AND IN THE END

It can't be easy for anyone to hear a cancer diagnosis. It must be especially difficult to hear when you are 90 years old. Being 90 is a pretty lethal condition on its own; pairing it with one of the leading causes of death in the industrialized world must make the end feel very, very near. It's not an irrational feeling either. The end is getting near.

When I heard that 90 year old ex-president Jimmy Carter had signs that his cancer had spread to both his liver and his brain I was saddened. I like Jimmy Carter, and the news was as close to a straight death sentence that I could imagine for a man of his age. Which is why I was somewhat surprised to hear that he is choosing to undergo radiation treatments. Obviously he is the patient and it's his choice entirely; if he wants to pursue that course, he should. I'm curious, though, to know what endgame he foresees. Does he expect to "beat" cancer in his brain and liver? I've heard that radiation therapy doesn't make one feel terribly well, if I may engage in wild understatements. Does he hope that this will extend his life briefly, trading quality for quantity? Frankly he doesn't seem like the type of person so fearful of death that he would pursue that. Again, it's none of our business what he wants to do, but it's a good example of one of the hundreds of flaws with the system of healthcare in this country.

I am privileged to call some medical professionals friends, and they anecdotally confirm what repeated studies of American hospitals show: a great deal of the money and resources expended by our healthcare system are expended futilely. In some cases doctors and nurses know that it is futile; in others they are responding to patients' desire to exhaust treatment options when the potential benefits are minuscule and highly unlikely. Has any end-stage terminal cancer or cardiovascular patient ever benefited for more than a fleeting moment from being put on a mechanical ventilator? I suppose the medical literature could be scoured to find one.

As people so often do, I remember clearly being in the hospital when the only one of my grandparents I had any sort of relationship with died. According to what must have been hospital protocol, they prepared to use an injection of (adrenaline? something that re-starts hearts?) and a defibrillator on her. She was a massively overweight woman who had been confined to a hospital bed for months, slowly dying of congestive heart failure while hooked to various machines. The idea of trying to resuscitate her struck me, even at 15, as a ludicrous farce. My father asked, "Doctor, is my mother dead?" Yes. "Then what the fuck are you doing? She's dead." I mean, what was the best case scenario there? She lives another eight hours and then they do it again?

That is a question that seems to be asked infrequently in our medical culture. By all means, patients should have access to whatever treatment they and their doctors decide to pursue. And I know doctors are deeply frustrated by the insistence of patients (or families) to do things that are obviously futile. I envision every conversation with or about a terminal patient like Jim Carrey in Dumb & Dumber; the doctor says "The odds of recovery are one in a million," followed by, "So you're saying there's a chance!"

Nobody knows how they will react to being in such a jarring dilemma until it happens. It's easy to say "No way, I'd just pull the plug!" when you've never had to make that choice outside of hypotheticals. I also recognize that I'm not the best person to opine on this matter, given that I'm ready to call Dignitas during the average chest cold. And who knows, perhaps Jimmy Carter will experience a remarkable remission and go on to live many more years. I don't have a practical solution; I wish we could create some kind of system that would allow medical professionals to be as honest as possible (rather than erring on the side of avoiding a lawsuit) to patients who were capable of understanding the futility of spending gobs of money on the lightning strike odds that some treatment will buy them a few more days alive in the ICU.

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40 Responses to “AND IN THE END”

  1. Robert Says:

    Well, I remember when my first husband was on the ICU in 1990. Short version – he had AIDS and, well, it was 1990. They put him on a ventilator because his oxygen saturation was going to result in brain damage. When he was stabilized, the first thing he told them was "If the only way to save my life is to put me back on that, don't." They didn't, and he died. It probably helped the staff that his entire biological family was in Panama, and I knew enough not to make a stink about it.

    I hope that I have that kind of courage if it comes to that. I worked in a hospital from '84 to '08, and saw what illness and injury can do to the human body. A friend lost both legs to disease, and when the surgical team suggested taking one of his arms as well (to possibly prolong his life) he said no. Actually, he said, "What?! They're gonna whittle me down to a nub if I let 'em!"

    Too many doctors see death as a sign of failure on their part. Too many patients and their families agree with them. If I'm going to die by inches, let it be in a hospice care setting with all the palliative care available.

  2. Mo Says:

    Well, it's not just a question of recovery. We're all terminal. But this is all we get – there's no hereafter. So if you have a reason to live, and the treatment doesn't make life absolutely unbearable, you might decide to hobble along as long as possible. If you can afford it.

    The flip side, of course, is when the suffering is so intense and incapacitating that death is preferable. Can you chose to die by euthanasia?

    But, of course, that fool $arah "Bullseye" Palin and her "Death Panels" made having any sort of sane discussion of these end-of-life problems even more difficult.

  3. Quaestor Says:

    What I love are people who put their dogs on chemotherapy to "buy" them a short bit longer when they have cancer. I say this as a dog owner and lover, and a person who went through 2.5 years of chemo. It's one thing for a relatively young human who knows the reason for the medically-inflicted suffering and may have hope for a future, but why would someone put an animal through that when they have no concept other than that they're suffering…for the human's benefit, not theirs.

  4. Reneé Says:

    Planet money actually did an episode on this – apparently there's some town in Wisconsin where a very large percentage of the people have living wills. Basically they ask people when they're prefectly fine and rational specifics like "if it causes this much pain and improves your odds by x%, do you want it done?". Since most people say no to most everything, their health care costs are very low comparatively and people aren't suffering needlessly, so win win.

    Obama wanted to make this approach part of obamacare, but as the guy before me mentioned the republicans took care of that debate…

  5. svnski Says:

    I like that living will idea and think it's especially important for ageing baby boomers like my parents. My Dad looked after his mother for a few years when she developed Alzheimer's disease. It was very difficult for the whole family, especially towards the end. Making the big choices when you have the capacity to do so preserves your dignity and makes it easier for your loved ones to do what has to be done.

  6. George Says:

    I loathe when people brag how they didn't listen to doctors, and got better (mainly with non-lethal stuff, tho). They take it as "I knew, but the doctor didn't. Shows how much they know," and take such smug pride in it.

    Like, you didn't actually "know." You went with your gut and got lucky. Doctors, for the most part, try to appeal to the ideas that are grounded more reasonably. Much like any craft or profession that requires thinking about stuff thoroughly. But when they get it wrong, and a less reasoned, more instinctive idea is closer, if not correct; people misconstrue that as that process sucks, just feel it, without realizing they were lucky. That's damaging, and…well, the American way of doing things, I guess.

  7. Talisker Says:

    To answer Ed's question — no, there is no realistic expectation that a 90 year old man will "beat" cancer.

    The gallows-humour saying goes: The objective is to keep the patient alive long enough for something else to kill him.

    Some cancers, and some courses of treatment, are more aggressive than others. If Carter's is not spreading particularly fast, it's possible radiation treatment would give him a few more months or even years at a reasonable quality of life.

  8. LK Says:

    I was there when my father was dying of cancer is the hospice. My aunt, who is a surgeon, sat with him for the final hours, and said afterwards it was a enlightening experience for her as a doctor, letting someone go without all the rush and activity of crash-cart frenzy.
    I was there when my wife was dying of cancer (at the ripe old age of 36), and the doctors refused to give her the pain killers and sedatives she was asking for "because her blood pressure is too low, it could kill her". A woman whose cancer has spread to her liver, lungs and brain, is in constant pain and can hardly breath even with 100% O2.
    But I was also there with her mere days earlier, when the oncologist was offering another treatment regime, that had known and nasty side-effects and success was measured in weeks of life extension. And our response was unequivocally yes. For a young parent, even another day with her children is worth all the suffering in the world.
    I cannot but assume that there are other places in life, other positions, where people feel passionate enough about what they are doing that almost any price is worth the extra day or week or month of it. The bigger question, of how we weigh those passions against the real and climbing costs of enabling this extra time, is something I don't feel capable of discussing. But it should nevertheless be discussed, and at length, hopefully without foaming and frothing.

  9. VCB Says:

    Hey, all — non-practicing physician (i.e., I went to medical school, have never actually healed anyone in the real world, do research and say arrogant things at cocktail parties). From what I can guess, the radiation is for palliative purposes — shrinking tumors to make the time remaining more comfortable. Radiation has a bad reputation, but over the past 5 years certain types of solid tumor radiation therapy are pretty amazing, compared to the past — 3D imaging allows fine targeting of some abdominal and some brain masses, significantly fewer side effects. So the decision to go forward probably makes sense if you think of it that way. Could delay blindness, could ease pain to decrease amount of opioids, etc. It's not grasping at straws or trying something aggressive, to me. Seems more like logical palliative therapy. But of course — I could be 100% wrong, never having seen the charts, etc.

  10. Katydid Says:

    @ Quaestor: I don't necessarily disagree with you about chemo for pets, however, it seems that it doesn't make dogs anywhere near as sick as it makes people.

    Re: euthanasia; for the past quarter-century (yikes, that hurts to even type it), I've been a foster parent for a local pet rescue group. Since an animal older than 5 has practically zero chance of being adopted, I've had a number of them spend their final years with me–one, a cat, I had for 19 years and died at (we think) the age of 22. One lesson that's really been driven home to me is that sometimes there *is* no quality of life and the kindest thing you can do for a living being is end the suffering. It's so very frustrating to me that it's perfectly acceptable to say to your vet, "It's time", but not perfectly acceptable to say to a doctor, "It's time". F*** Sarah Palin and her ignorant, shrieking ilk.

  11. Katydid Says:

    I was a child when Jimmy Carter was president so I can't speak to his presidency, but everything he's done since then has been laudable. I was grieved to hear about his cancer diagnosis and I'm hoping that the treatment he's being given prolongs the good part of his life.

    Re: the costs of end-of-life care; I'm dealing with this right now with my elderly parents, but since my father had the foresight to make a career of the military 55 years ago and retire with full benefits, my parents enjoy complete access to the latest drugs, doctors' time, etc. for $400/year. I'm dealing with one of the genetic issues my mother passed down to me, and I can tell ya, it ain't cheap, and her issues are exacerbated by her crappy American diet and refusal to get up off the couch unless it means going out to eat or going shopping. I shudder to think of the cost both my parents' final days will rack up.

  12. chris y Says:

    I would guess President Carter's decision stems from his faith. I, as an unbeliever would scrawl "Do Not Resuscitate" in red ink on every available surface, and hope the painkillers work. He believes deeply that he is called to serve and I suspect he feels he has to carry on. He's 90, ffs. Most people who get to 90 sit in their yard with a beer and insult their grandchildren for a living. Not Jimmy. I don't remotely share his beliefs, but good luck to him, most sincerely.

  13. Katydid Says:

    My take on it: Jimmy Carter is respected world-wide. He spends his time eradicating blindness in third-world countries, building homes in the US for people who need them, and negotiating between hostile groups. If he feels like he wants more time to do these things…well, that's not a bad thing.

  14. c u n d gulag Says:

    I don't have much time this morning, since I have a doctor's appointment soon, so I'll be briefer than usual.

    Sometimes, older patients try different medical treatments so that their spouse and family can continue for just a bit longer, to get their SS benefits.
    Sure, if there's a spouse, he/she continues to collect that amount as SS Survivor's Benefits. But when they do, they lose whatever SS money they had coming to them.
    Sad, but true.
    And a lot of people don't know or realize that.

    Also, sometimes families keep their elderly relatives alive, to squeeze and extra SS check or two – or three, or four…
    I know a family who did this, because they couldn't do without that money, and just live on the one SS Survivor's Benefit check.

    Now, that may sound selfish on either the patient and/or the families part, but that's also a condemnation of our economic system.

    Sure, keeping an elderly patient alive who will soon die, is extremely expensive, but we don't know what the families situations are.

    I love Carter, who was a decent President. But he was a much better human being, than President.

    This past weekend, he taught Sunday School, prior to starting treatment!

    I'm an Agnostic, but when I look at the good that Jimmy Carter has done after leaving office – things that I'm sure most of you know about, and if you don't, Google him – I see someone who really lived up to his Christian ideals.

    I wish you nothing but the best, President Carter!

  15. c u n d gulag Says:

    Well, that certainly wasn't as brief as I thought it would be! :-)

  16. Katydid Says:

    Good luck today, Gulag! And thanks for the education on SS benefits.

  17. Skepticalist Says:

    As we say here, Carter is such a decent man. I suspect very few people enjoy life more than he so I can understand why he may want to hang on. I'm not sure what I would do. In his case it's affordable. Emotions become even more important.

    On the other hand, many of my friends and family are nurses so are often involved with medical "decisions." A lot of them say they wish euthanasia was an option. I tend to agree with them. My family is derived from some ostensibly rather unsentimental Scandinavians much like those from Lake Wobegon, however.

    My neighbor is one of those super Christian types and works with several 100 year old patients around town. At least half of them have little idea where they are. He sees things differently. That's hard for me.

    Even I was somewhat involved. I worked for a veterinarian for a short time and euthanasia was part of it. Meeting the owners was the worst part even when they were glad it was over. It was often harder on the Doc.

    Maybe this sounds selfish but death creates shitty jobs.

  18. S M McBean Says:

    I greatly admire Carter and suspect he'd chose treatment even he knew it would increase his own personal suffering as a symbol to others. The man has great integrity. I don't share his faith and optimism but respect that he's accomplished so much with them. He also has means, unlimited access to the best medical care and a personal (near universal?) support system, so his parameters are far different from ours or our parents.

    That being said, I intend to donate to the Carter Center to help Jimmy see the last Guinea worm die. It is one of the most effective charities out there and I encourage anyone to join in as homage to his life works.

    BTW, hang in there c u n d gulag!

  19. Cat Herder Says:

    @ Quaestor

    I'm very sorry to hear that you developed cancer and had such a long (and I am sure terrible) treatment protocol. Here's to hoping that it never comes back, and that you never need that sort of treatment again.

    That said, your personal experience with human chemotherapy does not qualify you to opine about veterinary chemotherapy; they are not at all the same. I am commenting because your view is unfortunately common, and leads to pets being put down when they could have many months/years of *healthy* life in front of them.

    Unlike human chemotherapy, veterinary chemotherapy is conducted with the goal of extending a high quality of life (remission), not permanently eradicating the cancer (cure). Accordingly, much lower doses of therapeutic are used, which greatly reduces side-effects. So, for *some* types of canine or feline cancer, chemotherapy is a good option.

    I will use my own personal experience as an example. Our beloved dog, Dewey, was diagnosed with B-cell lymphoma in the summer of 2012. He was treated with regular chemotheraphy and lived a normal, healthy life, most of it in remission, until just a few days before his death this January. Chemotherapy gave him another 2.5 years of high-quality life. During that time, he was on many different types of chemotherapeutics, but in all cases the only side effects were a ~1/2 day of lethargy after treatment and occasionally reduced appetite for a day (but no vomiting). Other than these small, transient effects, he was exactly the same as he was before getting cancer. Frankly, the biggest side-effect was to our bank account; veterinary chemotherapy is expensive.

    So, people should view chemo for their pets as a viable treatment option if their finances allow it. Because of the reduced dose used, side-effects are very minor relative to what a human would experience. We certainly have no doubt that we did the right thing for Dewey by seeking treatment.

  20. Greg Says:

    Carter also appears to be in excellent health for a 90-year-old, which is probably a factor in whether chemo is a usable option.
    LK I am crying unashamedly in my office over the idea of having to choose a few more weeks for a little more time with the kids. I feel like I should offer condolences but it also sounds well enough in the last that I also feel like it's none of my business. Thanks though for sharing a necessary reminder about what is valuable.

  21. Jonathan Arnold Says:

    Brings to mind the amazing article in the New Yorker about this very same thinking. I guess it hasn't gotten any better in the ensuing years:

    http://www.newyorker.com/magazine/2010/08/02/letting-go-2

  22. akabruno Says:

    @jonathanarnold

    Atul Gawande has since converted that article into the book, "Being Mortal."

  23. Michael Says:

    Different radiation is different, so there is space for Pres. Carter to be engaging in his usual good sense.

  24. Whitney Says:

    I wanted to second what VCB said about radiation's bad reputation. I used to work for a company called Accuray that manufactures radiotherapy machines that are orders of magnitude more precise than "conventional" radiotherapy (i.e. the radiation that makes you so sick). So if Mr Carter is eligible for one of those treatments, the physical and emotional cost to him might be modest.

    Of course the monetary cost remains, and is all the higher with the more sophisticated treatment.

  25. Omri Says:

    In his last months, Patrick Swayze gave us the right terminology when he talked about spending time fighting to live versus spending time living.

    he did use every conventional means available to fight his pancreatic cancer, but explained with that distinction why he was not trying any alternaquack nonsense.

  26. jon Says:

    Having gone through some of this vicariously via the girlfriend and her mom's death, I have no clearer ideas. Everyone can run the numbers and see that end-of-life care should probably be painkillers and favorite foods. But no one can apply those statistics to Mom, Dad, or Me. And that's not really true, because the insurance company certainly can.

    Her mother was battling cancer for five years. She had COPD, horrible arthritis requiring steroids that turned her skin to tissue paper, and was going deaf, too. She also loved knitting, football, and watching Viggo Mortensen movies. She even had a boyfriend for a while. Yes, they did. The medicine she took to hold off the cancer cost more per year than the house she lived in. But it kept her alive. Is it about money? Is it about quality of life? Is it about her daughter and grandchildren? It's about all those things. She died with plans for the next day. She was optimistic about getting her weight back up so she could have the heart valve treatment she needed. Her doctor knew the truth.

  27. JustRuss Says:

    Keep in mind that chemo and radiation are two very different treatments. Chemo on a 90-year-old wouldn't make sense, but radiation, while no picnic, is much less debilitating. Radiation's greatest drawback is that it can actually cause cancer to appear after a few decades, but that's not much of a concern for a nonagenarian.

    Wishing President Carter all the best, may he live to see 100.

  28. sluggo Says:

    I think he is having radiation therapy not chemo, so the side effects would be less drastic. He is also not in a 'end of life' state, as he is mentally acute and ambulatory. If he could beat this he might have ten good years left.

    John Wooden lived to be nearly a hundred was sharp til the end.

  29. mothra Says:

    Yep, I'll weigh in here, since I just watched my brother die of pancreatic cancer. He, like Patrick Swayze, chose to fight it with conventional means. He managed to get three years…THREE YEARS….of good quality life after diagnosis. He beat the odds and astounded his doctors. He was relatively young, yes, at 59, so that might change your mind, Ed, but when people hear "pancreatic cancer," they immediately think instant death. Not always true.

    So, indeed Jimmie Carter is old. But that doesn't mean he is finished. I imagine he made his decision to treat based on his physicians' recommendations–while the rest of us hear "brain and liver cancer? He's done for!", we don't know what is really going on.

    Oh, and as for resuscitating elderly folks who are too sick to probably be able to live for much longer, hospitals/doctors do this when there is no living will or DNR order in place. My mother, who was not completely out of it, but definitely ready to go, died in an ER of a heart attack. Docs and nurses rushed in to resuscitate, yes, but I told them she was DNR and they stopped. So…for all of you who have elderly parents, you sit down with them and have the hard discussion as to what they want if they crash. Also, everyone out there needs to have a living will. NOW.

  30. Ed Says:

    President Carter said that while he's at peace Rossalyn (sp) was not. He may be doing it for her.

  31. Jason Says:

    I have to respectfully disagree here. My father was diagnosed with melanoma in the brain as well, only his was a golf ball sized tumor. The doctor said if they'd known it was malignant, they wouldn't have bothered with the surgery and he would have died within a couple of months. But they did remove it and he got radiation treatment. The radiation wasn't that big a deal, he seemed hardly bothered it. Despite how much his cancer had spread, he lasted nearly three years, all but the last couple of months with a high quality of life. He got to see me get married and had a great time.

    With Carter, things are even better. An oncologist I heard on NPR the other night said that treatments for melanoma have exploded in the last five years or so. Carter is getting a new therapy that basically allows the immune system to target the cancer cells (the cancer "turns off the radar" so to speak). She said that he could very well live "many many" years more and without the negative side effects of chemo (as I said, the radiation isn't that big a deal, at least if it's similar to my father's experience). She also said that older patients responded extremely well to these new treatments.

    So no, I don't think Carter is desperately clinging to life. He seemed very calm, almost blase about the whole thing, something I'd attribute to his religious faith (a luxury that I, an atheist, sometimes envy).

  32. Skippper Says:

    Of course, it's different for everyone depending on their own personal goals and desires. So, the choice should always be left to the individual, as long as the choice is properly informed.

    However, many individuals do not get adequate end-of-life counseling — something that may change, hopefully, in the near future. Vain hope is often held out, while sobering information about the burdens of the treatment and the reality of the situation are withheld.

    The fact is that doctors treat patients more aggressively than they would choose to be treated themselves under the same circumstances. It's kind of a paradox. Mostly, they feel it's expected of them to be as aggressive as possible when it comes to a patient. But doctors know that for many patients, it's a futile battle.

    If you haven't read "How Doctors Die," I recommend it highly. It's pretty sobering.

    http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/

    "It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

    "Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen–that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right)."

    I've been studying end-of-life issues for decades now. It was a main focus of my studies in graduate school. I've also worked with patients (and families) in hospitals facing life-threatening illness. Things are better than they were decades ago, but we still tend to over-treat.

    I've had two close friends who have chosen what I considered aggressive and futile treatment. One died under terrible circumstances. The other was recently diagnosed and is undergoing massive and debilitating courses of chemo — that will extend his life briefly, but unpleasantly. He has spent several months in constant pain, unable to enjoy life, can't eat what he wants, can't spend time with his friends, and has lost over 100 pounds. He spends most of him time simply trying to recover from the chemo. It will not save him. The cancer is too extensive.

    Like Ed, I have Dignitas on speed-dial, but you don't have to fly to Switzerland. Moving to Oregon will do the same thing. There is no waiting period. Once you move there, you are a resident and qualify for end-of-life treatment.

    Another good resource, which I also highly recommend, is a group called "Compassion and Choices." They are working nationwide to pass legislation to allow people to control their own dying on their own terms.

    They have a web site and a lot of good resources. You can even volunteer.

    https://www.compassionandchoices.org/

  33. Emerson Dameron Says:

    @chris y:

    I hadn't considered that and you may have cracked it. Carter has been increasingly concerned about and involved with the world for decades. He probably assumes God will pull the plug when his work is complete. Even as a Buddhist atheist, I gotta respect that.

  34. Lless Says:

    I expect that his choice is driven by the fact that Rosalyn is still living.

  35. Dr. Acula Says:

    "I would guess President Carter's decision stems from his faith. I, as an unbeliever would scrawl "Do Not Resuscitate" in red ink on every available surface,"

    Not really. My mother is a practicing Presbyterian, and she has a DNR on her record.

  36. Jesse Says:

    "I wish we could create some kind of system that would allow medical professionals to be as honest as possible…"

    The thing is, doctors are pretty honest in my opinion, but there is uncertainty in everything. Say a doctor sees 100 terminal cancer patients. The one guy who beats cancer and survives is going to go around telling everyone how the doctor was an idiot and all you gotta do is smoke 10 joints a day to beat cancer. The 99 other guys are dead and can't tell anyone that the doctor was right.

    No put yourself in the shoes of those 100 people. The consequence of trying, and failing, is no worse than just giving up. You're toast either way. So why not smoke a bunch of pot and see what happens?

  37. PhoenixRising Says:

    Yeah, no. Rarely do you need to be schooled about your hook, but this is that time. Wrong.

    1) There is no such thing as 'cancer'. There are malignant growths of cells that are mutated from various types of cells. Jimmy Carter has melanoma arising from a growth in a mucus membrane, which is like but not the same as a melanoma arising from a skin lesion.

    2) I also have that type of melanoma, and if I had brain and liver mets, I would rush to get the treatments he's getting. Targeted radiation in the brain to make my final months (whenever they happen) less drooling and ranting, more enjoying sunsets; immunotherapy which may allow the patient's own body to ID the malignancy as a threat and purge it. Both treatments work as well on patients his age as they would on me, and I'm half that age.

    3) Sorry about your grandma. Sounds like that left a mark.

  38. Gil More Says:

    Ed,

    My Ma's experience showed me that it's the patients choice and that choice may change.

    Breast CA and mastectomy in 1983 & again in 1984. Metzed to liver in 1985 and she was given 3 months. Also offered and accepted a trial drug called tamoxifen. She accepted, but vowed she would never take anything that left your worse for the wear (nausea, vomiting, etc). That changed.

    Tamoxofen worked for 3+ years with zero side effects, yet we knew when it did quit the 3 month clock would start and it did. Cisplatin and then a combo called 5FU kicked the crap out of her. Yet her will to live was still strong. Her final experemental drug required a hospital admit with the "paddles" manned and ready outside the room when she received a drug that dropped blood pressures so low that sometimes the had to bring you back with paddles. The infusion took an hour and when complete she was given and envelope with a pill inside. It was the antidote. She was to take it 24 hours afterwards to stop the effects of the drugs (poision?) they had given her. . . This regiman didn't work.

    I took her home and walked arm in arm up 3 flights of stairs after they told her she had less than a month, and this time it was for real as there was nothing left to try. 2 days later she past while I was holding her hand. It will be 25 years next month. I am now 3 years older than she was when she died. Autopsy showed it metzed to brain, spine and bone. She knew of progression because they quit doing full body CT scans a year earlier.

    I volunteer for a local non profit hospice and sit bedside with patients during their last 48 hours. The hospice provides round the clock coverage so that no one has to die alone. (patients are non communicative at this point)

    It taught me you never know how far you will want to push the envelope until YOU are there and not to judge others end of life decisions.

    Thru out this struggle for life was another with the insurance companies. . . One that was just as bad. . .

  39. BubbaDave Says:

    My mom still talks about one of her professors in med school who started his lecture with "Death is not the enemy. Disease is the enemy. Pain is the enemy. Suffering is the enemy. Every patient will die; our job is to cure disease and limit pain and suffering."

    The problem isn't that most doctors know that, it's the combination of patients who hear "a 1% chance is a chance" and of malpractice-suit fears (often overblown, but every doc knows some stories of epic stupidity) and of doctors who are reluctant to ever say "we've done all we can do; we're sorry."

    None of which means that President Carter isn't making the right decision for himself. He may not be buying 15 more years of life, but making sure his last year or two include more conversation and less pain are certainly legit reasons.

  40. Interrobang Says:

    My mom is a (so far) 3.5 year breast cancer survivor. She was not debilitated much at all by chemo, and even less so by radiation. I agree with VCB; it sounds like they might be giving Carter the radiation to shrink the tumour masses (they had to do this first with my mom before she was eligible for surgery because her encapsulated mass was huge :( ) for palliative reasons, but they might also be doing it for treatment reasons. Without knowing more of the details, it's pretty impossible to say.