By Ann Neumann
A good name is better than precious ointment; and the day of death than the day of one’s birth. Ecclesiastes 7:1 KJV
“I will take my life today around noon. It is time. Dementia is taking its toll and I have nearly lost myself. I have nearly lost me. Jonathan, the straightest and brightest of men, will be at my side as a loving witness.” These are the opening words of a four page post at the website Dead at Noon, written by Gillian Bennett, a philosopher and psychotherapist who lived with her husband Jonathan on Bowen Island off the coast of British Columbia, Canada. The post is not dated but CBC News reported the 84 year-old died on August 18, 2014. “Three outsize institutions: the medical profession, the Law, and the Church will challenge and fight any transformative change. Yet we all hear of changes in each of these professions that suggest a broader approach, guided and informed by empathy. My hope is that all of these institutions will continue to transform themselves,” writes Bennett. Aid in dying is not legal in Canada; Bennett does not say where she got the medication. But the plight of those like Bennett is receiving increased attention across the globe.
At the end of August, the Zurich Institute of Legal Medicine reported that 126 Britons, 21 Americans, and 12 Canadians traveled to Switzerland to end their lives between 2008 and 2012, paying the equivalent of about $10,800 each. “It’s clearly unethical to force dying Britons to travel abroad to die through a lack of safeguarded choice in this country,” said Sarah Wootton, chief executive of Dignity in Dying, one of Britain’s largest aid in dying organizations. Wootton said the Zurich Institute report “reinforced that there is a problem with the law in this country. But there is also a patient safety issue. We have no control over the law in Switzerland, but we can and should regulate and safeguard assisted dying in this country.”
According to the Zurich Institute report, a total of 611 people from 31 countries used aid in dying in Switzerland during the five-year period. The report was prominent in British media, including the BBC and the Telegraph, because Britain is once again engaged in a public debate about the legalization of aid in dying. Lord Falconer of Thoroton introduced Assisted Dying Bill [HL] 2014-15, which is modeled on Oregon’s Death with Dignity law, in the House of Lords this year. The bill’s second reading took place on July 18. A third reading will take place there before the bill moves to the House of Commons for three more readings on its way to a vote.
“The old philosophical certainties have collapsed in the face of the reality of needless suffering.”
Legalization has found a large number of prominent supporters in the UK, where 82% of the public supports aid in dying. South African Nobel laureate Desmond Tutu wrote at The Guardian: “I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying. I revere the sanctity of life – but not at any cost.” The long death of Nelson Mandela, former president of South Africa, affected Tutu’s view of aid in dying. He wrote, “What was done to Madiba was disgraceful. There was that occasion when Madiba was televised with political leaders, President Jacob Zuma and Cyril Ramaphosa. You could see Madiba was not fully there. He did not speak. He was not connecting. My friend was no longer himself. It was an affront to Madiba’s dignity.”
“The fact is that I have changed my mind,” Lord George Carey, former archbishop of Canterbury, explained a few days later in his support for the UK bill. “The old philosophical certainties have collapsed in the face of the reality of needless suffering.” The current Archbishop of Canterbury, Justin Welby, opposes the bill.
In 2013 physicist Stephen Hawking also stated support for legalization, telling the BBC that, “We should not take away the freedom of the individual to choose to die.” Hawking, who is 71 and was diagnosed with Lou Gehrig’s disease at the age of 21, said, “I think those who have a terminal illness and are in great pain should have the right to choose to end their lives and those that help them should be free from prosecution.”
Billionaire CEO Sir Richard Branson has also supported the bill, writing on his blog at Virgin.com, “An assisted-dying law would not result in more people dying, but in fewer people suffering,” and, “The House of Lords needs to look to Oregon in the U.S., where an assisted-dying law has worked for over 16 years.” Other prominent Britons who have spoken out for legalization include author Sir Terry Pratchett, actors Hugh Grant and Sir Patrick Stewart, and musician and reality TV stars Ozzie Osbourne and his wife Sharon.
The current round of challenges to UK law regarding aid in dying began in 2008 when Debbie Purdy, a woman with multiple sclerosis, sued the government for clarification of its 1961 Suicide Act. Her objective was to prevent her husband, Omar Puente, from being prosecuted should he help her to travel to Switzerland to make use of aid in dying there. Her fear was that when Puente returned to the UK after her death, he would be arrested; Purdy said that if the law stood, she would go to Switzerland on her own while she was still able. But Purdy won her case in a historic ruling that caused the Director of Public Prosecution to clarify the law. In early 2012, when new guidelines were issued, Purdy told The Telegraph, “I want to live for as long as I am able, actually. Life is not a b—-. I have so much to be grateful for. But I am in a lot of pain, there is a lot of suffering, and when the moment comes that I can no longer cope with all that, I want to be able to choose to end my life, knowing that the man I love will not go to prison for being there and helping me.”
The US and the UK are not the only countries where aid in dying is a prominent legal and political discussion. At his Medical Futility Blog, lawyer Thaddeus Pope reports that oral arguments in a case that challenges legal aid in dying, Lee Carter, et al. v. Attorney General of Canada, et al., will be heard on October 15 by the Supreme Court of Canada. The case challenges the country’s criminal code, under which assisted suicide or euthanasia are prosecutable, as unconstitutional.
Why is aid in dying legislation receiving such high profile support in the UK and other Western countries?* Why are very public conversations taking place around the world? I think there are several reasons. As Bob Douglas wrote at the Canberra Times last year when the newspaper conducted a round-table with an array of activists, politicians, doctors, ethicists and others, “Many Australians are concerned at what they see happening to their loved ones as they reach the end of their lives and want the confidence that when their time comes, they will be able to exercise choice in relation to assisted dying.”
As the population in Western countries ages, as elders watch their parents die in hospitals, homes and other care facilities, as the public becomes more aware of what Western medicine can and can’t do, public awareness of how we die is gaining ground. The experiences that many are having with their parents and spouses alarm them. The over-treatment, the operations on 80 year olds that seldom improve life, the fear of long and painful deaths are palpable and personal for many. “Every day I lose bits of myself, and it’s obvious that I am heading towards the state that all dementia patients eventually get to: not knowing who I am and requiring full-time care. I know as I write these words that within six months or nine months or twelve months, I, Gillian, will no longer be here. What is to be done with my carcass? It will be physically alive but there will be no one inside,” writes Bennett.
Another reason for the strength and prominence of the aid in dying movement is that the dire predictions for abuse of elders and the disabled haven’t come true. In places where aid in dying has been legal for some time–like Oregon (1994) and Washington state (2008), Switzerland (1998), Belgium (2002), and Luxembourg (2009)–years of thorough reporting have shown that use of aid in dying remains low and has complied with established guidelines. Much of the lack of abuse of aid in dying is due to the restricted nature of the laws that limit use to mentally competent patients who are terminally ill.**
In a recent article at the Journal of the American Medical Association, authors David Orentfischer, Thaddeus Pope (whose Medical Futility Blog is mentioned above) and Ben Rich write that the new climate regarding aid in dying is a result of the evolution of law surrounding end of life issues. They write that, until about forty years ago, it was thought by a majority of the population that “turning off a ventilator, stopping dialysis, or discontinuing artificial feeding was an act of killing that should be unlawful.” But various court cases and state legislative efforts have contributed to a change in how discontinuing medical treatments is viewed. “Recognition of the right to refuse life-sustaining care reflected a societal consensus that people should be able to decline treatment when they are suffering greatly,” the authors write.
During the 1970 and 80s, medical culture adopted a “do everything” course when treating any patient (cancer, degenerative disease, aging were going to be cured! the abilities of medicine were endless!), but as the general population has aged and patients and their families experienced treatments that could merely prolong lives without improving them–often with devastating effects on families, finances, and the well-being of patients, now unconscious or in pain), attitudes regarding medicine’s possibilities have changed. Society has come to focus on the quality, not quantity, of lives, however patients wish to define that quality. Advanced directives and other tools that allow patients to determine what medical treatments they (do and) don’t want are legal methods of stopping unwanted treatment. We’re now in a climate where many feel as though right to die legislation–laws that allow patients to remove unwanted and ineffective treatment–does not go far enough. Those who are seriously ill and suffering painful deaths but have no treatments to discontinue are looking for options.
An op-ed last month at MyCentralJersey.com highlights another concern that is changing public opinion: violent deaths. It was reported in August that Joan Bramhall, a Morris County clerk and “a New Jersey Republican fixture,” was shot by her husband before he shot himself. The murder-suicide was allegedly caused by John’s “enormous stress” over his wife’s dementia. “Where there is no Aid in Dying law, there are many violent suicides or botched attempts, and premature deaths of those who go it alone while they still can,” writes the author, Linda Kilcrease. The op-ed is an attempt to link a lack of options for those with terminal diseases to such violent deaths; it pins the need for legal aid in dying to desperation in the face of terror, helplessness and unstoppable decline. Fear of being just a body without a sentient mind. A bill to legalize aid in dying is currently pending in New Jersey.
As more elders see death as something they wish to control and as they come to value consciousness and capacity over longevity, the way people are dying is increasingly an important global conversation.
As more elders see death as something they wish to control and as they come to value consciousness and capacity over longevity, the way people are dying is increasingly an important global conversation. Violent and painful deaths are no longer considered a shameful weakness of afflicted individuals, but instead, the tragic and unnecessary outcome of a society in crisis. One that is not providing suffering citizens with enough options.
*By my use of Western I mean simply to note the type of health care systems in countries like Australia, Canada, the UK and the US. Whether health care is universal, national or a mix of private and national, medical research and technology are highly advanced. Even in countries where systems are considered non-profit, they are profit-driven (although, particularly in the US, access remains predominantly rationed according to class).
**A few cases in Belgium where patients were not terminally ill have attracted condemnation from opponents.
“The Patient Body” is a monthly column about the intersection of religion and medicine. Prior columns can be read here:
Ann Neumann is a Visiting Scholar at the Center for Religion and Media at New York University and contributing editor at The Revealer and Guernica magazine. Neumann‘s book about a good death, SITTING VIGIL, will be published by Beacon Press in 2015.