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I have been in a very troubled state of mind for the past few months. I feel like I should have a end-of-life care conversation with my parents to understand what their views are and have them have a say in their quality of life. But I am not sure how to start the discussion. My sibling who lives in India and takes care of my parents is fairly orthodox and believes in intervening and extending the life as much as possible. I understand the need and desire to have the loved one in your life as long as possible but at some point it becomes a torture for everyone involved (the patient and the care givers). In this situation the patient is frustrated and refusing care (has been suffering for some years now) but everyone else is hell-bent on taking extreme measures.
Has anyone been through this? How did you approach the issue? Do you first talk to and convince the care givers and then talk to the patient ? or the other way round? I feel like I might not have much of a say since I am not on the ground giving the care... I have only been providing financial help and yearly visits. Should I keep my mouth shut and see everyone suffer?

SamSan;657926I have been in a very troubled state of mind for the past few months.

Hope and pray that you find your peace. It is still a touchy topic. Probably with our generation, we will approach it rationally, without too much emotions, with our kids.

1. If your parents are fine, then go ahead and have the conversation with them.
2. It doesn't matter if you are their primary care giver. You approach it as one of your parent's kids.
3. If a sibling wants to go the distance, in spite of you considering it a torture, it is their prerogative. Recognize their choice.
4. Don't feel guilty that one is only providing financial help. Each does what they can do in their lives. Don't torture yourself into believing that it is lesser form of affection and care for one's parents.

The above are my guiding principles, in general. I try to live up to it, but don't expect much of others. It is not any advice, but my opinion.

Palliative care - there are many books on the subject. It probably is still not mainstream in India. We have our own ways of taking care of the elderly, even if it means some form of suffering. Our culture has tuned us into believing that suffering is part of life (thanks probably to Buddha's influence on Hinduism over a period of time?).

boca;657928
3. If a sibling wants to go the distance, in spite of you considering it a torture, it is their prerogative. Recognize their choice.

Thanks Boca for providing your take on this.
My guess is, in my sisters mind - it is more like 'It is wrong to talk about/consider any other option' . I am hesitating to bring that topic up as somewhere in the corner of my mind I also think that his health will improve and we will get few more good years with him, although the rational part of me knows that it might be wishful thinking. My Dad never complains no matter what is wrong. He always says "I am doing great" when I talk to him, even when he had a pelvic fracture and was in bed rest with a great deal of pain. And when he is starting to refuse treatment and refuse eating, it just tells me how frustrated he is and he is just "Done" fighting. It just breaks my heart to think about it..

Personally I see this as a super advanced topic. For beginners, I find it super hard to have parents address the topic of a will. If parents, in-laws, uncles were employed in the public sector in the 70s, they now own property that is worth a lot of money. The houses they live in, and the investments that they have made all add up to a considerable amount. Our generation living abroad, or employed well in today's India may not be dependent on the assets of the parents, but it would be good to know what exactly is in the minds of parents. Forget children reading the minds of these men, their wives are clueless. My aunt did not know what was in the mind of my uncle. He passed away leaving behind a big plot/house that he lived in, and a much smaller plot in a smaller town. It is now for the kids (who are super well off) to sort it out. Siblings who were super close, who now itch to start fist fights. A sorry state for the mom to stand witness of this dog fight/court battles.

My own father can rightfully criticize these fighting siblings, but will not go that extra step of creating his will. Even after dropping clues like showing him my own will, it continues to be a super touchy feely topic that cannot be started :)

GutsyGibbon;657931Personally I see this as a super advanced topic. For beginners, I find it super hard to have parents address the topic of a will. If parents, in-laws, uncles were employed in the public sector in the 70s, they now own property that is worth a lot of money. The houses they live in, and the investments that they have made all add up to a considerable amount. Our generation living abroad, or employed well in today's India may not be dependent on the assets of the parents, but it would be good to know what exactly is in the minds of parents. Forget children reading the minds of these men, their wives are clueless. My aunt did not know what was in the mind of my uncle. He passed away leaving behind a big plot/house that he lived in, and a much smaller plot in a smaller town. It is now for the kids (who are super well off) to sort it out. Siblings who were super close, who now itch to start fist fights. A sorry state for the mom to stand witness of this dog fight/court battles.

My own father can rightfully criticize these fighting siblings, but will not go that extra step of creating his will. Even after dropping clues like showing him my own will, it continues to be a super touchy feely topic that cannot be started :)

Yes, there are very few people who think practically in this aspect. We (my hubby and I )are in fact in the process of creating our will/medical directives. We just saw our friend go through an unfortunate and unexpected situation where her FIL was comatose due to head injury and due to lack of will/medical directive, his wife had to make the difficult decision of pulling the plug after a month and half in that condition. This was in US and this family is white American. The incident got us thinking in more practical terms and not having our loved ones make those un-imaginably hard decisions!
Its a totally different ball game when it comes to our parents and generally our Indian society. As you rightly point out, both my parents and inlaws don't have a will . They don't own a lot of wealth, just enough to take care of their own finances. In fact I chip in everytime they have any medical expense as I dont want them to tap into their FDs. But I have no idea about their accounts. I have no interest and so haven't tried to talk to them about will. My sister knows everything and takes care of everything and I am ok with that.
But with end of life discussion, it is different, as it involves suffering and patients right to choose if he/she wants to extend the life like this! But I agree it is a very advanced topic and I cannot seem to bring it up!

I want to point one point here. There is a implicit assumption like many here, that I will be mature and I'll make a decision which is binding and can be used later, and why cant the world do it as well ?


Sounds good, but take the analogy with the existence of this forum itself. Adults 20+ years raved about their patriotism, affection to their parents and culture and what not and visited US, and after 4-5 years, overruled the strong decision they made and reversed it and will present many convincing arguments in its favour, right ? And this too statistically overwhelming (say 99%) and in big absolute numbers.


So are we supposed to agree to a statement made by a person long before the event actually happens, and assume it is binding and if they can do it again now, they will still make the same ?

srinpo;657994I want to point one point here. There is a implicit assumption like many here, that I will be mature and I'll make a decision which is binding and can be used later, and why cant the world do it as well ?

Sounds good, but take the analogy with the existence of this forum itself. Adults 20+ years raved about their patriotism, affection to their parents and culture and what not and visited US, and after 4-5 years, overruled the strong decision they made and reversed it and will present many convincing arguments in its favour, right ? And this too statistically overwhelming (say 99%) and in big absolute numbers.

So are we supposed to agree to a statement made by a person long before the event actually happens, and assume it is binding and if they can do it again now, they will still make the same ?

Are you referring to living will? It can be changed anytime. It is not some permanent document that one signs when young and can't change it later.

boca;658004Are you referring to living will? It can be changed anytime. It is not some permanent document that one signs when young and can't change it later.

No. I am not referring to formal documents here. The way I understood this thread is it is about a person making the hard decision about end life decisions and not being sentimental about it and ensuring that is communicated to relevant folks.
Living will could be one formal way but it can even simply being calling the relevant people and telling them about it.
But still whatever mode it is even if you can change it anytime then can it be used at end of life period. What if it is not old say 3 years. One can't be just updating it just before going to coma.

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srinpo;658005No. I am not referring to formal documents here. The way I understood this thread is it is about a person making the hard decision about end life decisions and not being sentimental about it and ensuring that is communicated to relevant folks.
Living will could be one formal way but it can even simply being calling the relevant people and telling them about it.
But still whatever mode it is even if you can change it anytime then can it be used at end of life period. What if it is not old say 3 years. One can't be just updating it just before going to coma.

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It is mainly about your take on life. Quantity Vs Quality? Some people want to hang on to dear life as long as possible, understandably so, because the thought of departing from loved ones is excruciating. For others it is about dignity and not having to spend time in a hospital or home attached to feeding tubes and ventilators and stuff. And these decisions need to be made when one is in their sane mind and can think clearly. Off course no person in their 20s or 30s thinks about making such wishes known... but when you reach 60, you should let someone know what is your take. At that point, I don't think your take on life will change... and if by any chance it does, let that know as well. And yes, it does not have to be formal document!

srinpo;658005What if it is not old say 3 years. One can't be just updating it just before going to coma.

It is one's own choice and they can change it anytime. Say that I am going into a brain surgery and I have always thought that I don't need to be on life support, if something goes wrong. I could very well change my mind just before going into the surgery and state that I do want to be kept alive, as much as it is medically possible.

The key is not what I want to do, but what I want others to do with me, when I can't make the decision about myself. Without that directive, I am putting others in a dilemma (moral or emotional).