Prolonged 

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I looked around the room of somber faces. They were looking to me to intervene, to work some miracle because so far no one else had.

“She had a bad stroke one night. She was sent to rehab but didn’t progress so they sent her to a nursing home to do physical therapy. But she didn’t do well with that, either. So now she has been there at the facility for six months with a tracheostomy and a feeding tube.”

We had had this talk every year for five years:

If your heart stops and you stop breathing what do you want your doctors to do?

Every year she told me very firmly that she just wanted to be allowed to die. She did not want her life prolonged, especially if it was going to be like this… not able to communicate or do anything on her own.

Doc, I know I should get that paperwork done, but I just have not gotten around to it. I will soon, though, I promise.

But she never did.

My family understands. They’ll make the right choice even if the paperwork isn’t completed.

Her daughter, standing here, believed fervently that her 92 year old mother was going to make a full recovery. She cried when I told her what her mother had told me.

“No! She wouldn’t want that. She wouldn’t ever want to give up…”

I would rather die.

Death comes for us all. Sooner. Or sometimes later.

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100 thoughts on “Prolonged 

  1. ten years ago I had a heart attack..It was a really big one and I was actually amazed that they brought me back from the precipice. They didn’t have a copy of my DNR and my husband could not be reached. It was a blessing on that day..BUT, I have a new DNR and I keep a copy of it on me at all times. And every hospital within 100 miles has a copy of it. My personal doc has a copy of it as does my cardiologist. it is specific and there will be no doubt whatsoever what i want done. I wish mY mother had one. She was dying from carcinoid tumor and all its resultant problems. She stroked out and was in a nursing home on all kinds of bloody machines for over six weeks before she finally died. Her bills broke my father. He had no means to pay for them so he sold his home to try to cover some of what medicare denied. He too died within a few months of my Mother and every day he breathed he worried about the bills. EVERYONE should have their last wishes spelled out, notarized and distributed. just my opinion. It is heartbreaking to be the one to make a decision and not everyone is equipped emotionally to do so.

    Liked by 7 people

    • Amen. It is a kindness to your family to take the decisions out of their hands, no matter what your preferences are for how you go…. Heroic measures or not. I have patients who struggle with the guilt of torturing mom or dad by doing everything possible or worrying about killing them if they were responsible for allowing death. It doesn’t have to be that way. Your legacy does not have to be guilt and torment.

      Liked by 5 people

  2. Sad. Feeding tubes put into patients with no hope
    of recovery seems wrong to me. The patient is
    unconscious person maybe feels nothing, the
    family suffers.
    We both hav specific DNR instructions, all people
    should. It takes the decision making out of
    medical doctors, and family hands.

    Liked by 3 people

  3. I have one, and so does my doctors. But I think it may be difficult for family to understand and let go, even when it is spelled out.

    It’s also important to let family know what to do with you when you’re “gone.” My nephews had no clue what to do with my sister Beth’s remains. I knew that she wanted to be cremated, but they were skeptical. “Why did she want to be cremated?” they asked. “Worms,” I responded. They realized that i was right, as their mom had a lifelong fear of bugs and crawly things.

    Liked by 7 people

      • There’s something that happens too, when you’re watching someone slowly die, that takes away the ability to see the Big Picture. It becomes all about the minutia, the tiny details, every second feels like an hour, every day feels like a week.

        Liked by 3 people

  4. It’s often hard for family to accept our choices when we’re alive and advocating for them. Almost impossible to accept those choices when we’re gone. I know from experience not only do you need that piece of paper, but that it’s also vital to have those tough conversations. With all who might be involved.

    Liked by 4 people

  5. When my son was in the coma, (GCS 3 from the start, elevated ICP, BP all over the place, etc) and with the horrendous prognosis we were given, I just wanted them to let him go if he could not recover, which they warned was less than likely, even while I was fighting for him to live. It is a confusing state of mind and heart. I was very grateful to be told that here it is always a clinical decision, though that family’s wishes are ‘taken into consideration’ in such cases.
    I wouldn’t want to be a doctor.

    Liked by 3 people

    • It is so difficult with young patients to predict how things will go. There are plenty of miracles out there and, especially for young patients, we all hold out hope for one, physicians included. I am certain, even as a medical professional, that I would not be able to agree to withdraw support for my son were he in the same position.

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      • Even now, I don’t honestly know what I would have done had the choice actually have been offered. It doesn’t feel the way the horrible parental imagination that fears the ‘what ifs’ thinks it will feel.
        When Nick finally moved a limb, the specialist dived across the ward, with a great bear-hug and huge grin, saying ‘You’ve got a miracle on your hands.’ Nick has proved him right. Yet that edge was so close…

        Liked by 4 people

  6. Death comes in different ways, too. I have to be honest and say I haven’t filed out my paperwork either. I’m not sure what I want so I’ve been putting it off but I talky should give it some serious thought.

    Liked by 2 people

  7. On the one hand, I think taking the decision out of your family’s hands is doing them a kindness. But on the other hand, I can imagine some scenario where I might be hospitalized and in a coma for reasons other than what I anticipated, something where there might be some hope of recovery, however small, that if I’d had the chance, I might have opted to wait another month or two, just to see.

    I guess I don’t know that much about DNRs, so I wonder if they can cover every scenario, every eventuality. I’d love to spare my children from ever having to make the choice to unplug Daddy, but sometimes I think they might be in a better position to make such a decision than just leaving it to some piece of paper I filled out long before.

    Liked by 3 people

    • They can be as specific as you like, actually. There are basic forms available for each state but if you want to get fancy you probably need an attorney to help you navigate. You can designate “if terminal” or just say “don’t put me on machines no matter what!”

      Liked by 2 people

  8. Must be challenging to deal with patients’ families who want to extend life no matter what. I took care of this paperwork a long time ago. So I should probably do it again to have something more recent on file, to prevent any misunderstandings. As I told the doctors while passing a kidney stone, “Just shoot me.”

    Liked by 1 person

  9. How incredibly helpless you must feel when faced with this scenario. My mother’s physician/specialist was AWESOME!!!! When the time was right and I asked the right questions she gave to me the right answers. In her answers I knew two things. First, this doctor knew my mother and her wishes well. Second, this doctor cared about her patient, my mother. We were blessed to have such a special clinician caring for my mother. From your passionate writing no doubt you are the same Victo…

    Liked by 3 people

  10. Even if the paperwork is in place, and even if copies have been given to every family member, it’s still so hard to make the right decision at the crucial moment. My mother had everything in place, and we all knew her wishes and agreed with them, but at the last moment I felt an urge to say, no I can’t let her go. We respected her wishes, and I’m glad we did. I think she would have come back to haunt me otherwise.

    Liked by 4 people

  11. This is my husband’s family exactly. My BIL(brother in law) and SIL ( sister in law) fought over their parents and by doing so, made everyone angry and upset. When my BIL pulled my MIL ( mother) out of the situation, and put her in a memory care unit, it scorched my SIL to no end. My FIL actually had a few moments of peace for the first time in 16 years since the diagnosis of dementia and Als. My MIL was in a bad way. When my FIL got very sick, and death was imminent, she refused hospice care until my BIL overrode her. To this day, she say it was Hospice that killed him. No, cardiac arrest and kidney failure at 95 did. She thought he would recover. Now, my MIL is in a nursing home and she does nothing to help her or see her…including getting the paperwork so she can still receive my FIL’s pension and so forth. TOO much paperwork! So there is thousands of dollars not being used for my MIL. I really cannot stand her and it makes for very bad family gatherings, that TG, are not so often.

    Liked by 2 people

  12. I’ve driven this into my family and also if they ever hear the words, Catastrophic brain injury they are to say NO. I hope they can.
    I remember with my own dad (fifty, paralysed with Motor neurone disease) I promised we’d keep him at home. Then our amazing public health nurse went on holiday and the replacement insisted we call an ambulance and have him admitted, due to a high temp. I arrived home and went crazy (at twenty years of age i was still not someone to ignore). She won in the end, but I managed to get him discharged very quickly. I’m still bitter. He’d only a couple of weeks left to live this was 48 hours away from his family, all because she thought she knew best. I only hope she learned this was not what he wanted and his consultant and GP supported us.

    Liked by 2 people

    • When you are new to it, you want to save the world. Is isn’t until later that you realize that sometimes the world cannot be saved and it is OK to let it go. I bet you were a great learning experience for her, though I am sorry your dad suffered as a result.

      Liked by 1 person

  13. I told my mother (from my training as an EMT) to have a DNR posted on her refrigerator door. Plus she wrote it into her will, so her attorney knew it. It’s always hard for kids to let their parents go, unless they train them ahead of time!

    Liked by 3 people

  14. We both filled out the “Five wishes” last year..then read something called “How Doctors Die” which clinched it for me. then last week we were talking with a hospice counselor about this same topic…she made the comment, she wanted to move to Washington (State) if she were ever in this situation, because, in spite of having things spelled out, it is possible to linger on, for a long time….there are so many variables aren’t there? I watched my father in law (who was a family practitioner himself) die a slow death of of Shy- drager’s http://medical-dictionary.thefreedictionary.com/Shy-Drager+syndrome I think I would want to be living in Washington myself if I were ever diagnosed with something like that.

    Liked by 2 people

  15. Excellent post Victo. I learned lot. I did not realize that DNRs could be personalized. I inquired into a DNR when things were going poorly in my life. One of the nurses in dialysis took me aside and suggested that I dig deeper before making such a move. The problem is that it is not uncommon for dialysis patients to experience AFIB requiring electrical cardioversion to reset the heart. Some will also lose consciousness from blood pressure too low and require oxygen. Both of these issues can be terminal if not treated.immediately.

    Here is the kicker- and I’ve seen it in operation before – the nurse said that the doctors and staff are trained to do everything in their power to save a life- life comes above all else. So when a life comes in the door and says – Don’t save me, they object. And that objection plays out not only verbally but also in treatment. Think about it – if your patient doesn’t want to live, why should you try your hardest to save their life, and wouldn’t you be second guessing your treatments to determine if the patient would have wanted it? At the very least it introduces a hesitation and at worst a reduction in care.

    I can see you getting indignant already Victo. In the first place, having read your thoughts for a while now, I suspect you can put quality of life ahead of life itself. You are not in a large group. Second of all, it is not always the decisions of the primary doctor that determines the outcome. For instance in kidney transplant the anti-rejection drugs sometimes cause cancer. It is treatable and seldom, if ever fatal, but it is cancer. Each transplant is decided by a panel of three doctors who vote yeah or neigh – removing the responsibility from an individual. One of the criteria is if the patient has been cancer free for a number of years. If the patient had cancer caused by a failed transplant – that still “should” make them ineligible, based on the published rules. I have seen the panel bend those rules because of an emotional plea from the patient. Many large decisions at hospital level are made this way for obvious reasons. With a DNR on file, it would influence the panel to not administer treatment- even if that treatment went to quality of life.

    Liked by 2 people

    • I am not sure how things go in Canada, but I tell my patients that DNR does not mean “do not treat”. The standard form says that if something catastrophic occurs, heroic measures are not used. Oxygen is fine, so are meds but no intubation or chest compressions. Cardioversion for a-fib would be done if needed but if your heart stops completely, they would not try to shock you back to life. I suspect the nurse who was advising you was not informed if Canada laws work like those in the US.

      Liked by 1 person

  16. Hospice was very clear on this matter when my dad was dying from lung cancer. Several of my brothers could not accept the fact of they would not help but that is not what they meant at all…once it was explained about a 100! times they finally agreed to a dnr. One other story…my dear sil at the age of 29 had brain cancer …a rare form. They brought in all these surgeons etc from all over…they never had a chance. After declaring her “brain dead”…(I hate that term) her family (Mormon) was willing to let her go to pass beyond the veil. Our family was not. Through their grace and generosity of faith they gave us several days and then we did see what was best. I have always thought since then what a great gift they gave us while their sorrow must have been so horrific.

    Liked by 3 people

  17. I’m in the number who has not done any paperwork about ‘last wishes’. One of the reasons is, I don’t quite know what they are. I am in my 60s and have not had significant health problems, although I am no stranger to hospitals and sick people. As you mentioned, there are so many variables. In one sense, I am like a young person in one sense, mortality is very removed for me; on the other hand, thoughts of dying very familiar to me. I’m confused.
    j

    Liked by 2 people

    • I do understand that. I am not the person I see staring back at me in the mirror. I am still 30 years old, damn it! I already have paperwork because I live this every day, but if I did not do what I do I would probably not do any paperwork until the last minute, either….

      Liked by 2 people

  18. My mother was the more sickly of my parents, but surprisingly, she outlived him, even for just two months. I tried my best to keep her alive even if it meant rushing her to the hospital, every month, without fail. I did it because I loved her, and mainly because I did not know God’s plans – I do believe in miracles. I did it because every time I brought her to the hospital, she lived and came back home. I did also prepare myself for the worse, if she was to die, but I was determined that as long as she was breathing, I would do my best because, again, I did wish for a miracles and He did give it to me several times.

    I did not want her to think that I gave up on her, my mother, so easily. But on her last days, I would whisper to her that I loved her but if she had to go, she could let go. I knew I was the one keeping her as she didn’t want me to be alone, but I told her to not worry about me, that didn’t she know already how feisty I could be, that there was actually someone loving me (who is now my husband). When the doctor finally told me to call a priest, finally, I knew there was no going back for her and so I let go as well. We kept her alive long enough for the priest to perform a little prayer/mass and then we waited until she was gone…

    I can understand the daughter in your story, although I do think that her mother being 90 should’ve sunk in already. She was lucky enough to have had her mother that long. The moment you told her what the mother said, she should have finally let go. Then again, it’s her mother. Who am I really to judge?

    Liked by 2 people

    • That is the thing. We don’t know their history. All I have are brief snapshots. Maybe there was some reason her daughter did not want her to die? Something unfinished between them that she needed to resolve for peace? Dunno. You did the right thing telling your mom it was OK to go.

      Liked by 1 person

      • Could be true. It is often the guilt that keeps us from letting go – guilt over something bad we said or did, guilt over something that we SHOULD’VE said or done. I have realized long ago that people cry over loved one’s death in a sort of selfish manner. We cry because we will miss them, we cry because of the guilt. But it is natural just the same.

        Liked by 2 people

  19. I’ve always figured if I’m young and there’s a reasonable chance of recovery, do everything possible. But if I’m old, just let me go. But “old” tends to get older and older. My mom was in her eighties when she started sleeping more and eating less to the point of dramatic weight loss. She seemed to forget how to swallow. So they put in a feeding tube and my father had to clean it out when she wasn’t sick enough to be in the nursing home. She lived like that for several months. It was really hard on my dad, but he didn’t want to let her go. I’ve told my husband, if I’m 80 or older, no feeding tube.

    Liked by 3 people

  20. I already told my husband and children just let me go. No tubes, no surgeries, nothing .D.N.R., they were all shocked but I did get my wish across. No funeral, just Cremation and I gave my husband instructions as to what to do with my ashes. I did agree to my family celebrating my life at a dinner after I am gone. I also told them all, that if my wishes were not followed, I would come back and haunt every single one of them forever, then said to cherish me now, because when I’m gone it will be too late and they will have regrets big time. They believed me. I am happy. :o)

    Liked by 4 people

  21. Very sad. I watched my GM die a long slow painful death of the like. I wished back then my Dad and Aunt hadn’t taken measures to prolong it. She had a sound mind but nothing else worked. Lost a leg, couldn’t talk, swallow, move..It went on.

    Liked by 3 people

  22. The lack of a living will put a rift between my sister and I that I doubt will ever heal.
    My mom was in intensive care. I wanted to give her every opportunity to recover. My sister felt she wouldn’t want any intervention in case she ended up permanently on machines.
    She recovered, but the lack of intervention caused heart issues.
    The thing is – there wasn’t a clear guideline. So we had an angry fight and I made one of worst decisions of my life. All for lack of a clear guideline from the person most affected on a piece of paper.
    I wouldn’t do that to anyone. It a horrific place to be. And it will rip apart a family.

    Liked by 3 people

  23. Great post and comments. What is more important to think about than this? We all get there and so do all the people we love.

    I did an Advance Directive for my state and wrote up a one page “essay” and stapled on there too, just detailing my philosophies and wishes. Basically that while I love life, it is tough enough and I wouldn’t want to be kept around if I wasn’t of sound mind and body. I felt like a grown-up when I did this a few years ago. It’s essentially acknowledging that I too will die (even if an irrational part of me feels that doing so is tempting fate).

    Liked by 2 people

  24. It’s a tragedy when the fear of grief and loss outweighs the love you have for someone.. The family knows you wouldn’t lie about her wishes.. Be it right or wrong, no one else should be able to hold you and your quality of life in a prison.. I wish the woman had just followed thru making her wishes legal.. But wouldn’t it be something, that in this woman’s state right now, when faced with death without the machines, she’s changed her mind but can’t tell you.. Making her daughter’s decision the right one.. Unless someone is brain dead, do we know what they think and feel ?

    Liked by 2 people

    • We don’t know. If she could speak now, what would she say? Many people feel physicians have an ulterior motive for DNRs, that they are being lazy or have been ordered by the hospital or the government to save money by making sure very ill, costly patients die…

      Liked by 1 person

      • It forces you into a position you didn’t sign up for.. No matter what you say, the preconceived notion will stick with those families.. I guess you are only left with not letting it wear on you and forgiving them of hurtful words in thier distraught state.. Big shoulders are required for the healthcare field, and you have them..

        Liked by 1 person

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