My father is back in the hospital. He’s currently in intensive care with pneumonia but seems to be responding to the treatment fairly well. It’s still rather touch and go at the moment. Given his age (he just turned 89 in May) and status with the advanced dementia, though, we’re prepared for it to go either way at this point. So far, none of his major organs have failed so that’s a plus in his favor.
That’s not what I feel the need to vent about today. Not precisely. But it does lead up to it. As part of the treatment for the pneumonia, the hospitalist put him on a ventilator temporarily. Truly temporarily. It should be coming out today and then we’ll see how it goes. We’ve actually learned from a relative who has chronic lung problems and has gone to the same doctor that temporary use of a ventilator is standard treatment for pneumonia for her.
Only thing is that when we first started asking about when the ventilator would be removed this weekend – and this was before we finally got a direct conference with the doctor late last night – the nurses immediately started quoting from his Living Will as if taking the ventilator out wasn’t an option at this point. There’s only one problem with that, he’s not terminally ill and Barbara and I were looking at her like she was nuts. So, off the nurse went to call the doctor.
People, please learn this, remember this and hold it close to your heart, a Living Will is a document that only kicks in at the end of life and is conditional on certain factors, usually terminal illnesses. Yes, there can be variations in wordings and phrasings but that’s the general point of what they’re supposed to be about. However, over the last month I’ve learned that hospitals and nurses and social workers in general are obsessed with living wills and tend to think that’s the only thing that matters. Which is great, but they don’t seem to realize that there is another important document that does matter. It’s amazing to see how much their attitude changes once they realize we also have that document and they actually read it.
That document is a General Power of Attorney that includes a medical directive. That medical clause in his POA gives both my sister and I, separately, not jointly, but separately, as in either/or, full rights to make medical decisions for him when he isn’t able to make them. That document has basically been in effect for the last few years since he’s been living with me. Our mother has the same exact documents as do I naming my two children as POA.
The reason I’m posting this is that every one of you need to realize that you need these two advance directive documents made up for yourself. They may be called something slightly different in your state or territory but they should exist. Together, they give you a say in those medical decisions that you wouldn’t have any say in and that might cause considerable grief to your family, if from nothing else perfectly well-intention hospital staff that think they know what the heck they’re talking about when they don’t. Oye.
Above all else, encourage your older family members to get these in place as soon as possible and save yourself some future grief. Please.
Suisan, I think it’s because for the most part, the Living Wills actually address in writing wishes of the individuals. The only problem is that those wishes are solely conditional on those terminal states and are usually very limited in nature. The POA, on the other hand, doesn’t state wishes but gives someone much broader power to act on the individual’s behalf. I guess it seems like a contradiction to the staff one sense and why one really does need to fully understand the wishes of the person one is representing, hopefully.
Oy, Bev.
Good for you for sticking to your guns. Staff do focus on odd things, don’t they? I’m not sure that a lot of nurses really get the difference between the two. THey seem to think that the living will supercedes the POA? Because it’s like that patient is “talking” to them through the will?
I’ve seen similar situations happen when I’ve worked in law offices where the atty was a guardian for a ward of the state. Lots of people don’t GET IT that the ward cannot sign documents or be responsible for signatures. But they still need to be informed about medical procedures. But you cna’t ask them to sign a form saying that they were informed. That has to be the guardian. Very confused staff.
hang in there, kiddo. You’re not losing control. I swear.
Thanks everyone for the good thoughts.
And yes, JMC, they should recognize the medical POA and most of them do, but what we’re seeing is that we first have to get some of their eyes off that Living Will before they can seem to focus on the POA. It’s like an obsession. I even had one nursing home social worker read his living will and then start telling me whether he wanted a feeding tube or not two weeks ago. I literally had to restrain myself from rolling my eyes.
He now has a feeding tube but it has nothing to do with his living will. It has to do with Barbara and I seeing that he was still fighting for life and trying to feed himself on the day we had the consultation with his doctor about whether to proceed with getting it for him. He wouldn’t let anyone else feed him but he would put a cup up to his own mouth. How could we then say no?
Hell, yeah, these are stressfull decisions but I can’t imagine how much more stressful they’d be if we didn’t have these documents because believe me that even if the staff don’t always know, the doctors do. And both the hospitalist and his primary doctor have been wonderful.
And the staff have too for the most part. It’s just every once in a while you these truly off the wall interpretations of things and it throws you for loops and you have to regroup, find your center and tell yourself that you haven’t lost control of the process yet. It just feels like it sometimes.
I’m sorry to hear about your father’s declining health.
And sorrier to hear about the frustrations with respect to his ongoing care and treatment. When I first started in private practice, I did estate planning and one of the first things we did when people came in, even if they weren’t sure about the disposition of their assets, was to talk to them about their health care. In order to cover as many contingencies as possible, we had clients complete the form Living Wills and Advance Directives published by our state attorney general (which EVERY hospital social worker recognized), and we also prepared a Health Care Power of Attorney. Belts & suspenders? Yes, but necessary to get people to listen to family members sometimes.
Very stressful, my thoughts and prayers are with you and your family.
Thanks for all the good advice.
Tara
You should write it up and talk to your friends, Cindy, then go to a lawyer, preferably one experienced in trust documents, and have them draw up the advance directives. Because it’s only those documents that give someone the power to see those wishes done for you if needed.
I’m glad that your father has you and your sister fighting for his rights. I hope all goes well.
Weirdly enough I was thinking about writing up something that would cover many different things medically so that I know that my wishes will be met no matter what. Weird thing is it came to me this past week that I should get it all down and witnessed by friends who would not be making decisions based on emotions (like my parents or family).
CindyS