Jahi McMath "Doing Well" 10 Months after Death

The Terri Schiavo Life & Hope Network just released this update on Jahi McMath.

"We are often asked and receive frequent emails from supporters wanting to know about Jahi McMath, so I wanted to give a quick update. It has been almost 10 months since Jahi was declared 'brain dead' by the State of California. As in any case with someone who has experienced a profound brain injury, progress can be very slow. Nonetheless, Jahi is doing well and continues to show signs she is improving. We remain in touch with the family and I am sure they are grateful for all of your ongoing prayers. Please continue to keep Jahi and her family in your prayers."

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Judge Orders Baby Off Life Support, Despite Mom's Objections

Today, Ms Justice Russell (Family Division, UK High Court) ruled that a one-year-old boy with brain damage should be taken off a life-support machine despite his parents' pleas to keep him alive.  (Daily Mail 1)

Clinicians

The NHS foundation trust which runs the hospital where the youngster is being cared for brought the petition. 

The boy was born prematurely by emergency Cesarean section in 'poor condition' and he required resuscitation and ventilation at birth.  In late 2013, he had suffered an "acute cardiorespiratory deterioration" apparently due to medical error.  This required him to be mechanically ventilated once again.  He has been ventilator dependent and his condition had not improved despite 'on-going intensive care.  Doctors concluded that:  (1) he baby had suffered irreversible brain damage, (2) there was no prospect of recovery, and (3) it was in the youngster's best interests for live-sustaining treatment to be withdrawn.  

Parents

The boy's devout Christian parents disagreed. The parents would not agree to the withdrawal of ventilation. They believed that their son responds to them.  As committed and devout Christians they did not feel they had the right to agree to life-sustaining treatment being withdrawn.  They believed that given time God may work a miracle.  (Daily Mail 2)

Mom:  

• "At the end of the day he is still alive. The ventilator is helping and supporting that life. Where there is life, I don't think you should get the right to determine whether that should be taken away."


• "We believe that (he) does respond to us as parents. We don't feel that the trust has the right to end his life because he has got brain damage."


• "Miracles do happen."

Dad:

• "Even though he is going through all these problems, he still knows ... what is going on. This child still feels. I spend a lot of time with him, talking to him. I know when he is listening ... We know he is reacting to certain things."


• "He still has life. We don't have the right, as parents, as individuals, to take this privilege from him."

Court

The judge gave the trust permission to withdraw life-sustaining ventilation.  She said that she had reached the decision 'very sadly' and with 'great reluctance'.  She said she had to gauge what was in the little boy's best interests after balancing medical evidence against his parents' views.

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Festering Mistrust over Brain Death

I was disappointed to see this newsletter article from the Life Issues Institute and the Terri Schiavo Life & Hope Network titled "The Market for Brain Death."  



The primary focus seems to be on aid in dying, particularly involuntary or non-voluntary aid in dying.  But both the title and the article go on to suggest that unilateral judgments regarding life-sustaining treatment or aid in dying, "may lie behind what seems to be an increase in the 'brain death' diagnosis."



As I recently noted, treatment disputes after diagnosis of brain death do seem to be on the rise.  Unfortunately, messages like this sow the seeds of mistrust and distrust that will spawn even more disputes.  

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Congress Urges CMS to Adequately Reimburse Physicians for Advance Care Planning

This week, 34 Members of the House of Representatives, sent a letter to Centers for Medicare & Medicaid Services (CMS) Administrator, Marilyn Tavenner, to adopt recommendations that would adequately reimburse Medicare providers for having voluntary discussions about end-of-life care and planning with patients.



Currently, the time doctors spend having discussions with their patients about end-of-life care and planning is not reimbursed under Medicaid and Medicare. Without this incentive, these conversations are not happening.



The AMA recently created dedicated CPT codes to capture end-of-life planning conversations.  The letter urges CMS to include the codes in the Medicare Physician Payment Schedule for 2015. 

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Australian Medical Association Position Statement on Medical Futility

Earlier this month, the Australian Medical Association released a new "Position Statement on End of Life Care and Advance Care Planning 2014." The statement outlines policy on issues such as medical futility, decision making capacity, advance care planning, artificial nutrition and hydration, bereavement, workforce, and community awareness.



Futile Treatment is defined as "Treatment that no longer provides a benefit to a patient or treatment where the burdens of treatment outweigh the benefits. Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriate."



Here are the three sections on medical futility:



"7.1  Doctors should understand the limits of medicine in prolonging life and recognise when efforts to prolong life may not benefit the patient. In end of life care, medically futile treatment can be considered to be treatment that gives no, or an extremely small, chance of meaningful prolongation of survival and, at best, can only briefly delay the inevitable death of the patient."



"7.2  Whilst doctors are generally not obliged to provide treatments that are considered medically futile, where possible it is important that the doctor discuss their reasons for determining a treatment to be medically futile with the patient (and/or the SDM, carers, family members) before deciding the treatment should not be offered."


"7.3  In some cases, a treatment may not offer a benefit in terms of curing a patient’s condition, or significantly extending life or improving quality of life, but it may benefit the patient in other ways. For example, a ‘medically futile’ treatment may briefly extend the life of the patient so he or she can achieve their wish of saying goodbye to a relative who is arriving shortly from overseas."

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Denying Others the Right to Die (cartoon)

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POLST - New US Map of POLST Paradigm Programs

The National POLST Paradigm Task Force has updated its national map of POLST programs.  Here are the definitions of the different statuses.  



Mature status - the highest level of endorsement by the NPPTF is reserved solely for states with statewide POLST programs that, among other requirements are the standard preferred method of advance care planning for persons with advanced illness or frailty. Mature POLST programs are used by 50% or more of hospitals, nursing homes, and hospices in each region (as defined by established criteria such as EMS, Department of Health, or the Dartmouth Atlas) of the state. These programs are actively gathering data for quality assurance programs and have considered centralized POLST databases.



Endorsed - The NPPTF will endorse state POLST programs when they have developed and implemented a POLST program and form meeting the NPPTF standards. Endorsed programs are POLST programs that have become standard components of advance care planning in their location. These programs have addressed legal and regulatory issues associated with POLST, and have developed strategies for ongoing implementation and quality assurance.



Developing - Programs are recognized as “developing” when they have both: (1) submitted the Developing State Status Application form and (2) presented the state’s POLST form and progress to the NPPTF’s Developing State Assistance Committee (DSAC). Developing POLST Paradigm Programs may be at various stages of development, ranging from the initial design of a POLST form to active usage of POLST forms, but are working towards the goal of implementing the POLST program statewide. In general, programs at this step are starting to contemplate addressing all Seven Core Elements of Sustainability.



Nonconforming - Maryland legislation that went into effect in 2013 mandates the completion of POLST forms for certain patients. Their program violates the POLST Paradigm’s tenant that completion of a POLST is always voluntary.  The current Massachusetts form does not include the “limited intervention” section that is the heart of POLST and where data documents the highest level of effectiveness but, instead, has a variety of questions. This lack of structure in the form causes confusion and lacks clarity and likely reduces effectiveness in honoring patient wishes.  The current Vermont form is cumbersome and unclear, potentially causing confusion. It also incorporates elements of the state’s advance directive statute, mentioning the concept of futility with respect to the CPR/DNR order section.



No Program - When states are exploring the development of a regional or statewide POLST Paradigm program they can formally connect with the NPPTF. This level is for states not yet ready to complete the Developing POLST Paradigm documentation but who would like to participate in the National POLST Paradigm Program (e.g., receive emails from the national office, attend various education sessions put on by the National Office or the NPPTF, etc).

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Hospice Ethics Policy and Practice in Palliative Care

Oxford University Press has just published Hospice Ethics: Policy and Practice in Palliative Care.  



Hospice is one of the fastest-growing segments of the U.S. healthcare system, a trend that is expected to accelerate as the median age of the population continues to rise over the next three decades. Despite over forty percent of the population now dying while on hospice care, very little has been published on the ethical opportunities and challenges experienced in the everyday lives of those giving and receiving hospice care. 



This book is the first comprehensive collection devoted to analyzing distinctive ethical issues arising in the delivery of hospice care and designed to promote best ethical practices for hospice care professionals and organizations. Thirteen newly commissioned chapters by seventeen hospice experts populate three thematic sections of the book, each devoted to an aspect of the intersection between ethics and hospice care. Here is the table of contents:



Introduction 

Bruce Jennings and Timothy W. Kirk



Section I: Hospice: The Emergence of a Philosophy of Care



1. "From Rites to Rights of Passage": Ideals, Politics, and the Evolution of the American Hospice Movement

Joy Buck



2. Hospice Care as a Moral Practice: Exploring the Philosophy and Ethics of Hospice Care

Timothy W. Kirk



Section II: The Interdisciplinary Team: Ethical Opportunities and Challenges



3. The Pharmacist as an Integral Member of the Hospice Interdisciplinary Team

R. Timothy Tobin



4. The Continuingly Evolving Role of the Hospice Medical Director

Joan Harrold



5. The Interdisciplinary Team - Integrating Moral Reflection and Deliberation 

Terry Altilio and Nessa Coyle



Section III: Organizational and Policy Ethics in Hospice 



6. Ethical Issues in the Care of Infants, Children and Adolescents

Marcia Levetown and Stacy Orloff



7. The 'Patient-Family Dyad' as Interdependent Unit of Hospice Care: Toward an Ethical Justification

Patrick T. Smith



8. Inpatient Hospice Care: Organizational and Ethical Considerations

Tara Friedman



9. Ethical Issues Associated with Hospice in Nursing Homes and Assisted Living Communities

Jean C. Munn and Sheryl Zimmerman



10. Cardiopulmonary Resuscitation in Hospice: Ethically Justified or an Oxymoron?

Muriel R. Gillick



11. Moral Meanings of Physician-Assisted Death for Hospice Ethics

Courtney S. Campbell 



12. Ethics Committees for Hospice: Moving Beyond the Acute Care Model 

Jennifer Ballentine and Pamela Dalinis



Section IV: Ethics and the Future of Hospice



13. Design for Dying: New Directions for Hospice and End-of-life Care 

Bruce Jennings

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Health Care Reform Implementation in Minnesota: Mission Advanced But Not Accomplished

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Careers & Pro Bono Opportunities in Bioethics & Law

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Both Sides Now: Living with Dying: An Immersive Arts Experience

Puppetry, theater, visual arts, and more.  A very cool arts experience is happening this weekend in Singapore called Both Sides Now.  The "immersive arts experience" provides the opportunity for the living to encounter dying. 



Organizers hope to normalise conversations about end-of-life issues by taking this conversation to public spaces. Through interacting with the various artworks, Both Sides Now invites participants to reflect on their own humanness and mortality, and give their personal take on what it means to have a dignified death. 

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Ethical Issues in End-of-Life Care: MacLean Center Interdisciplinary Faculty Seminar Series

Check out this amazing roster of nearly 30 world class seminars on end-of-life issues in the MacLean Center's 2014-2015 Interdisciplinary Faculty Seminar Series.



In the past 50 years, medicine has developed new and unprecedented technologies like breathing machines and dialysis that can prevent or delay death. These technologies have changed how people die, where people die, and physicians’ responsibilities to dying patients. During these 50 years, physicians and society have gradually learned how to best apply these life-saving technologies and how to stop them. In the vast majority of cases in which death is anticipated, patients, families and physicians reach prudent and “negotiated” decisions on when to stop aggressive care.



Yet questions remain. Advance directives have not been the panacea they were hoped to be and deciding for patients who are unable to speak for themselves remains painfully difficult for families and practitioners. Newer technologies such as implanted cardiac defibrillators, left ventricular assist devices, extracorporeal membrane oxygenation continue to raise new questions. Euthanasia and physician assisted suicide remain contentious subjects. Even questions that were thought settled, such as brain death and palliative sedation, have generated new controversies. Further, the cost of caring for patients at the end of life continues to consume a large percentage of the health budget, raising questions about the optimal and just use of health care resources.



THE ETHICS OF GLOBAL PALLIATIVE CARE

KATHEY FOLEY

Wednesday, October 8



THE DEFINITION OF DEATH: NEWLY EMERGING CONTROVERSIES

ROBERT VEATCH

Wednesday, October 15



STARTING VERY SMALL: NEWBORN PERSPECTIVES ON THE BIG DECISIONS

PERRIS KLASS

Wednesday, October 22



BEING MORTAL: MEDICINE AND WHAT MATTERS IN THE END

ATUL GAWANDE

Thursday, October 23



VOLUNTARILY STOPPING EATING AND DRINKING: SEPARATING THE WHEAT FROM THE CHAFF

DANIEL SULMASY

Wednesday, October 29



THE LACK OF CONSENSUS ABOUT FUTILITY

ALAN MEISEL

Wednesday, November 5



TRANFORMING HOW WE CARE FOR THOSE NEAR THE END OF LIFE

SUSAN TOLLE

Wednesday, November 12



COMMUNICATING ABOUT PROGNOSIS AND END-OF-LIFE CARE IN PATIENTS WITH ADVANCED CANCER

JENNIFER TEMEL

Wednesday, November 19



THE FIVE HORSEMEN: MANAGING ‘WICKED’ GLOBAL CRISES

DANIEL CALLAHAN

Wednesday, December 3



SEDATION, CONSCIOUSNESS AND PERSONHOOD: CLINICAL AND ETHICAL PERSPECTIVES IN A PALLIATIVE SETTING

TIMOTHY QUILL

Wednesday, December 10



DONATION AFTER CARDIAC DEATH (DCD): ACADEMIC DISSENT FAILS PATIENTS

TRACY KOOGLER

Wednesday, January 7



THE COST OF END-OF-LIFE CARE

TOMAS PHILIPSON

Wednesday, January 14



MEDICAL STUDENT REFLECTIONS ON CARING FOR DYING PATIENTS

MARK KUCZEWSKI

Wednesday, January 21



WHEN GOOD INTENTIONS AREN’T ENOUGH: BARRIERS TO OPTIMAL END-OF-LIFE CARE

RANJANA SRIVASTAVA

Wednesday, January 28



END-OF-LIFE DECISIONS IN PEDIATRICS: WHY THEY ARE DIFFERENT

JOEL FRADER

Wednesday, February 4



PREDICTING END OF LIFE

BILL MEADOW

Wednesday, February 11



DEMOCRATIC LEGITIMACY AND END-OF-LIFE DECISIONS

DAN BRUDNEY

Wednesday, February 18



THE PROMISE OF A TREATMENT: CARDIAC ARREST AND ITS EFFECT ON CONTEMPORARY MEDICINE

DAN BRAUNER

Wednesday, February 25



ETHICAL OBLIGATIONS AND CLINICAL CARE IN END-OF-LIFE CARE: DERIVING A QUALITY-OF-LIFE CONSTRUCT BASED ON THE ISLAMIC CONCEPT OF ACCOUNTABILITY BEFORE GOD

AASIM PADELA

Wednesday, March 4



TORT LIABILITY IN END-OF-LIFE CARE

NADIA SAWICKI

Wednesday, March 11



ETHICAL ISSUES IN DISCONTINUING LVADS

SAVITRI FEDSON

Wednesday, April 1



IMPROVING QUALITY REDUCES COSTS: ETHICAL ASPECTS OF CARE FOR THE SERIOUSLY ILL

DIANE MEIER

Wednesday, April 8



PERSONS WITH DEMENTIA: ARE THEY THE CANARY IN THE COAL MINE?

JOAN TENO

Wednesday, April 15



WHAT’S SO HARD ABOUT END-OF-LIFE DECISION-MAKING?

PETER UBEL

Wednesday, April 22



A GENERATION LATER: WHY HAS THE END-OF-LIFE DEBATE ENDED?

RICHARD EPSTEIN

Wednesday, April 29



ECMO AS A ‘BRIDGE TO NOWHERE’: ETHICALLY CHALLENGING POIGNANT CASES FROM THE TECHNOLOGICAL EDGE

KEN PRAGER

Wednesday, May 6



LAST EXIT OFF THE CARDIAC FREEWAY: ETHICAL CONSIDERATIONS IN PALLIATIVE CARE AND CARDIOVASCULAR IMPLANTABLE ELECTRONIC DEVICES

JAMES KIRKPATRICK

Wednesday, May 13



ONE EXPLORER’S MAP INTO THE WORLD OF PALLIATIVE CARE CHAPLAINCY RESEARCH

LINDA EMANUEL

Wednesday, May 20

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Better to Be Dead than Disabled?

The disability rights group Not Dead Yet is leading a three-day protest vigil against the World Federation of Right to Die Societies which is holding a meeting that I am attending in Chicago.  



Disability rights advocates have certainly expressed some valid concerns about the expansion of options to hasten death.  Legislators, regulators, and clinicians should seriously grapple with concerns like risks of bias and coercion.  



Unfortunately, the disability groups reach far beyond their valid concerns to make hyperbolic comments.  For example, Not Dead Yet president Diane Coleman stated: "We are here to contradict the message of these groups that it’s better to be dead than disabled."  



That is emphatically not the message of any group attending this meeting.  The core thesis of this meeting is that particular individuals, after careful deliberation, may determine that in their own situation they want to avoid the effects of advanced illnesses like severe dementia.  They would rather die than live a life that they find intolerable. 



There has not been a single suggestion about what individuals ought to choose.  The focus remains on what individuals may choose, on what they have a right to choose for themselves.

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Improving Quality and Honoring Individual Preferences Near the End of Life (IOM 2014)

Yesterday, the Institute of Medicine released its 500-page report, Improving Quality and Honoring Individual Preferences Near the End of Life.



A substantial body of evidence shows that broad improvements to end-of-life care are within reach. In Dying in America, a committee of experts finds that improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system. Dying in America is a study of the current state of health care for persons of all ages with a serious illness or medical condition who are likely approaching death. This report provides a detailed description of important aspects of the current U.S. health care system as they affect Americans nearing the end of life.



Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework. According to this report, the current health care system of rendering more intensive services than are necessary and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. This report makes recommendations to create a system that coordinates caregiving and supports and respects the choices of patients and their families.

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Prevalence of Non-Beneficial ICU Treatment

The Ventura County Star has a new story and a poll on medical futility.  In addition to recounting the widely discussed UCLA research, health care reporter Tom Kisken interviews clinicians at other Southern California hospitals.



"I think it happens at every hospital in the United States." -- Dr. Hannah Grossman, chief medical officer at Los Robles Hospital & Medical Center in Thousand Oaks.



"I wouldn't say it happens every day. . . .  I would say we might have one or two patients a week where it might be futile." -- Dr. David Fishman, director of the intensive care unit at Ventura County Medical Center in Ventura. 



"Medical technology allows us to extend life. . . .  Sometimes it can extend death." -- Ron Hyrchuk, director of spiritual care services and a member of the bioethics committee at Simi Valley Hospital

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International Resource Library on Adult Guardianship

The 3rd World Congress on Adult Guardianship recently convened in Washington, DC. One of the goals of this Congress was to form an online International Resource Library on Adult Guardianship.  That resource is now available here.



The organizers are also looking for more submissions, including papers, brochures, manuals, handbooks and more, are welcome if they would be of help to others.  Submissions may be made by emailing info@nationalguardianshipnetwork.org with the subject line “resource library.” Please provide, in English, a description regarding the document(s) you send, so that they can name and categorize them. 

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Emotional, Religious Reasons to Keep Grandson in PVS on Life Support

This sad story in the Chicago Tribune powerfully illustrates why one grandmother could not consent to comfort care only for her grandson.  



The grandmother's daughter had been shot by a gang member while still pregnant.  "To Jefferson, the baby looked just like her daughter — her face, her color, her hands. But doctors told her [the baby] would remain in a persistent vegetative state, unable to see, hear or breathe on his own."  Clinicians "urged her to remove him from life support, telling her his condition would never improve." 



The grandmother "set the date to pull the plug — Oct. 20, 2011, what would have been her daughter's 18th birthday.  But she had a change of heart as she entered Advocate Christ Medical Center that day.  



"I couldn't see turning the machine off on him . . ..   Who am I to judge whether he lives or dies, OK?  I think at (the hospital) a lot of them were kind of disappointed with me because they thought actually I was

going to turn the machine off. . . .  But my faith didn't allow me to do it."

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CALL FOR PAPERS Aging, Law, & Society Critical Research Network

CALL FOR PAPERS

Aging,
Law, & Society Critical Research Network

Law
and Society Association Annual Meeting

Seattle,
May 28 – May 31, 2015

The Aging, Law, and Society Critical Research
Network (CRN) invites scholars to participate in a multi-event workshop
sponsored by the CRN as part of the Law and Society Association’s 2014 Annual
Meeting.  The Aging, Law & Society
CRN brings together scholars from across disciplines to share research and
ideas about the relationship between law and aging, including how the law
responds the needs of persons as they age and how law shapes the aging
experience.

At this year’s
meeting, the CRN will sponsor two primary types of panels at the annual
meeting:  (1) themed panel presentations
on topics selected by the programming committee; and (2) workshops in which
scholars present works-in-progress and receive commentary from an assigned
discussant.

Accordingly, the CRN encourages paper proposals on a broad range of issues
related to law and aging.  However, we
especially encourage proposals on the following topics:

·        
Comparative
approaches to elder law and old age policy;

·        
The
interaction between elder law and labor and employment law;

·        
Creative
and empirical methodologies for studying law and aging;

·        
The
conference theme:  law’s promises and law’s pathos in
domestic and transnational contexts.

In
addition to paper proposals, we also welcome:

·        
Ideas and proposals for themed panels:  In particular, please email Nina Kohn at nakohn@law.syr.edu if you are already planning a
panel that you would like to have featured as part of the Aging, Law, and
Society CRN; and

·        
Volunteers to serve as commentators on works-in-progress. 

If you would like to present a paper as part of a the CRN’s
programming, please send a 400-500 word
abstract, with your name, full contact information, and a paper title to
both Nina Kohn (nakohn@law.syr.edu) and Nancy
Knauer (nknauer@temple.edu).   Please indicate the stage at which the paper
will be, or is expected to be, in May of 2014. 
If you wish to present a paper showcasing a research methodology, please
send additional copies to Israel Doron (idoron@univ.haifa.ac.il) and Daphna Hacker (dafna@post.tau.ac.il).

Please
submit all proposals for paper presentations by no later than October 1, 2014.  
Earlier submissions are highly
encouraged and will be given priority. 

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Minnesota Maintains 100 Percent Rate for Advance Care Planning

In study after study after study, researchers bemoan
persistently mediocre rates of advance care planning.  

So, I was delighted to hear the Medical Director or Honoring Choices Minnesota, Ken Gephart, announce at a recent conference that the "effective" completion rate of advance care planning in Minnesota is 100%.

What he meant is that medical treatment decisions have been made for every Minnesotan (and every other American too) should they become incapacitated.  The problem is that most of those decisions were not made by the patients themselves.  And in many cases they are not the same treatment decisions that those patients would have made for themselves.  

In short, failure to make any affirmative choice is still a choice.  It is a choice for the default option: continued aggressive treatment.    

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Vincent Lambert - Treatment Pending European Court of Human Rights

The slow and cumbersome nature of litigation often means that the status quo is preserved for a long time, until judgment.  In the context of end-of-life medical treatment, this usually means that the patient's biological existence is perpetuated for months or even years unless or until the court says that physiological support can stop.  



The family of Vincent Lambert is fighting about his proper treatment pending a ruling from the European Court of Human Rights either affirming or reversing the French Council of State.

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Law and Bioethics Career Panel

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Bad Medical Language: "Failure to Die" & "GOMER"

Brian Goldman recently published The Secret Language of Doctors.  In 330 pages, Goldman exposes the clandestine phrases that doctors use to describe patients, situations and even colleagues they detest. This book reveals modern medical culture at its best and all too often at its worst.



Specifically, chapter five is titled "Failure to Die."  This tragic term and the related term "GOMER" is discussed in a brief promotional video that Goldman produced.  

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In re A.P. - Maybe Moot before Maine Supreme Court Can Decide DHHS Right to Direct DNR over Mother Trask's Objections

Last weekend, I quickly summarized a futility case now pending before the Supreme Court of Maine:  In re A.P. [Aleah Peaslee], KEN-14-192.



This is not a traditional futility conflict, because it is not between the patient's surrogate and the patient's healthcare providers.  Instead, the dispute is between a baby's mother (Virginia Trask) and the Maine Department of Health and Human Services who has taken (temporary) custody of the child.



Because of baby Aleah's severe injuries, DHHS pursued a do not resuscitate order contrary to the mother's wishes.  On April 24 Augusta District Court agreed with DHHS. Trask appealed.  The Maine Supreme Court is scheduled to hear the case on September 23.



But now both the DHHS Commissioner and the Governor of Maine agree with Trask that DHHS cannot consent to a DNR order unless Trask's parental rights have first been terminated.



That agreement would seem to eliminate the controversy and moot the case.  Indeed, the state has moved to dismiss the appeal.  But hopefully the court will proceed to rule in the case to provide guidance should the next governor have a different policy.

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Disability Groups & Aid in Dying

Not surprisingly, a number of disability groups have expressed concern to the Disability Rights Legal Center about its recent hiring of Kathryn Tucker.  



For example:  "We wish to engage in dialogue with you about the serious concerns we have over Ms. Tucker’s work in her previous position at Compassion & Choices that has placed members of the disability community in significant danger."  



I really hope that this dialogue happens.  I hope that it will be productive in softening disability groups opposition to aid in dying.  Or at least this dialogue might clarify that there are at least two distinct camps among disability rights advocates:  those who support AID and those who oppose it.

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BBC Dramatization of Assisted Suicide - "The Dilemma"

BBC One has a new show called The Secrets that ran five episodes last week.  The first was called "The Dilemma" and concerns a daughter helping her mother hasten death.  Here is the abstract:



"Pippa is a vet working in a practice based in north London. She is married to Shaun, a tree surgeon running his own outfit, and they are expecting their first child. She has been a vet for the best part of a decade and is beginning to struggle with the more complex ethical elements of her job, like putting down animals and the spiralling insurance and treatment costs that her patients regularly complain about. However, she shows remarkable grace when at work, treating all her patients with great care and attention."



"Her widowed mother Angela is diagnosed with terminal cancer. She has expressed to her daughter that she is struggling to find the energy and the reserve to keep up the fight against her illness. Knowing that at her practice she has the capability to end a life mercifully, the daughter now has to make the biggest decision she has ever made - whether to help her mother end her life."

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Top 20 Medical Journals in the World

Google Scholar Metrics provide an easy way for authors to quickly gauge the visibility and influence of recent articles in scholarly publications. Scholar Metrics summarize recent citations to many publications, to help authors as they consider where to publish their new research.  


Google Scholar identifies the following as the top 20 medical journals based on citations.  I have published in 3 of these.



1. The New England Journal of Medicine

2. The Lancet

3. Cell

4. Proceedings of the National Academy of Sciences

5. Journal of Clinical Oncology

6. Nature Genetics

7. JAMA

8. Circulation

9. Journal of the American College of Cardiology

10. Blood

11. PLoS ONE

12. Nature Medicine

13. Nature Reviews Cancer

14. Neuron

15. British Medical Journal

16. Cancer Research

17. The Journal of Clinical Investigation

18. The Cochrane Database of Systematic Reviews

19. Gastroenterology

20. Nature Immunology

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Top 20 Bioethics Journals in the World

Google Scholar Metrics provide an easy way for authors to quickly gauge the visibility and influence of recent articles in scholarly publications. Scholar Metrics summarize recent citations to many publications, to help authors as they consider where to publish their new research.  



Google Scholar identifies the following as the top 20 bioethics journals based on citations.  I have published in 3 of these.



1. Journal of Medical Ethics

2. The American Journal of Bioethics

3. Nursing Ethics

4. Bioethics

5. Hastings Center Report

6. Journal of Medicine and Philosophy

7. Journal of Empirical Research on Human Research Ethics

8. Medicine, Health Care and Philosophy

9. NanoEthics

10. The Journal of Clinical Ethics

11. Developing World Bioethics

12. Public Health Ethics

13. Theoretical Medicine and Bioethics

14. HEC Forum

15. Cambridge Quarterly of Healthcare Ethics

16. Journal of Bioethical Inquiry

17. Indian Journal of Medical Ethics

18. Asian Bioethics Review

19. International Journal of Feminist Approaches to Bioethics

20. American Journal of Bioethics Primary Research

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Palliative Care - Free Webinar Series

The MJHS Institute for Innovation in Palliative Care providing a free webinar series for clinicians and researchers working in palliative care.



The first one is on September 23:  "Palliative Care: Changing the Health Care Landscape Through Emerging Models."  Another webinar follows every other week.

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West Virginia e-Directive Registry - Model for Other States

West Virginia has the most comprehensive registry in the United States.  It includes POST (Physician Orders for Scope of Treatment), both types of advance directives, and DNR cards.



A registry is important because even when individuals do advance care planning and record their preferences regarding treatment or healthcare agents, those documents are often not available at the time needed.  The WV e-Directive Registry provides 24/7 online access by health care providers through WVHIN, so that patients' wishes will be respected throughout the continuum of health care settings.



One consumer information video is below.  Here is another that was broadcast, last night, by local television.



  

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7th Annual Pediatric Bioethics Conference

On November 7, 2014, Wolfson Children’s Hospital, in partnership with the University of North Florida and the Florida Bioethics Network, presents the Seventh Annual Pediatric Bioethics Conference.

Welcoming Remarks 

Alissa Hurwitz Swota, PhD

University of North Florida and Wolfson Children’s Hospital, Jacksonville, FL



Wolfson Lecture: Ethical Dilemmas in Pediatric Nursing Administration

Veronica Scott-Fulton, DNP, MPH, RN, NEA-BC

Vice President, Operations & Patient Care Services

Wolfson Children’s Hospital



Ethical and Clinical Challenges in Caring for Children with Cancer in the Era of Chemotherapy Drug Shortages: The Not so Good, the Bad, and the Ugly 

Yoram Unguru, MD, MS, MA

Attending Physician, Division of Pediatric Hematology/Oncology, The Herman and Walter Samuelson Children’s Hospital at Sinai Core Faculty, Johns Hopkins Berman Institute of Bioethics; Assistant Professor, Johns Hopkins University School of Medicine



Living with Illness: A Sibling Perspective  

Moderator: Kelly Komatz, MD, MPH, FAAP, FAAHPM

Assistant Professor, UF COM Jacksonville, Department of Pediatrics/Community Pediatrics



Conflict Resolution in Healthcare: Beyond Bioethics Mediation 

Haavi Morreim, JD, PhDProfessor, Department of Internal Medicine, College of Medicine, University of Tennessee; Principal, ADR Institute, LLC



Can We Reasonably Hope to Transform Unreasonable Hopes? 

Ralph Baergen, PhD, MPH 

Professor of Philosophy, Idaho State University



Child Abuse: Working with Parents who may have put their Child in the Hospital 

Kathleen Dully, MD

Medical Director, First Coast Child Protection Team

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