I wish I had better news on this snowy morning, but I don't. Here are two bad items from abroad:
Holland has officially relaxed its rules for killing people with dementia. (My own strong suspicion is that they've been euthanizing them already, but this is official.) If you state ahead of time in writing that you want to be killed if you get Alzheimer's or some other form of dementia, then the doctors will legally bump you off under those circumstances. It won't even be bending the rules. It will be officially allowed by the rules. (Try not to choke laughing at the linked article's statement that euthanasia is allowed in Holland only under "strict conditions.")
I think that counts as "choice devours itself." Yeah, sure, it includes a nod to "choice" because you're supposed to have chosen to die ahead of time. And yes, it's a logical extension of dehydrating people to death based on their statements ahead of time. In fact, viewed in an entirely secular, utilitarian way, a lethal injection is more humane. (That is not to be taken as an endorsement.) But in either case, what we're doing is killing people who are mentally incompetent to ask to die. Which really isn't choice.
Our second item is a bit old now and comes from Quebec. A palliative care facility in that province that initially said they would resist the pressure to perform euthanasia at their location has changed its mind after polling its employees. I can't tell if this is the same institution at the University of Montreal that resisted the new law or a different one.
The centre says on its website that while it initially refused to offer the service, it recently changed its position after consulting staff and volunteers.
That sounds like a principled way to make a moral decision!
It says that 60 per cent participated in an online poll on the issue, and of those, 61 per cent were in favour of helping terminally ill patients who wish to end their life.
Not exactly rousing support, but who's counting?
The centre's board of directors voted unanimously in support to allow medically assisted suicide as a last resort when all other means of pain relief have been exhausted.La Maison Aube-Lumiere says it wants to give itself enough time to learn the new rules surrounding doctor-assisted dying and properly train staff and volunteers.
Because murder must be tidy.
The article doesn't say whether individual doctors at the facility will be required to participate. I'm going to guess that they won't, but that they will be required to turn over the patient to someone else to kill them. Let me also add: I'm seeing nothing here about the patient's wanting to die. Just that the patient is suffering and the medical staff think that other means (than killing) have been exhausted. The exact involvement of the patient or the family is unclear, at least from this article.
Right now palliative care facilities in the U.S. often dehydrate patients to death. That's just a fact, supported by numerous anecdotes both from families and medical staff. In fact, usually one will be told that that's a natural way to die. I don't see the lethal injection culture on the move quite as fast in the U.S. as in Europe and Canada, but it really is plausible that it will come, given what we already do here. Here we still keep up the pretense that nobody is actually killing these patients.
I foresee a day (in some ways that day is already here) when family members who want to care for their terminally ill loved ones will have to do so at home in an environment where they have some control over what is done to them. This becomes complicated when the loved one is unable to eat on his own. But certainly dementia patients must not be left to the tender mercies of a secularized medical profession. And the word "secularized" is not meant to imply that an institution with a "Catholic identity" or other alleged Christian connection is necessarily safe.
For the moment we have the pretense in the U.S. that whether you are murdered or not when you are ill and vulnerable is up to you. Make use of that. Put it in writing that you don't want to be killed and that you do want nutrition and hydration, and make sure your family members know. In states with a durable power of attorney for health care, assign that DPA to someone you trust. These protective measures will help, here, for now.
P.S. I'm succumbing a little to the urge to snark here at the end, but let me just point out that, while the Canadian Supreme Court has now required assisted suicide throughout the country, Quebec was ahead. It is the most "advanced" province in this regard. The Catholic identity of Quebec, if anything, has actually been a predictor of its extreme social liberalism rather than otherwise, as it has fueled the perception of being different in Canada and needing to use political progressivism to express that difference. I'm not saying this is generally the case for a country's or region's Catholic identity. (Poland is an example in the other direction.) But I am saying that those who long for a confessional state should probably ask themselves why so many erstwhile confessional states in the world are in worse disarray than the "individualistic" Protestant areas in the U.S. (Compare the relatively crazier Catholic Ireland to the relatively more conservative North Ireland.) My own theory is that this is the "virus principle," whereby the centralized structures are taken over by an ideology alien to the founding principles. Another, complementary theory is that progressive Catholics claim that they represent the "otherness" of Catholic identity within a surrounding or nearby Protestant country.
Comments (19)
I wonder why the left can't take the same "humane" procedures they tout for euthanasia and use them in capital punishment cases? I've never heard an argument from them that euthanasia is "cruel and unusual".
Posted by Glen | January 12, 2016 1:27 PM
They do, actually. A lot of capital punishment is carried out by lethal injection.
In fact, a weird, weird case developed in Belgium, which doesn't have a death penalty. A prisoner (I forget what he was convicted of) said he'd rather be euthanised than serve a life sentence in prison. Since Belgium has pretty much an anything goes euthanasia regime, they were actually going to do it, and then it was called off because the public in Belgium was freaked out by the resemblance to capital punishment. But of course if he were innocent, sick, and said his life was not meaningful to him anymore, that would have been fine.
These oddities have caused death-watcher Wesley J. Smith to coin the phrase "cruel and unusual death with dignity."
Posted by Lydia | January 12, 2016 1:57 PM
Actually, I am tempted to go the other direction. If dehydration is so benign a way to kill someone, let's ditch the chair (which is nasty) and hanging and lethal injection, and just dehydrate the condemned criminal. Heck, I'll even throw in a certain modest amount of morphine - to be self-administered, and let HIM decide whether to use too much of it early and not have enough for the end.
For the life of me I cannot figure out what the deal is with the law suits about various concoctions of lethal drugs, when an overdose of morphine is painless and clearly works very well - and if somehow he seems to be coming round instead of dying, just up the dose. What's the problem? Do we think too much of an overdose is some category of moral outrage? Is it not painful enough? Is it too expensive? Why is this so hard to figure out?
Posted by Tony | January 12, 2016 8:48 PM
I would risk disobliging comments and say again that the present situation follows from the fundamental error of dialogging with the non-conforming (to the Hippocratic oath) doctors.
Now, a most blatantly non-conforming doctor that performs abortions and euthanasia and experiments with fetal parts and manufactures babies , he is a respectable colleague even to a most conforming Catholic doctor. Looking on, the public can not tell one apart.
Against the advise of the ancients, the religious right in America did not separate itself from the blatant sinners. The resulting confusion was inevitable and so was the subversion of almost the entire medical establishment. Could one say even of a single medical research that it is ethically unobjectionable?
Posted by Bedarz Iliaci | January 13, 2016 3:21 AM
"Put it in writing ... and make sure your family members know."
Good advice. And I would add, never, ever, EVER succumb to temptation, in a distraught emotional state over seeing a loved one on a breathing machine and feeding tube, and say something stupid like "I would rather die with dignity than be kept alive by machines!", because people - including one's close relatives, and sometimes *especially* one's close relatives, as in one's own mother for example - might take you extremely seriously and do her d*mnest to kill you if and when, God forbid, you wind up in such a predicament and doctors are saying your chances of survival, and a 'good quality of life' afterward are less than 50/50.
My wife and I found ourselves fighting tooth and nail to prevent this from happening to my sister-in-law some years back (prior to the T.S. case), over complications related to lupus. My sister-in-law had made such a statement a few years earlier while seeing her father on life support according to her mother (I've never doubted she said it because she was always prone to that sort of thing, not putting a whole heck of a lot of thought to the implications of what she was saying), so when the docs told us we needed to decide as a family whether or not they were to resuscitate her in the likely event that she would 'code out' in the next few days, my MiL was insistent, based on SiL's earlier statement, that she *not* be resuscitated. When I tried to inject reason into the discussion, stating that perhaps we should ask Beverly (unlike T.S., she was aware, and could communicate by lightly squeezing your hand - once for yes, twice for no, that sort of thing), MiL stomped out of the meeting saying she would have no part of it (along with a few choice words) because she already knew what her wishes were since she'd already stated them to her years before.
For my part it was good riddance! We did consult Beverly's wishes in the matter (nurse present to confirm everything), and wouldn't ya know it, her whole opinion, finding herself in dire circumstances now, had all of a sudden changed: she wanted to be given a chance, yes, yes, yes, yes, several times over. Good thing too, because, long story short, she did code out a couple days later, by which point I had picked her oldest daughter up (next of kin) and rushed her to the hospital to sign the resuscitation order. SiL lived four more years after that, and had what most anyone would consider a very good quality of life for the greatest part of that time.
All of that said, I'm convinced MiL thought she was trying to do the right thing by honoring SiL's stated intentions, letting her 'die with dignity' and all this, but some people just can't be entrusted with those kinds of decisions on behalf of another, and she is one of 'em. ...
Posted by Terry Morris | January 13, 2016 3:37 AM
Well I see I didn't make clear that SiL was never placed on life support, even after she coded out and had to be resuscitated. The docs had merely told us that *very likely* she would have to be on life support post-resuscitation, which was explained clearly to Bev, and again the answer was as emphatic a "yes" as she could possibly muster in her extremely weakened condition.
But this is an extremely relevant case because, even though I personally had asked both doctors and nurses whether it was possible she merely had a restricted airway (due to the way she was laboring in her breathing for three weeks - yes, three weeks, 24/7, no relief, gasping for tiny breaths - it was horrible to watch and not be able to help her!), and they all told me over and over again that no, that was not her problem, ... that is exactly what it turned out to be. A simple restricted airway. Once they cleared her airway during resuscitation, she was out of the hospital and functioning pretty normally almost lickity split. True story!
Posted by Terry Morris | January 13, 2016 4:09 AM
Wow, clearing the airway is part of a basic first aid course.
What _routinely_ happens (and people need to know this) is that the word "machines" is taken to include any tube-delivered food and hydration. Hence, even a simple NG tube (and they really are simple) much less a PEG are called "machines." This is silly. Even a distraught person who says, "I wouldn't want to be kept alive on a machine" is probably reacting to seeing someone on a ventilator. A feeding tube just ain't a "machine." But people have a phobia about "machines" much less "tubes." Heck, I know children who are on feeding tubes as part of their daily lives. Some even go to school, run around, play, and receive tube feeding when they come home, through a permanent port.
Where we are headed in the West though is that this will _not_ be up to you. For example, if you have a heart problem and have a stroke, it becomes increasingly difficult to find docs who will perform the simple surgery to insert a PEG. Letting you die painfully by dehydration--no prob. Performing a minor surgery to insert a PEG port so that you can receive the proper amount of food and water, or sometimes even an NG tube--oh, no, no, you might die of your heart condition, and then they could be sued.
But what it will move to is what's happening in Canada, England, and Europe: First, that your wishes become irrelevant to what "treatment," including food and water, you receive. Then, that the use of a lethal injection becomes routine as the most humane way to "treat" a patient who is suffering, has little hope of recovery, has dementia, blah, blah. (To be clear: England hasn't formally legalized the lethal injections and in fact just defeated an attempt to formally legalize assisted suicide, but there has been a lot of monkey business with advisory statements from the prosecutors that they won't prosecute assisted suicides.)
Posted by Lydia | January 13, 2016 9:13 AM
Not just part, it's the first dang thing! ABC.
Posted by Scott W. | January 13, 2016 1:05 PM
That's how the Long March works, and why conservatives need to stop being merciful to seemingly decent people who are not at least generally in confident and full agreement with them. It's something we see with "Christian" advocacy groups like Focus on the Family and CBMW and in plenty of Christian institutions in the medical and educational sectors.
Wheaton College's handling of that professor is a great example of how conservative institutions can fight back. At the moment some starts proposing a shift in the name of whatever virtue they wish to signal, can them. This is one time where it's better to burn an innocent person than let a guilty one go. This isn't prison, but choosing potential leadership positions. The moderate entryist today will be the moderate or liberal who lets in a whole coterie of radicals tomorrow.
Florida's handling of doctors is also a good way to regulate them. Want to be in a licensed profession of trust? The state won't let you do things like even so much as harass your patients on gun ownership. Since it was constitutionally established that that is a licit regulation on them, conservative states should go the next step which is that anyone who even so much as utters words in favor of euthanasia, while a licensed professional, can be brought up for a breach of professional ethics.
Posted by Mike T | January 13, 2016 4:51 PM
I'm going to sound a slight note of disagreement here. Slight, but firm.
True, an NG tube isn't as such a "machine" as that word is normally understood in today's parlance. It has no moving parts, and doesn't need oil or anything. It is, however, nearly always attached to a machine to deliver the benefit you plan to achieve with it, so the system as a whole typically involves a machine.
But that's irrelevant to what's underneath the concern people are trying (often unsuccessfully) to convey, which is that it is a medical intervention. It is not simply drinking water or eating food, it is bypassing the normal means of getting these, i.e. through the mouth and using the tongue and the swallowing muscles.
Why does that matter? Well, it doesn't always matter. That's what is deceptive about the issue: sometimes the fact that you need to deliver food through an NG tube, or an IV for that matter, is unimportant. You do it, and go on about business.
But sometimes it is important. As a medical intervention, an NG tube (or PEG), can theoretically become not worth the benefits to be gained by using it. At that point, using it can become "extraordinary means" of prolonging life. Let me give 2 cases that are from my own experience. When I was a kid, my grandfather was dying of cancer. He was an old ornery blue-collar worker, literally "off the boat" from Europe, and did not tolerate medical stuff well. When he was unconscious they put a tube in him for whatever reason (maybe fluids but I don't know for sure) but any time he came awake he pulled the tubes out (both the NG tube and the IVs). He was probably only partially cognizant of what he was doing, but (a) for the part that was cognizant, tolerating the tubes was a no-go, and nothing doctors and nurses could say would ever change that. And (b) for the part that was just loopy, being tied up by cords and such was an oppressive state that probably triggered all sorts of stuff in his brain. Anyway, at some point the cancer was killing him fast and the tubes were not going to save him for more than a few extra days at best, but the wear and tear on his body of his pulling them out and the nurses putting them back in was likely WORSE (not only is the NG a very, very nasty experience going in, often with vomiting and abrasions to the tissues, but there can be complications like kinks, and ulcerations from it). The extra food and liquid they were going to deliver, if you could keep the tubes in, weren't going to be that beneficial (what with various systems shutting down), and the only way you COULD keep them in was to knock him out, and that meant, for one thing, no further opportunity for a priest and a last confession. Better to be conscious and dying in one day than unconscious and dying in 4, given all else.
The other case is from me. I had a long stretch of being in a hospital in and out repeatedly, and for quite some part of that time, I had an NG tube, and usually 1 or 2 IV tubes. Well, I hated the NG tube going it, but it was necessary for my survival. What nobody mentioned, though, was that sometimes (not particularly often, but it's known) it can end up affecting a nerve in the nasal passage, and you end up with a massive headache. Well, it's one thing to have a massive headache for a few hours or a day or even two, but what about for literally weeks? And even the hospital's painkillers didn't deal with it. It turns out that I was not terminally ill, but if I had been, I can guarantee you that at a certain point the benefits of prolonging life slightly WITH the NG tube would have been less than the benefits of being without the NG tube. At that point, continuing the NG tube would have been an extraordinary measure and no longer something to simply assume that yes, of course we use it.
My point here, in part, is that "feeding" a person through the nasal passage with a tube is a medical act, like hydrating through an IV, not simply an act of care like feeding them with a spoon when they can no longer hold a spoon. People don't eat through their nose. As a medical act it has medical pluses and minuses, benefits and drawbacks, and these need to be considered. There are side effects, like those of other medical procedures. There is a cost/benefit analysis.
My point of divergence also relies (typically) on the person being close to death to have the benefits from the NG tube not being sufficient to mandate using the tube. But that's kind of significant: everyone eventually is going to be darn close to death from something or other. For many people, there will indeed be a real moment where continuing to use the NG tube (or other medical intervention) does NOT represent a morally obligatory option. It may be a point where death is just a very few days away (even with the tube, that is), but that point does occur. Insisting that Dad or Grandma MUST continue to suffer with the tube after that point could be a mistake.
Posted by Tony | January 13, 2016 9:26 PM
Well, we're probably going to disagree about this on some specific cases, Tony. If you couldn't eat and drink normally for weeks, and if the NG tube was giving you a horrible headache, then the minor surgery for a PEG tube would have been a heck of a lot more worth it than your dehydrating to death over ten days, which is not only no picnic to experience but is also a barbaric abrogation of the hospital's responsibility to care for you. Which means not leaving you to die of dehydration and/or starvation.
As for cases where someone is "dying," those are pretty darned tricky to know--whether, in fact, leaving the person with literally no food and hydration is going to kill him in some important causal sense or not. Medical people will tell you _falsehoods_ about this. I assume they believe them, so I'm not going to call them lies, but definitely falsehoods. Such as that it is natural to dehydrate to death over a period of 10-14 days.
If someone is going to die *of cancer* in two days and you can give him ice chips that will melt slowly, keep him comfortable, ease his dehydration, and not choke him, rather than tube feeding, that's probably fine. You aren't killing him by not feeding and hydrating him.
If someone has a stroke and keeps trying to get out of bed and asking for water by writing notes, and the doctors say he can't have anything because he'd choke and refuse to implant a PEG because he has a heart condition and they think their lawyers wouldn't like it, then leaving him to develop a fever from dehydration and die even in four days, while he meanwhile keeps trying to get a drink of water and suffers, is not only horribly cruel but also a failure to give basic care.
I want to tell you in all seriousness that your attempt to be nuanced here, even if you are right in *some* specific cases, has the very real potential to get you or someone you love dehydrated to death over a long, agonizing period relieved only by enormous doses of morphine to ease the pain of dehydration (and which will also hasten death), and Atavin (an anti-anxiety drug also used in cases of terminal sedation with dehydration), which the medical professionals will tell you falsely is a "natural" way to die. Asserting that nutrition and hydration given by tube are "medical treatment" is the medico-legal concept (and I believe a false one, despite your arguments) that has given us many a medical murder, with complicit but well-intentioned loved ones on the side.
Posted by Lydia | January 14, 2016 9:02 AM
Let me also point out that the drugs that will be given to ease someone's pain and anxiety during dehydration death would very likely also be sufficient to make someone "out of it" enough not to pull out tubes. Which makes it an interesting question why the medical profession decides to medicate the heck out of someone to get him through a dehydration death but acts all horrified about medicating someone to make him leave his IV tube and/or feeding tube alone.
Posted by Lydia | January 14, 2016 9:07 AM
If it's benign, it should also be a perfectly acceptable way of getting enemy combatants to talk. I mean, it's benign, right? If it's ok to use on an elderly patient who is accused of no capital offense, then surely it is right and proper for someone accused of terrorism.
Posted by Mike T | January 14, 2016 9:27 AM
It is perfectly fine for reasonable people to disagree on specific cases, cases which represent borderline and edge cases. In matters of degree (which these are) there will necessarily be gray areas for which different people - with their different pasts, different experience, different peripheral values (even when their basic values are in complete agreement) - will arrive at different judgments on the particulars. This is normal and does not represent a failure or dispute of principle.
And that is EXACTLY the reason I concluded with insisting that Dad or Grandma MUST continue to suffer with the tube after that point could be a mistake. There is no such thing as mathematical certainty that someone is "going to die within the next 7 days (absent a miracle)" - unless maybe things have progressed to where it is pretty obvious they are going to die in the next 12 hours. That is to say, when a person is even 7 days out, it is not clear and definite that they are 7 days out, you only find out later when they passed that mark.
But people neither need mathematical certainly, nor usually ask for it, to make appropriate moral judgments. A "reasonable certainty", which would be a pretty comparable to the the courtroom requirement "beyond a reasonable doubt" is adequate to make a decision, for example, to sign a DNR order, and thus to refuse to initiate medical care that otherwise would be more or less automatic. In SOME cases, if you have a person suffering from shut-down of multiple organ systems, you can actually be reasonably sure that death is imminent in the sense of less than 4 days out. Let's put it mathematically: there can be outcome charts that say "with a 95% confidence level, a person with these levels of x, y, and z toxins dies within 4 days." Want a 98% or 99% confidence level? Wait a day, the new levels of toxins will give you a higher confidence level that death is within 4 days.
In most cases, giving food and water does not create its own health risks on top of whatever they are dying from. But not all. For example, a person dying of liver disease can get to a point they are drowning in fluids from the inside, because the liver functions that regulate fluids against other things (electrolytes, hormones) have shut down. Where giving them water (not "too much", just any water) will further upset the already poor balances. They are beyond the point where additional water is going to help them medically (regardless of how it is delivered).
A healthy person does not die from dehydration in 3 or 4 days, so denying someone water for that period is not normally "killing them". However, a very sick person could. That is, not giving that very sick person water could contribute to their earlier death, where they might have survived beyond 4 days with water, and they could not without it. That's your entirely legitimate "causal" concern above. But it is also true that in some cases, you can be medically sure that giving or not giving water - for their last 3 or 4 days - will not materially matter to how long they are going to last, (or giving them water would actually hasten it), because lack of water isn't going to significantly play into how the disease is going to kill them. At 2 weeks out, there is still a LOT of variation on end games, as compared to 3 or 4 days out.
I completely agree with this point. The medical profession - especially nurses, from what I can tell - are just sold on a false picture and will sell it to everyone else. They buy into this 10-14 day stuff, but from what I can see if they are saying that a person is 14 days from death what they really mean is, approximately, that 80% of people in this condition will die within 2 weeks, and the other 20% will die later. There is just too much wiggle room here. And a person who is going to die in 2 or 3 weeks is surely not "dying naturally" from dehydration.
So we need to be on our toes and force the medicos to be more precise and more forthcoming about REAL information, not guesswork and broad approximations or vague generalizations. And we need to be cognizant of the fact that the farther out from death you go, the less certain the timing gets, so there is a big difference (in the kind of confidence we can have) between a prediction that death is within 4 days, versus within 2 weeks. We need to not accept their stuff at face value, we need to be more careful than THEY are used to being these days.
So, in effect I am suggesting that if the nurses are saying "you don't need to give her water, she is going to die naturally in the next 14 days", don't accept that. But if they are saying "she is going to die within 4 days and giving her water won't modify that appreciably", that could be a morally valid basis to decline to initiate an NG tube or a PEG. As long as you were confident they were making that judgment of timing on a reasonable medical basis, to begin with, and if they can explain why making water available is not an appreciable factor to the oncoming death process.
Well, I too am horrified by the long, agonizing period scenarios like 2 weeks (or longer!). I am pointing out that there is morally significant difference between (a) what is knowable about timing of death, and (b) what is causal for death, over a 4 day period versus over a 14 day period. It would be unreasonable in the extreme for someone to insist, for example, that it is impossible for death to be so imminent that we can know with sufficient certainty that "not making water available will not affect the outcome"; for we are often able to say that death will be within a few hours, and that is a short enough time to know that the water in & out processes are effectively irrelevant in that period. All I am saying is that in enough cases, we can push that period out to about 3 or 4 days while still retaining sufficient moral certainty that ongoing hydration won't appreciably change the outcome.
Posted by Tony | January 14, 2016 1:57 PM
Where I would get extremely aggressive would be if they put an npo order on the chart. This is especially likely in cases of stroke, but those are not the only cases. If family members and nurses aren't even going to be allowed to give small sips of water, ice chips, etc., then it is _highly_ problematic to refuse to place a feeding tube of any kind over a period of several days. It can lead to spiking fever, raging thirst, premature kidney shut-down, etc. IV hydration _may_ ameliorate this and be sufficient, but not necessarily, as multiple anecdotes attest.
Posted by Lydia | January 14, 2016 3:39 PM
NPO orders notwithstanding, extreme aggression can get you canned if you aren't, at the same time, extremely careful about it and you're not a blood relative. I know, it's happened to me; a hospital staffer ousted me for raising an issue over her helping a long lost niece of a very good friend of mine sign his whole life away to her while he was *clearly* in a drug-induced altered state of consciousness and totally confused.
It was just blind luck on my part that I was there to visit when the niece and staffer came in with all the relevant paperwork - non-resuscitation orders, powers of attorney and whatever. Up until this point my wife and I had been overseeing his care from the time he was placed on a ventilator and feeding tube approximately six weeks before. By this time he was off the ventilator and feeding tube, but had developed other complications (internal bleeding for one). I listened to this nonsense for about five minutes before I interjected with the concern that their timing was totally inappropriate given my friend's (again, very obvious) very altered state of mind. My concern was mildly expressed initially, but things quickly deteriorated, and the staffer insisted I leave the hospital, which I did since, by this point, I judged any further resistance on my part to be counterproductive. When I got home I had an email from the niece waiting on me that read, among other things, that I had been removed from the visitor's list and so forth; that I was *not* to attempt to inquire about his status in any way.
The other side of that coin is that extreme aggression on the part of a relative with purely self-serving interests can get said individual canned too. It took about a week, but I was able, through connections in the healthcare profession outside of the hospital in question, to reverse all of this and restore our former status. Alot of pressure was put on the hospital in question, and for that I am eternally grateful. My wife and I oversaw our friend's treatment the rest of the way through, which was a long ordeal involving several months of physical therapy. He is now 73 and still living on his own.
But I agree that one needs to be aggressive - assertive, I should say - in certain kinds of circumstances. The staffer who ousted me accused me of being a "control freak" in the hospital hallway, so by this point I knew I was going nowhere with her (or the niece), and needed the help of professionals. Here again, blood relatives, and/or, next of kin are not necessarily the best choice (not that they gave our friend an honest "choice" at that point) to oversee one's care in such circumstances. But I had known our friend, and had had a close personal relationship with him for a long time, and was intimately familiar with his heath issues. Unlike his niece, may God forgive her!
Posted by Terry Morris | January 15, 2016 10:09 AM
Yes, by "aggressive" I meant something like "assertive advocacy" and was assuming without stating it that we were talking about someone with at least prima facie standing to act as a patient advocate. This will often be next of kin, depending on state laws, but ideally one would have a DPA for healthcare in hand. My words were meant to refer to questioning healthcare decisions and not passively accepting the suggestions of the professionals, speaking up, disputing, etc. Obviously, if you have no actual legal standing, they can just kick you out. But if you do have legal standing, you may have to be very insistent. I have an on-line friend who had to literally sit with a dying relative over a period of weeks to make sure that the IV was not removed and dehydrating allowed to proceed. The medical professionals reluctantly left it (it was causing no apparent distress to the patient) but were continually carrying out a kind of psychological war against the relative to allow it to be removed, including coming in and "talking" to the "poor, poor" patient (who was unconscious) about how she would surely like to be allowed to go, etc. Had the relative not been aggressive, in the sense of both stubborn and control-freakish to the point of hovering, they would _undoubtedly_ have removed the IV hydration. That sort of thing happens fairly often, based on the anecdotal evidence I have received. Relatives have to keep saying, "No, no, no" and hopefully having documented evidence of the patient's wishes to bolster their case. In some cases an order not to hydrate or feed has been put on the chart (or a DNR that is intended to mean that, though technically that isn't what a DNR means) and only the lynx-eyed watchfulness of a relative-advocate has gotten it removed, since the doctors were violating applicable procedure and policy by putting it there without consent. Etc.
Posted by Lydia | January 15, 2016 10:29 AM
including coming in and "talking" to the "poor, poor" patient (who was unconscious) about how she would surely like to be allowed to go, etc.
And that's the big, secret bugaboo here. A person doesn't spend weeks and weeks of "not dying" because they haven't been "allowed to go" when the actions under review are merely providing food and water. This is what we need to be alert for, this nonsensical notion of dying. If a disease is killing someone, we can let the DISEASE kill them, but we can in no way help it along. If someone dies in a shorter time than weeks and weeks, because they didn't get fluids administered, then it was the withholding of fluids that killed them and not (merely) the disease. So a nurse or doctor that is complaining that this person is not "allowed to die" is manipulating the family by abusing the language about what the process of dying actually is. They are trying to KILL the patient by inaction: omission of an act of care that is your duty to provide is just as much wrong as positive acts of wrongdoing.
Posted by Tony | January 15, 2016 11:58 AM
Lydia and Tony, concerning the story of my friend, I actually defied the niece's orders and went to visit him the very next morning, and asked him point blank, "did you sign anything after I left last night?" His answer was that no, he had not signed anything. The next question was "did you *tell them* you don't want to be resuscitated, or that you want Sherry to oversee your care?" Again, no was his answer to both questions.
About this time the staffer from the night before came into the room and posted herself on the opposite side of the bed from me. She informed me under her breath I wasn't supposed to be there, and I responded that I knew that, but Robert says he *did not* give his authorization for that, nor for the non-resuscitation order or anything else. Robert then piped up saying "I didn't sign anything, I wouldn't do that to Terry." The staffer responded to Robert (in a very sweet voice - she must have had to dig deep, ha, ha) with something to the effect of 'Now Robert, don't you remember that we asked you x,y and z, and you said yes, yes, yes?' Robert was adamant that that was not the case at all. This, for me, was just further confirmation of what I already knew, that he had no idea what he was doing the night before when they hit him with all those questions.
Within a couple of minutes the staffer ordered me out of the room, and I complied without the slightest resistance because I knew I was on the brink of being arrested for showing up to start with. But I had a second conversation with her in the hallway in which I simply pointed out, again, that I would not take this lying down, and that if I were her I would back off just a bit if I cared about my job. This was not an idle threat on my part, it was very real, and I tried to convey that through my tone and expression. But did not divulge any information about my connections, which, it will interest you to know, had only fairly recently been established *through* Robert himself. My seriousness didn't prevent her from laughing in my face, though, so I basically took the position of 'you've been fairly warned, and you've got it coming to you.'
Soon as I got out of the hospital and into the parking lot, I immediately got on the horn, and the rest is history. The staffer was reprimanded, but not dismissed. Not that my goal was *ever* to have her dismissed, but I did fear that she would be a danger to other patients in the future IF she weren't dealt with pretty harshly for her actions in this case. I hope she learned a lesson *for the sake of other patients* whose circumstances are similar to Robert's.
Tony, I was told by the staffer that Robert was dying of cancer; that it was 'eating him up,' and he was in severe pain and that is why they were giving him high dosages of morphine - by relieving his suffering unto death. But the thing was that we had already established that he didn't have cancer anywhere in his body. The doctors had suspected cancer, but all the tests (and they were numerous - MRIs, PET scans, the works) said no. So my obvious question to her was "when did he all of a sudden develop terminal cancer when I know for fact that it has been confirmed over and over that is not the case?!" She simply evaded the question, saying she was not authorized to give me that information. It was all just a lie; Robert doesn't have cancer now, and he certainly didn't have cancer then.
Posted by Terry Morris | January 17, 2016 5:23 AM