Hot Topics: End of Life Care

Blog Posts (77)

April 26, 2016

Legal history ignored by opponents of medically assisted death

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.…

April 14, 2016

Review Your Directives this National Healthcare Decisions Day

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.…

April 6, 2016

BIOETHICSTV: Chicago Med-BIID, post mortem egg retrieval, scope of practice and forgiveness

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.…

February 29, 2016

Unadorned: My Testament

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.…

February 12, 2016

Pain Relief is an Ethical Issue

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.


February 10, 2016

Chicago Med Files DNR Under X-File

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.…

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).…

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Published Articles (8)

AJOB Neuroscience: Volume 7 Issue 1 - Apr 2016

A Closer Look at Health Care Providers' Moral Distress Regarding the Withdrawal of Artificial Nutrition and Hydration Kari Esbensen

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 (380)

April 28, 2016 9:53 am

Taking Sperm From the Dead (The Atlantic)

Post-mortem sperm extraction gives widows the chance to have children with the recently departed.

April 18, 2016 9:47 am

Doctors Unsure About How To Talk With Patients About End-Of-Life Care

Doctors know it’s important to talk with their patients about end-of-life care. But they’re finding it tough to start those conversations. When they do, they’re not sure what to say, according to a national poll released Thursday.

April 15, 2016 9:58 am

Justin Trudeau Seeks to Legalize Assisted Suicide in Canada

The government of Prime Minister Justin Trudeau introduced legislation on Thursday to legalize physician-assisted suicide for Canadians with a “serious and incurable illness,” which has brought them “enduring physical or psychological suffering.”

March 28, 2016 11:46 am

Choosing to die at home does not hasten death for patients with terminal cancer

A large study from Japan found that cancer patients who died at home tended to live longer than those who died in hospitals. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings suggest that oncologists should not hesitate to refer patients for home-based palliative care simply because less medical treatment may be provided.

February 10, 2016 5:57 pm

Assisted Suicide Study Questions Its Use for Mentally Ill

A new study of doctor-assisted death for people with mental disorders raises questions about the practice, finding that in more than half of approved cases people declined treatment that could have helped, and that many cited loneliness as an important reason for wanting to die.

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.

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