He had been fighting the cancer, but now, sick in bed and worried about becoming a burden to his family, he was lost in his thoughts.
“Would this be easier if I just gave up — if I just said, ‘This is too much of a burden on my family, the pain is difficult, I don’t want to deal with this?’ What if I just said I’ve had enough and ended it,” J.J., president of the Patients’ Rights Action Fund, said in two videos recently released by the organization, which opposes the legalization of physician-assisted death.
“I would be okay the next day because I would be gone. I wouldn’t feel the pain. I wouldn’t feel the emotion. They do — my wife would feel it for the rest of her life. My son would not have one more day to spend with me.”
In December, J.J., 36, died of the disease, but his family said he spent his last days opposing assisted death and, instead, advocating for better end-of-life care. His wife said he told her that if he had had the lethal dose of medication on his bedside during his darkest of days, he might have used it and then missed out on three more years with his family. He said he didn’t want that to happen to others.
“Every single day is a gift,” J.J. said in the 2015 video, “and you can’t let that go.”
J.J.’s wife, Kristen, said she wants to continue to spread his “message of hope.”
“Always hold on to hope. Even when you feel you’re at the end, there’s hope to have precious time with your family without pain or suffering,” Kristen, of Sullivan County, N.Y., told The Washington Post last week.
J.J. was diagnosed in May 2014 after he had a seizure.
Kristen said her husband later told her that he felt as if he was having a severe panic attack during a meeting at work — then he got tunnel vision, lost his ability to speak and fell to the floor.
Kristen was at home playing with their then-1-year-old son when she got a call from her husband’s phone number; it was a paramedic saying that he had collapsed and had a grand mal seizure.
Kristen rushed to the hospital.
She said an MRI exam showed two lesions on her husband’s left temporal lobe; a biopsy confirmed it was cancer. She said a neurosurgeon told them the tumors were inoperable. She said they were told to “go home and try to enjoy the time you have left together.”
Kristen said that although she and her husband were overcome by “overwhelming grief,” they got a second opinion — and then a third. The couple found another neurosurgeon, and J.J. ended up having brain surgery at Memorial Sloan Kettering Cancer Center in New York City, Kristen said.
“We were so grateful,” she said. “We had hope that with treatment we could get time together.”
J.J. was accepted into a clinical trial and started chemotherapy and radiation. He seemed to be responding to treatment, his wife said, but in September 2014, he caught a common cold and his body could not beat it. That’s when he became depressed and told Kristen that he thought about ending his life, she said.
“Those were dark days,” Kristen said. “He questioned everything — whether it was worth fighting, whether he was too much of a burden to his family and whether it would be better for everyone if he gave up.”
But J.J. chose another route.
By 2015, he had finished treatment and was tumor-free, but he knew that there was a good chance that the cancer would return.
“Unless a cure is found, the disease will come back — when and how, I don’t know,” he said in the video recently released by the Patients’ Rights Action Fund. “My hope and my fight is to keep it at bay for as long as possible.”
He said he didn’t want to give up.
“You can’t unmake that choice,” J.J. said about physician-assisted death. “Once you do it, it’s done.”
Physician-assisted death has gained ground in the United States — with six states and the District of Columbia legalizing the practice — although it remains a divisive issue among patients, families and health-care providers.
On one side, some doctors argue that physician-assisted death should be a choice for patients who are already dying and want to end their suffering on their own terms. Those on the opposing side contend that such assistance violates one of the core principles of their profession — do no harm — and could become a slippery slope to euthanasia. There’s even disagreement about how to characterize the practice. Opponents say terms such as “aid in dying” are euphemisms that obscure the harsh reality, while proponents see “doctor-assisted suicide” as stigmatizing patients who choose it.
In the 1990s, it was legalized in Oregon, followed by Washington in 2008 and then Vermont, California, Colorado, the District and Hawaii. A court case made it legal in Montana.
The practice drew intense national attention in 2014, not long after J.J. was given a terminal diagnosis. At the time, a terminally ill woman named Brittany Maynard moved from her home in California to Oregon so she could use the state’s Death With Dignity Act. The 29-year-old had been diagnosed with a Stage 4 brain tumor — glioblastoma, the same tumor as J.J.’s — and was told it would kill her within six months. She instead set her own timeline, taking a fatal dose of barbiturates.
In his last days, J.J., who openly opposed the practice, moved closer to family and spent time with his son, James. Then Kristen gave birth to their second son, Lucas.
“Life was good,” Kristen told The Post. “It was a gift to have all that time that we never expected.”
In October 2016, the cancer had returned, and by August the next year, the treatments were taking a toll on him.
“We stopped all treatments for two months to give his body time to recover, and that was when we found out that the tumors had started growing again,” Kristen said. “At that point, we had a discussion about possible treatment options. There was a low probability it would cure him or even slow the cancer down, so he made decision to stop treatment and focus on living one day at a time.”
Kristen said she hopes that her husband’s story will prompt lawmakers to ban physician-assisted suicide and instead work to improve hospice and palliative care for patients. She said she also wants to encourage terminally ill patients to have hope and families to enjoy every moment they have together.
“It was time I would never give back for anything,” she said.