Hospice Care

The longest day of this year, the Summer Solstice, was on the June 21st. That was also the day my mother passed away. No, it wasn't unexpected. She'd been sick and wheelchair-bound for over a year. She expected it; she knew what was coming and we knew it too. But still, when the death of a loved one happens, it is a sad event.

This blog entry isn't about my feelings. That's private and I'll keep it that way. Mostly. But, while she was alive, she went through a lot of doctors' offices and hospital doors. I want to write a little note about the trials and tribulations of how they dispense health-care in this country.

About three years ago, she had a fall. Since she complained about a pain in the hip, they took her to the emergency room. She walked to the ambulance. But when she got to the hospital, they kept her entirely in bed; thereafter, she was afraid to walk, thinking that she might fall again. Rather than treating the whole patient, they just gave various medications for different symptoms. There's no one person taking charge of the patient and looking at the whole picture. When we wanted to move her from the ER to a nursing home type of hospital for her to get better before going home, the discharge nurse was more interested in just filling out the paperwork (ie: how many steps in her house's front entrance, can she wear something by herself, etc ... check-boxes on the form) than to make sure her care-givers (us) got any meaningful medical advise. She was getting quite a lot of pills. Some of those had pretty nasty side effects like hallucinations. But, none of the nurses or doctors told us any of that. So, we were left trying to figure out what's going on with her head. My sisters had to camp out at her bedside in order to catch a few minutes with an attending physician in order to find out "what do the doctors think of her situation." I guess, the doctors are being pushed to provide medical care in an assembly-line fashion, they don't have much time to just talk to the patient or the patient's relatives. They don't seem to understand that talking is as much of the medical-care process as prescribing medicines. Even at the nursing home, the doctor who did the rounds was doing that as a side job (after he's done with his normal practice elsewhere in town). So, that meant he came around and spent two minutes in the room at either in the middle of the night or really early in the morning. The moral of the story is that if you are being treated at a hospital, ask questions, more questions and even more questions. You have to be your own advocate and tell them to treat you as a whole and not just treat individual symptoms in order to get you out the door. Their primary focus is to get you out as soon as possible. Curing you, unfortunately, seems to be a distant second goal.

It turned out, we later learned, that she had had a series of minor strokes that left her weak in various motor functions. And, eventually, her neck muscles stopped working and so she couldn't eat or drink, forcing her back to the ER one more time (three years later). At the ER, when it became apparent that this is the end, my father gave the directive not to artificially extend her life by hooking her up to various machines. While I understand that that was the right decision, I'm glad I or my siblings didn't have to make that call. Even after that decision had been taken, and even after the doctors had assured us that that was the correct thing to do, it was extremely difficult to sit there and not do anything. You tend to double guess yourself and ask if you are doing the right thing. This is why knowing, ahead of time, what the patient wants done at such a situation is very important.

This New Yorker article about Letting Go spells out the need to have this conversation about end of life care. And, why that conversation must take place at a time when all involved are capable of talking about it.

I'm glad I was there before she passed on. I think, she recognized me several times. At least, I'd like to think that she did.