Wednesday, October 15, 2014

Choice

I recently wrote a post about the interventions that should or should not be done on elderly people. One complaint a lot of people had is that they didn't want the decision to be taken out of the hands of the patient or the family. I would like to share a personal story about why I think it should.

When my favorite grandmother turned 80, she started to develop dementia. It happened very quickly. In a matter of months, she went from the woman who used to make me all my favorite foods and discuss books with me to having weird delusions and hallucinations. She was not pleasantly demented. She became very confused, agitated, and emotionally labile.

Eventually, my mother had to put her in a nursing home because she could not be left alone anymore. She didn't receive horrible treatment, but she never seemed very happy, which was probably due to the many small infarcts that caused her dementia. Every time I talked to her she would start crying.

About four years later, she suffered a massive hemorrhagic stroke. The doctor told my mother that on the scan of her brain, "there was more blood than brain."

For reasons beyond my control, she had been made full code. The doctors told my mother and my uncle that there was essentially a zero chance of any sort of meaningful recovery. But because they had the option, she had a craniotomy to remove some of the blood from her brain followed by a tracheostomy and feeding tube placement.

She never again regained consciousness and died on a ventilator a few months later.

My mother knew that there was no chance of her recovery. The doctor knew it, I knew it, everyone knew it. But because she was given the option to keep her mother alive, she felt she had to do it. I couldn't talk her out of it.

Meanwhile, I feel like my grandmother was robbed of the dignity of a quick death from a stroke.

Why are people given a choice of a procedure that has essentially no chance of working? At least in her case she was unconscious through the whole thing, but plenty of people spend the rest of their short life in agony due to treatments they never should have been offered.

Some people may say it's heartless, but I think sometimes the most humane thing is taking away that choice. Of course, nobody likes feeling that their choices have been taken away. So I propose a system where the patient can choose to act in their own best interest:

I think when people get to a certain age (75?), they should be offered an option for a quality-of-life based healthcare insurance. The insurance would not pay for an ICU stay, being intubated, CPR, major surgeries that are high-risk and expensive, cancer treatments that are not palliative… You get the idea. Instead, the insurance would provide services that would improve quality-of-life, such as extended hospice services or nursing services to come to the patient's home (this exists now, but isnt good enough yet to keep many people out of nursing homes). Considering how much money is spent (wasted) on extending the life of elderly people for short periods of time, I think the insurance companies would jump at the chance to do this. Plus it would keep people out of nursing homes, which I genuinely think most elderly people fear even more than death.

Then when it comes to those risky procedures, that choice is gone, and you were able to use your health insurance for things that actually made your life better.


41 comments:

  1. 1) I still don't think there should be an age cutoff, 2) You could solve a lot of this by instituting a default option = DNR for patients over a certain age rather than have the default option be "full code. It seemed like a great deal of the issue above was how the choices were presented to your mom.

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  2. I agree with you, Fizzy, and disagree with the anon above. Doctors are currently obligated to offer all potential medical options, including unneccessary ones that extend quantity of life over quality, including unrealistic ones that have offer no reasonable chance of success.

    By using this policy, we are confronting family members when they are in the early stages of grieving, when they are experiencing shock and denial, pain and guilt, and may be driven to anger and bargaining. How can we ask them to make an informed decision, with rational weight distributed to each option?

    How many families make irrational, emotional choices, and regret their choices later?

    Presenting those options to a family member often leaves them with no choice at all when it comes down to it, the doctor is saying "we can do this or your family member will die". Choosing not to proceed often feels like killing your grandmother, even if rationally you know she has already passed, only her body remains.

    Even having a good lawyer do up documentation with your preferences clearly written out means nothing when the doctors are obligated to offer procedures to your grieving daughter who can't believe you suffered a stroke, you just had dinner together yesterday.

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  3. Jack LaLanne died at 96. He would be the exception to the age 75 rule. https://en.wikipedia.org/wiki/Jack_LaLanne
    Jack LaLanne

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  4. First, your example of your grandmother is an extreme one. Many are not so straightforward. Also, your grandmother did not make any decisions; a relative made them on her behalf. I would bet that the decision a patient would make is frequently much different from the decision a relative would make.

    Second, the last people we need making those kinds of decisions are insurance companies (which, if left to their own devices, would cover NOTHING) or doctors (who too often treat only the patient's age and who are by training and inclination dispassionate and too inclined to think in terms of probabilities or statistics, often ignoring relevant details about the patient). Probably, too, we don't want relatives making the decision because their emotions are too invested in keeping the LO alive at all costs.

    I'm not sure whom that leaves except the patient. We want only the patient to make such decisions but we're left in the muck if the patient can't. Maybe a death panel by a better name, consisting of reps from the insurance companies, medicine, civilians with similar experiences, and one or more relatives is a good alternative. Tedious, but it does allow for the presentation of a variety of different perspectives, which no one of the other involved parties will necessarily be capable of.

    And, third, we have a very confused attitude toward death. If you are apparently healthy but not enjoying life and would be happy to die, you'll wind up being sent to a psychiatrist because that can't be NORMAL. You are supposed to want to live no matter what, no matter how horrible living has become for you. Until, of course, you reach age 75 or get sick. Then you are supposed to gracefully accept your end, to leave scarce medical resources to a younger, more deserving person (since contributions to society are to be made strictly on the basis of age).

    Someone yesterday said this: This is the kind of discussion that can only be dispassionate if the parties are young and healthy so that age and death are a long way off.

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    1. I think elderly people ought to agree with me. I read a statistic that people spend more on healthcare in the last six months of their life than they do in the entire rest of their life. Is that really how you would want to spend the last six months of your life? I think anything that racks up that kind of hospital bill has got to be very unpleasant.

      I think my grandmother's situation was slightly extreme, but not as much as you would think. I have had so many patients who were going to embark on extensive chemotherapy for metastatic cancer when they were already elderly and pretty sick. We send nobody home with hospice no matter how advanced the cancer is. I remember one elderly woman with glioblastoma who was about to go in for treatment when she suddenly died from a pulmonary embolus, and all we could think was thank god she was spared.

      My wish is to live in my own home until the day I die, and if that means I die six months or a year sooner, so be it. I really don't believe I will change my mind when I'm old and suddenly decide I'd prefer to die in a nursing home or on a ventilator.

      Maybe the solution is to require every single person to submit an advance directive. Maybe it could be part of your tax return.

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  5. My mother is 91, no intellectual losses, but noticeably now on the downward slope of aortic stenosis and heart failure. She is doing fine in a comfortable house, no longer getting out and about without considerable help but eating good food, spending a lot of time asleep and otherwise reading newspapers and novels. I'm hoping she can stay at home with me as her support worker, and any nursing help as necessary, until she dies.

    But I'm not medically qualified, and privacy rules mean I've got limited options for learning about what might happen to her and what I should do. I can't be certain that there won't at some stage be a moment of panic, or just uncertainty, that results in an emergency call for an ambulance and death in hospital rather than at home. If she worsens and her GP is not available to come to her, can I live with myself if I don't call an ambulance?

    Anon in the UK

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    1. I think you should call an ambulance, because maybe she'll go into the hospital for a couple days get some IV Lasix and be totally fine. But if she gets so sick that she needs to be intubated and go to the ICU, that's the point at which you should draw the line.

      That's why this conversation is so controversial. People think that I'm talking about no care, but only avoiding extreme care.

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    2. It says something that it is the medical professionals who are arguing for limiting CCU level care in the elderly. We see the detriment in it. We're not just saying these things because we have a God complex.

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  6. I'm really surprised any neurosurgeon agreed to operate on your grandmother. I've seen a handful of (ischemic) strokes go to the OR, but only in the context of right-sided MCA territory infarcts in a 50-something patient. What we're really getting at is "futile" care, as it undoubtedly was in your grandmother's unfortunate case.

    Anyway, I still don't agree with any kind of age cutoff, but this is complicated by private insurance plans as you describe. I never worry about that kind of thing because I know in our public system the insurance angle never comes up. But along the same lines, I don't agree that these issues should come down to what the insurance plan will cover. Clinical decision making must be informed by the patient's best interests - how could it not be? - without regard to the question of "resources". If they're not going to benefit from that OR, don't take them.

    Is the problem that hospitals will simply authorize and arrange for any interventions so long as they can bill for it?

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    1. I have seen so many interventions done that have had little to no chance of succeeding. The best I can say is that it's been done out of desperation rather than greed.

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    2. The doctor also gains experience with the surgery. Like a prize fighter having no history of previous fight, a pilot with no hours in the air as an aircraft pilot.

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    3. I've certainly seen (and been part of) some Hail Mary ORs for ischemic bowel or perfs and such, sometimes even in older people. But I've found that most surgeons these days seem to consider *when* to operate fairly carefully. Recently I had a 77 yo guy in CVICU who'd had a complicated course post-CABG. He had been doing okay, but was set back by pneumonia, his kidneys went, and finally ended up with ischemic bowel. Surgery saw him but they didn't think an OR was in his interest (we agreed). He passed away in the ICU intubated, but his family was on board with making him comfortable and it was peaceful. He did have some invasive interventions - mechanical ventilation, dialysis - but oftentimes you need to initiate such supportive care in the acute setting when prognostication is still in question.

      If I have any point, it's simply that blanket decisions about interventions can't really work. It will always depend on the individual circumstances, but that will rely on good decision making from physicians in concert with informed patients and family members.

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  7. I believe the problem lies in the informed decision aspect. Right now a doctor has to present options, including unfavorable ones like futile care. A person with little medical background cannot understand the trauma a person in full code goes through. They don't understand that miracles don't always happen, and shouldn't be expected to have the weight of deciding to withdraw care on someone they love. By having standardized protocols based around situations like that, it removes the pressure from the choice of either letting them die, or be significantly injured.
    I also had a grandparent go through full code - for a heart attack during heart surgery in her 80s. She did recover over the course of a year, but still tells us regularly that we made the wrong call, it was too traumatic and we had better darn well let her die next time it happens.

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    1. Very true. And even though people criticize me for talking about this even though I'm not elderly, it is usually the family members that decide to go through with the interventions. When I have a code discussion with an elderly person, they are much more likely to ask to be DNR then if I have the same discussion with their family. I suspect people who have major surgery at an old age Are often pushed into it by their family. My grandmother, for example, had never been to a doctor in like 30 years before she became demented and had no choice in the matter.

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  8. I disagree with the post you made. While there may be 'obvious' cases where additional treatment will do no good or will do more than good, there are going to be other cases that are borderline, and still other cases that would be ridiculous not to treat just because of some age barrier.

    Case in point: My grandmother has lung cancer. She's above your threshold of 75, but her cancer is stage 1, on the surface of the lung, and the doctors think they can remove the lumps with minimally invasive surgery. While she's not in great health, she's certainly not at death's door either, and the surgery has a good chance of keeping her around years without a major impact on the quality of her life.

    If over-treatment of the elderly were a simple problem to solve; if the line were easy to draw and to defend, then it would have been drawn a long time ago. But it's not an easy thing to decide/defend who gets treatment and who has to be allowed to die.

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    1. You make some good points, but you have to admit that if your elderly grandmother was diagnosed with stage one lung cancer and does great after surgery and never has a problem for years, she is a rare exception. Most people who have lung cancer do very poorly and most elderly people who have long surgery do poorly. So your grandmother is an exception within an exception, and I'm not sure if it can be used to refute that most elderly people should stay away from major surgeries and cancer treatment that isn't palliative.

      Although for the record, I think under any insurance, treatment of stage one cancer should be allowed at any age.

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    2. How about another set of exceptions? I have another relative who is in her 80's, has post-polio syndrome (so can't walk, can barely hear). She's survived having her uterus removed due to uterine cancer, a major C. diff infection, and now has a pacemaker because the pacemaker cells in her heart have stopped working properly. But she's a tough bird and is still kicking. Again, by your rules, she would've been put on palliative care with no further treatment.

      My point is that there are exceptions. There are enough exceptions out there that a hard and fast set of rules isn't the answer to the problem of over-treating the sick. How many exceptions are you willing to condemn to avoid over-treating those who won't recover?

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    3. There aren't enough exceptions or our average life expectancy would go up. You are relying on adage and personal experience to make a decision. Playing the averages is the only way to do this. I have never seen anyone over the age of 75 meaningfully survive a code. And I've seen HUNDREDS, if not thousands of them. We need to come to terms with death as a culture, it is one of our only universally shared experiences, after all.

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  9. It needs to be a cultural shift, or people will keep thinking of "death panels" and doctors trying to kill grandma, rationing healthcare, etc... We need to re-introduce the idea of death as a normal part of life, rather than "failure" to be avoided at all costs, and then the conversation of "death with dignity" can be had. I kind of liked that article about the guy who wanted to die at 75. I didn't agree with all of it, but he made some good points.

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    1. And some might say my thoughts are invalid because I am young & healthy but my parents are getting pretty close to that age and I love them very much and would love for them to be around and involved in our family forever; these thoughts & decisions are moving from the abstract to reality.

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    2. Very true. Other nations aside from the United States seem to embrace this much better than we do, as usual. Services like hospice are much more readily available and utilized in places like Canada or Australia. hospice is a service meant for the last six months of life, but in this country, it is used on average for two weeks. That is crazy. wouldn't it be lovely to spend the last six months of a long life in your own home is surrounded by friends and family?

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    3. Agreed. My mother passed away at home, but it was difficult even with
      hospice providing some of the necessary care. Thankfully, my sibling
      and myself stepped in to provide the extra care that was missing.
      Unfortunately, as healthcare shifts from patient care to valued care,
      it will become more difficult to do so.

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  10. There are things worse than death. Most people don't understand this.

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  11. I've known people who were happy to be on life-prolonging treatment, and whether that's the same decision I would want for myself doesn't matter. I don't even know what I'd want to do because I've never been in a position where I had to make that kind of decision, so I can't judge. I have an idea of what I'd want to do, but I could change my mind in the moment.

    While I think people should be able to decide for themselves, I think they ought to have the choice to give up their right to choose. I can imagine feeling confusion and anxiety and regret over making a decision, and in some situations I might feel more comfortable leaving things up to a trusted medical provider.

    I knew someone who had cancer and who was in pain. He never lost decision making capacity, but he just wanted to rest and not get stressed out about his treatment. He had a power of attorney, but legally as long as he had capacity, he could not let his POA make his decisions.

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  12. Thanks for writing on this topic, Fizzy. It is important that as many people as possible think and talk about what they would and would not want done near the end of life, so that decisions are not based entirely on the pressure of the moment.
    I disagree that families make poor decisions when offered futile options, in my experience (admittedly shorter than yours) I have not seen families who were given an informed choice decide to pursue futile care. I have seen physicians do an embarrassingly poor job of explaining the alternatives. I think it is easy to underestimate the influence that a compassionate and engaged physician's recommendation has on a family or patient's decision making process. In addition, an informed choice implies at least some understanding of the consequences of choosing life prolonging treatment. If intensivists and oncologists decided to stop encouraging futile care the problems you mention would be greatly reduced, without restricting anyone's choices. The pace of cancer research would slow down a bit, but that would be a small price to pay for the great reduction in human suffering
    Phil

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    1. Agree that families often make informed choices to avoid futile care, but many others do not, even after extensive and clear discussions of risks, benefits, and alternatives. There are many reasons patients or families may choose to pursue futile care. Some folks have faith that their prayers will overcome human medical reasoning, while others hope (totally reasonably) that imperfect medical reasoning has reached the wrong conclusion for their family member. Others simply are not ready to let go of their family members.

      Hindsight is 20/20, so when a patient dies after futile treatment families very often wish they had chosen to do less.

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  13. I had a 95 year old friend , sharp as a tack, ambulatory, and a simply wonderful woman. The nurse at the senior center where she lived, kept asking me to get a DNR for her. I explained to her what is was, and told her that people would pound on her chest, possibly breaking ribs and causing pain. ( The nurse was insistent that I tell her this.) My friend said" Pound away." She wanted to live, and honestly they wanted her to die. She passed away peacefully in her sleep at age 96. She loved life and her few friends at that point and we loved her. We who are younger are not to judge just because it is easier and less expensive. Families know what their loved ones want; doctors don"t.

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    1. Then she had the fortune of dying in her sleep, not in pain and anguishing as we broke all her ribs and her sternum trying to save her in a misguided attempt at "doing the right thing." Doctors know what the patient NEEDS. To quote Morgan Freeman in Bruce Almighty: "Since when does anyone know what they want?"

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    2. "Doctors know what the patient NEEDS." Give me a break. If doctors knew what patients needed, they would be more empathic and kind in their daily interactions with them. Furthermore, they would explain procedures in detail so that patients could actually provide INFORMED consent, and they would not shy away from tough end-of-life discussions.

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    3. You think we don't do those things? Also, I would need to be a counselor on Star Trek to be empathic. I think you are thinking of empathetic, which doesn't require an extra-sensory perception.

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    4. You can use either "empathic" or "empathetic," doc.

      http://dictionary.reference.com/browse/empathic

      And yes, most of you do not do those things. Not to say every doctor is like that, but many are. Example: recent catheterization procedure. "Might nick your heart." Literally, the only possible complication disclosed to me. I knew that was bullshit but how many patients would take the doctor at his word and not ask any further questions?
      And when mom was dying of incurable cancer and was already at stage 4 when diagnosed? All we got was pushed, pushed, pushed to put her in the clinical trial du jour, which involved experimental, MAJOR surgery. 5% don't make it off the table, 15 to 20% suffer serious complications, all to buy her at most 2 more years (most patients don't even get that much additional time). Newsflash: You guys are not all martyrs. I adore a few of my specialists, who truly are good guys and have gone above and beyond for me, but do you have any idea how many frogs I had to kiss before I found them?

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    5. The problem with informed consent is that it is very difficult to explain medical procedures - or, really, the intricacies of medical decision-making - to people with no background in medicine. No matter how much time you spend explaining, the patient will still not have a meaningful understanding. It's not just a question of intelligence - I honestly have very little grasp of what my car mechanic or accountant is telling me when they try to explain things to me.

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    6. +1^. This view may offend some as most want to believe that they have enough sense to understand anything if explained well enough. But 5-60 minutes of informed consent (depending on the procedure) will never allow a layperson to understand it at the level of the doctor doing the procedure.

      We try to explain the pertinent parts in clear, understandable language, but I think if folks knew every risk many would choose not to have otherwise helpful procedures because it is hard to appropriately weigh each risk. Even if I say that the risk of a given outcome is very low, that risk often looms large in a patient's mind due to its perceived severity.

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    7. Anon 10/20 at 8:16 pm and PGYx: If you want to understand why people have a had time liking doctors, it's partly due to the fact that doctors think everyone is a moron and treat them as such.

      Half of the problem is you *think* speak in clear, understandable language. Wrong, wrong, wrong. And I am so tired of hearing the excuse that the patient will be too scared to have the procedure you are explaining to them. You have no basis for making this assertion unless you have studied this issue and have concrete proof. And even if they do decline surgery, that is their right and their choice. Stop with all the paternalism. Please.

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  14. I think CCU/ICU level care should not be an option past age 79. This does not exclude any elective surgeries or care for routine diseases, but keeps them from being intubated, getting CPR, etc. We spend 75% of health care dollars on the last two weeks of life in this country. I am FINE with that cutoff and will remain so. The layperson does not see what harm allowing families to decide this causes. In other countries, they are not given this option and I think it is a benefit to have the agony of the decision taken away from someone who often doesn't have enough info to make an informed decision (or are blinded by emotional closeness).

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  15. I made it easy. I have it in writing what is to happen and the lawyer has it. The one who executes it knows to follow it and they will.

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    1. Ideally you would carry a copy on your person or at least a summary in your wallet. The lawyer and your executor most likely will not be present in a situation where health care providers would see fit to resuscitate you.

      If I really wanted to be sure, I'd wear an engraved charm on a necklace or bracelet for EMS to find. Sounds extreme, but the decision to resuscitate occurs in a flash and in an emergency people won't know your wishes if someone who knows your wishes is not present.

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    2. Completely agree with PGYx. An advanced directive that is locked up with the lawyer or is otherwise not with you when you are brought into the ER doesn't do you any good at all.

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  17. I'm with the first Anon. There are a ton of bad apples practicing medicine who deserve to be vilified. Too bad they ruin it for the good doctors, but that's life. You guys have no problem trashing the entire legal profession based on the actions of a few bad lawyers, do you?

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  18. Amen, amen, amen!!! Along with "DNR unless otherwise specified", add in "Transplant donor unless otherwise specified" and I'm all yours!

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