Decision Aids for Advance Care Planning: An Overview of the State of the Science

Just published in the Annals of Internal Medicine (available for free): "Decision Aids for Advance Care Planning: An Overview of the State of the Science."

This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. 

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The End of End-of-Life Law

Check out this new article by UVA professor Lois Shepherd "The End of End-of-Life Law."



As the title suggests, Shepherd's article argues that questions about medical care at the end of life should be approached like other important questions about medical care—with consideration to patients’ wishes, values, interests, and relationships, and without special laws, special burdens of proof, or unique requirements for documentation. She contends that reducing legal distinctions between end-of-life decisions and other health care decisions can bring efficacious changes to both sorts of decision making processes.



The heart of the article is a "blueprint for reform" through the following eight general principles that should guide the law relating to all health care decisions, including those we now think of as end-of-life decisions.

• Principle 1: Respect and Care for the Patient Require Balancing Rather Than Rigidly Prioritizing Among Patient Instructions, Wishes, Values, and Interests


• Principle 2: All Patients Should Have a Surrogate Decision Maker, and the Same Standards of Decision Making Should Apply to All Surrogate Decision Makers


• Principle 3: Requirements for Advance Documentation by Patients Should Be Minimal


• Principle 4: Binding Pre-Commitments Should Be Allowed Only Sparingly and for Compelling Reasons; They Should Not Be Required or Encouraged


• Principle 5: Rushed Decisions That People Do Not or Should Not Want to “Live Like That” Should Be Avoided


• Principle 6: Communication About Health Care Decisions Should Be Encouraged but Not Scripted by Law


• Principle 7: Appropriate Safeguards to Protect Patients with Diminished Capacity Are Needed


• Principle 8: Relief of Pain and Suffering Should Always Be Permitted and Considered an Important Goal of Care

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New NINR Video Focuses on Preparing for the End of Life

A new video, co-produced by the National Institute of Nursing Research seeks to help people by answering one of life’s most sensitive questions: how can a person best prepare for the end of life? 







Developed to highlight content from NINR’s recently released End of Life module, the video stresses the importance of learning about end of life care options, which focus on comfort and quality of life.



NINR Director Dr. Patricia A. Grady, the featured speaker in the video, explains “A person can best prepare for the end of life by becoming informed. So many of us have questions about death and dying but hesitate to ask them. Our module provides comprehensive information about the many issues that can arise at the end, from the physical, emotional, and mental symptoms associated with dying to more practical concerns, such as where to find end-of-life care.”   

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Even after Tracey Decision, Unilateral & Covert DNR Orders Continue

Last month, the UK Court of Appeal confirmed that while clinicians do not need family consent to write a DNR order, they must at least consult with families before writing a DNR order on an incapacitated patient.  



But a court decision does not change custom and practice overnight.  Garry Whitlam, who has a terminal liver illness, was put into an induced coma at Weston General Hospital  after failing to respond to treatment.  While sifting through the 52-year-old's medical records, his already distraught mother was horrified to see a DNR order among the files. (Bristol Post)  Mr. Whitlam has since regained capacity and is expected to liver two more years.  But he was almost denied that chance.



The incident was investigated by the hospital and the consultant responsible no longer works there.  The hospital "apologized unreservedly" to Mr Whitlam and his family.

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Death & Medical Treatment - New Symposium

The August 2014 issue of the American Journal of Bioethics includes a symposium of over 20 articles on the intersection of medical treatment and death.  



I was unable to contribute to this issue because of competing manuscript deadlines this spring.  But I will be participating in a similar symposium forthcoming in the Journal of Clinical Ethics 25(3) focused specifically on death determined by neurological criteria.  My piece focuses on new statutory, regulatory, and judicial developments.  Another article focuses on actual and model institutional conflict resolution.



Should We Scrap the Dead Donor Rule?

Robertson J.



The Pregnancy Exclusions: Respect for Women Requires Repeal.

Taylor K.



Pregnancy, Brain Death, and Posthumous Motherhood: A Provisional Policy Proposal.

Spike JP.



Death, Hume, Emotions, and the Essential Role of the Physician.

Oermann EK.



Constructing the Legal Concept of Death: The Counterhegemonic Option.

Epstein M.



Beyond Transplantation: Considering Brain Death as a Hard Clinical Endpoint.

Clarke MJ, Remtema MS, Swetz KM.



Defining Death Without Science? A Pragmatic Rebuttal.

Racine E.



Brain Dead Patients Are Still Whole Organisms.

Sadovnikoff N, Wikler D.



Sketching the Alternative to Brain Death: Dying Through Organ Donation.

Jox RJ.



A Legal Fiction with Real Consequences.

Johnson LS.



The Social Construction of Death, Biological Plausibility, and the Brain Death Criterion.

Gervais KG.



Structuring Conversations on the Fact and Fiction of Brain Death.

Rich BA.



Toward a Science of Brain Death.

Peterson A, Norton L, Naci L, Owen AM, Weijer C.



Death as a Legal Fiction.

Marquis D.



Irreversible Shmirreversible.

DiSilvestro R.



Beyond the Essence of Death.

Leier B.



The Paradox of the Dead Donor Rule: Increasing Death on the Waiting List.

Sade RM, Boan A.



A Functionalist View of Brain Death.

LiPuma S, DeMarco JP.



Brain-Dead and Pregnant in Texas.

Mayo TW.



Changing the Conversation About Brain Death.

Truog RD, Miller FG.



Whither Brain Death?

Bernat JL.

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Kim Teske - Compelling Story of VSED

The Globe & Mail has a very extensive story on Kim Teske and her use of VSED to die on her own terms.

Teske had Huntington’s, an incurable genetic disease that combines aspects of Parkinson’s, Alzheimer’s and schizophrenia. She feared that, if she did not act now, she will end her days in an institution with strangers pushing mush into her mouth and hosing her down after she defecates.  



So, Teske stopped eating and drinking. Around noon on day 12 of her fast, Teske died peacefully, with none of the delirium or agitation that some watchers had anticipated.

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Wake Up to Dying Project

The Wake Up to Dying Project is an awareness and action campaign that encourages people to think and to talk about dying.  The organizers do this by gathering and sharing stories about death, dying, and life. They also do this through art and hands-on opportunities to explore these important subjects.



The organizers believe that if we consider this difficult subject more purposefully we will be more prepared, practically and emotionally, to face this shared human experience. We might find ourselves more willing to participate in the dying process of a loved one or a neighbor. We might even be less afraid to think about our own deaths.



One cool aspect of the Project is a traveling exhibit which will offer people a safe and engaging place to listen to personal stories about death, dying, and life.







Exhibit visitors will hear audio stories from over fifty individuals, including: (a) people who are dying, and their family members; (b) experts such as doctors, nurses, chaplains and those who work regularly with the dying; people with particular insights about the process of grieving a lost loved one.  The audio stories will be complemented by abstract video and contemplative hands-on activities.



The exhibit will be housed in a mobile unit that travels from community to community and stays in each location for five to ten days. By parking on ‘Main Street,’ we hope to encourage participation from a large cross section of a community.



When visitors leave the listening trailer they enter a tent where engagement opportunities are offered, including local volunteer work and community art projects. They will also be invited to record and share their own stories. The tent is designed to act as a community space for the duration of the exhibit, and will be offered to local organizations to host related workshops, trainings, panels, and films. 

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Do Oregon and North Dakota Healthcare Surrogates Perform Better?

In most states an individual can appoint a healthcare agent not only without the consent of the agent but also without even discussing the appointment with the agent.  In fact, many healthcare surrogates fulfill the role of substitute decision maker with neither an understanding of the role nor an understanding of the patient's wishes.



But in Oregon and North Dakota healthcare agents must accept the appointment in writing.  (Ore. Rev. Stat. 127.525; N.D. Code 23-06.5-06)  Ideally this requirement would apprise the agent of their duties.  And it would prompt a discussion between the principal and agent.  



Robust evidence shows that surrogates perform rather poorly in terms of making the same treatment decisions that patients would make for themselves.  I wonder whether Oregon and North Dakota surrogates perform better.        

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Pope Cited by NRLC before Senate Judiciary Committee

Many of my (pro-liberty) positions on end-of-life medical treatment issues do not endear me to the National Right to Life Committee.  



But I do aim to produce careful and circumspect scholarship.  Consequently, I was pleased to see the president of NRLC cite me in her testimony before the U.S. Senate Judiciary Committee this week.

    

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Only a Third Who Express a Preference to Die at Home, Actually Die at Home

There is a well-known discrepancy between people's preferences to die at home and their likelihood to actually die at home.  This has already been measured several times.  Now, there is additional confirmation.



Last week, the UK Office of National Statistics released a statistical bulletin: National Survey of Bereaved People (VOICES), 2013.  The reports finds that only one third of people (35%) who express a preference to die at home, actually die at home.  And quality of care was rated significantly lower for people who died in a hospital, compared to people dying at home, in a hospice or care home.  

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Rationing Is Not a Four-Letter Word

Philip M. Rosoff is a practicing physician and Professor of Pediatrics and Medicine at Duke University Medical Center, where he is also a member scholar of the Trent Center for Bioethics, Humanities, and History of Medicine, and Director of Clinical Ethics at Duke University Hospital.

He has just published Rationing Is Not a Four-Letter Word with MIT Press.  I like this book's thesis and explored it (a little) in some posts like "Top 10 North American Death Panels."

Here is the abstract:

Most people would agree that the healthcare system in the United States is a mess. Healthcare accounts for a larger percentage of gross domestic product in the United States than in any other industrialized nation, but health outcomes do not reflect this enormous investment. In this book, Philip Rosoff offers a provocative proposal for providing quality healthcare to all Americans and controlling the out-of-control costs that threaten the economy. He argues that rationing—often associated in the public’s mind with such negatives as unplugging ventilators, death panels, and socialized medicine—is not a dirty word. A comprehensive, centralized, and fair system of rationing is the best way to distribute the benefits of modern medicine equitably while achieving significant cost savings.

Rosoff points out that certain forms of rationing already exist when resources are scarce and demand high: the organ transplant system, for example, and the distribution of drugs during a shortage. He argues that if we incorporate certain key features from these systems, healthcare rationing would be fair—and acceptable politically. Rosoff considers such topics as fairness, decisions about which benefits should be subject to rationing, and whether to compensate those who are denied scarce resources. Finally, he offers a detailed discussion of what an effective and equitable healthcare rationing system would look like.

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Defending Advance VSED - Hasten Death by Dehydration

VSED has been getting a lot of attention lately.  NPR radio host Diane Rehm discussed her husband's use of VSED to hasten his death.  Sir Chris Woodhead discussed VSED in the ongoing assisted dying debate that will reach the House of Lords on Friday.  And the Tampa Bay Times just published a 1000 word article.  

But I want to respond to a rather lengthy attack on me specifically.  Last Thursday, Lydia McGrew published this 5-page attack on advance VSED.   

First, let me clarify that I agree with McGrew: "The acceptance of good food and water should never be regarded as requiring explicit and mature consent."  Consent to food and water, like consent to emergency treatment, can and should be presumed.   

Second, when the individual makes an informed advance refusal of food and water (e.g. to avoid living in the advanced stages of dementia), then the presumed consent is rebutted.  People have a negative right to refuse interventions with their body.  Similarly, while consent to emergency treatment (like a blood transfusion) is presumed, that presumption does not operate when the individual has previously objected.   

Third, the refusal stands until it is revoked.  

Fourth, the refusal cannot be revoked unless the individual has the decision making capacity to revoke it.  

Fifth, an individual in advanced dementia does not have the capacity to decide about eating and drinking, because she cannot appreciate the consequences of that decision.

Therefore, the refusal stands.    

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Call for Papers - AALS Section on Law, Medicine & Health Care Works-in-Progress for New Teachers

Call for
Papers

AALS Section
on Law, Medicine & Health Care

Works-in-Progress
for New Law School Teachers

AALS Annual
Meeting, Washington, DC

Saturday,
January 3, 2015

  

The
AALS Section on Law, Medicine and Health Care is pleased to announce a Call for
Papers for a special Works-in-Progress for New Law School Teachers Program.  The Section will run the Program from 5:15 to
6:30 p.m. on Saturday, January 3, at the AALS 2015 Annual Meeting in Washington,
DC.

This
program will bring together junior and senior health law scholars for a lively
discussion of the junior scholar's’ works-in-progress.  Junior health law scholars will submit papers
that they expect to submit in the spring 2015 law review submission cycle.  After they briefly present their papers in a
concurrent roundtable setting, senior scholars will provide oral comments and
critiques.  This new program presents an
opportunity for the audience to hear cutting edge health law scholarship by
recent members of the academy.

We
will limit our selection to two or three papers.

Form & Length of Submission

Eligible faculty members are
invited to submit either manuscripts or abstracts dealing with any aspect of health
law or policy.  Abstracts must be
comprehensive enough to allow the committee to meaningfully evaluate the aims
and likely content of the papers proposed. 
Papers may be accepted for publication but must be at a
stage where input still would be useful.  Papers must not be published prior to the
Annual Meeting.

Deadline & Submission Method

To
be considered, manuscripts or abstracts and a CV must be submitted
electronically to both: 

Chair,
Section on Law, Medicine, and Health Care

Ani B. Satz, Emory University School
of Law, asatz@law.emory.edu

Chair-elect,
Section on Law, Medicine, and Health Care

Thaddeus Pope, Hamline University
School of Law, tpope01@hamline.edu

The
deadline for submission is September 1, 2014.

Selection
& Notification

Papers
will be selected after careful review and discussion by the Executive Board of
the AALS Section on Law, Medicine, and Health Care.

The
authors of the selected papers will be notified by September 22, 2014.

If
a selected author has submitted only an abstract for review, the author must
submit the corresponding manuscript by December 15, 2014.

The
Call for Paper participants will be responsible for paying their annual meeting
registration fee and travel expenses.

Eligibility

Full-time
untenured faculty members of AALS member law schools are eligible to submit
papers.  The following are ineligible to
submit: foreign, visiting (without a full-time position at an AALS member law
school) and adjunct faculty members, graduate students who are not also
enrolled in a qualifying J.D. program, fellows, non-law school faculty, and
faculty at fee-paid non-member schools.  Papers
co-authored with a person ineligible to submit on their own may be submitted by
the eligible co-author.

Please
forward this Call for Papers to any eligible faculty who might be interested.

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Funerals - Posing the Dead as Living

I like the idea of remembering people as they were.  But this funeral posing also seems to feed into strong death-denying currents in our society.

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Kentucky Judge to Decide on Hospital Treatment for Dead 2-Month Old Isaac Lopez

On Monday, July 14, Judge McKay Chauvin (Jefferson County Circuit Court, Kentucky) will determine whether Norton Healthcare and Kosair Children's Hospital must continue organ-sustaining interventions for two-month-old Isaac Lopez.  His father is accused of criminal abuse that resulted in Isaac's death. (WDRB)

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20th World Federation Conference of Right to Die Societies

Check out the schedule of events for the 20th World Federation Conference of Right to Die Societies in Chicago in September.

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International Conference on End of Life: Law, Ethics, Policy, and Practice

Check out this amazing program, next month, for the International Conference on End of Life: Law, Ethics, Policy, and Practice.

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Nominate the Medical Futility Blog

If you read this blog, I could use your help.  The American Bar Association is starting to consider which law blogs will make its 8th Annual Blawg 100.  They are soliciting nominations of blogs that you read regularly and think lawyers should know about. 



Submit nominations and read more details about submitting a Blawg Amici, or friend-of-the-blawg brief, here.  Friend-of-the-blawg briefs are due no later than 5 p.m. ET on Friday, Aug. 8, 2014. 

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Moral Distress Education Project

Medical futility disputes have been repeatedly measured as one of the biggest causes of moral distress, especially among nurses.



The University of Kentucky has launched a completely free continuing education version of The Moral Distress Education Project. The program functions as a self-guided documentary that provides up to 2.0 hours credits. 



Unidentified or unresolved moral distress leads to retention problems; horizontal violence; and patient-care gaps. By the end of this program learners will understand the root causes of moral distress and how to prevent it by developing better communication strategies and systems-based approaches to reduce moral distress and moral residue, which improves patient care overall and faculty/staff competencies. By completing all three modules, you'll become aware of what moral distress is, and how it occurs. You’ll also be able to properly define moral distress and share definitions with colleagues/coworkers.

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Understanding Cultural Diversity at End-of-Life - New eBook

Passare, an end-of-life planning company, has released its fifteenth eBook titled "Understanding Cultural Diversity at End-of-Life."  



In this book, Passare shares guidance to help you explore and understand how different cultures observe and honor end-of-life.  

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Palliative Care - An Illustrated Story

Check out this new 5 page illustrated story about Palliative Care by Isabella Bannerman.

Here is just the first of the 5 pages.  

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Louisville Judge Orders Kosair Children's Hospital to Continue Ventilating Brain Dead Child

Juan Alejandro Rosales Lopez is behind bars, accused of criminal abuse.  Police contend that Lopez caused his 2-month-old son, Isaac, severe head injuries.  Indeed, the injuries were apparently so severe that Isaac has already been diagnosed as dead.  (WLKY; WHAS; WDRB)



Given the diagnosis of death, clinicians at Kosair Children's Hospital understandably want to remove organ-sustaining measures.  But  Jefferson County Circuit Court Judge McKay issued a restraining order against that.  The father wants time to obtain additional medical opinions.  The next hearing is July 14.



This case is obviously different from the Jahi McMath case.  The father's opposition to the hospital's plan has nothing to do with religion or understanding of death by neurological criteria.  Rather, he seems concerned about pending criminal charges being upgraded to murder.

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POLST Introduces No New Risks

This week, the LA Times published an op-ed opposing POLST.  The writer, Ben Mattlin, concedes that "the attention being given to end-of-life choices is a good sign for those of us who are concerned about patients' rights."  He also concedes that "too many people die in hospitals rather than at home where they'd prefer to be."



But Mattlin also argues that "there's no provision to ensure how well informed you are at the time to make such a decision. . . .  POLST merely hastens uninformed decision-making based on fear."



Mattlin is correct that a patient (or surrogate on behalf of an incapacitated patient) might complete a POLST without fully understanding or appreciating the prognosis or alternatives.  Clinicians might even pressure the patient/surrogate to complete the POLST in a certain way.



But those concerns hardly make for a case against POLST.  

• First, it is an optional an voluntary tool.  If you do not want to complete it, then do not complete it.  


• Second, you can complete a POLST in any manner that you want.  If you want to opt for all life-sustaining measures, then do so.  


• Third, the risks of under-informed decisions are not unique to POLST.  


• Fourth, POLST is for incapacitated patients.  if the patient still has capacity, then she can make her own treatment decisions.

As Mattlin observes, POLST has been proven to have significant benefits in terms of assuring that patients get o more and no less than the treatment they want.  Mattlin and other opponents have not provided persuasive evidence demonstrating that these benefits are outweighed by risks.

  

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Global Institute for Psychosocial, Palliative and End-of-Life Care (GIPPEC)

This week, the University of Toronto and the University Health Network (UHN) launched a new institute dedicated to end-of-life issues and the treatment of patients with life-threatening terminal diseases: the Global Institute for Psychosocial, Palliative and End-of-Life Care (GIPPEC).  



GIPPEC will have its formal inauguration in October 2014, and will be functioning within the next year. It will include a core staff of about six people, and will have numerous Canadian and international researchers contributing part-time.  It will be an interdepartmental and interdivisional research centre devoted to promoting and devising solutions to the medical, psychological, social, legal, ethical, cultural, and religious problems concerned with the treatment of patients with advanced and terminal diseases. The main goals of the institute include research, education, and knowledge mobilization.



Dr. Gary Rodin, Head of Psychosocial Oncology and Palliative Care at Princess Margaret Cancer Centre, UHN, and psychiatry professor at U of T, will serve as director of the institute.  Rodin stated: “Many of the important questions regarding palliative and end-of-life care lie at the interface of medicine and society, and must be addressed from medical, psychological, ethical, legal, economic, cultural, and other dimensions."

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Ten Common Questions (and Their Answers) on Medical Futility [Video]

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Lawyers & Clinicians: Ethical Obligations to Older Adult Clients & Patients

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Unbefriended Elderly: Making Medical Treatment Decisions for Patients without Surrogates

Call for Papers

AALS Joint
Program

Section on Aging
and the Law  ●  Section on Law, Medicine, and Health Care

2015 AALS Annual
Meeting in Washington, D.C.

January 3, 2015 from
3:30 to 5:15 p.m.

Unbefriended
Elderly: 

Making Medical
Treatment Decisions for Patients without Surrogates

The
AALS Section on Aging and the Law and the AALS Section on Law, Medicine, and
Health Care are sponsoring a joint program at the January 2015 Annual
Meeting.  The program will consider many
of the issues faced by elders, doctors, and the health care and social services
systems when making medical treatment decisions for those incapacitated
patients and residents who have no reasonably available legally authorized
decision maker.

There
are three confirmed panelists for this program:

(1)  
Ellen
Fox, MD, former Chief Officer for Ethics in Health Care, U.S. Department of

Veterans Affairs

(2) Professor Lawrence A. Frolik,
University of Pittsburgh School of Law

(3) Erica Wood, JD, Assistant Director, ABA
Commission on Law and Aging

Two
additional panelists will be selected through this call for papers.  Either paper proposals or completed papers
are acceptable for submission.  Selected
panelists may receive an offer for publication from the Journal of International Aging, Law & Policy, a joint
publication of Stetson University College of Law and AARP.  The Journal
is interested in papers that have an international or comparative
component.  Acceptance of a publication offer
is not a condition for serving as a panelist. 
There is no formal requirement as to length of the proposal or final
paper.  Preference will be given to
papers that offer novel scholarly insights on the panel topic.  A paper may have already been accepted for
publication as long as it will not be published prior to the Annual Meeting.

A
successful proposal may focus on the broader legal, medical, or social aspects
of making medical treatment decisions for patients without surrogates.  Also welcome are proposals that focus on ways
to prevent patients from becoming unbefriended in the first place.  This could include analysis of: (a) broader default surrogate laws, (b) better advance
care planning, or        (c) more effective public guardianship procedures.  Narrative pieces concerning the
administrative and regulatory issues presented will also be considered. 

Paper
proposals will be reviewed by a committee of law professors from both AALS
sections. 

Please
submit your paper or proposal by Friday, August 31, 2014 at 5:00 p.m.  Please send it BOTH to Mark Bauer
(Chair, AALS Section on Aging and the Law), Stetson University College of Law, mbauer@law.stetson.edu;
and to Thaddeus Pope (Chair-Elect, Section
on Law, Medicine, and Health Care), Hamline University School of Law, tpope01@hamline.edu.

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Sad, Sad State of Medical Informed Consent

This photograph "After a Flash Flood, Rancho Mirage" could be a great metaphor for the state of informed consent. 



 We have lofty, fancy principles that are well-articulated in ethics and in law.  These principles are like the calm and settled state of the car parked by the suburban house.  But very close by, is how informed consent really works. This is like the car that has overturned and fallen into the sinkhole.  The contrast is sharp.    

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