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<p>While working in the ICU, I lost count of the times a patient would cling to life as family members made a bedside vigil, never leaving the room without a person there to will them to hang on. Then, an extraordinarily rare moment of solitude would come while someone went to the restroom or the cafeteria, and boom, the patient would die. It always gave me chills when that happened.</p>
<p>Nrdsb4- or how many times a patient that should have died would hold on until that last family member made it to their bedside to say goodbye.</p>
<p>Nrdsb4…I saw this as well. We are a family that does the bedside Vigils. If someone is admitted to the hospital we are there the whole time and we sleep in the waiting room. When my mom was passing her Dr a good family friend asked me to get the family out of the room so my mom could go peacefully. He said he wanted the nurses to change the bed and make her comfortable. She died as we walked back into the room. I never forgot him for that and I am very grateful that he was there.</p>
<p>My FIL hung on in the hospital until he knew H & I came back from a trip to Europe. We visited him in the hospital in CA on our way home & when he was finally CONVINCED it was us and we HAD come back to the US safely, he relaxed and died later that month. We were relieved but my SIL who maintained the vigil took quite a while to come to terms with him dying. It was easier for us, since we had not there in the hospital at the time.</p>
<p>My SIL’s grandmother broke her toe & was recovering nicely. She was >100 years old. She called all her relatives to the hospital & they all said goodbye. She refused nourishment & died a few days later, comfortably.</p>
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<p>Yes, have seen that as well.</p>
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<p>And my post was not in any way a criticism of that. Some families feel strongly that their loved one not die alone, so they stay to offer that constant loving presence for their passing as opposed to using their mental/spiritual energy to keep that patient alive for their own reasons rather than the best interest of the patient. My DH was heartbroken that none of his family was present when his grandma died. He felt she might have felt that she had been abandoned. He would have been okay with her passing, but feels eternal regret that he wasn’t there to hold her hand while she slipped away.</p>
<p>So I get it.</p>
<p>My 90 yo grandmother isn’t afraid of dying…she just doesn’t want to die. She loves life, has a wonderful circle of friends, more money than she needs, and was just plain happy until a few months ago. </p>
<p>Right before Thanksgiving she was diagnosed with congestive heart failure. This, on top of her pulmonary fibrosis and pulmonary hypertension, keeps her nearly bed ridden. (In October she was strong enough to dance at her own birthday party.) My mom says the fatigue and loss of independence have brought Grandma to tears several times recently. </p>
<p>Now she is “getting her affairs (more) in order” and preparing for the end. I hear she just taped the DNR order to the fridge yesterday. She’s rather sad about facing death, but won’t invest in much more than comfort care. She knows there are no cures for her conditions. </p>
<p>She’s just sad she has to die. She loves life. She wants to wait for the green flash at every sunset, then wake up tomorrow and play bridge. But now, because she doesn’t believe in Heaven or hell or reincarnation, she’s just waiting for the end. Waiting to go “poof.” </p>
<p>It’s not worse than any other demise. But, that’s got to be a horrible way live. Or die, as it were. It’s definitely heartbreaking to watch.</p>
<p>When my 86 year old dad was terminally ill, he and the family decided against painful care which would only increase his lifespan by months. Family gathered round as my Dad was moved to a hospice, and I stayed with him for most of his last week. My son visited, but then simply had to fly back to work for something for which he was in charge and told me he’d have to miss the funeral if it was before Thursday. As dawn broke Sunday morning, I said to Dad, who was unresponsive, “It’s a beautiful Sunday morning. If you go to heaven to be with Mom today, DS can be back by Thursday, so everyone will be at your funeral.” He never took another breath.</p>
<p>All is theoretical until it applies to you. That’s why you need to update your wishes to family and care givers.
I’m always amazed at the power of emotions that govern the human body. Love makes one hang on to the last.</p>
<p>The most powerful stories the OP’s original question “How much would you pay” elicited had nothing to do with cost.</p>
<p>Since the original question brought forth interesting and useful and hearfelt stories, all is well. I was initially put off by the false notion of reducing our decisions to the lowest common denominator, as if our decisions are really based on somethng as narrow as cost.</p>
<p>We tend to use that reductionist reasoning in many parts of lives (e.g., discussions about college.) Luckliy we are seeing more behavioral economics studies that tell us that our whole selves (with mixed and intermingledrational and irrational elements) make decisions that a pure economist would call irrational.</p>
<p>I’m not looking forward to these decisions about inlaws and parents.</p>
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With all due respect, the cost of this care isn’t the “lowest common denominator.” People don’t like to talk about it, but pretending that the cost of extreme end of life care is irrelevant is not responsible. I think while we all agree that heroic measures which might give a child or young adult a chance at life are worth taking, the calculus behind a decision to take those same measures for an elderly person is far different. I know that I feel that way about my own life - and I’m not eligible for social security (quite) yet. I’d spend every last dime to save one of my kids’ lives. My own? I’d probably want to run the numbers before deciding. I’ve already lived a very good and very full life.</p>
<p>As a society facing a very real crisis over the overall cost of health care, we underwrite those expenses for the very old, but not for the young. That’s not something to be ignored or shied away from. As I mentioned, I think my MIL’s decisions would have been different - and easier for her - if medical care for virtually anything except simply staying home had not been free for her.</p>
<p>This is an instance in which I think factoring in the economic condition of the person involved actually does make sense. I’d ramp up the co-pay of the elderly for medical care after age 80 (with a means test) so that it isn’t “free.” I think that people would make different decisions if they knew that the cost of the surgery, or chemo, or whatever was actually going to come out of their own savings. And then I think you’d see a more rational approach to end of life decisions by the people directly involved.</p>
<p>I know it sounds cold - but I think this is one place where capitalism should be allowed a bit more say in the matter. If I had six months to live but could extend that for another six by paying my entire life savings, would I choose that? Probably not. I’d have better priorities for the money. I think cost * should be *included in the decision-making process for the elderly.</p>
<p>The fiscal aspects of this situation can be addressed in many ways. I do believe that people becoming more accustomed to talking about both the issues and their personal preferences can help with the financial concerns. If you don’t know how someone is thinking about their mortality and end of life care preferences, it could be extra hard to opt out of more treatment. If you have heard “no heroics” as a mantra for years before your loved one dies, it can fortify you to honor their wishes, regardless of your own ambivalence or wish to hang on to their presence, however compromised they are. </p>
<p>Whatever your perpective is, communicating it is ultimately the greatest gift to those close to you. Not all will be able to respond in kind, but those who can will be fortified by the knowledge that you would have wanted it “x” way. This was the most comfort to me as I sat and signed the “no more treatment” papers. I speak directly about my thoughts on these matters with my family and hope that when it is not an abstraction, all the discussions will give them what they need to get through it. </p>
<p>Poignant stories on this thread and I appreciate all that people have shared.</p>
<p>Nrdsb4…I didn’t take any offense to your post and in fact I kind of laughed when I saw you refer to it as the bedside vigil because I always joke with my kids and friends when I tell them about our family doing “the hospital Vigil.” I do thank God for the doc that got my family out of the room so mom was able to go.</p>
<p>Whenever the topic of death comes up I am always prepared to tell every and any family what my wishes are. I never want any of them to ever feel that they gave up on me. The paperwork is all written up but I saw my sisters kids struggle in those hours and thankfully my brother and I were able to assist them in telling them exactly what my sister wanted. We even knew her funeral requests and I was able to tell my niece exactly where the box containing all of the clothes she wanted to be buried in. </p>
<p>People need to talk about their wishes for end of life situations. Tell your children, siblings and friends. I don’t mean walk around talking about death repeatedly long before you are going, but be sure to live your life with no regrets and tell people you love them. I never felt guilt when I signed the paperwork for my mom. We talked all about it and I knew she no longer wanted to go on.</p>
<p>Excellent post, Kluge.
H and I did our living wills back in our 40s.
I’m a former oncology nurse and have made my decisions about my end-of-life treatment. However, it was not just my nursing experience that informed my attitudes. My sister died at age 18 after 12 year illness. I will never forget her comforting my physician dad the day before she died. She told him it was OK to let her go, that he did all he could but it was time for her to die. I only hope to have a fraction of her dignity when it’s my turn.
Also, my BIL died an early death form ALS. He and my sister opted for no trach or ventilator early in the disease process. Of all the many deaths I have witnessed, that by far was the most agonizing. He was in a in-patient hospice and only died when my sister went home for a shower.</p>
<p>[Our</a> unrealistic views of death, through a doctor’s eyes - The Washington Post](<a href=“http://www.washingtonpost.com/opinions/our-unrealistic-views-of-death-through-a-doctors-eyes/2012/01/31/gIQAeaHpJR_story.html?wprss=rss_opinions]Our”>http://www.washingtonpost.com/opinions/our-unrealistic-views-of-death-through-a-doctors-eyes/2012/01/31/gIQAeaHpJR_story.html?wprss=rss_opinions)</p>
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<p>In my experience, it is doctors who view death as a failure, not the families. I’m sure it comes from both sides, but to suggest that most doctors are on-board with stepping back and letting nature take its course contradicts my own experiences. </p>
<p>I do agree with the author that end of life treatment can become sanctioned torture. But finding a medical team that will go along with letting nature take it’s course can be difficult outside of hospice care.</p>
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I think a more typical situation is something like this. My Mom has Alzheimers and things have regressed to the point where she now has a DNR (Do Not Resurrect) order. Recently the care givers at her home found blood in her stool and scheduled a doctor’s appointment for my Dad to take my Mom to a doctor to check it out in a few days. Luckily my Mom had an appointment the next day with her neurologist who asked why we were taking my Mom in to get the blood checked out … this would require a colonoscopy … she wanted to understand what treatment we would OK given results of the test … and would this intervention be worth the pain and discomfort of the test itself. The answers were … our first instinct was to try to treat the problem … but if we stopped and thought about it going all in researching and treating the blood in her stool is not what is best for my Mom at this point (and might have cost a ton also) … so we canceled the follow on tests to check out the blood in her stool … and without the neurologist we would have gone down the path of intervention because that is our natural reaction to a medical issue.</p>
<p>Yes, it makes sense to me to figure out what one would do with results. Personally, I have been asked why I haven’t had my genome sequenced particularly for a health condition I have. I asked what particular changes in treatment would be available that are not currently available to me with those results and was met with silence. Have not opted to explore this, but have spoken with several of the cutting edge researchers and let them know they may have biological samples if it would help THEM in working toward treatments and cures, even tho experimental. So far, have not had many takers but have complied with the few requests I have received at my personal expense.</p>
<p>To me, docs & families would all benefit from taking a step backwards and trying to fully consider the options and side effects and risk/benefit more carefully before agreeing to more, more, more, which is often NOT in the best interests of anyone. 3togo, glad your mom has a good and compassionate neuro.</p>
<p>My mom is 84 and in relatively good health. She has, however, always hated doctors and never done well with illness. So we do evaluate pretty much every health decision on the basis of what will we do with the information and how will this change the natural course of things. For example, she refused a pneumonia vaccine (her reasoning, old people die of pneumonia, what will she die of if she can’t get pneumonia? Not necessarily the best reasoning, but valid on some level). On the other hand, I explained that shingles was just going to make her miserable, not kill her, so she grudgingly go the shingles vaccine. No more mammos or colonoscopies because she wouldn’t treat anything they found.</p>
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<p>The problem with this proposal is that it is an arbitrary age. Why 80? My grandmother lived (on her own) till she was 93, and died suddenly of a heart attack. My mother is 83, has an excellent quality of life, and survived chemo for Hodgkins lymphoma 2 years ago. We absolutely could not have afforded the chemo without Medicare.</p>
<p>Should her family’s longevity be held against my mom? How do you know when you’re choosing six months of “barely living” or a dozen years of satisfying living? And that’s when the financial issues are problematic. Believe me, nobody is rich enough, especially if the family is deciding how much is too much. No easy formula for this.</p>
<p>I agree. Why pick an arbitrary age to cut off health care? Some people are old and frail and 70, but others are full of zip at 80 or 90. In my bicycle club we have quite a few members in their 70s. One guy just had to cut his riding back severely at the young age of 89. Another guy just celebrated his 91st birthday. And these guys are doing 25- and 35-mile rides every week.</p>
<p>Instead of picking an arbitrary age, we should figure out which treatments for which people don’t work, and not do them.</p>