Ellen Goodman is one of my favorite essayists and authors. My first exposure to her writing was an essay entitled “The Company Man.” Even though I was just 16 years old when I read it in my AP English class, it had a profound impact on me. I still often think of it when the days and nights of life get long, hectic, and overwhelming and it helps me to step back and do, if nothing else, a little reset to get my priorities realigned.
Therefore, when I read her post on the living-or-dying decision-making (and second-guessing) she had to do for her mom when Alzheimer’s Disease had forced Ellen to be the decision-maker, I found it very interesting.
And familiar. Because even if you’ve had “the conversation” many, many times, I think second-guessing, especially toward the end of life when push comes to shove, is inevitable.
Mama and I had talked in-depth about her dying wishes for years and we had the documents and the paperwork done well in advance of her dementias, Alzheimer’s Disease, and congestive heart failure diagnoses.
She had a living will with no extraordinary measures, as I do. And she decided on a DNR after Daddy died without one and she saw first-hand the effects of futile life support that he had to go through in that last hour of his life because he didn’t have a DNR.
Even though Mama was a medical professional, as was Daddy, I believe the impact of seeing her soul mate and best friend go through being kept artificially alive even for that short period of time was profound and life-altering for her.
We talked about it a lot right after Daddy died, and I told her I had a DNR and had gotten it in my early 20’s and I told her why I had (and still have) it. It made sense to her and we had her doctor draw it up and certify it.
As Mama’s heart health declined, we continued to have conversations about what she wanted and didn’t want as far as quality of life versus quantity of life.
We were so much alike in our very strong views that quality of life was what was important and not quantity (and this really is the core issue that must be addressed and resolved as part of the dying wishes conversation) that we never disagreed on care, treatment, and outcomes.
But it was because we had these heart-to-heart talks a lot in the last years of Mama’s life and we openly and frankly discussed death as the inevitable outcome and how Mama wanted that to be, as much as was within her control.
When Mama told me she didn’t want to go to the hospital anymore for treatment for her congestive heart failure, I honored that wish, despite the frantic response about liability from the nurse on the phone when I called to have Mama’s doctor give us a prescription for the medicine (Lasix and potassium) and a schedule so that I could treat Mama for it at home.
The doctor ended up calling me himself and he got Mama in the next day to the office and gave me the prescriptions and schedule to do at home with a follow-up visit within the week with him. And we continued to do this at home until Mama’s death. That’s what she wanted and I was determined to make sure that her dying wishes were honored.
The issue came up again three months later when, on her birthday, Mama started throwing up in the afternoon and had chills and sweating. I wasn’t sure whether the symptoms were heart-related or not, so I took Mama to the ER. She had a gall bladder infection and after we were transferred to a bigger hospital early the next morning, a gastrointestinal surgeon came in and tried to talk us into putting Mama under general anesthesia to remove her gall bladder.
I refused that because I knew with Mama’s weakened heart, she wouldn’t survive it and told him we needed a Plan B. He reluctantly said they could put a drain in with local anesthesia to drain the infection out, but that reinfection was likely within a year. I realized even then that Mama’s health was such that it was unlikely that she would live long enough for a reinfection to occur, so after she and I discussed it, we agreed to the drain, which was successful in removing the infection.
It wasn’t until the very end of Mama’s life that I did any second-guessing. I knew logically and intellectually what she wanted and I was committed to honoring that. And I did.
But most of my second-guessing came in the form of wanting to be sure that I wasn’t overreacting as death approached and that once it was clear that Mama was in the dying process, I wanted to be sure she wasn’t suffering and I didn’t know how to gauge that (she wasn’t and I know that now, but it was paramount on my mind then).
The reality is that, with appropriate comfort care during the dying process, it’s harder to watch someone die than it is for them to actually die. Because we watch our loved ones die with all our senses intact, all our systemic functions intact, and all our alertness intact and it’s almost impossible to not project our intact selves into the process.
And that is why having the dying wishes conversation with our loved ones long before we have to honor it is so important. Most people seem to be very uncomfortable with this conversation – and the subsequent similar conversations that will and should follow it.
But let me ask you a question that shows why we need to get comfortable with it.
What if something with a life-ending outcome looming happened to you today and you’d never discussed and formalized your dying wishes with your loved ones and they were suddenly thrust into the position of having to decide whether to postpone the inevitable or let you go with no intervention in God’s timing?
Would you want your loved ones to be in that position? Would you want to be in that position? Think about it. And have the conversation. As soon as possible.