Death on his terms
Terminally ill man moves across the country to find a peaceful end
“I always knew I wanted control in the end and that I didn’t want to be dependent. I didn’t want to have to wear diapers or be in a medicated coma, sleeping most of the day.” Kevin Roster
Kevin Roster makes it abundantly clear he doesn’t want his life to end any time soon. But since that decision was taken out of his hands in his mid-30s, he wants a say in how it happens.
The semiprofessional poker player from New Jersey has a rare form of cancer called sarcoma that required the amputation in April of his left hindquarter and leg and the removal of a 20-pound tumor, leaving him in a wheelchair. His prognosis dwindled from months to weeks to live as the cancer spread to his heart and lungs.
So in the spirit of Brittany Maynard – the terminally ill newlywed who brought the conversation about medical aid in dying into America’s living rooms in 2014 when she moved to Oregon to seek authorized assistance in ending her life – Roster shifted his home base to a state where he can legally take similar steps.
Despite his compromised condition, Roster traveled cross-country to California, which, in 2015, became the fifth state to enact a law allowing medical help in dying. New Jersey joined the ranks, but its law doesn’t go into effect until Aug. 1, and Roster doubts he has that much time.
Roster, 36, is the second person to publicly declare the intention to die with medical help after Maynard, rightto-die advocates said, although that notion is hard to verify because states don’t keep records of who comes in for that purpose.
“I wanted to die the way I lived, which was independently,’’ Roster said. “I haven’t punched a clock since I was 20 years old. I didn’t want to have to be on cancer’s clock.
I wanted to be on my own clock. … I always knew I wanted control in the end and that I didn’t want to be dependent. I didn’t want to have to wear diapers or be in a medicated coma, sleeping most of the day.’’
Before taking the lethal prescribed drugs, which he’s in the process of obtaining, Roster and his caretaker drove from the Sacramento area to Las Vegas, so he could play in the World Series of Poker, the annual tournament in its 50th edition.
Roster, who started playing June 5, wears a T-shirt with information about sarcoma and a hat with the logo of Compassion & Choices – a nonprofit group that advocates for laws to expand endof-life care options – in an effort to raise awareness about both. Roster is not shy about striking up conversations regarding those less-than-cheerful topics and hopes to advance far enough in the tournament to appear on ESPN.
The former collectibles entrepreneur, who has a 9-year-old boy with his estranged wife, is sure to point out how much he loves life and how difficult it was to come to grips with the idea his days are numbered. Roster said he would accept using a wheelchair if he could continue to do the things he enjoys, but that soon won’t be an option.
Neither is suicide, which he sees as entirely different from getting medical help to end his suffering. The date will be determined by how quickly his illness progresses. Eight rounds of chemotherapy and dozens of radiation treatments have not stopped it.
“I don’t want to die. What I want is a peaceful death. It doesn’t seem to me that you’re going to have a peaceful death if you’re committing suicide in a hotel room somewhere,” said Roster, who has kept a blog and posted videos about his travails. “I don’t want to be known as somebody who committed suicide. The disease is killing me. The cause of my death is cancer, not that I didn’t love life or wanted to end my life.”
Concerns by faith-based groups
That point may be debated by groups that object to medical help in dying, most of them faith-based.
“Our hearts break each time we hear about someone who is suffering to the point of pursuing the so-called ‘compassion’ of euthanasia,” said Jim Daly, president of the Christian ministry Focus on the Family. “At the same time, as a Christian, I believe it is wisest to allow the author of life to make the decision of when an individual’s earthly life should end.”
The Catholic Church has fought state legislative attempts to legalize the procedure. In a policy statement on what it calls “physician-assisted suicide,” the U.S. Conference of Catholic Bishops said, “Jewish and Christian moral traditions have long rejected the idea of assisting in another’s suicide. Catholic teaching views suicide as a grave offense against love of self, one that also breaks the bonds of love and solidarity with family, friends and God.”
The church and other organizations raise concerns that laws allowing medical assistance in dying could be susceptible to abuse, especially of elderly and mentally disabled patients. Opponents worry about the influence of economics in the process of deciding who should receive the lethal drugs.
The regulations adopted by the eight states with such laws – typically modeled after Oregon, the first state to put them into effect in 1997 – contain a number of safeguards designed to protect patients.
Patients must be at least 18, judged to be mentally competent and diagnosed with a terminal illness with a prognosis of six months or less to live, confirmed by at least two physicians. There are provisions to prevent coercion and a 15-day waiting period from the time the lethal medication is first requested.
“At every step along the way, patients have a choice to say, ‘I want to put this on hold,’ or ‘I don’t want to pursue it,’ ” said Stephanie Marquet, a hospice attending physician in Oakland who has written such prescriptions. “It’s really voluntary every step of the way, and for those folks who get the lethal prescription, not everyone takes it.”
Marquet, who works with patients who have chronic disease or who face their final days, estimated about half of them inquire about the drugs, and of those, about half take them. She said death was peaceful in all instances in which she has been involved: The patients quickly went into a sleep-like coma before passing away.
That’s what Maynard and her husband, Dan Diaz, had in mind after they got the awful news about her terminal brain cancer early in 2014. They researched her choices, and as the inevitability of her impending death became clear, Maynard opted against the standard treatments in favor of going out on her own terms.
Prominent on social media, Maynard became the face of the right-todie movement, a cause Diaz continues to promote. He wrote a letter to New Jersey Gov. Phil Murphy as the Democratic leader pondered a medical-aidin-dying bill and was invited to the signing ceremony.
A total of 18 states introduced similar legislation this year, and 12 are still considering it. Opinion polls, including one conducted by Gallup in May 2018, show about 70% support in the U.S. population.
Changed ‘the conversation’
“Brittany’s message really did change the conversation about endof-life care and the options a person should have,” Diaz said in a phone call from Los Angeles. “I’m proud we have made the progress we’ve made, but it’s sad that, in Kevin’s case, it may not come around quickly enough in New Jersey, so he’s had to move out here.”
Diaz said the changes have been brought about by a better general understanding of what the procedure entails, the realization it’s not the same as suicide and a different terminology.
Proponents eschew the terms “assisted suicide” and “euthanasia” – which requires another person to cause the death – for the cumbersome but less jarring “medical aid in dying.”
“What has changed is that recognition of what a person in Brittany’s predicament is facing, what they’re going through,” Diaz said. “That has played a role, people framing this differently.”
Those moving to another state to seek help in dying face added expenses and the hassle of establishing residency, in addition to finding willing physicians – participation in the practice is voluntary – and a pharmacist to fill the lethal prescription. Roster said the trip to California was agonizing.
The move usually proves too demanding for patients at the end of their days, who tend to be older.
“Kevin’s courageous story vividly demonstrates the need to pass medica-aid-in-dying laws in every state – and promptly implement them,” said Kim Callinan, CEO of Compassion & Choices. “Because no terminally ill person should have to endure what he is enduring just to avoid unbearable suffering at the end of their life.”