Wednesday, July 30, 2014

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. 

Monday, July 28, 2014

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


Sunday, July 27, 2014

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.”   

Friday, July 25, 2014

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.


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.