Tag: terminally ill

Bioethics Blogs

Federal “Right to Try” Legislation – perpetuating a misguided skepticism towards the FDA

Cross-posted from the CRITical Thinking blog. By Jeanie Kim The “right to try” (RTT) movement presents a narrative that pits patients against the FDA. Supporters of RTT, powered by the libertarian Goldwater Institute, have pushed for laws that let terminally ill patients bypass … Continue reading

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

‘Being a burden’: a illegitimate ground for assisted dying

The issue of the legality in England and Wales of physician-assisted suicide has recently been revisited by the Court of Appeal. Judgment is awaited. The judgment of the Court of Appeal, granting permission for judicial review, is here.

The basic issue before the Court of Appeal was the same as that in Nicklinson v Ministry of Justice and R (Purdy) v DPP: does the right to determine how one lives ones private life (protected by Article 8 of the European Convention on Human Rights)  confer a right to have an assisted death?

Many factors have been said to be relevant to decisions about assisted dying. They include are intractable pain (rather a weak criterion, given modern palliative methods), hopeless prognosis – likely to result in death in a short time, and simple autonomy (‘It’s my right to determine where, when, and in what circumstances I end my life, and that’s an end of the matter’). One factor, commonly in the minds of patients asking for help in ending their lives, but rarely mentioned by advocates of assisted dying, is that the patient feels that she is a burden to her family and carers.

A recent systematic review of the literature concluded that 19-65% of terminally ill patients felt that they were a burden to others.  The 2016 Report relating to the Oregon Death with Dignity Act  concluded that 48.9% of patients whose lives were ended under the Act cited seeking an assisted death cited ‘being a burden’ as one of their concerns.

Concern about being a burden should not be a criterion to which any law relating to assisted dying should be permitted to have regard.

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

Jewish Guide to Practical Medical Decision Making

Check out
this new 368-page
book
 from Rabbi Jason Weiner: Jewish Guide to Practical
Medical Decision Making.


Due to rapid advances in the medical field, existing books on Jewish medical
ethics are quickly becoming outdated. 
Jewish
Guide to Practical Medical Decision Making
 seeks to remedy that by
presenting the most contemporary medical information and rabbinic rulings in an
accessible, user-friendly manner. 


Rabbi Weiner addresses a broad range of medical circumstances such as surrogacy
and egg donation, assisted suicide, and end-of-life decision making. Based on
his extensive training and practical familiarity inside a major hospital, Rabbi
Weiner provides clear and concise guidance to facilitate complex
decision-making for the most common medical dilemmas that arise in contemporary
society.


1. Facilitating Shared Decision-Making 

A. Understanding Terminology: Key Concepts to Facilitate
Collaborative Decision-Making

B. Truth-Telling: When Painful Medical Information Should
and Should Not Be Revealed 

C. Mental Illness: Determining Capacity and Proper Treatment
in Accordance with Jewish Law  


2. How Much Treatment? 

A. Risk and Self-Endangerment: Determining the
Appropriateness of Attempting Various Levels of Dangerous Medical Procedures

B. Making Decisions on Behalf of an Incapacitated Patient

C. Pediatrics: Jewish Law and Determining a Child’s Consent
and Treatment 

D. Palliative Care and Hospice in Jewish Law and Thought


3. Prayer  

A. Is Prayer Ever Futile? On the Efficacy of Prayer for
the Terminally Ill 

B. Viduy: Confessional Prayers Prior to Death


4.  At the End of Life

A. Advance Directives and POLST Forms  

B. End-of-Life Decision-Making: DNR, Comfort Measures,
Nutrition/Hydration, and Defining “Terminal” in accordance with Jewish Law

C. Withholding vs. Withdrawing: Deactivating a
Ventilator and Cessation of Dialysis and Cardiac Defibrillators at the End of
Life

D. Case

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 News

Review of countries where Euthanasia has been legalised. Increaing of involuntary euthanasia, without consent by patients

Euthanasia a Slippery slope that could end in involuntary euthanasia

Euthanasia was legalised in Belgium in 2002, where is defined as “the intentional termination of a patient’s life by a physician at the patient’s request”, so that only voluntary euthanasia may be legally carried out in Belgium (J Med Ethics 41; 625-629, 2015). However, this legal requirement of voluntarism is not always fulfilled.

Thus, a study conducted in Flanders in 1996 found that 3.3% of cases of euthanasia had occurred without the prior request of the patient. In other words, they were involuntary euthanasias. Another study (also in Flanders) found that there had been 1796 cases of involuntary euthanasias (3.2%). A more recent study from 2007 found that the percentage of involuntary euthanasia was 1.8%, while another in 2013 found 1.7%.

However — and we believe this is important — the percentage of involuntary euthanasia in patients who were 80-years-old or over rose to 52.7%, while in those with diseases other than cancer, this figure reached 67.5%. The decision was not discussed with the patient in 77.9% of cases (J Med Ethics 41; 625-629, 2015).

Canada experience

A Recent statement of Professor Somerville, who spent 40 years living and working in Canada,  has recently returned home to Australia to take up the position of Professor of Bioethics in the School of Medicine at The University of Notre Dame Australia, Sydney where she says claims by Australian pro-euthanasia advocates, including media personality Andrew Denton, that euthanasia and assisted suicide is working safely overseas don’t stand up to basic scrutiny.

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

Charlie Gard: An Ethical Analysis of a Legal non-Problem

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment. 

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 News

The Charlie Gard case. An ultimate dispassionate ethical reflexion

It is dangerous to exclude ethical judgment from medical decisions in which death is knocking at the door of life

In medical cases in which death comes knocking at the door of life, circumstances arise that are not easy to judge and even less easy to resolve. Such cases can be paradigmatic, like that of Charlie Gard. I believe, therefore, that the first thing we must do is to treat all parties with respect and courtesy, especially those who most suffer for being the protagonists of the events, in this instance the sick child and his parents.

From an ethical point of view, there are a number of aspects that should be evaluated. If I forget one, it is not with the intention Great Ormond Street Hospital doctors. Aspects that should be evaluatedof ignoring it, but because of my own limitations.

Great Ormond Street Hospital (NHS) doctors

To begin with, it should be said that Great Ormond Street Hospital (GOSH) is a leading children’s hospital, one of the most prestigious in the United Kingdom, so we should assume that its medical team — and in all likelihood those who took care of Charlie — are highly professional.

Gosh pleaded for Charlie to be taken off the mechanical ventilation

In April this year, when Mr Justice Francis issued his first verdict, the team from the London hospital pleaded for Charlie to be taken off the mechanical ventilation keeping him alive. This meant the immediate death of the child.

Around the same time, a distinguished American doctor, Dr Michio Hirano, offered Charlie’s parents the possibility of treating the baby with a novel therapy, which, it seems, had shown some beneficial effect in another American child who had a disease similar to that of Charlie’s (Child tried by the experimental treatment Charlie Gard’s) In my opinion this offer ethically conditioned the decision taken by the doctors at GOSH.

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 News

Charlie Gard: Judge Allows Parents of Terminally Ill Infant to Consult American Doctor

A London High Court judge has ruled that terminally ill infant Charlie Gard can be examined by a doctor from the United States, amidst his parents’ battle to pursue experimental therapy abroad instead of the terminated life support prescribed by his British doctors. The 11-month-old infant was born with mitochondrial DNA depletion syndrome, a rare genetic condition that causes muscular degeneration, respiratory failure and motor skill decline. Most children with the disease fail to live past early childhood; Charlie’s doctors have stated that it will eventually cause his death.

In Britain, courts rather than parents dictate children’s best interests in the face of opposing medical advice. Though Charlie’s doctors at Great Ormond Street Hospital were granted court permission in April to remove the infant from life support, Charlie’s parents’ lawyers have since been advocating for the right to maintain life support and pursue alternative therapy despite his doctors’ insistence on the low likelihood of the proposed therapy’s effectiveness, and the high likelihood of lifelong pain with the disease.

The high-profile case has attracted the attention of President Trump, Pope Francis, and anti-abortion groups, all of whom have vocalized their support for Charlie’s parents interests. Several notable medical authorities and colleges have expressed their support for the hospital’s consensus or condemned the politicization of the case. 

Following the judge’s novel permission, a New York-Presbyterian Hospital/Columbia University Medical Center neurologist will evaluate the potential effectiveness of a nucleoside therapy that has successfully prolonged the lifespan of similarly ill patients, though such patients’ conditions have owed to a mutation distinct from Charlie’s.

The case pivots on several bioethical questions that are particularly acute in the context of terminal illness. Where should the law draw the line between parental authority and medical authority? Whose preferences speak for a voiceless patient?

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 News

Texas Governor Greg Abbott Authorizes Use of Experimental Stem Cell Therapies

The government of Texas has passed a bill permitting clinics statewide to use experimental stem cell therapies on select chronically and terminally ill patients. Signed by Governor Greg Abbott, the legislation is akin to the “right to try” laws that have emerged in other states, and sidesteps FDA regulations that prohibit the marketing of unapproved therapies. A possible alternative to approved treatment methods, the law particularly signals hope for patients for whom traditional options are failing or unviable.

Stem cell treatments involve the extraction of stem cells from adult tissues, and their subsequent therapeutic use on patients. Under the new law, the treatment method must be prescribed and administered by a physician, delivered at a hospital or medical center, and overseen by an institutional review board (IRB). Only therapies that have already been tested in human clinical trials are affected by the bill’s expansive permissions.

The contentious legislation has been celebrated by some patient advocates, but condemned by certain leading bioethicists, among them, Ph.D. of  University.

The post Texas Governor Greg Abbott Authorizes Use of Experimental Stem Cell Therapies appeared first on Global Bioethics Initiative (GBI).

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 News

Parents of Terminally Ill Baby Charlie Gard Arrive for Court Hearing that Could Determine His Fate

July 10, 2017

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The 11-month-old boy is battling mitochondrial depletion syndrome, a rare genetic disease that affects his energy production and respiration, and the court was expected to decide whether the wishes of Charlie’s parents to pursue an experimental treatment will be granted.

Flanked by supporters of their cause, Yates and Gard spoke Sunday outside London’s Great Ormond Street Hospital, where Charlie has been kept since November.

They delivered a petition signed by more than 350,000 supporters urging officials to allow their son to be taken to the United States.

… Read More

Image: By sjiong – http://www.flickr.com/photos/sjiong/109817932/, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=6380215

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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.