Complex, painful and expensive medical procedures at the end of life

It isn’t that it was a bad day, because it wasn’t really. There was too much work, yes, and I ended up staying late, but it was mostly made of good interactions and I felt generally competent. So, no, it wasn’t just a bad day. Still, this evening I feel like the best possible future would be one in which there was no technological medical care, where we just worked on sanitation, vaccinations, good nutrition, maternal health, mutual respect, stuff like that, maybe even penicillin, and called it good.

The stuff that is bothering me is use of really high end technological medicine to prolong life at its very bitter, and I do mean bitter, end. The woman found unconscious at home after not breathing for so long that her brain had died, kidneys had quit, but her heart still had the ability to pump, so she is in the intensive care unit receiving constant dialysis, on a ventilator with intravenous nutrition and scads of tests every day, all for the expected outcome of death, soon, or the less likely outcome of being able to breathe on her own so she can live in a nursing home with a feeding tube. Or the woman with cancer who has a huge ulcer on her bum, down to bone, which will take months to heal, leaving her in a nursing home and weaker than when she got it in the first place, all for the privilege of dying in pain of her incurable and progressive cancer.

Oh, and did I mention that they will start dialysis for her kidney failure so she can tolerate the surgery for her bedsore so she can heal to go to a nursing home to get a different bedsore so she can start chemo again so she can slightly delay her inevitable death of cancer? And the wraithlike man on dialysis for 11 years, only skin stretched over bone now, in constant discomfort and now failing to be able to even maintain his own blood pressure, who has clotted off all of his dialysis access so they will put a new temporary dialysis catheter in his chest tomorrow so he can live to go to a nursing home where he will lie in bed waiting for visitors or for the nurse to come give him pills and get dialysis 3 times a week until his catheter becomes infected and he is again admitted to the hospital to be saved again.

It feels like we are just playing with these peoples’ lives, giving them these ridiculously complex, painful and expensive medical procedures just because we can, not because they have value. And they are expensive, man they are expensive. Each of these will cost hundreds of thousands of dollars, if not in excess of a million dollars in some cases. If the money was nothing, well then it would be fine, or not exactly fine, but not so horrible, but the money isn’t nothing. This sort of thing is strangling our economy and having an impact on everyone’s life. Much of this expensive and inappropriate medical treatment is going to the very poor and the very uneducated, the smokers, drinkers, abused, neglected, educationally left behind, because these people are the sickest and the least likely to have had discussions with providers about what they want to get out of life and out of medical care. These people are bamboozled into thinking that what we give them, our fancy machines, our pull-you-out-of-the-mess-you’ve-gotten-yourself-into-one-more-time procedures, actually will give them something good. In fact, mostly, they just cause long term disability and dependence.

At this point the non-ranting part of me, the let’s be fair, there sometimes are good outcomes voice in my head is asking to be represented. Sometimes people are saved and they go on to get clean and participate in activities that enrich the lives of themselves and others. Cool. And also sometimes I think that for people with really rotten childhoods, an interaction with a loving and respectful medical staff is good in itself. But most of this good is achieved without our incredibly fancy and tremendously costly toys. And we are making new ones all the time, despite regulatory agencies that make it more difficult. These toys are things like newer ventilators that can force oxygenation out of lungs that are wet and squishy and over stretched, dialysis machines and heart lung bypass that can do the functions of the human body while it can’t run itself. Beds filled with air like floating on clouds, that might prevent bedsores. And potions, how we love the potions we use, so everyone gets an antibiotic, or 3, and we can support peoples’ blood pressures which means that they stay alive a little bit longer, but actually just die pretty soon anyway.

And the regular drugs we hand out like candy, blood pressure and heart pills that are incredibly powerful, but also deadly in combination with a little kidney dysfunction, a little diarrhea with dehydration and a little ibuprofen. I just today saw someone with that combo, potassium level over twice normal, would have been found dead had he not dragged himself in. Preventable. I’m not entirely sure why he wasn’t just found dead on his floor, but we will save him.

It feels like we are creating a race of zombies, walking dead who don’t know that they are dead, because we didn’t tell them. We never discussed how death is a part of life, and that we don’t get to decide whether we die or not, but we can have some input on how it looks and feels when we go. No discussion of the fact that the value of a life is not directly proportional to its length. I think these folks deserve better.

But, big caveat, I am not against all intensive care or resuscitation. But, just like not everybody needs the highest end whatever, intensive care, life sustaining therapies, resuscitation, really isn’t appropriate for everybody. Just because we have it doesn’t mean we need to use it.

Janice Boughton is a physician who blogs at Why is American health care so expensive?

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  • http://nourishourselves.blogspot.com/ Marie

    I am torn on this issue.  The man who lived for 11 years on dialysis, did he ultimately think it was worth it?  Did he get to see grandchildren born or at least get to know them somewhat?  Did he make the choice?

    On the other hand, how good are the choices made by a very sick person?  If their minds were more clear would they pick a different course of treatment?

    My 78 year old mother had congestive heart failure but sought surgery for a bad valve.  A world renowned hospital declined to consider her as a candidate.  Her local cardiologist said it would kill her.  She finally found one that would do it and she died a miserable death six weeks later.   While she was dying, she made some decisions that were totally out of character.   This ended up causing major resentments and lasting estrangements in our family, as it was divided between those who were ‘respecting’ her decisions and those of us who insisted she was not in her right mind.  So everyone suffered on some level or another because of a fruitless quest to prolong a life that was already flickering out.

    I think part of the problem is the attitude towards death in our culture.  While none of us is getting out of here alive, people cling to every last breath as though they can “beat” it.  We are not taught to accept death as a natural part of life and we are certainly not encouraged to prepare for a good death.  Until that mindset shifts, we will have people pursuing any means possible to stay alive no matter what the personal, physical and financial cost.

    • Janice Boughton

      One of the things I was realizing after writing this is that health care providers and patients and their families often think “she’s been doing so well, even though she’s ninety, she’s sharp as a tack”….so even though she has something that she is unlikely to survive with any quality of life, we should give it a chance. Then we do the surgery or the resuscitation or whatever and let her look like warmed over poo for a week or so and then we say “now it’s time to switch to comfort care.” We forget that the deaths we would want for ourselves are the ones where we go from just fine, fishing on the jetty or gardening or playing poker or laughing or eating something delicious, and then die, not stopping to experience the myriad wonders of being gruesomely ill.

  • Gene France

    My friend spent her last 18 months in the hospital with brain cancer. See lost her sight then her ability to talk, then eat and finally just lying there to die. Her two children refused to go see her for the last year, it was just too hard for them so she died alone. Please don’t let that happen to me. Just let me go. It is God’s will.

    • Anonymous

      May I suggest that you have a very frank discussion with your family while you are lucid and not in poor condition?  Put it in writing if you will.  Have a living will and designate someone who truly  understands your wishes to administrate it.

  • http://www.facebook.com/profile.php?id=100003486613764 Fred Lewis

    My grandpa suffered from Mesothelioma during the last years of his life dying at 72. The doctors said he could live 2-3 more years with treatment. He told them to fuck off. He didn’t want to put his family through the economic and emotional distress just to prolong his life on a hospital bed. I’m glad that my last memories of him are fishing on the jetty and throwing a baseball. I couldn’t imagine having to seeing him spend months upon months of slow rehabilitation for such minimal gains. While this is an ethically gray area to talk about, it is true that we waste a ton of money, equipment, supplies, personnel, and time on people who won’t real benefit from the costs associated with such care and treatment. 

  • http://www.facebook.com/people/Greg-Mercer/100001786695804 Greg Mercer

    We humans often focus on effects instead of causes: no way to make real progress.  Expensive, futile, onerous ‘care’ often provided despite or with little thought to patient or family wishes: these are all effects.  The cause?  I’d be the last to suggest there’s only one, but I offer an important one: profits.  The end of life offers tremendous opportunities for revenue, and the more one provides, the more one earns.  Even defensive medicine has the same cause: one can earn more with all those clinically pointless tests, AND avoid lost money form potential litigation and related insurance costs.  Such massive, completely legally obtained wealth cannot fail to influence clinical decision making, and patients pay the price, as do taxpayers and anyone paying for health insurance.  No other industry allows such overwhelming, pervasive, and shameless conflicts of interest, and no other industry experiences such unstoppable growth in costs, another effect partially attributable to this cause.  Until we begin to address root causes, efforts aimed solely at effects like futile care, unneeded tests, overprescription, and so on waste our time and give the mere illusion of progress.

  • lynann edelman

    OK, so here comes the soap box.  We have all had these days, the days we cant figure out why we do what we do.  Why we prolong lives that shouldnt be.  Why we put terminal patients through so much stress, anguish, pain, discomfort and distress only to tell them that we coulkdnt have saved them anyway.  Although I am one of the first people to agree with Greg that health care costs have gotten way out of control and people are just downright greedy, this is NOT the only cause of what is causing all fo this pain for our patients.  It’s lack of education and honesty on the part of the providers.  Greg, you should know this best!  Doctors do not take time to tell patients they are terminal or provide them with options.  They are not honest about outcomes, expectations and statistics.  They sugar coat and beat around the bush better than the investment baker who wants your entire life savings.  Nurses, yes we are at fault too!  We hide behind the corporate model because we are afraid to step up and do the right thing ( I can definately understand why…just look at Amanda!) and when we are given the “permission” to teach and provide care options, we often do not have the time because our patient loads do not provide us with hours needed to explain such. Once again, thank you corporate healthcare for making our “to do list” so large that we cannot spend time with the patients that is needed.  Lest not leave out the lack of desire for patients/families to WANT to know aout thier own healthcare.  They too, are to blame. How many times has a patient said ” because m doctor told me to.”  Why are we so independant with choosing what house we live in, where we work, what foods we eat, where we play, what freinds we surround ourselves with but yet we dont care about our own healthcare and we leave it up to the doctors to tell us what needs to be done.  In this age of information, shame on those who do not know WHY they take a certain medication or the implications of the same.  It is easy to blame all of our End of Life Issues on modern technology with no “compassion mode” or the greedy providers, but as you can see, it is much more complicated than that.

    • Anonymous

      I would say that “End of Life Counseling” should be provided to patients and their families so that a course can be planned while the patient is still capable of making lucid decisions.  Yes, it is a cost.  But wouldn’t it be a sound economic and compassionate thing to offer?  It could solve many ethical issues as well.

  • lynann edelman

    PS, I’ve been reading alot about a federally supported Electronic Advanced Directive tracking system and agree that it would definately be an improvement over what we have now!  How many people have an advianced directive in thier purse when they just happen to crash their car and sustain permanent brain damage?  http://www.wvpubcast.org/newsarticle.aspx?id=23486.  Of course a nationally mandated electronic health record would be the best scenario.  Imagine a world where a doctor could go online and see how many other physicians are prescribing pain meds to a certain patient, or find the results of an xray a patient had 8 years ago while on vacation to California.

  • http://twitter.com/KarenSibertMD Karen Sibert MD

    I couldn’t agree more.  As an anesthesiologist, I spend a lot of time anesthetizing patients who are nearly dead for procedures that really won’t help them.  Unfortunately, by the time I’m involved, the decisions have already been made, and it seems cruel to the family to question them.  But it doesn’t feel good to be flogging the near-dead when there are so many patients going without care.  See the column I wrote about this issue on apennedpoint.com:  http://wp.me/p2bC3h-5R

  • http://twitter.com/LHPatientAdvo Crystal Jones

    Powerful article.  Thank you for such sensible insight into this problem we seem to have of overdoing everything when it comes to healthcare at the end of life. 

  • Anonymous

    As an old Intensive Care nurse thank you.
    There needs to be a diagnosis called Dying, where we provide comfort measures
    and assist the patient and their family through the process of dying. I finally
    quit after having nightmares that my patient’s last sense was of me hurting
    them with an IV or other painful unnecessary procedure. We waste enormous sums
    of money torturing patients and their families during their last days on earth.
    We are not helping them and we are in fact playing God. I think it might just
    be time to get DNR tattooed on my chest right where the defibrillator
    pad go. I want to die anywhere except a hospital ICU or ED. 

  • http://www.facebook.com/profile.php?id=1679295136 Elizabeth A. Havey

    It feels like we are creating a race of zombies,
    walking dead who don’t know that they are dead, because we didn’t tell them. We
    never discussed how death is a part of life…we can have some input on how it
    looks and feels when we go. these folks deserve better.Great words.  Thanks so much for your incite. Beth 

     

  • RabbiAdar

    My niece introduced me to your blog, and I am so glad to have found it.  Great discussion of the end-of-life dilemmas.  I have heard some ethicists make a distinction between “prolonging life” and  ”prolonging dying” and I think it’s an important one.

    More than anything, Americans need to take responsibility by putting in place Advanced Directives for Health Care, and make sure that family members and our heath care professionals know the directive exists and what it says.  If next of kin are not happy with our wishes, those discussions should happen before there’s a crisis.  While no piece of paper can cover every eventuality, they can prevent the kinds of situations you describe, where “care” goes on and on and simply prolongs misery.

    Churches and synagogues can help by educating members and encouraging them to take the necessary steps, including education about the boundaries dictated by a belief system. Too often people think that a particular choice or lack of choice is mandated by their faith tradition, when in fact there’s a lot more nuance and room for personal choice than they realize.

    I look forward to being a regular reader.

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