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I lost my dad recently (he was 84 and lived a wonderful and healthy life, which I consider a huge win for him). He had a terribly bad stroke that left him very

by nlh 8y ago

I lost my dad recently (he was 84 and lived a wonderful and healthy life, which I consider a huge win for him). He had a terribly bad stroke that left him very much alive, but without the ability to speak, read, or write. He was a professional book reviewer and writer for much of his life, and continued to read, write, and think with voracity up until the minute before his stroke (he was setting up his Series 4 Apple Watch at his desk when the stroke hit ;) Not an ounce of cognitive decline into his 80s, which we were all thankful for. He spent about 10 days in the hospital after the stroke. He was mostly lucid, glad to have the family around (thrilled to have his grandson there), but clearly frustrated that he literally could not say a word to us. At one point I handed him his iPad Pro so he could, perhaps, type a bit, but he looked at me and shrugged when the keyboard popped up. That part sucked. He developed a heart arrhythmia and pretty severe pneumonia very quickly, and after a week or so of minimal cognitive improvement, the attending sat me, mom, and my sister in a room to discuss plans. He explained that, of course, they could and would do the "everything we can" bit if we wanted, but that dad's Living Will (*note: highly recommended for everyone to get one) was clear that if he couldn't live a comfortable life after this sort of debilitating event, he wanted only palliative care. The attending also explained that there was "a 0% chance he'll regain cognitive abilities at this age to live anything near a normal life." It took us less than a minute to all vehemently agree that the right decision would be to move immediately to palliative care, to let things take their course, and let him spend his last hours/days in peace. The attending told us he was shocked at how easily we agreed -- that most families have a hard time letting go and that he often has a difficult job trying to balance the need to be pragmatic with the wishes of families who might not be in a rational state of mind. He actually thanked us for being so level-headed. Dad died about 2 days later in absolute peace, with family around, a warm and wonderful nursing staff taking care of him, and honestly, I wouldn't have had it any other way given the circumstances. I share this not to gloat or preach that our family is somehow better than those who choose to request "full code", but as an anecdote to let people know that it's ok to let your loved ones go peacefully. Even in the months since this happened, none of us have even a single ounce of regret about the way things were handled.

lmkg 8y ago
I want to thank you for sharing your story, and also want to point out what I believe to be the most important point: Be clear with your loved ones what each of you considers "life worth living." Communication is paramount, and doing it ahead of time is also paramount because various situations mean it can't be done in the moment. The goal and ideal scenario is that when circumstances require it, your loved ones do not feel that they are the ones making a decision. They should feel that they are carrying out the decision that you already made for them, with minimal interpretation on your part. I was in a similar situation with my mother, and without going into too much detail, it was a significant burden taken off of me that she had made it very clear (both in person over the years, and through legal documents) what her wishes were. It is honestly something that I'm very thankful that she did, and recommend to others, especially those facing eminent medical issues.
belorn 8y ago
A very close relative of mine got a similar massive stroke when he was around 60 that also hit the language center. Even if I was quite young I remember that moment of frustration in the hospital when when he could not talk with either of us. The doctor explained he would unlikely survive the night, and even if he did he would not be able to leave the hospital bed. His daughter did the same however what the person in this article did and demanded full treatment including surgery which the doctor advised against. Against very unlikely odds he recovered. A few years later he was biking to the bank and climbing the cherry tree on the yard. His ability to make himself understood was extremely limited where basically only his daughter sometimes understood him, through writing and reading did very slowly come back to a minor degree many years later. He died less than a year ago at age 93. I writing this not inject doubt in your decision, and there are many differences, but I would like to share how impossible the decision can be. I read articles like this and acknowledge the massive amount of unnecessary pain many has to go through in their last days, but if I end up having to make a similar decision I don't know what I would do or think.
- silencio 8y ago
  The decision is easier when you have conversations and put wishes in writing before they are necessary. And update them as needed. My dad has ESRD and we've had some conversations about what he would want at the end. Many of the potential issues we've discussed involve getting 2nd+ opinions if necessary... but he also makes it clear (and I agree with him) that at some point the treatment and recovery process itself might not be worth it for an unknown recovery for him. I think this communication respects that this is a difficult decision, and I've come to the conclusion that decisions can be reached that may not be the "best" objective decision (e.g surviving another 33 years) but it is a decision that the person supports, so that you as a survivor can be at peace with it too. So like, if my dad were in a situation similar to your relative - I already know that he would feel that the numerous procedures and years of recovery outweigh 33 more years of life. I would not seek full treatment. Knowing this makes me at peace with anything that can happen, more than anything else we could do. I was inspired largely by Atul Gawande's book "Being Mortal" - where he talks about and discusses ways that we can figure out how to live our life at the end, rather than be worried about death.

by nlh 8y ago

lmkg 8y ago

I want to thank you for sharing your story, and also want to point out what I believe to be the most important point: Be clear with your loved ones what each of you considers "life worth living." Communication is paramount, and doing it ahead of time is also paramount because various situations mean it can't be done in the moment. The goal and ideal scenario is that when circumstances require it, your loved ones do not feel that they are the ones making a decision. They should feel that they are carrying out the decision that you already made for them, with minimal interpretation on your part. I was in a similar situation with my mother, and without going into too much detail, it was a significant burden taken off of me that she had made it very clear (both in person over the years, and through legal documents) what her wishes were. It is honestly something that I'm very thankful that she did, and recommend to others, especially those facing eminent medical issues.

belorn 8y ago

A very close relative of mine got a similar massive stroke when he was around 60 that also hit the language center. Even if I was quite young I remember that moment of frustration in the hospital when when he could not talk with either of us. The doctor explained he would unlikely survive the night, and even if he did he would not be able to leave the hospital bed. His daughter did the same however what the person in this article did and demanded full treatment including surgery which the doctor advised against. Against very unlikely odds he recovered. A few years later he was biking to the bank and climbing the cherry tree on the yard. His ability to make himself understood was extremely limited where basically only his daughter sometimes understood him, through writing and reading did very slowly come back to a minor degree many years later. He died less than a year ago at age 93. I writing this not inject doubt in your decision, and there are many differences, but I would like to share how impossible the decision can be. I read articles like this and acknowledge the massive amount of unnecessary pain many has to go through in their last days, but if I end up having to make a similar decision I don't know what I would do or think.

silencio 8y ago
The decision is easier when you have conversations and put wishes in writing before they are necessary. And update them as needed. My dad has ESRD and we've had some conversations about what he would want at the end. Many of the potential issues we've discussed involve getting 2nd+ opinions if necessary... but he also makes it clear (and I agree with him) that at some point the treatment and recovery process itself might not be worth it for an unknown recovery for him. I think this communication respects that this is a difficult decision, and I've come to the conclusion that decisions can be reached that may not be the "best" objective decision (e.g surviving another 33 years) but it is a decision that the person supports, so that you as a survivor can be at peace with it too. So like, if my dad were in a situation similar to your relative - I already know that he would feel that the numerous procedures and years of recovery outweigh 33 more years of life. I would not seek full treatment. Knowing this makes me at peace with anything that can happen, more than anything else we could do. I was inspired largely by Atul Gawande's book "Being Mortal" - where he talks about and discusses ways that we can figure out how to live our life at the end, rather than be worried about death.