When is ALS Consider End Stag

[Steve-F]

My mother is 81 and was diagnosed with ALS approximately 3 years ago. At her last visit to the ALS clinic her FVC was measured at 30% diaphragm muscles at 21% and 25%. Her oxygen level was at 95%. When I measured it last week her oxygen level was at 93%. She is on a feeding tube and has a bipap machine - which she doesn't like . She is still mobile but is very restricted. Her next visit to the clinic is in March. I was going to gather my siblings and have an end of life discussion with the doctors. I'm just not sure if this is the right time. Some decisions will need to be made and I want everyone in agreement. She has a living will and does not want to be on a ventilator. I think the end is within 6 month to a year but I don't want to rush the discussion.

 

[BrianD]

Getting everyone in agreement might be a lofty goal, and really the only opinion that matters is your mom's. So perhaps she needs to tidy up her documents, and then they can be discussed as to what she has decided. I personally would rather discuss this stuff one on one rather than bigger group. It is hard stuff to talk about, often with tears, and you may trigger a big cry-fest instead.

So with that, do what makes sense given your family dynamics.
But now is the time to get things in order.

 

[Barbie]

I disagree with Brian--with no disrespect. It is never too early to talk about these things--everyone even people without ALS should have plans and their family should know them. it does make it harder with mom having ALS, but she is also 81--not too early to talk about what she wants! It should definitely be about what does she want--not what you guys want. I think it is good for everyone to hear from her what she wants so you don't have a random sister or brother insist that mom would have wanted a ventilator when others think she didn't and she may not be able to convey her wishes at that moment. I am not sure you need to discuss it with the docs and the family though--I think you could keep it low key since she is not on her death bed ! at her next appointment, you and she could ask about the options for her, and then have a family meeting later after mom has time to think about what she wants. maybe not make it a "death meeting" but a conversation at a family get together like an Easter bbq.

It is not easy--but I know my dad is 87 and pretty healthy but I have had many conversation about him dying. Honestly though, I never wanted to talk about it until he had a heart attack 2 years ago at 85. it is hard to start the conversation, but he appreciates that I will take care of everything the way he wants.

 

[BrianD]

I disagree with Brian--with no disrespect.

Actually we're more in agreement than you think. You just explained it better. Thanks!

 

[Diane H]

You are not rushing things. With her respiratory numbers she is at high risk of severe respiratory distress or arrest if she catches a cold, seasonal respiratory flu (which flu shots don't prevent) or H1N1, the severe influenza that flu shots do prevent.

Your mother needs to be included in any discussion and the discussion needs to be ongoing to be certain that her wishes are her current ones.

Living Wills are legal and let family and doctors know the persons preferences but if any sibling chooses to object to the terms of her Living Will, he or she can delay or prevent it being adhered to if he or she pushes the issue. Doctors know that deceased people don't sue, but any family member can!

Having your mom assign Medical Power of Attorney gives that person the same legal standing in making medical decisions as your Mom would have if she could communicate. (It only applies if she is completely unable to communicate for herself or incompetent.) Medical Power of Attorney is a binding legal document. It is a difficult role for a loved one, but in situations where the family is likely to disagree, it is the one way in which her wishes can be enforced even if someone disagrees. It is extremely important to note that, unlike a Living Will, Medical Power of Attorney allows more flexibility for the Power of Attorney agent to consider the immediate situation, not just a blanket directive given. For example, if treatment or procedure wasn't desired by the patient but the situation turns out to be one not envisioned by the patient, or new advances have made the treatment less undesirable (better outcome, better quality of life, more affordable, etc.) or the family situation has changed, the agent can consider these factors and decide based on their understanding of the patient's general views. This puts the decision making in to "real time”, not past ideas and level of understanding. Ongoing communication, trust, and the strength to carry out the patient's wishes even if disagreed with are essential for the agent.

If the person assigned MPOA decides not to honor the wishes, they cannot be sued or legally forced to comply. The Medical Power of Attorney can be revoked by the patient as long as he or she can communicate. State laws, forms and details vary so look up the Medical Power of Attorney for your state.

 

[zoohouse]

I agree with Barbie, these things have to be talked about, that being said it is not easy for some. Things are so much more complicated with out a will, or a living will. First your mother's wishes are the most important, and with out a living will, if she goes into hospital through emergency it will depend on which family member is there as to what treatment she will get. If she passes without a will all of her accounts are frozen, and then it gets expensive figuring things out.

 

[BK2011]

Sorry you have to go through this, I'm sure your mom and dad are awfully happy you're there to help them.

I pretty much agree with what everyone has said. You know your family best so you're the best one to decide on how to go about discussing this with everyone. I discussed my wishes with my wife and daughters individually, one on one as was mentioned above, and yes there was a lot of crying. After that I filled out a DNR Form the VA had that covers a lot of different scenarios and whether I wanted my medical wishes followed strictly or loosely. I went over that with everyone again and stressed I wanted the girls to support their mom when it came time for her to make end of life decisions. That form got filed with the VA so they have a written record of my wishes. A copy of it is stuck on my refrigerator so if a rescue squad gets called to the house they have a written notarized document that should go with me to the local hospital for the ER DOCS to follow until I can be transferred to the VA or I check out. Since then I've talked to an attorney that was familiar with a legal document specifically for PALS that gives someone medical power of attorney but dictates what happens in given situations. Certainly, if you want your mom to make these decisions, you need to do it before you get to end stage, it takes some work but hopefully will make it easier on everyone once it gets to end stage.

Hang in there. God Bless.