Hot Topics: End of Life Care

Blog Posts (71)

January 13, 2016

Professional Judgment and Justice: Equal Respect for the Professional Judgment of Critical-Care Physicians

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?…

December 4, 2015

The Bell Tolls for Death by Neurologic Criteria: Aden Hailu

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.…

November 19, 2015

A Precious Gift: Conversation Ahead of the Crisis

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.
October 28, 2015

Can a 5-year-old refuse treatment: The Case of Julianna Snow

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).…

October 22, 2015

Truth Telling In Medicine: Problems Old and New

<p style="font-size: 11.2px; line-height: 19.04px;">The issue of truth telling in medicine was a lively concern in the early days of modern medical ethics during the 1970’s. A new moral awareness had emerge that provided a clear moral rejection of the paternalistic approach taken in the physician-patient relationship that prioritized the traditional values of beneficence and non-maleficence over truth telling. Of course the key development that fueled this new moral perspective as well as the growing passion for medical ethics was the newfound sense that arose beginning in the 1960’s that patients with capacity have a fundamental right both to refuse unwanted treatment and give voluntary informed consent to treatments they were considering. It became obvious to students of medical ethics that if patients are to be able to exercise their right to give voluntary informed consent they must receive a full and accurate disclosure of the relevant information necessary for them to make a decision.</p> <p style="font-size: 11.2px; line-height: 19.04px;">Up to the early 1960’s, patients coming into the health care system very well may not have had an opportunity to give voluntary informed consent. Giving patients this opportunity just wasn’t part of the medical culture. In the early 1960’s it was common for oncologists to not disclose a diagnosis of cancer; by the late 1970’s there was almost universal agreement that full disclosure was the expectation. The full moral force of the principle of respect for patient autonomy happened relatively quickly, especially after the Belmont Report of 1978, which articulated the basic principles of medical ethics (though non-maleficence was subsumed under beneficence). There is no question that the physician-patient relationship has been evolving ever since with new levels of expectations and involvement of patients and their surrogates. There is now universal agreement that physicians are expected to be truthful to patients and accurately disclose their medical condition, including diagnosis and prognosis. Without this first basic step of truth telling in disclosing the medical facts to the patient about their condition, patients cannot exercise their right to express their preferences and wishes about medical treatment and care goals, and specially give voluntary informed consent to medical interventions to treat their condition.</p> <p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;">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 <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
August 11, 2015

…So That We Know How to Live

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.…

July 27, 2015

Medicare’s Proposed Rule Is Just the First Step

<p style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">As Jane Jankowski, DPS, LMSW discussed in her <a href="/BioethicsBlog/post.cfm/medicare-considers-the-value-of-advance-care-planning">last AMBI blog</a> posted on June 16, 2015, the proposed rule to reimburse providers for conversations with patients about advance care planning takes a positive step toward educating patients on end-of-life medical considerations by incentivizing doctors to take the time to address these issues in the clinical setting.  Assuming that such reimbursements depend only on raising the topic of advance care planning with patients and not on the content of a patient’s choices (such as whether or not a patient chooses to forego treatment), encouraging health care providers to discuss health care decision making in advance with patients can go a long way to support patient autonomy and provide helpful guidance to surrogate decision-makers when a patient lacks capacity.  Doctors often cite lack of time as a reason why they do not address advance directives in the clinical setting, but this rule would compensate doctors for their time, allowing them more flexibility in allocating time to address these issues.  However, the proposed rule does nothing to ensure that the providers having these conversations are equipped with the proper tools and training to do so.</span></p> <p style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Advance directives, although they address the provision of medical treatments, are legal documents that can be complex and far-reaching, and therefore are not necessarily self-explanatory to patients or providers.  Many states offer a statutory form advance directive as an example, but all too often these forms may be merely printed by a provider and given to patients to sign without sufficient explanation.  These forms vary in their scope, but some sample living wills, such as forms from </span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href=";art=30#30">West Virginia</a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"> and </span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href="">South Carolina</a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">, are little more than a declaration that no life-sustaining treatments should be provided.  Other states, such as</span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href="">Michigan </a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">and </span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href="">Massachusetts</a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">, have no law giving legal recognition to living wills at all.  It is possible that patients may be given forms such as these and not understand that they have the option to declare that they wish to receive particular life-sustaining treatments if they are terminally ill.  It is also possible that patients who do not want to limit treatment will decline to sign any advance directive at all, believing that such documents serve only to support a decision to forego treatment at the end of life, and not a decision to receive some or all interventions.  In such situations, merely starting the conversation may not be enough to help patients effectively articulate their wishes, whatever those wishes may be.</span></p> <p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; line-height: 19.0400009155273px; font-size: 12px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; line-height: 19.0400009155273px; font-size: 12px;">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 <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
July 15, 2015

Medicare Considers the Value of Advance Care Planning

<p><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Last week the Centers for Medicaid and Medicare <a href="">announced a proposal</a> that would provide Medicare reimbursement for providers to spend time with patients discussing advance care planning. </span><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Though some have argued that this process will carry an inherent bias toward non-treatment, the purpose of such conversations is to seek direction from patients about preferences, values, and expectations should they lose the ability to <a href="">express these things for themselves</a>.</span><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"> While many persons who articulate their treatment preferences indicate the desire to forego aggressive intervention, this is hardly unanimous. There are plenty of folks who want all possible treatment offered to sustain life. The point of having discussions with healthcare providers is to determine what any given individual prefers.</span></p> <p class="MsoNormal" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Acute care providers have long been left with challenging dilemmas when patients are unable to communicate their healthcare goals, and the default is to treat and often treat aggressively. When a patient arrives to an acute care setting with documentation of preferences for treatment, interventions and goals can be set based on the individual’s prior wishes – whether this is to sustain life using any possible technology, or to allow a natural, uninterrupted dying process. The default of treating when there is any doubt will not change, but the opportunities for patients to discuss and document their own preferences will be enhanced with this legislative support. Providing muscle in the form of funding for these important conversations will only encourage more of a good thing. </span></p> <p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="line-height: 19.0400009155273px; color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px;">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 <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
June 17, 2015

Can An Advance Directive Ever Justify Cessation of Eating in an Alzheimer’s Patient?

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.…

May 14, 2015

Raging Against the Dying of the Light

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.…

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Published Articles (7)

American Journal of Bioethics: Volume 15 Issue 8 - Aug 2015

Persistent Problems in Death and Dying David Magnus

American Journal of Bioethics: Volume 15 Issue 8 - Aug 2015

The Texas Advanced Directive Law: Unfinished Business Michael Kapottos & Stuart Youngner

American Journal of Bioethics: Volume 15 Issue 1 - Jan 2015

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) Aasim Padela & Afshan Mohiuddin

American Journal of Bioethics: Volume 14 Issue 8 - Aug 2014

Brain-Dead and Pregnant in Texas Thomas Wm. Mayo

American Journal of Bioethics: Volume 13 Issue 3 - Mar 2013

Withdrawal of Nonfutile Life Support After Attempted Suicide Samuel M. Brown, C. Gregory Elliott & Robert Paine

American Journal of Bioethics: Volume 13 Issue 3 - Mar 2013

Suicide and the Sufficiency of Surrogate Decision Makers Hywote Taye & David Magnus

AJOB Neuroscience: Volume 4 Issue 1 - Feb 2013

Communicating with the Minimally Conscious: Ethical Implications in End-of-Life Care Kathrine Bendtsen

News (375)

October 6, 2015 2:14 pm

Physician-Assisted Suicide to Become Legal in California

Governor Jerry Brown signed the “End of Life Option Act” on Monday, granting terminally ill patients in California the right to end their lives with the help of a physician.

October 5, 2015 7:14 pm

California Governor Signs Assisted Suicide Bill Into Law

California on Monday joined the short list of states allowing doctors to prescribe drugs for terminally ill patients to end their lives as Gov. Jerry Brown signed the measure into law, ending months of silence on one of the most emotional issues for the state this year.

September 28, 2015 4:38 pm

U.S. 'right to try' laws may not help dying get unapproved drugs

So-called “right to try” laws, intended to expand dying patients’ access to experimental treatments, may not work as expected – and might strip patients of federal safety protections, some experts say.

July 8, 2015 5:29 pm

California assisted suicide bill stalls before committee

A contentious physician-assisted suicide bill that would allow some terminally ill patients in California to legally obtain medication to end their lives has stalled, state lawmakers said on Tuesday, amid staunch opposition from religious leaders.

July 6, 2015 1:31 pm

What remains unsaid about assisted suicide

Sick patients sometimes ask for help in hastening their deaths, and some doctors will hint, vaguely, how to do it.

July 1, 2015 4:01 pm

California Mom Christy O’Donnell Fights to Die on Her Own Terms

A terminally ill single mom who has been given months to live is fighting the state of California for the right to die. Now, a judge has ordered an expedited review of her suit, which will be heard later this month.

June 30, 2015 3:47 pm

Supreme Court Allows Use of Controversial Sedative for Lethal Injection

On Monday, the Supreme Court ruled 5-4 in the case of Glossip v. Gross, deciding that it is indeed constitutional to use the controversial execution drug midazolam for death penalty sentences fulfilled by lethal injection — the same drug that was used as a sedative in botched executions over the last two years.

June 23, 2015 1:48 pm

California bill gives terminally ill patients Right To Try experimental drugs

Not long after he was diagnosed with ALS, Jim Barber clung to a small dose of hope: The East Bay resident became eligible to enter a 5-year-long clinical trial for a drug that sought to slow the progression of the incurable neurodegenerative, life-sapping disease.

May 21, 2015 3:25 pm

California Medical Association drops opposition to doctor-assisted suicide

The California Medical Association on Wednesday dropped its three-decade opposition to physician-assisted suicide, possibly paving the way for already-introduced legislation that would make the practice legal for terminally ill patients in the state.

April 23, 2015 5:07 pm

High morale linked to longer survival among elderly

Whether it is cause or effect is unclear, but high morale seems to go along with a longer life, according to a new Scandinavian study.

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