» End of Life Care Where the World Finds Bioethics Tue, 01 Dec 2015 14:54:00 +0000 en-US hourly 1 A Precious Gift: Conversation Ahead of the Crisis Thu, 19 Nov 2015 19:41:00 +0000 Linda Doolin Ward and Sandra Doolin Aust
Our mother lived through the experience of our grandmother dying from complications of Alzheimer’s Disease. When she received her own Alzheimer’s diagnosis, she sat down with us and had the “talk.” She knew the course of this disease and the decisions we would face as it progressed: increasing need for assistance with daily activities, appropriate precautions to keep her safe, treatment options that she wanted to avoid including feeding tubes and ventilators that she knew from experience would not be helpful. She was very clear about what she did and did not want. Over the next eight years, we were guided by her clear and early direction, even as she lost the ability to speak in the last two years of her life. It was heartbreaking to lose her, especially in this cruel way, but she had given us a precious gift—confidence that we were doing what she would want us to do.  

Medicare on Board

We are heartened, finally, that policymakers are recognizing the value of this gift and the need to make it easier for patients, families and clinicians to have “the talk,” also known as “advance care planning.” 

In September 2014, the National Academy of Medicine (formerly the IOM) released its report, Dying in America. As the NAM website states, “no care decisions are more profound than those made near the end of life” and we have a “responsibility to ensure that end-of-life care is compassionate, affordable, sustainable, and of the best quality possible.”  

Starting in January 2016, the Centers for Medicare and Medicaid (CMS) will activate two payment codes for advance care planning services provided to Medicare beneficiaries by “qualified health professionals.” In paying for these services, CMS takes an important step in enabling seniors and other Medicare beneficiaries to make important decisions that give them control over the type of care they receive and when they receive it. 

As 2,200 people in our region turn 65 each month, the National Academy of Medicine report and Medicare’s new reimbursement policy are both important and timely. Diverse as we are, all of us will share the experience of dying. In our society, we try to push this fact of life away, and we would rather talk about almost anything else. Attention from the NAM gives us a reason to talk about it. We are honored in Kansas City that Dr. Christian Sinclair was on the NAM committee and Myra Christopher of the Center for Practical Bioethics was a reviewer.  

The Center Can Help

From our personal experience both in our respective roles at the Center for Practical Bioethics and Shepherd’s Center Central, as well as our role as daughters, we suggest that “having the conversation” ahead of the health crisis may be the most important conversation you and your family will ever have. All of us need to name someone to speak for us when we cannot speak for ourselves. Data show that 85% of us will die without the ability to make our own decisions for any number of reasons. 

The Center for Practical Bioethics has developed several tools available at, as well as a program called Caring Conversations® in the Workplace, to provide a process to help with this difficult “talk.” Anyone can download the Caring Conversations® workbook at no cost and employees from the companies and organizations who currently participate have the chance, with the help of a Center staff member, to understand the difference that initiating this talk can have in families. It requires us to be brave. And it’s worth it.  

It literally can be the difference between not having Thanksgiving together anymore because the family fought over what Mom would have wanted, and “Mom’s death brought us even closer together as a family because she made sure we all knew her wishes, and she would have been proud of how we came together to honor her.” It is never easy, but at the Center for Practical Bioethics, it’s called “the greatest peace of mind possible.”

Linda Doolin Ward is the Executive Vice President and Chief Operating Officer of the Center for Practical Bioethics, Kansas City, Mo. Sandra Doolin Aust is the Director of Coming of Age Kansas City, Shepherd’s Center of KC Central, Kansas City, Mo. Both sisters reside in Kansas City, Mo.
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Can a 5-year-old refuse treatment: The Case of Julianna Snow Wed, 28 Oct 2015 23:39:09 +0000 by Craig Klugman, Ph.D.

Julianna Snow is a 5-year-old who suffers from Charcot-Marie-Tooth disease, a neurodegenerative illness. This is the most common of all inherited neurological disorders (about 1 in 2,500 people have it). The disease usually is noticed in adolescence or early adulthood. For Julianna, the disease affects not only movement but swallowing and breathing. She is subjected to NT suctioning every few hours to remove the mucus that accumulates. Her decline was rapid and severe. Michelle and Steve Snow have written extensive blogs about their experiences and conversations.…

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Truth Telling In Medicine: Problems Old and New Fri, 23 Oct 2015 02:10:21 +0000 0 Physician-Assisted Suicide to Become Legal in California Tue, 06 Oct 2015 18:14:04 +0000 0 California Governor Signs Assisted Suicide Bill Into Law Mon, 05 Oct 2015 23:14:10 +0000 0 U.S. ‘right to try’ laws may not help dying get unapproved drugs Mon, 28 Sep 2015 20:38:45 +0000 0 …So That We Know How to Live Tue, 11 Aug 2015 11:00:35 +0000 by Craig Klugman, Ph.D.

This Spring Quarter I had the honor of creating and teaching a new course at my university: HLTH 341 Death & Dying. Most readers of this blog in bioethics probably work in the medical school environment. When I taught in a medical school we provided lessons and experiences in giving bad news and hospice. We may have even taught briefly on the diagnostic tools to diagnose death. In one session put on by the Palliative Care program (thanks Sandra), students met with survivors and learned about death from the family perspective and how palliative care informed that experience.…

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Persistent Problems in Death and Dying Sat, 01 Aug 2015 16:58:07 +0000 0 The Texas Advanced Directive Law: Unfinished Business Sat, 01 Aug 2015 16:56:44 +0000 0 Medicare’s Proposed Rule Is Just the First Step Tue, 28 Jul 2015 03:07:26 +0000 0 Medicare Considers the Value of Advance Care Planning Thu, 16 Jul 2015 02:07:55 +0000 0 California assisted suicide bill stalls before committee Wed, 08 Jul 2015 21:29:07 +0000 0 What remains unsaid about assisted suicide Mon, 06 Jul 2015 17:31:02 +0000 0 California Mom Christy O’Donnell Fights to Die on Her Own Terms Wed, 01 Jul 2015 20:01:58 +0000 0 Supreme Court Allows Use of Controversial Sedative for Lethal Injection Tue, 30 Jun 2015 19:47:52 +0000 0 California bill gives terminally ill patients Right To Try experimental drugs Tue, 23 Jun 2015 17:48:52 +0000 0 Can An Advance Directive Ever Justify Cessation of Eating in an Alzheimer’s Patient? Wed, 17 Jun 2015 12:00:39 +0000 by Craig Klugman, Ph.D.

Margot Bentley did what end-of-life care advocates say we should all do—she completed an advance directive. She wrote hers in 1991 when she was working as a nurse and stated that she did not resuscitation, surgery, respiratory support, or nutrition and hydration.

Today she is at the center of a legal battle in Canada. At age 83, she has suffered from Alzheimer’s disease for the last 16 years. She is non-responsive. Her family wants to follow her wishes by stopping feeding and taking her home to die comfortably.…

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California Medical Association drops opposition to doctor-assisted suicide Thu, 21 May 2015 19:25:00 +0000 0 Raging Against the Dying of the Light Thu, 14 May 2015 05:42:26 +0000 by Craig Klugman, Ph.D.

When do we die? The legal and medical answer is we are dead when we either (a) have experienced total loss of all brain function or (b) cessation of cardiopulmonary activity. The biological answer is that we are dead when as an organism we have lost our ability for integrated function—that is enough parts have ceased to function that the organism cannot be put back together again. That moment we call “death” is in a real way, quite arbitrary.…

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Human Remains for Compost: Repugnant or Resourceful? Fri, 24 Apr 2015 11:04:54 +0000 0 High morale linked to longer survival among elderly Thu, 23 Apr 2015 21:07:01 +0000 0 Death in Secret: California’s Underground World of Assisted Suicide Wed, 22 Apr 2015 20:55:55 +0000 0 Terri Schiavo: Ten Years Later Wed, 01 Apr 2015 01:21:52 +0000 by Craig Klugman, Ph.D.

Today acknowledges the tenth anniversary since the final death of Terri Schiavo. Her feeding tube was removed on March 18 and her body took its last breath on March 31, 2005.

This case was one of the most divisive in bioethics history. The issues in this case of removing feeding tubes and deciding who was the appropriate decision-maker had been largely settled by previous cases and experiences. What made this case unique was that a private family matter was thrust onto the international stage by political and money interests who saw an opportunity to further their own agendas at the cost of a family’s privacy and dignity.…

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Reimburse doctors for helping patients plan end of life care, experts say Mon, 23 Mar 2015 23:43:57 +0000 0 Couple Married 67 Years Dies Holding Hands Thu, 26 Feb 2015 23:18:13 +0000 0 Florida puts executions on hold as high court debates anesthetic Wed, 18 Feb 2015 19:55:29 +0000 0 Canadian Supreme Court: Legal Assisted Suicide In a Year Mon, 09 Feb 2015 18:12:31 +0000 by Craig Klugman, Ph.D.

A year from now, all Canadians may have the right to assisted suicide. In February 6, the Canadian Supreme Court ruled “that the prohibition on physician-assisted dying is void insofar as it deprives a competent adult of such assistance where (1) the person affected clearly consents to the termination of life; and (2) the person has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” In other words, a competent and capacitated person with a serious and unresolvable condition that creates suffering has a right to have assistance to end his or her life.…

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Still Alice: A Portrait of Familial Alzheimer’s Disease Wed, 28 Jan 2015 11:00:02 +0000 by Craig M. Klugman, Ph.D.

This past weekend I spent a cold, snowy day in the theater watching the movie Still Alice. Julianne Moore plays Alice Howland, a renowned neurolinguistics professor at Columbia University who is diagnosed with familial, early onset Alzheimer’s Disease. The film opens with Howland celebrating her 50th birthday where she has a momentary lapse in thought. We next see her giving a lecture at UCLA where she loses her place in giving a presentation. Then she is jogging through the campus where she has taught for decades and finds that she recognizes nothing.…

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Golden years? Researcher explores longevity research and the companies banking on its success Mon, 26 Jan 2015 19:49:13 +0000 0 Ethical Obligations and Clinical Goals in End-of-Life Care: Deriving a Quality-of-Life Construct Based on the Islamic Concept of Accountability Before God (Taklīf) Thu, 01 Jan 2015 19:07:23 +0000 0 Wisdom Does Come with Age Thu, 13 Nov 2014 03:11:09 +0000 0 Why the right to die movement needed Brittany Maynard Wed, 12 Nov 2014 16:56:29 +0000 by Keisha Ray, Ph.D.

Brittany Maynard was diagnosed with brain cancer. At the age of 29 she decided to end her own life and “die with dignity” under Oregon’s “Death with Dignity Act.” There have been many articles written in support of Maynard’s choice and many articles written condemning her choice to die. The right to die movement has many hurdles that it must overcome to draw in more supporters and hopefully influence public policy. Some of those hurdles include misconceptions about the kinds of people that want to end their lives and why people who have been diagnosed with terminal illness want to have the choice to take their own lives.…

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Brittany Maynard: A Terminal Cancer Patient’s Controversial Choice Thu, 06 Nov 2014 04:11:19 +0000 0 How Long Have I Got Left? Wed, 05 Nov 2014 20:36:46 +0000 0 A conversation with a cancer patient about palliative care Wed, 05 Nov 2014 20:36:08 +0000 0 GOVERNMENT IN THE SUNSHINE: ANNOUNCING THE RELEASE OF PLANNING MY WAY Tue, 04 Nov 2014 21:00:24 +0000 by Ellen Fox, MD

It’s been five years since the media firestorm around “death panels” – a term coined by Sarah Palin to refer to a provision in Obamacare that would have authorized Medicare payments for advance care planning discussions. Though the initial blaze died down quickly, the fire has continued to smolder (as shown in this graph I generated using “Google Trends”). The long-term fallout from death panels has been profound, and has extended far beyond issues of Medicare reimbursement.…

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Rest in Peace Mrs. Maynard Mon, 03 Nov 2014 18:38:25 +0000 by Craig Klugman, Ph.D.

Over this past weekend, Brittany Maynard took her own life. At 29-years-old, Mrs. Maynard took her prescription for assisted suicide to end her life before her terminal brain cancer pushed her into a quality of life that she found unacceptable. She was young, articulate, and facing a very short lifespan where she would lose control of her body and mind, becoming increasingly dependent on others to complete activities of daily living.

Mrs. Maynard had stated her intention to take her life in an internet message that she sent out into the world.…

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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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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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Brain-Dead and Pregnant in Texas Fri, 01 Aug 2014 18:35:10 +0000 0 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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