Advice for having the end of life talk

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Distinguished member
Dec 2, 2020
Lost a loved one
Long Island
My PALS (my father) is coming over on Saturday and I plan on having the talk with him regarding end of life decisions. His living will states no feeding tube or mechanical ventilation but that document was made before we knew he had ALS.

I have done a lot of research on what the future may hold (PEG/NIV/Trache) but I wanted opinions from everyone here who had these discussions before as a PALS themselves or as a CALS. I do not think he has done much if any research himself as to live in the moment. He does not like talking about the future.

What advice do you have for talking about it? What information was very useful to know? Any regrets? Anything that should be avoided?
he likely wants to keep his wishes for the situations he was probably thinking of - a catastrophic medical event like a cardiac arrest with anoxic damage, a severe stroke, a traumatic brain injury from an accident.
unless he becomes demented he should not need the advance directives to be implemented for ALS for a feeding tube. I would encourage him to consider it very differently as a PALS than before. I am very pro feeding tube. It is easier for the PALS and the family when eating becomes difficult. Quality of life is better. I speak as someone eho has had a family member refuse and another delay until it was almost too late.
often PALS who end up vented do it in a planned way but sometimes it happens in an emergent situation.
I think it is worth discussing too his general philosophy as things could arise if he were ill that are not explicitly covered.

whatever he wants he should tell everyone who might feel they have a stake in this. Other children? Siblings? partner?

He has some cognitive effects. He is by no means demented but it is a concern for the future.

My brother will be informed of this conversation but he needs to stay at home with my mother (she has severe psychotic problems and cant be left alone/cant be around any of these conversations). She is seeing a psychiatrist which hopefully will help but this adds a whole level of difficulty for us. Her issues started before we were even concerned about ALS for my dad.
I would show him pics/video of a BiPAP, feeding tube, etc. but I don't think it's a single conversation if he is unfamiliar with these, and many people do better with small bites. First is, here are some scenarios and options (e.g. lose ability to swallow enough to get enough nutrition for life, lose ability to breathe well enough without help for life, etc.) Next is what is important to you in deciding what options are worth considering, e.g. what were you thinking when you signed the original directive? Then is, how can we apply these to the decisions that you should document. If he has some cognitive impairment, that should be included in the scenarios since it may get worse.

It is also important that he knows that he does not have to document every scenario if he has or will designate a health care proxy that he trusts and discusses his priorities for the end of life, e.g. under what circumstances is life still worth living, when should comfort be chosen over survival (i.e. when you stop measuring morphine or food), and when it is time to go, with that person. If the proxy knows the answers to those questions, that is really the heart of it.
I just wanted to share with you that your answer is very helpful. I know this isn't my question that I asked, but I was reading this thread because I was curious myself. My father had the same things in his living will. I've talked with him about all of these things, but the question about when life should be about comfort instead of survival is a very important question and one that I do not believe anyone has asked my father. I thank you for your answer.

I am glad this conversation has helped you.

I had the first discussion for my dad. He said he did not want any intervention but he will think about it and we will talk about it again. He had a clinic visit last week and they gave him suggestions for easy to eat foods and stretches to do. They said his breathing was alright but they called him a few days ago saying they are sending what I believe is an NIV "just in case." This was hard for him to hear and I am not sure if he intends to use it but at least we have it.
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