Editor’s note: Brenda Denzler’s 2019 post about advance directives (reprinted below) came to mind when I read “What’s Wrong with Advance Directives?” a JAMA Viewpoint published earlier this month. Authors of the viewpoint, including Dr. Diane E. Meier, director of the Center to Advance Palliative Care, cite research showing that advance care planning does not deliver intended results. Indeed, they find that focusing time and attention on ACP “detracts from other initiatives.” They recommend shifting — not abandoning — planning conversations from hypothetical scenarios about what may occur in the future to real-time shared decision-making and appointment of trusted healthcare proxies. Noting that belief in ACP was based on reasonable, logical assumptions, they see this shift as part of the ongoing process changing practice based on new evidence. It also renews my appreciation of Brenda’s clear-eyed, experience-based observation that “…you often don’t know what you want until you’re smack in the middle of a situation. You may think you know what you would want or do…but you don’t.”
Last night I was reading through my personal journal from 2010 and I found a note about my friend Kate. The issue I was consumed with in those days was how women with metastatic breast cancer were treated. The standard approach was (and still is) to treat them palliatively—in other words, to keep them alive and comfortable for as long as possible, but not to cure them. I wanted more. I wanted to fight for that coveted NED (no evidence of disease, which to me equaled cure), not just palliative treatment. Kate had been diagnosed with mets [metastases] right out of the starting gate in 2009. She knew that eventually she was going to die from her disease and that all of her treatments were merely time-buying strategies. She didn’t see any point in fighting for something so very unlikely as a cure.
What I had forgotten, and was reminded of last night, was that Kate had a plan to take her own life when her disease became so advanced that death was imminent. We had talked about it several times—her stash of pills, her criteria for just when she would do it. She wanted to go out on her own terms. I respected her right to make that decision. In fact, I admired her courage.
One of our IBC sisters in Australia had recently done exactly that. Though her quality of life had become negligible and the pain from the cancer was almost incapacitating, she hung on until her upcoming birthday, planning a big party to celebrate the event. It was, we were told, a real blow-out bash—one for the memory books. Then she went home and, three days later, in the company of her loving partner, quietly swallowed a lethal dose of pills.
Kate didn’t die until 2017. It’s been almost two years, now. When she did, it was with the skin all over her chest broken open with painfully ulcerating metastases and a tumor on the side of her neck that grew so large it was impossible for her to hold her head straight without a great deal of pain and difficulty. (Cancer is not pretty.) She received increasing amounts of medication for the pain and became, as a result, increasingly foggy and out of it. After a couple of months of this she was, thankfully, set free.
But it was not by her own hand, as she had planned. Somewhere along the way, her plans had changed. The drive to live is strong, after all, even in the face of knowledge that you are actively dying. Or maybe her plans became slowly eroded by one small decision after another until, ultimately, they had become pointless—or impossible to fulfill. I still respect her decision(s).I think this happens to all of us, all the time.
I had always said, and firmly believed, that if I ever got cancer, I would never resort to chemotherapy, radiation and surgery to deal with it. Like Kate with her pills, I had a stash of alternative medical literature explaining what I could do, instead, and I knew where to go to learn more. Yet when my back was against the wall and I knew I had a very aggressive form of cancer that had been found “early” at Stage IIIB, all my advance planning about what I would do went out the window. I chose differently. It caused me a lot of anguish, mind you—but I chose differently.
Not Knowing Until You Know
Fact is, you often don’t know what you want until you’re smack in the middle of a situation. You may think you know what you would want or do…but you don’t.
In 1978 my husband and I were living in a hovel (quite literally). A couple of blocks away they were building a big, sprawling apartment complex. We marveled at how quickly it was being put up—“thrown up” would be more like it! One day there was nothing but concrete slab everywhere. Twenty-four hours later there was a veritable forest of 2×4 studs and joists reaching two stories into the air. We laughed at the poor, unsuspecting people who would wind up living in that flimsy complex. Turns out, our second son was born at home there about a year later.
Like I said, you never know for sure what you’re going to want or need to do until you’re actually in the situation.
As a part of trying to manage the conundrum of how to get my oncologists on board with my treatment preferences for metastatic disease, one of my BC sisters with mets encouraged me to make an advance directive on the subject. With her help, I concocted a beautiful, concise statement of my decisions on the matter, with a word or two about my reasons for making those choices. To make it more palatable to my oncologists, I submitted it with two other documents: my first-ever set of Advance Care Directives (covering what kind of care I wanted at the end of life) and a properly executed Health Care Power of Attorney.
The truth of the matter is, though, that I no longer know. Oh sure. When I thrust those papers into my oncologists’ hands, I was pretty darned certain I knew what I wanted. Though experiences during my treatment had made me very uncertain as to whether anything in those three documents would really be honored, I felt I still had to try to make my voice heard.
Today, I’m considerably more ambivalent about what “my voice” is. I know more about the nature of cancer than I did in 2010, and more about cancer treatments. I’ve seen how what we know about cancer and what we can do about it are changing surprisingly quickly. I’ve seen a lot of exceptions to the “rules of engagement with cancer” as written by the mainstream medical establishment or by the alternative medicine crowd. I’ve watched close friends and more distant ones die and seen how the best-laid plans and loftiest intentions so easily evaporate in the white-hot heat of a medical crisis.
Advance Directives? Here they are: I want to live and be able to find pleasure in the living. I want to die with some shred of dignity. And in between, I want to be able to change my mind again and again about just what those two things might mean.
This essays first published in the April issue of Chatham County Line (p4) and is reprinted here with permission. I first saw it mentioned in an online forum sponsored by the Society for Participatory.