Choices

[saveinla]

Jul 2, 2020 17:36:47 GMT -5 Tennesseer said:

Jun 30, 2020 19:33:06 GMT -5 Tennesseer said:

Not surprising, donethat.

My sister's best friend is now receiving hospice care.  My sister and her friend are 67 years old.  The friend refuses to discuss with her husband or with anyone else what she wants to happen with her remains once she passes.  Will not discuss it at all.

The thought is what ever her husband decides to do once his wife passes won't really matter to his wife.  

She peacefully passed away this afternoon.

Sorry for your loss @tenesseer.

I agree with your sister's friend - I am gone - do what you want. Why complicate things? If you are young and have kids, then I think that is different. 

[TheOtherMe]

Jul 2, 2020 17:36:47 GMT -5 Tennesseer said:

Jun 30, 2020 19:33:06 GMT -5 Tennesseer said:

Not surprising, donethat.

My sister's best friend is now receiving hospice care.  My sister and her friend are 67 years old.  The friend refuses to discuss with her husband or with anyone else what she wants to happen with her remains once she passes.  Will not discuss it at all.

The thought is what ever her husband decides to do once his wife passes won't really matter to his wife.  

She peacefully passed away this afternoon.

I'm so sorry for your loss.

[Tennesseer]

Jul 2, 2020 18:06:38 GMT -5 TheOtherMe said:

Jul 2, 2020 17:36:47 GMT -5 Tennesseer said:

She peacefully passed away this afternoon.

I'm so sorry for your loss.

Thanks.

[Deleted]

Jul 1, 2020 7:45:02 GMT -5 pulmonarymd said:

If I may weigh in. I apologize in advance if this becomes too long, and do not wish to offend anyone. This is my medical opinion based on over 25 years of doing critical care.

Living wills came into existence with the Karen Ann Quinlan case. She was a young women who fell into a vegetative state, and her family fought to remove medical intervention.

These pieces of Paper have significant limits. They are usually generic, and have vague and in most situations, less than helpful language. They can be helpful as a starting point of discussions, and sometimes help families make decisions. But it is a rare situation for us to remove support in an unconscious patient over a family’s objection.

A durable power of attorney for medical affairs is far more useful. The problem is picking that person carefully. Patients usually go to a default choice, without thinking if that person is capable of carrying out their wishes. In addition, many do not discuss their wishes, and then the decision maker is in the dark. Legally, we can follow this person’s lead, even over other Family members objection, although we try to get consensus.

Now, most decisions are not black and white, but require discussions about goals of care. Do you want aggressive care at the end of life, even though you have a worsening chronic disease, and are unlikely to live independently again, and will continue to require repeated hospital admissions. If you get repeated pneumonia due to aspiration, and need to eat a pureed diet with thickened liquids, is that acceptable. We cannot and will not make that decision for you. You need to decide what quality of life you find acceptable.

These decisions require ongoing discussions. For a long time, insurance did not pay for these time consuming visits, and then the death panel accusation came to the fore. Thankfully, that situation has improved, and covid has accelerated the acceptance of these discussions in many cases.

Patients are almost always overly optimistic with their assessment of their outcome, and families almost always insist on care beyond what we would recommend. Patients also do not die as physicians do. We have less intervention at the end of life, and a greater use of hospice care. Something everyone should mull over.

Just my 2 cents. Take it for what it is worth. I will not be offended if you disagree

When my dear Grandmother suffered what ended up being a fatal heart attack at 85 yo, she was airlifted from one hospital to another that was the only hospital in the area that uses a method (My apologies, Idk the proper term for the procedure) where they basically freeze the patient and gradually warm them back up, for whatever reason. My Mom and Aunt asked if my Grandmother survived this treatment, what her quality of life would likely be like. After some hemming and hawing, and my Mom and Aunt insisting on an answer, they  were told there was a good chance she would be a “vegetable”, because they wouldn’t actually try to “fix” her heart, because of her age.

My Mom and Aunt told them to stop, and undo everything, because that wasn’t what my Grandmother would have wanted.

I had a good friend who happened to work at the hospital my Grandmother was in, on the same floor where she was. I called my friend and asked her to please talk to me as my friend, not as a nurse. She confirmed my thoughts that even if my Grandmother made it through that particular episode, it was just going to happen again. And again, until she didn’t survive it. 

She also told me that the doctors had a problem with my Mom and Aunt asking them to stop the treatment. And she said that she’d told them “This is what we say we want, to have patients’ families involved in their care, right? And her children are both saying that this patient would not have wanted this, so what’s the problem?”

 This all happened on a Monday. They stopped the procedure that night. I saw my Grandmother while she was “frozen” and it broke my heart. The next morning, she woke up, to the Doctor’s amazement. I rushed to the hospital and was able to see my Grandmother awake. Still her feisty self, she made a face and licked her tongue out at me when she saw me. But she also kept telling me “I don’t feel good” and asking Jesus to have mercy and help her. When she closed her eyes and went to sleep that evening, it was the last time she was conscious before she died that Friday night. One of us was with her the entire time, which was apparently unusual because the doctors and nurses kept commenting on it.

It may be selfish of me, but I’ll be forever grateful that the “frozen” memory is not the last memory I have of her. The “frozen” sight was just that terrible.

I’ve forgotten what point I was trying to make by telling my Grandmother’s story. I guess maybe I was trying to say that it matters when our loved ones make their wishes known, and some families, like mine, will try to honor those wishes. As much as I wasn’t ready to lose my Grandmother, I believe my Mom and Aunt did right by my her. She’d never told me specifically, but even I knew she wouldn’t have wanted to be hooked up to all those machines and suffer through all that just to be alive, but unable to “live”.

And part of how I knew that was that as a young adult, I’d watched my Grandmother make difficult decisions with her own mother, my Great Grandmother. She’d had to decide when to let her own Mother go, instead of continuing to constantly have her hospitalized to keep her alive, when she was bedridden and had advanced dementia.... not even really talking.... basically a vegetable. If she didn’t want that for her Mother, who she loved dearly, it’s not hard to believe she wouldn’t want that for herself either.

I know it can be hard, but I think we all should make our wishes known, and as painful as it can be, I think those wishes should be respected by our families and medical teams, and honored. It’s like a final act of respect, love and kindness, and the gift of dignity I guess, even though it hurts so much.

The night my Grandmother died, we ended up trying to comfort her nurse. She hadn’t been a nurse long, and she was upset and crying because my Grandmother had died. Instead of being appalled at her being unprofessional, we were comforted by the fact that the nurse who’d been helping to care for her saw her as a person and not just a patient. That meant something to me, and I’m sure, my Mom and Aunt too. We all hugged and cried with her.

My apologies for rambling and forgetting what my original point was.  

[pulmonarymd]

Jul 2, 2020 18:41:55 GMT -5 @pinkcshmere said:

Jul 1, 2020 7:45:02 GMT -5 pulmonarymd said:

If I may weigh in. I apologize in advance if this becomes too long, and do not wish to offend anyone. This is my medical opinion based on over 25 years of doing critical care.

Living wills came into existence with the Karen Ann Quinlan case. She was a young women who fell into a vegetative state, and her family fought to remove medical intervention.

These pieces of Paper have significant limits. They are usually generic, and have vague and in most situations, less than helpful language. They can be helpful as a starting point of discussions, and sometimes help families make decisions. But it is a rare situation for us to remove support in an unconscious patient over a family’s objection.

A durable power of attorney for medical affairs is far more useful. The problem is picking that person carefully. Patients usually go to a default choice, without thinking if that person is capable of carrying out their wishes. In addition, many do not discuss their wishes, and then the decision maker is in the dark. Legally, we can follow this person’s lead, even over other Family members objection, although we try to get consensus.

Now, most decisions are not black and white, but require discussions about goals of care. Do you want aggressive care at the end of life, even though you have a worsening chronic disease, and are unlikely to live independently again, and will continue to require repeated hospital admissions. If you get repeated pneumonia due to aspiration, and need to eat a pureed diet with thickened liquids, is that acceptable. We cannot and will not make that decision for you. You need to decide what quality of life you find acceptable.

These decisions require ongoing discussions. For a long time, insurance did not pay for these time consuming visits, and then the death panel accusation came to the fore. Thankfully, that situation has improved, and covid has accelerated the acceptance of these discussions in many cases.

Patients are almost always overly optimistic with their assessment of their outcome, and families almost always insist on care beyond what we would recommend. Patients also do not die as physicians do. We have less intervention at the end of life, and a greater use of hospice care. Something everyone should mull over.

Just my 2 cents. Take it for what it is worth. I will not be offended if you disagree

When my dear Grandmother suffered what ended up being a fatal heart attack at 85 yo, she was airlifted from one hospital to another that was the only hospital in the area that uses a method (My apologies, Idk the proper term for the procedure) where they basically freeze the patient and gradually warm them back up, for whatever reason. My Mom and Aunt asked if my Grandmother survived this treatment, what her quality of life would likely be like. After some hemming and hawing, and my Mom and Aunt insisting on an answer, they  were told there was a good chance she would be a “vegetable”, because they wouldn’t actually try to “fix” her heart, because of her age.

My Mom and Aunt told them to stop, and undo everything, because that wasn’t what my Grandmother would have wanted.

I had a good friend who happened to work at the hospital my Grandmother was in, on the same floor where she was. I called my friend and asked her to please talk to me as my friend, not as a nurse. She confirmed my thoughts that even if my Grandmother made it through that particular episode, it was just going to happen again. And again, until she didn’t survive it. 

She also told me that the doctors had a problem with my Mom and Aunt asking them to stop the treatment. And she said that she’d told them “This is what we say we want, to have patients’ families involved in their care, right? And her children are both saying that this patient would not have wanted this, so what’s the problem?”

 This all happened on a Monday. They stopped the procedure that night. I saw my Grandmother while she was “frozen” and it broke my heart. The next morning, she woke up, to the Doctor’s amazement. I rushed to the hospital and was able to see my Grandmother awake. Still her feisty self, she made a face and licked her tongue out at me when she saw me. But she also kept telling me “I don’t feel good” and asking Jesus to have mercy and help her. When she closed her eyes and went to sleep that evening, it was the last time she was conscious before she died that Friday night. One of us was with her the entire time, which was apparently unusual because the doctors and nurses kept commenting on it.

It may be selfish of me, but I’ll be forever grateful that the “frozen” memory is not the last memory I have of her. The “frozen” sight was just that terrible.

I’ve forgotten what point I was trying to make by telling my Grandmother’s story. I guess maybe I was trying to say that it matters when our loved ones make their wishes known, and some families, like mine, will try to honor those wishes. As much as I wasn’t ready to lose my Grandmother, I believe my Mom and Aunt did right by my her. She’d never told me specifically, but even I knew she wouldn’t have wanted to be hooked up to all those machines and suffer through all that just to be alive, but unable to “live”.

And part of how I knew that was that as a young adult, I’d watched my Grandmother make difficult decisions with her own mother, my Great Grandmother. She’d had to decide when to let her own Mother go, instead of continuing to constantly have her hospitalized to keep her alive, when she was bedridden and had advanced dementia.... not even really talking.... basically a vegetable. If she didn’t want that for her Mother, who she loved dearly, it’s not hard to believe she wouldn’t want that for herself either.

I know it can be hard, but I think we all should make our wishes known, and as painful as it can be, I think those wishes should be respected by our families and medical teams, and honored. It’s like a final act of respect, love and kindness, and the gift of dignity I guess, even though it hurts so much.

The night my Grandmother died, we ended up trying to comfort her nurse. She hadn’t been a nurse long, and she was upset and crying because my Grandmother had died. Instead of being appalled at her being unprofessional, we were comforted by the fact that the nurse who’d been helping to care for her saw her as a person and not just a patient. That meant something to me, and I’m sure, my Mom and Aunt too. We all hugged and cried with her.

My apologies for rambling and forgetting what my original point was.  

I think my part of the country is better with letting people go. Far too much futile care is given. People are always concerned with giving up too soon, when really we go on too long. It is easier to just do, rather than ask if we should

[Deleted]

Jul 2, 2020 18:41:55 GMT -5 @pinkcshmere said:

Jul 1, 2020 7:45:02 GMT -5 pulmonarymd said:

If I may weigh in. I apologize in advance if this becomes too long, and do not wish to offend anyone. This is my medical opinion based on over 25 years of doing critical care.

Living wills came into existence with the Karen Ann Quinlan case. She was a young women who fell into a vegetative state, and her family fought to remove medical intervention.

These pieces of Paper have significant limits. They are usually generic, and have vague and in most situations, less than helpful language. They can be helpful as a starting point of discussions, and sometimes help families make decisions. But it is a rare situation for us to remove support in an unconscious patient over a family’s objection.

A durable power of attorney for medical affairs is far more useful. The problem is picking that person carefully. Patients usually go to a default choice, without thinking if that person is capable of carrying out their wishes. In addition, many do not discuss their wishes, and then the decision maker is in the dark. Legally, we can follow this person’s lead, even over other Family members objection, although we try to get consensus.

Now, most decisions are not black and white, but require discussions about goals of care. Do you want aggressive care at the end of life, even though you have a worsening chronic disease, and are unlikely to live independently again, and will continue to require repeated hospital admissions. If you get repeated pneumonia due to aspiration, and need to eat a pureed diet with thickened liquids, is that acceptable. We cannot and will not make that decision for you. You need to decide what quality of life you find acceptable.

These decisions require ongoing discussions. For a long time, insurance did not pay for these time consuming visits, and then the death panel accusation came to the fore. Thankfully, that situation has improved, and covid has accelerated the acceptance of these discussions in many cases.

Patients are almost always overly optimistic with their assessment of their outcome, and families almost always insist on care beyond what we would recommend. Patients also do not die as physicians do. We have less intervention at the end of life, and a greater use of hospice care. Something everyone should mull over.

Just my 2 cents. Take it for what it is worth. I will not be offended if you disagree

When my dear Grandmother suffered what ended up being a fatal heart attack at 85 yo, she was airlifted from one hospital to another that was the only hospital in the area that uses a method (My apologies, Idk the proper term for the procedure) where they basically freeze the patient and gradually warm them back up, for whatever reason. My Mom and Aunt asked if my Grandmother survived this treatment, what her quality of life would likely be like. After some hemming and hawing, and my Mom and Aunt insisting on an answer, they  were told there was a good chance she would be a “vegetable”, because they wouldn’t actually try to “fix” her heart, because of her age.

My Mom and Aunt told them to stop, and undo everything, because that wasn’t what my Grandmother would have wanted.

I had a good friend who happened to work at the hospital my Grandmother was in, on the same floor where she was. I called my friend and asked her to please talk to me as my friend, not as a nurse. She confirmed my thoughts that even if my Grandmother made it through that particular episode, it was just going to happen again. And again, until she didn’t survive it. 

She also told me that the doctors had a problem with my Mom and Aunt asking them to stop the treatment. And she said that she’d told them “This is what we say we want, to have patients’ families involved in their care, right? And her children are both saying that this patient would not have wanted this, so what’s the problem?”

 This all happened on a Monday. They stopped the procedure that night. I saw my Grandmother while she was “frozen” and it broke my heart. The next morning, she woke up, to the Doctor’s amazement. I rushed to the hospital and was able to see my Grandmother awake. Still her feisty self, she made a face and licked her tongue out at me when she saw me. But she also kept telling me “I don’t feel good” and asking Jesus to have mercy and help her. When she closed her eyes and went to sleep that evening, it was the last time she was conscious before she died that Friday night. One of us was with her the entire time, which was apparently unusual because the doctors and nurses kept commenting on it.

It may be selfish of me, but I’ll be forever grateful that the “frozen” memory is not the last memory I have of her. The “frozen” sight was just that terrible.

I’ve forgotten what point I was trying to make by telling my Grandmother’s story. I guess maybe I was trying to say that it matters when our loved ones make their wishes known, and some families, like mine, will try to honor those wishes. As much as I wasn’t ready to lose my Grandmother, I believe my Mom and Aunt did right by my her. She’d never told me specifically, but even I knew she wouldn’t have wanted to be hooked up to all those machines and suffer through all that just to be alive, but unable to “live”.

And part of how I knew that was that as a young adult, I’d watched my Grandmother make difficult decisions with her own mother, my Great Grandmother. She’d had to decide when to let her own Mother go, instead of continuing to constantly have her hospitalized to keep her alive, when she was bedridden and had advanced dementia.... not even really talking.... basically a vegetable. If she didn’t want that for her Mother, who she loved dearly, it’s not hard to believe she wouldn’t want that for herself either.

I know it can be hard, but I think we all should make our wishes known, and as painful as it can be, I think those wishes should be respected by our families and medical teams, and honored. It’s like a final act of respect, love and kindness, and the gift of dignity I guess, even though it hurts so much.

The night my Grandmother died, we ended up trying to comfort her nurse. She hadn’t been a nurse long, and she was upset and crying because my Grandmother had died. Instead of being appalled at her being unprofessional, we were comforted by the fact that the nurse who’d been helping to care for her saw her as a person and not just a patient. That meant something to me, and I’m sure, my Mom and Aunt too. We all hugged and cried with her.

My apologies for rambling and forgetting what my original point was.  

Pink, thank you for sharing a wonderful and impactful story.  It helped me.

[Deleted]

Jul 2, 2020 20:53:54 GMT -5 @donethat said:

Jul 2, 2020 18:41:55 GMT -5 @pinkcshmere said:

When my dear Grandmother suffered what ended up being a fatal heart attack at 85 yo, she was airlifted from one hospital to another that was the only hospital in the area that uses a method (My apologies, Idk the proper term for the procedure) where they basically freeze the patient and gradually warm them back up, for whatever reason. My Mom and Aunt asked if my Grandmother survived this treatment, what her quality of life would likely be like. After some hemming and hawing, and my Mom and Aunt insisting on an answer, they  were told there was a good chance she would be a “vegetable”, because they wouldn’t actually try to “fix” her heart, because of her age.

My Mom and Aunt told them to stop, and undo everything, because that wasn’t what my Grandmother would have wanted.

I had a good friend who happened to work at the hospital my Grandmother was in, on the same floor where she was. I called my friend and asked her to please talk to me as my friend, not as a nurse. She confirmed my thoughts that even if my Grandmother made it through that particular episode, it was just going to happen again. And again, until she didn’t survive it. 

She also told me that the doctors had a problem with my Mom and Aunt asking them to stop the treatment. And she said that she’d told them “This is what we say we want, to have patients’ families involved in their care, right? And her children are both saying that this patient would not have wanted this, so what’s the problem?”

 This all happened on a Monday. They stopped the procedure that night. I saw my Grandmother while she was “frozen” and it broke my heart. The next morning, she woke up, to the Doctor’s amazement. I rushed to the hospital and was able to see my Grandmother awake. Still her feisty self, she made a face and licked her tongue out at me when she saw me. But she also kept telling me “I don’t feel good” and asking Jesus to have mercy and help her. When she closed her eyes and went to sleep that evening, it was the last time she was conscious before she died that Friday night. One of us was with her the entire time, which was apparently unusual because the doctors and nurses kept commenting on it.

It may be selfish of me, but I’ll be forever grateful that the “frozen” memory is not the last memory I have of her. The “frozen” sight was just that terrible.

I’ve forgotten what point I was trying to make by telling my Grandmother’s story. I guess maybe I was trying to say that it matters when our loved ones make their wishes known, and some families, like mine, will try to honor those wishes. As much as I wasn’t ready to lose my Grandmother, I believe my Mom and Aunt did right by my her. She’d never told me specifically, but even I knew she wouldn’t have wanted to be hooked up to all those machines and suffer through all that just to be alive, but unable to “live”.

And part of how I knew that was that as a young adult, I’d watched my Grandmother make difficult decisions with her own mother, my Great Grandmother. She’d had to decide when to let her own Mother go, instead of continuing to constantly have her hospitalized to keep her alive, when she was bedridden and had advanced dementia.... not even really talking.... basically a vegetable. If she didn’t want that for her Mother, who she loved dearly, it’s not hard to believe she wouldn’t want that for herself either.

I know it can be hard, but I think we all should make our wishes known, and as painful as it can be, I think those wishes should be respected by our families and medical teams, and honored. It’s like a final act of respect, love and kindness, and the gift of dignity I guess, even though it hurts so much.

The night my Grandmother died, we ended up trying to comfort her nurse. She hadn’t been a nurse long, and she was upset and crying because my Grandmother had died. Instead of being appalled at her being unprofessional, we were comforted by the fact that the nurse who’d been helping to care for her saw her as a person and not just a patient. That meant something to me, and I’m sure, my Mom and Aunt too. We all hugged and cried with her.

My apologies for rambling and forgetting what my original point was.  

Pink, thank you for sharing a wonderful and impactful story.  It helped me.

[Happy prose]

Well I think most people keep their pets alive too long too in the end. In hindsight, I'm for sure guilty of this. 

[TheOtherMe]

I know I kept my first cat alive too long and it was for me.

I have not made that mistake again and hope I don't make it with Lucy.

[countrygirl2]

I don't think I did. I was actually BJ passed on his own as I was to the point something was going to have to be done.

Black, maybe could have been let go a bit sooner, it broke my heart to see her put down, but she was 21. BJ was 16, they both had a wonderful life.

We are all just living organisms, sounds cruel but we are and at some point we are going to die. I think euthanasia needs to be allowed for those that want to go. I know my husband would choose that. As long as he is able and vital he wants to live. He said he will not be like his friend who took almost 4 years to die.  But he seemed to be able to keep going and doing till the last  6 months or so. Sounds like that was what he wanted.  We really should be able to choose if we are of sound mind. The problem with euthanasia is when others make that decision for us for other then health reasons. 

[buystoys]

When my mom was last hospitalized, she told the staff she was DNR.  I'm not certain she completely understands what that means, but she's been in treatment for lung cancer and is ready to die when the time comes.  Dad is DNR, but it makes sense for him.  He is blind and is going deaf.  He has no real quality of life any more.  He sits in his chair and listens to Sirius radio all day.

DH and I have durable MPOA for each other.  We've had discussions on what we want as far as intubation and continuing care.  Neither of us wants to linger on but neither wants to not intubate if it is for a short time only.  We both realize that the need for care can change once intubated and are willing to make a tough decision if necessary.

[weltschmerz]

I told my DS what my final wishes are, but I know he won't do it. He'll do everything he can to keep me alive, and should I die, he'll keep my dessicated body up in the attic, like Norman Bates.