Sun Tzu Should have Written Another Book

Today I got an interesting call about my dad.

He lives in a memory care facility, and he also has a hospice that sends people to look after him. The hospice has assigned a doctor to him. The hospice has also given him a social worker who looks in on him. On top of all this, he has a primary care doctor who is still seeing him occasionally and sending him to specialists.

The providers do not communicate as well as they could. The ALF people communicate very well with me, but the hospice people are doing their own thing. They change his prescriptions without telling me, for example.

The hospice social worker called me today, and she wanted to set up a meeting for the ALF staff and the hospice people, to discuss my dad’s care. She wanted to do it on a day when my dad was scheduled for a CAT scan to see if he had normal pressure hydrocephalus, and I told her about the conflict.

When she heard about the scan, she started telling me we might not be appropriate for hospice, because they did not support care intended to improve my dad’s health. They assume he’s going to die soon, so all they do is keep him clean and comfortable and manage his symptoms. Her position was that having him scanned conflicted with their mission.

My dad has dementia, but he was admitted to hospice because of congestive heart failure. If he can be treated for normal pressure hydrocephalus, there is some possibility that it might improve his mobility. For all I know, it could improve his mind. It will not fix his heart, so the notion that hydrocephalus treatment is intended to extend his life is not sound. His heart problems will still take him out before long, so he should still be appropriate for hospice. I explained that to her.

I also told her one of my problems was that I had no prognosis from anyone. No one has said, “We think your dad will be gone in x months.” Obviously, if they think he has two years, the treatment he should receive is different from what he should receive if they think he’ll die in a week. I said I needed to know what was happening in order to cooperate with her.

When I said this, I finally got some information. She said that in her experience, the way my dad’s skin is breaking down is consistent with imminent death. By “imminent,” I mean months, not days. She said it suggested his body was shutting down. She also said they had accepted my dad because they thought it was likely he would go in 6 months or less, and that was about three and a half months ago.

Now I know what the professionals think. Maybe.

It’s hard to know the truth. The problem is that professionals are biased. They make money from my dad, so of course, they have motivation to hold onto him. They can’t do that unless they defend the conclusion that he is likely to be dead soon. Also, in modern America, providers have a pro-death bias when it comes to the terminally ill.

It seems like a conflict. If they’re motivated to keep him and make money, why would they be motivated to usher him out of this life? I think the answer is partly cultural and partly mercenary. Contemporary medical culture is pro-death to a great extent, and I don’t think anyone who works for a hospice has not been exposed to that. Also, even if they will not help him stay alive longer, they know they will make more money if he stays with them than if he drops them.

A muffler shop doesn’t expect to work on your car forever, but they still want you to bring it in.

This is all guesswork based on experience and an old man’s knowledge of human nature.

If the social worker is giving it to me straight, they think my dad is going soon.

The Internet is not all that helpful. Two providers, including a close friend, have told me my dad’s skin weeping and edema are end stage problems, but it’s hard to find corroboration online. Instead, I find symptoms he doesn’t have. Fatigue. Loss of appetite. Shortness of breath. Mottled skin from lack of oxygen.

I think the social worker is right. For one thing, God seems to tell me that my dad is leaving this month. For another, he lost something like 30 pounds between December and March, while eating normally. His cardiologist said his heart problem and “comorbidities” were likely causing him to lose weight, indicating that the end is near.

You can’t lose 10 to 15 pounds per month forever. Even if I’m wrong about what God says, my dad is deteriorating very quickly. He has had a pleasant mental plateau for a couple of weeks, and that has been wonderful, but his body keeps getting worse.

What’s the real purpose of the meeting? If I were an optimist (or young and stupid) I’d say they wanted to confer and come up with a solid plan for the remainder of my dad’s decline, using input from everyone involved and treating every party with respect. Because I am old and smart, I fear the hospice people may simply be planning a smackdown session so they can assert dominance over the ALF people.

When everyone is happy and united, irksome meetings serve no purpose. The hospice must have a reason for bringing us together. With all these things in mind, I think there is a good chance someone wants to put their foot down.

Do they want to assert dominance so my dad can get the best care possible, or is it because they have been inconvenienced or overruled? My old man gut suspects the worst.

I’m happy with the hospice and the ALF. They’re not perfect, but all of our problems have been minor, at least from my perspective. As long as my dad is clean and comfortable and they treat him well, I don’t care who gets to be the top dog. If there is friction, it doesn’t appear to be causing any real problems for my dad or me.

If anyone on either side is hoping for me to side with them and make the other side submit, they will be disappointed. I’m not dumb enough to get involved in a war among a bunch of women. Women are much more quarrelsome and petty than men. Women will kill each other over a parking space.

I’m the customer. Problems are not my area. My job is to be presented with solutions.

It may well be that everyone involved is trying to do the right thing, with little self-interest. I hope so, but I’m not going to assume that.

Whatever. I’m just glad someone finally mentioned death and a time frame. After all, death is what we’re all preparing for. We can’t prepare intelligently if we never mention the problem.

I have to make sure my dad gets whatever treatment is correct, medically and morally. That’s my mission. How the providers go about making that happen is up to them.

I don’t know what the meeting will be like. They must be used to emotional people insisting that their loved ones are going to live forever. They must be used to tears and yelling. They must have seen a lot of people who knotted themselves up and refused to listen when death was mentioned. I’m not going to be a problem. I have been grieving for about three years, so it’s not like they’re going to burst my bubble and throw me into the grieving process for the first time. I am not in denial. When my dad goes, it will not be the beginning of grief. It will be the beginning of the end of grief. It will be very hard, but then the last three years have been very hard.

I’m ready for the end. I don’t want to see my dad live so long he falls completely apart. Things are bad enough already. The approach to death can be very ugly. They amputated my grandmother’s legs, and she died anyway. My hope is that he goes in his sleep, before things get really unpleasant. We are completely reconciled, and he is ready to go live with God. There isn’t much left for us to accomplish here that would justify the horrors of a grotesque and lengthy exit.