Bishop Tutu’s Plea Prompts Personal Meditation on Assisted Suicide

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 85^th 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.”

No Safe Harbor

Bishop Tutu

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.

A Moral Right

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. 

Ethics 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. 

Learn more at http://practicalbioethics.org

Death with Dignity?

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:

• http://kslegislature.org/li/b2015_16/measures/documents/hb2150_00_0000.pdf
• http://www.gallup.com/poll/183425/support-doctor-assisted-suicide.aspx
• http://www.gallup.com/poll/171704/seven-americans-back-euthanasia.aspx
• https://www.youtube.com/watch?v=1lHXH0Zb2QI
• http://thebrittanyfund.org/category/videos/
• http://www.washingtontimes.com/news/2014/oct/31/oregon-womans-assisted-suicide-decision-sparks-deb/?page=all
• http://www.wsj.com/articles/a-doctor-assisted-disaster-for-medicine-1439853118
• https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf
• http://www.deathwithdignity.org/access-acts

Tarris Rosell, PhD, DMin, is the Rosemary Flanigan Chair at the Center for Practical Bioethics.

Rapping about Dying

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.

Conversation Starter

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.

Chronic Pain -- The Invisible Public Health Crises

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, MD
John B. Francis Chair, Bioethics
Center for Practical Bioethics

Esther Colliflower Professor of Medicine and Divinty
Duke University

How Future Doctors Think

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

Medical Interpreters and Patient Communications

Medical interpreters help patients, doctors communicate 

Kirsti Marohn and Stephanie Dickrell 
USA Today 
December 9, 2012

Health care regulations require medical providers who receive federal funding to provide interpreters. There's also growing research on the effects of bad communication on patient safety, said Izabel Arocha, executive director of the International Medical Interpreters Association.

Link to Podcast: The Ethics of Cultural Competency, Michael Brannigan, PhD, The Bioethics Channel, May 4, 2012

Paradoxes in advance care planning

More on studies indicating physician reluctance to talk about end of life. This from our friends at Pallimed.

L2

We've expressed some AD skepticism on the blog before (e.g. where's the data they do anything), and I sometimes wonder when reading research like this that patients view ADs as some sort of abstraction and don't really understand why us clinicans care about them so much.

Which is not to say that most physicians do care about them much.

Part of what I'm saying is that for us as doctors to tell patients they should consider an AD we also need to be talking with them about their expected future, and that the AD is less important to patient care than that actual discussion about what's going to happen, or what will happen if consolidation chemotherapy for your acute leukemia fails.

Link: Paradoxes in advance care planning

Glenn McGee named as John B. Francis Chair in Bioethics

Glenn McGee, PhD, will assume the John B. Francis Chair in Bioethics on January 1, 2010. He follows John D. Lantos, MD. The chair was established in 2005 through a $3 million endowment from the Francis Family Foundation to the Center for Practical Bioethics.

The Francis Chair was designed for an individual with national stature in bioethics, a proven track record in teaching and research and proven leadership qualities in fostering excellence in collaboration. In addition to his research, Dr. McGee will engage in public outreach, and consult with policymakers on medical ethics issues.

“Dr. McGee brings enormous expertise, experience and energy to his new role as the John B. Francis Chair in Bioethics,” says Myra Christopher, president and CEO of the Center. Dr. McGee is known for a pragmatic approach to bioethics, making him a perfect fit for the Center for Practical Bioethics.”

Links:

Francis Chair Announcement

Bio brief, Glenn McGee, PhD

Podcast, Introducing: the new John B. Francis Chair in Bioethics, The Bioethics Channel, 11 minutes 39 seconds

What's MORAL about mammogram policy?

Rosemary Flanigan

November 20, 2009

There’s value and worth under discussion here—and that value and worth are justified by a utilitarian calculus: balancing harms over benefits. But there is no objective “harm” or “benefit” in utilitarianism. When it comes to mammograms, women in their 40’s might well determine “worth” and “value” differently.

To increase our awareness of how much of our lives are shot through with moral considerations—and how much we should be open to questioning the justification for those judgments or policies or habits that stream along with us—is a hallmark of ethical reflection.

I think of the bundles of institutional “habits” or policies that make up a healthcare organization. We assume that 98% of them can be justified—and we’d never get any work done if we were reviewing them all the time.

But that “ethical component” is integral to the “character” of the entire institution.

What should count in rating doctors?

Rosemary Flanigan
November 11, 2009

The Center’s 25th anniversary is being celebrated with lectures by the program staff and last night was Dr. Gary Pettett, a fellow at the Center and a neonatologist at Children’s Mercy, who talked on “Professionalism—What has Trust (not Truth) Got to do With It?”

It was a delightful evening because Gary had us in the audience write down the 3 most valuable traits we wanted to find in our physician. Then he talked about four different kinds of physician-patient relationships and how there is no “one size fits all” but different encounters between the two call forth different relationships between them (paternalistic, interpretive, deliberative, etc.)

Then he asked us for our “most valuable traits” and dutifully recorded them. Following that, he listed what physicians might expect in a quality physician: advising yearly checkups for prostate, mammograms, daily dose of aspirin, cautions against smoking and weight gain, etc.

QUESTION: which set of traits is easier to rate, evaluate? But is this what ought to count?

A friend of mine introduced policy governance to her hospital board (board members are in charge of ends, not means) and she reminded me how often she remembered advice given to her: Don’t choose ends that are easy to rate just because they are easy. Choose proper ends and work over evaluation criteria to try to rate their achievement.

Every professional deserves the experience that Gary offered us last night. Lorell will tell you when you can hear it on one of our podcasts.

COMMENTS?

Picking a Fight on Normative Ethics

Rosemary Flanigan
October 30, 2009

I have read the final article in the HEC Forum, the one by Tristram Engelhardt, Jr. who seriously questions whether or not one can define what a clinical ethicist is and does.

Maybe I’m just rarin’ to pick a fight, but I was disturbed by his paper.

He says, “The existence of clinical ethicists and ethics consultation is the result of a set of developments and commitments rooted in Enlightenment assumptions about the possibility of discovering through rational analysis and argument a canonical morality or at least a normative moral consensus. The difficulty is that these Enlightenment assumptions have proven false. Secular sound rational argument cannot resolve the important moral controversies we face, nor is there a non-controversial understanding of when consensus and by whom would be normative and for what. . .Ethics consultation is itself a matter for disagreement.”

I am not directly addressing CEC’s, but I am very concerned that his remarks be misread by ethics committee members, the education of whom has been a principal work of the Center during our 25 year history.

Is normative ethics possible for our committees to achieve? Yes, within parameters of the institution whether it be the mission and vision statement or the Ethical and Religious Directives for Catholic institutions or whatever states the purpose of the institution. Those, broadly speaking, express the presuppositions, assumptions, values on which the institution rests.

Argument (in a committee’s case consult) starts from there, and though the documents may express the aim and purpose broadly, there would be enough substance that we can craft our arguments to show the rationality of our responses within that institutional “ethic.”

I shall get off my high horse, but I don’t want the difficulties for credentialing clinical ethics consultants to erode the positive contributions made in clinical ethics by our committees.

Does this make sense?

Death and the Colostomy Bag

Rosemary Flanigan

October 26, 2009

There is a short but thoughtful piece in the new Hastings Center Report describing two clinical ethics consultants’ answering a pager on “Saturday Morning in the Clinic.”

The husband of a 7l-year old patient who had been in the surgical intensive care unit for eleven days following treatment for a small bowel obstruction faced a dilemma. His wife had told him—and all the members of the care team—that she’d “rather die than have a colostomy bag.” But she had become septic, requiring surgery on her previously resected intestine—likely resulting an an ostomy to save her life. What should he do?

The surgeon had told him that colostomies are sometimes reversible. So he had signed the consent form. But when the consult team spoke with the surgeon, the surgeon said that the patient, because of her condition, might have to wait a year before reversal could be considered.

And there was the rush and the young nurse’s reassuring the husband by saying, “It’s just a colostomy. She’ll die without it. Wouldn’t she rather live?”

And gradually the husband realized that no, she would not rather live.

But surgical preparations were being made at that moment and one member of the team stayed with the husband while the other fled to the operating theatre to say that consent had been revoked. The woman died two days later.

The consult team, reflecting afterwards on the harrowing Saturday morning event, realized that it was moral discernment that took over their lives during those hours: what they “needed to know” about the patient, her husband, her fears, his contradictory responses, that helped them through the process.

“[W]e found that our engagement in moral discernment was well served by our being continually alert to the changing conditions and circumstances of that Saturday morning in the clinic. . . .”

Preparation for case consults can never be pursued too aggressively in our ethics committee education. Do you agree?

Link: Saturday Morning in the Clinic, The Hastings Center Report, September/October 2009

CPR Rates among Elderly and Minorities

Rosemary Flanigan
Distinguished Fellow
Center for Practical Bioethics

October 16, 2009

A July 2, 2009 article in the New England Journal of Medicine suggests NO improvement in elderly survival following CPR from ’92-’05; in-hospital deaths preceded by CPR increased, and the proportion of survivors discharged home after undergoing CPR decreased.

And the article associates higher rates of CPR but lower rates of survival after CPR to race. That is most interesting, I think. Justice denied over the centuries is most apparent today in the lack of trust in the healthcare system shown by blacks—shown here in their expectations of CPR as has been shown elsewhere in their low rate of advance directive planning. Talk about complexity!

The journal article ends: “This study provides information useful to older patients and their clinicians in their decision about whether to choose to be resuscitated, since the proportion of elderly patients who choose resuscitation is directly related to the probability of survival that is presented to these patients. Our findings also provide a stimulus to understand the association between race and survival, with the goals of not only eliminating racial disparities in the quality of medical care but also understanding factors associated with the incidence of CPR and the rate of survival after CPR for patients of all races.”

What if an ethics committee invited some emergency room professionals to a short meeting in which this article is discussed? What if the committee invited some GPs to the same meeting?

Facts don’t always change moral assumptions, but sometimes they do.

Reflecting on Moral Habits

Rosemary Flanigan

October 14, 2009

This is teaching week for me—to medical students working on their Bioethics M.A. and to nursing ethics committee members. With the students, I want to show them how their moral sense develops and how we often argue with ourselves over those conclusions—or certainly with others about their conclusions. And that arguing is “doing” ethics if it is so framed and if it is good reasoning (thus a nose-to-nose look at logical fallacies).

My hope is that they know there is no judgment that cannot be challenged. We may still cling to it following the ethical reflection, but we’ll know why.

But with the nurses (and less time), I’m making them reflect on moral habits. After all, each of us is bundled habits (or bundles of bundled habits), and here again, we need to take some time to reflect on whether or not we are becoming what we hope to become.

With all the new docs entering the profession presuming on the aid of ethics committees and all the nurses knowing they are expected to be reflective in their profession, what a marvelous future ethics committees have—if they are constantly upgrading themselves. But that leads me to credentialing, and I’m not ready to take that subject on –not yet.

So give a whoop and holler that you’re part of the movement.

Dutch Pediatricians Part Two

Rosemary Flanigan
Distinguished Fellow
Center for Practical Bioethics

Isn’t much of the moral distress suffered by professionals in healthcare today (besides not having enough time to do what you know you ought to do) the conflict of over the “right” thing to do—with patients, families, and fellow professionals.

But consider, as Hilde Lindemann tries to tell us, how we use language. Unless we can get to the level of another’s meaning, we are not helping them, no matter how many words we use.

“Let us remove the feeding tube from Granny” can be heard in so many different ways, and yet we often start our sentences there instead of asking questions of Granny and the family that may lead up to our prescription.

But if I read John Lantos correctly, what the Dutch pediatricians do—and the language they use in doing it—indicates something deeper than language, some reality that deters us from acting in the same way, no matter how we speak of it.

The “something out there” (killing infants if they fall within the Protocol’s limits) is understood or “meant” differently to Dutch and American pediatricians. The Dutchman justifies it; the American can’t. And no amount of “discussion” will lead to consensus.

But that attempt ought to be made, I think, before we agree to disagree—and hand the patient over to another provider.

Links:

Dutch pediatricians and letting babies die, Practical Bioethics, October 2

Autonomy, Beneficence, and Gezelligheid: Lessons in Moral Theory from the Dutch, Hilde Lindemann, The Hastings Center Report

Dutch Pediatricians and Letting Babies Die

Rosemary Flanigan

Distinguished Fellow

Center for Practical Bioethics

October 2, 2009

I have just read through the new Hastings Center Report and I am troubled over Hilde Lindemann's article, Autonomy, Beneficence, and Gezelligheid: Lessons in Moral Theory from the Dutch.

For years now, I've always started off "ethics" workshops by distinguishing between morality and ethics. I see morality as the "stuff" with which ethics deals. Without moral conclusions, I would have nothing with which to "do" my ethical analysis. And the sources of that morality are many-parents, neighborhoods, school, church/temple/meeting hall, etc.

The article deals with Dutch pediatricians who end the lives of babies who 1) have no chance of survival for more than a few days, even on life support; 2) those on life support who might survive after intensive treatment but would always suffer horribly; and 3) those who do not need life support and "whose suffering is severe, sustained, and cannot be alleviated."

Dutch pediatricians make no distinction between direct killing and letting babies die; they need no such distinction. I am still trying to get inside their sense of morality before I can make an intelligent comment.

HELP!!

The Distinction Between Morality and Ethics

Rosemary Flanigan

September 22, 2009

The distinction between morality and ethics is not at all clear in some of our minds, and the distinction between clinical practice and ethics/morality is likewise foggy. I am much more prone to see almost every conscious activity (except for tying my shoes) to have a moral component—and wherever there is morality, there can be ethical reflection—whether or not there is conflict.

Terry Rosell asked, “But what if the patient/family objected to the cardiologist’s request for a consult?” and the author said, “In many ways, the notion that any one individual involved in a patient’s situation may be given the ability to deny another to seek assistance to address that other’s own ethical concerns flies in the face of now 30-plus years of recognition that clinical ethical matters are not the sole domain of any one group.”

And he goes on to say that whether or not consent must be sought prior to the initiation of a clinical ethical situation is clearly answered NO, it is still possible that consent might be needed subsequently.

It’s very possible that I’m getting “loose as a goose” conscience-wise, but I think of countless “consults” taking place in hospital hallways, nooks, and crannies across the nation—concerning patients, families, and fellow professionals.

What is the “right and good thing to do” is at stake here, so I argue that we’re doing ethics. And preserving privacy to the extent that we can suffices for me. I don’t want practitioners to be mute because of their scrupulous sense of propriety.

How LOOSE is my GOOSE????

Ethics Consultation: what is at stake and for whom?

Rosemary Flanigan
September 18, 2009

The recent issue of Cambridge Quarterly for Healthcare Ethics arrived at home and the entire issue is devoted to reviewing and assessing ethics consultation. One of the articles asks, “Is Consent Necessary for Ethics Consultation?” and it shows that consults may be called for participants other than the patient.

Thus one must ask what is at stake and for whom.

An example given is the cardiologist who is the attending physician for an elderly gentleman for whom he has provided care for over a decade. All along, the patient has insisted that he not end up debilitated and in a nursing home, but here it is, the fifth hospitalization in the past 18 months and the old gentleman is on mechanical ventilation, is in acute renal failure, has a variety of infections and a prolonged altered mental status.

The cardiologist has talked to the family and they have agreed that life support be withdrawn and their father allowed to die. It was at this point that the cardiologist requested an ethics consultation—not for the purpose of reviewing the case or checking the hospital’s DNR policies/terminal weans but whether or not this the “right” time to stop.

If this were your ethics committee, would you invite the family into the consult?

An Ethical Grounding in Social Justice

Rosemary Flanigan

August 28, 2009

I think too many people see the Patient Self-Determination Act as an expression of autonomy—which it is—but we are social beings, too, and we do not live like ice cubes in an ice cube tray.

So there is always tension in our decisions: good for me/good for others.

So I shall argue that if, in the next 15-20 years, we can chip away at the gross individualism that marks our present culture, if we can adjust our expectations of what I think healthcare should do for me and broaden my understanding to include others (what are the implications for others of my insisting on a feeding tube in my last weeks/months of life?) then I think we are on the way.

And who can help do this? Every community service, every religious body, every schoolroom, wherever people are together trying to fulfill a task.

We need to make explicit reference to our duties and responsibilities to others.

Too idealistic??? Let me know.

Teach an Integrated Ethics Class

Rosemary Flanigan

August 21, 2009

Thinking back on our years of preparing ethics committees to integrate ethics into every aspect of healthcare delivery in the institution leads me to suggest what Hans Uffelmann proposed years ago:

Sensitize (What’s the Problem?),

Analyze (What are the Facts?),

Synthesize (What ought I/we Do?)

and Actualize (“Can I/we Behave Morally?)

In other words, instill the understanding that there is no “purely factual” element in the entire curriculum! It is all fraught with ethical implications! And much of it is open to argument. (How do you justify placing one value over another? How do you justify proceeding with such obviously risky consequences?)

But over and beyond it all, an integrated ethics class will be successful when the students remember and follow the example of their mentor! She could be a brilliant “presenter” but if her “being a good nurse” doesn’t come across, the endeavor will be easily forgotten.

So constantly raising the ethical threshold by her example will win the day.