When Can We Stop?

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My lovely 70-year-old cousin has severe rheumatoid arthritis. She’s in constant pain and is in a nursing home. Her husband is in a different nursing home, so they never see each other.

Recently she developed kidney failure. The doctors want to put her on dialysis. They say without it, she’ll die.

What is wrong with this picture? Why should it be normal practice to keep people alive at any cost, no matter how much they are suffering? When do we get to stop?

If you’ve been following the health-care reform debate, you know that fear of “rationing” has become a major attack point against any publicly run plan. Well, if “rationing” means avoiding the extension of misery when there is little or no hope of improvement, I’m all for it. Technological medicine has the power to keep almost everyone alive. Barely alive, but with a heartbeat and some brain waves, while medical bills mount into the millions and families grieve endlessly, watching their loved ones sink.

Besides enriching the medical system, what is the point? Should we all live forever? Should we all be like Terri Schiavo, and have to get a court order to die?

The infuriating thing about the right-wing charges of “rationing” is that the current system rations care every hour of every day. They ration in the cruelest and least effective way, by ability to pay. Everything from vaccinations to checkups to medicines to surgery is rationed in the current system, but when government thinks of limiting heart surgery for people over 80, say, or encourages people to write living wills, we hear screaming about “euthanasia” and “killing grandma.”

And not just from the right. I raised some of these arguments on a Web site I visit for public health people who are also social justice activists. My views were sharply attacked. Some said I was discriminating against the old and the disabled by wanting to deny them care. They asked why shouldn’t a 70-year-old quadriplegic receive coronary artery bypass surgery if he needs it? Who’s to say that his quality of life is lower than that of a 32-year-old able-bodied person?

I thought, you should try being quadriplegic for a while. Or being the spouse or close family member of an aging, severely disabled person. You might learn that living on is not always the best solution. Not that you would necessarily want to die (although you might), but that you might not want invasive, expensive, painful treatment to help you keep going.

I am not that disabled or that old, but I’m getting there. I have friends in the multiple sclerosis community who are there already. I wouldn’t allow a technological, invasive procedure of questionable worth — and they’re all of questionable worth — to “save my life.” Some of my friends might. That doesn’t mean I want to die — I love my life. But when you need extensive medical care and continuous personal support to keep going, you have to consider whether it’s worth it. It shouldn’t be automatic that you’ll bear any burden and pay any price to extend life.

We absolutely need a national health plan like Medicare for all to stop the cruel and counterproductive rationing by poverty. (Not these lame hybrid plans that Congress and Obama keep running out — a real single-payer plan.) But if we don’t find some other way of limiting medicine’s boundless appetite for treatment, we’ll cruelly extend suffering and bankrupt ourselves in the process.

When I was a hospital nurse in the 80’s, we had a patient named Laverne who was 85 and who’d had multiple strokes. Her arms and legs were completely contracted (permanently bent.) She couldn’t move anything. She couldn’t talk. As I recall, she could bite, though.

Laverne was in the hospital for huge, infected bedsores on her hips and back. Doctors gave her the latest antibiotics. She was on a high-tech air bed that minimized pressure on her skin. She had IVs and a feeding tube; she had dressing care for hours each shift. It wasn’t quite intensive care level treatment, but it was close. No one ever came to visit her. She snarled at us when we tried to help.

After four weeks of this, a nursing supervisor came up one night and said, “I have terrible news about Laverne.” We asked what could possibly be worse than what was already happening to her. The supervisor, who I’m not sure had ever actually laid eyes on Laverne, said, “We’ve lost her.”

He went on to tell us that they had found Serratia, a nasty bacteria, in her wounds, and that there was no treatment. (As if the bacteria hadn’t been there all along.) Within 24 hours, her special bed was removed, her dressing care was cut back to once a day, and her IVs were stopped. The intern wrote a Do Not Resuscitate order.

One of the nurses had looked at Laverne’s chart, specifically the payer information in the front, which nurses rarely look at. You know what she found? Laverne’s insurance had run out. That’s why they stopped treatment. They finally let her die; after they had extracted every dollar they could get from her long-suffering body.

Nobody will ever convince me that we don’t need limits on medicine. If we don’t want mandatory rationing, we have to start being rational about what’s worth doing and what is not. Of course, people can disagree on costs, benefits, and risks. But the current default position of “treat until the money runs out or the brain quits” has to stop.

We should all make sure we have our living wills in order in our medical charts. Pick someone to give durable power of attorney for your medical decisions, and make sure you can trust them to follow your wishes when doctors are pushing unwanted treatment. You can read about how to use living wills and powers of attorney here.

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