» End of Life Care Where the World Finds Bioethics Thu, 23 Oct 2014 21:19:35 +0000 en-US hourly 1 Death From Ebola: What do we do with the deceased? Mon, 20 Oct 2014 05:36:38 +0000 by Craig Klugman, Ph.D.

In the United States in the year 1900, 52.6% of all deaths were due to infectious disease. the number one cause of death. When these patients died, a family member, friend, or member of a burial society washed their bodies and cleaned them. Their families held wakes and funerals in their homes, often laying out the body in the parlor. They would all go to the cemetery and the body would be buried in a family grave.…

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Sophie’s Choice: Can Machines Do Any Better? Wed, 24 Sep 2014 21:34:03 +0000 by Craig Klugman, Ph.D.

In the 1979 novel Sophie’s Choice by William Styron, the reader meets a Holocaust survivor who was forced in the camps to choose which of her two children would die immediately. Making the choice led to a life of alcoholism, depression, and self-destructive behavior. One interpretation of this novel, later made into an Academy Award winning film (1982), is that having choose whether a loved one lives or dies is a spirit-wrenching decision.

And yet, everyday, health care providers and bioethicists ask legally appointed health care power of attorneys and other designated surrogates to decide whether an incapacitated patient has surgery, receives a feeding tube, is resuscitated, or is intubated.…

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A simple change? The IOM Report on “Dying in America” Thu, 18 Sep 2014 05:15:42 +0000 by Craig Klugman, Ph.D.

Say there was a simple change that could be made to the health care system that would reduce cost, reduce demand, increase patient’s quality of life and satisfaction, address the whole patient and not just the disease, improve care coordination, and increase patient autonomy. All of this is possible, but it requires addressing the problem that in America we do not die as we want to.

This week the Institute of Medicine released its latest report,  Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.…

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A Distinction for the Debate over Brain-Death Thu, 04 Sep 2014 02:09:27 +0000 0 Brain Death Is a Flash Point in End-of-Life Law, Ethics and Policy Wed, 27 Aug 2014 15:00:08 +0000 by Thaddeus M. Pope, J.D., Ph.D.

The August 2014 issue of the American Journal of Bioethics includes nearly 20 articles on the status of death determined by neurological criteria (DDNC or “brain death”).  Not coincidentally, this summer, several other leading bioethics journals are also covering “brain death.”  (See recent and forthcoming articles in the Cambridge Quarterly of Healthcare Ethics, the Hastings Center Report, and the Journal of Medical Ethics.)  I have myself contributed to a multi-article examination of the topic in the imminently forthcoming Journal of Clinical Ethics 25(3).…

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Suicide and Terminal Diseases: A Personal Choice and Rational Approach Thu, 21 Aug 2014 19:41:28 +0000 by Craig Klugman, Ph.D.

My spouse and I have an ongoing conversation, really more of an argument, about one end-of-life scenario. I have stated on several occasions that being in my middle-40s, if I was struck by a serious disease (usually the disease in the scenario is cancer) with a less than 50 percent chance of survival (remission), and a course of treatment that is prolonged and painful, then I would choose not to receive treatment. Instead, I would do a lot of traveling (if able), visit with friends (if able), and then die comfortably.…

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Brain-Dead and Pregnant in Texas Thu, 14 Aug 2014 18:35:10 +0000 0 Briton with advanced heart failure launches new gene therapy trial Tue, 12 Aug 2014 17:54:16 +0000 0 Lessons from France: Decision-Making At the End-of-Life Tue, 12 Aug 2014 08:27:06 +0000 by Craig Klugman, Ph.D.

In the United States, the notion of autonomy is held in high regard. Since the development of patient’s rights in the early 1970s, the notion that an individual has the capacity of self-governance is a cornerstone of medical ethics and a standard of medical care. But that idea has not always been held. In the early and middle parts of the 20th Century, patients were often not told about terminal diagnoses. The joke about doctors curing through the words, “take two aspirin and call me in the morning” derives from the practice that patients were not only not told about their conditions, but were also given treatments without any discussion of what the drugs would do (or not do).…

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Germany allows seriously ill patients to grow their own cannabis Tue, 22 Jul 2014 15:28:51 +0000 0 de Beauvoir’s A Very Easy Death Wed, 16 Jul 2014 04:50:33 +0000 My dissertation advisor recommended that I read Simone de Beauvoir’s A Very Easy Death when I was writing my dissertation on ambivalence.  Apparently de Beauvoir was ambivalent towards her mother. But when I read that book, I wasn’t struck by quotations on ambivalence, but by these. They speak for themselves and are absolutely moving, haunting, and manage to so accurately capture so much about human experience—especially the experience of witnessing others’ deaths, hospitalizations, and suffering.

When picking out her mother’s funeral clothes:  “Before, I went through all this without seeing it. …

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Critical Care Challenge: Dying with Dignity in the Intensive Care Unit Mon, 23 Jun 2014 17:55:10 +0000 0 MEDICAL FUTILITY, THEN AND NOW Mon, 16 Jun 2014 17:22:16 +0000 by Barron H. Lerner, M.D., Ph.D.

When an article promoting the idea of medical futility appeared in the Annals of Internal Medicine in 1990, my father was thrilled.  He believed the term was an apt description of the end-stage cases he too often saw as an infectious diseases consultant, in which he was expected to prescribe progressively more complicated antibiotic regimens to severely ill patients with no hope of recovery.

The concept of medical futility has achieved mixed success.  Advocates have promoted it as a way to discourage aggressive treatment of medical conditions that are not reversible. …

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End-of-Life Doc Payment Plan Returns to the Fray Tue, 03 Jun 2014 18:01:57 +0000 0 National Healthcare Decisions Day: The Need to Reach New Audiences Thu, 22 May 2014 02:05:57 +0000 0 What we are forgetting in the case of Jahi McMath: Culture and its impact on medical decision-making Tue, 20 May 2014 06:35:09 +0000 by Keisha Ray, Ph.D.

Like many others, I followed the very unfortunate case of Jahi McMath. McMath is a 13 year-old black child who went into cardiac arrest and suffered irreparable brain damage after undergoing a tonsillectomy to relieve sleep apnea. Her story was frequently in the news as a battle between Children’s Hospital Oakland, where her surgery was held and whose recommendation to discontinue all life-saving practices conflicted with her parents’ desires to keep her on life support. This battle of conflicting desires has different components, with the major components being legal and medical.…

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‘Right to Try’ laws spur debate over dying patients’ access to experimental drugs Mon, 19 May 2014 18:46:57 +0000 0 For elderly hospital patients, CPR often has poor outcome: study Fri, 09 May 2014 23:58:29 +0000 0 Lawmakers propose incentives for end-of-life planning Tue, 06 May 2014 19:44:42 +0000 0 New York Medical Futility Bill Highlights Wide Variation in U.S. End-of-Life Decisions Laws Mon, 05 May 2014 15:55:09 +0000 by Thaddeus Mason Pope, JD, PhD

On May 1, 2014, New York State Senator Kemp Hannon introduced S.B. 7156, to amend the 2010 Family Healthcare Decisions Act.  It is a fine bill that will modestly improve New York law.  In this blog post, I will explain both current New York law and the changes that S.B. 7156 would make.  But my main objective in analyzing this bill is to highlight the significant variability in U.S. end-of-life decisions laws concerning medical futility.…

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Lessons for the Future of Primary Care from Robin Cook’s Cell Thu, 01 May 2014 07:28:23 +0000 by Craig Klugman, Ph.D.

I just finished reading the popular fiction novel Cell by Robin Cook. This medical thriller revolves around George Wilson, a radiology resident who finds people dying suddenly after receiving diagnoses of terminal illnesses including his fiancé and next-door-neighbor. The catch is that all of these people were beta testers for a new mobile app called iDoc. A technology company developed this program to be a personal primary care physician. iDoc can answer all of your health questions, monitor your vital signs, and even give you a dose of insulin through an implantable reservoir.…

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Senator Advances Bill To Pay Medicare Beneficiaries to Register Advance Directives Mon, 21 Apr 2014 20:56:52 +0000 by Craig Klugman, Ph.D.

U.S. Senators Tom Coburn (R-OK) along with Senators Christopher Coons (D-DE) and Richard Blumenthal (D-CT) introduced a bill to the U.S. Senate (S. 224) that would “encourage Medicare beneficiaries to voluntarily adopt advance directives guiding the medical care they receive.”  The regulations for this bill are to be created by a broad group of stakeholders.

Specifically, the bill would:

(a) Establish an Advance Directive Certification Program
(b) Accredit vendors of online and written stored advance directives
(c)  Provide an incentive for completing an advance directive.…

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National Health Care Decisions: A Week of Dying in America Thu, 17 Apr 2014 21:26:41 +0000 by Craig Klugman, Ph.D.

This week is host is National Healthcare Decisions Day. The goal of this April 16th event is to “inspire, educate, and empower the public and providers about the importance of advance care planning.” Events are being held nation-wide to encourage people to complete advance directive forms as well as to have conversations with their friends and family about end-of-life health care wishes.

The latest study shows that 26% of people in general have completed advance directives.…

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National event urges Americans to plan for the end Wed, 16 Apr 2014 18:08:11 +0000 0 Is a patient ‘vegetative?’ The crucial answer may be quite wrong. Wed, 16 Apr 2014 18:04:42 +0000 0 Mother of brain-dead Jahi McMath says daughter is ‘still sleeping’ Fri, 28 Mar 2014 18:46:07 +0000 0 Crowdsourcing medical decisions: Ethicists worry Josh Hardy case may set bad precedent Mon, 24 Mar 2014 18:34:20 +0000 0 Death Panels: Can We Handle the Truth? Mon, 17 Mar 2014 22:57:13 +0000 by Thaddeus Mason Pope, JD, PhD

In December, I defended the term “death panel” on this blog.  Specifically, I demonstrated that we already have, and for over 50 years have had, quite a number of tribunals that act as death panels.  For example, at least daily, UNOS denies potentially life-saving organ transplant requests.  While the term “death panel” has a pejorative connotation, the essential concept and function is necessary.  Particularly in situations of strict scarcity, life and death decisions must be made. …

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Company Makes Drug Available To Ailing Boy Following Public Outcry Thu, 13 Mar 2014 19:41:34 +0000 0 How LaCrosse Wisconsin sets a new example when it comes to Advance Directives Mon, 10 Mar 2014 03:03:19 +0000 0 Mom: Hopeful signs seen in teen called brain dead Thu, 20 Feb 2014 22:47:46 +0000 0 Brain-dead pregnant woman to be laid to rest after being removed from life support Mon, 27 Jan 2014 22:45:10 +0000 0 What’s at issue in Texas battle over brain-dead pregnant woman Fri, 24 Jan 2014 19:02:31 +0000 0 Ethicists criticize treatment of brain-dead patients Fri, 10 Jan 2014 19:34:41 +0000 0 It’s the Ventilator’s Fault Fri, 10 Jan 2014 14:55:25 +0000 by Craig Klugman, Ph.D

If you were from a foreign nation looking at the United States news right now, you would think that this was a nation that had declared war on death. Or perhaps we could state it better as a total denial of death. In California, Jahi McMath, a teenage girl who has been medically and legally dead for nearly a month (death certificate was issued December 12) has been moved to an unnamed facility and given surgical procedures to introduce air, water, and food more easily while her body continues to degrade and decay.…

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Brain Death Really Is Death Mon, 06 Jan 2014 22:02:19 +0000 0 Defining Brain Death Mon, 06 Jan 2014 21:59:39 +0000 0 The Year in Bioethics That Was Wed, 01 Jan 2014 21:05:33 +0000 by Craig Klugman, Ph.D.

Happy New Year. The ending of one year and the beginning of another is often a time for reflection, for reviewing the year that has passed and for making plans/predictions for the year to come. 2013 was the first full year of the re-launch of the editor’s blog as well.

Ten bloggers in addition to myself worked for us this year and we are thankful for their contributions: Maurice Bernstein, Arthur Caplan, Jennifer Chevinsky, Nanette Elster, Ellen Fox, Jessica Jerome, David Magnus, Steven Miles, Kayhan Parsi, and Thaddeus Pope.…

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Distinguishing Science from Nonsense Tue, 31 Dec 2013 21:18:46 +0000 by Arthur Caplan, Ph.D.

As Americans enter 2014 there is grave concern among our political leaders that we are lagging behind other nations in terms of our children’s’ scientific literacy.  This past December an international survey confirmed—too many American kids don’t understand science and they continue to fall behind children from other nations, many much poorer than we are in science and math skills.

Students in the United States slipped deeper in the last international science literacy rankings amid fast-growing competition abroad. …

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“Getting On” provides a look at aging and dying Thu, 26 Dec 2013 04:36:52 +0000 by Craig Klugman, Ph.D.

This has been a rich year for depictions of end-of-life and assisted living  in television this year. Back in August, I reported on a PBS series looking at life in assisted living and just last month I wrote about a Showtime documentary series about people at the end of life. The year in television is also ending with another show about the end-of-life, this one produced by HBO where all 6 episodes are available. Getting On is the story of 3 nurses and their demoted medical director, who run a woman’s rehabilitation unit affiliated with a hospital.…

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Death, brain death, and life support Wed, 25 Dec 2013 18:26:04 +0000 by Arthur Caplan Ph.D.

Concepts matter in doing the right thing in medicine.  This could not be more obvious then the utter confusion on display over the concepts of ‘brain death’ and ‘life support technology’ that has resulted in two dead people being kept on artificial life support in California and Texas.

In Oakland, California 13 year old Jahiu McMath has been maintained on machines since an elective tonsillectomy went horribly wrong on December 9.  She has been in the ICU on life-support at the Children’s Hospital since then.…

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Bioethicist: Girl’s tragic case can’t change reality of brain death Thu, 19 Dec 2013 18:56:55 +0000 0 Top 10 North American Death Panels Mon, 16 Dec 2013 17:36:58 +0000 by Thaddeus Pope, JD PhD

The term “death panel” is slippery.  It has been used either to describe or to disparage a rather motley group of initiatives and entities.  Here, I review the top ten North American “death panels.”  While common, applying the term “death panel” in the first two instances is inaccurate and misleading.  Indeed, most popular usage of the term “death panels” remains mere calumny.  But, sometimes, the “death panel” nomenclature is actually befitting.  In the remaining eight cases, the term “death panel” fits reasonably well.…

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When Parents Disagree With the Doctor Tue, 10 Dec 2013 05:21:19 +0000 by Craig Klugman, PhD

“You are considered sane until you disagree with the doctor” is an old adage in clinical ethics circles. We rarely question a patient’s ability to make decisions if the patient’s choice agrees with what the physician wants. I have had several cases where I’ve been asked to look at capacity issues for a patient showing signs of dementia. When I asked who consented for that patient’s procedures to that point, the response was usually, “the patient.” This incongruence seemed to escape notice.…

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When Less is More—Saying No to the Technological Imperative at the End of Life Thu, 05 Dec 2013 22:08:36 +0000 Nanette Elster, JD, MPH

Bioethicist and octogenarian Daniel Callahan wrote an op-ed in the New York Times this week about society’s quest to extend life. He opined, “Adding years to a life doesn’t necessarily make it any fuller.”  I understand Callahan’s view.  I recently assumed the role of healthcare power of attorney for an elderly relative who suffered a traumatic brain injury compounding a previously existing dementia.   I have posed a similar question to Callahan’s observation to every healthcare provider I have encountered during my relative’s most recent hospitalization. …

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Cuthbertson v. Rasouli: Limited Guidance from Supreme Court of Canada Mon, 25 Nov 2013 17:05:19 +0000 by Thaddeus Mason Pope, JD, PhD

On October 18, 2013, the Supreme Court of Canada issued its long-awaited opinion in Cuthbertson v. Rasouli.  Many lawyers and ethicists have already offered significant commentary on the case.  So, after briefly summarizing the litigation and the ruling, I will proceed to draw some important, but less obvious, observations and implications.

Summary of the Case
Cuthbertson v. Rasouli was a typical medical futility dispute.  The patient, Hassan Rasouli, has been a patient in Toronto’s Sunnybrook Health Sciences Center for over three years, dependent on life-sustaining treatment. …

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How Doctors Die: Showing Others the Way Tue, 19 Nov 2013 23:01:28 +0000 0 “Time To Die” Means Time to Talk Wed, 13 Nov 2013 07:35:50 +0000 by Craig M. Klugman, Ph.D.

Media images of dying surround us everyday. In an average hour of dramatic television, bodies fly across the screen as they are shot, knifed, bled, disintegrated, run over, and even decapitated. Heroes in these shows regularly kill the bad guys and in one case, the hero is the bad guy as serial murderer. And that’s before the news comes on.

While we are surrounded by death in our entertainment, these depictions have been blamed for numbing us to mortality and make us less likely to stare death in the face.…

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Paralyzed Hunter Chooses to End Life Support Thu, 07 Nov 2013 18:42:00 +0000 0 Texas woman with cancer pressuring experimental drug maker for “compassionate” access Mon, 23 Sep 2013 19:47:12 +0000 0