[editor’s note, by pastordan]—Promoted by pastordan. Important stuff here. I haven’t taken care of it. Have you?
The pure ghoulishness surrounding the Terry Schiavo case has caused more than one person of my acquaintance to turn away sickened whenever her name is mentioned in the media or conversation. I understand entirely. The GOP transformed what should have been a private matter into a pro-“life” circus, three whole rings filled with partisan ass-clownery, politicos seeking political advantage from personal pain.
We had confirmed today what Schiavo’s doctors – the ones who actually examined her and had credentials relevant to her condition – had months ago told her husband, her parents and siblings and, because of the rightwing-generated publicity, the rest of us: Schiavo was no more than a living cadaver when her feeding tube was removed.
No empathetic person would wish on their worst enemy the public spectacle that accompanied Terry Schiavo’s departure. But everyone owes her a debt for reminding us to do all that we can to ensure that what happened to her doesn’t happen to us. Today offers another reminder.
In the weeks leading up to Schiavo’s final breath, I heard dozens of people say – and uncountable others write comments at numerous blogs – that they were going to tell family and relatives in writing about what exactly they would wish done (and not done) should something awful happen to them.
So. Have you done it? No?
I understand. We all have a lot on our minds. And on the blogs, we’re off to a new topic every half nano-second.
Even if you have gotten your wishes down in writing, but you moved recently or picked a generic form to fill out, legalities vary widely from state to state, so there is some dispute about whether Living Wills and advance directives are “portable.” It makes sense to update. Moreover, the results of some court cases indicate you should be as specific as possible.
You can find some good information about all this at the ABA Commission on Law and Aging, and get forms from the National Hospice and Palliative Care Organization.
Don’t put it off. Think of your friends and family. If you should wind up – gawd forbid – like Terry Schiavo, they will be the ones who are devastated.
Cross-posted at The Next Hurrah.
Forms (from the link above to the National Hospice and Palliative Care Organization) for my state downloaded and printing now.
Thanks for posting here and always for your amazing writing, thoughts and diaries. You always make me think about my life and what I can do in this world. I know this has been a tough year for you and your family, I am just glad we still have you around here. Peace my friend.
My very elderly mother died at around the same time as the Terri Schiavo incident. It was possible that with heroic measures she could have been saved, but she would definitely have been vegetative in that event. Thankfully, she had a living will which spelled out her wishes, although I don’t think anyone in the family would have thought that it was a really swell idea to keep her alive.
Immediately after that, the Schiavo case hit the news once again. Not only did my husband and I fill out living wills, but I forced the forms on my children (in their early 20s). That whole situation was soooo sad, I don’t want anyone whom I love to ever have to go through something like that.
My son and daughter are 21 and 19, and we’ve done the same thing.
It wasn’t just the Schiavo matter that prompted us to do so, it was the simple fact that although they’ve entered into legal adulthood by age, we’re still their parents.
Without a clear written indication that we have permission to participate in their lives in this way, we could be shut out.
A durable power of attorneym for parents of legal-aged children is an excellent idea.
I’m not sure it would have made any difference for Terri.
As I understand this legal document, that when you make one out, that is to say when there is nothing that can be done for you excpet to make matters worse for you, you have the final say in the decision making. There are somethings and circumstances that differ from case to case, but for the most part it makes the decisions for yourself known. I hve seen familys go beserk and nuts when they find out a living will and durable power of attorney has been made, that is to say they didnt care until the time came to care.
I would like to think things would have been different for Terri, if she had one instead of just words to her husband.
to sacrafice her to the God of More Votes, I think they would have declared any document as ‘forged’ just like they are now claiming that the autopsy results are dubious.
But of course most of us would not be so unlucky and should complete the paperwork.
and it specified that her husband was to make the ultimate decisions should she be unable to do so (due to coma, PVS, whatever), the parents theoretically wouldn’t have even been able to become involved.
When my mom set up her “living will”, she also made sure she had the durable medical power of attorney for my oldest sister; that way, my sister was able to get my mom into hospice care when she was unable to remain at home in her final weeks.
She had a “living will” and it made all the difference when her time came. She clearly spelled out under what circumstances she wanted what kind of care. In a few places she left alternatives where we could make a decision for her. The physicians we’re all very respectful of her wishes and let our family let her go with dignity. It also meant that our family could come together in our grief instead of fighting over what mom would have wanted.
AMEN!!!!!! dignity is the key word here…Thanks…and to be ALLOWED to grieve is another area of respect.
This is how it should be. I’m glad to hear that the health care team was supportive of what your mom and you agreed was important to her.
Indeed.
But remember, as my lawyer told me, that you need to exhibit that you are in a normal and sound frame of mind when initiating the living will. Families that REALLY, REALLY disagree with your decisions on death with dignity and organ donation can still fight these agreements.
His recommendation? Get a durable power of attorney for your spouse if you have one. If you don’t, see if you can’t get a very trusted friend to sign a limited power of attorney for emergency medical care. He did, and didn’t charge me for his time on it (he’s a good family friend).
For God’s sake, take MB’s advice and talk to a good lawyer about this!
I would also like to add that it is CRITICAL that you make sure the person with access to your living will will carry out your wishes if the time comes. Exactly a year ago, my father suffered a catastophic heart attack, but they brought him back after too much time had passed, and he was in a PVS. His fourth wife (nutwing Christian), who had not called the ambulance quickly enough, went home from the hospital and hid the living will that he kept in his office.
It was only after 2 weeks of my broher, myself, my aunts and uncles, and everyone else who knew my father kept telling her we knew what his wishes were, and that he never would have wanted this, that she was persuaded to do the right thing. As his children, we were powerless to the wishes of #4.
Thanks for raising it again, MB.
Talking about death, and talking about how you want it to be experienced among your family and friends, is such a difficult conversation that it can seem surreal.
I deal with death every day in the normal course of my work. Sadly, so often it’s much more painful and heart-rending than it needs to be.
I’m not talking about how death can be easy – it’s not, and it’s not meant to be. I’m talking about how death can have some conscious meaning for everyone involved, about how death can be seen and experienced as an inevitable and valuable part of living.
We all know that we’re going to die – in the end I don’t think many of us are afraid or in denial of that simple fact.
What I beieve we’re all mostly afraid of is that we’ll die alone, or in pain, or out of control – or all 3.
And without taking the conscious and concrete action of talking about it with our closest family and friends, and encouraging them to do the same with us, we’re increasing our chances that we will indeed die in pain, out of control, and/or alone.
Addressing this issue is not as straightforward as filling out a form, or hiring an attorney. There’s so much more that needs to go into it.
But I always point people towards a tool called The Five Wishes, because it includes the kind of guidance that can help you build a more complete conversation about what’s important to you, as it also guides you to record and communicate your wishes clearly and in writing.
Having the conversation, and going on record, is the best way to open the doors to an essential part of life, and to insure dignity and respect at such a time.
Peace.
Rub… Looks like a lot of useful information… And I never even considered any spiritual or emotional perspective of it… Thanks!
Thanks. I believe that in the end it’s all about the emotional and spiritual aspects. Once you’ve completed your work you can keep a copy on the fridge, but make sure someone knows where the original is ;^)
HEY RUB, WOULD YOU DO ME A FAVOR AND GO TO THE DIARY ..the one about life death and all inbetween..would love to hear about your thougths more on that Thanks
I took a quick look (you’re talking about shirlstar’s diary, right?), and there’s a lot more there than I can work with right now – so I plan to spend more time there later tonight when things are quiet at work (love how the Booman diaries stay around longer – love the pace here).
I’m an oncology nurse working in bone marrow transplant right now. What’s your area of practice?
To me, this whole issue of life and death, on the personal and immediate level, is about as important as it gets.
Thanks for pointing me to shirl’s diary.
My husband and I did this about 10 years ago.
We are currently working on one for my mother who turns 80 this year. Since UT passed the hate law last year it had some odd twists in it. One is that immediate family members (son or daughter) can not make decisions for an elderly parent. This despite that all of the children in our family are in agreement with Mom’s decision and choice.
Do not presume that as an adult child you can make a decision for an elderly parent. The state may override that decision.
Get the paperwork done.
have the conversation – it’s a wonderful opportunity to show real love and care.
And write it down.
You and your husband were sure ahead of the crowd on this one, Sally. Your mom is lucky – sounds like she did a great job raising you ;^)
Our previous attorney had died and we needed to update our wills and trusts. The new attorney that did our wills was very serious about making sure that we did the Living Wills at the same time. A good thoughtful professional concerned about clients.
A suggestion for choosing decision makers
Several of our decision makers are close to us in age (my sister and brother). We each added 2 alternates that were 10-20 years younger than we are. This is particularly important for older people that they choose someone that is likely to outlive them.
Mine is scribbled on a piece of paper on the fridge… Wrote it out briefly (yes, and somewhat sillily) before a road trip in April… I do suppose it’s time to get it together seriously…
is a great start.
I did tho’ want something in writing before going on a road trip… Although my husband knows my wishes, I could picture my parents not listening to him…
helped me get her out of the hospital — where she was hopelessly frightened and confused — to home, where she recovered great! She had a broken hip, and the hospital would have kept her for three months in rehab.
Although she’s 85, I believe they would have pumped every nickle out of Medicare they could — and tortured her along the way.
I whipped out that health care power of attorney a couple of times, and they paid attention!
Yours is a great example of who’s in charge – you.
I hesitate to think that your mom’s caregivers were financially motivated – there really isn’t a whole lot of money to be made by keeping someone in the hospital longer than is needed, particularly with Medicare reimbursement rates.
But it’s certainly clear that being in that environment is not always positive for people like your mom. It’s unfamiliar and easily leads to fear and confusion. And while the “torture” is never intended, it’s also a reality that people do suffer needlessly in these situations (hospitalization).
I’m glad that you stood up for what was best for your mom. That’s what this discussion is all about, and what health care needs to be about.