Tag: allocation of resources

Bioethics Blogs

Harvey and Irma: Bioethics in Natural Disasters

by Craig Klugman, Ph.D.

This is a time of disaster. Last week Hurricane Harvey devastated Southeast Texas, a place where I did my doctoral studies. This week we are awaiting Hurricane Irma, the strongest hurricane to head toward South Florida in 25 years. My family lays in the path of that coming storm. I first became interested in natural disaster in 1989 when my college campus was jolted by a 7.1 earthquake in Northern California.

Bioethics has a role in responding to and preparing for these natural disasters. Most every state, large city and county, and most hospitals have been working on crisis standards of care plans. In 2009 and again in 2012, the Institute of Medicine recommended governments to undertake such planning. Many of us working in bioethics have been involved in these efforts. More specifically, we have been involved with developing ethical frameworks for decision-making, policy-making, and operations during emergency planning.

I worked with Texas during its planning for pandemic flu and for the last 3 years have been part of the ethics subcommittee of Illinois’ workgroup, most recently as chair. Similar groups have produced excellent reports in many places such as Delaware, North Carolina, Michigan, Minnesota, Tennessee, Texas and Toronto. They offer guidance and justification for a varied set of guiding principles and ethical frameworks. All of them hold certain core ideals in common.

First, all of the reports agree that transparency and open communication is essential. Planning needs to involve not only government officials, but also community members.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.

1. Parents’ role in decision-making for children: We need to clarify harm

Much of the media attention to the Gard case has focussed on the rights of parents in decision-making for children, and whether the intervention of the courts in this case means that doctors frequently overrule parents in the UK.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

CHALLENGING TIMES FOR LONG-TERM CARE STAFF

Mary Jo Bernard and Jodie Penwarden call for a review of practices and policies that contribute to hostile working and living conditions in long-term care facilities.

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Violence is on the rise in long-term care facilities. This is due to both an increase in ‘challenging behaviours’ on the part of residents and an increase in the number of front-line staff working alone due to staff shortages. Often, when workers are ill or injured (sometimes as a direct result of rushing through physical labour all day long), their shifts are not covered.

When there are not enough trained staff on the floor, the residents suffer. They sit in soiled clothing with their call bells ringing, they are rushed through unpleasant meal times, and they are pushed in a commode to their shower through common space in nothing but a towel. Meanwhile, staff become demoralized and the environment risks becoming hostile.

A case from O’Leary, Prince Edward Island, first reported in the spring of 2015, demonstrates how a culture of hostility in long-term care facilities can result in poor quality care.

During the summer of 2016, a resident care worker at a government-funded long-term care facility was fired by Health P.E.I after sharing a photo (which is described as a ‘head shot’) of a deceased resident via Snapchat. Health P.E.I. launched an investigation into the incident and learned a number of disturbing facts. The photo that was shared included an inappropriate caption and was forwarded to someone outside of the workplace. As well, over a period of months, the employee in question had shared numerous other photos of vulnerable residents while they were eating, sleeping, or receiving care after a bowel movement.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Diagnosing Failure: The Post-Hoc Report as an Administrative Epilogue by Andrew Lakoff

The World Health Organization recently released its long-awaited final report on the organization’s response to the 2014 Ebola epidemic. The report opens by explaining that, however tragic the epidemic was, it also provides us with a chance to learn. “The sole consolation of the Ebola disaster is that it has galvanised the world into analyzing the failures and ensuring that it is better prepared for the next global health threat,” it states. “Crisis is hardship but also opportunity.”

The release of the report reminds us that alongside the epidemiological end of an epidemic, there is also an administrative end. In the case of the 2014 Ebola epidemic, we can mark the date of the latter much more sharply than the former. On March 29th of this year, the Director-General of the World Health Organization, Margaret Chan, officially terminated the epidemic’s status as a “public health emergency of international concern.” This was a classificatory shift meant to signify a change in how the disease is to be governed. Even as cases of Ebola in West Africa continued to appear, the end of the emergency signaled a return to normalcy, the entry into a period of reflection on the meaning of the event—the “epilogue” of the epidemic narrative (Rosenberg 1989), in which retrospective moral judgment can be made: who is to blame? What should we have done differently?

A surprisingly simple answer to this question was offered last year by the Swedish statistician Hans Rosling, who said: “If you want to blame somebody for this epidemic,” he said, “blame me.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Should providers offer oncofertility to patients with a poor prognosis?





Whereas quality of life issues for cancer patients used to
minimized, and sometimes even ignored, today there is more of a focus on cancer
patients’ quality of life post-cancer. One such quality of life issue is oncofertility,
which is fertility preservation for cancer patients. In many places,
oncofertility is, or is becoming, the standard of care for cancer patients. But
should it be offered to all patients? What about patients who have a very bad
prognosis?


  


Fertility preservation for patients with a poor prognosis
raises a host of ethical issues. Providers may worry that discussing fertility
preservation will give patients false hope about their prognosis. In other
words, these patients may feel their providers deceived them by mentioning
fertility preservation, leading them to believe that their prognosis is not as
bad as they originally thought.


 


Yet, at the same time, pursuing fertility preservation may
be a source of hope and happiness for patients during difficult times. It may
furnish them with mental and physical strength, making them even more motivated
to survive for the sake of their potential future children. Additionally, these
patients, and their families, may feel a degree of inner peace knowing that
part of their lives will continue on in the reproductive material even if they
are never used.


 


Nevertheless, some may argue that, despite any personal and
emotional benefits they may experience, offering patients with a poor prognosis
fertility preservation options is an unjust allocation of resources. From a
utilitarian perspective, it does not make sense to devote resources to patients
who will likely not benefit from them.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Independence Now: The Ethics of Young Adults Living in Geriatric Care Facilities

Sarah Chapple argues that young adults who are living with a disability need access to a variety of appropriate housing and care options

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It may be surprising to learn that one of the most rapidly growing populations in geriatric care facilities is not the elderly, but young adults with disabilities. An estimated 10-15% of residents living in geriatric care homes throughout Canada are young adults with disabilities.

Lack of financial resources, inadequate community resources, and limited family support can force some adults with disabilities to move into a geriatric care facility. The current care and housing options for young adults with disabilities are insufficient.

Living in geriatric care facilities can be challenging for young adults with disabilities. Food, music and recreational activities are all geared towards a much older generation, and living in a setting in which your neighbours continually pass away can be difficult for a young person who may be facing decades of institutional living. For example, 33 year-old Peter Farrah, who lives in an Ottawa geriatric care facility, claims it has adversely affected his mental health, saying he often gets “stressed out about being here,” one time getting into an “angry fit.” Others have also shared their experiences of moving into geriatric care due to lack of other housing options.

The move into a geriatric care facility often results in the separation of young adults with disabilities from their families and home community. Families may need to drive significant distances or use toll bridges and unreliable transit options to visit their loved ones, even in relatively well-serviced areas.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.