Liverpool Care Pathway: Warning for POLST?

Four months have elapsed since the report of the independent review of the Liverpool Care Pathway and the decision to phase out the Pathway over six to 12 months.  Many UK clinicians have already stopped using the LCP.  This is unfortunate since there is no appropriate replacement guidance in place.  

These developments in the UK cause me some worry about end-of-life tools here in the United States.  As I read about the occasional misuse of POLST, I hope that such rare instances do not similarly "bring down" what, for the overwhelming vast majority of patients and residents, has proven to be a very effective way to ensure that the treatment patients get is the treatment patients want.

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AALS Law, Medicine & Healthcare Section

I have just posted a copy of the 43-page 2013 newsletter of the Law, Medicine and Healthcare Section of the Association of American Law Schools (AALS).  



Check it out.  You will see that health law and bioethics professors in U.S. law schools are doing lots of important and fascinating work. 

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Supreme Court of Canada Denies Application for Leave to Appeal in Baby M

On Thursday, the Supreme Court of Canada denied the application for leave to appeal in D.L., et al. v. Director (Child, Youth and Family Enhancement Act), et al.  This was the case involving  two and a half year old Baby M who was permanently comatose and on life support  in an Alberta hospital.



In September 2012, an Alberta court directed, over the objections of Baby M's parents, that she be provided only with palliative care and that life-extending treatment be withdrawn.  Justice Ross concluded that "a life without awareness and totally supported by machines is not in accord with the best interests of any patient."



Notably, the parents were in custody and had been charged with serious criminal offences in relation to M (aggravated assault, criminal negligence and failing to provide the necessities of life). 



The physicians unanimously agreed that M’s condition was irreversible and that no further medical intervention was warranted. However, her parents refused to consent to the withdrawal of life support on the ground that their love for M and their religious beliefs precluded them from accepting the doctors’ recommendation. 



As I discussed (here and here), the court's decision was already upheld by the Ontario Court of Appeal.  And a stay was already denied by the Supreme Court of Canada.  



Indeed, the denial of appeal is unsurprising.  The case is easy.  The objective best interest analysis is bolstered by the child abuse case.  Since the parents were charged with inflicting the injuries that caused Baby M to be in a vegetative state, they were probably not the best decision makers.  They likely did not have Baby M's "best interest" in mind, but instead were likely concerned with their own exposure to increased criminal sanctions.

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Vote for Medical Futility Blog

This is your weekly reminder to VOTE for the Medical Futility Blog in the 2013 ABA Journal Blawg 100.  

Polls remain open until December 20.

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Prolonging Life for the Sole Purpose of Prolonging It?

"We have inadvertently trained our young doctors to consider it a virtue to prolong life for the sole purpose of prolonging it."

-- James Howard Means (1963)

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Hamline Health Law Institute - Video

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Scrooge on Worthwhile Life

This weekend, I made my annual visit to a local production of Dickens, A Christmas Carol.  The following exchange reminded me about the importance of humility in determining what medicine should be offered or covered.



"Spirit," said Scrooge, with an interest he had never felt before,"tell me if Tiny Tim will live."



"I see a vacant seat," replied the Ghost, "in the poor chimney-corner, and a crutch without an owner, carefully preserved. If these shadows remain unaltered by the Future, the child will die."



"No, no," said Scrooge. "Oh, no, kind Spirit. Say he will be spared."



"If these shadows remain unaltered by the Future, none other of my race," returned the Ghost, "will find him here. What then? If he be like to die, he had better do it, and decrease the surplus population."



Scrooge hung his head to hear his own words quoted by the Spirit, and was overcome with penitence and grief.



"Man," said the Ghost, "if man you be in heart, not adamant, forbear that wicked cant until you have discovered What the surplus is, and Where it is. Will you decide what men shall live, what men shall die? It may be, that in the sight of Heaven, you are more worthless and less fit to live than millions like this poor man's child. Oh God! To hear the Insect on the leaf pronouncing on the too much life among his hungry brothers in the dust."

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Medical Futility Blog Chosen as one of ABA JOURNAL'S BLAWG 100

Medical Futility Blog has been chosen as one of the ABA JOURNAL'S BLAWG 100.  



Editors of the ABA Journal announced today they have selected Medical Futility Blog as one of the top 100 best blogs for a legal audience.



Now that the editors have made their picks, the ABA Journal is asking readers to weigh in and vote on their favorites in each of the 7th Annual Blawg 100's 13 categories. Go to http://www.abajournal.com/blawg100 to register and vote. Voting ends at close of business on Dec. 20, 2013.



About the ABA Journal:



The ABA Journal is the flagship magazine of the American Bar Association, and it is read by half of the nation's 1.1 million lawyers every month. It covers the trends, people and finances of the legal profession from Wall Street to Main Street to Pennsylvania Avenue. ABAJournal.com features breaking legal news updated as it happens by staff reporters throughout every business day, a directory of more than 3,600 lawyer blogs, and the full contents of the magazine.



About the ABA:



With nearly 400,000 members, the American Bar Association is the largest voluntary professional membership organization in the world. As the national voice of the legal profession, the ABA works to improve the administration of justice, promotes programs that assist lawyers and judges in their work, accredits law schools, provides continuing legal education, and works to build public understanding around the world of the importance of the rule of law.

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Cuthbertson v. Rasouli: Limited Guidance from Supreme Court of Canada

I just posted "Cuthbertson v. Rasouli: Limited Guidance from Supreme Court of Canada" over at the AJOB blog.

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Ethical & Legal Obligations of Hospice Staff When Their Patients Receive Aid in Dying

In 2013, the Greenwall Foundation announced the funding of a new bioethics grants program, "Making a Difference in Real-World Bioethics Dilemmas." This program is designed to support research to "help resolve an important emerging or unanswered bioethics problem in clinical care, biomedical research, public health practice, or public policy."  The Foundation explained that its goal for these grants is to have a "real-world, practical impact." 

Last month, the Foundation made an award and decided to fund the following project that I will be conducting with David Casarett at Penn. 



The overarching goal of our "Making a Difference" proposal is to rigorously address the following three questions in a structured way, providing ethical guidance to the hospice industry:

1. What obligation do hospice staff have to report instances in which they believe that a patient may have received assistance in committing suicide from a friend or family member?


2. What obligation do hospice staff have to report instances in which they believe that a patient may have received assistance from a health care provider (in states where such assistance is illegal)?


3. What are the key components of hospice policies that could provide guidance for hospice employees regarding their reporting obligations?

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End-of-Life Care: Desensitizing or Sensitizing?

Bobby Schindler recently wrote that the "vast majority of the mainstream media, by the manner in which they report on this issue, [are] desensitizing the general public when it comes to how we treat our medically vulnerable."



It never ceases to amaze me how people can look at opposite sides of the same coin and see such different things.  The same efforts that Schindler characterizes as "desensitizing" are seen and defended my many others as appropriately "sensitizing" individuals and society about the importance of advance care planning.

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Patrik Hutzel & Intensive Care Hotline

Australian ICU nurse Patrik Hutzel has a great website and video blog directed at family members who have a critically ill loved one in Intensive Care.  His goal is to empower family members so that they can exercise power, influence decision making and stay in control of this challenging and difficult situation.  



Here is one segment on medical futility.

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Pew Report: Views on End-of-Life Medical Treatments

Today, the Pew Research Center released a new report titled Views on End-of-Life Medical Treatments.



The report totals nearly 90 pages.  But one of the top-line takeaways is this:  "When asked about end-of-life decisions for other people, two-thirds of Americans (66%) say there are at least some situations in which a patient should be allowed to die, while nearly a third (31%) say that medical professionals always should do everything possible to save a patient’s life."



"Over the last quarter-century, the balance of opinion has moved modestly away from the majority position on this issue. While still a minority, the share of the public that says doctors and nurses should do everything possible to save a patient’s life has gone up 9 percentage points since 2005 and 16 points since 1990."

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The "Indecence" of Vegetating in Cowardly Dependence

In 1888, when he was the same age as I am now, Friedrich Nietzsche wrote Twilight of the Idols, or, How to Philosophize with a Hammer (free translation).  



In section 36 of the chapter titled "Skirmishes of an Untimely Man," Nietzsche addresses "morality for physicians":

The sick man is a parasite of society. In a certain state it is indecent to live longer. To go on vegetating in cowardly dependence on physicians and machinations, after the meaning of life, the right to life, has been lost, that ought to prompt a profound contempt in society. . . .   

To die proudly when it is no longer possible to live proudly. Death freely chosen, death at the right time, brightly and cheerfully accomplished amid children and witnesses: then a real farewell is still possible, as the one who is taking leave is still there; also a real estimate of what one has achieved and what one has wished, drawing the sum of one's life — all in opposition to the wretched and revolting comedy that Christianity has made of the hour of death. 

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Recognition for Medical Futility Blog

This blog was reviewed in the November 2013 issue of Internet Law Researcher (18 No. 10 at 11).

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Taiwan, Like USA, Delegates Too Much Power to Physicians

Yi-Chen Su recently published a critique of 2013 amendments to Taiwan's Hospice Palliative Care Law in the Journal of Medical Ethics.  I want to focus on his comments on Article 7.



Article 7 of the revised Hospice Palliative Care Law, effective since January 2013, authorised the palliative care team, namely the physicians, to take medical decisions on behalf of incompetent terminally ill patients who did not express their wishes while still competent and who have no family member, regarding the termination of life-sustaining treatment in accordance with the patient’s best interests. . . .



[T]he team could be composed solely of the two physicians who had previously confirmed that the patient was terminally ill.  . .  It is clear from the legislative history that the new law intended the treating doctors to take the decision to withdraw or withhold treatment if the patient was incompetent and no family members were available.



As I argue in a new Perspective column in this week's New England Journal of Medicine, many healthcare facilities in the United States similarly authorize physicians (with no oversight) to make treatment decisions on behalf of incapacitated patients without surrogates.  This unnecessarily exposes these patients to decisions that are corrupt, biased, arbitrary, and careless.

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The Growing Power of Healthcare Ethics Committees Heightens Due Process Concerns

I just posted a complete draft of "The Growing Power of Healthcare Ethics Committees Heightens Due Process Concerns" for the Cardozo Journal of Conflict Resolution.



This is an extension of my 2009 article "Multi-Institutional Healthcare Ethics Committees: The Procedurally Fair Internal Dispute Resolution Mechanism."  I later critically discussed ethics committees in AJOB and in the Journal of Clinical Ethics.  The new article is largely an update and summary of the legal status of healthcare ethics committees in the United States.  Here is the abstract:  



Complex ethical situations, such as end-of-life medical treatment disputes, occur on a regular basis in healthcare settings. Healthcare ethics committees (HECs) have been a leading dispute resolution forum for many of these conflicts. But while the function of HECs has evolved from mediation to adjudication, the form of HECs has not evolved to adapt to this expanded and more consequential function.

HECs are typically multidisciplinary groups comprised of representatives from different departments of the healthcare facility: medicine, nursing, law, pastoral care, and social work, for example. HECs were established to support and advise patients, families, and caregivers as they work together to find solutions for delicate circumstances.

HECs generally have been considered to play a mere advisory, facilitative role. But, increasingly, HECs have been playing a decision making role. Both in law and in practice, state governments and healthcare facilities have been giving HECs more authority to adjudicate conflicts and more responsibility for making treatment decisions. For example, HECs sometimes make decisions on behalf of incapacitated patients with no friends or family. Other times, HECs adjudicate medical treatment disputes between providers and the patient or patient’s family.

Unfortunately, HECs are not up to this task. They are not ready to evolve from being mere advisers to being deciders. HECs are overwhelmingly intramural bodies. That is, they are comprised of professionals employed directly or indirectly by the very same institution whose decision the HEC adjudicates. But a lack of neutrality and independence is not the only problem. HECs typically also lack sufficient diversity, composition, training, and resources. Consequently, HECs make decisions that suffer from risks of corruption, bias, carelessness, and arbitrariness.

In prior published work, I have argued that the adjudicatory authority of HECs be relocated to a multi-institutional HEC. Thereby, no single institution’s HEC would have a controlling voice in the adjudication of its own dispute. A multi-institutional HEC preserves the expertise and extrajudicial nature of HECs. But in contrast to an intramural HEC, a multi-institutional HEC possesses better resources, a greater diversity of perspectives, and the neutrality and independence required by due process.

In this Article, my primary objective is not to further articulate this or any other solution. Instead, the objective of this Article is to further articulate the problem. As the power of HECs grows, concern over HEC fairness grows. There is a direct and positive correlation between the power of HECs and the importance of developing a fairer dispute resolution mechanism that better accords with procedural due process. In short, because we are giving HECs more authority, we must demand more accountability.

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Compassion Should Prompt Us to Forgo Prolonged and Costly Treatment

In the 1950s, McGill neurosurgeon Wilder Penfield developed the "Montreal Procedure," a surgical technique that uses local anesthetic to keep the patient conscious and responding to questions while the surgeon stimulates parts of the brain. By using this method, Penfield created functional maps of the cortex (surface) of the brain.



Later, in the 1960s, after he left McGill, Penfield published The Second Career.  There, he argued that "there are times when compassion should prompt us to forgo prolonged and costly treatment."

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International Conference on End of Life: Law, Ethics, Policy and Practice 2014 (ICEL 2014)

The Queensland University of Technology Health Law Research Centre, Dalhousie Health Law Institute and Tsinghua Health Law Research Centre are presenting the International Conference on End of Life: Law, Ethics, Policy and Practice 2014 (ICEL 2014). 



The conference will be hosted by the Queensland University of Technology Health Law Research Centre in Brisbane, Queensland, Australia from 13-15 August 2014.  The Conference will provide a global forum at which health law scholars, bioethicists, legal and health practitioners, and health law and bioethics institutions can meet to discuss and present on law, ethics, policy and practice relating to the end of life, in particular around the conference’s four sub-themes:

1. Euthanasia and assisted suicide


2. Withholding and withdrawal of potentially life-sustaining treatment (e.g. advance care planning, futile treatment)


3. Terminal sedation and palliative care


4. Determination of death and organ and tissue donation.

Keynote conference speakers include:

• Professor Peter Singer, Ira W. DeCamp Professor of Bioethics, University Center for Human Values, Princeton University and Laureate Professor, Centre for Applied Philosophy and Public Ethics, University of Melbourne


• Professor Sheila McLean, Emeritus Professor of Law and Ethics in Medicine, Glasgow University


• Professor Jocelyn Downie, Professor in the Faculties of Law and Medicine, Dalhousie Health Law Institute, Dalhousie University


• Assistant Professor Charles Camosy, Assistant Professor of Christian Ethics, Fordham University


• Dr Peter Saul, Senior Intensive Care Specialist, John Hunter Hospital

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End of Life Care in a Changing Health Care Environment

A very nice panel presentation by Life Matters Media and the Chicago End-of-Life Coalition at Northwestern University in Chicago.

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125 Notable Sites on Hospice & Palliative Care

Check out this compilation of 125 Notable Sites on Hospice & Palliative Care, featuring Medical Futility Blog.  



Caring for the elderly, especially those who are ill or dying, is an important and noble career that many nurses and nursing assistants choose to pursue. NAG created this compilation to honor those who have chosen this path already, and to encourage its readers to consider the professional and personal rewards of providing comfort and care to people in the final stages of life. 

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National Healthcare Decisions Day 2014

Today marks five months to National Healthcare Decisions Day, on April 16, 2014.  

Please join the initiative by completing the short form here. And lead by example.  On or around Thanksgiving, please consider having “the conversation” with your loved ones. 

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Making Medical Decisions for Patients without Surrogates

I am delighted that the New England Journal of Medicine is publishing my Perspective article, "Making Medical Decisions for Patients without Surrogates."  



Treatment decision making for the unbefriended or unrepresented patient remains a big and persistent problem.  And few effective mechanisms are being developed to address the problem.  

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Mitigating Risks of POLST Abuse Increases Other Risks

Many are concerned that POLST might be abused by surrogates or clinicians to hasten the death of patients and residents who, were they fully informed of their prognosis, would not want their death hastened.



Most POLST statutes and laws have adequate safeguards to mitigate these risks.  But it is dangerous to erect too many safeguards or safeguards that are too onerous.  Once a "baseline" of safeguards is put into place, adding more offers zero or only small marginal benefit.  Yet, it imposes other material costs. 



For example, suppose that limiting signature authority to MDs had some small marginal benefit.  (In fact, most states eventually expand to NPs and PAs.)  It is surely not even a close balance that any such benefit would be greatly outweighed by the harm from thousands of LTC residents being unable to complete or update POLST due to limited access to MDs.  



Those who struggle too hard to limit or eliminate some small risks are increasing other greater risks, especially the risk of unwanted prolongation of life that the patient herself finds intolerable.  

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Resistance Is Futile...Or Is It?

The Borg's warning that "resistance is futile" proved wrong.  Similarly, the limits of prognostication mean that clinicians' warning that "treatment is futile" are also sometimes wrong.

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UK Court of Protection vs. Ontario CCB - NHS Trust v. VT

The recent case of NHS Trust v. VT illustrates a key difference between the UK Court of Protection and the Ontario Consent and Capacity Board when it comes to the resolution of medical futility disputes.



Prognosis for VT



For 10 years, VT had endured the after-effects of a stroke as well as diabetes, hypertension and kidney disease. Then, in May 2013, VT suffered a cardiac arrest. Three specialists concluded that VT had sustained a very severe brain injury and had no prospect of any meaningful recovery.  (Guardian;  Telegraph)



Clinicians' Proposed Plan



An NHS Trust brought an application to the COP that it was not in VT's best interests for him to be given intensive resuscitation or be admitted to intensive care if his condition deteriorated.



Family's Opposition to Proposed Plan



But VT was an elderly devout Muslim.  His family argued that he would regard his suffering as bringing him closer to God.



Court Ruling



Mr. Justice Hayden, at the Court of Protection said the Trust could withhold treatment. To prolong life in VT's case would "effectively be restarting a life which has stopped."



Comparison to Ontario CCB



In light of the Supreme Court of Canada's decision in Rasouli, the only resolution for such a case in Ontario would be an application to the CCB  But if the family could actually establish the patient's Muslim faith and goals (and the UK judge found it would be quite extraordinary if his family were misrepresenting the father's view), it is very unlikely that the CCB would be able to overrule the family's direction to continue ICU treatment.  The Ontario HCCA provides that SDMs must "give or refuse consent in accordance with . . . a wish applicable to the circumstances that the incapable person expressed while capable . . . ."  



Takeaway / Upshot 



In short, religion can trump best interests in Ontario.  Best interests can trump religion in the UK.

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POLST - 3 Lesser Known Strategies for Success

Delaware Academy of Medicine

It was a pleasure to be a part of a well-attended and well-engaged conference on DMOST (Delaware POLST) yesterday.  



David Barile's presentation was particularly polished and engaging.  But for those who work with advance care planning issues, much of the content from most presenters was familiar.  Like hand washing, the lessons are known.  The real challenge lies in effective implementation.  So, I will briefly describe just three lessons that I think have received comparatively little attention.



1.  The New Jersey POLST, in contrast to every other state, has the orders for CPR/DNR in section 'D' instead of at the top of the form.  In light of Fred Mariarchi's research on how DNR orders are widely misinterpreted (which I review here), this seems like a prudent move.  Furthermore, the top of the form records "goals of care," making the form a useful decision aid and not just an order set.



2.  Since patients and residents may be unfamiliar with POLST, it is useful to direct them to videos an other decision aids in advance of a meeting to complete a POLST.  This is already where informed consent is moving for much of the rest of medicine.   



3.  Since POLST is such an effective tool and mechanism for assuring that patient preferences are known and honored, it will soon be negligent to not use POLST.  POLST is now well-established or being implemented in 45 states.  To sit idly by would be like manufacturing a car in 2013 without seat-belts or airbags.  

     

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Outrage that Medicine Cannot Halt Death

"The old acceptance of destiny has gone, and a new sense of outrage that modern advances cannot finally halt the inevitable makes care of the dying and their families demanding and often difficult, but perhaps all the more rewarding."

Dame Cicely Saunders

Founder of modern hospice

Foreword to Oxford Textbook of Palliative Medicine (1993)

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Man Left for Dead and Buried Pulled ALIVE from his Grave in Brazil

Worldwide media (e.g. Daily Mail) are reporting the case of a man left for dead and buried who was pulled ALIVE from his grave in Brazil.  In shocking scenes captured on camera, the man can be seen moving his arms and hands as he is lifted out of the ground by stunned ambulance workers.



I have reported a number of "miracle" cases and cases of prognostic and diagnostic error.  But this is obviously far more dramatic and surprising.

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Tim Bowers' Decision to Stop Life Support

On Sunday, just one day after falling from a deer stand and injuring his spine, Tim Bowers decided to end his life rather than remain paralyzed and on life support forever.



"This is the ideal in many ways of what medicine and medical ethics has been trying to accomplish for end-of-life care, in that, a patient who was facing the end of his life had a chance to speak for himself, and tell his wife, his family, the world, what he wanted," -- Dr. Peter Schwartz, IU Center for Bioethics.



I agree with Dr. Schwartz.  But did Tim Bowers have sufficient decision making capacity at the time he made the decision?  Did he sufficiently appreciate the options and possibilities of life as a paralyzed individual.  We commonly impose mandatory waiting periods for major decisions (sterilization, abortion, death with dignity).  This helps assure not just adequate appreciate of risks and alternatives but also allows deliberation and reflection.



Even John Stuart Mill would support a temporary waiting period.  It is only "soft" or "weak" paternalism, to ensure that the individual's decision truly is voluntary.    



  

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Medical Treatment Produces Outcome Worse than Death

"Mere death is not the bitterest, but rather when one who wants to die cannot obtain even that boon"



"Nay, death is not so hateful as when one

Desiring death is balked of that desire."

• Chrysothemis in Sophocles Electra

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Medical Futility Procedures: What More Do We Need to Know?

Emily Rubin, MD, JD and Andrew Courtwright, MD, PhD from the Massachusetts General Hospital have a new article in the November issue of Chest:  "Medical Futility Procedures: What More Do We Need to Know?"  Here is their abstract:



Unilateral medical futility policies, which allow health-care providers to limit or withdraw life-sustaining treatment over patient or surrogate objections, are increasingly designed around a procedural approach. Medical or ethics committees follow a pre-specified process, the culmination of which is a justified decision about whether ongoing treatment should be withheld or withdrawn. 



These procedures have three stages. First, health-care providers must decide to refer patients for consideration of whether ongoing treatment is futile. Second, the committees involved must decide whether ongoing treatment is actually futile. Third, there is a clinical outcome that often is, but not always, patient death. 



We review the available data on procedure-based futility policies, arguing that there is limited information on their potential harms and how these harms are distributed. We consider the ethical implications of policy-making under informational uncertainty, invoking the precautionary principle—in the absence of clear data, if a policy has significant risk of significant harm, the burden of proof that it is not harmful falls on those recommending the policy—as the guiding moral standard for hospitals and professional organizations considering whether to adopt a procedural approach to medical futility. On the basis of this principle, we argue that any new futility guideline must include a significant commitment to collecting prospective data on its application.

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Choices Doctors Would Make if Their Infant had Hypoplastic Left Heart Syndrome

The Bioethics Center at Children's Mercy is hosting a pediatric bioethics webinar this Friday, November 8th from 12-1 Central Standard Time.  Register for free here.  



Dr. Alex Kon, Chief, Pediatric Critical Care Medicine and Medical Director, PICU at the Naval Medical Center San Diego will be discussing: “Choices Doctors Would Make if Their Infant had Hypoplastic Left Heart Syndrome.”

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20th World Federation of Right to Die Activists

The 20th World Federation of Right to Die Activists is scheduled for September 17-21, 2014 in Chicago.  The schedule is shaping up nicely.  Here is a tentative draft:  



THURSDAY, Sept 18, 2014

• 9 - 10:30 WF Delegates Conference Short Papers


• 11- 12 WF Delegates Conference !! Short Papers


• Lunch


• 1:30 - 3 Innovative Approaches to Legal Change 




• Kathryn Tucker, Legal Director, Compassion and Choices


•  Rob Rivas, Legal Director, Final Exit Network


• Carter Case, Canada




• 3:30 - 5 Legislative Success & Failures




•  New Zealand


• Canada


• Australia


• Europe 




• 7 - 9:30 Films, videos

FRIDAY, Sept 19, 2014

• 9-10:30 Old Age Rational Suicide




• Michael Irwin, MD, President, Society for Old Age Rational Suicide


• Petra de Jong, MD, President, NVVE (Netherlands)


• Jerome Sobel, MD, Exit Suisse Romande (Switzerland) 




• 11-12 Voluntary Euthanasia: Netherlands, Belgium, Luxembourg




• Petra deJong, MD, President, NVVE, Mobile Units in the Netherlands


• Jacqueline Herremans, President, ADMD Belgium 


• Luxembourg




• Lunch


• 1:30 - 3 Assisted Dying, Mental illness and Dementia 




• Boudewijn Chabot, MD, First case before Dutch Supreme Court


• Erica Preisig, MD, President, Spirit Foundation, Switzerland


• Tom Tuxil, MD, Medical Director, Final Exit Network




• 3:30 - 5 Assisted Dying for Children  New Frontiers




• Jacqueline Herremans-Belgium  South Africa


• Petra de Jong, MD, President,NVVE Hong Kong




•  6-9 BANQUET

SATURDAY, Sept 20, 2014

• 9 - 10:30 Successful RTD Organizations! NuTech




• Petra de Jong, President,NVVE 


• Derek Humphry, Author, Final Exit


• Soichiro Iwao, MD, President, JSSD 


• Richard Cote, Author


• Switzerland -Exit Boudewijn Chabot,MD, 




• 11-12  How Doctors Choose to Die 




• Drugs


• Internet


• Helium




• Lunch


• 1:30 - 3 Research




• Chris Docker workshop 


• Boudewijn Chabot, MD




• 3:30 - 5 Looking into the Crystal Ball 




• Audience participation


• Past Presidents

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What Is a Sufficient, Valid Reason to Hasten Death?

Recent reports indicate that individuals (especially in the Netherlands) are actively voluntarily hastening their deaths for all sorts of reasons, including blindness and general frailty.  It is useful to place these requests in context by looking at the wide range of reasons that individuals passively hasten their death.  



This weekend, avid outdoorsman Tim Bowers was badly hurt Saturday in a hunting accident.  The 32-year-old was deer hunting when he fell 16 feet from a tree and suffered a severe spinal injury that paralyzed him from the shoulders down. Doctors said that he would be paralyzed and could be on a ventilator for life.  (Houston Chronicle)



Tim's family had a unique request:  Could he be brought out of sedation to hear his prognosis and decide what he wanted to do?  Doctors said yes.  "We just asked him, 'Do you want this?'  Tim shook his head emphatically no.  Tim chose to take no extra measures to stay alive and died Sunday, hours after his breathing tube was removed.

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Brook v. Royal Bournemouth Hospital - Unilateral DNAR

Doctors at Dorset's Royal Bournemouth Hospital signed a "do not resuscitate" order on patient June Brook without informing either her or her family.  (BBC; Telegraph)



This is the n+1 case of this type to be publicly reported in the UK over past two years.  But it seems perhaps a little more troubling than some of the others:

1. Brook had been admitted with sickness and diarrhea.  But during her stay the order was issued to allow her to die if she needed resuscitating.  


2. The order wrongly states the family were "not available."  


3. The order states CPR would be inappropriate because Brook has dementia.

While Brook was discharged without needing CPR, the hospital has apologized and will investigate to learn from the incident.

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12th World Congress of Bioethics

The 12th World Congress of Bioethics is June 25-28, 2014 in Mexico City.  The deadline for abstracts is December 1.

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Increase in Number of People Dying in the Place of their Choice

Delighted to see this  article title in the Guardian:  "Increase in Number of People Dying in the Place of their Choice."  



A report released, today, from Public Health England, shows that about 24,000 more people died at home or in care homes rather than hospital in England in 2012 than they did four years before, reflecting the wishes of more people in their last year of life.



As the Dartmouth Atlas has repeatedly demonstrated in the United States, there are large variations in the proportion of deaths in hospital. People are least likely to be in hospital at the end of their lives in Cambridge – 37.9% – and most likely to die in hospital in Waltham Forest, north-east London, where the figure is 69.1%.  

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Teaching Physicians to Do LESS for Patients at End of Life

"I have often thought it would be important to instruct physicians how to behave in cases of incurable disease: not so much to tell them what to do; rather what not to do." 

• Letter from Johann Stieglitz to Karl F.H. Marx (15 December 1826).

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Call for Taking Brain Dead off Life Support

"Call for Taking Brain Dead off Life Support" - This provocatively titled article appeared in the Saudi Gazette.  



Fortunately, there is no need for such a "call" in the United States.  However, there is a louder and louder U.S. "call" for taking the permanently unconscious off life support.  Across the United States, many institutional and regional policies now define interventions for the permanently unconscious as "non-beneficial" treatment than may be unilaterally refused after some internal due process. 



The Saudis are concerned with the cost of taking care of over 1000 brain dead patients each year.  And they are concerned with depriving other patients in need of intensive care of beds.  Those concerns are driving U.S. healthcare providers to "call" for taking the permanently unconscious off life support irrespective of those patients' preferences to have life support.

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Nonbeneficial Treatment and Conflict Resolution: Building Consensus

Southern California Kaiser Permanente bioethicists Craig Nelson and Blanca Nazareth published a nice review of three years of experience with their futility policy.  

Consistent with other published studies (e.g. Predergast; Garros), the rate of intractability is just 5% (5 of 92 cases).

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Your Care, Your Choice - Liberty at the End of Life: DMOST

"Your Care, Your Choice - Liberty at the End of Life" is an education forum presented by a broad legal, medical, social service, and faith-based leadership group who has come together to implement a new Delaware Medical Orders for Scope of Treatment (DMOST) plan for Delawareans to use at the end of life.



10:30 -10:50 am

Welcome, Program Overview

• Susan DelPesco, JD (Superior Court Judge (retired), Wilmington, DE)

10:50 am - 11:45 am

Developing a Successful State MOST Program:  Advice from the Field

• David Barile, MD (Executive Director of New Jersey goals of Care, and Medical Director of Acute Care for the Elderly and of Palliative Medicine Services at the University of Princeton Princeton, NJ)

11:45 am- 12:30 pm

Evolution of Advance Directives up to POLST (Physician Orders for Life Sustaining Treatment, and the Need for DMOST

• Charles Sabatino, JD (Director, ABA Commission on Law and Aging, Washington, DC)

12:30 -1:15 pm

LUNCH (provided)



1:15 - 2:00 pm

Ethical Considerations, the Key Elements of an End-of-Life Medical Order, Explaining the need for DMOST in Delaware, including stories from Christiana Care and SNF's.

• John Goodill, MD (Chief of Christiana Care Health System's Pain and Palliative Care Section, Newark, DE)

2:00 -2:10 pm

BREAK



2:15 -3:00 pm

The Progress of POLST Programs Across the Nation, Litigation Arising From Failure to Respect Patients' Rights

• Thaddeus Pope, JD, PhD (Director of the Health Law Institute at Hamline University Minneapolis, MN)

3:00—4:00 pm

DMOST - the Proposed Statute

• Susan DelPesco, JD, (Superior Court Judge (retired), Wilmington, DE)

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Time of Death - Showtime Documentary

What are the final weeks, days and very moments of life really like? A new Showtime documentary, TIME OF DEATH, offers an unflinching, intimate look at remarkable people facing their own mortality. Cameras follow these brave, terminally ill individuals as they live out the end of their lives, supported by family, friends, and dedicated healthcare and hospice workers who gently guide the process.

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Patient in Vegetative State Not Just Aware but Actually Paying Attention

Scientists at the Medical Research Council Cognition and Brain Sciences Unit and the University of Cambridge just published "Dissociable Endogenous and Exogenous Attention in Disorders of Consciousness" in Neuroimage: Clinical.



A patient in a seemingly vegetative state, unable to move or speak, showed signs of attentive awareness. The patient was able to focus on words signaled by the experimenters as auditory targets just as successfully as healthy individuals. 



The lead author explained that the team found both the patient had the ability to pay attention as well as  independent evidence of their ability to follow commands.  "In order to try and assess the true level of brain function and awareness that survives in the vegetative and minimally conscious states, we are progressively building up a fuller picture of the sensory, perceptual and cognitive abilities in patients. This study has added a key piece to that puzzle, and provided a tremendous amount of insight into the ability of these patients to pay attention."

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