Hot Topics: End of Life Care

Blog Posts (95)

May 16, 2017

End of Life in Global Perspective

by Craig Klugman, Ph.D.

In its April 29th issue, The Economist published an article on people’s “hopes and worries for their end-of-life wishes.” The study compares responses to a set of questions from subjects in the Brazil, Italy, Japan, and the US.…

May 8, 2017

BioethicsTV: Violating consent, living with difficult patient choices, and helping family choose

by Craig Klugman, Ph.D.

On Grey’s Anatomy (Season 13, Episode 22), two storylines looked at when a physician’s desire to do good should outweigh a patient’s choice.…

May 2, 2017

BioethicsTV: Boundary Crossings, Savior Children, and Euthanasia

by Craig Klugman, Ph.D.

In last week’s episode of Chicago Med (Season 2, Episode 21), Dr. Charles cannot separate his personal and professional roles.…

March 31, 2017

BioethicsTV: Aggressive Treatment Chosen for Patients at the End of Life

by Craig Klugman, Ph.D.

This week’s Thursday night medical TV was all about end of life decision-making and delved into the questions of how much aggressive treatment is too much, what happens when physicians lose clinical distance, and who makes decisions for patients.…

March 3, 2017

BioethicsTV: Communication Challenges

by Craig Klugman, Ph.D.

Chicago Med (Season 2, Episode 15) focused on problems with communication These ranged from offered a guide to when not to work with the media, violating HIPAA, to talking to students about dangerous treatments.…

February 13, 2017

The Death of Aid-in-Dying in DC

by Craig Klugman, Ph.D.

I recently gave a talk to a local chapter of a national physicians’ health care group where I was talking about what end of life could look like under a single payer health care system.…

January 25, 2017

CPR and Ventricular Assist Devices: The Challenge of Prolonging Life Without Guaranteeing Health

by David Magnus and Danton Char

The woods decay, the woods decay and fall,
The vapours weep their burthen to the ground,
Man comes and tills the field and lies beneath,
And after many a summer dies the swan.

December 1, 2016

BioethicsTV (November 2016): Informed consent, HIV organ transplants, Forgiveness, Assisted Suicide, Treating Prisoners, Undue Influence in Consent, and Failure to Vaccinate

by Craig Klugman, Ph.D.

Grey’s Anatomy (Season 13, Episode 9). A building collapses when a landlord has failed to make necessary repairs a year after an earthquake.…

November 15, 2016

Making Progress in Improving End-of-Life Care

This past week the JAMA Network and the Kaiser Family Foundation published a one-page graphic providing the latest data and information about Medicare patients and end-of-life care. JAMA. 2016;316(17):1754. In 2014, there were 2.6 million total deaths in the US; 2.1 million or about 80% of the total were persons covered by Medicare. These 2.1 million 2014 Medicare decedents accounted for 13.5% of all Medicare spending. That is about $35,529 per Medicare beneficiary who died in 2014. Other Medicare beneficiaries – those who did not die in 2014 – cost the system about $9,121 per person. This is a remarkable difference from 1978, when Medicare decedents in the last year of life accounted for 28% of program expenditures. Lubitz JD, Riley GF. Trends in Medicare payments in the last year of life. N Engl J Med. 1993;328(15):1092-1096. Interestingly, the percentage between 1978 and 1988 did not change.

The new data show that trends have changed over the intervening decades. One of the more definitive descriptions of Medicare expenditures for beneficiaries in the last year of life was published in the New England Journal of Medicine in 1993. Lubitz JD, Riley GF. Trends in Medicare payments in the last year of life. N Engl J Med. 1993;328(15):1092-1096. In some respects the data may not be exactly the same, for example, one compares payments in calendar years, and the other the last 12 months of patients’ lives; but the trends are fairly clear anyway:

·         In 1988, Medicare charges for decedents were 6.9 times those for other Medicare patients. In 2014, Medicare charges for decedents were 3.7 times those for other Medicare patients. That was a 46% reduction in charges for end of life care from 1988.

·         In looking specifically at the 65-year-old range age group of Medicare beneficiaries who died in 1988 and 2014 respectfully, decedent charges were 10.6 and 7.4 times higher than other Medicare beneficiaries in the category. This was a 30% reduction in charges for end-of-life care from 1988.

·         In 2000, about 21% of Medicare patients who died that year received hospice care; in 2014, about 46% of Medicare patients who died that year received hospice care. The number of dying Medicare patients referred to hospice over the 14-year period more than doubled.

·         In 2000, total Medicare hospice spending was $2.3 billion; in 2014, total Medicare hospice spending was $10.4 billion. This was a 352% increase over the 14-year period. This growth comes primarily from the time a Medicare decedent is enrolled in a hospice program. The median length-of-stay in hospice has increased from 15 days in 1994 to 18 days in 2014, but the level of hospice services provided was enhanced. Taylor DH Jr, et al. What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare program? Social Science & Medicine. 2007;65(7):1466-1478. Curiously, the percentage of adult patients who died within 7 days of entering hospice care services increased from 22.8% in 1992 to 35.5% in 2014. Han B, et al. National trends in adult hospice use: 1991-1992 to 1999-2000. Health Affairs. 2006;25(3):792-799. National Hospice and Palliative Care Organization 2015 Facts and Figures. http://www.nhpco.org/sites/default/files/public/Statistics_Research/2015_Facts_Figures.pdf.

Regardless, Medicare expenditures for beneficiaries in the last year of life are about half of what they were about 30 years ago. The emphasis on hospice and palliative care services for patients who are near death appears to be making a significant difference in a more appropriate allocation of health care resources while improving the quality of care. But unfortunately, we still have a long way to go in some areas: (1) Many persons 65 and older (73% of respondents) have not discussed end-of-life care preferences with a physician and 40% have not documented end-of-life wishes. (2) Moreover, two-thirds (68%) of physician respondents report not having been trained to discuss end-of-life care with patients.

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.

November 11, 2016

Overcoming The Challenges In Advance Care Planning For Dementia Patients

Many newly diagnosed dementia patients may have capacity and be fully able to state their preferences about future medical care when they lose capacity. Their decisions about risks and benefits of medical treatments while they have capacity flow from their critical interests which are the kinds of interests, which if not satisfied, would make them think they were worse off in some way or that their life had not be worthwhile. When a patient is capable of articulating his or her critical interests we know what is most important about them in terms of making their lives meaningful. So it would seem that preferences that stem from critical interests about future medical care provides the most definitive evidence possible, i.e. substituted judgment, for both medical and family caregivers to have as a basis on which to be reasonably sure they are making decisions that the incapacitated patient herself would make if she were in this same situation.

However, many incapacitated dementia patients who by definition are no longer able to express their critical interests are indeed still able to express preferences based in their experiential interestsExperiential interests are abiding biologically based, immediate interests grounded in the quality of one’s life from activities in which they are finding satisfaction, pleasure, and amusementThe situation becomes particularly challenging when it appears that the incapacitated dementia patient is expressing a preference based on experiential interests that runs contrary to a prior expressed preference stemming from critical interests.

Because patients with severe dementia experience their lives in discrete moments, each expressing its own set of experiential interests, there is also a concern about how to understand the changing self of the patient and interpret her wishes and preferences throughout the transitions, particularly at the end of life. If, in fact, as some authors claim, the patient loses all of her prior personal identity, and becomes a series of fleeting moral agents, then does it follow that her prior wishes stemming from former critical interests are no longer the basis of decision making as she nears the end of her life? Has the whole basis for advance directives been undermined? 

This is a serious matter since advance directives have become the principal means by which individuals while they have capacity can plan ahead and avoid overtreatment at the end of life when they lose capacity, as well as reduce the burden of decision making on loved ones. This is a particular concern of patients with early dementia who fear they will spend future years lingering in a state of dementia being supported by medical technology, while being a burden on their families. Thus, it is important for patient caregivers to have a clear and concise way to discuss end of life care options for patients facing a future of severe dementia.

For example, how should a physician respond if a patient says in a state of capacity that he does not want to live when he becomes fully demented? What are the obligations of his caregivers to respond to his likely experiential interests after he loses capacity, especially to provide something as basic as food? When is it permissible to discontinue nutrition and even hydration? These and other questions must have answers that are ethically and legally permissible, amenable to simple explanation and implementation, if advance directives are to be of value to the patient. In what follows I’ll attempt to sketch a strategy.

To begin, instead of focusing on fleeting selves during dementia, it is important to see each patient, from capacity to incapacity and death, as an individual human being with changing, but organically connected interests over time. Each individual patient will remain, as all other human beings, a single, evolving biological being, often within a network of relationships, until death. Patients should be assured that as they change over time that they will be cared for at every stage and their comfort will be assured. For those few patients with capacity who might say, “I do not want to be provided food in any form when I lose capacity,” they need to be educated about what might lie ahead. If after losing capacity, they should be informed that a desire to eat and enjoy other pleasures, such as social interaction, is not precluded by the progression of their disease; they should reassured that they will receive pleasure and comfort from these experiences. In short, during the times the patient is still enjoying daily life, all basic supportive measures, such as food, water, social interaction, and nursing care will be provided; however, regarding medical interventions, only those life prolonging interventions will be provided that carry no burden or suffering, such as a simple antibiotic for an infection or pneumonia (and even some of those may be omitted if so specified by the patient in advance). But as the patient’s natural, biological experiential interests begin to wane, especially with the loss of appetite, there will be, accordingly, less intensive responses to match the patient’s changing needs. This pattern will continue until the patient’s interests are such that feeding and fluids are no longer required because the patient is no longer interested in eating. At that point, the patient will be in the final stages of dying, which requires only pain management, touching, and all appropriate forms of comforting. In summary, the patient’s critical interests will become more prominent as a factor in decision making as the patient’s experiential interests wane.


I have greatly summarized a complex plan of comfort care for patients with advanced dementia, a project on which I am working in much greater detail. My point in developing this plan is to neutralize the potential concerns over incongruences between critical interests and experiences expressed by patients with severe dementia that would otherwise undermine the validity of advance directives. We cannot allow the complex challenges of caring for dementia patients become a barrier to patients being given the opportunity to plan for their future medical care.  

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 (13)

American Journal of Bioethics: Volume 17 Issue 5 - May 2017

Caring for Patients or Organs: New Therapies Raise New Dilemmas in the Emergency Department Arjun Prabhu, Lisa S. Parker & Michael A. DeVita

American Journal of Bioethics: Volume 17 Issue 2 - Feb 2017

Irrational Exuberance: Cardiopulmonary Resuscitation as Fetish Philip M. Rosoff & Lawrence J. Schneiderman

American Journal of Bioethics: Volume 17 Issue 2 - Feb 2017

LVAD-DT: Culture of Rescue and Liminal Experience in the Treatment of Heart Failure Frances K. Barg, Katherine Kellom, Tali Ziv, Sarah C. Hull, Selena Suhail-Sindhu & James N. Kirkpatrick

American Journal of Bioethics: Volume 17 Issue 2 - Feb 2017

CPR and Ventricular Assist Devices: The Challenge of Prolonging Life Without Guaranteeing Health David Magnus & Danton Char

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

News (391)

March 10, 2017 9:00 am

Drugs are killing so many people in West Virginia that the state can’t keep up with the funerals (Washington Post)

Deaths in West Virginia have overwhelmed a state program providing burial assistance for needy families for at least the fifth year in a row, causing the program to be nearly out of money four months before the end of the fiscal year, according to the state’s Department of Health and Human Resources (DHHR). Funeral directors in West Virginia say the state’s drug overdose epidemic, the worst in the nation, is partly to blame.

November 11, 2016 8:00 am

Colorado passes medical aid in dying, joining five other states (Denver Post)

Colorado passed a medical aid in dying measure Tuesday that will allow adults suffering from terminal illness to take life-ending, doctor-prescribed sleeping medication.

October 21, 2016 8:00 am

The dangers of euthanasia-on-demand (Chicago Tribune)

If the Dutch Cabinet gets what it wants, citizens who feel they have a “completed life” soon will be able to request public support for help in ending their lives. It is a frightening precedent that other nations ought not follow, and a policy the Dutch ought to reject.

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.

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