» End of Life Care Where the World Finds Bioethics Tue, 28 Jun 2016 12:31:45 +0000 en-US hourly 1 End-Of-Life Care Better For Patients With Cancer, Dementia: Study Finds Tue, 28 Jun 2016 12:31:45 +0000 0 Canada Legalizes Physician-Assisted Dying Mon, 20 Jun 2016 12:53:30 +0000 0 Who May Die? California Patients and Doctors Wrestle With Assisted Suicide Fri, 10 Jun 2016 12:38:04 +0000 0 BioethicsTV: Grace and Frankie Kill Their Friend Wed, 08 Jun 2016 05:39:37 +0000 by Craig Klugman, Ph.D.

The Netflix series Grace and Frankie ended its second season with an end-of-life dilemma. The show has been hailed for its portrayal of active, interesting, and vibrant older characters and its embracing of families of all sizes, types, and colors.

Episode 11 introduces Babe, Frankie’s best friend and a free spirit who has spent her life traveling the world and collecting people. We learn that she lived life to its fullest and never shied away from a chance for adventure.…

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Just 5% of Terminally-Ill Cancer Patients Fully Understand Prognosis, Study Finds Tue, 24 May 2016 12:36:54 +0000 0 BioethicsTV: Week of May 20 – Assisted suicide, public health crisis management, and making promises Fri, 20 May 2016 06:55:00 +0000 Chicago Med
In its first season finale (episode 18), Dr. Downey arrives in the emergency department in distress—he is bleeding from his liver as a side effect from his cancer treatment. When he does not awake from the anesthesia, Dr. Rhodes, his protégé, suspects a stroke during surgery. A CT scan shows that Downey did not have a stroke, but rather has a large, inoperable brain tumor—his cancer has metastasized. We are told that his future prognosis is grim and that he is in unrelievable pain.…

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How Much Time Is Left? Doctors, Loved Ones Often Disagree Wed, 18 May 2016 12:04:43 +0000 0 WHEN DO YOU GIVE UP ON TREATING A CHILD WITH CANCER? Fri, 13 May 2016 12:41:49 +0000 0 Euthanasia for Reasons of Mental Health Thu, 12 May 2016 21:35:40 +0000 by Craig Klugman, Ph.D.

An article in the (UK) Daily Mail this week focused on a Dutch woman who chose euthanasia “after doctors decided her post-traumatic stress and other conditions were incurable.” Under Dutch euthanasia laws, a physician can end a patient’s life with a lethal injection for mental suffering. Her life was ended last year.

Euthanasia is when a physician delivers the substance that ends a patient’s life. This is distinct from physician/doctor/provider-assisted suicide (often called aid-in-dying) where a physician makes the means to end life available (often through a prescription) but the patient must ingest the life-ending medication.…

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Taking Sperm From the Dead Thu, 28 Apr 2016 13:53:22 +0000 0 Legal history ignored by opponents of medically assisted death Tue, 26 Apr 2016 18:00:59 +0000 by Stuart Chambers, Ph.D.

In a recent article in the National Review, author and lawyer Wesley Smith takes issue with what he describes as an unprincipled attack against Not Dead Yet (NDY), an American disability rights organization. From a legal and medical standpoint, both NDY and Smith support the withholding and withdrawing of medical treatment but remain steadfast in their opposition to legalizing assisted suicide and euthanasia.

As with NDY, Smith vigorously defends this stance based on the omission/commission moral distinction.…

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Doctors Unsure About How To Talk With Patients About End-Of-Life Care Mon, 18 Apr 2016 13:47:12 +0000 0 Justin Trudeau Seeks to Legalize Assisted Suicide in Canada Fri, 15 Apr 2016 13:58:11 +0000 0 Review Your Directives this National Healthcare Decisions Day Thu, 14 Apr 2016 07:10:46 +0000 by Craig Klugman, Ph.D.

April 16 is National Healthcare Decisions Day (NHDD), a day dedicated to advance care planning—having conversations about end of life care and perhaps completing advance directives. According to the official website, “National Healthcare Decisions Day exists to inspire, educate and empower the public and providers about the importance of advance care planning.”

Nathan Kottkamp, a health law attorney in Richmond, Virginia and member of several hospital ethics committees founded this event as Virginia Advance Directives Day in 2006.…

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A Closer Look at Health Care Providers’ Moral Distress Regarding the Withdrawal of Artificial Nutrition and Hydration Wed, 06 Apr 2016 20:51:01 +0000 0 BIOETHICSTV: Chicago Med-BIID, post mortem egg retrieval, scope of practice and forgiveness Wed, 06 Apr 2016 06:29:15 +0000 by Craig Klugman, Ph.D.

This week on Chicago Med brought 3 new ethical issues as well as the unsatisfying resolution to a story arc.

Story 1 begins with a patient brought into the ED after trying to saw off his arm in the hardware store. The doctors are able to save it but the patient is upset. Dr. Charles, the psychiatrist, realizes the patient suffers from Body Integrity Identity Disorder (BIID) which is characterized by people feeling a part of their body is not theirs.…

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Choosing to die at home does not hasten death for patients with terminal cancer Mon, 28 Mar 2016 15:46:34 +0000 0 Unadorned: My Testament Mon, 29 Feb 2016 18:51:25 +0000 by Steven Miles, MD

Many of you in the Bioethics community know me as a physician-ethicist. Early in my career, in the 1980s, I was prominent in the ethics and practice of end-of-life care. I published extensively on that topic before moving on to other topics. As an internist and geriatrician, I had decades of experience in hospitals, clinics, nursing homes and hospices. As a physician who disproportionately worked with dying persons, I have a greater than normal skepticism of the utility of aggressive technology and heightened insights into the nature of institutionalized life.…

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Pain Relief is an Ethical Issue Fri, 12 Feb 2016 16:52:53 +0000 When patients lack capacity, physicians look to family and friends to step in and provide consent for treatment on behalf of the patient.  These surrogates, whether they were appointed by the patient as their health care agent or become health care surrogates by default under state law based on their relationship to the patient, have the right to receive information related to the care and treatment of the patient and have the corresponding responsibility to make health care decisions for the patient based on either the patient’s previously expressed wishes or her best interests.  What they don’t have, however, is the right to control and direct every minute aspect of the patient’s care in the hospital.  It would take several blog posts to discuss the conflicts that occur between surrogates and health care providers because of this (such as DNR orders, barriers to discharge, and demands for certain medications, to name a few), but perhaps the most concerning example of surrogate over-reach is the issue of inadequate pain management.

The use of pain medication can be difficult for both patients and providers, especially with the rate of opioid abuse in this country.  Patients and their families are often afraid of the possibility of addiction, while physicians are reticent to prescribe narcotics for fear of misuse.  Whether or not a patient is a “drug-seeker” is a common question that arises when physicians are deciding what to prescribe.  However, in the context of terminal illnesses – particularly at the very end of the illness – the shift in focus from curative to palliative care highlights the need for sufficient pain control in the face of nearly intractable pain.  It is in this context that denial of pain medication, or poor pain management, is most clearly an ethical issue.

I have often heard complaints from health care providers about how surrogates have refused to consent to pain medications, or insist that physicians give lower doses than medically appropriate.  When I ask how the provider responded to such requests, all too often the answer is, “I followed their direction.”  We are so used to turning to surrogates for consent for every treatment and procedure, but is it really within the surrogate’s authority to consent to or refuse pain medication?   Assuming there is no advance directive from the patient opposing adequate pain medication, do surrogates have the right to refuse it?  More importantly, is it ethical for physicians to withhold adequate pain medication at the direction of a surrogate despite obvious signs of pain in the patient?

While respect for autonomy is a bedrock principle in our society, and we would certainly honor the informed refusal of pain medication by a patient with capacity, this respect for autonomy does not mean we necessarily honor the directives of the patient’s surrogate to the same extent as we would the patient herself when it comes to pain control.  Without explicit direction from the patient, certain basic assumptions are made about what the patient would want: namely, relief of pain and suffering.  While questions of withdrawal of life-sustaining treatment or palliative surgery may properly be left to the surrogate, the provision of pain medication is assumed as part of basic care for the patient in accordance with the principle of nonmaleficence.  We have an obligation to do no harm to patients, and to the extent possible, to relieve suffering.  While the side effects of opioids should certainly be considered and discussed with the patient’s family, particularly as it may affect the patient’s awareness or respiration, if other palliative approaches are not sufficient to address the patient’s pain, these side effects should not preclude the use of pain medication.  Interventions aimed at pain relief should be given in the overall best interests of the patient, considering the risks and benefits.  Especially at the end of life, providing comfort to the patient should be of utmost importance, even if the surrogate objects.  When pain relief is an ethical issue, it is not an issue for the surrogate alone to decide.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.


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Assisted Suicide Study Questions Its Use for Mentally Ill Wed, 10 Feb 2016 22:57:31 +0000 0 Chicago Med Files DNR Under X-File Wed, 10 Feb 2016 20:07:22 +0000 by Craig Klugman, Ph.D.

This week appears to be advance directive week on television. First, on the rebooted X-Files, Dana Scully finds her mother’s advance directive. Second, on Chicago Med a physician ignores not only a DNR, but a patient’s clearly stated wishes not to be resuscitated. One of these presents a model of a good surrogate decision-maker who respects the patient’s wishes. The other shows an arrogant doctor who blatantly ignores patient autonomy.

The X-Files (Season 10, Episode 4) finds Agent Scully at her mother’s bedside after receiving a call from her brother that their mother is in the hospital.…

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Professional Judgment and Justice: Equal Respect for the Professional Judgment of Critical-Care Physicians Wed, 13 Jan 2016 20:43:57 +0000 by David Magnus, PhD and Norm Rizk, MD

This issue’s target article by Kirby (2016) raises an incredibly important and challenging set of issues: Whether, when, and how should limits be placed on patient access to intensive medical care? What are limits of shared decision making? Is bedside rationing ever appropriate? Kirby’s move away from bedside rationing to a mesolevel approach is novel and interesting. However, as some of the commentaries note, the question of whether there are limits to what will be offered to patients and their families often has to be made at the bedside.…

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The Bell Tolls for Death by Neurologic Criteria: Aden Hailu Fri, 04 Dec 2015 06:42:54 +0000 by Craig Klugman, Ph.D.

A judge in Reno, Nevada this week denied a request by St. Mary’s Regional Hospital to conduct an evidentiary hearing to determine that a patient is dead. Aden Hailu was a 20-year-old student at the University of Nevada, Reno (UNR) when she was hospitalized April 1 with abdominal pain. During exploratory surgery, she had a heart attack that led to low blood pressure and lack of oxygen to the brain. Hailu never awoke. A ventilator is now maintaining her body, an IV introduces fluids and nutrients, and medications are maintaining blood pressure.…

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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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