What are y'all's thoughts on end of life care. If your family member (or yourself) has a poor prognosis and can't make a decision for themselves, what determines how aggressive you're going to be with treatment? If the doctors say that the chances of meaningful recovery are slim, or that they look like they are in a lot of discomfort, and they recommend comfort care or hospice, do you trust their assessment?


Personally I think age is a big factor. Obviously the younger someone is the more aggressive I'd be with their treatment, as they have a higher likelihood of recovery and having meaningful years left. Also the disease they are afflicted with, an elderly person can appear very sick but recover quickly from a pneumonia with some antibiotics. Conversly they can also go downhill very quickly. What if you get a poor prognosis, and you put someone on comfort care, and they end up living for 3-4 days, not getting any food/water. Would you second guess your decision, even if the prognosis is poor?

Of course there's no one size fits all. I'm kind of just thinking. I also recommend everyone watch Extremis on Netflix. It's only about 20 minutes. But I think it's a good quick glimpse into what these decisions entail for the family as well as the patient, and the consequences of those decisions on both.

I have a grandmother who can barely walk and falls at times trying to get into the bed.

I hate to imagine what life will be like at 80+.

The only thing that gives me hope is Psalms 136. (His love endures forever.)

Does giving food and water mean putting a feeding tube down their nose and throat and using a pump to feed them? Or a feeding tube through their abdomen directly into their stomach? Or just having food and water available, and if they're able to eat/drink (or ask for assistance), then giving it?

bigtruckguy3500 said:

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Does giving food and water mean putting a feeding tube down their nose and throat and using a pump to feed them? Or just having food and water available, and if they're able to eat/drink (or ask for assistance), then giving it?

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How old are they? What is their condition? Is it a mental problem like dementia?

I'm not referring to one specific person, although a recent instance I witnessed did spur this thread. I think we don't like to think about it ahead of time because it's morbid, but when the time comes it makes decisions much harder. Especially if we never had this discussion about our own wishes with our loved ones. Putting the burden on them, to figure out what we would've wanted, is probably a little unfair.

But still, there are people out there who will put in a permanent feeding tube through someone's stomach and sometimes even a permanent breathing tube through their neck to keep them alive until their hearts give out. To them it could be because they think it's unnatural to stop feeding someone before their heart stops.

Just trying to provoke some thoughts and discussion.

bigtruckguy3500 said:

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What are y'all's thoughts on end of life care. If your family member (or yourself) has a poor prognosis and can't make a decision for themselves, what determines how aggressive you're going to be with treatment? If the doctors say that the chances of meaningful recovery are slim, or that they look like they are in a lot of discomfort, and they recommend comfort care or hospice, do you trust their assessment?


Personally I think age is a big factor. Obviously the younger someone is the more aggressive I'd be with their treatment, as they have a higher likelihood of recovery and having meaningful years left. Also the disease they are afflicted with, an elderly person can appear very sick but recover quickly from a pneumonia with some antibiotics. Conversly they can also go downhill very quickly. What if you get a poor prognosis, and you put someone on comfort care, and they end up living for 3-4 days, not getting any food/water. Would you second guess your decision, even if the prognosis is poor?

Of course there's no one size fits all. I'm kind of just thinking. I also recommend everyone watch Extremis on Netflix. It's only about 20 minutes. But I think it's a good quick glimpse into what these decisions entail for the family as well as the patient, and the consequences of those decisions on both.

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These are all great questions. I work in Senior Care and this type of thing is something I deal with on a regular basis.

The short answer is, it depends. Certainly, you are correct that age def dictates how aggressive most are on treatment. It's a tough situation and very personal because most think they will handle things one way, but sometimes the situation comes and you act a diff way.

bigtruckguy3500 said:

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I'm not referring to one specific person, although a recent instance I witnessed did spur this thread. I think we don't like to think about it ahead of time because it's morbid, but when the time comes it makes decisions much harder. Especially if we never had this discussion about our own wishes with our loved ones. Putting the burden on them, to figure out what we would've wanted, is probably a little unfair.

But still, there are people out there who will put in a permanent feeding tube through someone's stomach and sometimes even a permanent breathing tube through their neck to keep them alive until their hearts give out. To them it could be because they think it's unnatural to stop feeding someone before their heart stops.

Just trying to provoke some thoughts and discussion.

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I don't think there's a simple answer. It depends on a host of factors and each person is different. I think most people would not want to be kept alive while drooling with no brain function at 90 years old just to keep their heart beating. But a 30 year old in a coma is a different story.

I think you have to uphold the person's wishes as best as humanly possible and everyone should make it clear and detailed what they want.

This argument tore my mother's family apart when her Dad passed. It was awful to watch.

My wife's family had to make this decision with her grandmother years ago. She was in her 80's and basically got to the point where it was obvious there was no hope for recovery. However with water and a feeding tube she could go on for who knows how long. But do you really want to just keep her alive hooked up to machines unconscious? They made the decision to turn everything off and my MIL still feels awful about it now.

Frok said:

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My wife's family had to make this decision with her grandmother years ago. She was in her 80's and basically got to the point where it was obvious there was no hope for recovery. However with water and a feeding tube she could go on for who knows how long. But do you really want to just keep her alive hooked up to machines unconscious? They made the decision to turn everything off and my MIL still feels awful about it now.

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That's the thing. I think there's this idea that by "pulling the plug" you're killing them. But I feel like you're showing mercy on them. I mean even if they're 30 years old in a coma, if there's virtually no chance of any meaningful recovery, you're subjecting them to potentially decades of laying in a bed, being an empty shell, potentially getting bed sores, getting complications from inactivity, urinary tract infections, etc. And then the toll it takes on the family that has to take care of them, physically, emotionally, financially, adds up. We also tend to believe in the 1 in a 1000+ miracle.

Easier to say than actually do. It still feels like you are being asked to pull a trigger.

I don't want to seem like I"m attacking your position, but I just want to understand it better.

Let's say someone was paralyzed but otherwise neurologically his brain was in tact, you'd feed them. What if a 30 year old had a severe brain injury but the rest of their body was intact? And when I say severe brain injury, I mean they don't open their eyes, make any voluntary movements, etc. All you'd need to do to keep them alive was feed them. Would you do it? Would you consider withdrawing all care (including feeding) letting them die naturally or unnaturally? Right now morphine is commonly used to help easy any pain, hunger, or "air hunger" associated with dying while in "comfort care."

I don't think I quite described what I was thinking in my mind, but fair point.

bigtruckguy3500 said:

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Frok said:

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My wife's family had to make this decision with her grandmother years ago. She was in her 80's and basically got to the point where it was obvious there was no hope for recovery. However with water and a feeding tube she could go on for who knows how long. But do you really want to just keep her alive hooked up to machines unconscious? They made the decision to turn everything off and my MIL still feels awful about it now.

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That's the thing. I think there's this idea that by "pulling the plug" you're killing them. But I feel like you're showing mercy on them. I mean even if they're 30 years old in a coma, if there's virtually no chance of any meaningful recovery, you're subjecting them to potentially decades of laying in a bed, being an empty shell, potentially getting bed sores, getting complications from inactivity, urinary tract infections, etc. And then the toll it takes on the family that has to take care of them, physically, emotionally, financially, adds up. We also tend to believe in the 1 in a 1000+ miracle.

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Don't necessarily disagree, but not doing a feeding tube is basically starving someone to death. That's a really tough thing to do and see happen.

This is clearly why there should be the ability to euthanize (I know some will cringe at that word) based on certain factors. We think we are showing mercy to our pets, but it makes us feel uncomfortable when that discussion turns to people.

dds08 said:

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I have a grandmother who can barely walk and falls at times trying to get into the bed.

I hate to imagine what life will be like at 80+.

The only thing that gives me hope is Psalms 136. (His love endures forever.)

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There was an interesting article I saw the other day that pointed out that our lifespans have increased dramatically over the last half century, but that our number of active years has remained constant. That is, many of us may live to be 100, but quality of life won't be very good for the last 20+ years.

Dad-O-Lot said:

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Macarthur said:

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This is clearly why there should be the ability to euthanize (I know some will cringe at that word) based on certain factors.

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I could not disagree more.

Shortly after becoming legal, it will become recommended; before long it will become mandatory in certain situations.

I trust no organization to get this right.

As soon as some parameters are defined, there will be pressure to update and expand those parameters. Emotionally charged language and hard cases will be used to make emotionally based decisions which will kill people who did not want to be killed and even others who could have lived long productive lives.

Some people will agree to be euthanized because they don't want to "be a burden" on others. Some will feel pressured to do so.

This is a Pandora's box that we do not want opened.

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Yeah, I don't really know about that. Euthanasia has been practiced in the Netherlands since the 90's (maybe earlier). It was officially legalized in 2000 or thereabout. I know we're talking only about 18 years since legalization, and 25+ since we know it was practiced, but as far as I know nothing you said will happen has happened over there.

And euthanasia isn't "hey I want to commit suicide, I'll go to the doctor and he'll help me." It's "I'm dying in a manner that will leave me very crippled with a high level of morbidity before I die and I'd rather go out now before I end up with bed sores because I can't move as my muscles have wasted away." Every place that has made it legal has put in very specific stipulations that limit abuse, in many cases I think psych exams are required before hand to ensure a lot of what you said isn't happening. And not all requests for euthanasia are accepted.

Macarthur said:

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bigtruckguy3500 said:

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Frok said:

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My wife's family had to make this decision with her grandmother years ago. She was in her 80's and basically got to the point where it was obvious there was no hope for recovery. However with water and a feeding tube she could go on for who knows how long. But do you really want to just keep her alive hooked up to machines unconscious? They made the decision to turn everything off and my MIL still feels awful about it now.

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That's the thing. I think there's this idea that by "pulling the plug" you're killing them. But I feel like you're showing mercy on them. I mean even if they're 30 years old in a coma, if there's virtually no chance of any meaningful recovery, you're subjecting them to potentially decades of laying in a bed, being an empty shell, potentially getting bed sores, getting complications from inactivity, urinary tract infections, etc. And then the toll it takes on the family that has to take care of them, physically, emotionally, financially, adds up. We also tend to believe in the 1 in a 1000+ miracle.

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Don't necessarily disagree, but not doing a feeding tube is basically starving someone to death. That's a really tough thing to do and see happen.

This is clearly why there should be the ability to euthanize (I know some will cringe at that word) based on certain factors. We think we are showing mercy to our pets, but it makes us feel uncomfortable when that discussion turns to people.

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Right, yeah, what I really mean't to say is sometimes if someone is teetering on the edge of death in the hospital, you can help ease them over by not giving them IV fluids while you withdraw other supportive treatments (like a ventilator or certain meds). But if you give them food and fluids, along with everything else, they may recover to the point where (in my scenario) they're essentially brain dead, but the rest of their body is functioning. At that point, I agree, it would not be appropriate to then starve them.

And yeah, it is interesting how we sometimes value animals over humans. If you get caught abusing a dog, you're going to plastered all over social media and publicly shamed, you may get charged with animal cruelty, etc. But even if you're caught abusing a child, people tend to ignore minor cases and sometimes let it continue for a long time.

bigtruckguy3500 said:

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Dad-O-Lot said:

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Macarthur said:

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This is clearly why there should be the ability to euthanize (I know some will cringe at that word) based on certain factors.

---

I could not disagree more.

Shortly after becoming legal, it will become recommended; before long it will become mandatory in certain situations.

I trust no organization to get this right.

As soon as some parameters are defined, there will be pressure to update and expand those parameters. Emotionally charged language and hard cases will be used to make emotionally based decisions which will kill people who did not want to be killed and even others who could have lived long productive lives.

Some people will agree to be euthanized because they don't want to "be a burden" on others. Some will feel pressured to do so.

This is a Pandora's box that we do not want opened.

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Yeah, I don't really know about that. Euthanasia has been practiced in the Netherlands since the 90's (maybe earlier). It was officially legalized in 2000 or thereabout. I know we're talking only about 18 years since legalization, and 25+ since we know it was practiced, but as far as I know nothing you said will happen has happened over there.

And euthanasia isn't "hey I want to commit suicide, I'll go to the doctor and he'll help me." It's "I'm dying in a manner that will leave me very crippled with a high level of morbidity before I die and I'd rather go out now before I end up with bed sores because I can't move as my muscles have wasted away." Every place that has made it legal has put in very specific stipulations that limit abuse, in many cases I think psych exams are required before hand to ensure a lot of what you said isn't happening. And not all requests for euthanasia are accepted.

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They have allowed a teenage girl to be euthanized because she was depressed.

I don't think they'll advertise and promote that people are feeling pressured to be euthanized. Human nature, however, tells me that that is at least sometimes the case.

teenager in "hopeless medical condition" allowed to commit euthanasia

subtle change in language, from "terminally ill" to "in a hopeless medical condition"

Yes, the standards have expanded.

No, it wasn't "because she was depressed." The law is very specific

"The Belgian law has very strict rules for the euthanasia to be approved. It requires the minor to be in the final stages of a terminal illness, to understand the difference between life and death rationally and to have asked to end his or her life on repeated occasions. It also requires parental consent and finally the approval of two doctors, including a psychiatrist."

And other articles describe her as having a terminal illness. By hopeless, I think they mean't no hope for recovery, not hopeless as in she just lacks hope, i.e. depressed over her future.

https://www.theguardian.com/society/2016/sep/17/terminally-ill-child-first-helped-to-die-belgium
https://www.cbsnews.com/news/child-dies-by-euthanasia-in-belgium-where-assistance-in-dying-is-legal/

Dad-O-Lot said:

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You realize that this is the same philosophy which supports abortion for "the health of the mother" and includes mental health in that definition. The point is that edge cases will continually expand the allowed criteria. All it takes is someone to expand the definition "terminal" and to support the suicidal person's assertion that they are "in constant pain".

As we have seen so often, the letter of the law is not always the final word. Lawyers and others will expand definitions to fit their own circumstances. All it takes is one judge to say OK, and a new precedent has been set.

I remain steadfast in my assertion that this is a Pandora's box we do not want to open.

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Agree.

People have been euthanized in Belgium for depression. Disturbing.

bigtruckguy3500 said:

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I don't want to seem like I"m attacking your position, but I just want to understand it better.

Let's say someone was paralyzed but otherwise neurologically his brain was in tact, you'd feed them. What if a 30 year old had a severe brain injury but the rest of their body was intact? And when I say severe brain injury, I mean they don't open their eyes, make any voluntary movements, etc. All you'd need to do to keep them alive was feed them. Would you do it? Would you consider withdrawing all care (including feeding) letting them die naturally or unnaturally? Right now morphine is commonly used to help easy any pain, hunger, or "air hunger" associated with dying while in "comfort care."

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Had to essentially do this with my own mother.

I fully support proper euthanasia. It's good enough for my endlessly loved family pet and it's good enough for you.

Dad-O-Lot said:

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bigtruckguy3500 said:

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Does giving food and water mean putting a feeding tube down their nose and throat and using a pump to feed them? Or a feeding tube through their abdomen directly into their stomach? Or just having food and water available, and if they're able to eat/drink (or ask for assistance), then giving it?

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More than just "available". I can't imagine the torture it would be to starve to death while looking at food and water that you just cannot consume.

If in a coma, or some other semi-conscious state, I would want fluids and nutrition provided in the most comfortable method possible.

If my body breaks and I cannot breathe on my own, or my blood won't circulate, I wouldn't want to live long term on a respirator or heart machine.

If I just can't eat or drink, don't starve me to death.

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You don't understand how the natural dying process works. In the end, forcing unnatural food/fluids into a dying body causes more suffering. The body is supposed to die dehydrated.

Yeah, deciding to withdraw care, move to comfort care, or even just move to DNR/DNI is hard to do. That's why I encourage everyone to have a discussion with their loved ones ahead of time and/or having an official advanced directive. Often times patients don't want anything done, and want to pass peacefully, but then family comes rushing in and saying "no, they told me they want everything done," and the doctor has to listen to the family. Patients spend weeks-months in a hospital bed being kept alive by a ventilator, having surgeries done to feed them and allow them to breathe, sometimes getting broken ribs and brain damage during CPR, etc. Often times for the one in a million miracle of a meaningful recovery we put people through unnecessary pain and suffering.

Again, everyone has their own views about what they would want done to them, or what they think they'd decide for their loved ones. Just make sure you're making an informed decision either way, and make sure those all around you know your wishes. It's unfair to put the entire burden on them, and it's doing you a disservice to get care (or not get care) that you don't want (or want).

I've seen way too much suffering because of selfish family members. My family knows exactly what I expect & want. I make them openly talk about death & their wishes.

I've had a family say they never talked about end of life care because they never thought they would die, God would never let that happen. It is something that isn't talked about but it should be & should be respected.

"In the end, forcing unnatural food/fluids into a dying body causes more suffering. The body is supposed to die dehydrated."

Great point!!!

Charon, by Lord Dunsany:

Bumping this again due to recent relevance regarding Barbara Bush's choice to move to comfort care. I hope her decision brings more light on the choice and removes fears some people have about it.


https://khn.org/news/barbara-bushs-end-of-life-decision-stirs-debate-over-comfort-care/
https://www.nbcnews.com/better/health/barbara-bush-choosing-comfort-care-what-does-entail-more-you-ncna866596