Kailua, HI – Compassion & Choices Hawaii, an affiliate of Compassion & Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today responded to the tragic death by gunshot of an elderly couple in Hawaii Kai. Complete facts about this tragedy have not come to light, but what we know fits an unfortunately common pattern. Too often the lives of a loving couple end in violence, as one shoots the other in despair. Unable to live with what they’ve done, they immediately turn the gun on themselves.
Many elders see few options as illness advances and bodily functions deteriorate. Yet options always exist that are preferable to violence and premature death. Death remains a taboo subject in our society, so elders feel they cannot speak openly about situations where they might deem death preferable to a deteriorating and declining quality of life.
“No one, no matter what their condition, should feel they have to resort to violence when confronting advanced illness,” said Dr. Robert “Nate” Nathanson of Waialua, Hawaii. “Patients and their caregivers need to feel safe talking about unbearable symptoms and their feelings of desperation.”
People in Hawaii have many options as they approach the end of life, if they contact a knowledgeable and sympathetic listener. “The fact is that an honest conversation can often prevent a tragedy,” said Dr. Nate, “by leading to respite care, hospice, pain control, counseling or other forms of support.”
Since 1993, Compassion & Choices’ End-of-Life Consultation program has served thousands of clients, helping them find alternatives to violence. Peaceful, gentle means always exist to end life in a way that honors the life lived. The purpose of Compassion & Choices’ End-of-Life Consultation program is to ensure excellent end-of-life care and, if that care does not relieve unbearable suffering, provide information on a client’s options for a peaceful, dignified death. Individuals seeking information about end-of-life decisions can access Compassion & Choices Hawaii’s End-of-Life Consultation service by calling 1-800-247-7421.
Trust Doctors, not Government to Guide Aid in Dying
HONOLULU – Compassion & Choices Hawaii, the local affiliate of the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, and the Hawai’i Death with Dignity Society today responded to an opinion on “assistance with dying” by Hawaii’s attorney general. The organization joined attorneys and physicians in expressing confidence that when the time comes, patients can request, and doctors will provide, aid in dying. Terminally ill, mentally competent Hawaii patients can request a prescription that gives them the peace of mind of knowing they could achieve a peaceful death in their homes, with their families and loved ones.
“Almost everyone in Hawaii agrees that terminally ill individuals, not government, should make end-of-life decisions and control end-of-life options,” said Robert “Nate” Nathanson, M.D., a founder of Hospice Hawaii. “The people of Hawaii overwhelmingly trust doctors to establish guidelines and respond appropriately to requests for medication to bring about a peaceful death if suffering becomes unbearable.” The results of a recent poll bear out Dr. Nathanson’s assertion. In the poll, 90% agreed the decision about aid in dying is a personal one between patient and doctor. Eighty-one percent (81%) said they trust their doctors to respond appropriately to a request for medication to bring about a peaceful death if suffering became unbearable. A complete summary of poll results can be found at CompassionAndChoicesHI.org.
The reasoning of the attorney general’s opinion is flawed. Focusing narrowly on a single 1909 statute, the opinion failed to appreciate how a constellation of Hawaii laws vests its citizens with broad autonomy over end-of-life decision-making. It does not mention findings in other states, including the persuasive authority of Baxter v. Montana or the recognition by Georgia’s attorney general that his state’s law against “assisting a suicide” does not cover aid in dying.
“The palliative benefits of aid in dying are very significant,”said Dr. Nathanson. “It offers relief for terminal pain and anxiety. And it lets some patients live longer and with peace of mind during their last days. This is comfort care at its best. When doctors cannot cure, at best they can provide relief.”
Chaired Professor at NYU Law School, frequent visiting Professor at Richardson and resident of Kailua Sylvia Law said, “Legal opinion differ and change over time. Hawaii has many laws which offer patients autonomy in end-of-life care and pain management. The state does not outlaw aid in dying with the sort of specificity required of a criminal prohibition. So it is reasonable to conclude Hawaii physicians can respond to these requests subject to best practices, without fear of prosecution.”
77% of Voters Favor End-of-Life Choice for Terminally Ill,
Near the Highest Level of Support in Nation;
Near-Unanimous (90%) Support for Patient’s Rights
HONOLULU – Compassion & Choices Hawaii, the local affiliate of the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today released a poll finding 77% of Hawaii voters support access to aid in dying. The survey showed overwhelming majorities believe self-determination at the end of life is their right, and trust individuals and doctors – not the government – to make decisions about this medical practice. Seventy-seven percent (77%) favor or strongly favor allowing mentally competent adults dying of a terminal disease to ask their doctors to prescribe medication that gives them the peace of mind they can achieve a peaceful death. This level of support is among the highest of any state in the nation.
Former State Representative Ernest “Juggie” Heen, who is suffering from incurable liver and pancreatic cancer, told the news conference, “I am part of the 77% who believe in choice, and hope for some measure of control at the end of life. I have sought treatment, but there is no cure for my cancer. Chemotherapy might offer a few weeks or months, but the cancer is incurable. I have lived a full life and want to achieve a peaceful death. When the time comes, a prescription for medication I could take myself to achieve a peaceful death would greatly ease my anxiety about pain and suffering.”
Hawaii pollster Barbara Ankersmit, president of QMark Research, conducted the poll and presented the findings at a Honolulu news conference. “More than three out of four favor allowing a mentally competent adult who is terminally ill the right to bring about their own peaceful death with the aid and consultation of their physician. Nearly all Hawaii voters believe that terminally ill individuals, not government, should make end-of-life decisions, control end-of-life options, and trust doctors to establish guidelines and respond appropriately.”
These are highlights of the poll:
• 77% favor allowing those who are dying of a terminal disease the choice to request and receive medication from their physician to bring about their peaceful death;
• 90% agree the decision about aid in dying is a personal one between patient and doctor;
• 87% believe people in the final stages of a terminal disease should have the right to bring about their peaceful death;
• 83% say the medical community rather than the government should establish proper guidelines and safeguards; and
• 81% trust their doctors to respond appropriately to a request for medication to bring about a peaceful death if suffering became unbearable.
A complete summary of poll results can be seen below. A PDF is available here.
Robert “Nate” Nathanson, M.D., a founder of Hospice Hawaii, believes that aid in dying is in line with current standards of medical care: “Most medical care is governed by practice standards. These include many practices that may advance the time of death,such as withdrawal of life-sustaining treatment and palliative sedation. Patients make these difficult decisions every day in consultation with their doctors, their loved ones and their own consciences. Aid in dying is no different.”
Experts on Hawaii law, medicine, elder care, legislative and end-of-life issues have concluded Hawaii physicians may already provide aid in dying subject to professional best-practice standards.
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.”
A friend sent along this deeply touching blog post by the husband of a woman with brain cancer who chose the time and manner of her own death. After losing control of one side of her body due to the terminal illness, she was allowed to take control of her own destiny in a painless fashion surrounded by family, friends and relatives because of Washington’s Death with Dignity law. In most other states across America, she would have been forced to linger increasingly painfully and helplessly without recourse despite her wishes.
Vermont and Massachusetts are working on their own versions of this law as well, and I am pushing legislators in California to get the ball rolling again on this as well.
The principle involved here is that people with terminal illnesses should be able to choose the time and place of their passing. They shouldn’t be forced to allow their illness choose it for them. Obviously, safeguards need to be put in place to prevent the terminally ill from being pushed into the decision. But those safeguards are written into any decent version of the law.
With the graying of the U.S. population, this is increasingly a major issue of social justice. The wealthy, as they do now, will have personal physicians who will “accidentally” allow their patients to administer morphine overdoses. But the poor will be forced to suffer needlessly. Nobody should be forced to extend their life wracked with pain because the State told them it was illegal to do otherwise.
Despite my young age, this is an important subject for me. I am very goal-oriented in my own life, and I don’t take well to incapacitation through illness or otherwise. I don’t drink alcohol or do drugs not because of moral concerns, but because I don’t like not being in control of my mental faculties. My priorities in life are 1) to make the world a better place; 2) to take care of my family and friends; 3) to see and experience as much of the world as possible during my brief stay on the planet; and 4) to do it all with as much autonomy as I can.
If I’m lucky enough to live a long life and die from a slow illness such as cancer, I would hope to be able to be in control of that process. If I’m mentally incapacitated, it will be difficult for me to help make the world a better place; my family and friends would be taking care of me, rather than the reverse; I wouldn’t be able to see or experience much while laid out in bed; and the illness itself will have removed much of my autonomy. A few more debilitating and painful weeks or months of life will not be valuable to me. What will be valuable is the ability to say goodbye to my family and my friends in a dignified and compassionate way as I prepare to take that final journey toward a destination unknown.
The idea that so-called “freedom-loving” conservatives would take that freedom from me is infuriating, and part of the struggle to which I have devoted my life includes stopping them from forcing their misguided authoritarian priorities on the rest of society.
