Oliver: Life-and-death health care decisions are best not made on the fly

As hard as I try, I’ve learned that I just can’t be prepared for everything that comes up as a caregiver.

I was reminded of this last week, when Tony had to make an unexpected trip to the hospital.

Although Tony and I had talked many times about what his wishes are in the event of an emergency, those discussions took place years ago. Ten years after his Alzheimer’s disease diagnosis, I have a broad idea but hadn’t given the specifics much thought in a while.

I had been in this situation before. When my mother, who also had dementia, came to live with me, we discussed what I should do in the event of several scenarios.

It’s a sobering thing to be the one who must make life-and-death decisions for one’s loved ones. However, I always looked at it as just doing what my mother wanted me to do.

Of course, when the time came to decide what to do when she broke her thigh bone, I recognized that her very life was in my hands. She already was in hospice, and to do the surgery to fix her leg would have required surgery and a rehabilitation regimen that she could not have handled.

That the ER physician didn’t understand that I was on the same page with him about her inability to handle the surgery didn’t help matters. He was arguing with me while I was agreeing with him.

In the end, she died about a week after her fall. It was a heartbreaking decision, but it was one that I know she would have wanted me to make.

With Tony, we had never gotten close to those decisions. In hindsight, this trip to the hospital didn’t really require them, either. But at the beginning of the ordeal, I really didn’t understand that.

Tony had fallen in the bathroom, and it appeared that it had something to do with his heart. His Alzheimer’s drugs slow his heartbeat to a level that would scare most people. Still, he has been handling that well for almost 10 years. Imagine my surprise when I found myself in the ER with him.

Tony has always said that he wanted the DNR designation – do not resuscitate. He didn’t want to be kept alive in a vegetative state and wanted me to let him go when appropriate.

What I didn’t fully understand was the many different scenarios that the DNR status covers.

That became painfully apparent during a conversation that I had with a hospitalist. I didn’t understand what she was asking me, and somehow, I agreed to remove his DNR status. To say that I was upset and confused would be an understatement.

I didn’t get much sleep that night as I pondered all the questions about Tony’s care for which I didn’t have good answers. What I did know is that this new situation was not what Tony wanted.

Happily, two other doctors came into Tony’s room the next day to go over everything with me again. Apparently, the fact that I was upset and confused had gotten around.

What I learned about was something called a POLST form that is valid in Illinois, and I now have one on file at the hospital, as well as a copy to store with Tony’s important papers.

POLST stands for “Practitioner Orders for Life-Sustaining Treatment.” What it does is allow a patient – and, in my case, a caregiver for someone with dementia – to get those wishes down in writing in the event of a serious medical emergency or at the end of life.

This isn’t something that is required. But in Illinois, health care providers by law must do what a POLST form says. Without a POLST form, the emergency team will try to keep you or the person you care for alive with all available treatments.

The decisions that can be found on the form include things like whether you would want CPR if your heart and breathing stopped. Would you want to be put on a ventilator to help you breathe if you could not do so on your own? Would you want to be fed through a tube if you could no longer eat?

Clearly, these are not decisions you would want to be making on the fly. And caregivers need to have a clear understanding of what their person would want to do before an emergency arises.

More information on the POLST form can be found here.

I thought I was prepared because I had had conversations with Tony in the past. Now, with that POLST form in hand, I know I have a better chance of following Tony’s wishes in the future.

• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.