Tag: autonomy

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Charlie Gard, the New England Journal of Medicine, and the Limits of “Conscience”

I would venture that most bioethicists would agree it would be ethically permissible to remove life support and active care from little Charlie Gard, and let him die.   The hospital in Britain where he has been receiving his care wants to do that, and the courts agree.  But why do they insist on this action when his parents want to transfer him for another try at experimental treatment, have raised the money, and reportedly have a center in the US willing to accept him for such an attempt?

I can think of two reasons.  One is a frank utilitarian insistence on limiting costs.  It has been publicly charged that is precisely the motive for this and similar recent cases in the U.S.

Or it could be that those caregivers who argue against the futility of such care do so on conscience grounds.  This is at least a more charitable reading.

But if that is the case, then might we not ask:  on what grounds do such conscience concerns mandate blocking the wishes of the baby’s parents—setting aside just how quickly the futility of further care would be evident?  It is commonly argued that practitioners who wish not to provide abortions or participate in assisted suicide retain a professional obligation to refer to someone who will perform the procedure in question.

So why don’t we demand that the British hospital actively refer Charlie’s parents to another facility?  Just wondering…

Maybe the parents in this case are the ones appealing to conscience, but, in the view of the medicolegal authorities, wrongly so. 

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.

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Medical Decision-Making In the Tragic Life of Charlie Gard

by Craig Klugman, Ph.D.

On Friday, Charlie Gard is scheduled to have his life support discontinued. Charlie Gard is an 11-month-old baby born with RRM2B encephalomyopathic mitochondrial DNA depletion syndrome—a rare genetic disorder with no cure. Those with the mutation live at most into early childhood with a multitude of life threatening conditions (lactic acidosis, ammonia build up, heart abnormalities). Charlie suffers from seizures, cannot independently breathe. He is also blind and deaf. Great Ormond Street Hospital (London) and Charlie’s doctors believe there is nothing more medically that can be done to benefit him and requested to remove his life sustaining treatment. Connie Yates and Chris Gard, his parents, believe that there is a chance of a miraculous cure in an experimental nucleoside treatment in the United States, even though the technique has never been tried for this condition. In the words of the unnamed U.S. specialist, nucleoside treatment would provide a “small hope” for helping

The case has gone through the British courts and the European Court of Human Rights, all of which agreed with the hospital. They declared that prolonging Charlie’s life would be “inhumane and unreasonable.” The courts believed that the experimental treatment in the US would be futile and could cause Charlie much suffering. The European Court ruled on July 4 that life support can be removed on Friday.

Under British law, when parents and physicians disagree on treatment, the courts normally intervene and are the final decision-makers. Unlike in the US, the highest value is the best interest (benefit) to the child rather than parental rights to make decisions for their child.

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.

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In the Journals – June 2017, part two by Aaron Seaman

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

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.

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The Limits of Choice: Abortion and Assisted Dying

Michelle Oberman compares abortion and assisted dying and argues that focusing on the ‘right to choose’ risks ignoring the social and economic factors that shape and constrain our choices.

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I’ve watched the trend toward legalizing physician assistance in dying with a vague sense of alarm. My peers, healthy and wealthy, are puzzled by my response. How is this different from abortion, they ask? You’re pro-choice on abortion, so why wouldn’t you be for assisted dying?

Here’s my problem: As much as I support reproductive rights, I am weary of the rhetoric of ‘choice’ as it applies to great swaths of women who have abortions. I’ve spent the past six years studying abortion in the United States, and in countries like El Salvador where abortion is completely banned. The more I’ve learned about why many women have abortions, the less I see abortion as a choice. Abortion is often a coerced response to desperate circumstances.

When we focus on the question of choice – framing the issue as one of individual liberty – we ignore entirely the social and economic factors that shape and constrain choice. Such constraints lead many women to undergo abortions they might otherwise deeply prefer to avoid. The most common reason that women give for seeking an abortion is financial. It is expensive to have a baby, to pay for day care, to feed, clothe, and house a child. For marginally-employed women, having a baby necessarily means plunging themselves and their families deeper into poverty.

We’ve spent decades fighting over abortion, yet we have done little to offset the economic pressures that compel some women to have one.

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.

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Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

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.

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Hospital care. An ethical reflection on the Ashya King case

Hospital care ethics? It seems unacceptable that the English hospital could not allow the parents to use the therapy that they, with scientific information, preferred and Hospital could not give.

Media coverage of the case of Ashya King, a 5-year-old English boy with hospital care wich was diagnosed with a malignant brain tumour, has done little to clarify the drastic measures taken by the English authorities, after a complaint was filed against his parents by Southampton General Hospital, for having deprived a minor with a life-threatening condition of proper medical care.

Parents Odyssey

The parents had stated since the child had been diagnosed with medulloblastoma (a type of serious brain cancer) that they did not wish to subject him to the intensive radiotherapy treatment proposed by the hospital, as they considered it very aggressive; moreover, they also believed that the most serious side effects could be avoided with proton therapy. When the hospital told them that they could not receive any other treatment apart from the one they could offer, they decided to flee the country without seeking medical approval in order to avoid further delays, taking advantage of temporary approved leave while the child recovered satisfactorily from an operation. Hence, they came to Spain on 28th August this year, with the intention of selling their house in Malaga, to meet the very high costs of the chosen treatment and to be able to go immediately to Prague so that the boy could undergo the aforementioned therapy.

As a result of the European arrest order imposed on the parents following the complaint by the English health authorities, they were arrested by Spanish police in Malaga and kept in isolation for several days, during which time, the child remained in hospital.

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.

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Advance Care Planning and End of Life (ACPEL) Conference

The program for the 2017 Advance Care Planning and End of Life (ACPEL) Conference in Banff is now available.


Pre-Conference Sessions (Part 1)
Session 1: CRIO 
1. How do people with disabilities perceive advance care planning – Robin Gray, University of Calgary


2. Differences in survey methodology of two Advance Care Planning survey polls conducted in Alberta, Canada – Sunita Ghosh, Alberta Health Services-CancerControl


3. Efficacy of Advance Care Planning and Goals of Care Designations Discussions: A Randomized Controlled Trial and Video Intervention – Maureen Douglas, University of Alberta
  
4. Identification of indicators to monitor successful implementation of Advance Care Planning policies: a modified Delphi study – Patricia Biondo, University of Calgary

5. The economics of advance care planning, Konrad Fassbender, University of Alberta; Covenant Health

Session 2: Health Care Consent, Advance Care Planning, and Goals of Care: The Challenge to Get It Right in Ontario

Health Care Consent, Advance Care Planning, and Goals of Care: The Challenge to Get It Right in Ontario – Tara Walton, Ontario Palliative Care Network Secretariat

Session 3: How to Invite Clinicians to Initiate ACP

1. How to Invite Clinicians to Initiate ACP to Residents, Patients, and Family Carers? – Luc Deliens  
  
2. Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study – Aline De Vleminck, Free University of Brussels & Ghent University

Pre-Conference Sessions (Part 2)

Session 1: Faith Based Workshop

Inviting the voice of Spirituality within the conversation of Advanced Care Planning – Thomas Butler, Bon Secours Health System Inc.

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.

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2nd International Conference on End-of-Life Law, Ethics, Policy, and Practice

Check out this remarkable collection of concurrent sessions coming up at the 2nd International Conference on End-of-Life Law, Ethics,
Policy, and Practice (ICEL) in Halifax.



The Ethics of POLST
Lloyd Steffen


The Perils of POLST
Jean Abbott


Advanced Directives and Advanced Care Planning
Peter Saul


“Rock, Paper, Scissors” – Ideologies of End of Life Care for Older People in Hospital
Laura Green


The Cultural Construction of End of Life Issues in Biomedicing: Anthropological Perspectives
Betty Wolder Levin


Caregiver Perspectives of Palliative and End of Life Care for Individuals at End-Stage Dementia in Newfoundland and Labrador: A Qualitative 
Phenomenological Perspective
Barbara Mason


End of Life Regulation and Recent Evolutions in France
Veronique Fournier


To Live and Let Die. Withholding and Withdrawing Life Sustaining Treatment in Argentina: From Therapeutic to Judicial Obstinacy
Maria Ciruzzi


When and How I Shan’t Live: Refusing Life-Prolonging Medical Treatment and Article 8 ECHR
Isra Black


Divorcing Mercy Killing from Euthanasia
Bryanna Moore


The Shift Away from Suicide Talk: Incorporating Voices of Experience
Phoebe Friesen


Elderly Who are Ready to Give Up on Life and the Right to Autonomy
Michelle Habets


Dutch GP’s Views on Good Dying and Euthanasia
Katja ten Cate


Medical Aid in Dying in New York State: Physician Attitudes and Impact of Framing Bias
Brendan Parent


Physicians’ Perceptions of Aid in Dying in Vermont
Ari Kirshenbaum


A New American Threat to Open Discussion of End-of-Life Issues
Robert Rivas


Demedicalised Assistance in Suicide
Martijn Hagens


The Human Rights Implications of the Blanket Ban on Assisted Suicide in England and Wales
Stevie Martin


A Year in Review: The Who, When, Why and How of Requests for Medical Aid in Dying in Quebec
Lori Seller and Veronique Fraser


Medical Aid in Dying: An Update from Québec
Michelle Giroux


Regulating MAiD: The Medical Regulatory Perspective
Andréa Foti


Patients with Parkinson’s Disease, Caregivers’, and Healthcare Providers’ Perspectives on Advance Care Planning on End-of-Life Care
Kim Jameson


‘You’re Going to Die.

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.

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The biological status of the early human embryo. When does human life begins?

“Those who argue that that embryo can be destroyed with impunity will have to prove that this newly created life is not human. And no-one, to the best of our knowledge, has yet been able to do so.”

Introduction

In order to determine the nature of the human embryo, we need to know its biological, anthropological, philosophical, and even its legal reality. In our opinion, however, the anthropological, philosophical and legal reality of the embryo — the basis of its human rights — must be built upon its biological reality (see also HERE).

Consequently, one of the most widely debated topics in the field of bioethics is to determine when human life begins, and particularly to define the biological status of the human embryo, particularly the early embryo, i.e. from impregnation of the egg by the sperm until its implantation in the maternal endometrium.

Irrespective of this, though, this need to define when human life begins is also due to the fact that during the early stages of human life — approximately during its first 14 days — this young embryo is subject to extensive and diverse threats that, in many cases, lead to its destruction (see HERE).

These threats affect embryos created naturally, mainly through the use of drugs or technical procedures used in the control of human fertility that act via an anti-implantation mechanism, especially intrauterine devices (as DIU); this is also the case of drugs used in emergency contraception, such as levonorgestrel or ulipristal-based drugs (see HERE), because both act via an anti-implantation mechanism in 50% of cases.

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.

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The biological status of the early human embryo. When does human life begins?

“Those who argue that that embryo can be destroyed with impunity will have to prove that this newly created life is not human. And no-one, to the best of our knowledge, has yet been able to do so.”

Introduction

In order to determine the nature of the human embryo, we need to know its biological, anthropological, philosophical, and even its legal reality. In our opinion, however, the anthropological, philosophical and legal reality of the embryo — the basis of its human rights — must be built upon its biological reality (see also HERE).

Consequently, one of the most widely debated topics in the field of bioethics is to determine when human life begins, and particularly to define the biological status of the human embryo, particularly the early embryo, i.e. from impregnation of the egg by the sperm until its implantation in the maternal endometrium.

Irrespective of this, though, this need to define when human life begins (see our article  is also due to the fact that during the early stages of human life — approximately during its first 14 days — this young embryo is subject to extensive and diverse threats that, in many cases, lead to its destruction (see HERE).

These threats affect embryos created naturally, mainly through the use of drugs or technical procedures used in the control of human fertility that act via an anti-implantation mechanism, especially intrauterine devices (as DIU); this is also the case of drugs used in emergency contraception, such as levonorgestrel or ulipristal-based drugs (see HERE), because both act via an anti-implantation mechanism in most of the time.

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.