One Step Forward

My father lost his battle with congestive heart failure a year ago January 5. For the past year, I've gone over his last few months in my mind, thinking over the details of each care plan. With agonizing precision, I inspect every step, every shot, pill, ministration, looking for evidence that his passing went the way he wanted. I am sure it did, because we talked about it long before it became an issue. As a result, the battle was really more a milling about, waiting for the engine to slowly sputter out.

It was not, however, the end he would have chosen for himself. Like most of us, Daddy would rather have gone to sleep one night and simply not woken up the next morning. Instead, he made do for more than 3 years after a CABG and small stroke took his independence. A gifted surgeon, retirement without being able to do for himself left Dad cranky, anxious and depressed. When my mom suffered a dissecting AAA in early 2006, he lost what was left of his spirit as well.

He was alive, but he had no quality of life. He was marking time, simply going through the motions. He took meds for symptom management, even while his longtime CHF got worse. He was ready to go. Unfortunately, when faced with that momentous decision, we weren't ready to let him. I fussed over him like he had years to go, jollied him into going into a rehab facility with my mom "to get his strength back," and got him admitted to the hospital in early December to pump him full of fluids after he stopped eating or drinking. It wasn't until he finally moved to my home with my mom and we got involved with hospice care that I fully understood what my job was to be.

Quality of life. I didn't know what that really meant until I stopped to consider the quality of his death, what it would be like for him to have to fight us for a natural end.

In her Dec. 4 entry, Pat Carroll, MS, RN, BC, CEN, RRT, talked about quality of life in her blog, Nurses' Wisdom From Your Virtual Break Room. Titled 21st Century Healthcare: Are We Making Progress?, she shared the story of her father, of discussing with him what quality of life meant and listening to his specific desires. It's tough to hear - and understand - that the parent you love has made a decision, and you have to support it. Even if you agree with it, which I did, the result will change your life forever.

Are we making progress in the art and science of saying good-bye? As my father's last caregiver, it was my responsibility to alleviate his suffering, provide whatever he needed and champion his cause. I think I did that part fairly well, but I have to admit, I've been haunted for the past year by thoughts that I didn't quite do enough.

It all comes back to quality of life. Like Pat's dad, mine was miserable. He had no hope of any recovery, nor did he want any. He had made his peace with himself (the biggest hurdle) and was ready. Then the moment came - and it was simply a moment, hovering over us like a balloon floating into the sun - and went and he with it. The poor quality of life gave itself to a higher quality of death. I would call that progress by any measure.