<p>Maybe the best thing we can all do is to speak openly to our friends and family about our wishes, and be open to others as they speak about their wishes. Get one of the forms that are available and fill it out. Be informed and assertive for ourselves and family members when the time comes.</p>
<p>I have a terrible fear of suffocation in my last moments. I do NOT want to fight for air. I can take pain but not that.</p>
<p>This is an article about a 13 year old girl in the UK who made her own decision.</p>
<p>[Girl</a> dies aged 13, five years after refusing painful cancer treatment - mirror.co.uk](<a href=“http://www.mirror.co.uk/news/top-stories/2011/12/14/girl-dies-aged-13-five-years-after-refusing-painful-cancer-treatment-115875-23633586/]Girl”>http://www.mirror.co.uk/news/top-stories/2011/12/14/girl-dies-aged-13-five-years-after-refusing-painful-cancer-treatment-115875-23633586/)</p>
<p>I’ve always been interested in this and have read a lot about it.
It’s up to the patient if they are able to make that decision for themselves. It’s easy for a young person to say 80 is old, you’ve lived long enough. What happens if you’re 80 and decide you can make it to 90? My grandfather had a heart attack in his 80’s and he lived to 96…16 years longer. Glad nobody said it was okay to let him go.</p>
<p>Cancer treatments are interesting to me because there doesn’t seem to be a “best” drug at times. The newest, best drug that works for 90% may not work for you. The old drug that’s now discarded by the profession as old hat may work for you just fine. Sometimes the “horrible” side effects that people think will severely alter their lives never appear.
OTOH, the statistics for chemo treatment need to be understood. They can be very misleading. “It will double your expected life” can mean you’ll die in two months rather than one. but some people need that month to put their lives in order. It could be significant not only to them but their family members.</p>
<p>I know one person who has refused treatment knowing he’ll go soon. And is at peace with that decision. Not sure his family is but they are respecting his decision. I refuse to pass judgment.</p>
<p>I have seen doctors push patients into hospice care before they are ready. They may refuse a suggested treatment and the MD signs them up for hospice. They aren’t looking to die peacefully; they’re looking for optional treatments. That’s sad.</p>
<p>The meaning of “Quality of Life” varies greatly. When young, anything less than full speed ahead is a dip in QOL. When old, you may think it great that you woke up and the sun is shining.</p>
<p>I think all you can do is let your loved ones or caregivers know your wishes and as you age keep them updated as you change your mind.</p>
<p>I hope I never have to make a decision about a child.</p>
<p>I work in a pediatric ICU and even when it is obvious that what we are doing is futile, no one wants to give up.</p>
<p>My oldest spent the first 8 weeks of her life in an NICU. She had surgery when she was a day old when diagnosed with necrotizing enterocolitis.
She pulled through and is finishing up grad school. I really appreciate the care she received in the teaching hospital- especially from the nursing staff -
She was able to have access to high risk anesthesiologists at a time when not all hospitals used anesthesia on premature babies.
She made a spectacular recovery- unfortunately- it can be hard to tell with infants which will do well & which won’t.
Much more difficult with a child at the beginning of their life.</p>
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<p>You speak for me, too, momma-three.</p>
<p>As far as who does the ‘pressuring’, in all honestly, it happens on both sides of the coin. Yes, physicians often don’t initiate the difficult conversations that need to be made and often wait for clues from the patient/family or health care power of attorney that they’re done seeking aggressive treatment. But just as many times, there are family members who aren’t in agreement with which procedures and treatments to actually decline and which to continue (i.e., some have a hard time saying no discontinuing IV fluids, but don’t want to force food), so they delay making any decisions. This happens quite frequently, family members and loved ones not being on the same page. And although having a living will is a great help, I’ve seen lots of family members refuse to honor it and threaten to take someone (whoever they think they need to fight with) to court. It rarely ever goes to court, but just the threat causes delays and grief, and reluctance on the physicians to do anything when family members are fighting. </p>
<p>One of my most memorable patients when I was still working with hospice was a young man in his mid 30s, who was not a U.S. citizen (so did not qualify for any public services) who was diagnosed with ALS. He’d had a religious conversion just months prior to his diagnosis and was convinced God was going to cure him so he could witness to others who’d made bad choices in their lives. He wouldn’t sign a DNR, which basically implied he was not willing to forego a ventilator if he stopped breathing. ALS patients who are put on vents can live for years and years. When I left the agency, it was a case that had been brought to our ethics committee because many of us believed he was not hospice appropriate. He was not willing to decline heroic measures and accept he was likely to die within six months. So if and when the time came that he went into respiratory failure (which is how most ALS patients die) and he was put on a vent, he no longer qualified as a hospice patient, and would have become a ward of the state. So it was a very tricky, complicated situation where there was little family support due to choices he’d made in his earlier life.</p>
<p>I left the agency before he died, so I don’t know what happened, but I do know he died about three months after I left because I saw his obituary in the newspaper. But I don’t know how those last weeks and days were dealt with, and whether or not he eventually signed the DNR. </p>
<p>Yes, this is an anecdotal story, but identifies so many ways that making the decision on how to treat a terminal illness can often not be a black or white issue.</p>
<p>Zoosermom,
I’m sorry about your friend.</p>
<p>I have experienced several deaths and illnesses of people that I love who are unwilling and unable, even up until the very end, to accept that their illness is terminal. Having experienced this denial up close has made me feel strongly about acceptance. It isn’t that I wouldn’t fight for my life but I want to be aware of the process when I am dying so that I can come to the experience as a participant rather than an ambushed victim.</p>
<p>By the way, I really DO appreciate all of the wonderful perspectives people on CC have shared regarding hospice options and how it made making difficult decisions a bit easier (if that is at all possible), but do be aware that all hospices are NOT the same and just like any other health care provider, you need to do your research. Case in point:</p>
<p>[National</a> hospice company accused of fraud - Health - Health care - msnbc.com](<a href=“http://www.msnbc.msn.com/id/45877962/ns/health-health_care/#.TwaEvJhi6pE]National”>http://www.msnbc.msn.com/id/45877962/ns/health-health_care/#.TwaEvJhi6pE)</p>
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<p>At a conference I attended last month, a woman testified in tears that her beloved dad was hospitalized for two months and ran up a $250,000 bill of futile treatments for his very, very severe emphysema before she won her fight to get him discharged to hospice where he died within hours! It was very moving. </p>
<p>So much money is expended in the last weeks and months of many patients’ lives–what does it buy and could it be put to better use?</p>
<p>When you have a chronic, progressive condition like ALS, COPD and others, at what point does the patient even qualify for hospice? It’s often not clear. At what point should a patient stop cancer treatment? Who should decide? At what point should cost be a factor? These questions haunt our medical system & bioethicists.</p>
<p>I heard a man testify about how he had to battle all of his sibblings to honor his mother’s wishes and go against medical advice, telling the hospital to disconnect her so he could take her home with him and his father, so mom could die at home, surrounded by loved ones rather than in the sterile hospital. Tears flowed readily while he spoke of it. US hospitals & medical systems do not really deal well with end of life care.</p>
<p>I have a loved one in her 70s who is in a new round of chemo, again for cancer. We are not sure whether it will work this time or not; she went from a stage 4 to a stage 1 cancer with the initial chemo. She is trying to prepare for what may happen next and trying to be optimistic while preparing for what may come. None of us have enough information on what she really wants and we have all avoided the conversation.</p>
<p>Five Wishes [Aging</a> With Dignity Five Wishes](<a href=“http://www.agingwithdignity.org/five-wishes.php]Aging”>For Myself · Five Wishes) is one tool to help address some of these issues. It is not an easy conversation to start.</p>
<p>It would be so nice if we could have these conversations earlier in our lives, when everyone is healthy rather than waiting until people have serious terminal diagnoses. I have tried to start some of these conversations with my loved ones but have not found many willing to talk about it.</p>
<p>This subject was recently discussed in the NYT from a Dr.'s perspective. Fascinating reading.</p>
<p>[When</a> Doctors Face Death - NYTimes.com](<a href=“When Doctors Face Death - The New York Times”>When Doctors Face Death - The New York Times)</p>
<p>[url=<a href=“http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/]How”>http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/]How</a> Doctors Die Z</p>
<p>Why was my link to zocalopublicsquare in the OP deleted? It’s not a “private blog” – it’s funded by the California Healthcare Foundation and many other large donors. Many doctors and healthcare professionals write on it. It’s more professionally written than many local sources of news. What?</p>
<p>Removing that link removes the crux of my message.</p>
<p>^^^^</p>
<p>I scanned the whole thread to see if anyone else linked the article and was surprised that I didn’t see it. Now I know why.</p>
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<p>In your grandfather’s case, it wouldn’t have mattered if anyone said it was “okay to let him go” if he was able to decide that for himself (as it appeared he did) and he was healthy enough to live without being on life support. People who are competent and viable aren’t denied treatment simply because they turn 80, no matter if their relatives don’t want them alive anymore.</p>
<p>My grandmother recently died at the age of 96. She was pretty darn healthy until the very last few months. I would be very lucky to have that quality of life for so long.</p>
<p>Life experience has been very informative for me in regards to this question. Having seen a handful plus of people close to me navigate the end of their lives, some elders and some in midlife, it is not as abstract a question as it would have been even 15 years ago. In my observation, there is a process of decline in motion in situations where there might be actual choices to be made about how aggressive to be. When “fixing” one problem doesn’t solve other, equally critical issues, that tips my scale towards palliative care.</p>
<p>I have seen an early 50’s, otherwise healthy person take a long shot at highly aggressive and debilitating treatments, over the course of less than one year. The quality of life was severely diminished, but up to the end, family pressure was to test and try to fix. The image of this person, on a ventilator, minus 40 lbs. that they could ill afford to lose,with an imploring expression on their face is fixed in my memory. The spouse was not able to stop the seeking of answers. Less than one week later, the patient was able to ask to have the machine turned off. </p>
<p>I told my spouse that if I am dying, I will know it. Please talk to me about it, say goodbye, be real. There is a process to be respected at play and in many ways, it is a privilege to walk that walk with loved ones. For me, the denial would be the worst.</p>
<p>For some people, their mortality is an easy subject to broach, and for some other people, very difficult.</p>
<p>I have personally observed extremely old people who found it too painful and frightening to discuss their own future death even in a theoretical sense (before they had a terminal illness).</p>
<p>For others, it is not a touchy or difficult subject. I’m one of those–I find it interesting. I don’t know what makes one person resistant to discussions of death and other person not. It seems to be a personality characteristic.</p>
<p>Interesting.</p>
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<p>Yes, HiMom. This is why it is important to have regulations in place before the decision has to be made. People rant about death panels, but somebody has to make payment decisions. It is generally not over stopping cancer treatment, per se, but more often whether an experimental or controversial treatment should be initiated, like a bone-marrow transplant. It is much more problemmatic to stop an ongoing treatment than to refuse to pay for starting a treatment.</p>
<p>The patient should always be the one who decides whether to stop or continue treatment. Whether a third-party agrees to pay for the treatment is a separate question. Whether doctors and others agree with the the patient/family about the advisability of the requested treatment is a third question.</p>
<p>I agree it is not always clear when people qualify for hospice.</p>
<p>I totally agree with you travelnut. </p>
<p>My dad never said goodbye to my mother or my sister and he never allowed discussion of their soon to be passing cross their lips. He insisted they were both going to get better even when my mom was no longer recognizable because of her weight loss. That was decades ago and yet he did the same with my sister even though she died from the same disease as my mom and several other woman in our family. My dad cheated my mom and sister and he hurt them more than he could ever know. Their passing was the time for him to step up to the plate and put himself and his feeling in the place they belonged. Now at his age he still can’t discuss death. I find it sad that there will never be that time when we know what he wants or thinks or feels. He has kept that all to himself and thats where it will stay.</p>
<p>One of my dear friends couldn’t bear to say goodbye to her mom, who was terminally ill and receiving hospice in my friend’s home. She was hospitalized for yet another infection while my friend was on travel. She begged us to play music her mom in a coma would find comforting and play mom a tape from her, telling mom it was OK to go to heaven and be with her beloved husband. The mom did die while friend was away, holding the hand of friend’s secretary.</p>
<p>These issues are difficult, especially when the ill try valliantly to rally for the LOVED ONES when they are exhausted and just want a “good death.” I find it very selfish to not let a loved one go to the rest they yearn for while they are wracked with pain, but these are such emotional issues. It’s easy to be objective when it isn’t YOUR loved one.</p>