It was early 1997 when he told me that he was going to make the call. It wasn’t what he said that was shocking to me, it was the resolve and certainty in his voice. At that time everyone knew Dr. Jack Kevorkian’s name and what it meant. I was suddenly facing the fact that my father wouldn’t be alive much longer.
My dad was diagnosed with multiple sclerosis 20 years earlier, shortly after my parents divorced. He was furiously independent, strong-willed and faced challenges head-on. He researched the disease, adjusted his diet and exercise, and got involved in the MS community, at one point serving as president of the Southeastern Colorado chapter of the MS Society.
Despite these efforts, the disease unleashed a torturous progression, slowly destroying his physical abilities. He started needing a cane to walk, which brought challenges for an owner of a small engineering firm that inspected construction sites. He refocused business toward serving as an expert witness in litigation, until the day he had to take a cab two blocks from where he parked because he couldn’t walk that far and he barely had the energy to testify.
The disease and the stigma that goes with it not only stole his livelihood, it robbed him of hobbies, spending time engaging with his children, and, perhaps worst of all for a former amateur race car driver, the ability to drive. Nearly every acquaintance in his life slipped away. Romantic partners moved on as his fate became apparent. Business associates he thought were close friends called less often. And his youngest children were growing up and moving away.
The summer before I started college, Dad insisted on going to Yellowstone with me, my younger sister Erika and our older half-sister Michelle, who was from upstate New York and I didn’t know about until I was 8. He wanted us to get to know each other and develop a relationship. After being homebound for some time, the travel took a toll on his body. We remember the trip mostly for the difficulties he had and Michelle’s struggles driving a full-size RV, but it did provide the foundation of a bond he hoped would form.
Two years after that trip, Erika left for college, too. By this time, four years before his death, he was alternating between a wheelchair and a hospital bed that had been moved into his living room. Visits from nurses and Meals On Wheels were his only regular in-person social interactions. I made the two-hour drive to visit regularly during college. After a post-college move to Boston, my visits became less frequent, and I could observe his noticeable physical decline over a period of months.
Periodically, bladder infections from a catheter would land him in the hospital. While he was able to return home every time, any attempt to recover proved futile when each infection stole ever more physical strength from him. He eventually became confined to that hospital bed and bedsores added to his suffering. As the infections piled up, antibiotics became less effective, leading to this prognosis from his doctor: Eventually, there will be an infection that medication won’t be able to treat.
It was difficult for me to come to terms with the impending phone call to Kevorkian. As I wrestled with this, I put myself in Dad’s shoes, or bed, as it were. There was no doubt he fully comprehended what he was contemplating. While his body was failing, his mind was as sharp as ever. I finally came to accept his decision, but only when I realized I couldn’t give him a reason that he should keep living.
There may have been brief moments of joy to break up the daily monotony as he suffered alone, but those came with the continued deterioration of his body and the wait for that eventual terminal infection. Left with only memories and a few remnants of the life he had built, all he yearned for was one last opportunity for control. If he couldn’t control his body, he at least wanted to control how long he would be in it.
That first phone call was made, followed by many more to formulate the logistics of getting a bedridden man from Colorado to Michigan, where Kevorkian lived. A close friend from his car-racing years set up his van to accommodate that hospital bed, and a longtime nurse accompanied the two of them. My siblings and I wanted to be there with him at the end, but he didn’t want us involved in the process, so that authorities could not connect us to the event and there would be no chance of us being charged with aiding in his death.
The year Dad made that call was the most active one for Kevorkian. After assisting 27 people from 1990 to 1995 and 19 in 1996, the official count peaked at 29 in 1997. Kevorkian regularly made the national news for his assisted deaths in Michigan. He evaded any legal ramifications by alleging only to provide the means, while the patient himself or herself actually administered the lethal injection. While he had some supporters, many disagreed with his activities. The lack of support extended to some of our family. My father told me and my sisters about what he was doing, but he didn’t tell his sister or parents since he was certain they would not support his decision and would legally intervene to stop him.
“My siblings and I wanted to be there with him at the end, but he didn’t want us involved in the process, so that authorities could not connect us to the event and there would be no chance of us being charged with aiding in his death.”
Dad decided to die on Aug. 29, his 56th birthday. The idea came from “The Shootist,” John Wayne’s last movie, in which he played a notorious gunman diagnosed with cancer. Given weeks to live, Wayne’s character arranged a final, fatal shootout on his birthday.
Dad and I talked every day leading up to his trip. The final phone conversation contained a bizarre range of emotions, from relief that his suffering was about to end to the agony of saying goodbye to my Dad forever. After ending that last call, the waiting began.
Coincidentally, on the same day that Dad’s life had been arranged to end, I embarked on a road trip that spanned Labor Day weekend. I was to be informed by a message left on my home answering machine when he had died. I finally received the voicemail early the next day. He had indeed passed in the waning hours before midnight on his birthday. Unfortunately, before the phone tree was activated to inform our family the next day, my grandfather heard about Dad’s death on a radio news report around 1 a.m. He wondered if he imagined his son’s name, but he knew deep down this was something my father could do.
The next few days were a whirlwind. Dad’s name and the image of the motel where his death took place were repeatedly on the Headline News channel for the next 24 hours, until Princess Diana’s death replaced it in the news cycle. There were arguments over the funeral service his parents wanted, even though my father had wanted to be cremated without a service and his ashes spread at his favorite race track. Someone reminded me that funerals are for the living and I knew I wasn’t going to talk them out of it anyway, so I dropped any resistance but did not attend. My grieving process had begun months earlier and I got to say goodbye directly to my Dad, so I didn’t feel the need to go to the funeral.
I also didn’t want to keep answering all of their questions, the biggest of which was why no one told the rest of the family. It was a rift that remained until my grandparents passed away a decade later. They couldn’t understand why he would do this. I tried to explain the real question was, why wouldn’t he? What was left to live for? More bedsores? The final infection? Or, as the doctor in “The Shootist” put it to John Wayne: the pain, the screaming, the prayers to just lose consciousness already? By taking control of his final days, he was able to tie up all the loose ends and say everything he wanted to those he could trust to accept his decision. Although he was able to say goodbye to many, he couldn’t tell some of his closest family, leaving a void for them that could never be filled.
Dad was right to keep us far away from Michigan. My father’s death was only the second acknowledged by Kevorkian after a cease-and-desist order issued by the state. Local authorities continued contacting us, speculating that my father would have been too weak from the travel to administer the injection. It didn’t matter to me ― either way, it was what he wanted. The continued inquiries only extended the difficultly of dealing with his passing. They finally stopped a year later when Kevorkian allowed “60 Minutes” to broadcast video of him administering a lethal injection to Thomas Youk, for which Kevorkian was convicted of second-degree murder and imprisoned for eight years.
Over nearly a decade, Jack Kevorkian is officially confirmed to have assisted in nearly 100 deaths, and estimates put the total over 130. Kevorkian was openly defiant toward the authorities and may not have been the ideal spokesperson for physician-assisted dying. But he forced this issue into the public consciousness. It’s not a coincidence that, according to Google, the use of the words “euthanasia” and “assisted suicide” peaked in 1999, one year after the last assisted death that Kevorkian performed.
The United States’ first “Death with Dignity” statute passed in Oregon in 1994, and use of the Oregon law has increased almost every year. In 2019, 188 people, mostly seniors suffering from cancer, died in Oregon by ingesting prescribed medication, accounting for just over 0.5% of deaths in the state. Laws in seven other states and D.C. have been modeled after Oregon’s, most passing within the last five years, and other states are considering similar legislation. Generally, they allow mentally competent terminally ill adults, usually defined as having six months or less to live, to voluntarily receive medication to hasten their death.
Concerns have been raised about these laws causing terminally ill individuals to feel devalued or pressured to the point they are not in a position to decide on their own quality of life. Social stigma should not prevent anyone from pursuing life who can, at a level that they can accept. There are also conditions in place to prevent coercion or influence by medical professionals or the families of those who are terminally ill. Two physicians must confirm the diagnosis, prognosis and mental competence, and there are multiple waiting periods where the patient’s request must be reconfirmed. Independent studies have evaluated and confirmed these laws are effective and not abused. According to data published by these states available at deathwithdignity.org, from 1997 through 2018, just over 4,000 Americans have hastened their death using these laws.
However, even where legally entitled to receive the information and assistance with exercising this right, some hospitals forbid physicians from doing so. I find it ironic that humans are comfortable determining when dogs, cats, horses and other animals should have a “humane” death not of their choosing, but terminally ill humans of sound mind should die “naturally” like animals.
Opinions on physician-assisted dying continue to evolve toward acceptance along with the expansion of states permitting it. According to a 2018 Gallup poll, over 70% favor allowing doctors to legally end a patient’s life painlessly if requested. The 2018 Medscape Ethics Report, a survey of over 5,000 U.S. physicians, found that 58% think physician-assisted dying should be permitted for terminally ill patients, up from 46% in 2010. And 27% responded “yes,” with another 28% answering “it depends,” when asked if physician-assisted dying should be legal for patients with irremediable suffering, even if the disease isn’t imminently terminal.
Yet, most of us are not adequately prepared for our eventual demise. A survey published in 2017 by the Kaiser Family Foundation found 94% of respondents would be comfortable having end-of-life discussions with their spouse or partner, but only 56% have actually had them and only 27% have documented their wishes. The survey found 87% think patients and their families should have the greatest say in treatments for patients near the end of their life. However, the medical community will likely default to doing everything possible to keep a patient alive. Without medical directives to speak for you if you can’t, do you want the burden of that decision to be placed on your family?
Regardless of your position on assisted dying, we should all have a say in our health care at the end of our lives. If you’ve avoided this, here are some resources to get you started. Free advance directive documents that provide your health care instructions are at caringinfo.org and theconversationproject.org to help people discuss their wishes for end-of-life care.
While my Dad had been given a life sentence with MS, he wasn’t terminally ill and wouldn’t have qualified for a legal physician-assisted death under any current laws. But I’m so thankful that he was able to decide when to die. It was the right choice for him and avoided extending his suffering. But it would have been so much better for our family to have done this out in the open and for him to have loved ones around him when he passed.
This experience made me truly reflect on what I want at the end of my life, and I hope that sharing his story will encourage you to consider what you would want for yourself. You may not think you’d ever be in a condition where you no longer have the will to live and want to die. But if you were suffering and wanted it to end, is there a worse horror than not being able to?
Graham Summerlee was born and raised in Colorado and is a Fellow of the Society of Actuaries. He currently lives in Greensboro, North Carolina, with his wife and their two children.
Thomas E. Summerlee (Aug. 29, 1941 — Aug. 29, 1997) was born in Dunkirk, New York, earned a Master’s Degree from Clarkson College of Technology and resided in Colorado for 26 years prior to his death. His children, Michelle, Graham and Erika, wish their dad a happy birthday.
The author donated their proceeds from this story to the Final Exit Network.
Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch!