People Want Control at End of Life.

Poll after poll shows Americans want the right to determine the measures taken to keep them alive.  While the percentage who say, “I approve any measure that keeps me alive” changes a bit over time, the vast majority do not want extrodinary measures.

The dark side of keeping people alive is that extrodinary measures are suspected of shorting life often.  Surgeries on very sick people can do this.

I read somewhere recently of a new model for end of life care.  It involved an advocate for the patient who would visit often about the patients short-term goals.

That is, instead of signing a sweeping declaration about extrodinary measures, the patient is asked what he/she would like to do or accomplish during there end of life period.  It might a visit with someone special or a trip to experience somthing.  The consultant then arranges with doctors in efforts to accomodate these wishes.  Decisions about the level of health care are made by the patient through the consultant rather than by doctors.

That model sounds similar to the way I understand end of life medicine is practiced at the famous Mayo Clinic in Rochester.  The clinic spends extra time (money) listening and consulting with the patient.

Patient feedback from Mayo patients and relatives is very positive.  Ironically, their costs are lower than competing clinics.

Even though forgoing some end of life care can be seen as a form of suicide, it seems to me patients should have substantial control of what happens.

http://www.huffingtonpost.com/ashley-b-carson/new-research-shows-wide-s_b_4435462.html?utm_hp_ref=religion&ir=Religion

 

Avatar of Jon Lindgren

About Jon Lindgren

I am a former President of the Red River Freethinkers in Fargo, ND, a retired NDSU economics professor and was Mayor of Fargo for 16 years. There is more about me at Wikipedia.com.
This entry was posted in Uncategorized. Bookmark the permalink.

97 Responses to People Want Control at End of Life.

  1. entech says:

    My brother in law is just entering the palliative care stage. He has discussed the matter with his doctor and was told that the doctor could not do anything to make the care stage shorter, he could however over prescribe morphine type painkillers allowing a little stockpile in case it got to be more than he could tolerate.
    An approach that should be the norm, keeping someone alive when they want to die, giving them only partially effective relief is a form of torture. Keeping some alive purely by mechanical means is playing God and is surely blasphemy on the part of the medical profession, either that or a need to prove how clever they are or how much in the way of fees they can get.

    I agree that doctors should not be required to do things against their beliefs, against what they consider to be right or wrong, whether they be personal or religious. I can see no reason why they cannot refer the patient on to someone else.

    It would be nice if the right to life people included a right to a dignified death clause in their thinking.

    • Avatar of Jon Lindgren Jon Lindgren says:

      entech 1:45 “It would be nice if the right to life people included a right to a dignified death clause in their thinking.”

      Amen to that.

    • Avatar of realist realist says:

      In Oregon, there is a “Death with Dignity” law that lets the doctor give the dying patient the drugs to take their own life under very rigorous criteria. They have to be within a certain number of weeks from death, etc. Makes a lot of sense.

    • josh says:

      Entech. Where have you been? There’s big money involved in death these days. These hospitals wouldn’t make nearly enough money if they didn’t do everything possible in order to stave of the inevitable. The family is the one that needs to step up and ask themselves “Is it worth the extra $50,000 in bills we’re going to have so that Grandpa can struggle on in misery for a few days longer?”

  2. Wanna B Sure says:

    We currently have “living wills”. There is another name for it, which I can’t remember. Both my parents had one, as do us. In it, is contained (I can’t remember the exact wording), “if death is inevitable, no unusual procedures or appliances shall be used to unnaturally extend life” or something to that effect. The main goal is to make the patient as comfortable as possible, including food and water if desired by the patient. Pain pills are included. When my dad died, he was in much pain prior a coma, but controlled, and they continued the pain meds until his death. His coma lasted for just a few hours. It wasn’t his wish to be “put down” prior to a natural death. This was 10 years ago. We have a friend right now, who’s mother is going through a similar situation. She too has a similar document. She is still conscious, but maintained comfortable without extraordinary practices. They could keep her artificially alive for a long time, but that wasn’t her wish, and her wishes too are being fulfilled.

    • Wanna B Sure says:

      My wife just told me our friend’s mother might not make it longer than tomorrow.

    • Avatar of realist realist says:

      It’s called a “health care directive”, I believe.

      • Wanna B Sure says:

        That’s it. Thanks.

      • Wanna B Sure says:

        I should add; We have these directives on file, both at the hospital and clinic, in the event of need in the future, just in case it is a catastrophic event, accident, etc.

        • Avatar of Jon Lindgren Jon Lindgren says:

          Wanna 5:38 “I should add…”

          As I understand it, you live in a smaller city and it seems likely those wishes would be noted if you were living there at the time of some accident or complication. I know of a case here in Fargo ND where a “do not recessitate” document was not known, or, was known and not followed. The person was unconcious and there were no relatives in the area.

          Emergencies pop up in far flung places and in unforseen circumstances. I wonder if there is a code or summary my wishes that could be tatooed on my body somewhere that a doctor would see and follow accordingly? I’ve never heard of this, but I wonder if it is something that is done?

    • Catholic Dad says:

      Wanna B,

      My condolences to your friends mother – during the holidays I’m sure it is even more difficult.

      The Church being pro-life answer is just give them food and water. If they need ventilator that would be extra-ordinary care. All we ask is to provide them food and water, no extra-ordinary care is needed – which would mean recitation would not be required.

      Peace

      • entech says:

        Presumably as well as food and water you would provide painkillers?
        If the pain was extreme and an attempt to alleviate the resulted in a shortening of that life, would that me all right?

        • Wanna B Sure says:

          Not speaking for CD, but I think that is a given. With my dad, the pain meds given to make him comfortable were continued at the same rate after he lost consciousness. A consideration; if the provider upped the pain meds to stop life on his own, without approval from the family would go against the spirit of “do no harm” and the health care directive. I have heard of the possibilities of this being done. Proof? I have none. I suspect this type of scenario is what you are referring to.

          • entech says:

            I have experience of this an operation, a colostomy required to prevent the possibility of septicemia which would have a been very horrific way to die. The patient was in a very weak state and never really recovered from the operation, after a few days a meeting was held between relatives and close friends who had regular visitors and the Doctors in charge, it was agreed that comfort and pain relief were the only things that could be done and that there would be morphine on demand. A push button had always been available for extra but I don’t think patient had really been aware enough to use it. The evening of the meeting death came peacefully in the sleep, the sister was at the bedside and said it was just like falling into a deeper sleep and then the breathing stopped. You would never ask and would never expect a reply but if extra morphine was given to the extent that it did shorten life all I would have to say would be thank you.

            PS. in similar circumstances I would hope that someone would have the decency to do the same for me.

    • josh says:

      Living wills aren’t worth the paper they’re printed on if the family chooses to ignore them while Grandpa is in his incoherent capacity. Sad, costly, and true.

      • Wanna B Sure says:

        I don’t think so. The patient signed the document, and it must be followed.

        • josh says:

          Family can override it.

          • Wanna B Sure says:

            Not if a family member has a POA on an individual. I have a POA on a family member. The wishes of the individual WILL be honored. This has been discussed with all members beforehand.
            Do you have documentation that a the patient’s signed documents can be overridden by consensus ? I don’t think so.

          • josh says:

            If you DO your job. Otherwise the POA can over rule the pt.’s last wishes and there’s they can do about it. In other instances no documentation is needed. All the physician has to say is “Sorry we’re not pulling the plug.”, and you’re screwed. Which happens when you get several family members to convice the MD to over ride the POA.

          • Wanna B Sure says:

            That would be a medical question, and the courts may have something else to say. It’s best to have the documentation and family discussions done beforehand. It may be a bit messy in a dysfunctional family. On the other hand, the money grubbers in such a situation would be happy to see the old geezer die so they get their inheritance. Another contributing element with dysfunction, is guilt of some kind due to unresolved disputes.

          • Wanna B Sure says:

            “If you do your job”. Is there any doubt in your suspicious little mind? If there is, you are sadly mistaken.

          • josh says:

            agreed for once.

          • josh says:

            I was talking in generalizations. Is there questioning going on in your paranoid little mind? Me thinks so.

          • Wanna B Sure says:

            Not paranoid. Have you lived long enough to see the sharp tools come out when there is money involved? I have. If you don’t have all bases covered, the opportunity is there for the greed factor to set in, and that is more likely with the dysfunctional members of the family. I’d be willing to bet yours would be a case study.

      • entech says:

        Fascinating little discussion between Wanna and Josh.
        Seems there is an inevitable conflict between the beneficiaries, The two sets of beneficiaries being the relatives who want as much as they can from the estate, and the hospital who wants as much as it can from hospitalisation.

        • Wanna B Sure says:

          Entech: Simply doing a little housekeeping. Jon has complained in the past that Christians remain silent when other Christians behave badly. That is not true, as there is dialog behind the scenes aimed at correction, but since Josh is so public here, I feel it necessary to be equally public. I would rather confront him privately, but this is not possible. Sadly, I have my doubts it would do much good anyway, as he probably not open for suggestions. The more he talks, the angrier he gets.

        • Wanna B Sure says:

          PS; I should also say I and (we) do, and have done this often in the past, and will continue to do so without Jon’s nudge or approval.

          • josh says:

            It’s not clinical as usual you’re full of shit which is fully describes your pathological condition.

          • Avatar of Jon Lindgren Jon Lindgren says:

            Wanna 2:21 “..and will continue to do so without Jon’s nudge or approval.”

            One thing about disagreements on the internet, we don’t have to duke it out physically.

            I’ve had the impression a few times (not presently) posters have written stuff here who have been drinking a little too much. I’ve been glad we were not discussing religion is a bar. :)

          • Wanna B Sure says:

            More four letter words. I rest my case.

          • josh says:

            Jon, I’d love to duke it out physically with this wanna b., little woosies like him hide behind their avatars because they don’t have the balls to say these things to a persons face.

          • Wanna B Sure says:

            Thank you Josh. You just made my point. Anger anger. tisk tisk.

          • Wanna B Sure says:

            What’s an avatar?

          • josh says:

            Sometimes settling things like a man is the best way to settle things. But you would have to be a man wanna b., which you’re not. If you had any balls you would use your real name and step up, but you don’t which proves my point in that you’re a gutless coward.

          • Wanna B Sure says:

            Have you licked a flagpole yet today? Double dog dare you.

          • Wanna B Sure says:

            Your point?

          • josh says:

            That you’re a coward for the whole world to see. You hide behind a mask don’t have the guts to stand up and say this is me. My name is ” “

          • Wanna B Sure says:

            First names only means nothing. Are you familiar with the peasant’s revolt? Planning another?

      • josh says:

        Wanna B. Is it impossible for you to make a comment without trying to insult another. You behave like a child.

  3. Avatar of realist realist says:

    When a person is unconscious, brought to the hospital after having a stroke, let’s say, it’s very difficult to undo the emergency procedures like a ventilation tube even when the person has a final directive. You can prevent the placement of a ventilator, but just try to get one removed. You almost need a court order. This is especially difficult if the person is incoherent . Rules also vary a lot in how hospitals handle visiting relatives. Some allow visitors in trauma room or ICU units and others don’t. Also many doctors are very adept at getting approvals from next of kin for all sorts of interventions because it’s almost impossible to show that a person is really dying. Whole thing is a mess. Best not to go to a hospital at all. Die at home; that’s my plan.

    • H.P.Drifter says:

      The bad medicine here in most places (personal testimony if needed) will kill you. Move to Minnesota outside the cities, you will go quick no problem. Hope it will change some day but for now your are safe.

    • josh says:

      Actually it’s not very difficult. The POA and the Physician just need to say it’s time to shut off the ventilator. The only time it gets difficult is when you have conflicting family members. If a person has a major CVA, and they can can easily show this on a CT scan or MRI, they will generally pull the plug even if the family is refusing. It is only in the extreme cases where you get family members that take more time to get a grip on reality and realize it’s time for the end. In many of those instance it’s usually the drama queens that are putting on a show. They always have to be the center of attention in an tragedy. But I digress. All hospitals allow visitors in to the ED and ICU. They cannot be refused as it is their right to be with family as long as their is a no contact allowed designation in the pt.’s demographics or the visitor is causing a problem. Hospitals actually encourage it because it increases PRC scores which means greater reimbursement for the hospital.

      • josh says:

        correction:They always have to be the center of attention even in a tragedy.
        correction: They cannot be refused as it is their right to be with family as long as their is a not a no contact allowed designation in the pt.’s demographics, the can be refused if the visitor is causing a problem.

        • Avatar of realist realist says:

          I know you are always right, but just so you know that I was denied access to a relative because the hospital had a policy of two 15 minute visits a day for ICU for a maximum of 2 people at a time. They can refuse and they did refuse, but don’t change your opinion just because of that. :)

  4. H.P.Drifter says:

    The right to die a natural death should be a given, even with a little help if necessary. I think the word Wanna be was looking for is no a resuscitation letter. Screw this keeping you alive for weeks or months on end on some ass hole machine so some mental ill relatives can “grieve” over you why you suffer in pain. Actually I am looking forward to the compost pile, eternal nothing, I am going to be pissed if there is anything more. My obligation to be here is over period. I am not going to kill myself or anything like that, the journey has been a good one had a great time, when it is time, I just want to get on my horse ride into the sunset, and over the huge cliff.

    H.P.D.

  5. H.P.Drifter says:

    With a couple of friends I have been thinking about opening a Atheist, Agnostic, and Free thinkers Cemetery, Cremation niches only. Somewhere around here in a beautiful setting. Nice Mausoleums, sitting areas, gardens, maybe even a party room. No too big , buy enough land for expansion. Nice gardens, maybe a few statues of great atheists already dead. At least then there would be a place, no way would I end up in cemetery with people, I won’t give the time of day in life and far away from the Christians as possible.

    H.D.P.

    • Wanna B Sure says:

      My plans are a short end of PVC pipe, and a post hold digger.

    • Avatar of realist realist says:

      Why niches, HP? I think putting ashes directly onto the earth where they can be reabsorbed as plant nutrients is the way to go. Any natural site will suffice. People tend to get creative about ashes and how to disperse them when a garden, hillside or lake will do the job. I had a friend who had wanted to be sprinkled over the ocean. So family rented a plane and had the ashes with them as they flew. When they opened the door and poured the ashes out the negative air pressure pulled all the ash back into the plane and everybody looked like Casper the ghost. It’s good my friend had a family with a sense of humor.

      • H.P.Drifter says:

        Its a project we have been working on for many years, The ashes in the streams or river (any public waterway is legal) it is a service we would offer. Each state has its own bureau of funeral affairs. Here in lies the problem (issues to deal with) I would like to see a nice boat ride with ashes and flowers scattered as one of our services.
        for the family and friends.

      • Avatar of Jon Lindgren Jon Lindgren says:

        realist 3:29 “..rented a plane and had the ashes with them as they flew…negative pressure pulled all the ash back into the plane and everybody looked like Casper the ghost.”

        Since I fly a little plane, I’ve heard of identical stories. People don’t realize the shape of a plane’s fuselage creates suction and the ashes come back in. The plane’s owner will find grim pieces of the departed years later.

        There are FAA approved containers dumped by pulling a cable from inside the plane. The other way experiences peope do it is seal both ends of a PVC pipe at least four feet long with the ashes inside. Then, stick one end out the plane’s window and have some way to pop the outside end off.

  6. StanB says:

    Death is not a scary thing for believers. I faced my death at the hands of a meth head several years ago, who changed his mind when I showed no fear and welcomed my release from this world. He finally shot it out with police two hours later so the threats were credible.

    My lady and I have discussed this several times, she is an experienced nurse. We both agree that no extraordinary procedures will be used. I am even of the mind set that transplants on me if it would just extend life and not make it better would be the way to go.

    I HAVE promised members of my faith community that if I am in a near death experience and they pray me back for a few months of painful life I would be greatly disappointed. Extending a painful life is for the surviving family when they won’t let go and does little over a natural death of a believer.

    • Avatar of realist realist says:

      “Death is not a scary thing for believers”

      I don’t think it is a scary thing for nonbelievers either. The only thing that is scary is the possibility of pain and discomfort.

  7. Wanna B Sure says:

    I had a neighbor, that when asked if he was going to go to the funeral of another neighbor. He said; “Why should I? He’s not going to mine”.
    The same guy said he was going to the funeral of another that everyone knew he just hated, just to make sure he was dead. And he meant it. See? There is a reason for full body burial.

  8. Avatar of Jon Lindgren Jon Lindgren says:

    I can’t get our of my head the idea of tatooing a message for the emergency room doctor. Maybe a note that said, “Before you do anything check www. for instructions.”

    Or, maybe just my date of birth and then a comment like, “The end was near anyway, no heroics are needed. Have a good day.” :)

    • Avatar of realist realist says:

      They’ve started doing this in surgical suites for doctors so when they see “not this leg” they know which one to do the knee replacement on. Can’t believe it has come to this. :)

      • entech says:

        A very sensible approach, I would imagine that no matter how experienced the surgeon there would be some stress involved. Very often a busy schedule, some degree of fatigue kept at bay by adrenalin.
        When I have been admitted for day procedures or could think you were surrounded by incompetents, admission checks your details and confirms the procedure you are being admitted for, the preparing nurse confirms who are are and actually asks ‘what are you here for today’, anesthetist among all his other questions ‘what are you here for today’, the surgeon reiterates previous discussion and confirms that you have agreed to what is to be done.
        Not tattoo but marking has happened to me, I had cataracts removed from both eyes, the surgeon before the operation confirmed which eye we had agreed was to be done first and then produced a big fat permanent marker and actually drew and arrow pointing to that eye. When you consider that it is a pretty quick procedure with trolleys coming and going in quick succession I think it is a sensible precaution, especially when it comes to the second eye!

  9. Wolfy32 says:

    I had seen an article that said within 30-50 years, We would have the technology to download our consciousness into computer memory. Our life experiences, and memories, as well as our personality and traits.

    I’m reading a scifi book where people not only download themselves to preserve their being and existence into computers, but, then can be Revived or rejuvenated.. Get to 60+ years and don’t like how you look, buy a shell clone body of around 16-18 years old, and then transfer the data from secure storage to the new body, and bam, you’re now an 18 year old with your 60 years of life experiences.

    Yes, it’s fiction, yet, we’re continuously developing human technology interfaces to interface directly with the human brain. I believe we’ll see a lot more changes on how death is handled from medical improvements for improved quality of life, and though we’re some time away from viable human clone production, but, it’s possible in a few generations we’ll have the technology to be alive for more than 1 life.

    That said, death is something that is going to be with humanity for a while, possibly forever, hard to say where technology and our development will take us. My grandmother had no life extending DNR orders. My mom was power of attourney. My grand mother lived to be 100 years old. At 100 she had been having “mini strokes”, can’t remember the formal term. She was in hospice at the nursing home. One of the nurses panicked, called the ambulance, and they took my 100 year old grandmother to the ER, where they proceeded to draw blood and determined that she needed blood thinners and her blood pressure was off and started to change her entire medication regimen.

    My mom was furious that they hauled her to the ER and started prescribing all these meds. The nursing home issued an “apology” for the mistake, however, in reviewing her meds, my mom said “No life preserving medication, only comfort medication.”

    The dr. said, “nope the nitroglycerin is just to make her more comfortable.” Yes, really, I’m sure it is?

  10. josh says:

    The nitro was used to relieve her chest pain and reduce her blood pressure was it not? Which would understandably make her more comfortable? It’s amazing how laypeople like to second guess the experts.

    • Wolfy32 says:

      However, it’s also a blood thinner used to prevent heart attacks and strokes… Which means life prolonging.. I’m not saying it was wrong, just saying, doctors can easily sneak life support in if people don’t ask questions and just assume the dr. has the best intentions. For my grandmother, it probably was the right thing. Depending on dosage and amount of meds given.. At the same time, I wouldn’t know if what they gave her was pain relieving or life saving or both.

  11. josh says:

    Actually it’s a vasodilator. It doesn’t thin the blood it just make more blood available to the heart.

  12. Henry says:

    Josh:“It’s amazing how laypeople like to second guess the experts.”

    You don’t say?

    • Avatar of Jon Lindgren Jon Lindgren says:

      Henry 7:49 There are those here who second guess Bart Ehrman. Shame on them. :)

      • Henry says:

        Not my rules, but josh’s. Now that you mention it, he would fit in well with you and Errhman, in him listening to you two experts. All josh’s needs could be met with the expert economist and the expert Bible “scholar”.

  13. Henry says:

    Jon, I’d like to hear what your opinion of the new city hall is. I think we would probably share the same economic values on that issue. I hear the old building is “wore out”, (i.e. failing mechanical systems, etc.)

    • Avatar of Jon Lindgren Jon Lindgren says:

      Henry 8:37 “Jon, I’d like to hear what you opinion is of the new city hall. I think we share the same economic values…”

      Mostly, as I’ve mentioned here and also did way back when I was Mayor, I’m not a fan of many public works projects. But, the City Hall building in Fargo is just one of those buildings that screams for a bull dozer. I was always apaulled at wgat a piece of junk it is. New windows were installed when I was there and other efforts to make it work have been done, but it needs to be replaced or gutted.

      • Henry says:

        That is surprising hearing that from you based on your desire for minimal public works, but if even you want it bulldozed, that truly means it really should be.

      • Catholic Dad says:

        Jon,

        Would you rebuild it in the same place or relocate it to a location that was more central to all of Fargo? Also what do you think the overall price tag of such a building should be on it? Lastly, in fun, your projection, in %, on over run?

        My opinion is it should not be located down town but more central and accessible by the ever growing Fargo. I also think they will have a 25% cost over run, and think the cost should be 25 mil.

        • Wolfy32 says:

          Yeah, I always wondered why it’s down town. Why not place it near where the city is growing…aka where the people are?

        • Avatar of Jon Lindgren Jon Lindgren says:

          C. Dad 12:52 A good and thoughtful post about Fargo’s new City Hall building. Apologies to readers from other areas who are not interested in this.

          I wish there were more discussion in this town, and in every town/city, about why we are here. That is, the reason there are cities is they are cheaper and more efficient than the country side because things and people are closer together. When cities sprawl they lose this advantage. They become more expensive places to live and in which to do business. That being the case, every decision should center on keeping the footprint smaller or packing more activity into the existing footprint.

          This is where a political dilemma enters. The citizens who vote in the elected officials want to live where the population is less dense, directly contrary to why the city is there in the first place and what determines its long term success. Then, they want streets widened and services moved out into the less dense areas. The next set of people locates further out and make the same demands.

          So, where the City Hall is located is a small part of reversing that process of “self destruction”. Locating it in the dense downtown is symbolic of efforts to increase density and efficiency. Locating it further south would be OK, too. It just doesn’t address the 50 year problem of inefficiency.

          About a 25% cost overrun, I think you are right on. The process of raising the price tag in happening as we speak. The architect is having meetings asking employees and departments, “What do you need?” Why ask? The answer of every employee is, “An office twice as big as the one I have.” Every department head says, “I need twice as many employees as I have. Build that in.” The architect will conclude, “You need to spend twice as much as you have budgeted.” Happens every time.

          Thanks for letting me vent on this, one of my favorite topics.

Leave a Reply

Your email address will not be published. Required fields are marked *

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>