<p>My mother has liver cancer (inoperable), diabetes, cirrhosis, intermittent kidney failure and poor blood cell counts, complicating chemo options. BUT she is in utter denial about the end of her life. Multiple oncologists have told her she has less than a year to live – even with chemo – but she does not believe them. She does not want to discuss advance directives and refuses to talk with family members about implementing her long-term care insurance, which would allow for a health aide at home. I must say, I’ve always admired her fighting spirit, but not particularly now, when denial seems so limiting, and so much harder on those who care deeply for her. I would love to talk with her about the meaning of this journey we are ALL taking, but it is not to be!</p>
<p>I now believe there is quite a profit-making apparatus surrounding over-treating at the end of life. The oncologists offer a few more weeks or a few more months of relatively low quality of life, imho, all for an exorbitant cost to society. The elderly want to live forever – so do we all! – and they usually take the bait. Yet when so many children go uninsured in our country, many of us sense there’s something terribly wrong with this system. And we’re right!</p>
<p>^^ That’s true! I know my dad lost a lot of sleep when I was a baby, walking me around with my colic night after night. That’s one of the things that keeps me going, knowing how much they did for me when I was demanding and helpless. But thank you, and you too, teriwtt.</p>
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<p>That’s something I’m finding too; they seem to lose the realization that anyone they love has a life outside of them and their needs. No one else needs to be considered.</p>
<p>I truly believe we treat our pets better than our humans as they reach the end of their life. I am horrified at how the medical profession (in general) works to prolong the inevitable. None of us will make it out alive. That’s a given. No heroics for me, thank you very much, and yes, it is in writing. As well, my family and friends have been verbally instructed.</p>
<p>We do try to offer some discussion about end of life and pallative care at our support group meetings for folks with lung disease and people seem grateful that the issues are discussed. We have one support group member who has been in the hospital now since August or earlier who has multiple heatlh problems and several surgeries in the time period. I can’t even imagine what her medical costs must be at this point.</p>
<p>I agree that pets are generally given MUCH more humane treatment at the end of their lives than humans and that is so sad and wrong to me. My BIL is putting off euthanizing his cat who has renal failure and is breathless and now limping. It is painful to watch the poor cat but also heartbreaking to see so many elders going through much more and worse at the end of their lives and the strain it puts on everyone around them and all their loved ones.</p>
<p>You can’t put all the blame on the medical profession for withholding or prolonging life. Many doctors do know when to draw the line. What factors in are lawyers, families, the patients themselves, Insurance companies, state reimbursement and regulations, the media, and the quest to live a very long life to the fullest.
Hospitals do have ethics committees that do address some of these issues in end-of-life care and when there is conflict.</p>
<p>Allenbytate, is it possible that your mother is trying to comfort others around her by not discussing end of life? A social worker in a hospice program pointed out to me that some patients do this to make their loved ones feel better.</p>
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<p>According to the social worker that I spoke with involved with hospice, don’t be so sure. She may be putting on this false facade for you and others that she loves.</p>
<p>Exactly northeastmom - they often know exactly what is going on but want to spare their family any pain.</p>
<p>As I said, when you add the human psyche of a patient and many loved ones, including family, it’s not so cut and dried as to who is in denial and who isn’t. Same could be said about family members. They could be voicing denial in an attempt to protect the terminally ill; so they want all the interventions possible offered.</p>
<p>It just is not cut so cut and dried. Even in my aunt’s situation, who has been a trained nurse, and with whom I’ve had conversations regarding end-of-life, I don’t know what conversations she’s having with her adult children, her grandchildren, one remaining sister (who has not been told yet because she takes things like this very difficult) to protect them; in fact, one of her adult child’s spouse has been diagnosed with a life-threatening pulmonary disease, of which a lung transplant is the only cure. While my aunt might have ordinarily been very outspoken about not wanting any aggressive treatment, now knowing that her adult child is having to watch her spouse face some major medical hurdles, maybe she’s going to try a little harder to delay her own death.</p>
<p>We never know what the reasons are behind why people, who seemingly are bright, well-informed and opinionated, might choose a route someone else might not choose.</p>
<p>Have gone back and reread this thread from the beginning.</p>
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<p>Good for you!</p>
<p>People need to learn that they absolutely need to be advocates for their loved ones. Do you know that you can basically refuse anything, even having someone’s blood pressure taken, or labs drawn? </p>
<p>Why on earth would you submit someone to pain when everyone except the big white elephant in the middle of the room, knows what’s going to happen? And yes, when someone is ill, taking blood pressure can be painful.</p>
I have struggled with whether to say this, but I don’t at all mean it in an inflammatory way. I can’t help thinking that the worst of our criminals may have more humane deaths via lethal injections than many of our frail, helpless elderly do. </p>
<p>I do not believe in euthanasia - because of the significant potential for abuse, not because I think that one is morally obligated to remain alive until death comes. I do believe in liberalized assisted suicide laws, as long as the patient is capable of making a truly informed decision.</p>
<p>My father’s mother deliberately starved herself to death. She refused a feeding tube or IV, and would not accept food or water by mouth. She was 89, and knew she could no longer return to her own home and the activities that made life meaningful for her. If assisted suicide had been an option, she’d have had a much easier passing.</p>
<p>The prolonging trend isn’t a new one. My dad had end stage emphysema (a former 4 pack a day smoker.) He and my mom were adamant about “no extraordinary measures,” but after one hospital admission my mom & I went up to the room to find him on a ventilator. This was in 1988. Dad kept trying to pull it out so they tied down his arms & my mom had a cow. The dr. made us feel like s*&t when we were insisting it be removed ("he’ll die!) so we agreed that it would be removed at the 72 hour mark. After being told he was going in a coma, we arrived to find him sitting up in a chair drinking a cup of coffee. He lasted another 18 months, but he wasn’t the same person: ended up going blind, in diapers, some type of dementia & no mobility. He was supposed to die in 1988. He didn’t enjoy the last months of his life & the family watched him suffer. </p>
<p>My mom makes sure that every physician she has knows she has a DNR. There is no way I’d ever go against that wish. There are things worse than death.</p>
<p>^^^ I work with seniors. The best advance directive to have at the moment in New York state is a MOLST (Medical Orders for Life-Sustaining Treatment), which is a 4-page form completed with the physician. It is to be honored both in and out of hospital settings.</p>
<p>Many people do not know that living wills and other advance care directives apply in a hospital setting, not outside of the hospital. Our local paramedics have told us that they will honor a MOLST, a specific non-hospital “do not resuscitate” order, or a DNR bracelet. Without any of those present, they are obligated to initiate resuscitation efforts. </p>
<p>So it’s complicated. What we can do for ourselves and our loved ones is know what we/they want, and be certain the paperwork is in order and available everywhere it might be needed. Otherwise, the medical system is going to do what it does.</p>
<p>^^^Frazzled: my mom has the DNR on her medical bracelet. I always thought that was enough coupled with the DNR and AD. Do we need to worry about this too? I hate all these hoops!</p>
<p>It would be nice to think she’s trying to spare us, but all the family has come to the conclusion she really is in denial. Every couple of weeks, she confides to me that perhaps she doesn’t have cancer after all, maybe the myriad of doctors are wrong, and all the dozens of tests are mistaken! “Because it just seems impossible for it to have appeared so quickly!” (This is a cancer secondary to a primary colon cancer for which she had surgery and chemo last year.)</p>
<p>She really needs palliative care at this point, addressing her pain, nausea, etc. But she rejects it as “hospice,” despite everyone’s explanations to the contrary. I sent her the research and quite a few articles detailing that those who receive palliative care live longer and better lives. To no avail, sadly. We all need to play along with the idea that she is curable, that after chemo (which the doctors have acknowledged she is probably not strong enough to withstand) she will be eligible for curative surgery. She is not able to make the best medical choices without acknowledging that she has Stage IV liver cancer. </p>
<p>On the one hand, her denial probably helps her to get out of bed in the morning. But on the other, she is likely to suffer much more than necessary. Her cadillac insurance plan means that she is likely to be offered every treatment possible until her dying day. When the time comes (fast approaching), she is unlikely to accept hospice, but will probably ricochet in between short stays at home and longer stays in the hospital, at great expense to society and frankly, trauma for her and our family. </p>
<p>I’m just venting here. I don’t really mean to sound so negative. I’ve always viewed my mother as a wise and spiritual person, and her approach to this particular journey just saddens me. I’m grateful to be able to post here and express some of the frustration! My heart goes out to others here, needed by both parents and children simultaneously!</p>
<p>I read an article that mentioned a study done by an insurance company. The insurance company offered terminally ill patients the option of receiving hospice care/counseling without having to stop treatments for their cancer. A huge number of patients, when offered that choice, went for it. It sounded very successful, the patients receiving the dual care lived as long or longer than those receiving only cancer treatments–and their quality of live sounded so much better. I’m sure not all hospice providers are alike or are great, but the ones in the study sounded wonderful. They were all about preventing pain and suffering and helping the families (the primary caregivers, these patients were all at home) know what to do–all of the caregivers had a hospice nurse on call 24/7 if there was a situation they needed help with. </p>
<p>Made so much sense to me. My mom wasn’t ready to give up her chemo, it was helping to prolong her life–she was in her early 60s so not old. If we’d been able to have a hospice nurse on call to help with comfort measures, it would have relieved much stress & improved the quality of her final days, which were horrible and spent in the hospital. </p>
<p>The docs were all about trying the next thing–that is how they are trained, and it is understandable. It would have been nice to have an advocate focused on the relief of suffering. The doctors were so keen to do things, that I now see only caused mom a lot of pain and in the end, did not give her more time.</p>
<p>By the way, a DNR order is not always enough. </p>
<p>A family member spent the last weeks of her life with a feeding tube, massive IV antibiotics, and hands tied to the bed. She was being treated in the nursing home that she had been in for 10 years for one of those nasty strep infections that get picked up in hospitals. She had multiple sclerosis, dementia, bed sores and many ‘mini’ strokes. She had been treated for pneumonia several times earlier. Didn’t recognize anyone, didn’t understand anything, her speech was garbled sounds. Not lucid. The look in her eyes was anguish. She had made it clear earlier that she did not want to ‘live’ like that. Some of the family thought it terrific that she was such a fighter. Some wanted only peace for her. It was hell to watch her suffer.</p>
<p>I will look into the MOLST, as I’ll bet that would have been helpful. The DNR wasn’t enough to keep them from helping her fight off pnemonia (what used to be called 'the old man’s friend.)</p>
<p>That’s what they call palliative care. Most hospice agencies now offer it. It is separate from hospice care. Although, there are some hospice patients who qualify for radiation if its intent is to shrink tumors in certain places that are causing pain… not with the intent to cure the cancer, just make the tumor smaller or disappear while everyone knows it is spreading throughout other parts of the body.</p>
I’m no expert, believe me! The head of our local paramedic team told us that they will honor a DNR medical bracelet, a MOLST, or the NY State Dept. of Public Health Non-Hospital DNR form. The form itself is practically shorter than the name for it. It’s just a 1-page deal to be signed by the MD and updated every 90 days. <a href=“http://www.health.ny.gov/forms/doh-3474.pdf[/url]”>http://www.health.ny.gov/forms/doh-3474.pdf</a></p>
<p>You or your mom might want to call the local authorities and find out what they’re looking for when they respond to an emergency.</p>
<p>If you’re a hospice patient, paramedics will honor a DNR if you’re not in the hospital. </p>
<p>They usually tell you if you’re living at home, to keep it on the refrigerator (paramedics know to ask anyone at the house to look on the refrigerator). If you’re in a nursing home, it’s usually kept in the patient’s medical chart.</p>
<p>Wow, this thread has really provoked some deep comments. I am sorry aging and dignified death is so difficult in the US for so many reasons. We have so much to learn. </p>
<p>I love the concept of [Aging</a> With Dignity Five Wishes](<a href=“http://www.agingwithdignity.org/five-wishes.php]Aging”>For Myself · Five Wishes). I have tried to help spread information about it, as I believe it can be a useful tool in helping having discussions about how to die with dignity, as the individual sees it. Our neighbor with MS/MD has worked out his advanced directives with his family. His parents have done theirs as well, as they want to be sure there are adequate assets to care for him as he cannot work.</p>