Because "no politics" doesn't always mean that Fridays will be full of funny.

Frontline has been knocking it out of the park this season and I just got around to watching "Facing Death", a highly recommended look at patients and families in intensive care units making decisions about using advanced technology to prolong the lives of patients with no hope of recovery. We see respirators in comatose stroke victims, cancer patients in their final days, and $250,000 bone marrow transplants that buy terminal patients a week or so (at best) of poor quality life.

It is easy for the home viewer to watch these patients and think "Give it up, man." The doctors in this hospital are remarkably frank, as I imagine most doctors in those situations prefer to be. They let patients know in no uncertain terms that additional, intensive, and often expensive treatments are not likely to prolong life and offer no hope of recovery. At best, it buys a small amount of time that might be spent heavily sedated, comatose, or in agonizing pain. The family members who refuse to take their 90 year old mother off the respirator seem delusional to us. We would all like to think that we would be more rational in the same circumstances. Call me skeptical.

Is any of this worth it? Do doctors need to do an even better job of telling people "Look, this half-million dollar liver transplant is going to buy you a week or two and then you are going to die anyway" or are they already too eager to talk patients they consider terminal or hopeless out of treatment? When doctors do advise radical procedures to terminal patients, are they doing it to "practice"/experiment or do they actually think that it will offer meaningful benefits? This must be a very hard line for health care providers to toe. I can imagine cold, emotionless doctors who write off patients with terminal diseases at the drop of a hat, potentially denying treatments that might provide legitimate benefits. I can also imagine doctors who are unrealistically optimistic, insisting on throwing the kitchen sink at every patient no matter how hopeless. There is no easy way to balance those concerns.

People die in hospitals much more often today than ever before. We see this as progress, a sign of the broadening of access to advanced medical care. It is fair to question, though, what is accomplished by spending limited resources and obscene amounts of money to treat people who are barely alive and aren't going to get better. Shouldn't the patients tell the doctor "No more"? Shouldn't the next of kin face reality and take Mom off the heart-lung-dialysis machine after months without improvement? From a moral or practical standpoint it is a slam dunk. Resources are better spent on patients who might actually improve with treatment, and literal billions of dollars are spent on mechanical life extending interventions that serve no real purpose. I have reservations nonetheless.

My opinion stems not from a religious or moral principle but from a sense of caution. Until we are in that position ourselves, none of us can say definitively how we will react and what we would want – for ourselves or our kin. Who really knows what happens when we reach the end? Anyone who still has meaningful levels of brain activity has some kind of quality of life. Maybe the last day is when we have the vision / dream that explains the meaning of life. Maybe one more day with the family, even if unable to move or speak, is worth any amount of money. Maybe the small amount of extra time is enough for people to figure things out and make peace with what is happening to them.

Before you grab the pitchforks, let me reiterate that I do recognize practicality as an issue. People who are brain dead should not be sustained. Bone marrow and organs should be directed toward younger, healthier patients who might actually recover. Doctors and patients do need to do a better job of saying "There is no hope for improvement. Further treatment beyond making you comfortable is futile." Some people can't let go and waste hundreds of thousands of dollars and man-hours seeking a miracle recovery up to the very last minute. Nonetheless, never having been in that position (directly or as the family member making decisions on a dying person's behalf – I've been pretty damn lucky so far) I am hesitant to argue too strongly against end-of-life medical expenses. Sure, the 30% of all healthcare costs spent in the last year of life could be seen as "waste". Maybe it is. Maybe doctors should tell terminal patients to do what humans have been doing for thousands of years – go home, go to bed, and wait for the end. But at the same time, we have to recognize that we are making some mighty big assumptions based on how little we collectively know about what happens at the end and what value, if any, is derived from buying small increments of additional time at great cost.

34 thoughts on “NPF: THE GREAT BEYOND”

  • Alvin Brinson says:

    My father died in 2008 of Chronic Lymphotic Leukemia. It took way too long for it to be diagnosed, due to his lack of insurance and lack of care from the Harris County Health System. Once it was diagnosed, he was not able to recover enough to undergo chemo, and the cancer went malignant and spread to other organs.

    At that point, his kidneys began to fail and he had to be put on dialysis. We were called to the hospital and told the outlook. He was unconscious at this time, and we were told he was likely to remain that way.

    I believe we were told that they could "continue dialysis and see what happens" but it would have been constant dialysis and not just periodic. His health would also NEVER recover to where he could undergo chemo. At best there was a slim possibility of maybe days or weeks of life left if we had the hospital fight aggressively.

    He was 64, and for us children, it was hard to let go. Worse, we had to make the decision for him, without being able to talk to him, to explain why or anything.

    We made the decision to remove life support. It was the hardest thing I've ever had to do. But I know that there is no quality of life when you are hooked to a machine with no hope of recovery. I personally would rather see the hospital bed, and the funding, go to someone who has a chance to live and lead a productive life, and I believe my father felt the same way. He passed with all his children holding his hand, many difficult hours after removing life support. He was not alone.

    That is all we should ask for. It is a selfish desire to prolong the ending of a life longer than necessary. When there is no hope of recovery, families need to let go. I saw families in the same hospital when we let our father rest after a long fight who could not make the decision. I had seen my own father unable to make the decision for his father, and that had ended no better.

    Doctors NEED to be honest with patients, and the courts need to back them up. End of Life Counselling is something that really is needed, both for the person whose life is ending (if possible) and for the family. It is a shame that people turned that into "Death Panels"… Seriously though, if a "panel" of doctors agree there is no hope of survival, then it should be criminal to spend valuable time and resources when there are patients who can't get treated who need them.

  • Holy shit, this is heavy. I think we have a pretty messed up relationship with death in this society. I'm in pretty much total denial myself. This is some heavy food for thought. I think I'll go watch Celine Dion do AC/DC and pretend this is already hell.

  • ElectricGrendel says:

    I believe that if I had to make this decision for my dad then I would do the right thing and let him pass. But the emotions that surround this decision are so powerful that it's hard to say what one would do until one is in that situation. This is why I am have a living will and an advance medical directive. The process of ending my affairs is going to be annoying enough for whoever gets that honor. The least I can do is make it so that they don't have to make the decision to let me die or not. Many hospitals will not accept medical directives from outside of the hospital, so if ever you go in make sure that you've told the staff what measures you do or do not want to have taken in the case of a crisis. It's the least you can do for your families.

  • Humans, as a species, do not want to accept that things end.

    All of the religions in all of the world throughout all of history have some story about what happens when you die. Among all the other things they set out to explain, the most prevalent is to explain how life is somehow not over when you expire. This is understandable — no living human can possibly fathom what the end of consciousness is like, people spend hours, days, years wondering what it'll be like to not feel anything anymore. This is natural, given that from the day of our birth, our consciousness has some presence every instant of every day, barring major head trauma. Even when we are sleeping, we do not turn off, we dream and experiencing things.

    People have a hard time wrapping their heads around the idea that, in the end, you won't care what it's like to not experience anything anymore, because you won't be experiencing it.

    It is the one great unknown in our technological society. And the unknown is frightening. So frightening that people will spend absolutely ludicrous amounts of resources trying to avoid it, in whatever way possible. That they struggle, in vain, to avoid the inevitable fate that awaits all living things is not something they can be faulted for, it's simply fight-or-flight. The gazelle or zebra still tries to get away, even when the lion's jaws are around its throat and its end is absolutely certain. Simple biology will not allow a functioning mind to accept it, unless one has come to terms with the idea that the end has come.

    Eventually, everyone has to face it.

  • It's important for people to have this discussion with their loved ones, so that if the worst comes about the next of kin doesn't have to be paralyzed by indecision and guilt. Both of my grandmothers have suffered traumatic brain injury, which they survived but kept them basically incapacitated. It was obviously a brutal, grief-stricken experience, but it was without any question as to what actions needed to be taken.

  • Edit: I should amend my post, I used the present perfect to describe my grandparents. They both passed away shortly after they became ill.

  • This entire subject is utterly terrifying to me. I haven't had decent health insurance for years. The thought of developing a major, life-threatening illness that would require extensive hospitalization is the stuff of nightmares; I would have to throw myself on the mercy of the state, and hope that my family wouldn't get sucked into paying my bills.

  • displaced Capitalist says:

    "If they would rather die, they had better do it and decrease the surplus population!"


    Also, from the church of Euthanasia:

    We are not of this planet.
    We do not understand
    Your strange customs.
    Your planet's ecosystem
    Is failing.
    Your leaders deny this.

    Your leaders deny this.
    Your leaders deny this.
    Your leaders deny this.
    Your leaders deny this.

    Do your leaders lie to you?
    Do so many of you believe these lies?
    Your strange customs.
    Believe these lies?

    Save the planet.
    Kill yourself.
    Save the planet!
    Kill yourself.

  • I believe it was Dr. Joyce Brothers who said: "Americans think that death is optional." As the song title illustrates: Everyone wants to go to heaven but nobody wants to die.

  • Nora Carrington says:

    My father died in June 2008. He was 84. He'd been on dialysis for four years, and had congestive heart failure which is what eventually killed him. There were multiple crises, all involving brief hospital stays, one of which required transition to a nursing home before he could get back home. All his dialysis was done at a stand-alone dialysis center; most of the time he could walk to the car and walk in, sometimes he was in a wheelchair.

    In the cosmic scheme of things, he had a very good life and a better than average dying, in the sense that his care was paid for (he was a WWII vet, on Medicare, and had decent supplemental insurance), and he was awake, aware, and connected to the world until the last 24 hours or so. He died in a hospice hospital, 24 hours after being transferred from a regular hospital.

    In the last year or so he was also cared for by hospice nurses at home, who monitored vitals, did wound care associated with poor circulation in his feet and provided emotional support to my mother.

    Here's the hard part that has to be fixed: all the hospice nurses spoke in grave terms about how terribly, terribly ill he was. In hindsight, of course, that was true. But at the time, the deterioration from the golf playing, bowling 80 year old and furniture refinishing 81 year old he had been to the TV watching 84 year old was so gradual that it was impossible to see him as actively dying until he was dead. He'd also gotten remarkably better for a period of a bit more than six months after he began dying. Like miracle remarkably better, which didn't help my mother, especially, really come to grips with how terribly ill he was.

    I'd like to think that had he been hospitalized more, or unconscious ever that my mother and I would have been less delusional. I think so. But the counseling that doctors do needs to be extremely direct, even harsh, and the key to challenging the delusions of the family has to do, I think, in stressing the chasm between the healthy person and the sick person, not on the closeness of the sick person to death.

  • The Moar You Know says:

    "Nonetheless, never having been in that position (directly or as the family member making decisions on a dying person's behalf – I've been pretty damn lucky so far) I am hesitant to argue too strongly against end-of-life medical expenses."

    You will start arguing against them, and a lot of other of the obscene end-of-life bullshit we indulge ourselves in as a society, when a family member asks you to let them die and the doctors refuse to do it. We had to go to court to make my grandfather's medical care providers withdraw care and let him go peacefully.

  • As in all extreme situations, no one can be certain how he'll (or she'll) deal with the crisis until it comes, and so much depends on the variables that it seems pointless to try to sort things out ahead of time. But it helps to think about this before you're on the spot, it really does. Learn about organ transplant, organ donation, quality of life decisions, and figure out where you stand — do some thinking before emotions take over, and your emotions will have been schooled somewhat. But leave yourself room to feel differently once you are in the clinch. You may have to make an immediate decision that is too hard not have some thought behind it. You don't want to make a choice you'll regret.

    More reasons why I'm for legalizing same-sex marriage. I love my family, but my partner will respect my wishes and they won't, whether it's pulling the plug, blood transfusion, DNR, or cremation over burial. A spouse has rights that all the cobbled-together domestic partnership regs don't match.

  • It is easy for the home viewer to watch these patients and think "Give it up, man." The doctors in this hospital are remarkably frank, as I imagine most doctors in those situations prefer to be. They let patients know in no uncertain terms that additional, intensive, and often expensive treatments are not likely to prolong life and offer no hope of recovery.

    I've actually been in this situation. My mother, a stroke patient, finally had a shunt put in her brain and it got infected. She was in a coma-like state in ICU at UCLA Medical Center for a few weeks. I really wish the doctors HAD been more frank. No one sat us down and said, "there's no hope for recovery, pull the plug." She had a living will, after all. We knew she did not want to be kept in a Schiavo-like state for years. We KNEW this. We'd talked about it. The whole family had talked about it back when Karen Ann Quinlan got the entire nation talking about it. There was no doubt in our minds as to what my mother's wishes were.

    Where we had doubt, where we needed clarity, was on the medical front. We needed the doctors to tell us that there was no hope, and that was something they couldn't do. They couldn't tell us with absolute certainty that she had only a 30% chance of recovery or a 50% chance or whatever. They didn't know. For whatever reason there are certain medical cases where the doctors will NOT give you that clarity.

    So we had America's Death Panel to thank. The insurance company stopped paying after 30 days, so we checked mom out of the ICU and she was brought home into hospice. She died 2 hours later.

  • I've been there. My then 82-year old mother had a massive cerebral hemorrhage in 2002. Unbelievably, she survived it, but was left in a comatose state – the brain damage was severe and irreversible. There was nada the hospital could do, and since her vital signs were stable, she was discharged to a nursing home.

    After several weeks at the nursing home, one of her nurses finally approached me and suggested that Mom be transferred to hospice care. This surprised me, since I'd been read the riot act by the administration on Mom's admission – they made it sound like it was illegal to remove someone from life support. But with the assent of two physicians (Mom's and the home's), I was able to make the transfer.

    This was hard… not just because it was my mother; but also because of the way it was done. When the time comes for a pet to be "put out of its misery," we make it mercifully quick and painless. Not so when it comes to people. For people, somehow it strikes society as more "merciful" to starve them to death. Mom was removed from tube feeding, and given only 1 liter of water per day + a ton of pain meds. Since she'd been somewhat overweight to begin with, the starvation regime was painfully slow: it took two full months for her to die. She might have even lasted longer, except the nurses quietly started to increase her medication over the last 10 days to facilitate the process.

    I had nightmares for weeks – both during and afterwards. But I don't regret the decision, and if I had the chance for a do-over, I'd have made the exact same choice… which was basically between a somewhat-less lingering death and a more lingering death.

  • Maybe I'm weird, but letting my mother die wasn't at all a difficult decision for me. She had terminal cancer and was so stoned out of her mind on pain medicine that she seemed like she had Alzheimer's. I don't think she even woke up during the last two days of her "life." I've always been comfortable with the idea that life sometimes ends. There was a time before I was born, and there will be a time after I'm dead. Life will go on, just not mine. Big deal.

  • I had the best mother-in-law in the whole world.

    She had cancer and was being treated w/ radiation. At nearly 90 she had a serious heart attack on a Sunday evening and we had the EMTs come for the fast ride to St Mary's in Athens. She was fully conscious and a very practical lady.

    The big dog heart doc came in and told her (in my presence) that they could transfer her to Emory in Atlanta to the heart cath lab so they do a work up.

    She looked that man straight in the face with a calm, steady delivery that she was gonna do no such a thing. In fact as soon as was practical, she was going home. She did on Thursday afternoon and lived till Saturday morning.

    Oh, BTW she had a living will (which my wife and I have) I highly recommend it.

    Miss that lady


  • The problem with everyone "facing this decision" in their mind, or usually even in experience, is that the thought drifts to parents or elderly relatives. They lived a full life, but at the end, need to realize, etc.
    What if it was your kid? What if your son or daughter was in a car wreck? Or had a terminal disease? For one of my parents, I'll join the chorus – I'll pull the plug with no hesitation. For the other parent, I'll do it while weeping inconsolably. BUT, for my son or daughter, I'd spend $1 million for 5 more minutes. I'd kill others for a day. I would do anything, literally anything, for any small amount of time. So would any parent, if they're being honest.
    If you think my response is extreme or don't have children yourself, ask yourself how these tragic responses above would look if you didn't even get to say "at least they lived a full life".

  • My mother is a home care hospice nurse. She's seen plenty of death of people that waited too long, those that have chosen to go out peacefully, and everything in between.

    She constantly reminds me that when she's in the same situation that I should always err on the side of hospice too early rather than too late. While of course you can't say for certain that people are acting irrationally when pursuing diminishing returns with end of life care, I trust her as close to first hand experience as it gets.

    She's see enough individuals and families go through the process of death and grieving, I think, to make a somewhat objective judgement that expensive end of life treatment is not often worth it.

  • watching live broadcast on al jazeera. Remarkable stuff. I can't remember watching this type of excitement since Yeltsin had tanks shell the Russian parliament live on CNN. Just finished watching Mubarek's speech. He is fucked. So out of touch. "I'm going to appoint a new government tomorrow." Hilarious. This weekend is going to be historic. This is awesome. Finally. The first real step to peace in the ME. Of course, Netanyahu was quoted today as saying that he didn't think the Arabs were ready for democracy. Ah! Who wouldv'e thought that the jews would be trying to preserve authoritarianism. Facts truly are stranger than fiction. Go Egypt!!!!

  • Both my parents died slowly from lingering diseases. The greedy creepy doctors leeched every dime they could out of them while doing essentially nothing.

    American medical care is pathological. We need to shut down the medical care when someone is terminal. Give the person a morphine pump and tell 'em "You're going to die. Nothing anyone can do will save you. When the pain gets too bad, put the morphine up to the maximum setting."

    No one wants to do that.

    People who spend a quarter of million dollars on terminal patients should be tried, convicted of fraud, and shot by firing squad.

  • On August 11, 2001, after suddenly behaving very oddly and getting an emergency room CAT scan, my 80 year old mother was diagnosed with a brain tumor, a fist-sized bilateral glioblastoma multiforme. In the hospital, doctors admitted that brain surgery would leave her severely disabled, but would not get all of the tumor, which would return and possibly metastasize. Back then, the mean survival time for patients with this tumor was 16 months. It was an easy and unanimous decision: do nothing except keep her comfortable while the inevitable played out.

    Moved to a nursing facility, she lost a little every day: her ability to feed herself, then to talk, then to remain conscious. On a Thursday, the hospice nurse said death could come "any day now." The following Tuesday, a friend woke me. "It's your uncle; he's calling to tell you that your mom died this morning." Handing me the phone, she said "My friend just called and said somebody flew a plane into a building."

    My mother died on September 11, 2001. For the next few years I heard or read "9-11" at least once a day. Quite frankly, I wish she had died on some other day, but I don't doubt for a minute that just letting nature, cancer, run its course was the best thing for her.

  • Since we done shot NPF in the butt…

    What is the most democratic Arab nation in existence today? Would that be…Iraq? Could it be ketchin' as my Granny Mamie used to say?

    Don't shout Mr Netanyahu down when he's preachin' good.

    Look at what the scummy Gazans did with their precious franchise. They voted in those murderous bastards, Hamas.


  • bb, let me ask for your definition of "democratic" in this case. Are you wondering who has the most fair elections? The most egalitarian laws?

    Is it still a democracy if the Peepul, godblessem, vote for a religious idiot who wants to oppress part of the populace, like Saxby Chambliss or Jim Inhofe?

    Gaza didn't have much to choose from, by the way, and when a group spends almost all of its budget on social infrastructure, as Hamas does, it does win votes. Think of the first Godfather movie, when all the neighborhood folks are delighted to see the Don — after all, he takes care of them. Since more people live in Cleveland than in Gaza, it doesn't seem that hard to pull off.

  • well bb look how many scummy murderous bastards the US has voted in. Many people in every land are conservative in the manner of hating every one that isn't in there group and wanting those people dead.

    I would day Iran and Turkey are the most democratic non-Israeli middle eastern states. Wait you said Arab, so Iran is not in the mix — as far as Iraq, can a country be considered democratic with 50,000 foreign troops occupying their lands?

  • I work directly with people with Alzheimer's disease, other forms of dementia and various other terminal illnesses and conditions. Hospice care is a blessing for these people and their families, yet I meet many doctors who truly believe that subjecting these patients to painful and in many cases useless medical procedures is doing everyone a favor. "Betty" has full-blown AD yet doctors felt it necessary to hospitalize her for her heart condition. During this hospital stay, six hospital staff members had to hold her down while they catheterized her. Imagine how painful and terrifying this was for Betty! And pointless, since Alzheimer's disease is going to kill her if her heart does not.

    I blame pop culture for part of this stupidity and cluelessness about hospice care. On TV, in movies and other media, we are shown people having miraculous recoveries from terminal diseases and other conditions. We are shown people having CPR performed on them, then seconds later they hop to their feet and they're fine! Doctors have a different slant; they operative from a "curative" perspective in that death means failure and any condition must treated aggressively no matter the cost to quality of life.

    I say: perform medical procedures on the terminally ill ONLY if the person stands a chance of recovery and it will add to quality of life. If not, then make the person as comfortable as possible with good drugs and food and massages and anything else they find pleasurable, then allow them to die.

  • My dad passed away back in the spring, the day after I gave my final exam to my physics class. He died of liver failure, brought on by 20 years of taking prescription medications to contain his blood and heart problems.

    The doctor was up front with him and my mom. He told them there wasn't much that could be done, and they elected hospice. And by the way, those hospice people make the Earth glow.

    I don't know if I could do that. My mom and dad were/are far stronger than me. When it was his time, they accepted it and he walked away.

    I miss my dad.

  • My grandmother had two strokes, one small, the other massive. She is otherwise completely non-responsive but can breathe on her own, so my crazy Catholic family brought her home and she has a full-time, live-in nurse. It is a weird combination of heartrending (because the woman was a fireball) and morbid, because they're essentially waiting for pneumonia or whathaveyou to do what none of them have the guts to do- let her go. I have been clear, in writing and in person, that this is never to happen to me, but am grappling with the fact that this situation is what my mother, with her complete disregard for diet and exercise and blood pressure, is baiting for herself.

  • Perhaps because I experienced the deaths of four close family members who ranged in age from 19-84 by the time I was 16, I learned early to accept death as an integral part of the cycle of our lives. Even those who died when children still had the opportunity to experience our world and to share their curiosity and wonder with the generations before them. Who is to say that life was not full? What defines a life as full and rich? I do not believe it is just its length of some quantifiable list of accomplishments. It may be simply the joy that your life brought to someone else regardless of how long that joy may have lasted.

    This post should remind all of us to take the time now to think about how and act on defining we want our final days of life to be spent. I've had an advanced directive since the Schiavo battles. It is very clear that I am not to be maintained by artificial means. My life, sustained through long-term (for me, greater than 7 days) forcible and mechanical means, is not worth the life of someone who would be able to recover and walk away. If the choice is to keep me breathing just to be breathing or to allow someone else to walk away and function, then my time has come to pass.

    Each of us must die. This is not an option. The question for me is how to determine degree of dignity and respect I insist upon having in that final time.

  • I am an Emergency Physician on the outskirts of Chicago. I am regularly confronted with this issue, and I honestly don't know where to begin my comments, but here goes:

    First, the whole "end of life care" issue was a golden opportunity for people of all political stripes to have a grown up conversation about an issue which ill affect everyone at multiple points in their lives. Such a debate could have had untold benefits in improving the costs of health care and the plight of those facing end of life decisions. But instead we got wall to wall pant-shitting by Fox, Beck, Limbaugh and Palin.

    As someone earlier in this thread alluded to, we treat our pets and convicted murderers with more compassion than we are allowed to treat ourselves or our family. I was raised staunch Catholic, so naturally I'm now an unapologetic atheist. I am not afraid of being dead. At all. Having watched the process of dying, up close, for more than a decade, I fear the process of dying a great deal. If religious minded people feel that it's a sin to purposefully accelerate the inevitable, assist in suicide, etc. I have no issue with them abiding by their belief until the end. Must we force others, without those beliefs, to abide by this? There was a study performed, asking older hospital/nursing home patients about their fears and wishes about dying. Almost none of them desired aggressive measures to prolong their life if there was no reasonable hope of significant recovery. They feared being alone, being cold, and being in pain. Essentially, they feared exactly the kind of death people are routinely subjected to in the modern medical system.

    The comments in this thread are a little one sided though. I have personally had the "do not resuscitate/hospice" discussion with numerous patient's family members, told them exactly what would be involved in CPR, etc with their 80+ year old family member, and the absolutely dismal statistics on their recovery, and offered comfort measures, (pain control, anti-nausea meds, medicine to alleviate the feeling of shortness of breath) .etc. And they will still choose CPR, intubation, etc. I believe the perceptions from TV are in no small part to blame. There's a huge element of denial, diffusion of responsibility (wait/do everything til his wife/my brother/his brother get's here!)

    I think a "Right to Die" Bill would be well received by the public, unfortunately just about all of our elected leader are crazy asshats or cowards, so I don't see that happening anytime soon.

  • Alvin Brinson says:

    Followup to the comment I left at the top:

    One person said we all thing of a parent or elderly relative. In my case, yes, it was a parent I referenced. However, he was 64 when he finally passed away. He was "too young" to receive retirement medicare, which made treatment very difficult. His health had been deteriorating for years before it got critical, so he hadn't been able to work, and so had no private insurance and had filed for early social security. The $750 or so he earned per month DISQUALIFIED him from Medicaid. It wasn't until he was in ICU for 6 months (at an expense of over $1million of which we were only able to pay a fraction), before we were able to get him Medicaid, based on admission to a nursing home. At that point, nobody had yet even diagnosed the real issue (chronic leukemia).

    The point is, a decent healthcare system would have spent the money and resources on a healthier patient getting a diagnosis and treatment than can improve the quality of life, rather than WAITING until they are critical and costing millions of dollars in end of life care to kick in. Had my father access to proper medical care, his CLL would have been diagnosed years earlier, at which time it could have been managed, and he could have lived another 20 years, as the average age of all his older relatives was well into the 80s.

    The "Right to Die" is great and all, but damn, we need a right to get diagnosed and treated BEFORE it reaches the point where we're fighting pointless fights at a much higher cost.

  • When my 39-year-old brother was terminal with leukemia, some of the decisions were driven by insurance policies. He was not on life support; he was DNR; but it was clear he had days or weeks only. His care, keeping him comfortable and clean, was too much to accomplish at home. His insurance didn't cover hospice care, which is what he really needed. But it did cover 100% of hospital in-patient care. However, hospitals can't/won't keep you there if they're not treating you. His doctors were in a terrible balancing act of keeping him as long as possible, so he could receive palliative care in the guise of "treatment," without putting him through difficult and expensive zero-chance procedures.

    I don't fault any of the medical systems or personnel for what happened to him – his disease had a very sudden onset and was very aggressive. His doctors did everything they could But everyone had to jump through hoops to find an affordable way for him to die. I wonder if some of these stories of excessive treatment might have this common thread.

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