Pinky Pie

The life panel & me

Posted on: September 11, 2009

Back in 1979, my mother told me she had appointed me and my brother, Andy, as her agents for healthcare decisions and had written a living will – a document that described her medical wishes should she be unable to speak for herself.

[Note to Andy: my name came first. :-)]

Mom’s living will, the earliest form of what we now call an Advance Directive, was a simple document that said, in part:

“If the situation should arise in which there is no reasonable expectation of my recovery from physical or mental disability, I request that I be allowed to die and not be kept alive by artificial means or “heroic measures.” I do not fear death itself as much as the indignities of deterioration, dependence and hopeless pain. I, therefore, ask that medication be mercifully administered to me to alleviate suffering even though this may hasten the moment of death.”

My response as a 26 year old?  I told her, “Ma, not even a Tylenol.”

A few months later she was in medical crisis and it was not clear at all whether she would survive. But she did and I didn’t have to invoke the Tylenol rule. In fact, she lived until late December 2005, dying in La Crosse with me by her side.

The truth is the immature me in 1979 did not want to talk about death – especially my mother’s. It seemed like something so terribly far away. People didn’t talk much about those things then; nor did they talk about cancer. (They either whispered the word or just called it “C.”)

This issue of not living indefinitely on machines was especially important to my mother over the years as she lived until 2001 in Missouri. The laws there did not allow parents of Nancy Cruzan to remove life supports from their daughter who was in a persistent vegetative state for seven years until the U.S. Supreme Court ordered a new review.

Mom did not want that to happen to her. Nor do I.

Frankly, I don’t want anyone wiping my tush indefinitely if I can’t eventually return to that fun activity myself. That measure of quality of life is very important to me. J

Within those 30 years since Mom signed her living will, Dick and I had to make the very difficult decision to remove life supports from our son Matt, who had leukemia. Nobody wants to make that decision, but Matt who was bright, funny and full of life, had no brain activity left. And his other systems were going to hell as well. He died 30 minutes after the ventilator was taken off, an indication that his continued life was not going to happen.

Now to 2009: I was diagnosed with breast cancer in July and not exactly at the earliest stage. But I’m told its still treatable with the kitchen sink about to be thrown at it – chemotherapy and radiation therapy.

In 2005, I created an advance directive, which describes my medical wishes if I cannot speak for myself. But it was one of those way off in a distance thing that mostly landed in my file drawer.

I was asked last week by Gundersen Lutheran in La Crosse if I would be willing to go through a process they have that is, in effect, a more advanced advance directive.  I’m a patient across town at Franciscan Skemp, but advance directives are a community effort, as illustrated in an article in the Washington Post,

The advance directive planning session is also what those who either do not understand or are maliciously looking for a way to gain power have mistakenly called a death panel. Death panels are a myth. Those who claim they would exist would rather have power than allowing folks the security of medical services that every other industrialized nation offers its citizens.

Instead of a death panel, and advance directive is a life panel – it is about making decisions for yourself about your quality of life and end of life should you be in that difficult situation and not able to speak up for yourself.

Our session, taped by the PBS “Now” program team (tentative view date October 9), was a 90 minutes spent with my husband – my healthcare power of attorney – and me. We talked about what each of us knew about my cancer and its treatment. And talked about what I might want – and he might want for himself – in different situations. It’s a thoughtful process with no rules or “correct answers.”

We went through a series of situations to discuss my wishes should I reach any of these points. In any case, no matter what I decided, the scenario includes the understanding that I would want to be comfortable no matter what. We discussed possible choices after I read and understood each scenario. I am not inserting my wishes here because there is still more to think about.

No one told me what I should decide or even pressured me to make decisions that day. That wasn’t the point. We talked about these issues and even joked at times about them. (It’s what I do.)

But my point is that advance directives promote healthy discussions. And I see sharing my views as a gift to my family. They will know how I feel should these circumstances arise  – 30 or 40 years from now (I hope). I want them to live with whatever decisions they make and get back to their lives. I don’t want anyone spending months or years camped around my body waiting for me to die because they are afraid to make a decision.

I want everyone to know that I appreciate life and the importance of a quality of life.

Our city of 52,000 had a lot to do with the provision in the health reform act calling for reimbursement of the time of healthcare providers who perform this important service. To call it a death panel is sick. To scare grandma that her plug is going to be pulled is wrong, bordering on evil.

Although I’m not a grandma – and I hope Maggie does not take this as pressure    😉 – I believe going through these conversations is very healthy. It’s not a way to pull my plug.

I know that because no one stamped “OK to kill her” on my forehead (I’ve looked in the mirror since then just to make sure.)

Please join me in fighting back against the myths and fear tactics. And do consider advance directives for yourself – no matter what your age – unless you want to risk someone wiping your tush forever more.


4 Responses to "The life panel & me"

Thank you for sharing this very important information about advanced directives! I’m looking forward to seeing the broadcast.

We are fortunate in La Crosse to have not only excellent health care available but thoughtful and proactive treatment planning available and made known to us by our healthcare providers.

Fear and misinformation is not the way to treat these very important issues. Indeed, if we pay to prolong someone’s life because they were never asked to share their preferences, shame on us!

Now I don’t think this is the only way to do an advanced directive, Yes, you can consult with religious leaders, lawyers or family and not use the medical community. But to deny payment for this very important process, because some of our citizens think of it as leading to “death panels” is wrong! I am very glad to get my medical care and have the option to make an advanced directive, which means make plans for the quality of my life, in La Crosse, WI.

Sue & Jill,

This issue is so important. Thank you for describing accurately the valuee of advance directives, and for confronting the fear-mongers with their use of words like”euthanasia” and “death panels” in their attempt to deny individual freedom.

Thank you for putting out this blog. I look forward to (we hope this happens as scheduled) seeing the interview on PBS’s Now program on October 9.

I am scheduled to help our Advance Directive planner talk with our family medicine residents on October 2nd– the situations you list should make a great teaching tool.



I hope many people read this particular entry on your blog. As you know I was faced with just such a decision 3 years ago when I brought my mother, who was suffering from emphysema, to the emergency room at Gundersen Lutheran. I was lucky enough to have a Mother like yours who made her wishes known and even luckier to have had her prepare her advance directive at Gundersen Lutheran so that it was on file there. Because she had prepared that very important document, it was easier for my sister’s and I to carry out her wishes. When you have to face that difficult time, and we all will go through it eventually, having plans made ahead of time is truly a gift.
I look forward to watching on October 9th.

Aunt Sue,

Thank you for writing about this. And for your whole blog, I’ve been catching up on your posts, and they are always moving, inspiring and make me feel something. Usually I get a laugh too, which I love.

Before our wedding our SF rabbi gave us a video to watch on this topic — from way back in the 90s – can you imagine! and a form to fill out. I encourage all couples and families, however old or young to talk about this – it meant so much to Marty and I. And… here is a where anyone can access this excellent tool for starting the conversation and communicating your wishes.

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