<p>These kind of discussions always make me want to hide my head in the sand. </p>
<p>I’ve gotten a great deal of wise advice from [Caring</a> for Aging Parents - The New Old Age Blog - NYTimes.com](<a href=“http://newoldage.blogs.nytimes.com/]Caring”>http://newoldage.blogs.nytimes.com/) That’s where I learned about things like geriatric care managers, who are essentially like good private college counselors for the elderly. One of the blog authors wrote a book (A Bittersweet Season: Caring For Our Aging Parents) about her journey through her mother’s old age. It read like a compelling novel, though you know how it’s going to end. One of her pieces of advice, easier to read in advance or in hindsight rather than in the moment, is to try to avoid the ICU for the elderly if at all possible. I think you can only do that if you have clear directives in advance, and if the entire family has discussed what this means in advance of any emergency. </p>
<p>Well, HImom, you are no doubt correct. In any case, I do agree with you. I can say for sure that I do not want to have my life prolonged in the physical status I have seen many elders in. </p>
<p>I have an advanced directive. I also tell my desires long and loud to my son, and my nieces, and anyone else who will listen.</p>
<p>Upwards of 60% of health care expense comes from end of life care. It is overwhelming. You will recall that there was an attempt to address this issue starting in '08. Two words killed the effort - “death panels.” There was also a provision to provide for long term care in a way similar to Medicare. Without forcing people to sign up for it, there was no way it could pay for itself so it was canned last year. Instead, there was actually a cut to home health services. We are going in the wrong direction. </p>
<p>Doctors, hospitals and insurance carriers have no incentive to reduce end of life expenses. It is a huge part of their profits.</p>
<p>The only thing that is working to help re-examine end of life costs is the upcoming provision that will refuse to pay for hospital readmissions within 30 days, I believe of a prior admission so they don’t have a revolving door as the patient circles the drain. We are indeed going in the wrong direction as a nation regarding compassionate end of life care that doesn’t provide needless, costly and painful prolongation.</p>
<p>It’s not always the elderly making decisions about their healthcare. Often times the families make those decisions for their parents or grandparents without regard to the wishes of the patient. I’m an ER nurse and I have seen many times where the dynamics within a family dictate the outcomes of the care the patient. One member of the family may want everything done while another want minimal done so to
avoid family conflict, healthcare providers often try to go the middle road and not get involved in the family dynamic.</p>
<p>Yes, indeed. I only learned the story years after my grandmother was gone, as I was young and lived far away at the time, but she spent her last years in a similar way. She had Alzheimer’s, was in a nursing home and didn’t understand why she was there, but was determined to leave. They put an alarm on her. She wanted to walk home to her long-dead husband, believing he needed her to care for him. She would cry in frustration and confusion when the caretakers would not let her out the door. It makes me so sad for her.</p>
<h1>25: I can only imagine, milkandsugar, your experiences as an ER nurse watching family dynamics. Some of my extended family is going through this now, in a protracted way. During one crisis, the most influential family member - the wife - insisted on an interpretation of the patient’s wishes in a way that the others vehemently disagreed with. This argument ensued even though the patient had documented his wishes. What he wanted was still debatable when push came to shove. When the patient made it through the crisis, he agreed that his wife actually had interpreted his wishes incorrectly. You can imagine the ill feelings that persist within the family over this incident.</h1>
<p>The lift referred to above can absolutely help a smaller person transfer a larger person - it is also helpful with things like toileting etc. Call your local medical supply business and discuss it with them. When my dad came home after suffering a stroke he was left-side impaired and unable to stand on his own. We got a lift (rent to own) and even my mom can transfer him by herself. Unfortunately insurance would not cover an electric lift (they do exist for home use), so we started with a hydraulic pump style device. It’s been almost 2 years now and she’s more tired so we will be investigating purchasing an electric lift. She is his primary caregiver (with aides in about 5 hours a day) so we need to make her life as easy as possible. I’ve learned a lot about assistive devices, so feel free to PM me if you’d like more information.</p>
<p>I recently read a story in a New York paper about a 95 year old woman who was attending one of the New York fashion shows and just keeled over and died. She loved fashion and apparently was smiling and having a good time up until then. If only we could all go like that. Quickly and spending our last moments doing what we enjoyed.</p>
<p>TatinG, that’s how my FIL went. He was at his second home on a beautiful island in the Bahamas. He worked on an electrical outlet in the morning (he enjoyed electrical work more than being a doctor!). After lunch, he went to take a nap and never woke up. A bunch of islanders came to the house, placed him a pickup truck, and paraded all over the island, a tradition there. FIL would have been so thrilled to know he went like that!</p>
<p>My grandfather, on the other hand, lived until he was 98. He couldn’t see or hear for the last few years. He’d ask my dad, “Why hasn’t the Lord taken me home yet?” It was heartbreaking.</p>
<p>Was there something more to it than one small fracture? Seems hard to believe that just one small fracture would cause an otherwise healthy person (even a very old person) to die.</p>
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<p>Probably more sensible to frame it in terms of remaining life expectancy.</p>
<p>My mother returned home from a much-anticipated cruise to Alaska, put down her luggage, made herself a cup of coffee, sat down on her living room couch, and never got up. If she experienced any discomfort, it must have been brief – she died within reach of a telephone, and there was no evidence that she had attempted to call for help. Not a bad way to go, except that she was only 75 at the time.</p>
<p>Oddly, my father (long divorced from my mother) died almost exactly the same way at the age of 83. There was no trip to Alaska this time, but he had gone out to dinner with friends the night before, worked on his Christmas cards in the morning, and had a long and pleasant telephone conversation with my sister in the afternoon. That evening, he put on his pajamas, sat down on his living room couch to watch some TV before going to bed, and simply died. His cell phone was sitting on the coffee table right in front of him. He didn’t use it. </p>
<p>Vballmom’s quote is touching-and so true! We could insure every child in this country for what we spend on end of life care. Why? Our creator never intended for us to live forever-yet we go for “quantity” without regards to “quality.” It is painful to lose a loved one-but can we not love them ENOUGH(and forget about our own need to avoid suffering the loss of a loved one) and let them go peacefully, with dignity.</p>
<p>And then there are those elders who want to stay alive as long as they possibly can. They long to hear about one more graduation or new baby great-niece born somewhere. In one way, I’m with the spirit of this thread so far, lamenting the costs of high-tech, late-life procedures that keep hospitals profitable. But I also shudder to think about someone outside of me deciding it’s time for me to go, because I’ve become too inconvenient and expensive to care for.</p>
<p>My Dad died from Alzheimers (there was another final reason related to his heart), but none of his final, silent, diapered days were useless. Sometimes I’d just sit with him and bask in his light. He was still teaching me, wordlessly. </p>
<p>I moved in with my MIL during the last 2 months of her life, a full 4 months after there was no more cancer treatment to benefit her. Hospice came into the home several times weekly, and they were amazing counselors. It was all about accepting the inevitability of death, providing her comfort and dignity until the very final hour. She died on a hospital-style bed installed in the dining room of the same house she was born in, and lived in for 89 years. </p>
<p>One day I sat with her in that room and she marveled, "I can’t believe all the things that have happened to me in my life! I remember sitting here as a little girl. Who could have imagined all that happened? (one husband - in the next room as we spoke, 5 sons, l8 grandchildren, 18 great-grandchildren). </p>
<p>At one point, I burned out and Hospice sent ME home for a week and her to a nursing home. (Medicare pays for a week of nursing home care due to “primary caregiver burnout” during Hospice-at-home). Honestly I thought the physical care there was better - including the hoist described above. But she wanted to come back home to die. I felt sorry for her that after all that, I was the one whose eyes locked with hers in the final hours before she died. And that I, with no medical training, ended up at her bedside in her final months, trying to figure out how to give meds when she coudln’t swallow and lots of other things I did clumsily, if lovingly. Dying is very messy. She deserved a bit more experienced hands, but she got me instead. </p>
<p>At another point, after she’d outlived the predictions of Hospice by several months, her son (my BIL) tenderly said to her (as advised by Hospice), “It’s okay, Ma. You can go. Everything’s taken care of here…” She grabbed him by his collar, pulled him to her face and hissed, “DON’T YOU TELL ME WHAT TO DO!” </p>
<p>I’d like to see some differentiation made between the costs of, for example, spending money to do bypass surgeries or hip replacements on 90-y.olds (surgery for surgery’s sake) and spending money to keep old folks alive if what they want to offer is telling someone “happy birthday” just one more time. My grandfather hung on a few more days to hear about the World Series, incurring hospital costs to lie there and wonder who won. That’s still a worthwhile day of life, IMO.</p>
<p>Still, I’m going to file a DNR and ask for no heroic measures for me.</p>
<p>It is really tough. Speaking for myself, having been involved in a great deal of elder care, I do not want to linger if I end up with dementia. I don’t want to be that person and I would ask for comfort care only, anything to make each day feel as good as possible, but nothing to extend life. But that’s just me, how am I supposed to make that judgment for a parent, sibling, or child? How does any of us know what someone else would want if they had the leisure to evaluate it not under stress?</p>
<p>If this kind of counseling became available, many heartaches could be avoided. Many, not all. If we offered this, there would be no reason for this:</p>
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<p>You can’t put any age or number on these kinds of decisions. People are more than an age. My grandmother had a bowel obstruction when she was 99, due to undiagnosed ovarian cancer and surgery to remove the obstruction was an emergency. At 99, she was healthy, except for her eyesight. At 100, after the big birthday party, she made them go back in a reverse her colostomy (which was needed at the time of the surgery) because she hated the bag. She lived almost two more years, with a fairly decent quality of life (if you asked her, she’d say she had it pretty good). Would go to mass every morning in the chapel of her nursing home. Is her experience common? No… but I’ve seen it happen enough times to know that I don’t think anyone should be put in charge of suggesting to someone that they’re choices/decisions don’t fit some risk/benefit ratio. We don’t need any sort of law like this; anyone can request a second opinion at any time. If you don’t like what a doctor is saying (this can go either way; this is not a science; practicing end-of-life care is more like an art) no one can stop you from asking for a second opinion and/or transferring the patient to another hospital. I’ve seen physicians recommend hospice care when it truly was not time, and I’ve seen physicians not recommend hospice care when it was truly all that should be done.</p>
<p>As someone else mentioned, I can’t even get into the scenarios where different family members do not agree on the course of action, whether or not there’s a living will or not. One of the last hospice patients I had was a 34-year old with ALS, who refused to sign a DNR (long story), but did have a health care power-of-attorney (HCPOA). I quit my job before he died, and I know he did die because I saw his obituary in the newspaper. He was in denial that ALS was going to take him (he absolutely knew in his heart that God was going to cure him so he could witness and evangelize and atone for his prior criminal history). Like I said, I have no idea how he finally died, or where, but I can’t imagine how his HCPOA felt if she finally had to override his decisions when he became incapacitated. If he’d been intubated, he could have lived years on a ventilator with nothing more than eye movement to communicate, and would have been a ward of the state. </p>
<p>In an ethics meeting, I argued that he was not hospice appropriate, because being on hospice means you are willing to forego any aggressive treatment aimed at cure or prolonging life beyond what is considered ‘average’ for someone at a particular stage in their disease. I thought he should have been discharged from hospice until he was willing to sign the DNR. As far as I knew, that never happened.</p>
<p>People can quote costs associated with living for the last few months, etc., but in truth, most times, when people choose an aggressive form of treatment, they have no idea there’s some co-morbidity underlying, undiagnosed. So hefty bills are run up treating something, only to discover six weeks later of an onset of another disease.</p>
<p>I just got an email from a cousin tonight. My 88-year old aunt has just been diagnosed with ovarian cancer after being in the hospital for almost a week with what they thought was diverticulitis. She will have a med-port inserted next week and begin three courses of chemo. If she responds to the chemo, they will offer surgery, then more chemo. After watching my 99-year old grandmother cope with this quite well, I hope my aunt gives it a fighting chance. Initially she was opposed to surgery, but now I hear she might be changing her mind. Of course, once she starts chemo, it may disagree with her entirely (it didn’t with my grandmother), and she may change her mind. But she was trained as a nurse, survived two years in a TB sanitarium, had and raised five kids. She is an educated self-advocate for herself and has every right to make whatever decisions she chooses. I suspect if she changes her mind about the surgery, it may have something to do with the fact that one of my cousins will be celebrating his 50th wedding anniversary in June, and there’s a huge family reunion in the makes around this event (there hasn’t been a family reunion since the year after my mom’s death in 2004). I know she’s been looking forward to this ever since we all learned there would be this reunion. </p>
<p>Again, different dynamics for different families and different sick people. There is no one formula fits all when it comes to end-of-life decisions. </p>
<p>While I have nothing by the upmost respect for hospice services, I will tell you there are plenty of agencies out there (mostly the for-profit ones) who basically ambulance chase. They know which nursing homes/assisted living facilities have dementia units, and send their marketing people in with all kinds of goodies. Many of these agencies have been fined for multi-million dollars because they’ve signed people up who were not hospice appropriate… seriously, people with dementia who have been on hospice services for 4-5 years. Hospice is meant for people who have a life expectancy of six-months or less, given the natural progression of the disease is allowed to be followed without aggressive or curative treatment given. Yes, sometimes this ends up being 9-12 months, but even I could tell (I’m not a medical clinician, but I’ve seen enough people with dementia to judge) when people were brought onto hospice too soon. Many times the nursing homes push it because having hospice staff stopping by 4-5 times a week to assess the patients condition and provide personal hygiene support eases the burden of the nursing home staff. </p>
<p>All I’m saying is, it’s not as clear cut as anyone can ever make it out to be.</p>
<p>P3T - you said it very wisely and with very personal experience which shows some of the ways things cannot be predicted. </p>
<p>And yes, I do believe anyone who is still breathing, has the capacity to teach us things up until that very last breath, if we’re willing to learn.</p>
<p>One problem is that these decisions aren’t always clear-cut. Sometimes there’s a life-or-death event, but often there’s just a slow decline punctuated by acute but not life-threatening crises, and you don’t notice how far they’ve fallen until you recall how they were a year ago. </p>
<p>paying3tuitions, my parents are of the live-as-long-as-science-can-keep-you-alive school. They want every heroic measure, every life-saving emergency surgery, every feeding/breathing assistance that modern medicine can provide. They’ve both had multiple events which, a generation ago, would have been fatal, but doctors keep patching them up and sending them home. Dad’s memory has been deteriorating for several years and Mom’s is also starting to fail. Every month or two, one or the other of them is in the hospital. As the weeks and months go by, their lives become more limited; they can do less for themselves; they become more childlike and dependent. We are very fortunate that they’re in a good Assisted Living facility, but even so, they consume more and more of my time and energy, demands that will only increase as long as they live. </p>
<p>And yes, they consume more of society’s resources. It wouldn’t surprise me if they’ve used a million dollars’ worth of medical care in the last 10 years, maybe much more. And they may very well live another 10 years or more, consuming more resources every year. </p>
<p>If, 40 years ago, someone had described to them their life as it is today, they may very well have said, “I don’t want that.” But they got here gradually, step by step, and so far there hasn’t been a clear-cut decision point. So they keep going on, with declining quality of life and skyrocketing needs that have to be met. </p>
<p>Wow … reading this over, I’m struck by how bitter I sound. Is it possible to love your parents dearly, and yet resent the heck out of them? I think that’s where I am. :(</p>
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One of the blog authors wrote a book (A Bittersweet Season: Caring For Our Aging Parents) about her journey through her mother’s old age. It read like a compelling novel, though you know how it’s going to end. One of her pieces of advice, easier to read in advance or in hindsight rather than in the moment, is to try to avoid the ICU for the elderly if at all possible. I think you can only do that if you have clear directives in advance, and if the entire family has discussed what this means in advance of any emergency. </p>