a little fuzzy on the details here, and I don't think anyone knows with certainty).

By this point, you might be thinking "gosh, that sounds complicated, but it doesn't seem too fucked up." So, what's wrong with this picture? Allow me to enumerate:

  1. The biggest problem with this situation is that we are planning to send a man who no one expects to recover to a rehabilitation facility. We are sending him there because it is financially expedient, because other alternatives are very expensive, not because we think it will help him. He will attempt to do physical therapy in some weird attempt to game the system, not because anyone thinks physical therapy is a useful thing for him to do.

  2. My impression is that the majority of my family's thinking and discussion during this time has been dominated by money. Family dynamics are definitely at play here, but the situation is exacerbated by the system we are operating in. The focus isn't really on my grandfather right now. The focus is on what is to be done about him. This is sad and frustrating. A more sensible system would place emphasis on the person whose life is ending, not on stratagems for underwriting his last days.

  3. During the course of his stay at the hospital, my grandpa has changed rooms three times. We have been visited by several doctors, some of whom give conflicting information. This all happened before I arrived, so I'm fuzzy on the specifics. But my family hasn't received a clear picture from the hospital, and confusing advice from medical authority figures is very unhelpful during this time.

  4. From the conversations I've heard, it seems generally accepted that long-term care facilities are motivated primarily by profit. The hospital may also be motivated primarily by profit, but if so it at least cloaks it behind a veneer of "saving lives and improving health outcomes." But the long-term facilities want to make money, that's a given, so we have to work around that.

  5. It would be probably be best for my grandfather to be moved to a hospice, where he can be comfortable and experience some institutional stability. Because he is no longer in septic shock, he is not eligible for a hospice. Ergo, no man's land.

  6. The above are all points about my grandfather's immediate situation. There is some broader point about how our healthcare system handles dying people by placing them in quiet, institutional rooms full of medical equipment. These rooms are far removed from the familiar setting of the dying person's life, and they aren't particularly comfortable. Maybe hospices are better in this regard, and I'm just being influenced by the current state of affairs. But I think I want to die at home. If there's no expectation of being saved, what's the point of all the pomp and disruption? (this reminds me of that Atul Gawande piece from a while back)

I'm going to close now. This might not have been the most illuminating post, but writing it was gently therapeutic.

[rereads: 1, edits: added section break, added point about long-term facility profit motivation, "picture" –> "situation", still embarrassed about writing posts like this, later: fixed list formatting]