When there's no place to go

A few weeks ago, I wrote a little about hospitals "dumping" patients. At least around here, it's a rare problem. But what about people who don't get dumped but have no place to go?

Let's take "Mrs. Anton". She's 68 years old and has metastatic breast cancer. She's going to die of the disease, but probably not this week or next. She is admitted to the hospital for a fall, but nothing is broken and there's no reason to keep her. Her husband has been caring for her, but he's a little guy and can't handle the day-to-day care which includes cleaning her, changing her diaper (she can't get to the bathroom quickly enough most of the time), and turning her in bed so that she doesn't develop painful bed sores.

She would like to go to hospice, but in the real world there is no magic "hospice" where everything is free. As a Medicare patient without long-term care insurance, she will have to pay several hundred dollars a day for lodging in a nursing home, and Medicare will pick up the bill for various hospice-related services. She doesn't have that kind of money. She also can't afford to hire help around the home. If we want to commit something akin to fraud, we can send her for "rehabilitation", and Medicare will pick up the bill for a few weeks, but if she doesn't die in that time, we're back to square one.

Our system makes no provision for this. That's a problem. We are all going to die, and hopefully it will be relatively painless, but our society is not set up for that. We don't live with large extended families, and we have no way of helping older people at the end of their lives pay for the care they need.

I know plenty of people who would say, "So what? They should have planned better. It costs a ton of money, and why should I have to pay for it?"

The answer is threefold:

We all should pay for it because we already do, in various hidden fees and taxes. We should pay for it because we will all need it at some point. And we should pay for it because it is obscenely immoral to let our old folks die with such painful anxiety.

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She would like to go to hospice, but in the real world there is no magic "hospice" where everything is free.

I sure do hate socialized medicine.

When my dad's cancer came back, the hospital kept him (at no cost to him) until a chronic-care bed opened in the hospital wing. Chronic care costs money, but if you don't have the official fee the hospital will accept your pension cheque and make up the rest. But that's in Canada.

This just in: Scientific American reports that a study in the
American Journal of Public Health found almost 45,000 Americans die every year from lack of health insurance. You have a 40% greater chance of dying each year if you don't have health insurance. That's up from previous studies, which used older data and said 25% greater.

Even after controlling for age, gender, race, income, education, employment, smoking, alcohol use, assessed health and BMI, the researchers found "lack of health insurance significantly increased the risk of mortality."

I hope the coming health reform addresses the issue of hospice for those who need it.

That said, my plan, assuming I retain the mental and physical competence to do so, is to put a pistol to my head before a final stay in nursing home or hospice. I sympathize with Hunter Thompson. That's not to say it's the right or best, except that it is what is right for some.

And people wonder why end-of-life care is so expensive in the USA.

Here's a clue: if Medicare doesn't pay to do it the humane and economical way, Medicare will pay to do it, sort of, the awful and expensive one.

By D. C. Sessions (not verified) on 19 Oct 2009 #permalink

One of the things that terrifies me as my parents and in-laws get older is just this sort of prospect. I've got two kids and I'm going to end up being the person taking care of my parents and my in-laws. (There are a bunch of other kids, but...I'm local and I'm the work-at-home mom.) And there's no way any human can do that! So what if we can't afford the help I need?

I hate our system so very much.

In civilised countries with universal coverage this simply doesn't happen.

Earlier this year my sister-in-law was diagnosed with brain cancer. As she steadily went downhill, first a special bed, supplies, and nursing staff were sent to her home. As she got worse, she was moved to hospice, where she died a few weeks later.

The cost? Zero. Nothing. No bills. All covered by the Canadian health care service. Excellent, in-home service at all hours of the day. Support services, medication - everything.

But of course, we wouldn't want that sort of thing here, now would we?

When I was in grade school I remember a teacher being appalled at the primitiveness and inhumanity of a tribal society where old folks would wander off into the snow to die.

More recently I talked to a man confined to a wheelchair who admitted that when things get too bad he plans to 'roll out in front of a bus'.

I wonder what my old teacher would say.

The way we handle end of life care n our society is pretty shameful. I don't have much beyond that, other than my sympathies for your patient and my hope that we can bring about some type of reform to stop this from happening in the future.

There are other costs. I had my right kidney removed a few years ago due to massive infection (long story). The other kidney is fine. I had a visiting nurse for a week to change my bandages, and a partner who was able to help me get out of bed during the weeks of recovery after that. He's not in the picture anymore. I live alone. My best friend moved hundreds of miles away two weeks ago to get married. I don't have any family nearby, and though I'm trying to make friends, there aren't many people who would perform round-the-clock care of a middle-aged, introverted, geek woman on brief acquaintance.

If I lost my other kidney, if I had to travel to get dialysis, if I couldn't take care of myself at home... well, I just try not to think about it, but I would rather go on the operating table than face it. And I have insurance.

By speedwell (not verified) on 20 Oct 2009 #permalink

Rolling in front of a bus is not a good solution, since it'll ruin the life of the driver - to some extent at least. Counselling isn't free, either.

Blowing one's brains out is a mess too. Think of the poor soul who has to clean it up.

I'd go with poison, but I've been out of the lab for years, so it'll be harder to get my hands on. (But I don't expect to start dying soon. And we have socialised healthcare and care for the elderly here. Not sure how one gets into hospices, though.)

there is something wrong if more people die per year from lack of healthcare (45,000) than die from the flu (~36,000).

too bad there isn't some sort of system--say a national healthcare system--that america could put into place that would see to the healthcare needs of all americans.

meh. what is the likelyhood of that if we can't even get people to fucking vaccinate?

Blowing one's brains out is a mess too.

Not if you choose the right ammunition and gun and projectile pathway. Hunter S Thompson is actually a good example of how to do it cleanly. (Not recommending it, just saying it doesn't always involve blood and gore covering the walls behind you, for some poor sod to clean up.)

I decided a long time ago that, if I had any choice in the matter, then I would not linger on past the point where life had become mere existence. Seen too many people die badly to believe in the 'nobility' of suffering, especially when you are clearly near the end anyway. There are a number of effective and relatively clean ways to end it all peacefully, and with some dignity.

By Throwaway Name (not verified) on 20 Oct 2009 #permalink

Even with fully socialized medical care for everyone, there will be stories of those who have fallen between the cracks... because there will always be cracks.

For those on Medicare, hospice is not difficult to get. For those not on Medicare, it often is. Yet... hospice is - as I understand it - for those on a downhill track who will die no matter what.

The problem is those who are in no danger of death... but who cannot take care of themselves. Our country is not without resources for these people. There is SSI, SSDI, and Medicaid to mention only the public resources.

The problem is in defining the limits of those who cannot care for themselves, those who don't, and those who won't. Personally, I think there is a tremendous overlap in these categories. Some of those who appear on the surface as not doing or willing are quite incapable of doing or willing. This is a difficult line to define.

Regulations -- whether government or insurance -- cannot discern the difference of those who can and won't and those who would but can't... because they all look alike from a bureaucratic standpoint.

@ Donna B. Sure, but that's not relevant to today's discussion.

Don't get the picture that all is roses here in Canada either. Hospice care is available to all, but there is a wait time, which means sometimes dragging families to decide that somethng needs doing before they're really ready. It's a painful decision, and many families can't bear to say, "I can see a day when I will be not capable of giving this care anymore" before it actually happens.

Then you get into caregiver burnout, hospital admission, and crisis hospice placements, which are the earliest available space within 150 km (100 miles). Less than ideal.

I suppose, though, that we are lucky. It's a safety net not available to many of you.