Alison Clay Duboff shared her story in February of 2023.
In 2021, Alison witnessed her husband’s mood shift from depressed to jubilant in the moment he learned he had the option of medical aid in dying in their home state of California. Just weeks before, Ken had been diagnosed with AL amyloidosis, a rare disease that had effectively left him in advanced congestive heart failure.
Ken’s health challenges started 15 months prior, following a trip he and Alison spent on the Peruvian Amazon. With it being the start of the global pandemic, it was a challenge navigating the healthcare system to identify the root of his symptoms. Eventually, Ken's physician detected something unusual in his bloodwork, prompting a bone marrow biopsy. The results revealed Ken had Waldenstrom’s syndrome, a rare cancer that affects your blood cells. Although the cancer was indolent, Ken's health continued to deteriorate, and his symptoms did not fully align with Waldenstrom’s.
Alison and Ken continued to search for answers, and in the spring of 2021 they connected with a hematologist at the Mayo Clinic in Rochester, Minnesota. They never expected that after 22 years filled with exciting travel and culinary explorations that Minnesota would be their last trip together.
Within 12 hours of seeing the Mayo Clinic specialist, they had the devastating answer to a question they had been asking since March of 2020. The physician let them know that Ken’s condition was terminal; Ken insisted knowing how exactly he might die. The doctor's response was blunt and chilling, "You can die of an arrhythmia, just like that. You can go into a coma and linger until you perish. Or you can suffocate to death." Alison watched as Ken's spirit seemed to crumble, disappearing into an imaginary hole in the ground. Despite trying to hide her own despair, it was no use — Alison and Ken were both devastated.
After returning home, Ken sought the help of palliative care; they didn’t quite feel ready for hospice. Ken’s condition continued to deteriorate, and in June, after spending a grueling week in the hospital, the dietitian advised, “Ken, go home. Eat cake. Drink. Have fun. Do whatever brings you joy. Go on hospice and go home.”
The following evening, Ken returned home, on hospice. He asked Alison, “Do terminally ill people just wait to die?” She had no answer for him.
Then, one sunny day in June, Alison was talking with Ken’s hospice nurse privately. She asked the nurse if she could estimate how long Ken might have left. The nurse paused and said the magic words: “Did you know that there’s something called medical aid in dying?” She went on to explain the requirements and steps of California’s End of Life Option Act.
Realizing the weight of the information, Alison felt a great sense of power. She was hesitant to tell Ken what she had learned. She knew if she told him, he’d want to do it. A few seconds later, she realized she had no right to keep the information from him; she thought to herself: His body, his choice.
Alison took a deep breath, walked back into their home and summoned up her courage to tell him. Immediately, Ken replied, “Sign me up! I want to go out with a bang, not with a whimper.” It was decided.
In the very moment Alison spoke the words to Ken, she saw his demeanor shift from disheartened and distant to joyous. The option of medical aid in dying gave Ken a new window of understanding. Knowing that he had control and a peaceful way out allowed him to start living again. The ability to circumvent death's timeline and do it on his own terms empowered him.
Ken suddenly understood “death doula” to mean “party planner.” Over the following weeks, Ken relished collaborating with Alison to write his obituary and organize a living memorial, complete with his favorite restaurant's catering and live music. The event drew over 100 attendees, all of whom Ken greeted personally.
The day before Ken was to take his aid-in-dying prescription, he wanted all illness- and hospice-related items removed from his and Alison’s house to make it feel like their home again. The couple spent their last night together in their marital bed, embracing each other. The next morning, Ken declared, “I made it.”
On August 3, 2021, Ken made some final phone calls to say goodbye before turning off his cell phone. With them was Ken’s death doula from hospice and a nurse who worked closely with Ken's prescribing physician. They had received the prescription a few weeks prior and kept it locked away in a cupboard for safekeeping. Today, they would mix it with apple juice, and Ken would drink it from a special glass selected by Alison.
Once Ken was ready, he got into their bed with Alison to his left. She reminded him that he could still change his mind, but he replied, "I will try to squeeze your hand if I can." Ken consumed the concoction in one gulp, then fell into a deep sleep. His hand never embraced hers.
Ken's passing was not quiet or swift. After consuming the mixture, he let out a primordial gasp and then endured several hours of loud and labored breathing. Alison was worried that something had gone wrong, but eventually, Ken passed away.
Only after Ken’s death did Alison learn that agonal breathing is a common occurrence near death, and that labored respirations may occur during medical aid-in-dying deaths just as they do during natural deaths. She had feared that Ken's medication caused these symptoms, but now knew they are a normal part of the dying process.
Despite the difficult final hours, Alison remains deeply grateful. Medical aid in dying gave Ken the autonomy he craved and provided him immense comfort during his last weeks. It was the right decision for him. Alison simply wishes Ken’s prescribing physician had been transparent about what his death might look and sound like. She hopes in sharing her story that she can encourage medical providers to more openly discuss what to expect during the dying process.
Following Ken's passing, Alison felt compelled to share their story and learned lessons with the world. She wrote a book that chronicles their experience and the incredible gift of being able to support Ken in his decision. She has made it her mission to raise awareness about medical aid in dying and make the process easier for others. She shared, “It's shocking to me how many people are unaware that this option exists in California. I will talk about our experience with anyone who will listen, hoping to educate and empower others.”
