Over care VS undercare for Terminal Illnesses

[Kaleigh]

Lovely topic huh?? Well tonight I saw a show on the news about how many physicians are saying we are over treating terminal patients and that they are dying horrible deaths. Most physicians in the study would forgo much of the aggressive chemo when the stats are grim. But the public goes for all these radical treatments and die badly. The docs were saying dying today is a much harder process than ever and are more painful. Most docs said they themselves would not choose this treatment. It's not only hard for the patient but very hard for loved ones to witness. I think of my grandfather who faught bladder cancer and at 88 had his bladder removed. I knew it wasn't going to go well. BUT he wanted it and wanted my support. He was barely 100 pounds. How that urologist did that?? I have no lue. He said the death would be worse than the surgery. That surgery was the most excruitaing thing he has ever been though. I was very young and full time care giver. I could have said , enough.. I didn't.

If I was older and in great pain and prognosis wasn't looking too good. I would not fight it and try to enjoy the time I DO have left with family and friends. Pain free.

What are your thoughts??

My Illness isn't terminal but progressive. So I am not in any way thinking about myself in these terms. I am lucky, so far.....

But it's an interesting topic.

If you have older parents woould you want them to go through all the steps, surgery, Chemo and radiation if it gave them a limited time? Or would you hope they emjoyed the time they had left spent with dear family and friends??

 

[kenny]

I will take my own life when it becomes more bad than good.

Everyone can begin the grieving and healing process sooner, and a ton of money will not go down the drain.
Yeah, life is precious, blah blah blah, but not beyond a certain point.

 

[TooPatient]

Tough topic.

I think it depends. Each person and illness is different.

My grandmother died of cancer. It was awful watching her suffer through the treatments. She had multiple surgeries and was taking pills to treat side effects from other pills that had been used to tread side effects... Chunks of organs removed. All sorts of stuff. She knew that she wouldn't live through the cancer. It was terminal. We all knew it from the start.
She spent 6 years going through treatments as she got sicker and sicker. It could have been all done in 6 months. I've thought often about whether I would do that if I was in her situation. I really don't know. It was 6 years of suffering but she was able to spend lots of time with her family and clearly enjoyed most of it.

 

[Missy]

It depends on the quality of life. As in TooPatient's situation, her grandmother got to spend a lot more time with her loved ones and enjoyed doing so despite the suffering caused partly by the treatments to prolong her life. So the good outweighed the bad in that case. Each circumstance is different so one cannot really generalize. And that decision should be made by the person dealing with the illness (as long as their mind is intact) and not made by the family who may or may not want to prolong the pain and their loved ones life. A whole new question comes into play if that family member's mind is not fully functioning and that is a different topic.

It all comes down to (as many life decisions) does the positive outweigh the negative/does prolonging one's life in the face of a terminal painful illness outweigh the negative side effects/pain and suffering they will have to endure to do so.

Heart wrenching topic. And one many of us unfortunately have been through with a loved one.

 

[susimoo]

I will take my own life when it becomes more bad than good.

Everyone can begin the grieving and healing process sooner, and a ton of money will not go down the drain.
Yeah, life is precious, blah blah blah, but not beyond a certain point.

I am with Kenny. I and only I, will make the decision that this is the end, I will then end it in a way that I see fitting. I will be in control at the end, as much as I am in control today. Having watched those that I love hand the burden to doctors to decide, I hope I will have the strenght to take control, for myself.

Kaleigh, you are in my thoughts, always.

 

[ksinger]

Lovely topic huh?? Well tonight I saw a show on the news about how many physicians are saying we are over treating terminal patients and that they are dying horrible deaths. Most physicians in the study would forgo much of the aggressive chemo when the stats are grim. But the public goes for all these radical treatments and die badly. The docs were saying dying today is a much harder process than ever and are more painful. Most docs said they themselves would not choose this treatment. It's not only hard for the patient but very hard for loved ones to witness. I think of my grandfather who faught bladder cancer and at 88 had his bladder removed. I knew it wasn't going to go well. BUT he wanted it and wanted my support. He was barely 100 pounds. How that urologist did that?? I have no lue. He said the death would be worse than the surgery. That surgery was the most excruitaing thing he has ever been though. I was very young and full time care giver. I could have said , enough.. I didn't.

If I was older and in great pain and prognosis wasn't looking too good. I would not fight it and try to enjoy the time I DO have left with family and friends. Pain free.

What are your thoughts??

My Illness isn't terminal but progressive. So I am not in any way thinking about myself in these terms. I am lucky, so far.....

But it's an interesting topic.

If you have older parents woould you want them to go through all the steps, surgery, Chemo and radiation if it gave them a limited time? Or would you hope they emjoyed the time they had left spent with dear family and friends??

Yes, tough topic. Where to start?

Well for one, we need to have a public discussion of death. American culture in particular is very squeamish about it. We'll watch thousands killed in all sorts of creative ways in a movie, but when it comes to the real thing, we won't even acknowledge it exists.

As far as I'm concerned, the medical profession is at least as much to blame as the patient when terminal patients choose agressive chemo. When you combine their reluctance to tell people harsh truths about terminal conditions (and I have experienced this first-hand) and their oft-stated desire to avoid lawsuits, with people's natural fear of death and desire to believe there is a cure, this is what you get. I read an article not long ago about doctors not giving the same advice to patients that they would give to a family member. The doctors interviewed admitted as much, and said they were frequently more optimistic to the patient, and pushed treatments to them that they would neither choose for themselves nor a family member. The article suggested that you ask your doctor "Would you recommend this treatment to yourself/child/parent/spouse", to help focus them on giving the same advice they would give to someone near and dear. (looked for the piece but couldn't find it. )

And then of course, there is the REALLY unpleasant-to-ponder issue of healthcare as a consumable good. Like any other good, it is not unlimited, so how best to allocate it? Right now, we ration healthcare based on one's ability to pay. The reason we do that is we REALLY don't want to discuss how to allocate it based on sticky criteria like cost/benefit to society. When we have our noses thrust directly into that incredibly difficult moral quagmire, we run screaming straight back to the fiction of "the market will decide", because markets are magic and outside us and absolve us from having to deal with the moral implications. Except for the fact that markets are not magic, they are human constructs and are NOT ethics-free. But we can delude ourselves - and DO - that they are.

I ponder all this - end of life treatments, or the cost of treating serious chronic conditions - a lot actually. My mother died of ALS, so while it was ghastly, it was pretty impossible for the medical profession to give us any false hope in her case - that disease is an implacable and brutal death sentence, but it spared everyone from having to make those incredibly difficult "is it worth it" choices.

I confess I had MY moment of grasping at anything. I wanted so not to believe it was ALS, that I insisted that the doc rule out myasthenia gravis. I could tell he thought I was grasping at anything, but he did the test anyway. Anyway, my mom resolutely chose to NOT have a feeding tube and prolong her life in any way (they kept telling her it would NOT prolong her life and would just make her more comfortable, but that really WAS a lie and neither she nor I believed that - it WOULD have prolonged her life, in the worst possible way), although she fought hard to live as fully as possible right up to the end.

I also have a friend who, over the course of a lifetime, made his diabetes worse (LONG story), and subsequently lost his kidney function and is now on dialysis for the rest of his life. It is costly to him and perhaps to society (he is still working full-time though, incredibly, and has been for over 2 years now). Many would probably say, he made bad choices and if we ration care, he should be out, but I balk at that calculus, like everyone else. Trust me when I say this man is worth every penny to those who know him - he is universally adored by his many many friends.

Anyway, I realize I've wandered afar a bit. But you can't ponder over-treatment without addressing the larger issues too.

 

[MissGotRocks]

Lovely topic huh?? Well tonight I saw a show on the news about how many physicians are saying we are over treating terminal patients and that they are dying horrible deaths. Most physicians in the study would forgo much of the aggressive chemo when the stats are grim. But the public goes for all these radical treatments and die badly. The docs were saying dying today is a much harder process than ever and are more painful. Most docs said they themselves would not choose this treatment. It's not only hard for the patient but very hard for loved ones to witness. I think of my grandfather who faught bladder cancer and at 88 had his bladder removed. I knew it wasn't going to go well. BUT he wanted it and wanted my support. He was barely 100 pounds. How that urologist did that?? I have no lue. He said the death would be worse than the surgery. That surgery was the most excruitaing thing he has ever been though. I was very young and full time care giver. I could have said , enough.. I didn't.

If I was older and in great pain and prognosis wasn't looking too good. I would not fight it and try to enjoy the time I DO have left with family and friends. Pain free.

What are your thoughts??

My Illness isn't terminal but progressive. So I am not in any way thinking about myself in these terms. I am lucky, so far.....

But it's an interesting topic.

If you have older parents woould you want them to go through all the steps, surgery, Chemo and radiation if it gave them a limited time? Or would you hope they emjoyed the time they had left spent with dear family and friends??

Yes, tough topic. Where to start?

Well for one, we need to have a public discussion of death. American culture in particular is very squeamish about it. We'll watch thousands killed in all sorts of creative ways in a movie, but when it comes to the real thing, we won't even acknowledge it exists.

As far as I'm concerned, the medical profession is at least as much to blame as the patient when terminal patients choose agressive chemo. When you combine their reluctance to tell people harsh truths about terminal conditions (and I have experienced this first-hand) and their oft-stated desire to avoid lawsuits, with people's natural fear of death and desire to believe there is a cure, this is what you get. I read an article not long ago about doctors not giving the same advice to patients that they would give to a family member. The doctors interviewed admitted as much, and said they were frequently more optimistic to the patient, and pushed treatments to them that they would neither choose for themselves nor a family member. The article suggested that you ask your doctor "Would you recommend this treatment to yourself/child/parent/spouse", to help focus them on giving the same advice they would give to someone near and dear. (looked for the piece but couldn't find it. )
And then of course, there is the REALLY unpleasant-to-ponder issue of healthcare as a consumable good. Like any other good, it is not unlimited, so how best to allocate it? Right now, we ration healthcare based on one's ability to pay. The reason we do that is we REALLY don't want to discuss how to allocate it based on sticky criteria like cost/benefit to society. When we have our noses thrust directly into that incredibly difficult moral quagmire, we run screaming straight back to the fiction of "the market will decide", because markets are magic and outside us and absolve us from having to deal with the moral implications. Except for the fact that markets are not magic, they are human constructs and are NOT ethics-free. But we can delude ourselves - and DO - that they are.

I ponder all this - end of life treatments, or the cost of treating serious chronic conditions - a lot actually. My mother died of ALS, so while it was ghastly, it was pretty impossible for the medical profession to give us any false hope in her case - that disease is an implacable and brutal death sentence, but it spared everyone from having to make those incredibly difficult "is it worth it" choices.

I confess I had MY moment of grasping at anything. I wanted so not to believe it was ALS, that I insisted that the doc rule out myasthenia gravis. I could tell he thought I was grasping at anything, but he did the test anyway. Anyway, my mom resolutely chose to NOT have a feeding tube and prolong her life in any way (they kept telling her it would NOT prolong her life and would just make her more comfortable, but that really WAS a lie and neither she nor I believed that - it WOULD have prolonged her life, in the worst possible way), although she fought hard to live as fully as possible right up to the end.

I also have a friend who, over the course of a lifetime, made his diabetes worse (LONG story), and subsequently lost his kidney function and is now on dialysis for the rest of his life. It is costly to him and perhaps to society (he is still working full-time though, incredibly, and has been for over 2 years now). Many would probably say, he made bad choices and if we ration care, he should be out, but I balk at that calculus, like everyone else. Trust me when I say this man is worth every penny to those who know him - he is universally adored by his many many friends.

Anyway, I realize I've wandered afar a bit. But you can't ponder over-treatment without addressing the larger issues too.

I could not agree with this more and this too has been my experience. There are no Dr. Welby's anymore - they are simply too afraid to state their opinions. Options are presented even with the knowledge that they would not prolong life in a meaningful or worthwhile way. You and your loved ones are left to sort through the facts on your own. Most of the deaths closest to me were not from cancer so there were not decisions to be made based on treatments. My stepfather was in a rehab facility that included a whole FLOOR of mostly elderly men that had been brought back from the brink of death through heart failure or stroke. They were saved but hooked up to respirators, feeding tubes and the like. They truly could not live and could not die - save another organ system to fail. It was shocking to me as I never realized the sheer numbers of people in these situations. A living will made by any one of those souls would have made a huge difference in the treatment they received. My stepfather was offered the option of making a living will before his bypass surgery but it was not discussed in detail and I think in his mind it was giving a death license to a physician. He declined. I hope that in years to come, physicians will discuss living wills in depth with their patients providing them with real life situations in which they could make an informed decision about their lives and their deaths. Death is not viewed as a part of life anymore IMO - it is viewed as something that should be prevented as long as medically possible. There are so many situations where a patient and family could make a decision to be comfortable and pain free instead of choosing grueling treatments and care - if they had the facts and education to make those choices. It was also mind boggling to remember that this was but one facility - play the numbers out in many facilities all over the country. The cost of their care was astronomical to private citizens, insurance companies and Medicaid. None of them - and I mean none - had any reasonable reason to believe that they would be returned to a life that would be enjoyable. Their minds soon followed their bodies in failure - it was one of the most gut wrenching experiences of my life. My stepfather lived like this for two more years. His children had wanted him to have a chance to recover but once hooked up, could not make the choice to end the life support systems. I often wept for him with so much frustration - he would not have wanted that outcome for his life.

While none of us will know what the final outcomes of our lives will be, I strongly encourage everyone to give thought to what they would or would not want done for them. No one wants to give up on hope but if the hope isn't based on a reasonable expectation of a quality life, I personally see no point. My personal opinion of trying to hold on to loved ones by unreasonable means is just cruel and selfish. I would not want my children to go through the long battle with me for little gain. Living as long and fully as you can is just; making peace with your own demise is just a core value.

 

[lulu]

I lost my mom to breast cancer and my brother, a year ago, at 62, to a rare and aggressive sarcoma. They both opted for all the radiation and chemo. It was heartbreaking to watch. I would say that treatment bought each of them a couple good months and then it was all downhill. In the last month my brother was just a shell of a person.

I believe everyone should have the option to painlessly end their own life when they are terminally ill.

 

[HollyS]

While I believe it is an individual choice . . .

I would not choose to prolong my life if there was no hope of a recovery, or the treatment would take time away from my family and be worse than simply allowing the end to come naturally.

I would encourage my family members to do the same.

Yes, miracles happen. But, they can happen without invasive and painful treatments meant to add days and weeks, but not capable of a cure.

I had a friend (in her seventies) who, after battling cancer in various forms over a number of years, decided the time had come to die with dignity at home. She left this life surrounded by family and friends, singing hymns and rejoicing that she would be 'ultimately healed' when she 'went home' to God.

I can't think of a better way to go. Except maybe my Dad's way - - just keel over and leave this earth with a huge smile on your face because you're liking what you see on the other side of the veil.

 

[wildcat03]

Read this: Why Doctors Die Differently.

Having cared for many many dying patients over the years, and having had extensive discussions with other physicians about the dying process, every word of this article rings true.

 

[ksinger]

Lovely topic huh?? Well tonight I saw a show on the news about how many physicians are saying we are over treating terminal patients and that they are dying horrible deaths. Most physicians in the study would forgo much of the aggressive chemo when the stats are grim. But the public goes for all these radical treatments and die badly. The docs were saying dying today is a much harder process than ever and are more painful. Most docs said they themselves would not choose this treatment. It's not only hard for the patient but very hard for loved ones to witness. I think of my grandfather who faught bladder cancer and at 88 had his bladder removed. I knew it wasn't going to go well. BUT he wanted it and wanted my support. He was barely 100 pounds. How that urologist did that?? I have no lue. He said the death would be worse than the surgery. That surgery was the most excruitaing thing he has ever been though. I was very young and full time care giver. I could have said , enough.. I didn't.

If I was older and in great pain and prognosis wasn't looking too good. I would not fight it and try to enjoy the time I DO have left with family and friends. Pain free.

What are your thoughts??

My Illness isn't terminal but progressive. So I am not in any way thinking about myself in these terms. I am lucky, so far.....

But it's an interesting topic.

If you have older parents woould you want them to go through all the steps, surgery, Chemo and radiation if it gave them a limited time? Or would you hope they emjoyed the time they had left spent with dear family and friends??

Yes, tough topic. Where to start?

Well for one, we need to have a public discussion of death. American culture in particular is very squeamish about it. We'll watch thousands killed in all sorts of creative ways in a movie, but when it comes to the real thing, we won't even acknowledge it exists.

As far as I'm concerned, the medical profession is at least as much to blame as the patient when terminal patients choose agressive chemo. When you combine their reluctance to tell people harsh truths about terminal conditions (and I have experienced this first-hand) and their oft-stated desire to avoid lawsuits, with people's natural fear of death and desire to believe there is a cure, this is what you get. I read an article not long ago about doctors not giving the same advice to patients that they would give to a family member. The doctors interviewed admitted as much, and said they were frequently more optimistic to the patient, and pushed treatments to them that they would neither choose for themselves nor a family member. The article suggested that you ask your doctor "Would you recommend this treatment to yourself/child/parent/spouse", to help focus them on giving the same advice they would give to someone near and dear. (looked for the piece but couldn't find it. )
And then of course, there is the REALLY unpleasant-to-ponder issue of healthcare as a consumable good. Like any other good, it is not unlimited, so how best to allocate it? Right now, we ration healthcare based on one's ability to pay. The reason we do that is we REALLY don't want to discuss how to allocate it based on sticky criteria like cost/benefit to society. When we have our noses thrust directly into that incredibly difficult moral quagmire, we run screaming straight back to the fiction of "the market will decide", because markets are magic and outside us and absolve us from having to deal with the moral implications. Except for the fact that markets are not magic, they are human constructs and are NOT ethics-free. But we can delude ourselves - and DO - that they are.

I ponder all this - end of life treatments, or the cost of treating serious chronic conditions - a lot actually. My mother died of ALS, so while it was ghastly, it was pretty impossible for the medical profession to give us any false hope in her case - that disease is an implacable and brutal death sentence, but it spared everyone from having to make those incredibly difficult "is it worth it" choices.

I confess I had MY moment of grasping at anything. I wanted so not to believe it was ALS, that I insisted that the doc rule out myasthenia gravis. I could tell he thought I was grasping at anything, but he did the test anyway. Anyway, my mom resolutely chose to NOT have a feeding tube and prolong her life in any way (they kept telling her it would NOT prolong her life and would just make her more comfortable, but that really WAS a lie and neither she nor I believed that - it WOULD have prolonged her life, in the worst possible way), although she fought hard to live as fully as possible right up to the end.

I also have a friend who, over the course of a lifetime, made his diabetes worse (LONG story), and subsequently lost his kidney function and is now on dialysis for the rest of his life. It is costly to him and perhaps to society (he is still working full-time though, incredibly, and has been for over 2 years now). Many would probably say, he made bad choices and if we ration care, he should be out, but I balk at that calculus, like everyone else. Trust me when I say this man is worth every penny to those who know him - he is universally adored by his many many friends.

Anyway, I realize I've wandered afar a bit. But you can't ponder over-treatment without addressing the larger issues too.

I could not agree with this more and this too has been my experience. There are no Dr. Welby's anymore - they are simply too afraid to state their opinions. Options are presented even with the knowledge that they would not prolong life in a meaningful or worthwhile way. You and your loved ones are left to sort through the facts on your own. Most of the deaths closest to me were not from cancer so there were not decisions to be made based on treatments. My stepfather was in a rehab facility that included a whole FLOOR of mostly elderly men that had been brought back from the brink of death through heart failure or stroke. They were saved but hooked up to respirators, feeding tubes and the like. They truly could not live and could not die - save another organ system to fail. It was shocking to me as I never realized the sheer numbers of people in these situations. A living will made by any one of those souls would have made a huge difference in the treatment they received. My stepfather was offered the option of making a living will before his bypass surgery but it was not discussed in detail and I think in his mind it was giving a death license to a physician. He declined. I hope that in years to come, physicians will discuss living wills in depth with their patients providing them with real life situations in which they could make an informed decision about their lives and their deaths. Death is not viewed as a part of life anymore IMO - it is viewed as something that should be prevented as long as medically possible. There are so many situations where a patient and family could make a decision to be comfortable and pain free instead of choosing grueling treatments and care - if they had the facts and education to make those choices. It was also mind boggling to remember that this was but one facility - play the numbers out in many facilities all over the country. The cost of their care was astronomical to private citizens, insurance companies and Medicaid. None of them - and I mean none - had any reasonable reason to believe that they would be returned to a life that would be enjoyable. Their minds soon followed their bodies in failure - it was one of the most gut wrenching experiences of my life. My stepfather lived like this for two more years. His children had wanted him to have a chance to recover but once hooked up, could not make the choice to end the life support systems. I often wept for him with so much frustration - he would not have wanted that outcome for his life.

While none of us will know what the final outcomes of our lives will be, I strongly encourage everyone to give thought to what they would or would not want done for them. No one wants to give up on hope but if the hope isn't based on a reasonable expectation of a quality life, I personally see no point. My personal opinion of trying to hold on to loved ones by unreasonable means is just cruel and selfish. I would not want my children to go through the long battle with me for little gain. Living as long and fully as you can is just; making peace with your own demise is just a core value.

And here's a kicker: in MY state, doctors ignore DNRs if a single family member objects to taking Great Aunt Mildred off of life support. So even they are aren't proof against living death.

You know, without discussing the whole "death panel" flap too much, the reactions of many to that pretty much nailed the reasons why we have such an incredibly difficult time discussing death. (excerpted below from Wikipedia, bolded mine)

Bioethicist George Annas wrote that America has a "death denying culture that cannot accept death as anything but defeat." We will "prepare for any and every disease and screen for every possible 'risk factor', but we are utterly unable to prepare for death." Annas commended and quoted Boston Globe columnist Ellen Goodman, who wrote "I think that what our [healthcare] system may need is not more intervention, but more conversation, especially on the delicate subject of dying ... More expensive care is not always better care. Doing everything can be the wrong thing." However, Annas said mythical "death panels" blocked exploring these issues, appearing to affirm Ivan Illich's 1975 Medical Nemesis, when he said " 'ocially approved death happens when man [sic] has become useless not only as a producer but also as a consumer. It is at this point that [the patient] ... must be written off as a total loss'."[45]

Health economist James C. Robinson said the debate over "death panels" showed how willing the public was "to believe the worst about perceived governmental interference with individual choices."[46] Historian Jill Lepore characterized "death panels" as a conspiracy theory that is believed by a minority of the U.S. population and is based on fears that the federal government is conspiring to kill off its weakest members. Of the reform effort, Lepore said it was an "unwelcome reminder of a dreaded truth: death comes to us all"; of the uproar, Lepore said it rallied a party base against death, and was a "savvy" tactic". Lepore also said Obama was "catastrophically outmaneuvered" by the spread of the death panel rumors.[47] Johnathan Oberlander, a professor of health policy, said the Obama administration was "seemingly unprepared for the intense opposition and fury that erupted during town-hall meetings in the summer of 2009."[48] Political scientist James Morone said the term death panel played a role in the Democrats' loss of control over the public debate because they did not address the "underlying fears of big government". Morone called the "death panel" arguments "pungent, memorable, simple, and effective."[49]

Brent J. Pawlecki, a corporate medical director, said the phrases "death panels" and "killing Grandma" were "used to fuel the flames of fear and opposition".[50][51] Gail Wilensky, a health adviser to President George H.W. Bush and John McCain who has overseen Medicare and Medicaid, said the charge was untrue and upsetting, adding that "[t]here are serious questions that are associated with policy aspects of the health care reform bills that we're seeing ... And there's frustration because so much of the discussion is around issues like the death panels and [Ezekiel Emanuel] that I think are red herrings at best."[15][52] Susan Dentzer, editor of Health Affairs, said Congress' approval of $1.1 billion for comparative effectiveness research in the 2009 stimulus contributed to fear the research would "lead to government rationing" which "fueled the 'death panels' fury of summer 2009."[53]

Media
The Economist said the phrase was used as an "outrageous allegation" to confront politicians at town hall meetings during the August 2009 congressional recess.[54] The New York Times said the term became a standard slogan among many conservatives opposed to the Obama administration’s health care overhaul.[22] Former Newsweek editor Jon Meacham said it was "a lie crafted to foment opposition to the president's push for reform"[55] and Fox News analyst Juan Williams said "of course there is no such thing as any death panel."[56] The Christian Science Monitor reported that some Republicans used the term as a "jumping-off point" to discuss government rationing of health care services, while some liberal groups applied the term to private health insurance companies.[57] Journalist Paul Waldman of The American Prospect called the "death panel" charge a consequential policy lie, a falsehood about a policy that had definite effects on the policy, a type of lie that is not as condemned in the media as personal lies.[58]

The Daily Telegraph noted that some critics of the U.S. reform used the United Kingdom's National Institute for Health and Clinical Excellence (NICE)—"as an example of [doing] the sort of drug rationing that amounted to a 'death panel'". NICE, as one of its functions, uses cost-effectiveness analysis to determine whether new treatments and drugs should be available to those covered by Britain's National Health Service.[59] The Sunday Times wrote that Sarah Palin's use of the "death panels" term was a reference to NICE.[60]

Physicians
C. Porter Storey Jr. said the term represents fear that due to financial pressure "some mechanical, governmental method will be used to determine how much of our scarce health care resources will be applied to their situation."[61] Atul Gawande, a surgeon and writer, said that fear of missing out on an expensive life-extending treatment is behind the phrase, but he thought that framing the issue in this way was completely mistaken. "[T]he trouble is not whether we're going to offer a $100,000 drug to help someone get 3 or 4 months"; our big trouble is that patients receive a $100,000 drug that not only yields no benefit—it also causes major side effects that shortens their lives", he said.[62] Gawande said doctor's schedules of 20 minute appointments, a lack of payments and the emotional difficulty of conversations about mortality were barriers to the doctor-patient discussions about end-of-life care issues, which can take about an hour.[63]

Geriatric psychiatrist Paul Kettl said his experience in a geriatric unit showed end-of-life discussions and reimbursements were "desperately needed" as these hour long conversations are "ignored in the crush of medication and disease management."[64] In the Journal of the American Medical Association, Kettl wrote he was in favor of the "death panels that were originally proposed ... periodic discussions about advance directives that Medicare would pay for as medical visits."[64] Kettl noted that the attention-catching phrase "death panels" became "a lightning rod for objections to a series of ideas about health care besides" end-of-life discussions, and that somehow, "the concept of physicians being paid for time to talk with patients and their families about advance directives ... generated into the fear of decisions about life and death being controlled by the government."[64] Kettl also wrote that, "We can expect more good medical ideas to be destroyed by sound bytes and needless concerns that will be exaggerated. It makes for good television, but bad medicine."[64]

(end excerpt)

As for the expensive (mostly ineffective) life-extending treatment, well, when my mom saw the neurologist - the one who was too cowardly to tell her what his actual diagnosis was - he gave her a prescription for "weakness". When I checked the drug, I nearly had a heart attack. At the time, it was $900 a month. Of course, I immediately was indignant and was like, "There's GOT to be a generic for this thing!!" How wrong I was. That drug was and is the ONLY drug ever approved for ALS, and it extends life (with no reference to QUALITY) an average of 3 MONTHS. Lessee, first, what is the chance that he is prescribing a $900/month drug for an off-label use? Zero. Honestly, I'm not sure her insurance would have covered it anyway. But THAT is how I had to find out she had ALS, and I had to hold his feet to the fire to get him to actually give her the diagnosis. As you might imagine I was not pleased with him about that. She opted NOT to take the med, when she was told the truth about her condition and the drug's effectivenss. She said, and I quote, "That's just stupid." Mom: bone-practical to the end. Bravest person I've ever known.

 

[HollyS]

Oh, and the medical profession tries everything, and does all that a patient or family ask - - for a reason.

Malpractice lawsuits.

Tort reform is the ONLY way to cut medical costs. Euthanizing or allowing patients to die is not the answer. Informed choices, presented by doctors not afraid of telling the truth, and families not poised to sue them because they can - - that's the answer.

 

[decodelighted]

I believe everyone should have the option to painlessly end their own life when they are terminally ill.

+1

 

[smitcompton]

Hi,

There was a TV show on PBS this past week that tried to deal with some of these issues. As was stressed in the program by Drs. is that the conclusion that health care wuill be rationed would not occur if, in fact, we had the outcomes of these treatments documented.
According to this program we are indeed over treating and prolonging life unnecessarily. However, we must DOCUMENT certain treatment plans so we can assess the outcomes, thus having a more ratioanal system than "the standard of care" rational. Hospitals, even when required by law to keep certain records, still hold back information.

The examples used were from a Los Angeles facility vs one in Utah. The used prostate cancer, C-sections and terminally ill patients with markedly different outcomes from different forms of care. Quite an eye opener and excellent ideas. Utah did a great job .

Medicare recently stopped all surgeries on a condition in the brain for people over the age of 70. The surgery almost always resulted in death.(I don't recall the exact name ).

I believe outcomes of treatment plans, including end of life do not mean death squads at all. It means we will use evidence supported by facts to reduce costs and improve quality of life.

There was a elderly woman laying in a coma for several yrs, without any hope of recovery, at a cost of 5 million dollars, that her son refused to take off of life support. "Mama wouldn't want to go." he says.


There comes a time, for me , that I have told my son to let me go. I would never want to be that woman.


Thanks,

Annette

 

[monarch64]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its ass. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

 

[wildcat03]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

If your father has a good quality of life and is able to enjoy it with the people he loves, then I don't think I would call him overtreated. Yes, he had a rough go of treatment, but it sounds like the results were wonderful. Not everyone would have the strength to go through what he did.

 

[Skippy123]

someone posted this thread in PS called "How Doctors Die" I found it eye opening and probably how I feel. I rather not be getting so much medical intervention when I should not be living. I mean I want to live but I think after having my boys so premature it has really made me rethink all the living vs dying. [URL='https://www.pricescope.com/community/threads/how-doctors-die.169534/#post-3083981#p3083981']https://www.pricescope.com/community/threads/how-doctors-die.169534/#post-3083981#p3083981[/URL]

 

[mimi72]

I second the article recommended by wildcat.

Monarch's example is what keeps docs offering treatment, and what keeps patients accepting it. 5 year survival of stage 4 colon cancer is 6-8% That means 92-94% of patients will be dead in 5 years. How many patients are we as society willing to treat in order to save 6%? AND, let's say the outcome wasn't as positive. Let's say Monarch's dad survived but ended up in a nursing home, bedbound, and with a feeding tube after all the treatment. Is that ok? What's a life worth? Who gets to decide what quality of life is acceptable and what isn't? Well, the patient does, or their family if they are unable to make decisions for themselves. What makes it more complicated is that many people making the decisions to continue treatment for family members far beyond what most of us consider would be an acceptable quality of life, are contributing ZERO to the cost of their healthcare. They say keep my dad alive, my goal is a heartbeat, and physicians are bound to keep providing care to meet that goal. Because a physician's duty is to the patient, we are not ethically able to consider what is right for society when it comes to the care decisions of an individual patient. Society must make those decisions and set those constraints. So far we haven't been willing to tackle those hard issues. Evidence: the most benign of provisions, a proposal to reimburse physicians for the time they spend DISCUSSING and documenting end of life preferences with patients, gets turned into "death panels". Removed from healthcare reforms as too controversial. Don't get me started.

The solution is to make darn sure your family knows what quality of life you would find acceptable or not acceptable. Is a feeding tube ok if you have advanced dementia? Permanent nursing home care? Maybe a retirement community is ok as long as you are still able to enjoy activities, but no more when you are bedbound and nonverbal? How about life permanently on a ventilator? It could be as simple as "continue aggressive treatment as long as I recognize my loved ones and can have a book read to me. If that is no longer possible, keep me comfortable, clean and dry until nature takes it course."

And whoever posted earlier is absolutely correct...Living Wills/Healthcare Powers of Attorney are only as helpful as the people you have making decisions for you when you are not able to any longer. Make sure you talk to those people about what you want. Saying you will find a way to end your life on your terms sounds nice but in reality most people's last phase of life isn't so clean. Most people nearing the end are not only physically but also intermittantly mentally debilitated. Chances are you won't just be able to bring about a swift end, you'll need your loved ones on your side who know your wishes very clearly.

As far as doctors not being up front and honest...it happens. Some docs are optimists and sugar coat everything, but some are realists. But the end of one's life usually there are enough treating physicians around that you can find someone to give a straight answer. Remember - you have to be willing to hear the hard truth. The question to ask is "where do you see me [my loved one] in 3 months?" If you have a life-limiting disease and are struggling with these issues, ask to be seen by a Palliative Medicine physician.

I recommend the tools on this site: theconversationproject.org

 

[mimi72]

http://theconversationproject.org/

 

[isaku5]

I believe everyone should have the option to painlessly end their own life when they are terminally ill.

+1

Amen to that ,deco.

Having been diagnosed with an aggressive form of breast cancer recently, I was informed of the regimen of treatments that might, just might, give me more time. Why put off the inevitable? If I were younger and had children to raise, it would have been a much more difficult decision. Now, however, no one depends on me. I already have pre-existing conditions which have changed my lifestyle completely.

I did have the tumour removed and that's as far as I'm willing to go. I have discussed my choice with our kids and my close friends. If anyone asks a question, I'll answer truthfully; otherwise, it will be kept quiet (not out of shame, though!).

I intend to enjoy the time I have left and have made sure that I have a DNR on file with my primary physician and the hospital. I also intend to find out more about the palliative care available in our town.

That's it, folks!

 

[Tacori E-ring]

I believe everyone should have the option to painlessly end their own life when they are terminally ill.

+1

Ditto. Free will is a wonderful thing.

 

[wildcat03]

http://theconversationproject.org/

Thanks for posting this.

Just as a side note, the "death panels" that were removed from the Affordable Care Act ("Obamacare") were not actually anything close to death panels. They were a provision that would provide reimbursement to physicians who counseled Medicare patients regarding living wills, advance directives, and end-of-life care.

 

[HollyS]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

Your dad is one tough guy! I'm glad you've had these extra years with him.

 

[iLander]

I will take my own life when it becomes more bad than good.

Everyone can begin the grieving and healing process sooner, and a ton of money will not go down the drain.
Yeah, life is precious, blah blah blah, but not beyond a certain point.

I am with Kenny. I and only I, will make the decision that this is the end, I will then end it in a way that I see fitting. I will be in control at the end, as much as I am in control today. Having watched those that I love hand the burden to doctors to decide, I hope I will have the strenght to take control, for myself.

Kaleigh, you are in my thoughts, always.

Man plans, and God laughs . . . It's easy to say, but usually it doesn't work out that way.

My aunt's father was a member of the hemlock society, a renowned physician, etc. He was ready to "unburden his family when the time came". Dementia hit him fast and hard, and he couldn't remember the hemlock society pills, much less find them, when the time came.

Your only hope to gain control over your own death is to relinquish control to loved ones. Sign a power of attorney, sign a do not resuscitate order, sign a donor card. Then give copies to as many family members as you can.

I am hoping to be walking across the room, then hit the floor, BAM! Something like death by tequila.

 

[aljdewey]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

If your father has a good quality of life and is able to enjoy it with the people he loves, then I don't think I would call him overtreated. Yes, he had a rough go of treatment, but it sounds like the results were wonderful. Not everyone would have the strength to go through what he did.

It's all well and good to deign a treatment as "not overtreated" based on results, but none of us are guaranteed an outcome at the front end, right? If Monnie's dad wanted to fight, his choice should be honored regardless of the outcome. If he hadn't wanted to, that should be honored regardless of outcome too.

I think that everyone should be able to choose exactly how much treatment they want - regardless of what others would do. I personally wouldn't want to go through much of it and would probably choose not to opt for heroic treatment, but I know my husband feels differently and I respect his right to choose what he wants the same as I expect him to respect my wishes - regardless of outcome.

If there were one change I'd like to see, it would be that at a certain age (50? 55? something else?), we'd all have to declare our wishes as part of renewing our drivers' licenses, including declaring a healthcare proxy. People don't often think about it until faced with a situation, and sometimes, that's just too late. Requiring people to designate a proxy and to declare their wishes as part of their renewals would at least prompt discussions that many otherwise wouldn't have and save everyone else a lot of time and money fighting over what Grandpa really would have wanted.

 

[MichelleCarmen]

My dad was dx w/cancer when he was very young, hence, I was very young too. His form of cancer was extremely aggressive and he died six months after we found out. It would have been nice if we had done things differently, but my dad was in his early 30s so I guess a person is more willing to be spending days throwing up from chemo hoping that the prognosis is wrong.

The other day, I was talking to an older relative and that person said that it's better to go out with dignitity then start having organs removed to delay the process.

 

[tuffyluvr]

One of the Anthro classes I took in University was on death and dying, and it was fascinating. Basically the broad outline of the course was that death and dying have become "taboo" in American culture and the norm has become trying to fight it at all costs when, in reality, death is just a part of life. I like the Native American perspective of death: http://www.humanehealthcare.com/Article.asp?art_id=632

One of my closest friends is a nurse, and the area she chose to focus on is oncology. She went back to school to get her masters and Nurse Practitioners license and she decided that she wanted to focus on palliative care/hospice because she feels that it's really important that we become more accepting of the process of end of life care. She sees so many people who are terminal, yet they are fighting it and end up feeling terrible at the end of their illness and, when the time comes, they are not only in terrible pain with very little quality of life, they are also totally unprepared to make the final transition. I am so proud of her for following what she believes in and trying to make pallitive care and hospice a more prominant and accepted option for those who are terminally ill. She has met a lot of resistance and people often go as far as asking her what she does and when she tells them, replying "ew!" or "why would you want to do that?!?"

I strongly feel that many cultures need to be more accepting of the process of dying, and the taboo of death and dying needs to become obsolete. Terminally ill patients deserve to enjoy their last months and weeks of life, rather than feeling like they can change the outcome if they only fight harder, try a different treatment, drug or surgery. Sometimes no matter what measures are taken and how hard the patient fights the result will be the same, but they might feel that they are giving up, or they owe it to their family to keep trying if doctors continue to present them with treatment options. I feel they should have a trained expert help patient and their family come to terms with the inevitable, help them prepare and remain comfortable.

 

[tuffyluvr]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

Your dad sounds like a very strong person, and I am so glad to hear that you have had all these wonderful years after his illness. However, it doesn't sound to me that he was "overtreated". It sounds like he had some very harsh and aggressive treatments, but he had the determination to fight and I wouldn't say he was "overtreated". Stage IV cancer is very serious, but it's not terminal. I think that overtreatment would involve aggressive treatments that are done in an attempt to prolong the life of someone who had been diagnosed as terminal.

I also feel like your dad's resolution and determination to get better are a large part of why he got better. Someone who was emotionally weaker very well may not have survived such a diagnosis. I think a large part of the outcome of an illness lies within the patient: their attitude, desire to get better and ability to visualize themself healthy again.

 

[ksinger]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

Your dad sounds like a very strong person, and I am so glad to hear that you have had all these wonderful years after his illness. However, it doesn't sound to me that he was "overtreated". It sounds like he had some very harsh and aggressive treatments, but he had the determination to fight and I wouldn't say he was "overtreated". Stage IV cancer is very serious, but it's not terminal. I think that overtreatment would involve aggressive treatments that are done in an attempt to prolong the life of someone who had been diagnosed as terminal.

I also feel like your dad's resolution and determination to get better are a large part of why he got better. Someone who was emotionally weaker very well may not have survived such a diagnosis. I think a large part of the outcome of an illness lies within the patient: their attitude, desire to get better and ability to visualize themself healthy again.

At the risk of sounding as if I'm denigrating anyone's family member's determination and grit - and I'm NOT, it is that attitude that is precisely why people feel like they SHOULD be doing more, and feel massively guilty, and is very judgemental of those who DON'T get better and die in spite of an iron will and struggling and desiring and visualizing mightily, because that IS the subtext of your statement - that a person's will is the final determining factor. It isn't. It is the determining factor in HOW one lives, not how long or WHETHER one lives.

I guarantee, if you're ever diagnosed with cancer, no matter what stage or what kind, the first thing that will go through your mind (irrationally and involuntarily) is, "What did I DO wrong??" because we're subtly taught that we are in control of our health, that if only we DO the right things everything will be fine. But beyond a certain point, we are not in control.

 

[partgypsy]

Wow I am working with palliative care researchers, and I am surprised of the level of awareness people have about this situation. Now maybe that is because the posters are over all more educated, read, than average population.

There are a number of reasons for this. Malpractice is only one. Doctors have been trained to heal, but often not to have these kind of hard conversations with both patients and their family.
Doctors are trained to feel if they cannot offer another treatment, they have failed/given up, and so offer treatments with little chance of prolonging life even if it means reduction in quality of life.
On the patient and family side, sometimes the patient doesn't want to hear what the doctor is saying, and the doctor may couch it in terms that still give the patient some hope. Sometimes the patient hears, and is even saying, "I want to go", but the family will not accept this, and overturn the patient's wishes.
also, there are (cultural) differences by race and religion in preferences for treatments that that offer any chance for prolonging life, over emphasizing quality of life.

Yes looking at other countries it seems in general Americans are much less comfortable with death or talking about it, and are more likely to believe medical sciences can cure anything.