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This brief scene from The Big Sick illustrates the informal manner in which hospital clinicians confirm whether a purported family member really is authorized to speak on the patient's behalf.

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by Craig Klugman, Ph.D.

While serving as a faculty member at a medical school in Texas, I married my now husband. I did not announce this but many of the students found out and celebrated because this made me one of the few “out” people at the medical school. I was invited to be one of the faculty advisors of the LGBQTI (lesbian, gay, bisexual, queer, trans, intersex) student organization because even though I was newly out, there were very few potential role models for these future health care providers. One of the group’s projects was to increase the LGBQTI health content in the curriculum (from none).…

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Traditionally, courts have not been receptive to claims for unwanted medical treatment at the end of life. But things are changing.

I published a series of articles (here and here and here) both arguing and demonstrating that more litigants are filings and winning lawsuits when clinicians administer treatment contrary to advance directives. I collected some resources here.

The latest of these lawsuits was filed last week in Bronx Supreme Court. After receiving a dementia diagnosis, Gerald Greenberg completed an advance directive directing that he was to be given “comfort measures only, no intravenous fluids and no antibiotics."

But in November 2016, Greenberg was transferred from a nursing home to Montefiore New Rochelle Hospital. There, clinicians violated Greenberg’s advance directive by giving him medications that kept him alive for a whole month before he was eventually transferred to hospice.



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A New York court may have just expanded the rights of families to assert religious objections to brain death. As I explained here, for forty years, New York law has only required hospitals to give a reasonable accommodation (24 to 72 hours) after deter...

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Kathryn Tucker has a new article in the North Carolina Law Review arguing that in states without a prohibition of MAID, such as North Carolina, it is both possible and desirable for the practice to develop subject to the standard of care as oppose...

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When enacting statutes that affirmatively authorize medical aid in dying (MAID), U.S. states have been closely following the Oregon model for over a decade. That model includes both narrow eligibility conditions and overly restrictive non-evidence-based safeguards.

But, as in Canada, the U.S. trend now seems to be toward expanding access. I recently blogged about pending New Mexico legislation that reduces the waiting period, expands the types of qualified clinicians, and eliminates extra visits.

Other states are also looking to expand access. For example, for over 20 years, Oregon itself has required that the patient have an incurable and irreversible disease that will, within reasonable medical judgment, "produce death within six months." But pending legislation would change that strict temporal period to "produce or substantially contribute to
a patient’s death."

Obviously, right-to-life advocates are not happy about this. But expanding access in these ways protects patient liberty with no plausible risk to patient safety.


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Please join me in Atlanta on March 21 & 22, 2019, for the 25th Annual Conference of the Healthcare Ethics Consortium and the Emory University Center for Ethics - "Deeply Rooted: Healthcare Ethics in an Era of Change."

Day One – Thursday, March 21, 2019


Healthcare Ethics’ Deep Roots in the Nature of Death/End of Life

Looking back/looking forward
Medical Futility/Medically Ineffective Treatment
50 years since the Harvard Report on Brain Death
          
8:45   Welcome
Kathy Kinlaw, MDiv, Director, Healthcare Ethics Consortium
                                                                   
9:00   Keynote Speaker:  
Thaddeus Pope, JD, PhD, Health Law Professor and Bioethicist, Mitchell Hamline School of Law, Minnesota 

10:45  Panel discussion 

Interdisciplinary conversation on the nature of death & implications for patient care

Autonomy in an Era of Change


1:15   The Evolution of “Respect for Autonomy”                  

Tara Adyanthaya, JD, MBE, TLA Healthcare Ethics Consulting and Morris Manning &Martin, LLP (Overview/framing speaker)        
            
1:30  What Does Respect for Autonomy Mean in Practice? Managing Expectations and Conflicts 
Clinical Case and Panel Discussion
Patient and healthcare professionals’ expectations and values; Communication; Conflict management; “Dignity of Risk”

2:50   Does Informed Consent Exist - and What Does the Future Hold? 

Dr. Ben Stoff, MD, MA, Associate Professor of Dermatology, Emory School of Medicine (Overview/framing speaker and Moderator)  

Interdisciplinary Panel Discussion


4:00   Autonomy in an Era of Change:  What Issues Do New Technologies Raise?

Panel Discussion 
Genetic Engineering, Prenatal Diagnosis and Interventions, De-identified Data Streams Leading to Reidentification of Patients/Research Subjects; Neuroethics

Day Two – Friday, March 22, 2019


Measuring and Predicting the Future

          
8:30   Metric Indicators in Healthcare  
Dr. Adrienne Mims, MD, MPH, Vice President and Chief Medical Officer, Alliant GMCF (Overview/framing speaker)
     
8:45   The Ethical Dimensions of Quality Measurement and Metrics
Panel Discussion 
Mary Lynn Dell, MD, DMin, Professor of Clinical Psychiatry and Pediatrics physician, Ohio State University
Bruce Greenfield, PhD, Professor of Physical Therapy, Emory University
Michael McDaniel, MD, Assistant Professor of Medicine, Cardiology, Emory School of Medicine
Melissa Lauren Wood, MA, Assistant Bioethicist, St Joseph’s/Candler, Savannah

10:40 Predicting the Future

Paul Root Wolpe, PhD, Director, Emory University Center for Ethics (Overview/framing speaker)
Panel Discussion 
Preventive technology/diagnosis/treating prodromal stages of conditions

12:00  Presentation of Heroes in Healthcare Ethics Award


Human Touch/Human Care and the New Technologies


1:15   Humanizing Bioethics – Deeply Rooted

                        
2:00   Remote Technologies, Telemedicine, Artificial Intelligence & Keeping Care for the Patient Central
John Banja, PhD, Professor of Rehabilitation Medicine; Medical Ethicist, Center for Ethics, Emory University
(Overview/framing speaker and Moderator)  

Panel Discussion 


3:30   On the Cusp: Predictions for the Future of Healthcare Ethics 

Interdisciplinary Discussion with Early Career Leaders
Early Career Leaders Panel Discussion Physicians, Nurse, Social Worker, Pastoral Care…




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Here is the program for the Third International Conference on End of Life Law, Ethics, Policy, and Practice. Pretty awesome.  

Thursday 7 March, 2019

08.30-09.00
Registration & Welcome Coffee

09.00-09.10
Welcome by the Chair of the Scientific Committee – Kenneth Chambaere (BE)

09.10-09.30
Introduction by an external speaker (TBC)

Plenary 1: Latest developments in assisted dying around the world

09.30-10.00
Developments in European countries – Agnes van der Heide (NL)

10.00-10.30
Recent developments and the future of MAiD in Canada – Jocelyn Downie (CAN)

10.30-11.00
A review of developments in Australia – Lindy Willmott (AUS)

11.00-11.15
Comfort Break

11.15-12.00
Global Panel

12.00-13.00
Lunch

Parallel Sessions 1
13.00-14.30

ASSISTED DYING & IDEOLOGY

MAiD in Canada – 2 years of experience Green-Wiebe-Gokool-Daws (CAN)

Euthanasia embedded in palliative care? – Bernheim (BE)


‘Pillarization’ as/and biopolitics. Institutional shaping of the requests for euthanasia in Belgium: a sociological approach – Hamarat (BE)

What do we know about the attitudes of Australian doctors to legalised assisted dying? – Rutherford (AUS)

Euthanasia in Italy: A battle between religion and secularism – Agterberg (IT)

CAPACITY

Cognitive Distortions and Capacity in MAID Requests where Mental Illness is Present – Dembo (CAN)

Executive dysfunction and capacity for medical decision-making in MAID Requests – Thorpe (CAN)

Rights! Freedom! Autonomy! Capacity? – Saul (AUS)

A new law in Taiwan: the convergence of legal capacity and mental capacity in Patient Autonomy Act – Hsieh (TWN)

VOLUNTARY STOPPING EATING & DRINKING

Bioethical and legal dilemmas on hunger strike in prison settings – Ciruzzi (ARG)

Is Voluntary Stopping Eating and Drinking a Form of Suicide? – McGee (AUS)

VSED for Advanced Dementia Patients in the US – Rivas (USA)

14.30-15.00
Coffee Break

Parallel Sessions 2
15.00-16.30

ROLE OF PROFESSIONALS IN ASSISTED DYING

Making Sense of Medical Aid in Dying: how physicians in Québec (Canada) experience MAiD in relation to the ordinary practice of medicine – Blouin (CAN)

The physician’s role in medical aid-in-dying: perspectives from Vermont – Buchbinder (USA)

Clinicians’ perspectives, and willingness to participate in voluntary assisted dying in Victoria, Australia – Detering (AUS)

Health Care Professionals’ Perspectives on Medical Assistance in Dying – Fast (CAN)

ASSISTED DYING: DEVELOPMENTS IN BELGIUM & THE NETHERLANDS

Slippery slope in the Netherlands? – De Vito (NL)

Study on denied requests for euthanasia submitted at the End-of-Life Clinic – Van den Ende (NL)

Factors associated with requesting and receiving euthanasia: A nationwide mortality follow-back study with a focus on psychiatric disorders, dementia and an accumulation of health problems related to old age – Evenblij (NL)

Euthanasia in Belgium: Shortcomings of the law and its application and of the monitoring of practice – Sterckx (BE)

ADVANCE DIRECTIVES

Legal and ethical challenges of new media in advance directives – Chan (UK)

Doctors’ perspectives on adhering to advance care directives when making medical decisions for patients with chronic disease: an interview study in a Melbourne metropolitan hospital – Detering (AUS)

Prevalence of advance care directives among older Australians accessing health and residential aged care services: multi-centre audit study – Nolte (AUS)

The association between knowledge of end-of-life options and attitudes and behaviors regarding advance directives in Switzerland: Evidence from a National Population-based Study – Vilpert (SWI)

ACCESS TO ASSISTED DYING

Assisted dying laws in Victoria: Restricting discussions about end of life options – Willmott (AUS)


The Waxing and Waning of the Informed Consent Principle in the Law Governing End of Life Decision-making in Canada – McMorrow (CAN)

Deployment of ‘the dying’: Voluntary assisted dying in the Australian state of Victoria – Hempton (AUS)

Representing the collective voice of the newly emerging MAiD community in Canada – Brittain (CAN)

16.30-17.00 Coffee Break

Plenary 2: Conscientious objection

17.00-17.30  
Conscientious objection by physicians/health care professionals – Daphne Gilbert (CAN)

17.30-18.00  
Conscientious objection by institutions – Sylvie Tack (BE)

18.00-
Reception at Ghent Town Hall

Friday 8 March, 2019

08.30-09.00  
Welcome Coffee


Parallel Sessions 3
09.00-10.30


VIEWS ON END-OF-LIFE TREATMENT

From legislative provisions on End of Life to application on clinical grounds: Which ethical challenges? A European – French, German, Italian – comparative perspective

Staff Positions on End-Of-Life Treatment in patients with incurable diseases – Gabison (ISR)

Non-beneficial treatment at the end of life in a palliative care population with cancer: a systematic review of reasons – Moors (NL)

What do people with life-limiting illness considering euthanasia/assisted dying think about treatments at the end-of-life? – Young (NZ)

Medical Futility Dispute Resolution Options in the United States: Law & Ethics Fundamentals – Pope (USA)

PROMOTION OF ADVANCE CARE PLANNING

Transforming Advance Care Planning Australia, a collaborative national effort – Nolte (AUS)

Advance directives: What does a campaign of loco-regional public debates reveal of citizens’ perception of them? – Pierre (FR)

The cost-effectiveness of advance care planning for older adults with end-stage kidney disease – Sellars (AUS)

ASSISTED DYING IN PSYCHIATRY

When Unbearable Suffering Incites Psychiatric Patients to Request Euthanasia: a Qualitative Study – Verhofstadt (BE)

Public and physicians’ support for euthanasia in people suffering from psychiatric disorders: A cross-sectional survey study – Evenblij (NL)

Perspectives from mental health professionals in Saskatchewan, Canada about the potential expansion of Medical Assistance in Dying to patients with mental illness – MacPherson (CAN)

10.30-11.00  
Coffee Break

Plenary 3: Treatment withdrawal at the end of life

11.00-11.30  
UK Law on Agreement Treatment Withdrawal – Celia Kitzinger (UK)

11.30-12.00  
VSED Divulged: Legal, Ethical, and Clinical Status of the Voluntarily Stopping Eating and Drinking Exit Option – Thaddeus Pope (USA)

12.00-13.00  
Lunch

Parallel Sessions 4
13.00-14.30

PALLIATIVE SEDATION

Palliative sedation at the end of life: state-of-the art, challenges and opportunities for improvement – Robijn (BE)

Deep and continuous sedation until death : A first national restrospective survey in France – Bretonnière (FR)

Development of an information leaflet for palliative sedation – Spichiger (SWI)

ASSISTED SUICIDE VS SUICIDE

Understanding the concept of suicide in an age of assisted dying (a global issue through the lens of Canadian experience) – Downie (CAN)

Suicide prevention in an age of medical assistance in dying: a Canadian perspective – Gupta (CAN)

Suicide or not suicide: how people involved in conversations about assisted suicide distinguish assisted suicide from suicide in Switzerland – Blouin (CAN)

END OF LIFE ISSUES IN DEMENTIA

Termination of life based on a written request: what do the Regional Review Committees say? – De Vito (NL)

Views on assisted dying for people with dementia: a Netnographic approach – Dekhoda (NZ)

Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies – Sellars (AUS)

ASSISTED DYING IN PSYCHIATRY

Primum non nocere: medical liability in end-of-life scenarios – Raposo (CHN)

Dying on an emergency department and the decisions at the end-of-life – Vermeir (BE)

Access to Home Palliative Care: pilot project in Portugal – Da Ponte (POR)

Moral Distress and Autonomy at the End of Life – Davis (USA)

Knowledge and attitude to end of life choices including medical assistance in dying (MAiD) in marginalized indigenous and non-indigenous people in Canada – Wiebe (CAN)

14.30-15.00  
Coffee Break

Plenary 4:  Pressure points in end-of-life debates

15.00-15:30  
Dementia, capacity and advance directives (TBC)

15.30-16.00  
Palliative sedation as an alternative to assistance in dying? – James Downar (CAN)

Parallel Sessions 5

16.00-17.30

WITHHOLDING & WITHDRAWING TREATMENT

Withdrawing and withholding treatment in a post-best interests world – Cameron (AUS)

Issues of Overlap between “Suicide” and “Physician Aid in Dying” Battin M (USA)

Medical futility at the end-of-life: an Australian policy analysis – Close (AUS)

To eat or to die: a crucial dilemma in Elderly – Fournier (FR)

The Vincent Lambert case: An illustration of the limits of an EoL law to resolve all ethical clinical issues – Berthiau (FR)

STATISTICS FOR ASSISTED DYING

Completion of medical certificates of death after an assisted death: An environmental scan of practices – Brown (CAN)

An Analysis of Euthanasia Statistics in Various Countries – Tanaka (JPN)

Drugs used for euthanasia: A repeated Population-Based Mortality Follow-Back Study in Flanders, Belgium – Dierickx (BE)

Medical Assistance in Dying in Canada:  An assessment of the evidence with respect to advance requests, mature minors, and where a mental disorder is the sole underlying medical condition – Meslin (CAN)

DEFINING DEATH

Consensus, controversies and dilemmas concerning the definition of death in the USA – Levin (USA)

Brain Death and the Law: Hard Cases and Legal Challenges – Pope (USA)

Changing the Definition of Death – McGee (AUS)

Final death – Towers (USA)

18.30-
Congress Dinner at Ghent City Museum

Saturday 9 March, 2019

08:30-09.00  
Welcome Coffee

Parallel Sessions 6

09.00-10.30

IMPLEMENTATION OF ASSISTED DYING

Developing a medical assistance in dying curriculum in specialty residency training programs – Macdonald (CAN)

Impact of a Unique Canadian approach to Medical Assistence in Dying by Nurse Practitoners in the patient’s home environment – Pelletier (CAN)

Psychiatric Patients Requesting Euthanasia:  Initiatives for Sound Clinical and Ethical Decision Making – Verhofstadt (BE)

A regulatory analysis of Victoria’s Voluntary Assisted Dying Regime – White  & Del Villar (AUS)

NEONATES & MINORS

Neonatologists’ and neonatal nurses’ attitudes towards perinatal end-of-life decisions – Dombrecht (BE)

Every single day we resuscitate her… what are we doing, where are we going? Modifiable factors for improving end-of-life decision making for neonatologists, nurses, and parents in the Neonatal Intensive Care Unit – Piette (BE)

Age Distinction in Canada’s Bill C-14: Necessary or Discriminatory? – Morrison (CAN)

The fraught notion of a good death for children: Can a child ever really ‘die well’? – Moore (USA) +++ Minors & MAiD: Canadian Law Reform Process & Debate (Constance MacIntosh)

Minors & MAiD: Canadian Law Reform Process & Debate – MacIntosh (CAN)

ASSISTED DYING FROM A RIGHTS PERSPECTIVE

A re-examination of the compatibility of the English blanket ban on assisted suicide with the prohibition on ill-treatment in article 3 of the European Convention on Human Rights – Martin (UK)

The semantics of the ‘right to assisted dying’ – McCann (UK)

Legal change on assisted dying revisited – Lewis (UK)

Right-to-Die Society in Belgium: history & future – Van Hoey (BE)

POLICY DEVELOPMENT

Policy development in contested spaces: drivers of change and evidence based policy – Cameron (AUS)

The Voluntary Assisted Dying Act 2017: the role of the public service in significant government reform – Kearney (AUS)

Restricted palliative care – Ciurlionis (LIT)

Guidelines-based regulation on end-of-life care decisions in Japan – Iwata (JPN)

10.30-11.00  
Coffee Break

Plenary 5: The long-term view on end-of-life practice

11.00-11.30  
Ethical reflection on what has passed: predictions for the future – Freddy Mortier (BE)

11.30-12.15  
Global Panel

Closing

12.15-12.30  
Closing by Co-Chair of the Scientific Committee – Luc Deliens (BE)

12.30-13.30  
Lunch



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