Choosing death with dignity
Many Americans are well-versed in how best to protect their interests and assets after death. But understanding the choices they have about the manner in which they die is a different matter. Dr. Charles Hamlin, a retired orthopedic surgeon, would like to change that imbalance.
On Wednesday, Sept. 11, he delivered a talk called "Mortality, Morality and Honor: The End-Of-Life Paradigm" at Grace Episcopal Church in Vineyard Haven.
Dr. Hamlin is devoting his second career to what he terms "compassionate choices," specifically, the right of terminally ill citizens to choose how, where, and when they die. He is a board member and advocate for Compassion and Choice, a national organization devoted to helping people, including the terminally ill, prepare for death. "My mantra is 'Grow older and die young, as late as possible: plan on it and plan for it'," he said in a recent conversation.
Dr. Hamlin comes across as a humanist, not an apologist on the politically incendiary "right to die" issue. Oregon, Vermont, and Washington State have "right to die" laws on the books, while Massachusetts voters narrowly defeated a version of the law in the last general election.
Dr. Hamlin said his current work is more a product of his personal experience with dying parents than a result of his extensive medical experience. A New Haven, Conn., native, Dr. Hamlin has a glittering resumé packed with degrees from the best schools, professional honors, and career assignments in the top medical institutions.
Compassion and Choices began operations in 2005, but its root organizations extend back to 1980 when Derek Humphry, author of 1992 New York Times bestseller "Final Exit," founded the Hemlock Society with an eye to providing choices for the dying. The name has antecedents in ancient Greece around the story that the philosopher Socrates took his life by drinking poisonous hemlock rather than accepting banishment from his country.
After several iterations and mergers, the nonprofit Compassion and Choices emerged as an organization on Jan. 1, 2005.
Compassion and Choices says it is "committed to helping everyone have the best death possible." It offers free counseling, planning resources, referrals, and guidance.
"For over thirty years we have reduced people's suffering and given them some control in their final days — even when injury or illness takes their voice," the organization says on its website compassionandchoices.org. "We are experts in what it takes to die well."
The organization focuses principally on public education, legislative work, and collecting data on death choice experiences. Dr. Hamlin noted that opponents of right to die warn of a "slippery slope" syndrome, where rights of the terminally ill might be abused by other segments of society.
"The law has been in effect in Oregon for 17 years and there is absolutely no evidence that rates of death have risen," he said. "In fact we are seeing statistics that indicate a reverse prejudice. Wealthy Americans are making right to die provisions at a rate far higher than the poor and uninsured."
Choosing an end of life option is a multi-step process with "oversight and safeguards every step of the way," Dr. Hamlin said.
"My career as an orthopedic surgeon was not an introduction to my interest in end of life issues," he said. "That interest came, I think, from ideas formed by two examples in my personal life. I saw my mom suffer a series of strokes and decline into a vegetative state. My dad suffered a painful death from terminal cancer."
Dr. Hamlin said he came to believe that the emotional and physically painful cost of prolonging a life in a terminal condition was unacceptably high for the individual and for families and that lack of choice negated the opportunity for us to die with dignity and grace. "I believe it is the right of every citizen to reject those measures," he said.
Offering the choice of how and when to die involves moral and civil rights issues, Dr. Hamlin said. "This has become a civil rights issue, particularly with elders," he said. "Most studies show that if people have conversations with their families, doctors and pastors, their stress level goes down and the quality of their remaining life is higher. More people are able to die at home surrounded by loved ones, hearing the words, 'I love you.'
"We are not interested in death, we are interested in comforting the dying and in choices: if you are terminal, you are able to choose the time and place of your passing. We are not talking about euthanasia or doctor-assisted death or suicide. The idea of suicide is anathema to me. Suicide is the act of the mentally ill. Very different from someone who is terminally ill and desires to ease that final approach."
The most common option for choosing death is a self-administered dose of the barbiturate Secanol, a prescription drug. Dr. Hamlin said that only about half of terminally ill people who have the drug available actually use it. But, he said, research shows that having the option available reduces stress and improves the quality of their remaining life.
"Our societal perspective on death is a factor in the right to die issue," he said. "As doctors we are trained to preserve life. Doctors believe they can cure anything. As a group, we have a 'no one dies on my watch' perspective. Actually, there is little data on how our society thinks about death."
Dr. Hamlin admits he is stymied by one disease. "I have no idea what to do about Alzheimer's sufferers who have lost the capacity to choose," he said. "As a nation we spend $215 billion a year on Alzheimer's and our kids don't have hot lunches. Baby boomers are turning 65 at a rate of one every eight seconds. Currently 30 per cent of Medicare dollars are spent on the last year of life. You can't assess the value of human life in dollars but it's a tough situation."
He advises those with the capacity to choose, "Let us know what you want and we'll honor it, but don't avoid the conversation."