Said Dr. Alvin H. Moss, chairman of the Coalition for Supportive Care of Kidney Patients, quoted in "Learning to Say No to Dialysis."
Do older people with advancing kidney disease really intend to sign up for all this? If they hope to reach a particular milestone — a great-grandchild’s birth, say — or value survival above all, perhaps so. But many express ambivalence....Oh, you "older people," you need to learn... and the
[O]lder patients may not fully grasp what lies ahead. When they decide to discontinue dialysis, Dr. Moss said, “patients say to me, ‘Doc, it’s not that I want to die, but I don’t want to keep living like this.’”
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41 comments:
Is "supportive care" a euphemism? It's...
"Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of supportive care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, palliative care, and symptom management."
"Care" itself is a euphemism, isn't it? It is distinguished -- I see within that definition -- from treatment.
Why did you vote for the party that made this into law?
Whoa. Wait a minute. Stop. Obama said just the other day that the death panels had never happened. It was all a right wing plot, you right wing Madison plotter.
While some fear of death is natural, the belief that people are trying to kill you by denying treatment suggests hysteria. You are going to die, the only question is how, with dignity or as an empty miserable shell of a human hooked up to machines.
Well, in 2008, I was diagnosed with chronic kidney failure. So let me tell you about my experience with kidney failure.
Yes, I could have possibly lived up to a year or two without treatment. But the quality of life and my ability to manage my life would have sucked.
The metabolic poisons were building up in my body, poisoning my brain. I had increasing difficulty making decisions.
Memory lapses were becoming more and more frequent. I had increasing difficulty remembering my own telephone number.
On a couple of frightening occasions, I was driving my car on an Interstate highway, when suddenly I actually forgot how to drive! It was as if I had never learned how to drive. Each time, the memory came back after 30 seconds or so. I'm lucky that I didn't need to do any emergency maneuvering in that time frame.
With my blood electrolytes completely out of balance, the calcium in my bloodstream combined with the high levels of phosphate to produce an insoluble precipitate that accumulated in my skin. The result was the most severe itching I had ever experienced, all over my body. Much worse than the chicken pox I had as a kid. The itching was keeping me from sleeping. The usual remedies for itching had no effect, because these sharp little crystals were embedded in the deeper layers of my skin.
And my bone density was declining steadily. In addition to the itching, I had aches and pains all over my body. Walking was becoming increasingly difficult. I had a tendency to collapse and fall on the floor, even in my own home.
I got my kidney transplant in 2011.
So if a doctor offers palliative care in lieu of dialysis or a kidney transplant, make sure he explains to you what your quality of life will be like. I'll bet you won't want to take that option then.
Oh, there's one more thing:
Besides filtering your blood, kidneys have other functions. They manufacture a hormone, erythropoetin, which the bone marrow needs to manufacture red blood cells.
When my kidneys failed, my red blood cell count dropped to half normal (severely anemic). I had no energy to do anything. Even shoveling six inches of snow to free my car would cause me to pass out.
sinz52, thank you for telling of your experience.
Haha. The lefties who want to control every moment of your life, who want to make it impossible to slip on a banana peel through their thorough law making now embrace an end of life devoted to freedom from care.
Die in pain but with dignity.
Dignity my ass.
While some fear of death is natural, the belief that people are trying to kill you by denying treatment suggests hysteria.
Tell that to the people in the UK put on the "Liverpool Pathway" without their knowledge.
Hey! It saved money for the hospital, and the NHS made that the goal.
The issue is elderly with multiple conditions, frailty AND developing renal failure. In my experience some patients are concerned about being dependent on a machine. When explained in straightforward terms most get past that.
However, after experiencing dialysis, some seniors decide that this life is not what they want.
Unfortunately all too often no one asks them what they want.
As a bridge to transplant or as a treatment for the (somewhat uncommon) scenario of temporary kidney failure, dialysis rocks.
But most dialysis patients are in it for the rest of their lives. Most have multiple other health issues 'cause that's how chronic renal failure works.
Quality of life varies a lot. I see some patients who soldier on with a smile on their face and are a blessing to their families and an asset to society.
I see more who live uncomfortable lives that are with our current technology tied to three times a week dialysis runs.
Absolutely they should be given a realistic picture of what lies ahead, and so should their families. The trick is to do so when all concerned are able to think clearly. This is rarely done.
I used to work on the clinic side where I got to know my patients, and they me, over decades. We had those conversations. Now I work ER. Admittedly I see the healthcare system as a whole when it is having a Bad Day. But I often see folks who regret the decision to commit to long term dialysis.
Make your wishes and beliefs known to those around you. Live a life with enough value that either choice, departing on your own terms or going out "with guns blazing" is a valid one. I tell people that whatever choice they make is the proper one for them, but too often I see no informed choice at all, just the inertia of the System.
Tacitus MD
Sins52--not sure how it works. Were you on dialysis from 2008 to 2011? Do most people on dialysis hope for a transplant? What percent actually get one? Tks
Medical science has made progress in many areas but there is no cure for aging. If you are lucky (in the medical sense) you are going to die of old age. Nothing can be done. Death is the inevitable trade-off with life. You can make peace with this or you can rattle on about death panels.
" as an empty miserable shell of a human hooked up to machines."
Dialysis was a much worse option before the artificial erythropoietin was available. It required transfusions. They were always anemic and many got hepatitis from the transfusions.
Now anemia and transfusions are stories from the past. Another factor with dialysis is the maintenance of the AV fistula that is necessary to connect you to the machine.
In 1994, I went back to school at Dartmouth to learn the methodology to study medical outcomes using population data. All dialysis patients are on Medicare (another story) and the data is available. I learned how to study the results of the surgery to create these fistulas. I wanted to figure out if the method I thought was better, really was better since it had a big effect of quality of life for dialysis patients.
It looked like we had the method to prove one access method (the fistula) was far better than the most common one at the time. We applied for a grant to study the entire dialysis population (about 7 million at the time). We didn't get the grant because the people they sent our application to for evaluation didn't understand statistical methods. Also, somebody else had a contract with NIH to do all kidney failure research.
The secretary of the committee liked our proposal so much she sent me the letters from the reviewers and it was obvious they didn't understand our methods. The methods is now common but not then.
Life for dialysis patients is far better now. Young patients go to the head of the transplant list so most chronic dialysis patients are older. I can certainly see why government medicine doctors would write things like that NYT article. Soon, when my generation has retired, medicine will, all look like that. Sort of like university faculties where tenure is the most important thing, not students.
IPAB by any means necessary...
The best academic minds are now going into a new career of Professional Medical Ethicists. That means wording peer pressure guilt that will effectively cut the patients off from using expensive treatments to sound like the noblest thing a patient can do which is to commit suicide.
If only someone had explained this to Osama Bin Laden...
Come on Anne, you can’t mean that part about death panels. After all Sarah Palin said it first and you know that Palin’s wrong about everything!
Remember when they laughed at Sarah Palin when she said “Drill, baby, drill” because everyone knew that we were running out of oil. http://powersource.post-gazette.com/powersource/home-powersource/2015/03/17/Record-Oil-Glut-IEA-Filling-Storage/stories/201503170016
It’s not a scientific study, but I have noted that on the internet the people most ready to tell people to die already, that it’s so natural you should just go, are doctors or nurses (or just plain assholes). My theory is that medical personnel are so used to seeing people die – after all, the hospital is where you often go to die – that they become desensitized. The dying man is not a person but a job or an endless supply of problems. It’s nothing personal, it’s triage.
Moneyrunner said...
It’s not a scientific study, but I have noted that on the internet the people most ready to tell people to die already, that it’s so natural you should just go, are doctors or nurses.
Because of the loss of faith and the fact that regular people rarely kill animals or see people die at home, as they once did, the fear of death seems to have increased rather than decreased in modern times. Medical science can't do anything. You are gonna die. No need for death panels.
The question is how do you approach death. Do you do it with a full understanding of your odds or do you approach it in a blind panic desperately looking for any possible way out, no matter how illusory.
Not every one can read the medical literature and understand their prognosis in a rational way. It is important that the medical profession present this information in a way that the average person can understand. Attempts to do this cannot be rationally equated with an effort to kill people. They are already dying.
The question is how do you approach death.
As slowly as possible.
Even more than usual, ARM is particulerly unneccessarily cruel today.
"Particulerly" a proposed new spelling incorpoarating the "e" from peculiar. Which works quite well when referencing ARM. At least that's my current story.
Althouse has an irrational fear of death. It is not cruel to point this out. It comes up in her actually cruel dismissal of suicides and her constant reference to death panels.
No one in the medical field is trying to kill you. The average hospital will quite happily bleed you and your insurance for every cent they can get to keep you alive. Because the interests of the hospital and the patient are not always perfectly aligned it is not unreasonable to ask how are your interests and those of your family best served as you approach death. You can't answer that question without reasonable information. Attempts to provide that information are not the same as an effort to kill you. To believe otherwise is nutty.
For a life without intrinsic value, people certainly go to extremes in order to delay mortality.
Actually, Democrats who deny intrinsic value on principle (i.e. pro-choice) are at least true to their nature with Obama's insurance reform. You cannot, unfortunately, call them bigots.
ARM,
You touch on the key element, namely alignment of economic interest, but your understanding of that element is at best superficial.
CWJ said...
You touch on the key element, namely alignment of economic interest, but your understanding of that element is at best superficial.
By all means, enlighten us.
Nobel Prize winning physicist Richard Feynman chose to forego dialysis.
Wow, sinz, thanks for telling your story! So glad you got the transplant.
As for hating death and wanting to fight it off, what is irrational about that? Why don't you just lay down and die, ReasonableMan? What I mistrust is people who lure and encourage other people to die. This isn't irrational of me. Much evil comes in this form, including the affection aimed at suicides and people who decline too much medicsl treatment... not to mention the celebration of sacrifice in war.
I encourage "A Reasonable Man" to reject medical treatment if that is what it wants. I reject anybody else telling me how to respond to medical issues.
My libertarianism remains intact, as do ARM's totalitarian urges.
Ann Althouse said...
Why don't you just lay down and die, ReasonableMan?
Preparing oneself mentally to die and wanting to die are not even close to equivalent. Telling someone at the end of their life what their options are is not 'luring' them to their death. They are already dying, inevitably, inexorably. It bears no relationship to encouraging a young person with a full life ahead of them to die in battle.
Birkel said...
My libertarianism remains intact, as do ARM's totalitarian urges.
Foolish name calling. I am not advocating anything that bears any resemblance to totalitarianism.People should know the facts when they make end of life decisions, who is stupid enough to think that is totalitarianism?
When my father required dialysis at age 75 he was told: one-third of dialysis candidates your age try it, decide the intervention is not for them, and go home and die within a year. Two-thirds find it works for them, at least initially, though complications will shrink that proportion to about about one-half within a year or two. That information, presented without judgment, was useful. Some things can be known only through experience, and we should distrust those who pretend otherwise.
AA you should devote more space to the celebration of sacrifice in war. Obama is being pummeled for having withdrawn troops from Iraq instead of leaving them to continue the fight. And now many want to start a war with Iran. The ones dying and being maimed as a result have average life expectancies of another half century. Talk about death panels.
Earnest Prole said...
Some things can be known only through experience, and we should distrust those who pretend otherwise.
There is some truth to this, in large part because any projection about a patient's future is statistical. Most people are bad at thinking statistically, hence the survival of the gambling industry. The statistics present uncertainty for individual cases, which is all any patient cares about. But, ignoring those statistics can lead to some very unpleasant surprises. A cancer with an average survival time of five years means that many people die in the first two years. Not everyone is a winner.
readering:
Iraq was stabilized. Premature evacuation caused a resurgence of terrorism and more deaths than during the war. Besides, Obama, has expanded wars or anthropogenic conflicts throughout the Middle East, Africa, Asia, and Americas. His only principle seems to be opportunism.
That said, over 1 million wholly innocent human lives are subject to death through elective abortion annually in America alone. The abortion industry has caused more collateral damage than all wars and crimes combined. Obama is President, the head of the Democrat Party, that is pro-choice (i.e. pro-abortion) on principle. He is the Abortionist in Chief and any moral outrage he expresses at loss of life must be considered feigned and an act of propaganda.
Make life, not abortion.
Observation of facts is not name calling, ARM. That you find my observation less than appealing is unsurprising. You are a supporter of a centralized government, the inevitable result of which is totalitarianism of some brand or another.
The true believers are always first against the wall. Good luck.
The next time ARM gets sick, he should lay down and die. Because he is dying. And as he says, if you're dying and you fight against it, you've got an irrational fear.
ARM, you're going to die. Stop fighting it.
The government is working hard these days to give us medical information about the preferability of death. Who knew there were so many downsides to life and so many great benefits to foregoing medical care?
Maybe doctors could have brochures at the check-in desk. "Get Better? Why?," "The Sweet, Blissful Slumber of Eternity," "Getting Over Getting Old," and "Why Be Sick When You Could Be Dead?"
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