End-of-Life Matters: Cultural Representations through the Entertainment Arts

The 2012 National Academies of Sciences Rosenthal Lecture will be on December 12.  It will focus on how the language of the entertainment arts informs our cultural understanding of end-of-life care. 

Through the screening of clips from the film Beginners and television medical dramas, and a live theatrical performance reading from Sophocles’ Philoctetes, the Rosenthal Lecture panelists will explore the various ways the entertainment arts can provide a platform for an engaging and compelling conversation about end-of-life. The panel will approach the conversation through the lens of the patient, the family, the provider, and the community.

Moderator

• Neal Baer, M.D., Executive Producer, CBS Television; Clinical Professor of Preventive Medicine, University of Southern California

Panelists

• Jay Clayton, Ph.D., Professor and Director, Curb Center for Art, Enterprise and Public Policy, Vanderbilt University


• Bryan Doerries, Artistic Director, Outside the Wire


• Kathy Foley, M.D., Professor of Neurology, Weill Medical College of Cornell University; Medical Director, International Palliative Care Initiative, Open Society Foundation

Closing Remarks

• Harvey V. Fineberg, M.D., Ph.D., President, Institute of Medicine

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Minnesota v. Smith: Does Advance Directive Break Chain of Causation?

The Minnesota Supreme Court has agreed to hear a drunken driver's claim that he was not responsible for the death of a
93-year-old woman killed in a 2010 crash because her
"do-not-resuscitate" order kept her from potentially life-saving medical
care.



Eddie Cortez Smith, 34, was convicted by a Ramsey County District
Court jury in June 2011 of criminal vehicular homicide in the death of
Edith Schouveller of St. Paul on March 28, 2010. He was sentenced to 10
years in prison, the maximum term allowed by state law.  His conviction was affirmed by the Minnesota Court of Appeals in
September.



The case turns on the argument that Schouveller's advance directive with the do-not-resuscitate order was a "superseding event." When she developed pneumonia, doctors determined she needed a small tube inserted into her lungs to
aid her breathing. But court documents show she only wanted antibiotics,
and no breathing tube if it did not restore her to her preferred
quality of life.  She died 13 days after the crash. At trial, one of her doctors said
Shouveller might have lived with a breathing tube.  (Star Tribune)



Things do not look good for Smith.  Criminal defendants regularly make this causation argument.  And they regularly lose.

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Role of Minnesota Guardians in End of Life Decision-Making

Join us for breakfast and CLE on Friday, December 21 for "The Role of Guardians in End of Life Decision-Making: Reflections on the Tschumy Decision and its Implications for Guardians and Health Care Providers."  The expert panel will be

• The Honorable Jay Quam, Hennepin County District Court


• Rebecca Egge Moos, Bassford Remele


• Robert McLeod, Lindquist & Vennum PLLP


• Charles W. Singer, Attorney at Law  

Guardians play extremely important roles within our legal system, and are granted wide ranging authority under Minnesota law, including the legal authority to provide or withhold consent for medical care for an individual under guardianship. How far should this authority extend? 



The important question of whether a guardian’s authority extends to end-of-life decisions was recently considered in In re the Guardianship of Tschumy, where the court held that a guardian does not have the power to make a decision to terminate life support. The decision, which is now on appeal, presents important and difficult questions for attorneys, guardians and health care providers alike. 

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Physician Sanctioned for Not Completing End-of-Life Care CME

West Virginia, like New Jersey and many other states, requires that physicians complete a certain number of CME credits in end-of-life care.  The West Virginia Board of Medicine recently sanctioned Michael W. Brown for falsely representing, in 2002, that he had completed this CME requirement.  



Late last month, the Kanawha County Circuit Court reversed and vacated the Board's order.  The Court found that Dr. Brown believed in good faith that his coursework satisfied the then-existing requirements.  Still, it is nice to see this CME requirement is being enforced.

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POLST - DNAR without Consent

I strongly support POLST.  I have been actively engaged with its implementation in both Delaware and Minnesota.  And I am presently preparing a lengthy report to aid the continuing nationwide roll-out.  

But I was surprised to see that some POLST programs and forms explicitly permit unilateral clinician orders.  This form from Vermont, for example, permits the clinician to complete a DNAR order on a patient's POLST without either patient or surrogate consent, in the case of "futility."  

I am not saying that I am necessarily opposed to this development.  Many states have taken the opportunity, when introducing new statutes and regulations authorizing POLST, to fix some other limitations and problems in health care decisions law.  I was simply surprised, because so much of the defense of POLST, in response to attacks from certain Catholic officials, focuses so heavily on its voluntary nature.          

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KCET Show on End-of-Life Medicine

Los Angeles KCET will post a video, today, from last night's broadcast of SoCal Connected.  Three segments are of interest:

• UpFront: One woman makes an end-of-life decision many people dread.


• Your Turn to Care: L.A. Times columnist Steve Lopez reflects with his readers on the hardships of having a parent in decline.


• In the Studio: Dr. Ken Murray, a retired family
  physician, talks to Val about how doctors choose to approach the end of
  life differently than most people.

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Another New Review of Liverpool Care Pathway

The Liverpool Care Pathway has come under intense scrutiny.  Several lawsuits have already been filed over
patients put on the pathway without a proper explanation or their
families being involved.  (BBC News)



Care and Support Minister Norman Lamb said he would appoint an independent chair to report back in the new year.  The new review will pool together data gathered from existing
reviews which are being undertaken by the Association Palliative
Medicine, Dying Matters and the national End of Life Care Strategy.

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Carina Melchior: The Girl Who Refused to Die

A teenage girl in a coma after a catastrophic car crash came round just as doctors were about to declare her brain dead.  Carina Melchior had had life support withdrawn on the advice of medics and was being prepared for organ donation.  But to the astonishment of staff at the Aarhus Hospital, in Denmark, the 19-year-old suddenly opened her eyes and started moving her legs. (Daily Telegraph; Copenhagen Post)





She is now making a good recovery at a rehabilitation centre and is able to walk, talk and even ride her horse.  Her family is now suing the hospital for damages, claiming that doctors had been desperate to harvest her body parts.



The case has sparked a public debate in Denmark about donations and end-of-life treatments, with registered donors withdrawing consent in fear of doctors acting too quickly.  The Danish government is drawing up new guidelines to prevent doctors from making preparations to remove organs until the patient is officially declared clinically dead.



The story was covered in a documentary called "The Girl Who Refused to Die."

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"Way to Go" - New BBC Assisted Suicide Comedy

US comedy writer Bob Kushell has created a black comedy for BBC3 about a group of men forced into launching an assisted suicide business.  (Broadcast Now; Radio Times)

Way To Go will center on twenty-something Scott, who is moved by his neighbor’s request to die, but is also grappling with a predatory female boss, a split from his girlfriend, and a need for cash to pay off his brother Joey’s gambling debts.  Together with Joey and friend Cozzo, Scott stumbles across the solution of illegally purchasing an assisted-suicide machine. It’s not a simple process, however, and the trio’s inadequacies provide some of the most darkly comic moments.

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Edwarda O'Bara, World's Longest Coma Patient, Dies

Edwarda O'Bara, the world's longest coma patient, who had been called
the "Sleeping Snow White" during the 42 years she remained comatose, has died
at the age of 59.

In 1970, when Edwarda was 16, she suddenly fell ill and slipped into a
diabetic coma.  As she lay in her bed, she turned to her mother, and pleaded with her to
stay near.  “Promise me you won't leave me,” the teen begged her mother.  The mother promised, "I would never
leave you, darling."  (Daily Mail)

As part of her care, Edwarda’s body was turned every two hours to keep
away bedsores.  Edwarda's mother, and
later her sister, would also lovingly braid Edwarda’s grey hairs, and suck the
mucus from her throat to allow her to breath. 
They mixed baby food, milk, eggs, orange juice, Mazola oil, brewer's
yeast and a piece of white bread into a blender and then a wire mesh strainer,
pouring the concoction into Edwarda's feeding tube every two hours, day and
night.  Family and friends would also
visit her, playing music and reading to the woman. Dr. Wayne Dyer later wrote a book about the family, A Promise Is A Promise: An Almost
Unbelievable Story of a Mother’s Unconditional Love and What It Can Teach Us.  (O'Bara family website)

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Delaware Repeals MOLST

Most state are moving progressively toward clearer and stronger authority for their POLST programs.  Oddly, a few days ago, the Director of the Delaware DHSS Division of Public Health formally asked "all healthcare providers to please discontinue use of the STATE OF DELAWARE MOLST form."

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Not Dead Yet and the NYLS End-of-Life Symposium

Not
Dead Yet reports that last Friday, three
disability activists in New York City went to the Justice Action Center at the
NY Law School to distribute flyers protesting the way in which a symposium on “Freedom of Choice at the End of Life” handled
“issues of concern” that people with disabilities have with proponents of
assisted suicide (and other “end of life” issues).

As I
wrote privately to one of the activists, Nadina Laspina, I was pleased
that these activists were able to come up to the conference area deep inside
New York Law School.  Their presence, their conversations, and the NDY
blogging about the symposium definitely heightened awareness of the disability
perspective on end-of-life medical treatment issues. 

I first met Nadina, in April 2010, in New Brunswick, New Jersey, when I was arguing before the Appellate Division in the Betancourt case.  The strong NDY presence in the courtroom that morning surely sent as strong a message to the three-judge panel as any brief or attorney advocacy.

While I value the voice of NDY, I am not sure that its criticism of the NYLS is completely accurate and fair.  First,
Alicia Ouellette made an informed, fair, and even passionate argument for more
inclusiveness and circumspection.  Here is an excerpt from a review of her book, Bioethics and Disability -

Ouellette contends that people with disabilities have been medicalized and marginalized by bioethics practice. Although perhaps overstating the connection between bioethics and clinical medicine, she provides powerful descriptions of how some bioethics commentary and consultation have been infected by misinformation and disability bias. She explains the importance to bioethics of listening to the voices of people with disabilities, unearthing prejudice, and pursuing inclusive justice. To put the call of the book in Ouellette's own words: “A disability-conscious bioethics will incorporate important but overlooked knowledge, evince sensitivity to the values, concerns, and interests of members of the disability community, acknowledge the biases and alliances that affect various parties' perspectives, and focus on principles of importance to disability work that are sometimes overlooked in bioethics -- nondiscrimination, full and effective participation and inclusion of people with disabilities, respect for difference, and accessibility.”

It is worth noting that not only Alicia but also her institution, Albany Law School, does quite a lot for disability rights.  For the last 29 years law students enrolled in the disability rights clinic at Albany Law School have represented individuals with disabilities on an array of legal issues.

Finally, the potentially questionable
session title “special people” is readily explained by the fact that the panel
discussed not only the disabled but also another vulnerable populations,
prisoners.   

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Tonight on PBS: "Honoring Choices: Giving Thanks"

For those in Minnesota, tune in tonight at 8:00 p.m., to watch Honoring Choices: Giving Thanks.



In this final documentary of the series, Jearlyn and Jevetta Steele share why Thanksgiving is their preferred time to give the gift of a conversation with family and loved ones about end-of-life choices; why those close to you are your best advocates when you can't speak for yourself; and why it's important to participate in our healthcare decisions.

This documentary will be rebroadcast on Friday at 7:00 on TPT 2.1.  You can also visit the Honoring Choices Minnesota website to watch any of the documentaries in the series. 

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Compassion & Choices 2012 Annual Report

Compassion & Choices has published the Fall 2012 edition of its magazine.  This issue contains C&C's 2012 annual report.  Few organizations do (or have done) as much to protect and promote safety and autonomy in end-of-life care.

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Emergency Medicine on Futile Treatment

The Australasian College for Emergency Medicine is having a good discussion about futile interventions at its annual scientific meeting.  The focus appears to be more on physician-caused, rather than on surrogate-caused, overtreatment at the end of life.





Calls to End Futile Care by tvnportal

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Man Claims "Doctors Murdered My Wife"

Alan Booth says that doctors forced his wife, Sue, to die, by withdrawing food and water for two days, without the family's consent.  Although Sue had battled breast cancer for 7 years, she'd been told her cancer was under control.  (Jersey News; Jersey Evening Post)  Booth says, "The doctors murdered my wife. She didn't die naturally, she didn't die of cancer. She was put on a Pathway which is designed to kill. That was professed to be 'care'."  



The Health Minister says she cannot comment on individual cases - but she does say the Liverpool Care Pathway regime would never be used without the consent of family members. 

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Rasouli Daughter on CTV News

Hassan Rasouli's daughter discussed her father's case on CTV News (video clip) this morning.  

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The Most Difficult Ethical Dilemma Facing Science Today

The Guardian newspaper recently interviewed Britain's most celebrated scientist, David Attenborough.  Here is the final question and answer: 



What is the most difficult ethical dilemma facing science today?

DA:  How far do you go to preserve individual human life?



HT:  Ken Hillman, who just wrote in the American Journal of Respiratory & Critical Care Medicine:  "At the end of the day, it is our profession, through our societies and as individual critical care physicians, that needs to initiate and be involved in this discourse.  Not to dictate what should be done but to inform people of the limitations of the specialty and the inevitability of dying.  I believe this challenge is one of the more pressing and important that critical care medicine faces."

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Rasouli Case Coverage in Toronto Life Magazine

Just in time for upcoming oral
arguments in the Supreme
Court of Canada on December 10:  

Nicholas Hune-Brown has a
major piece in the December 2012 issue of Toronto Life magazine.  The article provides
extensive background on the Hassan Rasouli case.

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Advance Directives Should Address fMRI Results

At least for the foreseeable future, there will be uncertainty over whether some PVS patients are in a cognitive state more like locked-in syndrome.  (National Post)



Consequently, it might be prudent for individuals to address this situation in their advance directives.  For example: "I do/do not want to be sustained with life support if I am diagnosed in a PVS, even if fMRI shows I have some responsiveness."  Of course, if the fMRI data shows that the patient has decision making capacity, then the patient could revoke the advance directive.  

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Physicians, Not Surrogates, to Blame for Non-Beneficial Overtreatment

Another interesting result from the new Medscape survey of top ethical dilemmas.  Too many patients are just not getting the truth about how bad things really are.



I was pleased to hear, this weekend in NYC, more about New York's Palliative Care Information Act (in effect since Feb. 2011) and about similar legislation now in the NY pipeline.  While there are some intractable futility disputes, most inappropriate, non-beneficial end-of-life medicine is clinician-driven, not surrogate-driven.  

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National Healthcare Decisions Day 2013

Yesterday, marks five months to the sixth annual National Healthcare Decisions Day.

Many of you will have family gathered next week for Thanksgiving, and I encourage you to take the opportunity to have a discussion about your advance care planning.  Then, reflect on the discussion and use your experience to guide the way you bring up the topic with others. 

NHDD has a great video to get the conversation started.  The Canadian “Speak Up” Campaign (with their own National Advance Care Planning Day on April 16) also has a great video.   

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2013 Canadian Bioethics Society Annual Conference

The 2013 Canadian Bioethics Society Annual Conference will be in Banff from May 29 to June 1, 2013.  Abstracts are due at the end of this month.

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Physicians' Top Ethical Dilemmas

Medscape has just published its 2012 Ethics Report: Physicians' Top Ethical Dilemmas, based on survey responses from 24,000 US physicians across 25 specialties.  Here is the first question:

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Symposium: Freedom of Choice at the End of Life

I am looking forward to participating, tomorrow, in New York Law School's symposium, Freedom of Choice at the End of Life.  I have posted my slides here.

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Thanksgiving & Advance Care Planning

Thanksgiving is a classic time to do some advance care planning. When family and friends gather around a table and share a holiday meal, they also get a chance to share how much they care for one another. The holidays are also a great time to talk with your family and those you love about your healthcare decisions before a serious illness. When the discussion is framed in terms of family love, comfort and dignity, a difficult topic is much easier to talk about.



Aging with Dignity suggests two things you can do during this week before Thanksgiving:



1) Bring it up: Think about opportunities you may have next week to talk about health care preferences with your parents, adult children, siblings, in-laws, extended family and close friends. Make sure you have copies of Five Wishes and our Next Steps guide ready. If you want to get started early, think about purchasing and emailing uses of our Five Wishes Online to family and friends. Everyone can fill out their own Five Wishes on their computer, and when you gather together everyone will be ready to talk about it. We know of a family that actually did this during halftime of a Thanksgiving football game! 



2) Help others: Consider opportunities you may have to encourage others to plan ahead of a health crisis. You may be able to share this message with colleagues, patients, members of your faith community or civic club. Or, you may be in a position to share this message with the entire community - and offer your organization as a resource where they can get a copy of Five Wishes. 

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Death: A Self-portrait

Tomorrow, the Wellcome Collection opens a new exhibition titled "Death" A Self-portrait."  



This exhibition showcases some 300 works from a unique collection devoted to the iconography of death and our complex and contradictory attitudes towards it. Here is a sample print and a description from the catalog:



Assembled by Richard Harris, a former antique print dealer based in Chicago, the collection is spectacularly diverse, including art works, historical artefacts, scientific specimens and ephemera from across the world. Rare prints by Rembrandt, Dürer and Goya will be displayed alongside anatomical drawings, war art and antique metamorphic postcards; human remains will be juxtaposed with Renaissance vanitas paintings and twentieth century installations celebrating Mexico’s Day of the Dead. From a group of ancient Incan skulls, to a spectacular chandelier made of 3000 plaster-cast bones by British artist Jodie Carey, this singular collection, by turns disturbing, macabre and moving, opens a window upon our enduring desire to make peace with death.

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The Medical Profession's Expectation of Deference

This phrase from Graeme Archer, a few days ago, in the Telegraph, resonated with me:  "What doesn’t help is the attitude of the medical profession, which retains an expectation of deference, as though we haven’t seen scandal after scandal about patient care . . . ."

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Vegetative Patients Can Communicate

Scott Routley suffered a severe
brain injury in a car accident 12 years ago.  He had been diagnosed with a persistent vegetative state.  But Professor Adrian Owen
at the Brain and Mind Institute, University of Western Ontario (formerly at Cambridge) recently
concluded that Scott was clearly
not vegetative.  (BBC News)  

Dr. Owen
asked Scott questions while having his brain activity scanned in an fMRI
machine.  "Scott has been able to show he has a conscious, thinking
mind. We have scanned him several times and his pattern of brain activity shows
he is clearly choosing to answer our questions. We believe he knows who and
where he is."  It's the first time that an uncommunicative, severely
brain-injured patient has been able to give answers clinically relevant to
their care.

Tonight, on BBC One, Panorama will broadcast a one-hour special
follows a group of severely brain injured patients and reveals the
revolutionary efforts made to help them communicate with their families and the
outside world.

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End of Life Care Planning In Minnesota: Issues and Complications

Tomorrow, at the University of Minnesota - Duluth, Barbara
Elliot will present "End of Life Care Planning
in Minnesota: Issues and Complications"

Dr. Elliot will speak
about various complications regarding end-of-life planning in the
Northland.  In particular, she will focus upon, POLST (Physician Orders
for Life-Sustaining Treatment), DNR (Do Not Resuscitate) orders, Advance
Directives and Proxy Consent. 

Barbara
Elliott is Professor of Family Medicine on the Duluth campus
where she teaches ethics, the health issues of family violence, and
spirituality and health care. She is also trained and works as a hospital chaplain.

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The Honorable John "Jack" Louis Coffey

The judge for whom I clerked on the U.S. Court of Appeals for the Seventh Circuit during the 1999-2000 term, the Honorable John "Jack" Louis Coffey, died on Saturday.  Here is an excerpt from his obituary.



Jack and his nine siblings earned degrees from Marquette University. He served for the U.S. Navy during World War II and then matriculated to Marquette University Law School, which led to his lifelong career in the legal profession. 



Jack's 58 years on the bench began with elected judicial positions on the Milwaukee Municipal Court, Circuit Court and Wisconsin Supreme Court. In 1982 Jack was nominated by President Reagan to the United States Court of Appeals for the Seventh Circuit, where he would serve until his retirement this past January. 

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University of Minnesota Futility Policy

Today marks the one-year anniversary of the University of Minnesota Medical Center's adoption of a non-beneficial treatment policy.  



I understand that UMMC had four cases in the policy's first year.

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Minnesota Mini Bioethics Academy 2012

This Monday, from  6:30 to 8:30 p.m., is the first of three sessions in the University of Minnesota's "Mini Bioethics Academy 2012."  The sessions will be in the St. Paul Student Center’s Cherrywood Room, 2017 Buford Avenue, St. Paul, MN 55108. 





November 12

“Genes for a Better Life: Why Leave Your Happiness to Chance?”

John Song, MD, MPH, MAT, Associate Professor, Center for Bioethics; and Department of Medicine, University of Minnesota Medical School



Knowledge of the human genome and one’s own genes brings great promise to one’s life and to society. We currently use gene testing for a host of potentially beneficial reasons, such as carrier screening, pre-implantation genetic diagnosis, pre-symptomatic testing for estimating the risk of developing adult-onset cancers and Alzheimer's disease, human ancestry projects, and forensic testing. Gene testing has already improved the lives of many, from the beginning of life to the end. So, what’s the fuss? By discussing clips from the movies “My Sister’s Keeper” and “Gattaca,” we’ll explore some the moral issues that arise from genetic technologies and whether learning more about our genes is a good thing for individuals and for society.



November 19

"Who Decides? The Ethics of Clinical Medicine"

Daniel Groll, PhD, Assistant Professor, Department of Philosophy

Carleton College; Affiliate Faculty, Center for Bioethics, University of Minnesota



It is common place for patients to have the right to make decisions about their own care. But why is this so? And what can healthcare providers do when the patient is unable to make a decision, has made a decision on the basis of faulty information, or seems to be making a poor decision? Using an episode of House as our jumping off point, we'll explore these questions in the hopes of gaining some understanding of the basic principles that (ought to) guide decision-making in medicine.



November 26

"Influence of Politics and Culture on U.S. Organ Transplantation"

Maryam Valapour, MD, MPP, FCCP, Assistant Professor, Center for Bioethics; and Department of Medicine, Division of Pulmonary and Critical Care Medicine, University of Minnesota Medical School

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Joni and Friends

Inspiring and uplifting.  This made my weekend.

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Jacobs v. CORE - Settled for over $1 Million

In
2009, I described a unique lawsuit: Michael
Jacobs v. The Center for Organ Recovery & Education; Jonathan Coleman; The
Hamot Medical Center Of The City Of Erie, Pennsylvania; William R. Phelps,
M.D.; Peter Pahapill, M.D.; Jeffrey Bednarski, M.D.; Roberto Lopez, M.D.; Ruy
Cruz, M.D.; Emergycare, Inc., NO. 1:09-CV-00048 (W.D. Pa. filed Mar. 4,
2009).

This is a case in
which a high school student suffered a serious head injury while skiing. His
parents allege all sorts of medical malpractice from many different providers.
But most notably, they allege that Defendants deceived and coerced them into
consenting to a DNR order and to organ donation. They also allege that the
organ harvesting was done before their son's death.

This week, the parties
filed a petition for the court to approve their settlement agreement.  I
will post the relevant documents.  Basically, on almost the eve of trial,
the settling defendants CORE and Hamot Medical Center have agreed to pay
plaintiffs $1,200,000 to settle all claims.  

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Death by Joy

DEATH BY JOY is
an escorted journey to the next world. Your guide is Mary, a quirky, selfless,
funny, and irrepressible fifty-five-year-old who is told she will be dead in
weeks without aggressive medical intervention.

But
Mary chooses to forgo that route. The physical has a time and place; what
matters more to Mary is that essence—call it awareness, spirit, soul, inner
being—that she believes carries into the life beyond.  And
so Mary embarks on a clear-headed quest for the true meaning of healing. Her
joyful and startling discoveries can change profoundly your understanding of
life, healing, and death.

This
is a provocative look at a passionate journey; a tale of warmth, laughter, and
music; a sharing in the fascinating visions of Mary’s travels across the
“borderline.” It is an embracement of death, not steeped in sadness for what is
to be lost but illuminated with the joy of what can be found.

Yet
the path of epic journeys is seldom straight or free of struggle, a truth Mary
experiences as she confronts the chilling reality of her shocking past.  Ultimately, DEATH BY JOY is a film about a great
paradox: Can Mary survive long enough to be healed before she dies?

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Elder Law Mediation (Dec. 18 in Minneapolis)

I plan to attend this two-hour CLE in Minneapolis on December 18:  Elder Law Mediation.  Here is the description:

There is growing interest in the field of elder law mediation. When disputes arise involving elders’ living situation, medical care, assistance with activities of daily living, and/or finances, it is often in everyone’s interest to resolve these issues without resort to the courts. On the other hand, for the elders involved, their lives, rights, and well-being are at stake. How can elders’ interests be protected, family and caregiver relationships be preserved, and communications be improved, while conserving elders’ resources? 

Elder law mediation may provide a welcome alternative to elders, families, and care providers struggling with these issues. In this session, we will describe the growing need for elder law mediation, the crucial training, expertise and resources that elder law mediators must have, and important ways to ensure that the well-being of elders involved in elder law mediation is protected.

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Legal, Medical, and Ethical Issues in Minnesota End-of-Life Care

I am pleased with the symposium that I organized today:  Legal, Medical, and Ethical Issues in Minnesota End-of-Life Care.  



The 200 participants and I were lucky to have such expert, energetic, and delightful presenters on topics such as POLST, surrogate decisions, guardianship. the unbefriended, medical futility, and aid-in-dying.  Those presenters included:

• Bud Hammes, Ph.D., Director, Medical Humanities and Respecting Choices Gundersen Lutheran Health System; Chair, National POLST Paradigm Task Force; Vice President, International Society of Advance Care Planning and End of Life Care


• Edward Ratner, M.D., Associate Professor of Medicine, University of Minnesota; Medical Director, Heartland Home Health Care and Hospice


• Marshall Kapp, JD, M.P.H., Florida State


• Stanley Terman, Ph.D., M.D., Medical and Executive Director, Caring Advocates


• Barbara Noah, JD, Western New England University


• Maxine Harrington, JD, Texas Wesleyan School of Law


• Adam Candeub, JD, Michigan State University College of Law


• Stanley Terman, Ph.D., M.D., Medical and Executive Director, Caring Advocates


• Honorable Jay Quam, JD, Presiding Judge, Hennepin County Probate/Mental Health Court


• Robert McLeod, JD, Partner, Lindquist & Vennum


• Andrea Palumbo, JD, Gores Law Office


• Anita Raymond, M.S.W., LISW, CMC, Volunteers of America of Minnesota


• Rebecca Volpe, Ph.D., Assistant Professor, Penn State College of Medicine; Director, Clinical Ethics Consultation Service, Penn State Hershey Medical Center


• Victor Sandler, M.D., Medical Director, Fairview Home Care & Hospice; Co-Chair, Bioethics Committee, University of Minnesota Medical Center


• Kathleen Meyerle, JD, Legal Department, Mayo Clinic


• Suzy Scheller, JD, Scheller Legal Solutions LLC.


• Kathryn Tucker, JD, Director of Legal Affairs, Compassion & Choices; Adjunct Professor of Law, Loyola Law School/Los Angeles

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Top 10 Legal Developments in Bioethics

I have posted an MP3 recording of the 2012 ASBH Annual Meeting 90-minute panel session, Top 10 Legal Developments in Bioethics.  



It was a pleasure to work on this panel with co-panelists Art Derse, Amy Campbell, and Alicia Ouellette.  My 10 minute update on medical futility begins at about the one hour mark.

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Slow Codes, Show Codes, and No-codes in Neonatal Intensive Care

Children’s Mercy Bioethics will have its second in a series of live webinar debates about hot topics in pediatric bioethics, on Thursday, Nov. 29, from 12-1, Central Time:  Slow Codes, Show Codes, and No-codes in Neonatal Intensive Care.



Every NICU or PICU doctor has faced the following situation:  A baby is dying, slowly, of multisystem organ failure.  The family insists that everything be done and will not agree to a DNR order.  The doctors, nurses, chaplains and social workers have tried explaining the situation.  The disagreement has become intractable.



In such situations, doctors usually respond in one of three ways: 

1. They sometimes continue discussions and try to convince the patient or family to agree to a DNR order


2. They sometimes accede to the family wishes and do the CPR, even though they find it reprehensible to do so


3. They sometimes refuse to do CPR, explain this to the patient or family and, if disagreement persists, seek legal sanction to override family’s choices.

CMH Bioethics has brought together two national experts in neonatal bioethics to discuss these situations, and debate whether it is ever appropriate to consider a fourth option - do not write a DNR order, but do not do CPR as vigorously or for as long as usual.

• William Meadow, MD, PhD, Professor of Pediatrics and Assistant Director of the MacLean Center for Clinical Medical Ethics at The University of Chicago, who argues that, in some situations, there is a fourth possible response – one that allows for less than vigorous resuscitation – a “slow code” – without any explicit authorization from the family.


• Annie Janvier, MD, PhD, Associate Professor of Pediatrics and Co-director of Pediatric Clinical Ethics at the University of Montreal, who argues that “…all resuscitations need to be taken seriously and performed in a consistent fashion every time…. performances and rituals are best left to priests, ministers and mullahs.”

They will debate and discuss different approaches to these difficult cases.  Director John Lantos, MD, will moderate the debate.  The webinar will be free, but you must register here.  

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Consent to Treatment: A Practical Guide, Fourth Edition

I just noticed that the Fourth Edition of Consent to Treatment: A Practical Guide is out.



Described as "the Bible" on consent by health lawyers and risk managers, the 1500-page Consent to Treatment has been cited in over 90 law review articles and 20 court decisions, including a landmark ruling by the U.S. Supreme Court regarding end-of-life choice-making.

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End-of-Life Care Decisions: Importance of Reviewing Systems and Limitations After 2 Recent North American Cases

In the November 2012 Mayo Clinic Proceedings, anesthesiologists Christopher Burkle and Jeffre Benson provide a nice overview of present systems existing in the United States and Canada for resolving end-of-life decisions, including the difficulty in defining medical futility, the role of medical ethics committees, and controversies involving surrogate decision making.  They use the recent Barnes and Maraachli cases to highlight the difficulties surrounding medical futility conflicts. Best of all, the authors cite me about 50 times in their seven page article.

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The Darkening Veil of "Do Everything"

On the theme of vague and bad language (see my immediate prior post on DNACPR), I truly enjoyed Feudtner and Morrison's piece, The Darkening Veil of "Do Everything" in the Archives of Pediatric & Adolescent Medicine.  They colorfully illustrate why "saying that we are going to 'do everything' is dangerous nonsense."

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DNACPR

In its End-of-Life Guidance, the British General Medical Council uses the term "DNACPR."  The term is used widely across the United Kingdom.  But one does not see this term much in the United States. But healthcare providers might consider its adoption.  

First, the "A" correctly indicates that a patient with this order will not necessarily be deprived of cardiopulmonary resuscitation.  For many hospital inpatients, it is unlikely that CPR would be effective even if it were attempted.  Instead, a patient with this order is only being saved from an "attempt" at CPR.  Many U.S. providers already designate orders as "DNAR" instead of "DNR" for this reason.

Second, the "CPR" correctly indicates that a patient with this order is still supposed to get interventions other than CPR.  Unfortunately, "DNAR" is often interpreted to mean that the patient does not get other treatments such as fluids and antibiotics.  The term "resuscitation" is vague.  The more narrow and precise "DNACPR" term better indicates the narrow and precise scope of the order.

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Tracey v. Cambridge University Hospitals NHS Foundation Trust

Over the next 10 days, London High Court Judge Dame Nicola Davies will hear evidence from witnesses regarding the circumstances surrounding a hospital's resuscitation policy.  David Tracey alleges that two Do Not Resuscitate (DNR) orders were included in the notes of his late wife, Janet, without her knowledge or consent.  But Cambridge University Hospitals NHS Foundation Trust says that a doctor did seek her informed consent.  (BBC News)

After the factual dispute is resolved, a full judicial hearing is listed for February, which will seek to clarify whether there is a legal duty to inform patients with capacity whether a DNR has been placed on their notes and whether they have any right to be consulted about it.  

Merry Varney, of Leigh day & Co, who represents the Tracey family, said:  "This case underlines the importance of a transparent, accessible and consistent policy regarding a patient's right to know when a decision not to resuscitate them is made and to know how their views are taken into account and, where necessary, how to challenge a decision they disagree with."

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Proposals to strengthen the NHS Constitution

The UK NHS has published Proposals to strengthen the NHS Constitution.  Comments and public consultation on the 60-page document are open is 28 January 2013.  



One of the key proposed changes makes it clearer that patients, their families and carers should be fully involved in all discussions and decisions about their end-of-life care and treatment.  Responses to the consultation will feed into a revised version of the NHS Constitution, which will be published by April 2013.

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Health Law Moot Court Competition

I have spent the weekend at Southern Illinois University for the 21st National Health Law Moot Court Competition.  

Using both written and oral appellate advocacy, law school teams from San Diego to Boston competed on a problem concerning a municipal clinic system's constitutional duty to protect the privacy of patient medical records.  

My team from Hamline University School of Law was awarded Second Place Brief and advanced to the semi-finals (final 4 of 32 starting teams).    

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England to Require Clinicians to Write Unilateral DNAR Orders with More Transparency

As I have been reporting these past months, there have been quite a few recent British cases (many now in the courts) involving patients placed on the Liverpool Care Pathway without relatives' knowledge.



On Monday, UK Health Secretary Jeremy Hunt will announce the new obligation on doctors as part of a raft of changes to the NHS constitution.  Under the reforms, being put out for consultation on Monday, health trusts that fail to involve patients and families in decisions could be sued while doctors who ignore their wishes face being struck off.  



It appears that the new guidance will not change British clinicians' substantive right to refuse inappropriate interventions.  It will just change the transparency with which that right is exercised.  We will soon see this same issue bubble to the surface in the United States.  First, even in jurisdictions in which clinicians may have the right to stop life-sustaining treatment,they have been successfully sued for infliction of emotional distress for doing so in an insensitive or secretive manner.  



Second, an increasingly popular mechanism for avoiding or preventing futility conflicts is improving EOL communication.  Unfortunately, this is often implemented such that potentially effective (though "hopeless") options are simply never presented to the surrogate.  This is often effective at avoiding conflict, because the surrogate never elects to pursue options that she does not know exists.  But this approach is also paternalistic.  It merely relocates the "clinician power versus patient autonomy" conflict - from one concerning the treatment itself to one concerning informed consent regarding that treatment.

    

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Nickolas Coke Lived Three Years without a Brain

Nickolas Coke, a Colorado boy who survived three years despite being born without a brain, has died.

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Conference on Medicine and Religion: What Does It Mean to Care? Religious Traditions and Health Professions Today

On May 28-30, 2013 in Chicago - the second annual Conference on Medicine and Religion:  What Does It Mean to Care? Religious Traditions and Health Professions Today



At the heart of medicine is care. Medical care, surgical care, nursing care, wound care, palliative care, even spiritual care—almost everything health professionals do is advanced as a form of care. Yet patients, health professionals, and critics of medicine often question how much care there is in health care. Moreover, it is often unclear how health care fits into a faithful life, as understood in Judaism, Christianity, and Islam.



The second annual National Conference on Medicine and Religion will provide a forum for scholars and health care professionals to ask what it means to care and how the traditions and practices of Judaism, Christianity, and Islam inform possible answers to the question.



What is the care that faith requires, with respect to one’s patients, one’s colleagues, and oneself? How are professionalized forms of care related to and potentially in tension with the care provided in other contexts? How do both types of care relate to the care taught by different religious traditions? What sort of care does contemporary medicine propose to provide and actually provide? 



What can we learn from paradigmatic expressions of care found within religious texts and historical or contemporary religious communities? How do illness experiences and health care practices inform and shape religious norms and practices? How do religious traditions and practices challenge or propose an alternative to conventional health care norms and practices?

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