Prince Friso - British versus Dutch Law on When It Is Time to Stop Life Support?

Prince Friso (of the Dutch Royal Family) has been in a coma for six months after he was caught in an avalanche while skiing in the Austrian resort of Lech.  The prince had been buried for 25 minutes, followed by a 50-minute CPR to treat his cardiac arrest.  The prince remains at a British hospital.



The six month point is key temporal threshold.  A medical ethics specialist at the University of Rotterdam Erasmus Hospital said: "The six month point is a critical boundary. Up until that point you always hope for signs of improvement."  (Austrian Times)



Accordingly, Netherlands senator and medical ethicist Heleen Dupuis observes an interesting difference between the UK and the Netherlands.  She stated:  "It's questionable whether the prince will ever have a normal life again. . . .  I understand that the chances are extremely small. Had the prince been sent to a Dutch hospital, doctors would probably have turned off the life support systems because there is such a slim possibility that he will ever recover."  (London Evening Standard; The Australian) 

The Netherlands has had a law, since 2002,  that allows doctors to end treatment if a victim’s suffering is deemed to be “interminable and unbearable.”

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The Silent Majority: Who Speaks at IRB Meetings?

In a new article in IRB Ethics titled "The Silent Majority: Who Speaks at IRB Meetings?" Philip J. Candilis and colleagues observe that "institutional review boards (IRBs) are almost universally considered to be overworked and understaffed. They also require substantial commitments of time and resources from their members. Although some surveys report average IRB memberships of 15 people or more, federal regulations require only five."



Candilis and colleagues present data on IRB meetings at eight of the top 25 academic medical centers in the United States funded by the National Institutes of Health. These data indicate substantial contributions from primary reviewers and chairs during protocol discussions but little from other members.  In this exhaustive and detailed review, I complained of the same sort of problems in the close cousins of IRBs, healthcare ethics committees.  This is a topic I plan to return to in December.

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Coma - New Film Adaptation on A&E

Here is something for your Labor Day weekend.  A&E Network presents "Coma," a modern day retelling of the bestselling novel by Robin Cook.  This is a four-hour epic two-night event from Ridley and Tony Scott featuring a multiple Academy Award and Emmy Award-winning cast with Lauren Ambrose, Steven Pasquale, Geena Davis, James Woods, Ellen Burstyn, and Richard Dreyfuss.



At a time when "we are living in an aging society . . . have [medical science and physicians] done [their]job far too well?" Are we living too long, and how much should humans intervene in natural selection when it comes to death, dying and extending life?  



Susan Wheeler is a young medical student who arrives at Atlanta's Memorial Hospital to begin an internship. Susan becomes alarmed that the hospital has a higher than usual number of patients who lapse into comas. As she digs in to find out why, she gets into more trouble. She knows the comatose patients are sent to the fortresslike Jefferson Institute and wants to get inside to find out what's happening to them.

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2012 Publications Collage

Here are covers of some of the articles and book chapters that I published in 2012.

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UPDATE: McDaniel v. Cook Children's Medical Center

I blogged a few days ago about the case of Zach McDaniel.  Cook Children’s Medical Center in Fort planned to stop Zach's life-sustaining treatments over his parents' objections.  While Texas law provides a simple (too simple) mechanism for doing this legally, it is unclear that the hospital complied.  So, the hospital planned to start over and go through the proper process.  But before it could so, Zach was transferred by ground ambulance to Hendricks Medical Center in Abilene.

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New End-of-Life Care E-Learning Session

A new e-learning session focusing on the General Medical
Council’s new guidance on treatment and care towards the end of life is now
available via e-ELCA, End of Life Care for All. 

The new e-ELCA session explores the fictional case studies of two
patients with different conditions and allows the users to work through the
decision making process alongside the doctor, the patient and those close to
them.  The case studies cover both
managing a patient’s request for treatment and a patient’s advance refusal of
treatment.  It gives doctors guidance about areas of practice including
clinically assisted nutrition and hydration and cardiopulmonary resuscitation
(CPR).  Interactive exercises and multiple choice questions are
included to test the learners’ knowledge and animation and imagery help create
a visually engaging experience. Opportunities for personal reflection are
provided throughout.

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Bella Addormentata (Sleeping Beauty) 2012 Film

A new film titled "Sleeping Beauty" is based on the story of Eluana Englaro the Italian young woman in a PVS whose family fought a long legal battle to withdraw her treatment.  The film is now in competition at the Venice Film Festival.  Here is the synopsis:  

The film takes place in various parts of Italy over six days, which are Eluana Englaro’s last and whose story remains in the background. The stories of fictional characters from different faiths and ideologies are connected emotively to that case, in an existential reflection on the reasons for living life and for hope despite everything. A senator has to choose whether to vote for a law that goes against his conscience or not, going against the party line, whilst his daughter Maria, an activist in a pro-life movement, demonstrates outside the clinic where Eluana is being treated. Roberto, alongside his brother, is on the opposing secular front; an “enemy” who Maria falls in love with. Elsewhere, a great actress looks to her faith and a miracle to save her daughter, who has been in an irreversible coma for years, and for whom she has sacrificed her relationship with her son. Finally, there is the desperate Rossa who wants to die, but a young doctor called Pallido opposes her suicide with all his might. And against all expectations, at the end of the film, there is a reawakening.

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Should we ration Medicare services for end-of-life care? (Poll results)

From a poll in the Kalamazoo News:

Should we ration Medicare services for end-of-life care?

Yes. We have finite resources, and Medicare should have protocols to prevent unnecessarily prolonging the dying process. 32.67%  (49 votes) 

 

No. Medicare should pay for what doctors order and families want. 17.33%  (26 votes) 

 

No rationing, but senior citizens should be encouraged to detail their wishes for end-of-life care. 50%  (75 votes) 

 

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Mr. L, a British Hassan Rasouli?

A case now pending before the Court of Protection at the High Court in London (Mr. Justice Moylan) has some uncanny parallels to the Hassan Rasouli case pending before the Supreme Court of Canada.

1. 55-year-old Mr. L., like 60-year-old Mr. Rasouli is a Muslim who believes that "you prolong life as far as you can and that you actively take every step to do so."  The family wants him kept alive as long as possible so that he can die "a good Muslim death."


2. Mr. L., after a hypoxic bain injury from a severe heart attack five weeks ago, was diagnosed as being in a persistent vegetative state, like Mr. Rasouli.


3. Mr. L., like Mr. Rasouli, was re-diagnosed after the commencement of court proceedings, as being in a minimally conscious state, instead of in a PVS.


4. Clinicians at the Pennine Acute Hospitals NHS Trust, like clinicians at Sunnybrook Hospital, think that Mr. L.'s continued treatment is medically inappropriate, because Mr. L. has no meaningful prospects for further recovery.  Non-palliative care, the trust's barrister explained, would not be the prolongation of life but just "the prolongation of death and lack of dignity."


5. The 
   Pennine Acute Hospitals NHS Trust, like Sunnybrook clinicians Cuthbertson and Rubenfeld, want the court to permit them to withhold and/or withdraw life-sustaining treatment (CPR in Mr. L.'s case).  

On Thursday, the case was adjourned until October 1, 2012, so that clinicians can consider the new evidence about Mr. L.'s condition.  

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Due Process under the Texas Advance Directives Act

I was re-reading a famous Texas case this week, Burditt v. Dept. of Health & Human Services, 934 F.2d 1362 (5th Cir. 1991).  It provides an interesting contrast to the dispute resolution mechanisms in the Texas Advance Directives Act.



The on-call obstetrician at DeTar Hospita in Victoria, Texas refused to treat Rosa Rivera who had arrived in labor and with dangerously high blood pressure.  Dr. Burditt wanted to transfer Rivera to another hospital without first stabilizing her (EMTALA-defined) emergency medical condition.  The hospital administrator told Burditt that EMTALA prohibited such transfers unless he first completed a "Physician's Certification" that the benefits from treatment at the other facility outweigh the increased risks from the transfer (which was 170 miles away).  Burditt asked for "that dang piece of paper" and signed his name.  Nevertheless, Burditt was still sanctioned by DHHS because he signed the transfer certification "as a mere formality" and did not actually weigh the medical risks and benefits of transfer.



In Burditt, the DHHS was able to look into the merits of the physician certification. Finding neither evidence nor medical judgment supporting the certification, DHHS determined it was invalid.  In contrast, there is no such oversight over Texas hospital ethics committees employing the Tex. Health & Safety 166.046 procedure,  The determination of medical inappropriateness may be (and often is) just as unsubstantiated as Dr. Burditt's certification.  But there is no process (judicial or administrative) to assess that, as there was in the case of Dr. Burditt.

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McDaniel v. Cook Children's Medical Center

In contrast to 2007 to 2010, the press has not lately been
covering many cases involving Texas hospitals’ unilateral refusal of
life-sustaining treatment.  But there is
one new case this month (reported by Spero News).

12-year-old boy, Zach McDaniel suffered a gunshot wound to
his head as a bystander during a drug-deal in Abilene, Texas.  Zach
underwent emergency surgery and then was transferred to Cook Children's Medical
Center in Ft. Worth for advanced treatment.

Upon transfer, Zach was admitted to the pediatric intensive care
unit. Heavily sedated and connected to a ventilator, doctors painted a grim
picture for his parents. Cook medical officials told the boy's parents that
part of Zach's brain was removed during his emergency surgery. The doctors told
them that his prognosis for survival was poor and encouraged them to consent to
comfort measures only.  The parents apparently refused.

On August 13, the hospital convened an "ethics panel"
but apparently not in a manner consistent with the Texas Advance Directives
Act.  Nevertheless, clinicians at Cook Children' proceeded to withdraw
artificial nutrition and hydration.  After
the parents contacted Texas Right to Life, clinicians removed
the (unilaterally placed) DNR order and reinstated food and
water.  But they again told the parents that he didn't want to treat their
son.  

The hospital plans to reconvene the ethics panel in a
manner consistent with Texas Health and Safety Code 166.046, so that they can
proceed to stop treatment without the parents' consent.

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End-of-Life Documentaries and Films

In February 2012, the NVVE organized a Documentary Film Festival focused on euthanasia and other choices around the self-chosen life. A total of 38 feature films and documentaries were screened during the festival.



The NVVE is now supporting a website that gathers foreign feature films, short films and documentaries about all the choices around the self-chosen life.  Many are available to watch online directly from this site.

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New University of Memphis Center for Health Law

The University of Memphis Cecil C. Humphreys School of Law is seeking
the founding Director for its new Center for Health Law.  The position announcement notes:

The Director’s responsibilities will include strategic planning,
fundraising, curriculum development, maintenance and growth of relationships
with relevant local, national, and international scholarly and professional
associations, scholarship production, teaching, and mentoring.

The Law School seeks to expand its health-law curriculum and related
health-law opportunities for the purpose of assuming the leading role in the
MidSouth in training health-care lawyers, promoting scholarship and discussion
concerning health-care law and policy, and providing pro bono health
care-related legal services to low-income individuals.  This initiative is aligned with the
University’s increasing emphasis on health-related education, demonstrated,
inter alia, by the recent founding of the School of Public Health and a
significant expansion of the School of Nursing.

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Cuthbertson v. Rasouli - New Factums Filed

Over the past few weeks, several interveners in Cuthbertson v. Rasouli have filed factums with the Supreme Court of Canada.  I have posted them here.  I will provide commentary shortly.  

• Euthanasia Prevention Coalition


• Canadian Critical Care Society


• Mental Health Legal Committee and HIV & AIDS Legal Clinic Ontario


• Evangelical Fellowship of Canada


• Advocacy Centre for the Elderly

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Religiously Motivated Parents Demand Aggressive Life-Sustaining Treatment

An article published "Online First" in the Journal of Medical Ethics in March 2012 has just been widely reported around the world -- "Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?"



The physician authors claim that terminally ill children with no hope of survival are subjected to needless suffering amounting to "torture" by parents who refuse to allow the withdrawal of treatment because of their religious beliefs.  The authors argue that families with deeply held hopes for a "miraculous" recovery and trust in divine intervention are increasingly being allowed to "stonewall" medical opinion.  The authors for an overhaul of the legal system to reduce the weight given to parents' religious beliefs in such cases.

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Effect of Financial Relationships on the Behaviors of Health Care Professionals: A Review of the Evidence

Law professor Christopher Robertson and two
medical colleagues have a new paper forthcoming in the Journal
of Law, Medicine and Ethics, titled "Effect of
Financial Relationships on the Behaviors of Health Care Professionals: A Review
of the Evidence."  Here is the abstract:

This paper explores the empirical evidence
regarding the impact of financial relationships on the behavior of health care providers, specifically, physicians.  We
identify and synthesize peer-reviewed data addressing whether financial
incentives are causally related to patient outcomes and health care
costs. 

We cover three main areas where financial
conflicts of interest arise and may have an observable relationship to health
care practices: 

1.    
Physicians’ roles as self-referrers

2.    
Insurance reimbursement schemes that create incentives for
certain clinical choices over others

3.    
Financial relationships between physicians and the drug and
device industries. 

We found a well-developed scientific literature
consisting of dozens of empirical studies, some that allow stronger causal
inferences than others, but which altogether show that such financial conflicts
of interests can, and sometimes do, impact physicians’ clinical decisions.
Further research is warranted to document the causal relationship of such
changes on health outcomes and the cost of care, but the current base of evidence
is sufficiently robust to motivate policy reform.

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British Courts Allow Clinicians to Stop Life Support over Parents' Objections

Just a few days ago, I blogged about the London High Court decision in Baby X, permitting clinicians to remove a baby's life support over the parents' objections.  This morning, the British newspaper (Daily Mail; Telegraph) are reporting another London court decision permitting providers to stop treatment (ECMO) for an eight-year-old boy over his parents' objections.





THE COURT DECISION

On Friday, Mr Justice Ryder (Family Division) said there was no hope of the eight-year-old recovering from lung failure after a “tragic decline in health” and it would be wrong to keep him alive and possibly in pain on a machine. Weighing up the benefits and burdens of keeping the boy alive, Mr Justice Ryder agreed the continued presence of his family would provide him with comfort and would be in keeping with the tenets of their faith.  However he said the child was at risk of further complications and infection as well as already being seriously ill.





THE MEDICAL EVIDENCE

The boy was born prematurely and underwent surgery at just three months old to try to repair several holes in his heart.  He went on to live a normal life with his parents and three siblings but his health deteriorated rapidly after surgery in June to remove a band that had been put around his pulmonary artery.  The boy was put on ECMO.  After a month on the machine, doctors saw no improvement in his condition and his lungs and airways remained blocked while they had to give him increasingly heavy sedation. The longer patients are on ECMO, the more likely they are to develop infections and so suffer a sudden and painful death.



THE FAMILY'S POSITION

Clinicians determined that there was no prospect of his heart or lungs recovering and therefore no hope of survival."  But the boy’s parents refused to give their consent and at the last minute instructed lawyers to challenge the hospital’s application in the court.  



The boy’s mother said that although she accepted the medical evidence, she believed her son was still aware of her when she came into the ward, and that the family had not lost hope.  “Unexpected things can happen and because of [the boy’s] faith and my trust in God and my understanding that he is the one who gave him life he is the one alone who can end that life, I cannot agree to the lifeline of oxygen being taken away from him. God could intervene in a miraculous way.”  The mother said that although the family were not afraid of the boy dying, they did not believe it was their place or that of doctors to shorten his life and it would be a “betrayal of trust” if they did so.

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Seven Myths about Getting Old

Clinician recommendations to forgo curative treatment and/or life-sustaining treatment are often driven by clinician ageism rather than by the patient's health.  Here is a nice reminder that age only loosely correlates to declining health status and reduced medical possibilities: "Seven Myths of Getting Old."

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Limits of End-of-Life Prognostication

This month's The Hospitalist includes a basic review of some of the limits to end-of-life prognostication.  Among other things, the article includes a table summarizing several helpful end-of-life prediction tools.  But as critical care medicine superstar Randy Curtis puts it, "Predictions really apply to groups of people, not individuals. . . .  Physicians can't possibly know whether someone will fall into the 95% of patients who die or the 5% of patients who beat the odds."  

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The Shadow 'OF' of Courts and the Shadow 'ON' the Courts in Medical Disputes

In the United States, we often speak of the "shadow of the law" on informal dispute resolution.  In China, it appears that there is an opposite phenomenon: the shadow of informal dispute resolution on the courts.





In a new article forthcoming in the Columbia Law Review, Benjamin Liebman discusses "Malpractice Mobs: Medical Dispute Resolution in China."



Liebman describes a trend toward resolution of claims through protest and violence.  He writes that "Hospital officials, judges, and health department officials acknowledge that whether or not they face a protest or threat thereof is generally the most important factor influencing resolution of medical disputes."

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Health Law Mediation Training

Mediation Training 

Offered by the AHLA Alternative Dispute Resolution Service in partnership with the Hamline University School of Law, a leader in dispute resolution and health law



Mediation Training: Friday, October 19, 2012 from 8:30 am-5:30 pm (Central); Saturday, October 20, 2012 from 8:30 am-5:30 pm; and Sunday, October 21, 2012 from 8:30 am-12:30 pm.


You will acquire the knowledge and skills to mediate a health law dispute effectively and ethically. The training is highly interactive and provides extensive coaching and feedback. All participants will have the opportunity to practice mediating a case from start to finish.

Topics will include:         

• An overview of the mediation process and the mediator’s role


• Preparing for a productive mediation session


• How mediation begins


• Accumulating information and developing the agenda


• Generating movement


• Use of separate sessions (caucuses) 


• Ending the mediation (with and without agreement)


• Mediation ethics


• An opportunity for everyone to conduct a mediation from start to finish observed by a coach who will give individualized feedback

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"Saving Hope" Dramatization of CCB Hearing

In "Heartsick," this week's episode of Saving Hope, Charlie was an
incapacitated patient.  Charlie's ex-wife and fiance, Alex and Dawn, disagreed about his
treatment plan.  They argued their cases in front of a Consent and
Capacity Board panel.




Alex and Dawn had
very different views of what Charlie would want. Dawn believed he'd want to die
with dignity and never want to be in a helpless, vegetative state for the rest
of his life. Alex was insistent that Charlie was still in there and he would
want to try everything possible so he could fight to come back. Each woman had
various pieces of evidence to back up her claims.

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Death Denial - Norman Rockwell

I was intrigued by this painting, " Second Holiday," that I saw yesterday afternoon at the Cummer Museum in Jacksonville, Florida.  Norman Rockwell created this illustration for a short story in American Magazine in 1939. The short story takes place at a clinic in Minnesota, where an elderly couple sits in a waiting room. 




Avoiding eye contact, the man and woman sit side by side and stare into space as their arms intertwine. The couple thinks of their visit to the clinic as a “holiday” due to the fact that it is only their “second” time away from their hometown in decades. And although the elderly woman is sick and dying, both the husband and the wife refuse to accept this reality in order to protect and support one other.

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ASBH 2012 Annual Meeting - Brochure

The 2012 Annual Meeting brochure for ASBH is now available here.

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NHS Trust v. Baby X - British Court Orders Baby Removed from Ventilator over Parents' Objections

Mr Justice Hedley at London's High Court has
ruled that a brain-damaged
baby should be allowed to die even though his deeply religious parents want him
kept alive on a life-support machine.  (The reported case opinion is here.)  

The one-year-old had a
'catastrophic accident' in May and is in a coma.  But Justice Hedley ruled
that it's in the child's best interests if he is now given palliative care.
 He said it was 'unrealistic' that his condition would ever improve and
said doctors had told him that any treatment had now become 'futile'.  

The parents said their
faith meant that they have resisted switching off their son's life support
machine, and said they believed that 'where there's life there's hope'.  But consultants told the
judge that the child lacked awareness of his surroundings, showed no
interaction or recognition of his parents and didn't cry or smile. One
doctor said: 'In my opinion Baby X no longer has the human instinct and desire
to survive'.

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In re GS: Ontario CCB Permits Hospital to Stop Heroic Measures

The Ontario Consent and
Capacity Board has ruled that an Ottawa hospital can stop
"heroic measures" for GS, a 90-year-old car crash victim.  (The
Reason for Decision is here.)
 

The patient's daughter and substitute decision maker objected.
 But the CCB ruled that the daughter was bound by GS's advance directive.
 The board also deemed the proposed treatment plan to be in GS’s best
interests. “Nothing in evidence suggested that, in these circumstances, GS
would want to be subject to unnecessary medical interventions … All of the
evidence made plain that GS had a very poor quality of life and that the
situation would not improve. GS was subjected to daily indignities through
invasive medical procedures without increasing the likelihood that he would
recover any awareness or consciousness.”

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Delaware End-of-Life Coalition

I was pleased to see that the Delaware End-of-Life Coalition, an organization with which I was involved when I worked in Delaware 2007-2011, has launched a fresh, new website.  

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