My husband, Larry Fells, passed away on January 17, 2019, after taking his aid-in-dying medication.
Larry was only 49 years old when he was diagnosed with stage IV bowel cancer. The prognosis was not good and the doctors gave Larry about a year and a half to live. We were living in Australia at the time for Larry’s work. In light of this news, Larry chose to take early retirement and we moved back to the Sacramento area.
In June of 2014, we arrived in northern California and were closely following the medical aid-in-dying bill. We both agreed that no one should have to leave their home and re-establish their life elsewhere to get the care they need at the end of life.
For the next three years, Larry tolerated the chemo relatively well. We were able to enjoy the things that Larry loved most—travel, golf, good wine and good food. And he always looked in optimal health as he never lost his hair and never lost weight.
Unfortunately, in September 2017, a colonoscopy revealed a surge in the growth of the tumors. The chemo regime was no longer working and Larry would have to go on a stronger form of treatment. Although Larry was willing to try something stronger, he was adamant that he did not want to suffer through horrific side effects just to prolong his life. His mantra was always quality of life over quantity of life.
By this time, California’s medical aid-in-dying bill had become law and we discussed this option with his oncologist. He explained the process and advised us he was not a participant in the program but he would be able to refer Larry to a participating doctor.
In the Fall of 2017, Larry started the new round of stronger chemo. However, within a few months, the side effects were unbearable so he decided to end all further treatment in May 2018.
By August, Larry’s blood work revealed the progression of the disease. His oncologist confirmed that Larry had about six months to live so we started the process of requesting medical aid in dying. Shortly after starting the process, Larry was offered to participate in a new clinical trial for individuals with stage IV bowel cancer. With nothing to lose, Larry decided to give the trial a chance. Unfortunately, after only one treatment, Larry developed a fistula which disqualified him from continuing in the clinical trial.
Larry was in an incredible amount of pain and out of options that could potentially extend his life. He was hospitalized on Christmas Day 2018, after learning his fistula had become infected and developed into a flesh-eating bacteria that would end his life in 2-3 days.
On December 28, Larry was sent home under hospice care. Seeing him in such immense pain was a nightmare. I couldn’t do anything to relieve his pain and suffering, even with hospice staff coming out twice a day to help manage his symptoms. I was so distraught. I knew Larry would never want to be in this unconscious state and live his last few days under these conditions, but there was nothing I could do.
On New Year’s Eve, Larry’s fistula burst open through his skin, which required more intensive care. To everyone’s surprise, hours later Larry became more coherent and able to communicate. As he continued to make small improvements, we discussed the option of getting him to see the doctor for his final visit to obtain an aid-in-dying prescription. We got Larry to the final appointment but it was an excruciating process for him. I picked up the medication, which was not covered by his insurance, on January 17. Larry died peacefully that same day.
I’m so grateful that my husband was able to utilize this compassionate law, however, our experience should have gone more smoothly. We relied on our hospital provider for direction. I learned later that their protocols do not mirror the law’s protocols; our provider imposed additional limitations on the process. For example, their doctors are not allowed to provide teleconference calls in lieu of an office visit. This imposed a significant hardship on Larry that could have been avoided. If only I had known more about the law and how it works, I believe the process could have been easier on us.
I hope that sharing my story will encourage lawmakers to consider amending the law to make it easier for terminally ill individuals to access this important end-of-life option.