The Pre-End-of-Life Conversation

January 19, 2011

I read an article yesterday about a woman whose family had to determine her quality of life issues when she was unable to do so herself. She had gone through a surgery with a positive outcome. A few minutes later there was a request of the husband and daughter to insert a breathing tube to help her come out of the anesthesia. They agreed. Along the way she had a stroke, or some other episode, and lapsed into a coma.

The woman had documents in place – health directive (aka living will) and power of attorney – so the family could make the decision should she become incapacitated.  They understood she did not want extraordinary measures to prolong her life. She had penned her parameters on what was quality of life in her opinion. After ten days, they did make the difficult decision to take her off breathing support and she died.

When Dave had his stroke in 1998 we were very fortunate. He was awake when it occurred, so we were able to get immediate emergency support. But I was even more fortunate, because he was awake in the ER, and he was able to make decision about his own treatment. There were two protocols available to Dave at the time. One (use of the drug TPA) required that he be seen within four hours of the stroke, or, two, administer the standard protocol that was the default after four hours of the stroke onset. This question came up with only minutes to spare since he knew the time of the stroke and we were seeing the physician within that four hour window. Dave chose TPA. For me, the clincher was that if he took TPA, then he was not allowed by medical protocols to be given the standard treatment for 24 hours. It may or may not work. By happenstance, if he had the stroke a day earlier, then giving both treatments would have been allowed.

Dave had a rare spinal stroke rather than the more common brain stoke. However, he did have some paralysis when we arrived at the ER. This was one scary life and death moment! Dave made the decision to use TPA. I remember clearly being so thankful I didn’t have to decide for him. I’m not sure I could. The treatment was nothing short of miraculous. Almost immediately, Dave regained his movement. There seemed to be a complete reversal. Body parts moved. Smiles were everywhere. What a great decision. What a great drug! I left the hospital to attend to our daughter and other tasks while they checked him into his room.

When I returned a few hours later, damage to his nerves was evident. It is thought that he had another smaller stroke or occlusion. Because he chose the TPA protocol there was no treatment for this episode. Since that time, Dave has lived with a “hitch in his git-along” among other lasting physical conditions.

The facts surrounding the treatment options are one frustrating issue of medicine. But for now what looms bigger in our current journey are end-of-life care decisions, quality of life and health directives. How do you talk about them? How do you gather the family members for this conversation? Most people don’t want to talk about death at anytime, much less when there is a threat. When the topic is related to someone you love, then the conversation is hardly approachable. Shoot, even writing a last will and testament gives a lot of people the creeps! Yet, I know there is tremendous comfort when you can know what the person you love would do. My dad was able to make the decisions. He “put his life in order” his last few months and I have been forever grateful that at least these issues then and after he died were not of a single worry for me. Pre-planning is often recognized as a gift to the family by bereavement professionals.

There is a line you step across when one chooses to “go on” hospice. That is a decision to stop life prolonging treatment (not discontinue pain management). Until then, there is hope. There is treatment. There is opportunity. But there is also denial, (it seems so much easier) and that is what stands in the way of life affirming conversations. The fear that if we talk about or plan the negative outcome it somehow magically makes it our wish is just plain wrong!

I’m the first to understand I haven’t brought this conversation to light with Dave. A month ago I pulled the legal papers and read them again for the first time since writing them up years ago. Did I have them available?  Are they accurate?  Do they really tell me what to do when?  Will I need them? Then I tucked them back into the file cabinet.

In my ideal world I will be able to talk with Dave and all of his children sooner rather than later. Better yet, Dave will be able to talk with all his children. The best part of writing and reflecting is that I now have the tool for this conversation from my point of view. Writing makes me braver! No doubt there will be more on this subject to come.

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