January 11, 2017
|By Myra Christopher|
I worked late Tuesday night and was listening to NPR as I always do during my short commute home when I heard that, in celebration of his 85th birthday, Bishop Desmond Tutu announced that he supports physician-assisted suicide and “prays that politicians, lawmakers and religious leaders have the courage to support the choices that terminally ill citizens make in departing Mother Earth with dignity and love.” I was stunned.
At age 30, I decided to spend my life working to improve end-of-life care and that the way that I would do that would be by “doing ethics.” I would spend my life arguing that the seriously ill and dying have an inherent right to a “dignified death.” This year I will be 70, and I have had a long and interesting career. Over the past 40 years, the issues of euthanasia and physician-assisted suicide have been what I considered as recurring distractions from what I have thought to be really important, i.e., advancing palliative care. Bishop Tutu’s comments, however, cannot and should not be considered by any one as simply a “distraction.” I believe they are a “game-changer.”
In the late 1990s, I directed Community-State Partnerships to Improve End-of-Life Care
, an $11.25m Robert Wood Johnson (RWJ) Foundation grant award program. At about the same time, Jack Kevorkian – or Dr. Death as he came to be known – came on to the public scene. At a national conference, I was asked what I thought of Dr. Kevorkian, and I said without hesitating that I thought he was a murderer and should be imprisoned.
Envisioning Other Options
After the conference, a communication officer from the RWJ Foundation asked me if I knew the data regarding public views on physician-assisted suicide. I said that, of course, I did – 50% of Americans were for it and 50% were against it. She said, “You realize that when you made the statement you did that half the audience turned you off,” and then asked me if I could imagine saying something like, “Physician-assisted suicide is something good people disagree about, but what we can all agree upon is that we must do a better job of caring for those who are seriously ill and dying so that they don’t see suicide as their only option.”
That statement made good sense to me and has served me well over the years. To clarify my personal view, I always add that I am against the “legalization” of assisted suicide but would NEVER pass moral judgment on a caring committed physician or loving family member who assisted a patient or loved one to die. Furthermore, I know that it happens all over the United States every day. Years ago, an article titled “It’s Over Debbie” was published in JAMA (Journal of the American Medical Society) in which a resident anonymously reported having euthanized a young woman in agonal pain dying of a terminal gynecological cancer. I got four calls, two of them from healthcare professionals in Kansas City, telling me that the caller was sure the event had occurred in their own hospital.
Personal Choice and the Slippery Slope
I have shared in private conversations, however, that in certain situations, I would personally choose to end my own life and expect others to help me to do so if I were incapable of acting on my own behalf. I recognize the logical inconsistency of my thoughts and have felt hypocritical from time to time. But because so many people in the U.S. are not insured and do not have access to healthcare, especially good end-of-life care, and because we know without question that certain populations, e.g., people of color and those in lower socio-economic situations, receive less care, worse care and have poorer outcomes, I have felt that legalizing physician-assisted suicide could potentially make these people even more vulnerable…that it was just too risky. Even though the data from Oregon, the first state in the U.S. to legalize physician-assisted suicide, has not proven that to be true, my fear has been the “slippery slope,” i.e., if we allow competent people to make this choice, are we then far from deciding the same should be true for those who cannot make decisions for themselves. I still do not believe that concern is unfounded.
The Netherlands, the first country to legalize euthanasia, now allows others to make decisions about ending the lives of those who are unable to be self-determining. Furthermore, years ago, I debated this issue with Derek Humphry, Founder of the Hemlock Society, and when I asked him if he would support euthanizing people who had never been able to express their wishes, he said something like “not now.”
Ironically, in the early 2000s, two nurses in upstate New York who published an online newspaper called The North Country Gazette, decided that I was the leader of the euthanasia movement in the U.S. For several months, they published a “front-page” article about euthanasia and included my name in the headline. I wasn’t aware of it until I began to receive letters from children asking me why I wanted to kill their grandmother and got a couple of calls from national organizations with whom the Center was working asking me to clarify our position on euthanasia. (I should point out that the Center does not now nor has it ever had an official position on euthanasia. Members of the Center’s board and staff are not of one mind about this issue, and I suspect never will be.)
After hand-printing a few letters to children saying that I was not sure why they thought I would ever want to harm their grandmother, we learned the source of the perception. I honestly will never know why I became the target of this series. I do know, however, that it was heart-breaking to me that for nearly two years, if you Googled “euthanasia,” my name was the first thing to pop-up.
Neither my ambivalence (or lack of intellectual clarity) nor my efforts to claim the moral high ground – or even what I thought to be clever communication strategies – had provided me a safe harbor or a pass from this debate.
Now on Tuesday night, Bishop Desmond Tutu, a person who for years I have considered a global moral leader and personal hero, spoke with conviction and confidence about euthanasia as a moral right, an entitlement.
is not about black and white. In my experience, it is clearly about trying to deal with “shades of gray.” But, from a philosophical perspective, respect for human life is not negotiable and that has been a sticking point for me. Tuesday night Bishop Tutu said, “As a Christian, I believe in the sanctity of life and that death is a part of life. I hope that when the time comes I am treated with compassion and allowed to pass on to the next phase of life’s journey in the manner of my choice.” I do too.
April 14, 2016
by Craig Klugman, Ph.D.
April 16 is National Healthcare Decisions Day (NHDD), a day dedicated to advance care planning—having conversations about end of life care and perhaps completing advance directives.…
February 13, 2016
Founding a company that encourages informed end-of-life decision-making and conversations, while certainly not unique, is uncommon. Founding it as a relatively healthy 30-something without a medical background may put me in the category of not only uncommon but unusual.
And yet, given my conversations with professionals who deal with late-in-life and end-of-life issues, I was inspired to do so. Those conversations led me to create PlanBeyond
, a new online site that helps older adults and caregivers get better educated about end-of-life medical, legal, and financial issues.
In speaking with a diverse group of professionals – from palliative care doctors, hospice care nurses to estate liquidators, estate planning lawyers and even funeral directors – I was surprised that my conversations really coalesced around one core issue: Many of the burdens they see with family members could be significantly lightened if people were just a little more proactive about exploring their final wishes and did a better job of communicating them.
Sad But Not Unusual
Consider the story that a nurse from Illinois, Anne, shared with me. A father of two was in the intensive care unit for weeks after suffering a severe stroke. His prognosis was poor, but his wife had no idea if she should keep his feeding tube in or when to consider withdrawing it. Because they were both relatively young, neither had spoken to the other about this possibility nor had either of them completed a living will. And so here she was, a mother of two young children, relatively young herself, having to face one of the most important decisions in this man’s life…without any guidance.
Or, consider the story of a funeral director from Georgia, John, who recounted a story of a widow planning the burial of her husband of over fifty years. She was desperate to keep costs as low as possible. Neither she nor her family had the resources to cover the cost of a standard funeral with burial. And yet, she wanted to do right by her husband. She was torn and guilt-stricken by the two options presented – cremation at a lower cost or borrowing to pay for a more expensive conventional burial. What would her deceased husband want? The widow had never spoken with her husband about his wishes, so it was up to her to make this very personal and very difficult decision.
Inspired to Help
I wish I could say these stories are rare, but I am discovering they aren’t. In my brief experience in this new venture I am having confirmed over and over again how important it is to explore and share a whole host of issues. With just a little research, planning and open communication about our final wishes, we can change what are often heart-wrenching decisions into ones that we accept and are at peace with.
It’s why I was inspired to found a company that’s all about this issue, and why I encourage anyone I speak with to think just a little bit about their final weeks of life and what they really want done with them.
Blog Editor’s Note:
Writer Laura Troyani is the founder and editor of PlanBeyond, an online site for getting common legal, financial, health and end-of-life planning issues in order and stored in one place. An increasing number of groups, many started by younger people, share Laura’s passion. Examples include My Directives and Annie Presley and Christy Howard’s new book, Read This…When I’m Dead.
The Center welcomes Ms. Troyani’s contribution to the Center’s blog, emphasizing the importance of making wishes known before a crisis occurs; however, publication of her article should not be interpreted as the Center’s endorsement of PlanBeyond site contents. For recommended documents to make your healthcare wishes known, the Center encourages readers to download free copies of Caring Conversations from the Center’s website.
December 10, 2015
|Jan Evans, CPA|
My husband Dave’s parents, Robert and Lydia, are exceptional people. They were born in 1920 and 1921, and grew up in untraditional households in Oklahoma. Both of Dave’s grandfathers were killed at young ages in work-related accidents, and his mother’s mother died young in childbirth. Bob and Lydia were high school and college sweethearts. They married on Bob’s graduation day from the Naval Midshipmen’s School in New York City before he went overseas during World War II.
After returning from his service, they lived in Great Bend, Kansas, before moving to Lawrence in the mid-1970s as his engineering business was expanding. They were very happily married for more than 71 years. I have known them for 33 years, and been their daughter-in-law for 30 of them. They have always been accomplished, strong, resilient and wonderful people: well-read, interested in world and local events, ready for travel and adventure.
Ahead of His Time
They definitely were planners and always had a direction moving forward in life. And their first priority was always love of family. Consideration for their family was so great that, before many people ever heard of advance care planning, they made sure that their children knew what their wishes were regarding medical treatment at the end of their lives. Years ago, they talked to us about their wishes so that we would know what they wanted (and didn’t want) and so they could be confident that we would be able to fulfill those wishes.
Last summer, my father-in-law died peacefully at age 94 surrounded by his beloved family on August 22 at his home in Lawrence, Kansas. He wanted to die at home, not in a hospital. However, his final illness progressed very quickly, and it appeared that he would not be able to return home as he wanted. Once again, even in a much-weakened state, he demonstrated his strength as a person. After a day or so in the hospital, the end was inevitable, but he held on, determined to be strong enough to make the trip back home where he would be comfortable in a hospital bed with family around, listening to the music he loved, the Royals games and the conversations of many visitors. It was truly a remarkable end-of-life journey for a very remarkable man.
But it didn’t end there. Bob’s family always knew the places and people that were most important to him. He was very interested in his family history, and he passed that interest on to his children. A few weeks after his death in mid-October, his wife, children and their spouses took his ashes on a journey to important places in his life as a tribute to him and so we could all say good-bye.
We traveled to Great Bend, Kansas, where he had established his business over 50 years ago, raised his children, participated in civic activities, and was active in his church. We also traveled to Oklahoma – stopping in Oklahoma City at the cemetery where his family is buried. His children offered various tributes to him, like hitting golf balls sprinkled with his ashes into the stream where his family had enjoyed many afternoons of summer picnics. He was moving forward again.
It gave the entire family a sense of calmness and peace to know exactly what he wanted at the end of his life. We were able to spend our time together then and on our trip celebrating his remarkable life.
Jan Evans, CPA joined the Center for Practical Bioethics in 2011 as Fund Accountant.
November 4, 2014
by Ellen Fox, MD
It’s been five years since the media firestorm around “death panels” – a term coined by Sarah Palin to refer to a provision in Obamacare that would have authorized Medicare payments for advance care planning discussions.…