Diabetes Self-Management Blog

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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Comments
  1. Bravo!

    Thank Goodness…FINALLY a voice of reason in the darkness!

    Posted by Lorian Rivers |
  2. Of course you understand that some folks want to hang on, right? I was recently speaking with someone whose father’s insurance company said he was too old to take a certain medication for his prostate trouble, medication he had found help from for years. Now he has lots of trouble w/out the med. He wants to have a better life back but it looks like the insurance company has decided he’s too old (in his 70s) to allow that kind of expense.

    It’s all well and good to allow people to die. It’s another thing to push them along. I have siblings with progressive diseases and they are nearly helpless but neither of them wants to leave this world yet. They still find great pleasure to balance out the suffering in their days.

    When it gets to be too much suffering for me in my life, I will be glad to go, but that’s me.

    Posted by Gail P |
  3. OH David, this is brave and true writing, and from direct experience too.

    When the profiteering is removed from healthcare, we have a chance at healthy care.

    I learned from taking care of my terminally ill daughter that quality of life matters, more than prolonging it through tubes, machines, and misery. In the end, she had one bad day. I will always be grateful for all the days that led up to that one. They were full of health CARE. And the one bad day was full of gentle goodbyes.

    Keep speaking up, we need your voice.

    Posted by KarenDC |
  4. I share your frustration that “the current system rations care every hour of every day…in the cruelest and least effective way, by ability to pay.”
    It also rations things like housing in that same cruel, inefficient way. I think that both I and the wealthy man should have the exact sized large house, paid for by his increased taxes. I think the rest of the 98% that are not wealthy agree with me, which gives us a clear majority, so we should legislate against the top 2%.
    I will consider this eminently fair until the day I become wealthy.

    Posted by Israel H |
  5. Well that seems a sad reason for termination BUT there are much better cases than that one. The problem comes when the patient is so far removed from the process of decision. Government will be concerned with reducing costs while of course restricting care and the criteria will most likely not meet the needs of a patient. I find the possibility very scary that a far removed government official will make those decisions. BTW my husband’s uncle died while suffering terribly from a very treatable appendicitis in a Toronto downtown hospital..the reason…no more operating time for that doc..he was limited in what he would do. Now that should scare you!!

    Posted by Laura |
  6. Thanks for writing, Laura. You do realize, don’t you, that “far removed officials” in private insurance companies deny treatment every hour of every day. In contrast, Medicare (a government program) almost never denies coverage for treatment. Most doctors say they have never had a single incident of payment denied by Medicare.

    Also, much of my family is in Canada and gets their medical care there, and they’ve never heard of anything like your story about your husband’s uncle. That doctor would have lost his license.

    In the U.S., of course, approximately 50 people die every day from lack of care (about 18,000 per year, according to the Institute of Medicine.) Read an article about that here: http://www.usatoday.com/news/health/healthcare/2002-05-22-insurance-deaths.htm

    Posted by David Spero RN |
  7. These stories you told are certainly heartbreaking. BUT, these patients CAN refuse these treatments. You talk as if people cant say “no more” They sure as heck can. So.
    My brothers mother in law was 80 and they found a large abdominal tumor. Huge. Three surgeons wouldnt operate saying she was too old. One finally agreed to do it.This lady has lived NINE years from the surgery, still lives home alone and cares for herself, is a riot to be with. Now really, who should make the decisions???? Not the GOVERNMENT for sure.Left to them, grandma would be dead.
    I will say stop, or a family member will say stop! If there is no one and no living will then a doctor will decide. But not the govt!! Enough of the govt in my business, in my life. Grrrrrrrrr
    And Israel why should a man whi has gone to school longer than you and made a good living have to buy you a house just like his??? Are you serious??? I am not wealthy just a notch above poor.. Tough luck for us. I mean it,we dont have enough to meet our bills anymore. I do NOT expect a wealthy person to HAVE to care for me.If charity wants to help great. If not, so be it. If everyone is standing around wanting a handout there wont be any wealthy for long to hold everyone up.That is so simple, why is it the wealthy are suddenly turned on . Politics.It is easier to do that than to face the truth. We cant keep everyone happy and healthy and well cared for. Stop making kids if you cant feed them. Rich and poor. I mean lets ALL take responsibility here. Stay in school, dont do drugs….. Why are the wealthy suddenly are the criminals of the world? Go after your really wealthy sport”heroes” Better yet, your Hollywood politicians. THey pay hardly any taxes on their films etc. Hahahahahahah Craziness.

    Posted by ann arber |
  8. I think none of us can decide what quality of life another person has. Unless they’re in an irreversible coma, or mentally impaired, they should make that decision themselves.

    Perhaps someone who is in constant pain feels it’s worth it to be able to watch a grandchild grow up. Someone else wouldn’t. Some people who aren’t in constant pain don’t want to go on living, yet we force them to do so and treat attempted suicide as “a cry for help.”

    The other issue is that it’s easy to say, “Oh I wouldn’t want to live in that condition,” but we really don’t know until the time comes. I have a friend who always said she’d never want to be on a machine, when the time came she wrote to me, “I couldn’t believe how much I wanted to live,” and she went on the machine.

    I knew an elderly woman who refused open heart surgery when she was 92. “Let nature take its course,” she said. But when nature started taking its course, she refused to sign a DNR order even though her doctor said any attempts at CPR would break her ribs, and she was too frail to survive that. “If you have a chance to live, why not?” she said.

    I’d be interested in your viewpoint when you’re 85. Seventy might not seem so old then.

    Posted by Gretchen |
  9. Laura, weren’t there any other doctors in that hospital?

    Posted by linda |
  10. Laura wrote:

    “Government will be concerned with reducing costs while of course restricting care and the criteria will most likely not meet the needs of a patient. I find the possibility very scary that a far removed government official will make those decisions.”

    Laura, I’m not sure whether you think a government official making these decisions is included in proposed health care reform. I hope you realize that there is no provision in any currently-proposed U.S. health care reform package that would allow (much less require) any government official to make decisions about limiting patient care.

    The provision that conservatives objected to would not do that at all; it would simply allow for payment for a doctor or other qualified person to help people write their end-of-life wishes in a form that they could be used.

    In other words, people who are now well could be sure that they have let their health care professionals and family members know whether they want “everything done” to keep them alive or whether they want no heroic measures. And it would be done in a way that meets state legal requirements, since the exact form of the legal documents varies a bit from one state to the next.

    Providing payment for this sort of assistance makes sense to me. If payment is available, the service is more likely to be provided. Each person will be able to state what kind of care he or she actually wants near the end of life. The statement is more likely to be documented in a form that is legally valid, possibly binding. The doctor will know with some level of certainty what the person really wants.

    I believe we should absolutely NOT provide extraordinary measures for people who don’t want them. As a nurse, I have seen many situations in which this has happened, at great expense, and to the great grief of the person receiving unwanted care. It’s an unnecessary, even cruel expenditure of money.

    Posted by Beth |
  11. Medicare rations health care by having such low reimbursement rates that local doctors will not accept Medicare patients for treatment. The doctor we had seen for 12 years gave us the boot when we were forced to go on Medicare. No other general practice physician in town would accept “new” Medicare patients. My husband went to the ER and got a referral to a doctor. I went without a doctor for over five years because I had no emergency event that forced me to go to an ER. I now am seen by a nurse practitioner who can refer me to specialists if needed. If Social Security is so wonderful, if Medicare is so wonderful, and if the proposed national health care plan is so wonderful, why does Congress exempt itself? Don’t tell me about the national health plans in Sweden, Canada, Switzerland or the UK. The Swedish government which employees one third of Swedish workers spends 53% of it’s gross domestic product on government programs. Figure the tax on that. Canada’s tax system is too complicated to figure out but I talked to a widow there who has $50,000 per year income and pays 50% of it on taxes. The UK levies an 11% tax on income between $150 and $1,000, plus 1% on income over $1,000 exclusively for health care. Add to that income taxes, VAT taxes, etc. Switzerland’s tax system is too complicated to figure out but if you own it or earn it it will be taxed. The social tax (retirement and health care)averages 13.1% of salary. On top of that, you have income taxes, capital gains taxes, value added taxes. I love the innovation that comes with a free market society. I don’t want any part of a government forced option. The fed mandated that emergency rooms must treat all patients regardless of payment ability. As a result, ER costs are astronomical because hospitals pass on unpaid (and Medicare’s underpaid costs) to the rest of us. The fed gave us Medicaid. Because government pays, there is no incentive to control costs. Those of us who provide for ourselves and who have deductibles, co-pays, and limits on coverage, then pay unlimited Medicaid benefits for those who do not provide for themselves. The fed gave us flood insurance. In flood plains it’s not if a flood will destroy property but when. As a result, we have adverse selection (people only take the insurance when a flood is imminent), and we, the taxpayers, end up rebuilding over and over again buildings that should never be built where they’re built. I don’t want the people who run the Post Office to run my health care.

    Posted by Arlene |
  12. Ummm David I am so happy that your family has not had any problems. There are also some happy stories from
    Canada but as an American who married a Canadian I was shocked in my first month of marriage in
    Toronto to have the doctors on strike!! This was in 1980. My husband’s brother lived in Marathon and while there was a hospital building there was NO doctor. He visited on certain days. If you had/have a problem then you would be life flighted or drive to the next town. Not what I would want to have to do.
    There are problems but having the same people who run the Post Office run our health care is frightening….Obama even said that private companies such as FedEx or UPS are run better than the government run PO.

    Posted by Laura |
  13. The Constitution assigns certain responsibilities to the federal government. Health care is not one of those responsibilities. It seems to me that many of the people who support ObamaCare want other people to help pay for their care. Empowering the federal government to take over the health care system is the worst way to get help. As a compassionate individual, I choose to contribute to a non-profit organization that provides health care to the poor. That’s the best way to help people who need help. It would also help to repeal some of the insurance regulations and kick the lawyers out of the process. Then people could afford their own insurance.

    Posted by Donna C |
  14. Donna and some others wrote along similar lines, to quote, that “many of the people who support ObamaCare want other people to help pay for their care.”

    Yes. I don’t support “ObamaCare,” but that is what I want. What every other developed country in the world has - a aystem where people get the care they need. People should help each other - that’s the only way a society can work. This modern American dog-eat-dog market ethic leads to all of us being fed to the big dogs with all the money. Somehow, many Americans have come to feel this is normal.

    Here’s an article I endorse, even though the author is a bit more radical than I am.
    http://www.commondreams.org/view/2009/08/24-1

    Posted by David Spero RN |
  15. SPEAKING FROM A DIABETIC TII SENIOR PERSPECTIVE:

    Yes, Medicare’s UNDER-payment is absolutely astounding, and is WITHOUT DENTAL AND EYE CARE — two things most seniors need at this stage of life.

    Hospitalization can attach almost all “discretionary” funds of a fixed-income for months and months, if not an entire year.

    So in addition to our Increasing Medicare Part B contribution, we PAY for Parts A & B SUPPLEMENTAL Insurance and MEDICARE PART D Insurance — both of which will pay only IF MEDICARE APPROVES the procedure or Rx.

    Personally, in my two years of Medicare coverage, I have had PARTS A & B Supplemental Insurance, and Part D insurance PREMIUM INCREASES of (Supp Ins) $33.55 = 21.6%, and (Part D) $9+ = 19.4%

    – AND –

    Part D DEDUCTIBLE INCREASES: from $2 to $4 (100%) for Tier 1 [perhaps to “equalize” the Wal-Mart $4 Rx Plan??); from $18 to $30 (40%) for Tier 2; and from $60 to $75 (20%) for tier 3.

    All this with I believe a two-year total 7-8% Social Security “income” increase.

    Am I almost “priced out” of appropriate care?? You Bet I Am. Just like are very many, many, many, many, many others.

    So what is the answer? I don’t know. Some entity has to be making a HUGE profit, but it sure isn’t me.

    And YES, I do have a Durable Power of Attorney for my health care decisions should I be unable to say “DNR”.

    I need QUALITY more than Quantity of life, and if I cannot participate in life, I don’t need to be a dust-gathering-care-needing-curio in the room.

    Thanks for listening — I’ll relinquish the soap box now.

    Posted by Kathy |
  16. Hello, Mr. Spero, I was curious what you might know about being a recently categorized disabled person who is facing “housing issues”? I am, through my recent disability I am, likely, no longer gonna’ be able to work and will have to begin working smartly, in order to secure my future. I am curious what your knowledge is about taxable deductions and housing subsidies? I fear that in the immediate future, I will no longer be able to afford any type of housing, as I live in a high cost zone, and will be faced with many unpleasant times ahead. My Crohn’s Disease has plagued me for the last several years, until a recent diagnoses, at least gave me an answer as to the “what”. Now, I am faced with the “how”. I am a Veteran and have limited assistance from the V.A. Any and all information is greatly appreciated. Thank you and I look forward to your reply.

    Posted by Mr. Anderson |

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