Blog Posts (30)
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.
December 9, 2016
On Thursday, December 9th, the largest survey of transgender people ever conducted was published by The National Center for Transgender Equality. The anonymous online survey had nearly 28,000 participants and found transgender people are twice as likely to live in poverty and three times more likely to be unemployed, according to an article in TIME … More The National Transgender Study is a Start – But More is Needed to Protect the Sexual Health of Transgender Teens
August 9, 2016
By Suzanne Minor The student used the phrase “my patient” six times during the brief patient interaction: “I don’t like my patients to not exercise.” “I like it when my patients eat healthy.” “I like it when my patients take their medications” and so on. Many students use this phrase occasionally, but this was striking. […]
May 17, 2016
By Mark Kuczewski On April 28, 2016, ten minutes before the NFL draft of college players was to begin, the Twitter account of Laremy Tunsil of the University of Mississippi, displayed a video of him wearing a gas mask and smoking from a bong. Mr. Tunsil was a talented prospect widely believed about to become […]
February 15, 2016
|Tarris Rosell, PhD, DMin|
What Kansans Need to Consider about House Bill No. 2150
(“The Kansas Death with Dignity Act”)How would you answer the following question if a Gallup pollster asked?When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?
As of mid-2015, nearly 7 out of 10 Americans polled answered that question, “Yes,” including 48% of those who attend church weekly
. The vast majority of Americans
, and 81% of young adults ages 18-34, currently favor physician-assisted suicide (PAS). Are they right? Could that large a majority possibly be mistaken?
Kansas legislators, like those in most states, have had opportunity to consider making PAS legal. It is already legal, with restrictions and regulations, in several other states, most notably Oregon, Montana, Vermont and Washington, and as of this year California. The addition of California now makes the question relevant to 1 in 10 of all Americans. The 1994 Oregon “Death with Dignity Act” served as the model in California, and also for Kansas House Bill No. 2150
, introduced last year. No hearing was held.
Governor Jerry Brown, a Catholic Christian, recently signed that CA legislation after much thought. Kansas Governor Brownback, also a Catholic, seems unlikely to sign such a bill even if it were to get out of committee and garner enough support to get through both chambers of the Kansas legislature. Is this good public policy? Or are we wrong-headed in the Heartland?
One of the influences credited with raising Gallup percentages especially among young people was the physician-aided death of 29-year old Brittany Maynard.
Brittany was living in California when diagnosed with glioblastoma multiforme, an aggressive form of terminal brain cancer. After much research and discussion, Brittany decided to move with her husband and mother to Oregon so as to qualify for that state's "death with dignity" protocol. After establishing residency and meeting with physicians, Brittany received her lethal prescription of drugs, to be used or not at the recipient's will. If taken as a means to end life, Oregon law
specifies that the drugs would need to be taken by Brittany's own hand. No one could do it for her.
Upon experiencing multiple seizures and cancer-related pain, Ms. Maynard decided to take a lethal dose of medications prescribed for this purpose, and thereby end her life on November 1, 2014. Close family and friends accompanied her at the time of departure. It was said to have been a peaceful death. Was it a "death with dignity?"
In a dialogue group I attend monthly, involving mostly physicians and chaplains, the Brittany Maynard case was discussed after viewing a six-minute YouTube video posted by Brittany
prior to her death. I have facilitated discussion of this case with groups of seminarians and medical students, also. Each time, I poll the participants on their opinion of PAS. Regardless of the group, percentages mirror those of Gallup. So should the majority rule in Kansas on this matter?
A hospice physician friend suggested that Brittany Maynard might have utilized palliative care in hospice. He acknowledged that this could not guarantee a death without pain and suffering, but that hospice care places value on a dying patient’s dignity. Indeed, most surely do, and most hospice deaths seem relatively peaceful. This is what I, and most bioethicists I know, advocate rather than expanding access to PAS. It may well be that the American majority has been misled, and that the better way to achieve death with dignity is to promote palliative and hospice care—especially for those groups who don’t have access to comprehensive care. But really, for all of us.Brittany and at least 859 other terminally ill patients in Oregon over the course of the last 15 years or so, have chosen a different route to their deaths
. Even in Oregon this remains a remote event, affecting only about 3 deaths in 1,000. I don’t condemn them nor their assisting physicians. Condemnation gets us nowhere good. I urge thoughtful and respectful ethics dialogue instead.
I advocate for better advance care planning, earlier end-of-life conversations between patients and their physicians, and more robust discussions about goals of care in advance of health crises. Increased public funding seems necessary so as to train more palliative care and hospice physicians. More research, and research funding, is needed for rigorous evaluation of the care currently being provided to dying patients.
This seems to me the better path to death with dignity, not only in the Heartland but everywhere.
How does it seem to you?
RESOURCES:Tarris Rosell, PhD, DMin, is the Rosemary Flanigan Chair at the Center for Practical Bioethics.
November 6, 2015
An interview with Philip Cawkwell, MS4, NYU School of Medicine, Rudin Fellow 2014-15 By: Katie Grogan, DMH, Associate Director, Master Scholars Program in Humanistic Medicine Assistance from Tamara Prevatt, Intern, Master Scholars Program in Humanistic Medicine The Rudin Fellowship in Medical Ethics and Humanities supports medical trainees at NYU School […]
August 17, 2015
ZDoggMD is something of a celebrity among physicians and medical students. He is the “Weird Al” Yankovic of the medical world – parody songwriter extraordinaire, satirist of medical culture and, at his best, a seriously funny human being. Whether lampooning hospital readmissions
or mocking anti-vaxxers
, his music videos bring humor to physicians’ challenges as well as their follies.
But listen closely and you will find that, beneath the humor, there often lies a serious message in ZDoggMD’s lyrics. The parodies aim to entertain healthcare workers, of course. But they also seek to educate. “Let’s just prevent readmissions/manage those chronic conditions/need time preparing the handoffs/move along to other clinicians,” he raps in “Readmission,” a parody of the R&B hit “Ignition (remix).” In the music video, ZDoggMD utters these lines in a hospital ward, wearing a lavish fur coat and sunglasses in the fashion of a rap musician. The routine is absurd – and funny – but the goal is more than mere entertainment. ZDoggMD’s light touch of humor warms us up for a serious conversation on a topic that is no laughing matter.
Ain’t the Way to Die
For his latest video, “Ain’t the Way to Die
” (a parody of Eminem’s “Love the Way You Lie”), ZDoggMD forgoes humor altogether – a first, according to his blog. Stripping away humor, the song takes a more direct approach to talking seriously about a topic that many of us prefer to avoid – death and dying. As ZDoggMD writes, “…we too often fail to have those difficult but crucial discussions about dying, and this failure leads to untold human suffering and billions in squandered resources. We are failing as caregivers, we are failing as family members, and we are failing as individuals – failing to simply have a conversation that ensures that we direct our own destiny. Plainly put, we need to talk about dying.”
Talking about dying is hard. It’s uncomfortable. As a medical student, I’ve become acutely aware of the discomfort. I feel it too, even as an observer. For all of us, the challenge is to communicate effectively about death and dying in spite of the discomfort, and in that regard ZDoggMD’s sentiment too often rings true: We are failing as caregivers, family members, and individuals to have these crucial conversation about the end of life.
Thankfully, there are people working to make these conversations a little easier. Caring Conversations
, a resource developed by the Center for Practical Bioethics
, for years has guided patients and their families through the process of advanced care planning. In its own way, ZDoggMD’s “Ain’t the Way to Die” can also facilitate these conversations, by melodically breaking the ice on death and dying: “Just gonna stand there and watch me burn/end of life and all my wishes go unheard/they just prolong me and don’t ask why/it’s not right because this ain’t the way to die, ain’t the way to die.”
The musical stylings may be off-putting to some, but for those who enjoy rap music – and those who can tolerate it – the lyrics of “Ain’t the Way to Die” succeed in broaching a wide range of end-of-life issues, from family discord to resuscitation. And this brings us to what is perhaps the greatest virtue of “Ain’t the Way to Die” – that the breadth of issues addressed in the short video makes the parody a conversation-starter for healthcare workers and patients alike.
All of us must find a way to communicate clearly in conversations about the end of life. “Ain’t the Way to Die” may help some of us find the words to do so. With that in mind, I encourage you to watch the video and share it with others. No matter one’s background or profession, each of us will one day face the end of life. Starting a conversation about how you want to face it gives you the best shot at doing it on your own terms. Written By Joel Burnett. Joel Burnett is an MD candidate at the University of Kansas School of Medicine.
February 7, 2015
Chronic Pain -- The Invisible Public Health Crises
A Call for Moral Leadership“I am an invisible man. No I am not a spook like those who haunted Edgar Allen Poe: Nor am I one of your Hollywood movie ectoplasms. I am a man of substance, of flesh and bone, fiber and liquids- and I might even be said to possess a mind. I am invisible, simply because people refuse to see me.”
- Ralph Ellison
Ralph Ellison’s famous novel, The Invisible Man
, starts with this passage, which also reminds me of the problem of chronic pain. The Institute of Medicine (IOM) report, Relieving Pain in America, documented the more than 100 million Americans (almost 1 in 3 and surely someone whom you know and love) suffers from chronic pain, at an economic cost of $6 billion and an incalculable psychological cost. We named pain as a “disease” because of its profound effects on the brain and its interference with multiple domains of the quality of life of sufferers. The committee identified chronic pain as a public health problem, given the sheer numbers affected, and the opportunities to intervene to prevent acute pain from becoming chronic pain. However, the report is now almost four years old, and it is fair to say has not really moved the needle in doing what we implored in the IOM report—“changing the way in which pain is judged, managed and perceived.” Why is that?
Because pain is subjective -- and therefore difficult to measure by the usual medical tests -- it is often doubted. As someone once said, my pain is real, your pain is in doubt. Also, we live in profound cultural ambivalence about pain. Cultural icons such as Julius Caesar and Albert Schweitzer have been quoted as saying that pain is worse than death, but there is also an ethos of “no pain, no gain.” Medical interventions, particularly powerful opioid drugs such as morphine and oxycodone, although essential to manage acute and persistent pain, come with a cost of many side effects and may induce psychological dependence in some. Persons in pain and their doctors fear addiction, although we do not truly know the risk of addiction in persons taking opioids who have not abused recreational or illicit drugs. For these and other reasons, on an individual and societal level, we prefer to ignore the problem of chronic pain
, unless confronted by it in our personal lives.
So how do we advance the moral imperative to address pain and suffering in contemporary medical practice, as required by our ethical codes and professional oaths? How do we bring the invisible suffering of so many to light and work to alleviate it? I think we commit ourselves to five big goals:
1. We advocate for more and better science to understand the underlying neuroscience of pain production and modulation. This requires advocacy at the NIH and other federal agencies to fund worthy science related to pain mechanisms and clinical trials of pain treatments.
2. We advocate for more and better drug development, including the creation of abuse deterrent opioid formulations and novel non-opioid based analgesics. This will require advocacy for effective public-private partnerships between the pharmaceutical industry, academia and federal agencies.
3. We advocate and demand better education of health care professionals to live up to their obligations to be competent and to attend to pain and suffering in their patients. We also advocate for better public education so that persons suffering with chronic pain understand that this is a disease, and not subject to quick fixes.
4. We advocate and demand better policy solutions to provide sustainable and patient-centric interdisciplinary pain treatment programs that truly address patient and provider needs.
5. Finally, we need effective collaboration on a shared policy agenda between pain specialists and substance abuse specialists to advocate for comprehensive, rehabilitation-focused care for chronic pain
, and greater access to substance abuse treatment for those persons who have a dual diagnosis of chronic pain and addiction.
These are my thoughts. What do you think?Richard Payne, MDJohn B. Francis Chair, Bioethics
Center for Practical Bioethics
Esther Colliflower Professor of Medicine and Divinty
June 23, 2014
On May 6, 2014, Barron Lerner, MD, PhD, kicked off the Lerner Lectureship series with a talk that explored the evolution of medical ethics through the lens of his father's and his own practice of medicine. Dr. Lerner's father, Phillip I. Lerner, MD, was "a revered clinician, teacher and researcher who always put his patients […]
August 28, 2013
How Future Doctors Think
Flanigan Lecture Explores How Medical Students Make Sense of Their World
What kind of physician do you want? Do you want someone who, out of respect for your autonomy, explains treatment options but makes no recommendations, leaving the decision up to you? Or do you want something more?
If you want something more, the research conducted by Felicia Cohn, Ph.D., who presented the 19th Annual Rosemary Flanigan Lecture on July 30, 2013, underscores the importance of knowing how your doctor thinks and helping him or her to understand your story. Patterns in Their Stories
When Dr. Cohn taught medical ethics at the University of California-Irvine School of Medicine, she noticed patterns in the stories medical students shared concerning conflicts they encountered between their personal values and professional obligations and what they did about them. Her colleague at UCI, Humanities Director Johanna Shapiro, wondered if there might be a way to analyze and identify themes from these stories as told in 299 papers Dr. Cohn had collected.
“The themes of the students’ narratives really did fall quite neatly into six categories,” said Dr. Cohn.
• Restitution (38%) - Appealed to a moral norm or ethical principle.
• Compromise (16%) – Conceded core values.
• Journey (16%) – Grew through experience.
• Witnessing (13%) – Felt empathy but stood by and watched.
• Resistance (9%) – Rejected professional ethics in favor of personal views
• No Problem (2%) – Never experienced any conflict.
“I thought the papers would tell a lot more stories about witnessing and compromise, which were the type of stories that the students mostly shared in class,” said Dr. Cohn. “But it turned out that restitution – appeal to principle – was the most common story they told. And more often than not the principle the students appealed to was autonomy. In other words, it’s okay for me to do this because it’s what the patient said he wants.”Autonomy or Guidance?
Dr. Cohn explained that this emphasis on autonomy in modern medical culture has important implications for both healthcare professionals and their patients.
“If physicians really think what a patient is doing is wrong but feel that respecting autonomy takes precedence, they’re going to be spending a lot of time doing things that they think are wrong. Then they’re miserable and we go and ask them to be nice to patients. I can’t help but think that’s where a lot of the dissatisfaction and even burnout from healthcare professionals comes from.”
Conversely, for the patient who wants more than options from their physician – who wants their physician to consider how their illness and treatment will integrate into their life and make honest recommendations based on that – then the doctor who tells a restitution story probably isn’t the doctor for them.
Learn more at http://www.PracticalBioethics.org
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