Palliative sedation, an end-of-life practice that is legal everywhere
post-gazette.com
post-gazette.com
This is often confused with, but is not the same thing as, physician aid-in-dying or euthanasia. People do talk about this in hospitals, and it is appropriate treatment for many patients at the end of life if they are suffering.
The ethical principle of double effect makes this permissible in these contexts. If the aim of the treatment with a benzodiazepine or opiate is to reduce suffering, the possibility of hastening death via respiratory suppression shouldn't stop physicians from treating patients with appropriate dosages of these medications to achieve the first aim of relieving or preventing suffering.
Suggesting that this is a "workaround" for euthanasia distracts from the fact that this is not available as a treatment for most, if not almost all, dying patients. It is very different from physician aid-in-dying and is not a replacement for these other forms of end of life care.
That it has a negative outcome is (with the “proportionate” clause) secondary.
No, doctors implement the patient's wishes. If the patient would like to live as long as possible, even if in pain with an incurable condition, that's the patient's prerogative.
Notice the”futile”.
I was not (certainly) referring to cases where the person is conscious and able to make decisions. There is little "palliative sedation" in these cases.
If a patient values life for its own sake even in the presence of suffering.
A huge part of enjoying LSD at high dosage was being OK with forgetting who/what I was for a few hours. So maybe dementia will be OK too, as long as I don't stress too much about it. And as long as people around me are also cool.
However, it sounds like their relationship has become confrontational. And it might help to empathize with her. Perhaps she does have cause to feel held against her will.
Some years ago, we realized that an uncle, who was ~85 years old and living alone, wasn't taking good care of himself. He wasn't eating enough, wasn't keeping himself clean, and just dozed on the couch, watching TV. And one of his feet was gangrenous.
So we invited him to live with us, and he agreed. And we saved the foot. However, my wife is very kind and caring. But she has high standards. So there was much conflict. She argued that, because he had Alzheimer's, and because he was living in our home, he didn't get to choose when to get up, when to eat, when to wash, when to shave, etc, etc.
It got to the point that we hired a big guy who basically forced him to do what she wanted him to. It was horrible. But finally, I convinced my wife to cut him some slack. We let him grow a beard. We let him wash at the sink, rather than showering. We let him watch TV all day, if he wanted, and got him a cat to keep him company. And we made sure that he ate enough, and had proper medical care. We retained the big guy, but he became our uncle's closest friend.
So anyway, whenever I hear horror stories from caregivers, about people with dementia or Alzheimer's, I wonder how it looks from the other side. If for no other reason, because that's the side I'm approaching.
Talk to opportunistic plaintiff's attorneys about how this works. A doctor knowing they might be doing harm by providing opioids that could cause respiratory failure is opening themselves up for a world of hurt
The long lost aunt that didn't even attend the funeral, I guess could try to sue for losing her dearest relative but not sure if she any standing. Any lawyers here? If the children decide for mom, can her brother sue the doctors?
Where are you living that children are allowed to make medical decisions for their dying parent? What legal powers are the hospitals using to follow the wishes of the children? I guess the brother can't sue if those legal powers are in place.
Child in coma, doctors say it's over. Parents decide to pull plug or not. Never heard of this scenario in USA?
Also, it doesn't happen like that in all US states where the hospital makes a decision and presents it to the family, who'll need to go to court if they disagree.
http://medicalfutility.blogspot.com/2018/04/medical-futility...
> First, in California, Texas, and Virginia the burden is flipped: the families must go to court to stop the clinicians. Moreover, that is a widely recommended approach at the institutional level: announce the plan and give the family time to challenge, but do not seek permission from the court.
https://www.nia.nih.gov/health/understanding-healthcare-deci... "Joseph’s 90-year-old mother, Leilani, was in a coma after having a major stroke. The doctor said damage to Leilani’s brain was widespread and she needed to be put on a breathing machine (ventilator) or she would probably die. The doctor asked Joseph if he wanted that to be done. Joseph remembered how his mother disapproved when an elderly neighbor was put on a similar machine after a stroke. He decided to say no, and his mother died peacefully a few hours later."
"Ali’s father, Wadi, is 80 and has lung cancer, as well as advanced Parkinson’s disease. He is in a nursing facility and doesn’t seem to recognize Ali when he visits. Wadi’s doctor suggested that surgery to remove part of a lung might slow down the course of the cancer and give Wadi more time. But, Ali thought, “What kind of time? What would that time do for Dad?” Ali decided that putting his dad through surgery and recovery was not in Wadi’s best interests. After talking with Wadi’s doctors, Ali believed that surgery would not improve his father’s quality of life but would cause him pain and discomfort.*"
Given the prevalence of mental deterioration and incapacitation in many end of life scenarios, it is very common for children or a spouse to have power of attorney and decision making ability for someone who is near death.
In fact, many people take care of filing a durable power of attorney for medical decisions before it gets that far. I know I’d prefer my children have the ability to end my life if I were suffering.
The descendants. You answered that in your second paragraph.
> And the person has the right to be administered pain relievers and not suffer for months because the meds might kill them.
This isn't a right. Your just stating a platitude - If a person were extremely allergic to painkillers, a doctor could not prescribe them, even if the patient was in lots of pain.
So everyone of them (descendants) must agree? How far back, 4-10 generations? What if a fourth degree cousin cannot be reached in time, hold up everything or let the closest ones--children and or/ or spouse--decide?
I suppose those going through terrible terminal illnesses suffer enough to accept death over the suffering, but I don’t see why one should need to experience such extremes to accept the inevitable.
[0] That’s a big maybe, don’t go around self medicating serious issues based on unsourced comments on unregulated drugs [1] I know religion or philosopy can sometimes fill this gap, but let’s remember those who are skeptical or didn’t have a lot of time to prepare
Honestly, I don't think this is a problem specifically for the person with the terminal illness. So much of the difficulty comes from everybody else. American culture does not prepare people to face death, either their own or of loved ones. So a lot of my energy goes in to helping other people manage their feelings at a time when I don't have energy to spare. I want other people to take LSD or do Zen retreats or serve at a hospice or whatever they need to do so they can manage their own death anxiety.
Speaking of which, I strongly recommend the "ring theory of grief" article. The gist is that if bad shit is happening to somebody, you help them rather than imposing on them. It sounds obvious, but I promise that it's unfortunately rare. Here's the article: http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-s...
You mean not waking up again?
I don't see what is so worrying about that?
If one truly believe there's nothing after this life I'd think one should be very calm?
Edit: to be clear, I'm a Christian, - I just happen to be puzzled by why non-religious people are afraid of death (except for worrying about their loved ones and the pain of dying that is.)
At the very least, most people feel a sense of responsibility towards their loved ones, and knowing they will no longer be around to take care of them is a significant source of stress. That is how it was for my father. And if it ever comes to pass where I am terminal but still lucid, it will be the primary source of my frustration as well.
There comes a point in all our lives where we become so old that we become burdensome. If the old never died, there wouldn't be room or resources for new life and ideas to be born and grow. In that sense, it is honorable to meet death, because you are making room for new life.
If you thought you'd never wake up again, how comfortably would you go to sleep?
If we have no choice but to go to sleep, why would we want to spend those last moments feeling terribly uncomfortable?
If we face the facts that death is a part of life, and that we all must die, what's the practical value in fretting over that fact? (Aside from being wise not to do stupid things that lead to a stupid death)
There's no value at all in fretting over death once it's inevitable. There is great value in fretting over possible deaths we can avoid. And regardless, death for atheists is the loss of everything, and loss aversion is a well-studied component of human psychology, so it should be unsurprising even to a Christian that atheists are not particularly jolly about death.
>death for atheists is the loss of everything
Atheist logic should lead to the realization that from an individual standpoint, there is no possibility for the experience of this feared loss, at all. Immediately before the moment of death, you still have it all. Immediately at the moment of death, you have no conscious ability to experience the loss. Therefore the fear is not logical, it's irrational because your "total loss" is something you can never experience.
Not all emotions are valuable, some are indeed quite harmful and anti social.
Which brings us back full circle to the original point of this comment chain: that western society is extremely emotional about the subject of death relative to other societies. This tendendency leads to unecessary suffering and the prolonging of life at all costs.
The US has come very far from its founding mantra; "Give me liberty, or give me death!" has seemingly been reversed to "anything but death"
I'm not glib.
It's an honest question. This puzzles me.
Also I'm Reitan, not "the Christian" and while you don't owe me much respect, some degree of politeness so you don't call me glib is expected here AFAIK.
It seems like I've struck a nerve though and for that I apologise, I just hoped for an answer.
https://en.wikipedia.org/wiki/Self-preservation
> Self-preservation is a behavior that ensures the survival of an organism. It is almost universal among living organisms. Pain and fear are integral parts of this mechanism.
What is the "reality of the situation" in regards to death that they are so privy to?
[EDIT: I want to be clear - I am NOT saying that it could never be the case that some form of "being" exists outside of what appears to us as a finite biological existence, I am merely pointing out that we have no evidence of this kind of existence, aside from vague spiritual feelings and experiences which are difficult to evaluate, so the skeptical position is the most honest one for the time being.]
You seem very certain of your hypothesis. Is there anything that science has had a harder time defining, quantifying, or understanding than the nature of consciousness as it relates to reality? With that in mind it would seem more in keeping with the spirit of science to remain agnostic ("I don't know"), rather than atheistic ("I know")
>Those who raise questions about the God hypothesis and the soul hypothesis are by no means all atheists. An atheist is someone who is certain that God does not exist, someone who has compelling evidence against the existence of God. I know of no such compelling evidence. Because God can be relegated to remote times and places and to ultimate causes, we would have to know a great deal more about the universe than we do to be sure that no such God exists. To be certain of the existence of God and to be certain of the nonexistence of God seem to me to be the confident extremes in a subject so riddled with doubt and uncertainty as to inspire very little confidence indeed.
-Carl Sagan
Personally, I think there's a fair bit of reason to believe that both Zen training and hospice experience are useful to facing one's own death. Cultivating awareness of impermanence is central to Buddhist thought. Zen includes such traditions as composing one's own death poem [1] and specific meditations on death [2].
I also found spending time in a hospice to be useful. Anything unknown is hard to think about and possibly scary. Being in the presence of death made it more real for me. And I'm not alone in this; a hospice program founder has an excellent talk [3] and book [4] on what people can learn from hospice.
[1] https://en.wikipedia.org/wiki/Death_poem
[2] https://en.wikipedia.org/wiki/Mara%E1%B9%87asati
[3] http://longnow.org/seminars/02017/apr/10/what-dying-teach-li...
[4] https://www.amazon.com/Five-Invitations-Discovering-Death-Li...
This was in the Netherlands by the way, before euthanasia was legalized.
To call it vengeance would be inaccurate.
That's horrible.
https://en.wikipedia.org/wiki/Anesthesia_awareness#Backgroun...
>Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does. “You might be able to tell if their blood pressure goes up. Same with their pulse,” said Nancy Crumpacker, a retired oncologist in Oregon. “And you read their faces. If they are still bothered somehow, it will show in their facial expression.”
For example: [1], quoting:
> Instead of feeling pain, the patient experienced the characteristic sense of euphoria that accompanies a complete lack of food and water. She was cogent for weeks, chatting with her caregivers in the nursing home and writing letters to family and friends. As her organs finally failed, she slipped painlessly into a coma and died.
> “What my patients have told me over the last 25 years is that when they stop eating and drinking, there’s nothing unpleasant about it — in fact it can be quite blissful and euphoric,” said Dr. Perry G. Fine, vice president of medical affairs at the National Hospice and Palliative Care Organization in Arlington, Va. “It’s a very smooth, graceful and elegant way to go.”
[1] https://www.redorbit.com/news/health/138158/starvation_is_no...
If she wasn't conscious and didn't feel any pain I don't see how it's "worse" than any other method of death. The whole purpose is to make the patient not suffer.
Well after that she passed out, didn't wake up again, and died. Bothers me greatly to this day and I wish I had been there for the whole thing to challenge some of the decisions made that my parents didn't contest.
Get it documented, make it legal, and if you don't trust your parents, then declare somebody else able to make medical decisions for you.
When someone is going to die, there is no good way, no good time. But there are worse ways and times. As technology gives us more power to extend life of body, we are forced to considered what that means, and how to use that power wisely.
Three times I have had to decide when somebody's life ended. I think their are practical differences between deciding to withdraw care and choosing more active measures. But I think there is no moral difference. Either way, somebody vulnerable has placed their life in your hands. Either way, your only real choice is when to give up hope, and how much suffering they endure between that point and death.
I honestly don't give a fuck whether you're a better person for it. Or whether I am. It's not about us. The important question is whether you have done the best you can for the person. And "best" here, I think means something like "in accordance with their informed preferences, or as best as we can guess".
To that end, I strongly encourage everybody to get their families together and have real discussions about this. The Five Wishes framework is one good option. [1] The best thing my mom ever did for me was to have a frank conversation with me and my brother about her end-of-life preferences well before she was sick. Don't make your loved ones guess. And don't put yourself in the position of having to guess for them.
Personally, if I end up with something gruesome and terminal, I aim to die well before things get awful. Like Brittany Maynard, [2] I'd much rather go out on my terms than suffer pointlessly until my body fails, consuming absurd amounts of medical effort. Others can do differently, of course, but there's no way I'd want a doctor who frets they're going to die "a little on the inside" by following my advance care directive.
[1] https://fivewishes.org/five-wishes/advance-care-planning
[2] https://www.kqed.org/perspectives/201410280735/its-brittany-...
Are you saying this in a metaphysical sense?
Secondly, if you don't want to put your dogs to sleep, no one is forcing you to do so, just refuse it and allow them to live in pain till they die of old age. It's not the choice I would make, but then I don't have your views on euthanasia.
It's actually harder in some ways with pets because they can't talk and tell you detailed preferences for how they want to go when it's their time. All you have is the general guideline that, if their condition can't be treated and they are going to have to die, you want to minimize their suffering. I've had to do it with four cats, and we have two dogs now whose time will come eventually. It's not easy, but it's not like you have a choice; you made the choice when you took them into your life in the first place.
And don't forget that making the choice to let them into your life adds a lot more to your life than whatever the pain of having to put them to sleep takes away. Our two dogs are both rescues; we have given them many years of happy life (and many more to come) that they would otherwise not have had at all. And they have given us a lot of happiness in return. That will always be there whatever comes.
OPs statement as I read it, their grandmother fully chose the best option she thought she had at the time and it disturbed OP, so not sure of the point about pre-choosing.
I guess perhaps to say, they would prefer not to be killed just because there isn't a decent shot? I'd prefer a hospital system that didn't do that, but I guess until we get one maybe it might be needed.
And as always, rather than planing for death, what about planning for life.
Work on the thing in your life that might cause the issue in the first place. Planning for death is giving up in some regard.
I'm in my 40s and have a full estate plan including a will & trust, technical recovery how-to's, and my advanced care directives documented. If I get hit by a bus tomorrow, I don't want a) my estate drained for bullshit care that won't fix me, b) or the people caring for me and executing my post-death instructions burdened unnecessarily. If I am a vegetable and the spark that makes me, me is gone, pull the plug. If I don't have the mental ability to ask for food or water, pull the plug. If I am in so much pain I am out of my mind, bring on the opiates and large doses please.
I haven't given up and I have no plans to die any time soon. I just realized I had too much money to die without a will and I don't want to live like a vegetable. It's all my choice, not a hospital system. You don't like these decisions, you do you and document your own plan.
Death happens to us all. If you don't like how somebody else did their death, document your own preferences. If you want to live unable to lift a spoon to mouth, unable to walk, confined to a bed, not knowing what year it is, that's okay. Just hope you don't marry somebody like me without an advanced care plan! I would pull your plug under those circumstances. I'd cry, but I would do it if I didn't know what you wanted. Sounds like you wouldn't want that...
Ignoring a 100% guaranteed thing in your future because it's uncomfortable to think and talk about is irresponsible in some regard.
But that was her life and frankly, I'd want that too. IMO, when your time has come--and it does come at some point--there's no reason to suffer. A few extra days of horrible pain is not life, it's torture. Why would you want your family to see you in that position?
What was the fallout from the autopsy, etc.? This baffles me
After a day or two with no food or water she'd drift in and out of consciousness. It was amazing how she would even refuse my offer of wetting her lips with a sponge.
During a time I was alone with her, her breathing became so heavy, this rattling sound. I asked a nurse "can't you give her something" and he gave her a shot of morphine and a few min later the breathing stopped and that was that. It was quite a humbling experience.
Another thing that comes to mind is the "Brompton cocktail", a mix of morphine/heroin, cocaine, alcohol and thorazine against the nausea: https://en.wikipedia.org/wiki/Brompton_cocktail
The rattling came on day 2-3, then quieted down.
The strange(?) thing was that he lost consciousness and became unresponsive shortly after my brother arrived at the hospital. My brother was the last of the immediate, local family to arrive. My dad acknowledged his presence and in a few minutes was unconscious.
Then on the fourth day he passed shortly after his grandkids arrived from the airport.
And honestly, I wish it would stay that way. Because while I support the right of terminal patients to die at the time of their choosing and avoid pointless agony, opponents of euthanasia do have a good point– which is not appreciated nearly often enough– that state-sanctioned euthanasia opens the door for family members to start pressuring people to die when they don't really want to. This is a thing that happens more than anyone wants to admit in areas where it is legal.
Deliberate ambiguity, where euthanasia is allowed but we all pretend it's not, is the best way to square this circle. Doctors have implicitly understood this for a while, hence this practice. Unfortunately, most people hate ambiguity in their laws, which I understand and think is a good priniple in general, but I wish they'd look more carefully and see that the benefits outweigh the costs here.
Everything I've ever read - or heard - from doctors, is the exact opposite - that family members more often than not want herculean and unintentionally inhumane efforts made to keep a suffering family member alive for just a little bit longer.
As someone else brought up, there can be disagreements between family and an individual about when the right time for them to die is in both directions. Even in America this can be observed with things like life support for the very elderly, an intervention that is sometimes necessary for continued life but not considered euthanasia to forego. You won't have to dig very deep to find a doctor that has seen families argue about this.
So, if you say "only I can make the decision," then mental illness becomes a lot more deadly than it has to be. If you say, "other people can weigh in," then what do you do when they want you to die more than you do (and start pressuring you, and you're old, and already depressed...)? This leaves us at our current state, which is "nobody gets to make the decision."
If you're equating society with government, you're not correct in every case. Assisted suicide is legal in some jurisdictions. California is mentioned in the article, but another example: https://en.wikipedia.org/wiki/Euthanasia_in_Canada
Again, this can already be seen happening in life-support cases. I won't say "ask any doctor," because I haven't asked every doctor, but it's not too hard to find first-hand accounts.
No one is proposing to legalize impulsive suicide, and it's ridiculous to equate euthanasia with it.
They find even the proper application of euthanasia terribly emotionally draining though. It's being confronted by the feelings of the human family that is the worst for them.
Most notably after a dog has mauled someone.
Having seen some of my grandparents slowly fade with dementia, I'm sad they didn't have the choice to end it on their terms. Whether they would have chosen to do so I don't know.
But the individual freedom to end your own pointless suffering seems very reasonable to me.
I am planning to set one up soon though I will hopefully have a few more decades ahead of me. It will specifically state that in the event I can no longer manage my affairs I wish to be transported to the nearest locale in which I can have my life ended.
Ha ha, "manage my affairs"... maybe give yourself a slightly longer rope :)
My grandmother sure can't do her own taxes, but she has no illness - she's just old, and world has changed around her.
Assuming you have well behaved kids, you'll likely stop managing your affairs long before you loose your health.
And should these frameworks have flaws we can improve them.
I won't outline a proposal here, but it's not rocket science to require a paper signed while of sound mind, and then giving a guardian permission to pull the plug later. It's not rocket science to limit it to people with fatal conditions, etc.
Someone always decides what's right, either yourself or your family or the state (usually via law).
You opt in favour of state and conveniently ignore the will of the people who would choose family or "they themselves" because law is not a person and therefore it can decide.
That's not at all convincing.
Except that is not our current state. Our current state is that a bizarre legal process makes the decision, and that process is different in every state.
Any time you have uncertainty, you necessarily have both type I and type II errors. You can tweak your decision criteria so that you get more of one or more of the other, but you can never eliminate errors entirely. The fundamental problem we have is that we can't agree which is worse: having someone die before their time, or having someone live past it.
One thing that would help is to recognize that our choice of terminology is hurting us: we talk about "saving lives" but in fact there is no such thing as "saving" a life, only extending one. Once you look at it that way you realize almost immediately that if you're going to allocated resources to extending a life, it probably makes more sense to, say, allocate those resources to a 20-year-old rather than a 95-year-old.
Most of the objection to euthanasia is focused on the case where you are administering deadly medications to a person that can survive on their own. Ending life support is another debate, although one that shares many properties and players with euthanasia.
On the other hand, I really don't see the salient difference between euthanizing someone and sedating them until they die of starvation and dehydration. Once you start to intervene with the intent of producing a painless death, why not just get it over with?
If so, why so? Why is that form of induced death better or worse than administering a drug? If not, why not? It's clearly a form of hospital administered life support just like a breathing machine.
I don't have the answer, but it's not a cut and dry question. Like most things around life and conscienceness it's complicated.
You (rightly) worry about a situation where someone is pressured into dying, or chooses to die because their brain is broken. But what about situations where someone is suffering horribly with no relief to come, and they want to end it, and their family agrees, and their doctors, but everyone is prevented from carrying out their wishes because of a blanket ban?
And "workaround" seems a strangely lightweight term to use in this context. It's not an engineering problem you're faced with here. It's an ethical issue.
I am terrified by the possibility of not being capable to end my life when I want to, either because I am too disabled, or senile to the point of forgetting to do that.
Huh? It's whatever a patient says it is. Otherwise, it's torture.
But otherwise, there are other ways to communicate.
Here’s a link to a recent Reddit comment where I discussed this idea, along with suggestions of drugs to try:
https://www.reddit.com/r/depressionregimens/comments/8wcv8f/...
I'm sorry to read that you want to die, but I hope very much that you continue to fail. You are valuable, you make the world better by being in it and it will be worse when you do die. Yes, you have a mental condition, but that is no reason to hate yourself: you deserve love, not hate. Life is tough for everyone, some more than others, but it's also full of joy & beauty, and you're part of that joy & beauty.
Suicide rates are much lower in areas where people have less access to things that can end their life (e.g. https://www.hsph.harvard.edu/news/magazine/guns-and-suicide/), statistically speaking many people do make it through. By offering euthanasia to people who would otherwise survive, those people will lose their shot at life beyond their condition.
Public health policy has to be driven from the net benefits to all and not at the individual case level.
That doesn't seem to me to be a reasonable standard for medically-indicated euthanasia. Influenza meets that test more strongly.
I do wish you the best in your future path, however long that may be.
That's beside the point in that the current medical practice and legal environment doesn't support that position broadly, so with respect to medical indication, the fact that some people die from a given condition does not seem to be a workable threshold for supporting euthanasia as a treatment.