"Keeping me alive is costing thousands of dollars a week. Thank God I have Medicare, this wouldn’t be an issue if I didn’t have insurance," says Radcliffe as he laughs.
A man waiting for his diagnosis
John Radcliffe, 75, sits alone as he waits to be called in for his 44th round of chemotherapy. This morning he woke up with bumps on his body that he did not recognize. Instead of waking up in a panic, something he used to do three years ago, he calmly called his oncologist and described the bumps. A frequent visitor in both the waiting room and emergency room now, he has been in the ER fifteen times due to cancer related symptoms. This is a regular occurrence for John now.
“I’d been feeling tired, I wasn’t able to come back as fast I usually could...I usually have to go in and get colonoscopies anyway. I ended up getting a colonoscopy and an endoscopy. In the middle of June 2014, I came out of it and they said yes, sorry to tell ya,” says John as he leans back in his recliner. The doctors told him he had colon cancer that had already spread to his liver and he had only six months to live, maybe 24 if he took precautions.
“Everybody has to die sometime,” says John as he laughs before his face drops, “Then it’s a matter of dealing with the anxiety, the pain.”
It has now been three years and John is still living on borrowed time. His diagnosis still remains the same - only six months to live, but he treats his pain with anti-anxiety medication, meditation and medical marijuana. Radcliffe is unsure if he wants to continue his treatment for much longer.
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With Hawaii ranked as having the country’s largest aging population, hospice use and palliative care are as high as they have ever been. Medical aid in dying is the choice to end one's life "on their own terms." Current law only allows terminal patients the ability to refuse treatment and begin the process of stopping all life-sustaining treatment - eating and drinking. This legislative session, a bill has been proposed to legalize medical aid-in-dying.
“I do not want to die, but I am dying,” says Radcliffe as he looks out of his apartment’s lanai out to Makiki Cemetery- a view he has fought to see for the past three years since his diagnosis.
Born in Tomahawk, Wisconsin,“a part of the world that is pretty much how Trump sees it”, a town with a population around 3,000 Radcliffe started working when he was only 5 years old where he grew up in poverty at a farm without plumbing. The first time Radcliffe took a shower ever, one not in a tin bath, was in high school. The people surrounding him were woodsmen or mill workers, but the factories soon closed - the only thing left he describes from back then is Harley Davidson Motorcycles. At 19, Radcliffe married Diane and four days shy of his 20th birthday had his daughter, Romy.
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After leaving college and becoming a schoolteacher, Radcliffe then came to Hawai’i in 1975 as the Executive Director of the Hawaii State Teacher’s Union. At one point, Radcliffe unsuccessfully ran for Congress - an experience he calls “ultimately good for me.”
As a union organizer and lobbyist for more than four decades, Radcliffe has become a trusted figure in and out of the rotunda of the State Capitol. No elected figure remains from the beginning of his time at the State Legislature.
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"It would be entirely different...most of this coping is because I am comfortable enough to cope. This is painful, but I don't have any bills. Not everyone has got an extremely talented, capable or empathetic family," says this before standing to grab a picture frame off of the bureau in the front hall.
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“These are all new,” as Radcliffe brings out a framed picture of a family.
“I was 13 years old when I fathered this guy. He’s 60. I’m 74 now. I was dying in September of 2014. I had lost all my hair, I was down to 130 and just in tough shape. I had gotten a letter from this guy. You don’t know me, but you might know a name - Nancy Anderson.”
Around 1956, Radcliffe - only in eighth grade at time - and Anderson - a junior in high school - entered a romantic relationship. Anderson became pregnant and “all hell broke loose.” In a poor community in Wisconsin, Radcliffe and Anderson were both in the lowest bracket. Anderson, all of a sudden, disappeared. Radcliffe then went on the computer and looked up his son. “Jesus Christ he looked just like me,” says Radcliffe as he trails off looking down at the frame of his newfound family. He then called him and explained his situation and asked his family to come visit him in Hawai’i. Due to the cancer, Radcliffe cannot fly anymore. The whole family has now been out in Honolulu four times, his grandson and their kids will be flying out in September "if John is still here."
“I’m just now setting up college accounts for my great-grandchildren now,” as Radcliffe points out all four of them in the frame, "I’ve just been absolutely stunned by this. It’s been one of the best things that has ever happened in my life.”
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On January 18, Radcliffe took his 43rd round of chemo treatment and “didn’t make a big deal about it” while seated next to Senator Rosalyn Baker during the opening of the Hawaii State Legislature. A longtime friend of Radcliffe, House Speaker Joseph Souki urged his colleagues to approve a measure that he described as “compassionate choices” in dying. As Souki spoke, Radcliffe sat with his chemotherapy pumping through a monitor by his side. What Souki was describing is what Radcliffe and others in the community are looking for the State Legislature this session to pass - medical aid in dying.
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Medical aid in dying is known as death with dignity. The bill would only pertain to mentally competent adults with terminally ill conditions that have a prognosis of six months or less to live.
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Just like on opening day, Radcliffe finds himself in his home recovering from another round of chemotherapy wondering if he has done the most he could while he has been alive. His next round of chemotherapy is just next week - his 47th round.
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"The chemo is tough, it's just tough..." as Radcliffe trails off and looks around at the walls of his apartment decorated with pieces of Asian art. The chemotherapy as John describes it creeps on you like any kind of poison. The conversation stops for a few moments as he pulls up photos of the port and himself in chemotherapy. Before he even begins the chemotherapy process, Radcliffe prepares with anti-constipation pills. However he tries to keep his attitude about the situation light-hearted, often attending sessions wearing an Aloha shirt.
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His process involves going in three days in a row before driving himself home. By the third day of the week, he feels worse. By Saturday it's up in the air, he might be better or not.
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"In the past by Saturday or Sunday I was good. Now it's getting to be [next] Monday, Tuesday, Wednesday before I'm not in pain, nauseous or anything." It's a sign that John is not getting better, but worse as time goes on. Not many are in the same situation as John though he admits himself. It's not an issue just affecting John, as the argument for the choice to legalize medical aid-in-dying continues, patients are continuing to get worse.
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“Nobody can tell me I don’t have that right. I do, now the question is am I going to get a shotgun and get in my shower and blow my head off? Messy, ya know?” says Radcliffe.
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A poll conducted by QMark Research showed that 80 percent of registered Hawaii voters believe a medical aid in dying option should be legal. 55 percent of local residents felt that residents should definitely have the option available to them, while 25 percent thought it should probably be available locally. Support on Neighbor Islands was stronger, but on Oahu half still believed that patients definitely should have the option.
From the poll conducted last December, a majority of Catholics as well as those associated with the Christian Fellowship supported the proposal.
“It is illogical for the state to promote and facilitate suicide for one group of persons. Assisting in a person’s death is not medical treatment, no matter how it is spinned,” said the Roman Catholic Church in the State of Hawaii during the hearings held at the State Capitol. While there may be supporters, the Hawaii Catholic Conference submitted 38 pages of opposition signatures during the first rounds of hearings.
However, the question that Radcliffe is calling others to ask themselves is “What’s the quality of it (life)?” That is what Radcliffe and others are asking legislators to consider when hearing the medical aid in dying bill this session.
“I’m not trying to be obnoxious about. Truly, if I had to depend on the legislature to be comfortable with myself and my life, at the end of my life - that would never happen.”
“I’ve never done anything like this and I don’t like it. I don’t like being the poster boy and not being the lobbyist,” says Radcliffe as he crosses his arms and begins to tap his fingers.
Radcliffe has been helping Compassion and Choices, a nonprofit organization in the United States that states their mission goal to be working to improve patient rights and individual choice at the end of life, by coming to speak to the public at hearings. These hearings have proven to be more emotional than expected as Radcliffe now has phone calls coming in weekly of patients, family members of patients and overall complete strangers wanting to talk about their experience.
“Over this time I have come to very strongly believe that all persons should have the right to decide how and when to end their life when, in their judgement, the suffering becomes unbearable,” said Charles Miller, a now retired oncologist, told a crowd of almost 100 at a public forum held in the Capitol Auditorium in January. Miller has now become known as the second plaintiff in Radcliffe v State of Hawai’i. Radcliffe has chosen Miller as the doctor to help him administer his medication.
“I would do this whether it’s legal or not,” chuckles Radcliffe, “I mean it’s not like they’re going to do anything to me.”
Radcliffe has made backup plans not only for himself, but for others in the State by filing suit against the State of Hawaii. The lawsuit is to establish the constitutional rights of individuals to request and receive a prescription to end suffering via the practice of medical aid in dying. Radcliffe’s claims are based upon patient's’ fundamental rights of privacy, individual dignity, due process, equal protection of the law and the right to seek happiness in all lawful ways.
However, the outcome of this lawsuit could takes months or even years to finally come out with a result.
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In February, the community stood outside the doors of Room 428 waiting to hear the results of the first hearing of the bill. Senate Bill 1129 passed unanimously by the Committee on Commerce, Consumer Protection and Health with the help of over 900 pages of testimony given by departments, lobbyists and the community.
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With the passing on to committee, the bill had a month before crossover to the House. However, the bill passed with key concerns involving vague terms and questions on how a patient can self-administer without coercion.
"Don’t kid yourself, this is not a moral issue,” Radcliffe told senators during the hearing. “This is all about relief, life-ending relief. It’s also about being human.” Alongside Radcliffe sat Miller at his side. “The unfortunate reality is that nearly all of the cancer patients die,” Dr. Charles Miller stated in his testimony to the senators.
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Hawaii statutes already do not prohibit medical aid in dying, however the Attorney General (AG) has opined that medical aid in dying could be prosecuted under the offense of Murder in the Second Degree, a felony punishable by a sentence of life imprisonment. Former AG David Louie had approved an opinion in 2011 that suggested that criminal prosecutions may be brought against physicians who provide medical aid in dying. This control that doctors could have is the main concern for not only legislators, but the public.
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With high hopes, legislators and community members believed this was the year that medical aid in dying would go through to the Governor’s desk at the end of session. In March, the House Committee on Health listened to concerns and deferred the bill stating that the language was too vague and did not provide safeguards against abuse and coercion.
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“I can tell a patient when they have days or weeks to months, but to certify when the stakes are that high when someone has six months or less I can’t do that.” said Dr. Daniel Fischberg from Queen’s Medical Center.
Opinions for psychologists and doctors during the hearing came armed with concerns that patients would choose the option without thinking through the consequences, especially patients who suffer and require psychiatric help. Concerns stemmed from how terms like medically confirmed terminal disease would be defined in law. Other doctors described similar experiences, especially when patients were in questionable circumstances.
“I understand it, it comes with the Hippocratic Oath do no harm, but you know a little common sense would be useful. Most of the doctors I’ve talked to support this option,” said Radcliffe. Radcliffe had only removed his chemotherapy pump three days earlier and was still in shock from the treatment. He had to request to be put out of order in the hearing because he was too unwell to stay for the entirety.
Wearing his typical uniform of an Aloha Shirt and khakis, Radcliffe adds a jacket today because of the temperature in the room. The rest of the room is filled with blue t-shirts with the Compassion & Choices logo filled the room as legislators told those who were in the room not to cheer or boo during the three hour hearing. Each piece of the testimony is allowed to be only a minute long, a rule Radcliffe has experienced for years in the legislature.
“All I can do is beg you for mercy at this point,” says Radcliffe as he is cut off once the timer announces he is past the one minute mark. Radcliffe had only reached finishing introducing himself as the pace of his testimony has suffered from his illness.
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The major piece of legislation that affected the votes of the House Committee on Health was testimony from Dr. Rae Seitz, a palliative care specialist, and one of the few who did not support the bill.
“It’s easy to write a prescription, it really is. But all of the work done to reach a decision about what is appropriate and what is an authentic decision on the part of an individual, that’s a long and a hard process particularly at the end of life,” said Seitz during the committee hearing.
Legislators were concerned with self-administration and the medication itself. The committee further stated that for the measure to pass and for medical aid in dying to be an option, it could not be the only option. It is important to note though that there has not been a documented misuse or abuse of the medical aid in dying practice throughout the United States.
In total, the bill had over 3000 pages of testimony with a mix of those in support and in opposition. With overwhelming dissent from both legislators and the community, medical aid in dying will not get a chance to change its language before the session ends. It will have to wait for next year to be heard again, time that Radcliffe and others may not have.
“This is about your chance to if not vanquish death, then at least to cheat him a little bit of the pain at the end.”
The questions John has raised all center about one thing - what he will do when the time comes. He has no new timeline and will not receive one from his doctors in the near future. With the
State legislature deferring the bill, it’s up in the air when medical aid-in-dying could pass. However, John believes if you don’t have a quality of life, you don’t have a quality of life.
“At some point, it’s going to grab me and I won’t be able to get out of it...I have to make a determination if I want to deal with that by having a colostomy bag and all that crap. I don’t want to do that. Nah, that’s bullshit,” sighs Radcliffe as he leans forward in his seat.
It has taken John time to figure out if he would take the medication or not, in the end he is still unsure. What remains certain is that he would like to maintain having the option. He describes the situation as one time when morally he could not kill a man in a fight.
This has never been about himself for John. His history is done and he has done what he can during his time. He is doing this for ‘all the others who need and want a fair shot.’ Members of the communities will remember John Radcliffe as a champion of causes and a fighter until the end. Perhaps, this may be his last and greatest fight.
“Have I done things I’ve regretted? Oh yes, very much. There are plenty of things I could have done better, been a better person, been a nicer person. But, I did as well as I could, for as long as I could."
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"A card carrying Democrat and liberal,” Radcliffe has lobbied for civil rights, education and other businesses and industries. A co-founder and former president of Capitol Consultants of Hawaii, he has not always been on the popular side of issues. “As a lobbyist, most of my job and I hate to say this is nagging.” In 2014, the uproar over genetically modified organisms (GMOs) in Hawaii resulted in Radcliffe representing Monsanto, a firm that develops GMO seed varieties sold across the world. Another controversial proposal that Radcliffe supported was legalizing gambling.
Even though Radcliffe is technically retired now and not supposed to be working, he still finds the time to lobby for issues he is passionate about. He is currently working on getting autocycles passed as legal vehicles or motorcycles to drive in the street. “It’s a motorcycle, not a car - because I said so,” as Radcliffe shows off a picture of one with flames on his IPad. The bill is currently passing Radcliffe exclaims excitedly.
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‘It’s things like that and marijuana, it’s little things like that, give people what they want, what the hell you know?”
Radcliffe however is also seriously lobbying on behalf of another topic one that deals with not only himself but those in need with the help of Compassion and Choices who want to make the conscious decision to die with dignity.