By SUSAN DONALDSON JAMES
Oct. 17, 2011
Jeri Orfali was a top software executive in the early days of Silicon Valley, author of several books and even professionally courted by Steve Jobs until, like Jobs, she was struck down with cancer at the age of 56.
“You don’t think about how someone dies from cancer,” said her husband of 30 years, Robert Orfali. “No one tells you what really happens. It took me by surprise, everything.”
The Orfalis settled in Hawaii, where his wife was eventually diagnosed with ovarian cancer and died in 2009. In her final days, she bore excruciating pain that was not helped by palliative care.
“In the end I could see tumors coming out of her legs and in her neck,” he said. “Her legs were swollen and her stomach was so bloated, the cancer almost burst out of her. She couldn’t get her next breath.”
There is no dignity in dying, according to Orfali, who was so horrified by his wife’s suffering that he wrote two books on the topic and has pushed to see Hawaii be the fourth state to legalize physician-assisted death.
And now, experts working with the national group, Compassion and Choices, and the Hawai’i Death With Dignity Society, have unearthed a 102-year-old provision in Hawaiian law that they say means aid in dying has been legal all along:[W]hen a duly licensed physician or osteopathic physician pronounces a person affected with any disease hopeless and beyond recovery and gives a written certificate to that effect to the person affected or the person’s attendant, nothing herein shall forbid any person from giving or furnishing any remedial agent or measure when so requested by or on behalf of the affected person.”
Advocates say the provision was added in 1909 to give dying patients the option to get treatment that may not have been approved by the government. It likely arose out of now- canonized Father Damien’s missionary work on the Island of Molokai with those who suffered from leprosy.
Some retired doctors now say they are poised to go ahead and help those who seek aid in dying, provided they meet guidelines established by a law in Oregon, where doctors have been legally allowed to end a terminal patient’s suffering since 1997.
Since then, Washington and Montana have also legalized aid in dying.
“I think there is very little risk on my part if I did that,” said Dr. Robert “Nate” Nathanson, 77, a retired general practitioner from Oahu, who said he has kept his medical license current so he could test the existing law. “If you qualify and your own doctor won’t do it, I would be willing.”
Nathanson and Orfali were part of a recent forum on that legal provision and have been advocates for what they call “death with dignity.”
Advocates say that just having the lethal pills gives terminally ill patients peace of mind that they can control their lives and their death.
“I like the term ‘death with dignity’ — it is much better than physician-assisted suicide, which conjures up a person who is depressed and kills themselves,” said Nathanson.
Their loudest critics — right-to-life groups, the Catholic Church and those who represent the disabled — say Compassion and Choices, a national group that grew out of the former Hemlock Society, is spreading “misinformation.”
“Oops, they did it again,” responded the president of the Aloha Life Advocates, Karen DiCostanzo, in the Hawaii Reporter.
The advocacy group claims what they call “physician-assisted suicide” would be a “recipe for elder abuse.”
“The ‘panel’ consisted solely of suicide activists, so this was not a bona fide effort to air opinions from both sides and maintain balance,” DiCostanzo wrote. “Rather, this was meant as a PR stunt to create a news story and arouse public interest in their cause.”
She contends that the 1909 provision was written to allow doctors to give patients nontraditional remedies for illnesses such as Hansen’s disease (leprosy), tuberculosis and asthma.
Though she assails their argument as “weak,” DiCostanzo urges Hawaiians to “act now” to prevent Hawaii from going the route of three other states that give a physician the freedom to prescribe fatal medication to mentally competent patients who are terminally ill without fear of prosecution.
The Catholic Church was one of the groups that derailed an effort in 2002 to legalize assisted death in Hawaii. The bill, which had been introduced by Democratic then-Gov. Benjamin Cayetano and passed the state House of Representatives, was defeated 14-11 vote in the state Senate.
“What strikes me as so ironic about the movement for physician-assisted suicide — is that it is portrayed as a movement to affirm individual freedom and autonomy,” said the Bishop of Honolulu Clarence (Larry) Silva in an email to ABCNews.com. “However, the fact of the matter is that people have been committing suicide quite autonomously for millennia, without the help of physicians.
“The fact that the proposed laws require informed consent before a lethal dose can be prescribed indicates to me that in the depths of their hearts people know that suicide is wrong,” he said. “They seem to want a way to convince themselves that it is acceptable by having a ‘higher authority’ authorize it.”
He said suicide is “always a tragedy” and hurts family and friends who are “left behind,” leaving them with grief and “lasting guilt.”
But advocates for aid in dying say that end-of-life care is sometimes inadequate.
Orfali, who described his devotion to his wife as “love on steroids,” said her last days were agonizing when morphine and two other standard medications were unable to alleviate her pain.
She had been a champion surfer in her age class throughout chemotherapy, but in the end, “nothing worked,” even with the palliative care of hospice, he said.
Hospice care varies, according to Nathanson, who was one of the founders of two hospices in Hawaii. “They belong to a national association, but they make their own rules.”
Some allow “terminal sedation” — that is, giving an intravenous cocktail of drugs that depress respiration and hasten death — but others do not.
But terminal sedation is under a doctor’s control, according to Nathanson, and “the patient has no say in it.”
Critics of Oregon’s law have used the “slippery slope” argument that “people would come from miles around to get medicine and we would be bumping off the elderly and the poor,” he said, but that never materialized.
According to a report from the Oregon Department of Human Services, 95 prescriptions for lethal medications were written in 2010, compared to 88 during the previous year. Of those, 59 patients took the medications.
“There is also an incredible paradox here,” said Nathanson. “The people you end up writing a prescription for may end up living longer than expected. … They didn’t have the toxic anxiety that eats at you.”
As for Orfali, he said that had his wife been able to get a prescription for the Nembutal, the drug used in Oregon, she would have been spared so much suffering.
Jeri Orfali even ordered lethal medication on the Internet, but never used it.
“She really wanted pills as a backup, but she was too afraid to use them,” said her husband.
Medication obtained online often isn’t strong enough to induce death and a family member needs to be nearby to “finish off the job,” according to Orfali.
“She was a nonviolent person,” he said. “The last thing she wanted me to do was to put a bag over her head.
“She told me on her way out, ‘This doesn’t make sense to me in this condition. Can I try like in Oregon? That was the only thing she asked me in the end,” Orfali said.
Eventually, Jeri Orfali was given terminal sedation, but she endured 16 hours of tortured breathing before she had a blood clot and her lungs collapsed.
“It was like watching someone water boarded in front of you,” said Orfali, who wrote two books on the topic, “Death with Dignity,” and, “Grieving a Soulmate.” Meanwhile, he wonders about Steve Jobs’ death of respiratory failure just two weeks ago and whether he suffered as Jeri Orfali did.
“Everyone talked about how great things were and how he lived a great life. But did he have a good death?” asked Orfali. “Death is an ugly thing.”