Hot Topics: End of Life Care

Blog Posts (82)

September 25, 2016

Assisting Persons in Hospice to Cast Early Absentee Ballots

by Steven H. Miles, MD

A friend of mine is dying of metastatic cancer. She does not have long to live; she will possibly die before the end of this year.…

July 1, 2016

BioethicsTV: The Night Shift Needs More Sleep

by Craig Klugman, Ph.D.

Summer is a slow time for television and especially for the medical drama. One show that has been filling this warm weather slot is The Night Shift, a fairly uninteresting and poorly done drama.…

June 8, 2016

BioethicsTV: Grace and Frankie Kill Their Friend

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.…

May 20, 2016

BioethicsTV: Week of May 20 – Assisted suicide, public health crisis management, and making promises

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.…

May 12, 2016

Euthanasia for Reasons of Mental Health

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.…

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.


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Published Articles (9)

AJOB Primary Research: Volume 7 Issue 3 - Jul 2016

A pilot study of neonatologists' decision-making roles in delivery room resuscitation counseling for periviable births Brownsyne Tucker Edmonds, Fatima McKenzie, Janet E. Panoch, Douglas B. White & Amber E. Barnato

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 (388)

September 23, 2016 8:00 am

Researchers Confront an Epidemic of Loneliness (NY Times)

The woman on the other end of the phone spoke lightheartedly of spring and of her 81st birthday the previous week. “Who did you celebrate with, Beryl?” asked Alison, whose job was to offer a kind ear. “No one, I…” And with that, Beryl’s cheer turned to despair.

July 6, 2016 8:05 am

Few Young Doctors Are Training To Care For U.S. Elderly (NPR)

At Edgewood Summit retirement community in Charleston, W.Va., 93-year-old Mary Mullens is waxing eloquent about her geriatrician, Dr. Todd Goldberg. “He’s sure got a lot to do,” she says, “and does it so well.” West Virginia has the third oldest population in the nation, right behind Maine and Florida. But Goldberg is one of only 36 geriatricians in the state.

June 28, 2016 8:31 am

End-Of-Life Care Better For Patients With Cancer, Dementia: Study Finds (Kaiser Health News)

A new study offers surprising findings about end-of-life care — specifically, physicians tend to be more likely to accommodate the advanced-care wishes of patients with cancer or dementia than renal disease, congestive heart failure, pulmonary disease or frailty.

June 20, 2016 8:53 am

Canada Legalizes Physician-Assisted Dying (NPR)

After weeks of debate, Canadian lawmakers have passed legislation to legalize physician-assisted death. That makes Canada “one of the few nations where doctors can legally help sick people die,” as Reuters reports.

June 10, 2016 8:38 am

Who May Die? California Patients and Doctors Wrestle With Assisted Suicide (New York Times)

Beginning Thursday, California will be the fourth state in the country to put in effect a law allowing assisted suicide for the terminally ill, what has come to be known as aid in dying. Lawmakers here approved the legislation last year, after Brittany Maynard, a 29-year-old schoolteacher who had brain cancer, received international attention for her decision to move to Oregon, where terminally ill patients have been allowed to take drugs to die since 1997.

May 24, 2016 8:36 am

Just 5% of Terminally-Ill Cancer Patients Fully Understand Prognosis, Study Finds (ABC News)

Just a fraction of terminally-ill cancer patients fully understood their prognosis according to a new small study published today in the Journal of Clinical Oncology.

May 18, 2016 8:04 am

How Much Time Is Left? Doctors, Loved Ones Often Disagree (US News)

Loved ones acting on behalf of critically ill patients are often more optimistic about outcomes than physicians. But not necessarily because they don’t grasp the gravity of the case, new research suggests.

May 13, 2016 8:41 am


Andrew Levy’s parents knew that the rare and deadly cancer in his blood could not be
beaten, so they began to prepare for the worst. Then something mysterious happened.

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.

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