I learned today that Dr. Jack Kevorkian died yesterday morning at William Beaumont Hospital in Royal Oak, MI, the town and hospital of my own birth. There is a bit of an emotional charge accompanying the name “Kevorkian” for anyone over the age of 30 who read a paper, listened to a radio or watched television between 1990 and 2000. Regardless of how we individually feel about physician-assisted- suicide we cannot deny how his presence raised consciousness around end of life decisions and hospice care. In the very least he served as a grinding stone for our nation to sharpen its medical ethics policy blades on, a debate which is still unfolding. Through the story and events of his crime we can also consider, vicariously for ourselves, what we may or may not have done or do in the same position as his diverse group of 100+ patients.
Jack Kevorkian believed whole-heartedly it seemed in a just, dignified, non-judgmental and painless out for those tormented at the end of life. Or so I thought until someone unexpected challenged my premature and comfortable position on the matter of euthanasia. I’ll call him Gary. In 1996 there was a forensic chemist called to the scene of Dr. Kevorkian’s first client. Gary was one of the first to arrive in the woods and investigate the crime scene. As he approached the dilapidated ’68 VW van tucked in Groveland Oaks County Park he remembers being struck by the irony of Dr. Kevorkian’s dignity proclamation. When he attempted to open the door of the van with a rusted out handle, the entire door came unhinged and fell to the ground. The vans structure was as fragile as our emotional states around the topic of death, dying and assisted suicide and it hardly felt like a dignified environment in which to die.
Gary was no ordinary scientist and this was no ordinary case. At the time of the trial, in which he was called as an expert witness, his mother was living with moderate Alzheimer’s disease. You may recall the very first Kevorkian client was a woman. Her name was Janet Adkins, she was 54 years old and she had been diagnosed with early onset Alzheimer’s disease. Janet was in the early stages of the disease, significantly depressed, thoroughly fearful and desperate to end a life she was certain was going to end in despair for everyone around her, including herself. Gary’s mother was farther along in the disease process than Janet Adkins at the time and he struggled with Janet’s reasoning and Dr. Kevorkian’s willingness to help her. Gary is a religious man, but it was not the sole reason for his objection. He called to mind his relationship with his mother, his children’s relationships with his mother and all of the occasions, current and happy occasions where they gathered and spent time together. His mother was changing and declining in many ways, but their love was not. If anything, it deepened.
Gary’s mother died from Alzheimer’s disease, but he is not certain she would have wanted to end her life sooner. As for him, he disagrees with Janet and with Dr. Kevorkian, now more fiercely than ever. Gary learned two years ago he has a pair of ApoE4 genes (apolipoprotein E), the genetic marker for Alzheimer’s disease carrying a high risk of developing late-onset AD. He currently has what neurologists now refer to as Mild Cognitive Impairment (MCI). Gary struggles with short-term memory loss and complex tasks, but otherwise feels connected to his life and family in the way he always has. Gary is not making decisions about his life based on ideas about the future, he lives it as it comes and places the rest, he says, in Gods hands. He is a valued Wisdom Keeper and attends a weekly support and education group for other’s with a similar diagnosis. Gary feels strongly about “living life, as best as you can, with the cards you are dealt.” While he does not anticipate any physical pain he shrugs his shoulder’s when he considers the cognitive changes which may change his life irrevocably and render him dependent on his family. He is fully aware of the fear this can generate, but he consciously brings his attention back to what is happening in his life now. “We are of like mind here, in this group,” he says frequently with intentional pun. He wonders what Janet may have decided if she’d had a group of peers and another perspective available to her at the time. Me too.
I am reluctant to proclaim with any certainty for myself or to suggest for anyone other than myself when pain is enough to end a life. I can say, for myself, I would never do this. Of course not. Right now I’m sitting comfortably in my sunshine infused study with the sound of one daughter singing to herself, the dog panting happily at my feet, and my other daughter playing the piano in another room. In this moment, life is idyllic. But this life is a series of moments really, pearls on a multidimensional network of strings, like Indra’s net. I only know about now, and only for myself, the rest has already happened or is simply a projected fantasy of the future or well planned or unplanned guesswork.
I remember vividly a conversation I had with my father shortly before he died. He had two hospitalizations for extreme pain caused by cancerous bone mets before he checked himself into a hospice residence in early July of 2007. After his second hospitalization he shared with me, gently and clearly, “If there had been an ‘end it’ button Laura“, like the buzzers used in some board games “I would have pushed it. It was that bad kiddo.” He said it surprised him, this certainty, this knowing he was done, but then again, he also said, it was not a matter of if at that point, but when he was headed off planet. On my parents 40th wedding anniversary and just a few short weeks after a very large and happy celebration commemorating this special event, my father said “stop” on his own terms. It happened naturally in an super-human kind of way, I can only liken it to a birth. The nurses prepared for his stay in hospice in terms of weeks. He patiently sat through their questioning and paperwork all the while knowing he was aiming for a swift exit. He kept this to himself. My father was collected, yet open, and with focus, precision and patience he got to work on the labor of leaving. Like a meditation of determination and complete acceptance he died peacefully on an otherwise normal and hot summer afternoon less than 48 hours from the time he had checked in. There is more to the story, of course, which will likely come up in another blog.
My father and men like Gary have a great deal to teach us about what will inevitably be our own story, someday, hopefully not too soon. I heard an anthropologist say the following words and wrote them down in my notebook recently:
“We all want to die young, as late as possible.”
I thought of this yesterday as I watched my mother and daughter at the Great Lakes National cemetary in Holly, MI. We met there before lunchtime to place flowers at my father’s grave. We had intended to go last weekend over Memorial Day but my mother had a nasty cold, much to her disappointment. She was rewarded with a sunny and breezy 72° day instead of last weekend’s or today’s scorching 90°. We were welcomed by the sound of a practicing bag piper in the distance, the low rumble of Harley’s and the chatter of nesting birds in the trees by Fagan Lake. It is a gorgeous location and one that my father helped scout out and purchase through the Michigan National Guard for the National Cemetary Administration. Ironically, his urn became one of its first residents. We placed stones on the ledge and left daisies and lilacs at the base of the columbarium. Before heading off to the aptly named “Bittersweet Cafe“ in town we watched several Patriot Guard’s roll out and under the Boulevard of Flags and a lone bagpiper walk towards the lake playing a mournful tune we did not recognize. Regardless of the circumstances or the means, cause and timing of death, we miss the ones we love when they’re gone. It is the one thing, and maybe the only thing, we all agree on with mutual respect, acceptance and compassion.