What's most important in a health care proxy?

[Acadie]

My folks are working on their wills, and struggling to figure out the health care proxy role. Do you think it's most important to have someone close by, someone with health care experience, and/or someone who is reachable and responsive to phone calls? Unfortunately we don't have all three in one family member. Everyone is trustworthy and willing to do it.

Person A--Close by, reachable and prompt replies, no health care experience

Person B--Far away, reachable and prompt replies, registered nurse

Person C--Mid-distance, not as reachable, very experienced with home health care, living wills, etc.

If you have experience with medical decisions requiring a health care proxy, who would you put as #2 backup after the spouse, and then as #3 backup to the backup? Also, if the spouse isn't up to it, have you found that health care providers will only talk with the health care proxy, or with other adult children as well?

Thanks for any thoughts on this.

Amy

[mlktwins]

I agree with happysmileylady.  For my dad, it is me because I am close and reachable.  My sister works in a hospital and would probably be better than me if she were local, but I have managed to learn a lot by talking to the doctors in person, getting my questions answered, etc.  It pays to be present.

So...I would pick A as backup to the husband and B as backup to the backup.

 

[Pawz4me]

IME the most important thing is picking someone with good judgment, and who is capable of making hard decisions if it comes to that.

[Farrar]

Well, I'll disagree that healthcare experience isn't a piece of it. I think having experience navigating a health care system is important for getting quality care. Maybe a bit less so for proxy decisions, but not entirely. I mean, I've witnessed relatives who were navigating without experience and those navigating with and the ones with got better care, including end of life care. It should be that they come to you with all your options clearly, but they don't.

If Person A and Person B are equally trusted in their judgment by you, I think I'd probably pick Person B.

[Corraleno]

As someone who recently went through this with a relative (for whom I was the proxy), I think being physically present trumps healthcare experience. I can't imagine having to do this from a distance. I was at the hospital nearly every day, and once we decided to move ahead with hospice, I was the one making all those arrangements, handling insurance, coordinating with the different levels of carers, etc. I don't think the millions of things I needed to take care of could have been handled very easily or quickly over the phone. IMO it's extremely important for the patient to have an advocate who is right there, who can see the patient and can get immediate answers to questions from healthcare and hospice staff as they arise. So I would definitely choose A from your list as the primary backup.

If person B could get there quickly when necessary (e.g. could fly in within a day or so), then I would probably go with that person as the backup to A, just because they are easily reachable and reply promptly. If Person B can't travel easily but Person C can, then I might go with Person C as the backup to A. But A would definitely be my first choice.

[Acadie]

Thanks so much for this feedback, everyone! 

[TechWife]

I agree with the others - proximity matters, but responsiveness matters, too.

My mothers advance directive was written so that all surviving children could make a decision. If person A was not available, they were to move on to person B, if they couldn’t get A or B, they would move on to C. If A,B & C were unreachable, they were to move on to person D. 

The night my mother had her brain hemorrhage, they got all the way to person C before someone answered their phone, and she was also the first person to get to the hospital, even though she lived the farthest away from the hospital of those first three. I was person D and when my brother called me to tell me what was going on, no one in the family could reach person A. I actually called the local police to have them go to her house to wake her up. Her phone wasn’t charged. By the time she got to the hospital, person B & C had already discussed the treatment plan with the doctors, seen the CT scan, talked to me on the phone and we had determined that hospice care was the way to go. 

Very important is detail, though. They need to communicate their wishes to family clearly and choose the person they think will honor them. They need to decide about feeding tubes, artificial life support and recesutation. Under what circumstances do they want these interventions? What if there is no hope for a meaningful recovery? What if the person has dementia and no longer recognizes family, friends and can’t participate in meaningful relationships? What does “meaningful recovery”mean to them? What is a “meaningful relationship” to them?  Do they want a DNR past a certain age? 

For the family, you need to realize that it will be an issue if the children are not united, which is why communication is so important. Also, know the state law regarding revocation of a DNR. In some places it can be done verbally by any family member that is in the room. The medical staff isn’t going to stop and make a bunch of phone calls at that critical point. A patient can also verbally revoke a DNR. Know the law on who has to sign a DNR - does it need to be signed by a physician? This is important to know so that no one waits until it is too late. I had signed a DNR for my father and it was waiting for the doctors signature when he went into respiratory arrest and ended up on a ventilator because the ED doc wasn’t going to wait around to talk to the family doctor or wait for family to show up. He had no idea that my dad had dementia, didn’t know his wife or children, and was already losing the ability to chew & swallow, had lost his vision and had a great deal of difficulty walking. He tried to do right by my dad. We had him extubated after all the family arrived and he lived for four more days before he died. 

Also, thank your parents for thinking ahead and setting all of this up ahead of time. It’s a great gift to the children. 

Edited January 29, 2019 by TechWife

[Acadie]

9 hours ago, TechWife said:

I agree with the others - proximity matters, but responsiveness matters, too.

My mothers advance directive was written so that all surviving children could make a decision. If person A was not available, they were to move on to person B, if they couldn’t get A or B, they would move on to C. If A,B & C were unreachable, they were to move on to person D. 

 

TechWife, thanks so much for suggesting this option, and explaining how it worked when your family faced a health crisis. A similar approach might work really well for us.

I also appreciate the questions you raised that my parents will need to answer as they write their advance directives. Agreed that it's helpful to be sorting this all out now--and though dh and I have proxies and health care directives written up, this makes me want to review those decisions as well.

Amy  

[Ottakee]

Yes, sort this all out now.   Can persons A,B and C communicate easily with each other?  If so, go with closest and most responsive but I think having someone with medical experience/knowledge of end of life things is important.

I have helped out with 4 family members in past few years with this and while I was not the closest relative (in distance or relationship) in a few cases I was able to get there and I have experience in the end areas.  I hope I was helpful as often times the family didn't realize the seriousness of the situation, the reality that extra measures would prolong death but not save a life, etc.  

Make sure the wishes are known clearly on feeding tubes, intubation, CPR, etc.  Some doctors really push for doing "everything you can" when in reality the patient will not get better even with these measures and they can increase suffering.  Other doctors are very good about being realistic about quality of life, making things as comfortable as possible at the end, etc.

[Annie G]

17 hours ago, Pawz4me said:

IME the most important thing is picking someone with good judgment, and who is capable of making hard decisions if it comes to that.

The making hard decisions/facing reality is VERY important.  It’s really heartbreaking to watch a parent suffer because the caregiver won’t face reality and/or is incapable of making hard decisions.  

[Selkie]

3 minutes ago, Annie G said:

The making hard decisions/facing reality is VERY important.  It’s really heartbreaking to watch a parent suffer because the caregiver won’t face reality and/or is incapable of making hard decisions.  

Totally agree. We are currently going through a very difficult and sad situation with my FIL because of this very reason - the person with medical POA is refusing to deal with reality and get him the care that he needs.

[Annie G]

10 minutes ago, Selkie said:

Totally agree. We are currently going through a very difficult and sad situation with my FIL because of this very reason - the person with medical POA is refusing to deal with reality and get him the care that he needs.

And it’s not easy to step in and improve the situation. 

We worked through this with mil and now I’m in the same position with my dad. My sister in-law and my sister are exactly alike. And it’s heartbreaking. And infuriating. 

 

Edited January 29, 2019 by Annie G

[Acadie]

I'm so sorry for the pain your loved ones and families are facing, Selkie and Annie G, with health care proxies who aren't up to the task. It underlines for me just how important this decision-making and planning can be.

Praying for a change of heart for your family members in this role, to see what's most compassionate and truly needed.

Amy

[NorthwestMom]

17 hours ago, TechWife said:

I agree with the others - proximity matters, but responsiveness matters, too.

My mothers advance directive was written so that all surviving children could make a decision. If person A was not available, they were to move on to person B, if they couldn’t get A or B, they would move on to C. If A,B & C were unreachable, they were to move on to person D. 

The night my mother had her brain hemorrhage, they got all the way to person C before someone answered their phone, and she was also the first person to get to the hospital, even though she lived the farthest away from the hospital of those first three. I was person D and when my brother called me to tell me what was going on, no one in the family could reach person A. I actually called the local police to have them go to her house to wake her up. Her phone wasn’t charged. By the time she got to the hospital, person B & C had already discussed the treatment plan with the doctors, seen the CT scan, talked to me on the phone and we had determined that hospice care was the way to go. 

Very important is detail, though. They need to communicate their wishes to family clearly and choose the person they think will honor them. They need to decide about feeding tubes, artificial life support and recesutation. Under what circumstances do they want these interventions? What if there is no hope for a meaningful recovery? What if the person has dementia and no longer recognizes family, friends and can’t participate in meaningful relationships? What does “meaningful recovery”mean to them? What is a “meaningful relationship” to them?  Do they want a DNR past a certain age? 

For the family, you need to realize that it will be an issue if the children are not united, which is why communication is so important. Also, know the state law regarding revocation of a DNR. In some places it can be done verbally by any family member that is in the room. The medical staff isn’t going to stop and make a bunch of phone calls at that critical point. A patient can also verbally revoke a DNR. Know the law on who has to sign a DNR - does it need to be signed by a physician? This is important to know so that no one waits until it is too late. I had signed a DNR for my father and it was waiting for the doctors signature when he went into respiratory arrest and ended up on a ventilator because the ED doc wasn’t going to wait around to talk to the family doctor or wait for family to show up. He had no idea that my dad had dementia, didn’t know his wife or children, and was already losing the ability to chew & swallow, had lost his vision and had a great deal of difficulty walking. He tried to do right by my dad. We had him extubated after all the family arrived and he lived for four more days before he died. 

Also, thank your parents for thinking ahead and setting all of this up ahead of time. It’s a great gift to the children. 

This is great advice! Like X 100