Reading Hospital Resolves Futility Dispute by Replacing Guardian

In March 2012, Russell Border was admitted to the ICU at Reading Hospital and Medical Center. As a patient in the ICU, doctors placed Mr. Border on a mechanical ventilator and other forms of life-sustaining treatment. During this time, Mr. Border's treating physician and other Hospital personnel contacted his court-appointed guardian, Sharon Gray, explaining that Mr. Border's health condition was both terminal and futile.  (The court's recitation of the medical testimony is appropriately both extensive and graphic.)

Hospital personnel recommended that, as guardian of his person, Gray authorize the removal of Mr. Border's life-support. Mr. Border's family, including his wife, brother, sister, sister-in-law, and both adult daughters, all agreed with the Hospital's recommendation. Gray, however, disagreed and asserted her authority as guardian of Mr. Border's person to prohibit the removal of his life-support.  

Unable to resolve the conflict, the Hospital filed a petition with the Berks County, Pa. Court of Common Pleas, seeking the removal of Gray as Mr. Border's guardian.  The court granted the petition and replaced the guardian.  This order was affirmed last week by the Superior Court of Pennsylvania.  (The new guardian immediately consented to the removal of life support and Mr. Border died the same day.)

Notably, Border's advance directive indicated that he would want life-sustaining treatment in his current condition.  So, Gray felt that she was being a faithful and diligent guardian by demanding that treatment.  But Border also indicated that his elections were to serve only as a "general guide" and could be altered if alteration was in his best interest.  

The court held that alteration was in Border's best interest.  Consequently, by refusing to authorize the termination of Border's life-sustaining treatment, Gray ceased acting in his best interest.  The appointment of a new guardian was appropriate.  I have been defending (and here) surrogate replacement as a mechanism for resolving futility conflicts.  This case is a good example.

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TS & DS v Sydney Children's Hospital Network (" Mohammed 's case")

I was updating my collection of adjudicated medical futility disputes when I noticed that I forgot to post a case decided at the end of 2012:  TS & DS v Sydney Children's Hospital Network (" Mohammed 's case").  



In this case, the New South Wales Supreme Court refused a parental request for a terminally ill baby to be placed on a mechanical ventilator.  The nine-month-old baby, Mohammed, was severely brain-damaged, deaf and blind.  



THE PARENTS

Mohammed's parents filed an emergency application with the NSW Supreme Court just before Christmas 2012, seeking an order compelling medical staff to treat their son by means of mechanical ventilation.  



They said their son should be given any treatment that could help him breathe.  They said he would then have a chance to resist, or better cope with, his other illnesses. They said Mohammed had survived the first nine months of his life because he was a "fighter" and, if given the chance, he would continue to fight for his health and life for as long as possible.



THE CLINICIANS

Doctors at The Children's Hospital at Westmead, where he has been treated since the age of two months, believed he had only weeks or months to live.  They submitted it was not in the baby's best interests to be placed on a ventilator.  They argued that since Mohammed's condition was terminal, the risks associated with ventilation and the pain and distress it would cause significantly outweighed any benefit Mohammed would receive.  Instead, they said he should be given pain relief and palliative care.



THE COURT

Justice Garling denied the parents' application.  He found that placing Mohammed on a mechanical ventilator would not cure his condition, nor play any role in a better outcome.  "Mohammed's life is to be measured in the short term. . . .  He should not be subjected to pain and discomfort for the remainder of his life by being placed on mechanical ventilation from which he will not be weaned."

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Joanne Lynn on Comfortable & Meaningful End of Life

Joanne Lynn, MD, is a geriatrician, hospice physician, health services researcher, quality improvement advisor, and policy advocate.  She leads the Altarum Institute Center on Elder Care and Advanced Illness.  



In this brief video, Dr. Lynn focuses on

• Shaping American health care so that every person can count on living comfortably and meaningfully through the period of serious illness and disability in the last years of life, at a sustainable cost to the community


• Why are we still using 20-year-old SUPPORT data to guide end-of-life medicine and social support

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Oklahoma Prohibits Critical Care Clinicians from Stopping Requested Life Support

On Friday. Oklahoma Governor Mary Fallin signed House Bill 1403.  This measure is aimed at preventing health-care providers from denying possibly life-extending treatment based on the patient's quality of life.  This makes Oklahoma join Idaho, New York, and other states that I have been calling "red light" states.



Critics of H.B. 1403 said it would make for bad medicine, drive doctors from the state and increase uncompensated medical costs. 



Supporters said it would prevent the denial of care based on the view of a third party that the patient's life is of poor quality or is not worth living.  Oklahomans for Life says "The patient's desire to receive care should be respected even though a third party might question the 'quality' of the patient's life." 

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Online Capacity Assessment Curriculum for Clinicians

Rush University Medical Center’s online capacity assessment curriculum for clinicians is beginning a new enrollment session on May 13.  CME, CEU and CME credits are available.



The curriculum features six modules:

1. The importance of evaluating patients’ capacities


2. Key principles and practices


3. The evaluation process and content


4. Specific capacities and situation


5. When to conduct an evaluation yourself and when to refer


6. Working with courts in guardianship proceedings

The curriculum also includes videos, a pocket reference card, a glossary, and a resource list, and is downloadable. 

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Burke Balch on Risks in Texas S.B. 303

Balch and NRLC seem to take a far more reasonable approach to analyzing this legislation than others accuse them of taking.  They are looking out for fairness and patient rights.  The Texas Catholic Conference, in contrast, is just concerned with whether the legislation is consistent with Catholic principles.  

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Not Dead Yet Urges Federal Action on Medical Futility Laws & Policies

I was surprised to find myself in almost total agreement with these remarks that Diane Coleman made earlier this week to the independent federal agency, National Council on Disability.  



As I have written, the process for unilateral refusal of life-sustaining treatment must be sufficiently fair.  Otherwise, the risk of bias (and corruption and arbitrariness) is unacceptably high.  I am not sure, as NDY is, that the risk has materialized.  But it should be mitigated nonetheless.



I’m commenting today to urge NCD to take a leadership position in addressing the problem of so-called futile care laws and policies which allow doctors to deny life-sustaining treatment to people with disabilities who want and need it. The common thread running through stories we hear is that our lives with disability are seen as less worth living, so much less that health care providers too often think that death is the correct course. They press this viewpoint on us, our families and sometimes even overrule us when we disagree.



Futility policies are not a new thing, but there are indications that doctors have become increasingly comfortable using them to withdraw life-sustaining treatment to end our lives. They provide doctors a legal safe harbor to act based on whatever medical predictions and quality of life judgments that they may feel are consistent with community standards.



Texas has the most infamous futility law, which requires an ethics committee consultation and then, after only 10 days, allows doctors and hospitals to withdraw treatment. Repeated efforts to amend the Texas law have failed. This year’s amendment proposal is so weak that disability advocates have had to oppose it. Bob Kafka, a national ADAPT leader who is also the head of Not Dead Yet of Texas, testified against SB 303:

“Our opposition … is based on our experiences with the medical community, who with all good intentions, make recommendations / decisions that if implemented would have resulted in the death of people who now are living members of our organizations. . . . Right now most of the appeal process is focused on ethics committees in hospitals that have them. Currently there are no standards for ethics committees in regard to size, membership, procedures or even having one. We believe that there is an inherent conflict of interest to have a committee convened at the hospital that the doctors have privileges.  ADAPT/NDY recommends that a conflict free process outside of the hospital setting be established that has substantial membership of the disability community as members.”

Last year the National Disability Rights Network issued a report condemning decisions to withhold medical treatment from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of our basic constitutional rights. The report states that reliance on ethics committees and consultations is insufficient protection.



I’ve communicated with protection and advocacy (P&A) attorneys in several states who had to go to court to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital. Because of P&A intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana and Pennsylvania. That’s just from my limited knowledge.



What I think the NDRN report tells us is that this futility problem is huge and we’ve just seen the tip of the iceberg. Some groundwork has been laid, but serous work remains to be done and I hope that NCD will help lead that effort.

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Okla. H.B.1403 "Nondiscrimination in Treatment Act" Requires Futile Treatment

It looks like Oklahoma will be following Idaho in enacting a "Nondiscrimination in Treatment Act."  While the title of H.B. 1403 seems innocuous, the result is basically a mandate to provide surrogate-requested "life-preserving health care services" even when those services are non-beneficial or even harmful to the patient.  



This bill passed the House in early March.  It passed the Senate two weeks ago.  It was sent to Governor Fallin on Monday.  Here is the key language:



A health care provider shall not deny to a patient a life-preserving health care service the provider provides to other patients, and the provision of which is directed by the patient or a person legally authorized to make health care decisions for the patient:

1. On the basis of a view that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than extending the life of an individual who is younger, non-disabled, or not terminally ill; or


2. On the basis of disagreement with how the patient or person legally authorized to make health care decisions for the patient values the trade-off between extending the length of the patient's life and the risk of disability.

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Equine Medical Futility - Case 2

A few weeks ago, I posted this clip of a medical futility dispute between a veterinarian and the owner of a horse.  Here is a clip from the same All Creatures Great and Small Series, depicting another vet trying to explain to another horse owner that medicine has nothing left to offer.

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In re Border (Pa.) - Guardian vs. Advance Directive

Yesterday, the Berks County, Pennsylvania Court of Common Pleas issued this interesting opinion analyzing the authority of  a guardian to withdraw life-sustaining treatment when the patient has an advance directive.

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S.B. 303 Amendment to Texas Advance Directives Act Now in Texas House

Yesterday, the Texas House of Representatives received S.B. 303 from the Texas Senate.  On Thursday, the Senate passed S.B. 303 by a vote 24 to 6.  The engrossed version of the bill is available here.  



If enacted, S.B. 303 would improve the "futility" provisions in the Texas Advance Directive Act, most notably by adding a reporting requirement.  But the bill fails to address the two most serious key fairness and procedural due process defects:  (1) the lack of a neutral decision make and (2) the lack of appellate review.

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Futility Decisions Are Like Gestalt Integrations

Daan den Hollander, a clinician in the Burns Unit at Inkosi Albert Luthuli Central Hospital (South Africa) has published "Medical Futility and the Burns Patient" in Burns.  



I liked this article, because so much of the debate over futility and non-beneficial care is focused on the ICU.  It is refreshing to examine the issues in a new context (burns).  I also liked the following excerpt on definitions.

The philosopher Ludwig Wittgenstein once remarked that we cannot describe the sound of a clarinet, or the smell of a rose. No-one can describe the face of their partner in such detail that someone who never met them would be able to recognize them if they ran into them. But that does not imply we do not know them.

. . . .  Futility decisions are much like Gestalt integrations.  Recognizing a futile situation has often more similarity with recognizing a face than with applying a list of rules. That brings to the fore the question who is best qualified to recognize futility situations, and expertise must play a role in this.

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Free End-of-Life Counseling

Compassion & Choices offers End-of-Life Counseling.  This is free, confidential, professional support anywhere in the country.  Compassion & Choices counselors will listen to your unique situation and answer your questions whether you want to improve the quality of life you have left, achieve a peaceful death or simply plan ahead.



Over 100 expert staff and volunteers stand ready to serve in every state. We help with advance directives, local referrals, information and support on end-of-life care and decision making.  Call 800.247.7421 or email.  Here are some of their general FAQs.



Q: What should I expect when I talk to a counselor?

• Our 800 number connects you with a confidential voicemail system, and we check messages at least twice daily. A trained professional counselor will then call back to answer all your questions, find out more about you and allow you to talk openly.

Q: How do I discuss my end-of-life wishes with my doctor or family members?

• Plainly, simply and honestly. Speaking with one of our end-of-life counselors often helps people clarify their goals so they can more easily communicate them to others.

Q: Where can I find information about advance directives?

• You can find information and advance directive forms for every state on our advance planning information page. If you have difficulty completing them, one of our end-of-life counselors will gladly assist you.

Q: If I live in a state with no law protecting aid in dying, should I move to Oregon or Washington?

• No; there are many options available to people across the nation, which an end-of-life counselor can explain to you. Compassion & Choices wants everyone with a terminal illness to have a peaceful death no matter which state they live in.

Q: Where can I get the pill to end my life?

• This is the question we hear most often, and people ask it with many different things in mind. In certain cases a lethal dose of medication, prescribed by a physician and self-ingested, can be the best path to a gentle death. After a thorough conversation with you and perhaps your family, our counselors may provide information regarding medication and how to obtain it.

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Tylenol Can Facilitate Advance Care Planning

Significant amounts of over-treatment in the United States are due to a persistent widespread failure to do advance care planning.  Most people do not want aggressive curative directed treatment at the end of life.  But most leave no instructions or informed surrogates to implement such wishes.  One reason for the lack of advance care planning is anxiety about discussing death.




University of British Columbia researchers may have found an inexpensive and easy solution:  the over-the-counter pain drug Tylenol. Typically known to relieve physical pain, the study suggests that Tylenol may also reduce the psychological effects of fear and anxiety over the human condition, or existential dread.



“Pain exists in many forms, including the distress that people feel when exposed to thoughts of existential uncertainty and death,” says lead author Daniel Randles, UBC Dept. of Psychology. “Our study suggests these anxieties may be processed as ‘pain’ by the brain – but Tylenol seems to inhibit the signal telling the brain that something is wrong.”



"The Common Pain of Surrealism and Death: Acetaminophen Reduces Compensatory Affirmation Following Meaning Threats" is in the Association for Psychological Science journal Psychological Science.



Perhaps, next year, community organizers at National Healthcare Decisions Day events across the country will include a bottle of Tylenol next to the Five Wishes forms and cookies.

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Legal Issues Concerning Withholding and Withdrawal of Dialysis

The dynamic Australian health law professor Cameron Stewart and a physician colleague have published "Legal issues concerning withholding and withdrawal of dialysis" in Nephrology.  The in-press article is available as a free download.  



The article is a general overview of legal principles concerning healthcare decision making.  Among these, is some good analysis of medical futility.  For example:  "The law does not obligate a nephrologist to provide treatment that they believe is of no benefit to the patient or that any benefit is outweighed by the burdens of the treatment . . . ." 

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Medical Futility Policy Transparency

I have a new post on "Medical Futility Policy Transparency" at bioethics.net.

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Minnesota Court of Appeals to Decide Guardian Power to Stop Life Support

On October 18, 2012, the Hennepin County (MN) District Court issued a written opinion in In re Tschumy, holding that guardians under the court’s jurisdiction must ask the court for authorization to terminate life support.  



That decision was appealed.  After some preliminary briefing on jurisdiction, the Court of Appeals has agreed to hear the case on the merits on May 15, 2013 at 10:40 a.m.

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Daughter Sues Florida Hospital for Failing to Implement DNAR Order

A lawsuit (docket here) filed in Polk County, Florida, earlier this
month, alleges that Lakeland
Regional Medical Center failed to send a copy of Marjorie
Mangiaruca's DNAR order with her when it transferred her to Oakbridge
Healthcare Center.  LRMC didn't tell the people transporting her to the nursing home that she
had a DNAR order and didn't alert the nursing home she was a DNAR patient.

A few days after the transfer, Oakbridge nurses found Mangiaruca not
breathing and unresponsive.  What happened next should not have happened
to a DNAR patient:

• Oakbridge called 911.  


• When Mangiaruca's heart stopped en route to the hospital EMTs did CPR.  


• When that did not work, EMTs put a hole in her neck and
  inserted an airway tube.  They injected drugs to restart her heart and
  paralyze her so she couldn't resist intervention.


• At the hospital, clinicians removed the tube inserted
  by the EMTs and put in another tube that was connected to a ventilator.  


• A feeding tube also was installed.


• Mangiaruca wwas transferred to a medical ICU.

Only days later were these interventions deescalated.  Hospital staff followed the daughter's direction to remove the breathing tube and
disconnect Mangiaruca from the ventilator.  She died five days later in a
palliative care unit.  In short, Mangiaruca's wishes were ignored and
her death was prolonged.  

It is worth noting that one of the most significant cases concerning unwanted
life-sustaining treatment was also a Florida
case.  I have collected
many similar cases here.  I have analyzed the law concerning the
administration of unwanted treatment here.

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New Medical Futility Cases

I have updated my collection of court and agency cases concerning medical futility disputes.  I have collected all the PDF documents together here.  

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Death & Dying Cases Before the Minnesota Supreme Court - Part II

On Monday, May 13, the Minnesota Supreme Court will hear oral arguments in State v. Melchert-Dinkel. 



The issue is whether Minnesota Statutes section 609.215, subdivision 1, which criminalizes advising, encouraging, or assisting another to commit suicide, is unconstitutionally overbroad under the First Amendment.  



In July 2012, the Court of Appeals held that the First Amendment does not bar the state from prosecuting a person for advising, encouraging, or assisting another to commit suicide by sending coercive messages to suicide-contemplating Internet users instructing them how to kill themselves and coaxing them to do so.

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Death & Dying Cases Before the Minnesota Supreme Court - Part I

This Wednesday, the Minnesota Supreme Court will hear oral arguments in State v. Smith.  A video of the arguments will be available here.  Here is a summary of the issues.



Eddie Smith was driving a car at a speed of more than 50 miles per hour in a residential neighborhood when he hit another car in which 93-year-old Edith Schouveller was a passenger.  Smith had an alcohol concentration of .11 shortly after the accident. 



Schouveller’s spinal cord was fractured during the accident.  She spent 13 days in the hospital and was then transferred to a nursing home and rehabilitation care center.  After two days at the nursing home, she was admitted to the hospital and diagnosed with pneumonia.  Several days later, doctors determined that Schouveller required intubation.  Schouveller, however, had executed a living will with a do-not-resuscitate order specifying that she not be intubated.  Doctors did not intubate Schouveller, and she died later that evening.



After a jury trial, Smith was convicted, in part, of criminal vehicular homicide.  The court of appeals affirmed Smith’s conviction.



On appeal to the supreme court, Smith raises the following issues in his brief:  (1)  whether the State failed to prove that Smith caused the death of Schouveller; (2) whether Schouveller’s do-not-resuscitate order was a superseding cause of Schouveller’s death; and (3) whether Smith is entitled to a new trial because the district court failed to instruct the jury on the effect of a finding that something was a superseding cause of Schouveller’s death.  

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Scary Frequent Violations of Patient Rights

Annette M. Browning's article in the March 2013 American Journal of Critical Care is about moral distress among critical care nurses.  But just look at this table summarizing the sources of this distress:  e.g. deception, inadequate consent.  These things happen with alarming frequency.

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Hospital Promises to "Cheat Death"

On Friday, North Carolina's CaroMont Health unveiled a new campaign "To Give Every Man, Woman and Child In Gaston County Every Opportunity To Cheat Death."  The announcement ended with this toast: "May you never lie, steal or cheat.  But if you must lie, lie with the one you love. If you must steal, steal kisses.  If you must cheat, cheat death."

I have blogged before (e.g. here)
about hospitals that promise miracles.  Such
representations, even more than the inaccurately-high CPR success rate
portrayed on broadcast shows, lead families to have unrealistically high
expectations. It is hard to recommend palliative, rather than curative care,
after one has already promised a miracle. And surrogate belief in miracles
continues to be one of the most significant causes of intractable futility
disputes.

But to be fair, CaroMont Health's tag line is focused more on its efforts to promote public health than on its hospital care.  "We are not saying we can stop death.  What we are saying is that if you take an active part in your own health—being more active, making better nutritional choices, stop smoking—you can live a longer, healthier and ultimately happier life."  This is not just appropriate but commendable. Nevertheless, this could be misunderstood by hospital and ICU patients as applying to them.

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Transfer Resolves Medical Futility Case for Kesell Macias

A few days ago, I blogged that Scripps Mercy planned to stop life-Kesell Macias' life-sustaining treatment over the objections of his family.  Apparently, the hospital changed course.  It agreed to provide the family with a second opinion.  Now, Macias has been transferred to UC Irvine Medical Center.  



The California Probate Code section that permits a health care provider to "decline to comply with an individual health care instruction or health care decision" also requires the provider to "make all reasonable efforts to assist in the transfer of the patient to



another health care provider or institution that is willing to comply

with the instruction or decision."  Normally, such transfers are not found.  But when they are, everyone gets what they want.  Except maybe the patient.

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Mindful Practice - Focus on Serious & Life-Limiting Illness

This looks like a valuable workshop in New York from May 1 to 4, with faculty Ron Epstein, Tony Back, Tim Quill, and Peter Sullivan.



Summary



With the aging of the baby boom generation, health care reform and advances in medical technology, clinicians face increasingly complex and difficult situations involving care of patients with serious and life-limiting illnesses. These illnesses, including but not limited to metastatic cancer, neurodegenerative diseases, heart failure and multi-organ failure, present both biomedical and personal challenges to the clinicians who provide such care. Yet, in their clinical training, those who provide this care receive little education and support to develop the attentiveness, skills and personal resilience required to approach this work with compassion and presence, and to prevent burnout. These challenges are amplified by the increasing pace, complexity, regulatory requirements and financial challenges of medical practice.



Workshop Goals and Objectives



This workshop is designed to improve the quality of care that clinicians provide while improving their own resilience and well-being. This program will develop participants’ capacity for mindfulness in clinical practice and education – attentiveness, situation awareness, self-awareness, teamwork and self-monitoring in stressful and demanding situations – with the intention of providing better care to patients and to take better care of ourselves. Themes of the workshop sessions will include difficult discussions with patients and families, witnessing and responding to suffering, symptom management, difficult decisions, uncertainty, end-of-life care, ethical dilemmas, working in teams, self-care and compassion. Sessions incorporate interactive presentations, formal and informal mindfulness practice, narrative and appreciative dialogue exercises, and discussion.



Intended Audience



For medical practitioners (physicians, NPs, PAs) and educators who work in Intensive/Critical Care, Hospital Medicine, Oncology, Primary Care, Palliative Care, Hospice and other settings in which clinicians face serious illness and mortality.

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6th International Symposium on Brain Death and Disorders of Consciousness

The 6th International Symposium on Brain Death and Disorders of Consciousness will be held, in Havana, Cuba, on December 3-6, 2013.  There are two main themes:





BRAIN DEATH

• Conceptual approach to human death


• BD criteria in different countries


• Ancillary tests in BD


• Autonomic nervous system assessment in BD


• BD in childhood


• Anencephalic infants


• End-of-life dilemmas: terminal patient, euthanasia, assisted suicide, etc.


• Legal considerations surrounding BD and related states


• Philosophical, theological, sociological, historical and cultural considerations of human death


• Organ transplantation

DISORDERS OF CONSCIOUSNESS

• Pathophysiological mechanisms of consciousness generation


• Coma, persistent vegetative state (PVS), minimally conscious state (MCS), and other DOC


• Clinical diagnosis of DOC


• Neuroimaging techniques for assessing DOC


• Neurophysiologic tests for assessing DOC


• Autonomic nervous system assessment of DOC


• Neurorehabilitation of DOC


• Neuroprotection and Neuromonitoring of DOC


• New trends in cardio-pulmonar-cerebral resuscitation

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Minnesota Appeals Ruling that Assisted Suicide Statute Is Unconstitutional

Minnesota's criminal case against the Final Exit Network is proceeding to the court of appeals.  Back at the Dakota County criminal court in December, FEN argued that while the state may bar someone from “assisting” a suicide, it is unconstitutional for the state to ban merely “advising” or “encouraging” a suicide — as stated in the Minnesota statute — because that is pure speech.  



In March, Judge Karen Asphaug found Minnesota’s law  unconstitutionally overbroad. She also narrowed the construction of the term “encouraging” to include only physical acts or language that promote or urge someone to commit suicide.  Based on that finding, Asphaug dismissed charges against the group’s former president, Thomas Goodwin, but kept most of the charges against the other defendants intact.



Dakota County Attorney James Backstrom said his office will not appeal Goodwin’s dismissal, but will contest the ruling as it relates to the group itself and to defendants Lawrence Egbert and Roberta Massey.

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Clinicians Ignore Patients' EOL Preferences

In an alarming new report in
JAMA Internal Medicine, researchers found that clinicians not only fail to
solicit patient treatment preferences at end-of-life, but even when those preferences are recorded, agreement between patients'
expressed preferences for EOL care and documentation in the medical record was
only 30%.  I address this from a legal perspective in this forthcoming law review article.

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New Hospital Inspection Report Database by AHJC

A few months ago, I blogged about ProPublica's new tool for searching nursing home inspection reports.  Now, the Association of Health Care Journalists has launched a new website that makes federal hospital inspection reports easier to access, search and analyze.  



The new site includes details about deficiencies cited during complaint inspections at acute-care and critical access hospitals throughout the United States since Jan. 1, 2011.  This effort follows years of advocacy by AHCJ to encourage federal officials to publish this information electronically. Until now, this information has only been available through Freedom of Information Act requests – and only in paper form. 

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2014 World Federation Right to Die Societies (WFRTD) 20th Biennial Conference

Final Exit Network, host for the World Federation Right to Die (WFRTD) Societies Meeting, has announced the venue for the 2014 World Federation 20th Biennial Conference.  The date of the conference is September 17 to 21, 2014, Wednesday through Sunday, and it will be held at the Embassy Suites Downtown/Lakefront Hotel, Chicago, Illinois.



The conference venue is the flagship hotel of U.S. Embassy Suites Hilton properties, an all-suites hotel with a sophisticated design concept and spectacular views of Chicago. All suites have a living room/work area, a wet bar, microwave, and refrigerator and two 37-inch TVs, one in the living room and one in the bedroom.  A full hot and cold breakfast and evening reception are included in the price of the room. 



Final Exit Network, has secured an excellent price with considerable savings for early registration — $190 per night for early hotel registration. Conference registration will be $325 for early registration.  Early conference registration will open June 2013; hotel registration opens September 2013.  



The FEN WF conference planning committee is creating an inspiring schedule with world-class speakers in the RTD movement.  With the theme “Dignity, Control, Choice – Around the World,” the committee is focusing on leaders who work on the front lines of legal and philosophical right to die issues throughout the world.  



Delegates will join FEN hosts to share the latest news, will have the opportunity to network with each other, and will work together to promote the agendas of RTD societies around the world.  Everyone is invited and welcome to join Final Exit Network hosts and World Federation delegates.  

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National Public Health Week

The first week of April is National Public Health Week.  Paradigm public health issues include tobacco, obesity, and diabetes.   But many of the end-of-life issues (like persistently low rates of ACP) discussed on this blog are also public health issues.  They affect giant portions of the population, can be prevented, and can be addressed through community-wide interventions.

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Newsome v. Gunnels - Clinicians Win Medical Futility Case

A few weeks ago, the Alabama Supreme Court affirmed summary judgment in favor of a clinician in a medical futility dispute.  The parents of twins born at 22.5 weeks alleged that clinicians failed to undertake medical effort to save the babies or prevent their delivery.  



The court did not issue a written opinion.  But it appears that the plaintiffs attempted to assert only a claim for intentional infliction of emotional distress (often not a bad strategy in such cases).  The defendants argued that this was really a medical malpractice case, requiring expert evidence that the plaintiffs never supplied.  Indeed, it may have been difficult for plaintiffs to find an expert to testify that the babies were viable and could have survived despite their extreme prematurity.



Here is the statement of facts from the plaintiffs' opening appellate brief.



Expecting twin babies, the Plaintiffs, Burton and Regina Newsome, chose St. Vincent's Hospital for the delivery, and the OB/GYN practice, with which Defendant Jeffrey Gunnells is associated, as Regina Newsome's doctor.  Before the birth, however, the individual doctor, whom the parents had chosen, suffered a death in the family, and they were re-assigned to the Defendant.



Regina Newsome is from Uzbekistan and has a strong accent. Upon meeting her, the Defendant abruptly asked her what her religion was.  Although a practicing Christian, her first response was that she is “half-Muslim,” ethnically-speaking. The Defendant's immediate response was negative, and he would not treat her.  She was assigned to a third doctor within the practice who was willing to treat her. 



Not long afterward, when she was between 22 and 23 weeks pregnant, Mrs. Newsome began to leak amniotic fluid, and, although her regular doctor told her this was normal, three days later, she was rushed to the St. Vincent's emergency room--where the Defendant was the doctor on call. 



The Defendant told the parents that their babies were dead and that nothing could be done.  Despite Mrs. Newsome's request, he refused to call in the first doctor (who had since returned to practice after his family tragedy). After four hours of labor, in which the Defendant treated Mrs. Newsome disrespectfully and without regard for the dire nature of the events, the babies were born alive. 



Despite the fact that they were clearly alive, crying and responding, the Defendant failed or refused to provide any medical care to the twin babies. Plaintiff Regina Newsome had begged Dr. Gunnels to call in the Neonatologists prior to giving birth to try and save the babies. The babies were never cleaned up but, instead, left to die before their parents' eyes. For over four hours more, the babies cried, with no assistance from the Defendant, dying there in the room with their distraught and bewildered parents.

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VSED in N.Y. Times

I was pleased to see the following brief commentary printed in yesterday's New York Times.

There is a “better way to die,” and it is legal in all 50 states. It is commonly called Voluntary Stopping of Eating and Drinking or Patient Refusal of Nutrition and Hydration. My mother chose this way to end her life when she was informed that her chemotherapy and radiation treatment for oral cancer had failed and she faced a death marked by pain and occlusion of her windpipe by the tumor that grew in her jaw. She was depressed when she was told her prognosis, but her demeanor reversed when she took control of her life and decided to die on her own terms, without having to suffer the final stages of her disease.

She decided to stop eating and drinking completely when she learned that hunger and thirst abate after only a day or two and there is no additional pain. She received visitors and dozed off and on for 10 days; on the 11th day she became less responsive, and on the 12th day she died peacefully.

The question is: Why don’t doctors inform patients of this option?

SUSAN SCHAFFER

Durham, N.C.

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