Wednesday, July 23, 2014

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.

Tuesday, July 22, 2014

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.

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. 

Saturday, July 19, 2014

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.        

Friday, July 18, 2014

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.

Thursday, July 17, 2014

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.  

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.

Wednesday, July 16, 2014

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.