New Jersey Death with Dignity Act Gets Hearing

New Jersey Assembly Bill 2270 ( introduced in February) proposes a Death with Dignity Act.  The Assembly Health and Senior Services Committee will hold a hearing on Thursday June 5.

Read More

Jeralean Talley, Oldest Person in USA, Turns 115

Last Friday, Jeralean Talley, believed to be the oldest person in the USA, turned 115 years old.  She was born in 1899.



The secret to her longevity may likely be movement.  Attending a celebration at her church, Talley bypassed a chair elevator at the bottom of the steps.  "I’m not waiting for that thing."  Instead, Talley grabbed a handrail, and ever so slowly, the woman who bowled until she was 104, handed her walker to a friend and began the 10-step climb to the waiting congregation.  (Detroit Free Press)



Peter Lichtenberg, director at Wayne State University’s Institute of Gerontology, suggests that the longest-living Americans have a range of backgrounds, lifestyles and health factors. Some drink and even smoke. Some lived through extreme poverty and pain.  But the one commonality is how much movement people have.  

Read More

VSED TEDx Video "Not Here By Choice"

In this 17-minute TEDx video, Phyllis Shacter talks compellingly about her husband's decision to voluntarily stop eating and drinking (VSED) to avoid living in the late stages of Alzheimer's.  



I have written (here and here) to help dispel myths and perceived legal obstacles to VSED.  But the bigger hindrance is ignorance of the option.  Hopefully, with more stories like Phyllis' (see, for example, here, here, here, here, here, and here), VSED will be better recognized as a peaceful, comfortable means to hasten death.  

Read More

Encyclopedia of Bioethics 4th Edition - Now Available

Macmillan Reference USA has just published the 4th edition of the Encyclopedia of Bioethics.  It is available in 6 volumes or by eBook.  I am pleased to have two entries included in this edition.  



With its initial publication in 1978, the Encyclopedia of Bioethics became the first reference to focus solely on a then burgeoning field, in effect helping to define the discipline. The set remains the standard reference on bioethics for teachers, students, and those in related fields of health care, philosophy, environmentalism, law, and religious studies. 



The fourth edition offers hundreds of revisions or addenda to entries from previous editions as well as over 100 new or rewritten entries on topics such as key cases in bioethics, the human biome, genetically modified foods, emergency preparedness and response, social justice, sustainability, chemical warfare and torture, among many others. Revised articles will explain the events as well as legislation changes of the past decade. The work is also being expanded to include views of nations and cultures other than the United States on such issues as abortion, medical triage, social responsibility, access to health care, stem cell research, etc.

Read More

Disability Rights v. University of Wisconsin

I blogged about this case over four years ago when it was first filed.  Disability Rights Wisconsin sued the University of Wisconsin and several individual physicians over their "plan of noncare" for several patients.  



Basically, DRW's argument is that because these patients were not permanently unconscious Wisconsin law does not allow life-sustaining treatment to be withdrawn (see, e.g., Edna MF; Montalvo).  In other words, the substitute decision makers in this case did not have the authority to authorize withholding or withdrawing of treatment and the clinicians knew that (or should have known that).  



In December 2013, after settling some federal claims with the University, DRW lost on some state law claims against individual clinicians at the trial court level.  The parties are now briefing an appeal to the Wisconsin Court of Appeals.

Read More

Labeled - Film on Supposedly "Lethal" Birth Disorders

This spring, the film "Labeled" was officially released.  "Labeled" exposes the shocking reality of how parents of some children diagnosed with genetic disorders are tragically being told their child’s condition is lethal and incompatible with life.  (For more on this from an academic perspective, see the work of Annie Janvier.)  Once labeled, children may have life sustaining food and medical care withheld or withdrawn, without the consent or knowledge of their parents.



Labeled follows Hannah Allison and her family.  Talking with medical experts, families, historians and theologians, they uncover the historical roots of the modern day eugenics movement and the disturbing practice of passive euthanasia still occurring in hospitals today. 

Read More

Terri's Life & Hope Physician & Attorney Network

Terri's Life & Hope Physician & Attorney Network is recruiting physicians, lawyers, and other professionals. 

Those registering for the Network may be asked to, among other things:

• Review medical records in selected cases to give professional opinion on need for and likely efficacy of life-preserving treatment, nutrition or hydration.


• Consider, when authorized, conducting an independent medical examination in order to give such an opinion.


• Accept transfer of patients "being denied life-preserving treatment, nutrition or hydration.


• Talk to a patient or patient advocate who is faced with a life threatening situation.

Read More

Rights of the Dying Child: Trieste Charter

In September, 2012, a group of professionals working with children affected by incurable illness launched a project, supported and promoted by the Maruzza Lefebvre D’Ovidio Foundation, to formulate a charter of rights for children approaching the end of their lives.



This draft was more recently revised by a larger group of 50 experts representative of a range of professional, institutional, and social figures (doctors, nurses, psychologists, philosophers, ethicists, parents, and journalists) at a consensus meeting held in Trieste, Italy.



The final version was approved and entitled the "Trieste Charter."  The rights of the dying child are

1. To be considered a person until death irrespective of age, location, illness, and care setting


2. To receive effective treatment for pain, and physical and psychological symptoms causing suffering through qualified, comprehensive, and continuous care


3. To be listened to and properly informed about his or her illness with consideration for his or her wishes, age, and ability to understand


4. To participate, on the basis of his or her abilities, values and wishes, in care choices about his or her life, illness, and death 


5. To express and, whenever possible, have his or her feelings, wishes, and expectations taken into account


6. To have his or her cultural, spiritual, and religious beliefs respected and receive spiritual care and support in accordance with his or her wishes and choices


7. To have a social and relational life suitable to his or her age, illness, and expectations


8. To be surrounded by family members and loved ones who are adequately supported and protected from the burden of the child’s illness


9. To be cared for in a setting appropriate for his or her age, needs, and wishes and that allows the proximity of the family


10. To have access to child-specific palliative-care programs that avoid futile or excessively burdensome practices and therapeutic abandonment

Notably, in the brief Lancet article that introduces the charter, the authors specifically observe the problem of medical futility:  "Sometimes, the people closest to them refuse to accept the negative progression of the disease and, consequently, do not recognize terminal illness and death as real and imminent issues to be addressed. As a result, these children are subjected to unrealistic decisions and treatment choices."

Read More

A Restatement of Health Care Law

David Orentlicher has just published "A Restatement of Health Care Law" in the Brooklyn Law Review. 



This is a great proposed project with which I would love to be involved.  A Restatement could clarify and guide legal doctrines like informed consent.  And it could "untangle" complicated doctrines like ERISA preemption.



Orentlicher notes that a Restatement could "provide courts, legislators, practitioners, and scholars with a very helpful understanding of the legal landscape for these [and other] doctrines."  Among other things, Orentlicher writes that "there would be considerable benefit alone from a thorough and authoritative description of the rules for withdrawing life-sustaining treatment."

Read More

Oklahoma Medical Treatment Laws Information Act: Futility Transparency

Last May, I wrote about a new Michigan law that would require hospitals to disclose their medical futility policies in writing, on request. 



As I have written, this law does not require anything more than is already required by the Patient Self Determination Act.  But lots of state law duties duplicate federal duties.  



The rationale for the Michigan Medical Good Faith Provisions Act is that it would increase transparency in the health care system and empower patients and their families to make informed decisions. When health facilities are not upfront about their treatment limitation policies, people with serious conditions might waste valuable time and financial resources searching for help from providers who ultimately can do nothing for them.  If the care a patient seeks is not provided at a particular facility as a rule, the patient should be notified and given the opportunity to look for a more accommodating facility or provider, if desired.  



A few weeks ago, Oklahoma enacted a law similarly aimed at empowering patients and their families, the Medical Treatment Laws Information Act.  



Unlike Michigan, Oklahoma already has a law that requires hospitals to continue treatment requested by a surrogate, the Nondiscrimination in Treatment Act.  The new statute requires the State Board of Medical Licensure and Supervision to prepare a "disclosure statement" designed to inform patients and families of their rights under the Nondiscrimination in Treatment Act and related Oklahoma laws.  The "disclosure statement" will be available on the state website and must be distributed by healthcare facilities.

Read More

Senate Hearing on Advance Care Planning

This morning, the U.S. Senate Special Committee on Aging is holding a roundtable format hearing on "Continuing the Conversation: The Role of Health Care Providers in Advance Care Planning."

Moderator

Jennie Chin Hansen, RN

Chief Executive Officer

American Geriatrics Society



Participants

Paul Malley

President

Aging With Dignity



Daniel O’Brien, PhD

Senior Vice President, Ethics, Discernment And Church Relations

Ascension Health



Randall Krakauer, MD

Vice President, National Medical Director, Medical Strategy

Aetna



Samira K. Beckwith, LCSW

President And Chief Executive Officer

Hope HealthCare Services



William Novelli

Co-Chair And Professor

Coalition to Transform Advanced Care and McDonough School of Business, Georgetown University, respectively



Carmella A. Bocchino, RN

Executive Vice President

Clinical Affairs and Strategic Planning, America’s Health Insurance Plans

Read More

Moments of Life: Made Possible by Hospice

In celebrating the 40th anniversary of hospice care in the United States, the National Hospice and Palliative

Care Organization is excited to introduce a new national campaign, “Moments of Life: Made Possible by Hospice,” that will show all Americans that hospice focuses on living and enables special moments and memories at the end of a life for patients and loved ones.



A father’s final wedding dance with his daughter; a Veteran’s visit to the WWII Memorial; the opportunity to bring an infant daughter home; an afternoon tea party with grandchildren… these are only some of the moments made possible by hospice.  The Moments of Life awareness campaign will feature stories gathered by hospices across the country of patients and families experiencing hospice care first hand. The stories will take the form of videos, photos, audio recordings and text and will offer a vibrant cross-section of different perspectives of hospice.



For many who have not seen hospice in action, it has become a common misconception that hospice patients are merely lying in bed, waiting for their end to come. For families who have experienced hospice, they see the focus is not on dying—it is about living as fully as possible. Hospice not only provides the highest quality care, it affords more moments, memories and opportunities.

Read More

Sam Schmid - "Bounces Back" from the Dead

Two years ago, Sam Schmid's close encounter with death was called a "Christmas miracle." As he lay in a coma after sustaining massive brain injuries in a car crash, doctors were discussing organ donation with his parents and ready to take him off life support.



But Schmid astounded those at his hospital bedside who thought he was brain dead, raising two fingers to signal he still had life left in him. 



Still, at the time, no one knew if the Tucson, Ariz., college student would ever return to his studies -- or even walk or talk again.  Today at 23, he is a force on the basketball court, enrolled in college classes and is hoping to be a veterinary technician. (ABC News)

Read More

Texas Right to Life, Senator Deuell, & the Texas Advance Directive Act

In the past several legislative sessions, Texas State Senator Bob Deuell has tried to improve the procedural due process protections in the Texas Advance Directives Act.  Senator Deuell's bills would have given patients and families new safeguards and lengthened the time to find a new facility when treatment for an ailing patient ends.



But Texas Right to Life has no interest in improving the fairness of the conflict resolution procedures. Instead, it wants to completely eliminate the ability of clinicians to refuse life-sustaining treatment desired by surrogates.  So, apparently, as a deterrent to other legislators, TRL is "punishing" Senator Deuell.



TRL has been running negative ads (see below).  One ad alleges that Deuell “turned his back on life and on disabled patients” and argues that his allegiance is to the medical lobby and not to families and their ailing ones.  Deuell,faces as May 27 primary runoff.  TRL is backing retired businessman Bob Hall of Edgewood against Deuell.   







The Texas Catholic Conference and Catholic Bishops of Texas, who supported Deuell’s bill, say the description of Deuell’s bill is wrong.  (Dallas News)

Read More

Symposium on VSED for Dementia

I have been regularly blogging recent VSED cases (like the ongoing Bentley case in BC).  And I recently updated my 2011 legal overview of VSED in the spring 2014 Journal of Clinical Ethics.



This week, VSED got even more attention.  The May-June issue of the Hastings Center Report devotes several articles to VSED.

• Advance Directives, Dementia, and Withholding Food and Water by Mouth -- Paul T. Menzel and M. Colette Chandler-Cramer


• Toward a Humane Death with Dementia -- Rebecca Dresser


• CASE STUDY: A Fading Decision -- Ross Fewing, Timothy W. Kirk, and Alan Meisel

Read More

National Care of the Dying Audit for Hospitals, England: National Report

The Royal College of Physicians has just released a 115-page report:  National Care of the Dying Audit for Hospitals, England:  National Report.



The report investigated 6,580 deaths in 149 hospitals during May last year. The report concludes that wide-scale improvements are needed to ensure that care and support for the dying is consistently good.  Key findings include:

• Fewer than 50% of NHS patients who were in their last hours or days were told that they were dying by hospital staff.  


• 25% of 858 bereaved family members questioned felt they were not involved in decisions about the care and treatment of their dying relative 


• 37% of bereaved family members thought the emotional support given to them by the healthcare team was only fair or poor.


• Training for hospital staff in the care of the dying was mandatory for doctors in only 19% of Trusts and for nurses in 28%.

Read More

Patients’ Preferences Matter: Stop the Silent Misdiagnosis

I particularly enjoyed the following passages from a fantastic King's Fund report on informed consent::  Patients’ Preferences Matter:  Stop the Silent Misdiagnosis.  The report is not about end-of-life care specifically, but has particular application.



"The solution is as simple in principle as it is counter-intuitive: give patients what they would want were they fully informed. Health care may be the only industry in which giving customers what they really want would save money."



"The politics of health care finance can be tense and exhausting. The source of much of the conflict, however, is the instinct that whatever the solution, there will be winners and losers. A move to stop the silent misdiagnosis, however, is not a win–lose prospect."



"The major constituents all win: it is a win for patients, who get what they would want were they fully informed; it is a win for the general public, as national resources are redirected to investments in education, infrastructure, and more; and it is a win for the health profession. Doctors become more confident that they deliver the right services every time, and experience less in the way of oppressive pressures for ever-improved operational efficiency."

Read More

Unilateral Do-Not-Attempt Resuscitation Orders at the Massachusetts General Hospital

The American Thoracic Society International Conference begins this week in San Diego.  There are a number of sessions and posters related to end-of-life ethics.  This one seemed particularly interesting.

Unilateral Do-Not-Attempt Resuscitation Orders In A Large Academic Hospital

A. Courtwright, MD, PhD

S. Brackett, RN, BS, CCRN

E. Robinson, RN, PhD



RATIONALE:

Unilateral Do-Not-Resuscitate (DNR) orders are a specific type of medical futility decision in which clinicians withhold advanced cardiopulmonary resuscitation (CPR) in the event of cardiopulmonary arrest despite objections of patients or their surrogates.



There is little information on how often and to whom unilateral DNR orders are applied. The ethics committee at Massachusetts General Hospital has had a unilateral DNR policy since 2006. We investigated the incidence, sociodemographic and clinical predictors, and outcomes of patients with unilateral DNR orders.



METHODS:

We reviewed all ethics committee consults that involved disagreement between health care providers and patients/surrogates over intensity of treatment, including DNR status. We used bivariate and multivariate statistics to compare sociodemographic and clinic data from cases in which unilateral DNR was and was not recommended. We recorded whether this recommendation was actually followed and patient disposition following consultation.



RESULTS:

There were 147 cases of conflict over intensity of treatment and DNR status. Of these, the ethics committee recommended unilateral DNR 35% of the time and this recommendation was followed in 83% of cases. 



Neither age (70±3.9 years versus 73±2.5 years, p=0.43) nor female sex (38% versus 50%, p=0.63) was associated with unilateral DNR recommendation. Patients for whom unilateral DNR was recommended were more likely to be non-white (48% versus 26%, p=0.05). Measures of functional status prior to admission, including number of medical comorbidities (3.8±0.28 versus 3.2±0.22, p=0.08) or full or partial dependence in activities of daily living (62% versus 50%, p=0.36), were not associated with unilateral DNR recommendation. Patients for whom unilateral DNR was recommended were more likely to have conditions judged to be endstage rather than potentially reversible (62% versus 41%, p=0.05). Patients for whom unilateral DNR was actually ordered were more likely to die during their hospitalization (79% versus 48%, p=0.01).



CONCLUSION:

Patient age, gender, and functional status prior to admission are not associated with an ethics committee’s decision to recommend a unilateral DNR order. Non-white patients and patients judged to have end stage conditions are more likely to have a unilateral DNR order recommended. Patients who are actually made DNR unilaterally are more likely to die in the hospital.

Read More

Medical Futility Blog Gets One Million Pageviews

I am pleased to report that the Google page-view counter for this blog just clicked over 600,000.  

Plus, this blog's content is re-distributed on WestlawNext, WellSphere, and other publishing platforms.  So, I am estimating that total page-views have now reach one million.  

Read More

Council of Europe Launches Guide on Decision Making Process Regarding Medical Treatment in End-of-Life Situations

This week, the Council of Europe launched a guide on the decision making process relating to medical treatment in end-of-life situations. What rights for end of life patients? In which ethical and legal framework does the decision-making process lie? How and with whom are decisions made concerning medical treatment when it comes to implementing it or stopping it? This new guide aims to provide answers to these and many other questions.



Advances in medicine, particularly developments in medical technology, enable life to be prolonged and increase prospects of survival. However, the chronic or slow progression illnesses give rise to complex situations and are renewing the framework in which decisions are taken on medical treatment in end-of-life situations.



This guide is aimed primarily at the health care professionals concerned, but it is also a potential source of information and a basis for discussion for patients, their families and close friends, all other persons providing support, and associations dealing with end-of-life situations. It proposes benchmarks relating both to the principles that can be applied and the practices in this context and contributes, through the clarification it provides, to the overall discussion on the issue.

Read More

Gary Blick Video Supporting Aid in Dying

Read More

UK Court of Appeal Hears Tracey Case on Unilateral DNAR

In January, I blogged that the UK Court of Appeal agreed to hear the case of Tracey v. Cambridge University Addenbrooke Hospital.  This week, the court (Judges Dyson, Longmore, Ryder) is hearing arguments in the case.



The issue is not whether clinicians can "write" a DNAR order without patient or surrogate consent.  Rather, the issue is whether clinicians must at least "consult" with the patient or surrogate before writing a DNAR order.  (Guardian; BBC)  Specifically, at issue is whether clinicians must:

• Notify the patient/surrogate


• Involve the patient/surrogate and permit them to express their views


• Permit the patient/surrogate to get a second opinion

More generally, the case also asks the Secretary of State for Health to develop a nationwide policy giving information to patients and families about when and how DNR decisions are made. 

Read More

Common Ground for Proponents & Opponents to Aid in Dying?

Syracuse disability rights activist and scholar Bill Peace has a new post despairing whether it will ever be possible to build a bridge between advocates and opponents to aid in dying.  He writes, "I think any sort of common ground will never be found."



Bill correctly identifies me as an defender of patient choice and liberty.  Indeed, I have defended AID, VSED, and other means to hasten death, if that is what the patient really wants.  But I try to be circumspect.  Each week, I read and listen to right-to-life, disability, and other opponents to the availability of these measures.  For example, this weekend, I attended the "Imposed Death" conference and heard some powerful and compelling stories.



I concede that mistakes are made.  Here are just two types.  First, someone may hasten her death, because she "understands" the prognosis to be dim.  But that prognosis may be wrong.  She may actually have years of reasonably healthy life left.  Clinicians can rarely be 100% sure.  



Second, there may be coercion and duress on the part of those self-interested by inheritance or on the part of those motivated by prejudice and bias.  The current safeguards and oversight mechanisms do not wholly eliminate such risks.



I do not disagree with right-to-life and disability opponents on the "existence" of these risks.  (Perhaps we disagree on their prevalence.)  Instead, I think the main point of our disagreement concerns how to respond to these risks.  Opponents think that the appropriate response is to ban AID outright.  That way, it cannot be misused or abused.



But such an approach denies the choice to those who make a free, informed, and voluntary decision for AID.  Our society almost never bans choices for the many just because allowing those options creates risks for the few.  For example, guns are abused.  But we do not ban them for everyone else.



Here are two questions on which I think opponents and proponents might have a fruitful discussion:



1.  Is wholly eliminating AID the least restrictive alternative for mitigating risks of misuse and abuse?  Can we instead design and implement sufficient safeguards against coercion, duress, and manipulation?



2.  Assuming that adequate safeguards are unworkable or impractical, should AID be banned.  In 2013, only 122 Oregonians requested AID and only 71 actually proceeded.  Do the risks to other Oregonians justify denying the AID option to these 122? 

Read More

Pure Physiological Futility (Medical Ineffectiveness)

Read More

New York Medical Futility Bill Highlights Wide Variation in U.S. End-of-Life Decisions Laws

My latest post at the AJOB blog is available here: "New York Medical Futility Bill Highlights Wide Variation in U.S.
End-of-Life Decisions Laws."  

Read More

Canadian Medical Association Forums on End-of-Life Care

This Wednesday, the Canadian Medical Association will host its 4th town-hall form on end-of-life care.  This broad stakeholder involvement is a great idea.    



CMA President Louis Hugo Francescutti prudently observed that "CMA is not going to lead the way in proposing policy, because policy on end-of-life care is something all Canadians have to decide."



This week's two-hour session in Regina will focus on three topics: advance care planning, palliative care and physician-assisted dying. The town hall will be moderated by journalists from Maclean’s magazine, which is a co-partner in the exercise. 

Read More

Ethical Issues in Geriatric Care

The May 2014 issue of the AMA's Virtual Mentor is devoted to Ethical Issues in Geriatric Care.



Clinically, the long-awaited baby boom bulge—the “pig in the python”—presents little that is new to physicians; only that there are more of them and they’re living longer with the chronic conditions that killed earlier generations at younger ages. Psychosocially speaking, however, these former leaders of the “rights” movements of the ‘60s and ‘70s are actively engaged in their care, they challenge their physicians and the system, and some would rather die than decline and burden their children. Virtual Mentor’s May authors explain that medical research, education, clinical care, and health policy must all change significantly to best serve this new breed of patient.



Medicine's New Breed of Patients

Amirala Pasha



What Is the Physician’s Responsibility to a Patient’s Family Caregiver?

David Barnard and Mark J. Yaffe



Should Age Be a Basis for Rationing Health Care?

Haavi Morreim, Ryan M. Antiel, David G. Zacharias, and Daniel E. Hall



Questions about an Advance Directive

Bernard J. Hammes, Thomas D. Harter, Meera Balasubramaniam, and Yesne Alici



The Code Says:  The AMA Code of Medical Ethics’ Opinions on End-of-Life Decision Making



Statutes to Combat Elder Abuse in Nursing Homes

Richard Weinmeyer



The Exclusion of Older People from Participation in Cardiovascular Trials

Jerry H. Gurwitz



Medicare and Means-Based Fees

Richard G. Stefanacci



Who’s Responsible for Granny?

Carol Levine



Baby Boomers’ Expectations of Health and Medicine

Eva Kahana and Boaz Kahana



Geriatric Medicine: History of a Young Specialty

Mary Ann Forciea



Against a Duty To Die

Nancy S. Jecker

Read More

Health Law at AALS 2015

If you are a health law professor attending the January 2015 AALS Annual Meeting, then you are in luck.  There appears to be robust programming in the area of our teaching and scholarship.  



While preliminary, the schedule now includes:



SATURDAY, JANUARY 3

10:30-12:15

Competition in Health Care

(Section on Antitrust & Economic Regulation, co-sponsored by Section on Law, Medicine & Health Care)



1:30-3:15

Patient Dumping: An Exploration of the Unintended Consequences of EMTALA and What the U.S. Civil Rights Commission Might Do about It

Section on Law & Mental Disability



3:30-5:15

Unbefriended Elderly: Making Medical Treatment Decisions for Patients without Surrogates

(Section on Aging & Law, Section on Law, Medicine & Health Care)



5:15-6:30

Health Law Works in Progress for New Law Teachers

(Section on Law, Medicine & Health Care)



5:15-6:30

Incorporating Law & Mental Disability into the Law School's Curriculum

(Section on Law & Mental Disability)



SUNDAY, JANUARY 4

4:00-5:45

Tort Law and a Healthier Society

(Section on Torts & Compensation Systems)



Plus, there will be an offsite reception for the Section on Law, Medicine & Health Care on either Friday or Sunday night.

Read More

New Jersey End-of-Life Planning Survey

This week, the Monmouth University Polling Institute and the New Jersey Health Care Quality Institute released their third “Health Matters Poll,” a periodic survey of Garden State attitudes on health care related issues. 



The current survey, which examines planning for end of life care, found that most New Jerseyans have had some sort of discussion about their wishes for end of life medical treatment, but few have actually made specific plans.  In short, New Jersey looks much like the rest of the country (as demonstrated, for example, in November's Pew Research survey).  

Read More