Friday, October 1, 2010

When we choose to go easy into the night--or not

When my mother's autonomic system began to fail from advanced Alzheimer's in 1978, she was hospitalized, and I was given a form to fill out. It asked, specifically, if I would approve any of the listed "extraordinary measures" to save her life.

I remember being so very thankful Mother and I had discussed this in depth when she was still reasoning and lucid. It was hard to check "no", but I did so. (By this time, I was also her legal guardian, but still.)

Today, the patient must have a signed, notarized document on file, as I understand it. When my friend recently died of lung cancer, things got dicey when her lungs started failing and no DNR was in the orders. She was one day away from being put on a ventilator when a 24-hour hospice service finally accepted her and took her home. She died within 48 hours. If she had been on a ventilator, it would have been the end of any real life as she knew it, but she might have lasted days or even weeks at great expense. Nobody wanted that. The staff was upset. The family was upset. My friend would have been upset, but her oxygen level by then was so low she slept most of the time.

She died easily, family with her, in her own bedoom, nurse attending.

That's an institutional DNR. It seems such a simple thing, but in an emergency, it is hard to know when to utilize it.

Another friend's mother has just died. She was 88. She had never had surgery. She never took any medications, although she knew her blood pressure was high. She donated her body to the medical school, an aging, unsullied, hopefully interesting specimen for some aspiring doctor to learn from. She was so adamant about no extreme measures that she had a DNR document posted at the house. She was up for a stroke, and she knew it.

And she had it. When a daughter found her, it had probably been 12-18 hours since the first massive seizure. The ambulance transported only to the hospital. And there, not knowing the severity, not knowing enough about what was going on, her family agreed to treatment. And she survived. Half her brain gone, part of the other gone, but she survived. She shouldn't have been able to move her arm, and possibly not been able to talk, but she could. Memory and reasoning nowhere near who she had been, but there. She was in the hospital awhile. Assuming she was going to survive another few months or even a year, family submitted to having a feeding tube put in, as partial paralysis made it hard for her to swallow. The doctor expected this to rectify in a few weeks. But this extraordinary woman was apparently lucid enough, herself enough, to make her wishes known. Her three children conferred,and the tube was removed. They all understood the consequences. They brought her home on hospice. They rearranged their schedules, because hospice for them, until the last few days, involved a daily visit only. It was scary for the family, these responsible, loving, middle-aged children who nonetheless had no knowledge of caring for a dying mother. They learned. They turned her, talked with her, bathed her, changed her, yes, that, too.

My friend said her mother would have been appalled at the cost of the medical treatment. She commented herself that with the Baby Boomers aging, our nation cannot survive the cost to Medicare if everyone chooses to go this way. Her mother, she said, would have said the money would better have been spent on well baby visits, vaccinations, on those who can recover from their body's blows, on those who have others to care for.

I know this is a growing dilemma. When I went in for my physical, I asked my doctor about an out-of-hospital DNR form. She was startled and said she didn't have them in her office but she supposed I could get one online. But, she asked, what if resuscitation could bring me back to a productive life? It often does.

My medical DNR, dutifully notarized, has been in the folder with my will, my power of attorney, my medical power of attorney and my living will, for five years, at least. I don't know if a conditional DNR is possible. I guess I will have to check back with my attorney.

I heard on the news last week that it has been 50 years since CPR was introduced to the world. This procedure, in so much time, has undoubtedly saved thousands, maybe millions, of lives. But 50 years ago, CPR could carry a patient only so far. The medical support available today didn't exist.

I see older people all the time who want to survive at any cost, literally and figuratively. I see the poor souls like my mother who had no choice, but have been treated longterm with tenderness and care.

I have seen grieving parents let their dying child go peacefully. Most of us know at least one person whose family just couldn't let go until they went through hell.

CPR. Such a simple thing. Even I have taken lessons. Hard to imagine Before.
But After involves complications that those who developed CPR never anticipated.

Before, they really couldn't.


Fay Akers said...

I think I need to get one of those made up for my father. He doesn't even want to go into a nursing home if it had to be. Thanks for being so honest.

clairz said...

Charlotte, this is such a carefully thought out and thought-provoking piece. I wish it could reach a larger audience because I am sure it would start a lot of discussions and really get people--especially those like me, who have been reluctant to deal with this issue--to start figuring out how they want to be treated, and not treated, for that matter.

Thank you for this post. It really is a great one.

charlotte g said...

Fay, yes you do. And your dad also needs to give you a power of attorney, if he will. My late MIL insisted I get one for Mom, but I was in my 20s and resistent. As a result, I ended up with guardianship, which is a pain in the neck, more expensive, and requires a very picky yearly accounting of every dime spent in court.
There is trust involved here. If your dad is satisfied you will follow his wishes as far as is humanly possible, it is easy. Families CAN and HAVE withheld DNR documents from doctors when they can't let go. He might want to have one in his primary physician's file, which is still no guarantee, since it can be overlooked. If it's there, though, it can be found.

I do trust my sons. Honesty is a big deal in our family. Come to think of it, though, I may place a copy with my gp and tell my kids so they can tell the doctor in an emergency. My rearending on May 12 came out well. Not a twinge. It could have gone badly, and if my sons could tell ER I had this on file, it could make a difference.

Clair, I can't believe we haven't met fleshtime, because you have become a dear friend. Thank you for your comment. I have thought about this for awhile. There have been 2-3 other related cases I didn't mention that have fed this blog. Sometimes when I blog, I feel I twaddle, hopefully peacefully. Sometimes I am dissatisfied. But this is pretty close to what I meant to say. I do think it is important.

I am in the "sandwich generation". I used to have pity parties that my dad died when I was 19 and I placed Mother in a nursing home when I was 23. But I got through it early, when my vigor was strong and my practicality at its peak. My children were young. In many ways, I have had it easier.
As an old friend used to say, "If your and my troubles were hanging on the (clothes)line, you would pick yours, and I would pick mine."
In my mind, that really is true.

OmaLindasOldeBaggsandStuftShirts said...

Fantastic post. I agree that this needs to get to a larger audience. I need to make my wishes known to my daughter and make sure that I have the necessary paperwork in place now. And that's exactly what I will do right now. Thanks again, Linda