The Montanans Against Assisted Suicide organize conference on June 29, 2013 in Great Falls Montana.

The Montanans Against Assisted Suicide have organized an interesting and provocative afternoon conference on Saturday June 29, 2013; (1 pm - 4 pm) Registration begins at noon  at the Hilton Garden Inn - 2520 14th St SW, Great Falls Montana. 


Alex Schadenberg, Executive Director of the Euthanasia Prevention Coalition and Chair of the Euthanasia Prevention Coalition - International will be the keynote speaker at the conference. The Euthanasia Prevention Coalition is a barrier to the legalization of assisted suicide and euthanasia world-wide. Alex Schadenberg is a recognized international expert on assisted suicide and euthanasia. He is a warm, friendly and engaging speaker.

Other speakers include:
Margaret Dore: President - Choice is an Illusion, Washington State Attorney; 
Phil Tummarello: Ret. Police Sergeant Inspector, Stevensville Montana; 
Bradley Williams: President - Montanans Against Assisted Suicide; 

Margaret Dore

Carol Mungas, Great Falls Montana.

Topics:
Margaret Dore: "A Legal Perspective - Is the Baxter decision wrong?"
Phil Tummarello: "A Law Enforcement Perspectives"
Alex Schadenberg: "Assisted Suicide - A Threat to Public Safety"
Carol Mungas and other Voices.

For more information contact Bradley Williams at: 406-531-0937 or bradley@montanansagainstassistedsuicide.org 

Link to the conference poster.

A Simple Way to Reduce Suicides

This article was published, June 2, on the New Times blog and then published in the New York Times, page A21 on June 3. Ezekiel J. Emanuel on health policy and other topics.

Ezekiel J. Emanuel

By Ezekiel J. Emanuel, New York Times, June 2, 2013

Every year about a million Americans attempt suicide. More than 38,000 succeed. In addition, each year there are around 33,000 unintentional deaths by poisonings. Taken together, that’s more than twice the number of people who die annually in car accidents.

The tragedy is that while motor vehicle deaths have been dropping, suicides and poisonings from medications have been steadily rising since 1999. About half of suicides are committed with firearms, and nearly 20 percent by poisoning. A good way to kill yourself is by overdosing on Tylenol or other pills. About 90 percent of the deaths from unintentional poisonings occur because of drugs, and not because of things like household cleaners or bleach.

There is a simple way to make medication less accessible for those who would deliberately or accidentally overdose — and that is packaging.

We need to make it harder to buy pills in bottles of 50 or 100 that can be easily dumped out and swallowed. We should not be selling big bottles of Tylenol and other drugs that are typically implicated in overdoses, like prescription painkillers and Valium-type drugs, called benzodiazepines. Pills should be packaged in blister packs of 16 or 25. Anyone who wanted 50 would have to buy numerous blister packages and sit down and push out the pills one by one. Turns out you really, really have to want to commit suicide to push out 50 pills. And most people are not that committed.

Sound ridiculous? Consider some data.

In September 1998, Britain changed the packaging for paracetamol, the active ingredient in Tylenol, to require blister packs for packages of 16 pills when sold over the counter in places like convenience stores, and for packages of 32 pills in pharmacies. The result: a study by Oxford University researchers showed that over the subsequent 11 or so years, suicide deaths from Tylenol overdoses declined by 43 percent, and a similar decline was found in accidental deaths from medication poisonings. In addition, there was a 61 percent reduction in liver transplants attributed to Tylenol toxicities. (Although it was a long and detailed study, some studies got a different result. One in Ireland, for example, found no reduction in overdoses.)

Not only can blister packs reduce suicide attempts by adults, but also poisonings of children. After the Food and Drug Administration required blister packaging for iron pills, which cause poisoning death in young children, the number of iron-ingestion calls to poison control centers in the country dropped by about 33 percent and the number of deaths went almost to zero.

Why haven’t we seen more blister packages? One reason is money. Manufacturers would have to redesign packaging, and the blister packaging would cost more compared with loose pills in a bottle. The other main reason is that some consumers — notably people with arthritis — might find it challenging to open the packages.


But considering the tens of thousands of deaths and emergency room visits, these reasons seem a bit feeble. The packaging should be changed.

Previous articles concerning suicide that were published on this blog:
- Canadian study proves that the suicide contagion effect exists.
- Suicide rate in Oregon continues to rise faster than the national average.
- Pro-suicide advocacy in the Globe and Mail.

The Dutch kill children with disabilities and people with dementia by euthanasia.

Two for the price of one. Yesterday Wesley Smith published on his blog two excellent articles concerning the Dutch and euthanasia. The Netherlands legalized euthanasia in 2002 after their courts - defacto legalized - euthanasia in 1984. Since then the practice of euthanasia in the Netherlands has developed by incremental extension, meaning that the more something becomes acceptable, the more it is allowed.

I use the term incremental extension because the euthanasia lobby tell me that the slippery slope doesn't exist.

The following two articles are about: 

1. Hypocrisy of the Dutch supporting the UN Treaty on Persons with Disabilities while also euthanizing newborns with disabilities, and 

2. Dutch doctors being by the government to euthanize more people with dementia.

1. Hypocrite Dutch support UN Treaty on Persons with Disabilities.

Wesley Smith

By Wesley Smith, June 2, 2013

The NYT editorialized today in favor of the UN Convention on the Rights of Persons with Disabilities, chastising Republicans for blocking USA ratification. That got me to thinking that the Dutch authorities allow doctors to kill babies born with disabilities and I don’t recall a single NYT editorial in defense of those murdered children.

Also, I wondered whether the Dutch have ratified the Convention, which states in part:

States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. To this end, States Parties undertake:…b. To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities:

And then there is this simple statement:

Article 10 – Right to life States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

In answer to my question: Why yes, the Netherlands has ratified the Convention. Hypocrites!

The Netherlands, by permitting doctors to kill disabled babies, is in direct violation of this treaty that the government ratified. No doubt, defenders of Netherlander infanticide would claim that it complies with the part of the treaty requiring states to serve the “best interests” of children with disabilities. But killing is the epitome of prejudice and discrimination, because it denies the chance of the murdered children to have any kind of interests at all.

2. Dutch doctors pushed to euthanasia more people with dementia.

Wesley Smith

By Wesley Smith, June 2, 2013

It is rare when the government has to push Netherlander doctors to be more aggressive with euthanasia. But that is what is happening around the killing of Alzheimer’s patients based on an advance directive. From the British Medical Journal story:

Senior figures in Dutch medicine and politics are set to decide whether advanced euthanasia directives can, in practice, replace verbal requests if patients with dementia are no longer able to express their wishes. Doctors in the Netherlands have expressed “difficulties” with this “grey area,” arguing that some communication is essential if they are to understand properly their patients’ suffering and wishes. 

But eminent figures in medical ethics argue that doctors are placing themselves above the 2002 euthanasia law. This law states that doctors can act on an earlier advanced directive once a patient becomes incompetent. A public debate has raged on this subject since the Dutch Medical Association, in its response to the government’s latest research assessing euthanasia policy, proposed adapting the law. It suggested that the legally required second medical opinion must not only see but also communicate with the patient. 

Former health minister Els Borst, who piloted the euthanasia law through parliament, has since argued: “A professional body cannot choose its own interpretation of the law.”

But it seems to me the doctors are the ones following the law. What if the patient no longer wants to die? What if the patient isn’t really suffering? The law says killing can be done only when that is required to end suffering. But the government leaders are essentially saying, “What does that matter? The advance directive is what counts!”

The bottom line here is that once a society broadly accepts the poison of euthanasia, the killable categories never stop expanding. Culture of death, Wesley? What culture of death?

The UK police should be investigating the psychiatrist that Michael Irwin is protecting.

This article is written by Dr. Peter Saunders, the campaign director for the Care Not Killing Alliance in the UK. It was originally published on his blog.

By Peter Saunders - May 30, 2013

Michael Irwin

Peter Saunders

The papers are full of a report (initially carried by the Daily Mirror) about the first British man with dementia to have an assisted suicide at the Dignitas suicide clinic in Zurich, Switzerland.

The BBC is now running the story giving it even wider coverage but it has also been reported by the: Telegraph,  Independent and Daily Mail. I have personally been asked to comment by the BBC, Mirror, Times(£) and Telegraph.

This story (on which I originally commented in March) is in the news because Michael Irwin, who heads up the campaign group SOARS (Society for Old Age Rational Suicide),  gave an exclusive interview to the Daily Mirror reporting that an 83 year old man with early dementia had killed himself at Dignitas seven weeks ago. The Mirror then splashed it on their front page. Now other news outlets are playing catch up in the usual feeding frenzy.

Irwin claims to have ‘helped’ the (unnamed) man in question by referring him to a London psychiatrist (currently also unnamed) who provided him with a medical certificate to say that he was mentally competent enough to make an informed decision about being helped to kill himself.

Irwin believes that assisted suicide should be available to elderly people on demand and seems determined to make himself a martyr for the pro-euthanasia cause by progressively pushing the legal boundaries so this case was very helpful to his cause.

According to the Daily Mirror he now claims to have helped at least 25 people to die at Dignitas.

In 2005 the General Medical Council found him guilty of serious professional misconduct and struck him off the medical register after he admitted supplying sleeping pills to help a friend die although you will seldom see this reported.

Ever since, ironically and curiously, he seems to have escaped prosecution by virtue of the fact that he is no longer a registered medical practitioner. This is in spite of the fact that encouraging or assisting a suicide remains a crime carrying up to a 14 year prison sentence under the Suicide Act 1961.

This is because the Director of Public Prosecutions has decided that he hasn’t yet fulfilled his prosecution criteria. The problem this has created is that Irwin will go on annexing the Sudetenland until he provokes a reaction from the DPP or police because he sees that any reaction will give even more publicity to his cause.

However there is now a new twist to the tale. In deliberately concealing the identity of the London psychiatrist who issued the certificate of mental capacity to this patient Irwin may well now be obstructing the course of justice.

The Director of Public Prosecutions makes it clear that doctors acting in a professional capacity to assist a suicide are likely to be prosecuted and the General Medical Council (GMC) has warned that such doctors risk censure, including being struck off the medical register (see details of DPP and GMC guidelines here). 

That would seem to place the unnamed psychiatrist at risk of both being prosecuted and also losing his licence to practice.

So at very least it would seem that this case should be fully investigated by the police and the GMC.

However on past form I would expect that Irwin will make it extremely difficult for them. He has cleverly, with the media’s full cooperation, created an unsolved mystery that will run and run and ensure that he himself stays in the media spotlight.

The reason for this is that Irwin is actually a campaigner who craves publicity. So he will talk to the media when it suits him but will also withhold incriminating information when it best suits his cause. 

He is playing ‘catch me if you can’.

I suspect he would quite like to be prosecuted to give his cause even more of the oxygen of publicity and will continue to push the envelope more and more until he elicits a response.

Those selling newspapers are of course only too happy to oblige but in the process they risk fuelling more anxiety and suicide contagion amongst the worried well.

What we learn from Irwin is that pro-euthanasia campaigners will always push the boundaries. This is because once you accept the argument that there is such a thing as a life not worth living it is not possible to draft a law to encompass all who would like to fall within its remit without eventually opening it up to everyone.

The minute assisted suicide is allowed for anyone at all others will come using the same arguments of  compassion and autonomy with allegedly equally deserving cases that fall just outside the existing legal boundaries. And they will claim that in the interests of equality they should have access to it too.

And so we see in any jurisdiction where euthanasia or assisted suicide has been legalised that incremental extension steadily takes place (eg Oregon, Belgium, Netherlands).

First there is a year by year increase in numbers and then, accompanying this, a widening of the categories of people to be included.

First we have mentally competent, adults with less than six months to live (as Dignity in Dying and Lord Falconer are pushing for here). Then there are those who are ‘suffering unbearably’ (in mind or body) but not terminally ill; then minors who are judged capable of making up their own minds; then the mentally incompetent who ‘would have wanted it’ had they been able to say.

Irwin wants assisted suicide to be available not just for those who have early dementia, but for any elderly people who feel that their time has come.

The problem is that one cannot grant the legal right to assisted suicide to any group without at the same time removing legal protection from other similar people.

If the law ever were to change in this country vulnerable people would feel constrained to end their lives for fear of being a burden upon loved ones. Or alternatively loved ones would feel constrained to help their determined elderly relatives.  

This pressure would be felt with real intensity at this time of economic recession when many families are struggling to make ends meet.

Given the number of people and organisations who stand to gain financially from the deaths of elderly people it would be a certain recipe for personal and institutional elder abuse.

People with dementia and their families need the best possible care and support, not campaigns for the removal of their legal protection.

Our current law provides the right balance. On the one hand the penalties it holds in reserve act as a powerful deterrent to exploitation and abuse. On the other hand it gives discretion to prosecutors and judges in dealing with hard cases. It does not need changing.

The odd thing about this whole drama is why this 83 year old man, given his obvious mental capability, did not simply take his own life without requiring assistance.

But then, had he done that, it would not have been an international news story and would not have helped Michael Irwin’s campaign.

Maine House overwhelmingly rejects assisted suicide bill

An article published in the Bangor Daily News in Maine reports on the overwhelming defeat of the assisted suicide bill in the Maine House. The article was written by Matthew Stone on May 31, 2013 and titled: Maine House says no to physician-assisted suicide law.

The article reported that:

House members voted 95-43 against the measure, which is sponsored by Rep. Joseph Brooks, an independent from Winterport. The bill next heads to the Senate. 

Brooks’ bill, LD 1065, would allow a patient and his or her doctor to sign companion end-of-life care agreements. Those agreements would be signed after the two have discussed the patient’s medical condition and treatment options and the patient has rejected life-extending treatments and agreed to accept “care that is ordered or delivered by the physician that may hasten or bring about the patient’s death.” 

The bill also would free doctors from criminal liability or the possibility of professional discipline for helping a consenting patient end his or her life. 

The vote followed an emotional debate on the House floor in which lawmakers described their experiences caring for parents and friends as their lives ended.Brooks said ill patients should be able to decide to end their lives when they can die in dignity. 

“Dignity was important to this mill laborer,” he said of his father. “Had he been aware that he was lying in a hospital bed in the living room of his home not in control of anything, he would have probably said, ‘Please help me with this.’” 

“How many of us have lost or seen others lose loved ones who linger painfully and unnecessarily for long periods?” asked Rep. Roberta Beavers, D-South Berwick. “We treat ill pets more humanely than we treat ill parents.” 

But in letting doctors administer lethal doses of medication, the assisted-suicide bill would go too far, said Rep. Ann Dorney, D-Norridgewock. End-of-life care has changed for the better in recent years, said Dorney, a physician. 

“We have very good end-of-life care. We have very good hospice care. We have very good palliative care,” she said. “I guess I’m not sure we need this bill.” 

Dorney also worried about the prospect of a guardian who makes medical decisions for a patient making the decision to end that patient’s life. 

Rep. Deborah Sanderson, R-Chelsea, said she wouldn’t want to rob a patient of a natural end to life. 

“I sat with my mom the last five days of her life. I slept in a wheelchair by her bed,” Sanderson said. “The night before my mother passed, my mother said, ‘It’s not like what I thought it would be.’ She said, ‘It’s peaceful.’ And I was very glad to hear that.” 

The Maine House’s rejection of the physician-assisted suicide legislation came more than a week after Vermont Gov. Peter Shumlin signed a similar measure into law in that state. Vermont’s law was the first in the nation to be approved through the legislative process. 

Physician-assisted suicide measures on the books in Oregon and Washington passed through public votes. 

In Maine, voters rejected a physician-assisted suicide ballot measure in 1990.

People in Maine with disabilities and those living with chronic conditions should be comforted by the fact that legislators in their state have decided to reject assisted suicide, an act threatens the lives of vulnerable citizens.

Book Review: Alzheimer’s disease, the soft target of the euthanasia debate.

Deakin University Australia - May 24, 2012

http://www.deakin.edu.au/news/2013/240413alzheimersandeuthanasia.php?

Megan-Jane Johnstone

The way Alzheimer’s disease is portrayed by advocacy groups and the media is having undue influence on the euthanasia debate, according to a Deakin University nursing ethics professor.

Deakin’s Professor Megan-Jane Johnstone has examined the ‘Alzheimerisation’ of the euthanasia debate in a new book - ‘Alzheimer’s disease, media representations and the politics of euthanasia: constructing risk and selling death in an aging society’ - based on her extensive research into the media representations of Alzheimer’s and the shift in public attitudes towards euthanasia.

“Alzheimer’s has been portrayed as the ‘disease of the century’ that is poised to have a near catastrophic impact on the world’s healthcare system as the population ages,” Professor Johnstone said. 

“This representation of the disease—along with other often used terms such as ‘living dead’, a ‘funeral that never ends’ and a ‘fate worse than death’—places Alzheimer’s as a soft target in the euthanasia debate because it plays to people’s fears of developing the disease and what it symbolises. It positions Alzheimer’s as something that requires a remedy; that remedy increasingly being pre-emptive and beneficent euthanasia.”

Professor Johnstone acknowledges that euthanasia is a polarising and emotive issue, however she warns that the public could be unduly swayed by the way the media, and pro-euthanasia groups, frame the issue as ‘simply a matter of choice’ and through the use of highly personalised, individual experiences.

“Euthanasia is far from a simple matter of choice, as choice itself is no simple matter; it is an extremely complex phenomenon. And Alzheimer’s disease cannot be adequately portrayed through highly publicised individual cases,” Professor Johnstone explained. 

“But this is the messaging coming through the media and influencing the public’s perception of Alzheimer’s disease and euthanasia, and calls into question the credibility of public opinion and opinion polls on which future public policy could be considered.”

Professor Johnstone’s book is not a treatise on the arguments for or against euthanasia and does not take a position either way.

“My hope is that the book will open people’s eyes to the ‘Alzheimerisation’ of the euthanasia debate and encourage them to critically evaluate the messages they are receiving from all sides of the debate,” Professor Johnstone said. 

“The proposal to allow euthanasia as a morally warranted option in the treatment of Alzheimer’s disease and other dementia’s is neither simple nor straightforward. 

“Anything less than an honest, transparent and accountable debate, which has been lacking to date, would be an assault on the integrity of all—both those for and against the euthanasia proposal—who are trying in their own ways to care for those who are confronting the hard-nosed reality of their inevitable mortality.”

Alzheimer’s disease, media representations and the politics of euthanasia: constructing risk and selling death in an aging society’ is published by Ashgate Publishing in Australia.

Professor Johnstone is Academic Chair in Nursing and Associate Head of School (Research) in the School of Nursing. She teaches at undergraduate and postgraduate levels and also supervises higher degree students. Professor Johnstone is an active researcher and scholar in the field of nursing and health care ethics. Her work has focused on a range of issues including: clinical risk management and patient safety ethics, health and human rights, cross-cultural health care ethics, health care disaster ethics, public health emergency ethics, moral policy development and end-of-life decision-making, dementia care ethics, and professional conduct in health care domains. She has published numerous journal articles and commentaries, and is the author of several books, including the internationally acclaimed Bioethics: a nursing perspective (now in its 5th revised edition) and the ICN commissioned work Ethics in nursing practice: a guide to ethical decision making (co-authored with Sara T. Fry USA, 2008). 

Gallup: Support for assisted suicide fluctuates based on the wording of the question.

Support for assisted suicide in America is at a low when the question includes the word "suicide"

By Alex Schadenberg, 
International Chair, Euthanasia Prevention Coalition.

A Gallup survey conducted (May 2 - 7, 2013) found that support for assisted suicide fluctuates by almost 20% based on the wording of the question.

The survey found that: 

51% of Americans support assisted suicide when the process is described as doctors helping a patient "commit suicide" while 70% of Americans supported assisted suicide when it was described as allowing doctors to "end the patient's life by some painless means."

The report from Gallup stated:

Gallup has asked both questions of U.S. adults aged 18 and older annually since 2001, as part of its Values and Beliefs survey. This year's update was based on interviews with 1,535 adults, and each question was asked of a separate half-sample.

Gallup reported that support for assisted suicide is down in recent years. The recent Gallup poll indicated that 45% of Americans were opposed to assisted suicide, which is the highest level since the poll question began in 1996. Gallup reported that:

... current support -- with 51% of Americans in favor and 45% opposed -- is similar to that of the previous three years, and is nearly identical to attitudes in 1996. In the interim, support steadily rose to 68% by 2001 and remained above 60% through 2004, after which it started to falter.

We learned from the recent defeat of the assisted suicide referendum in Massachusetts that once people learn more about assisted suicide, they become less likely to support it. 

Polling originally indicated that people in Massachusetts supported assisted suicide. After a good campaign informing Massachusetts voters of what assisted suicide is, it was defeated.

Several years ago I attended the World Federation of Right to Die Societies Conference. The euthanasia lobby knew from polling and focus groups that changing the language of the debate and message discipline would lead to more support for assisted suicide and euthanasia. 

The Gallup survey report concluded that:

A wording that refers to the patient's intention to end his or her life as "suicide," doesn't say family members are involved in the decision, and doesn't specify that the procedure will involve "painless means" produces lower support than the alternative wording. However, the resulting difference offers important insights into the complex nature of Americans' views on this question, as well as the negative connotation suicide has, generally. Underscoring this, the same poll finds just 16% of Americans saying suicide is morally acceptable. At the same time, the public is evenly split over whether "doctor-assisted suicide" is morally acceptable: 45% say it is, and 49% say it is not.

The Euthanasia Prevention Coalition has also learned that certain language is more effective. We agree with the Gallup poll that the use of the term assisted suicide or assisting a suicide is more effective than terms like: prescribed death, aid in dying or assisted dying.

Links to previous polling information.
- Do Americans want to legalize assisted suicide?
- Canadians want good end-of-life care not euthanasia or assisted suicide.
- More Americans believe that assisted suicide is morally wrong.
- Why the assisted suicide referendum was defeated in Massachusetts.

Hospital for Sick Children in Toronto dehydrating children with disabilities to death based on Quality of Life assessments

The following article represents a synthesis of the findings, with commentary by myself about the study: Parental Perceptions of Forgoing Artificial Nutrition and Hydration (FANH) During End-of-Life Care.

The first part of the article is a synthesis of the study, while the second part of the article is my commentary.

By Alex Schdenberg, International Chair of the Euthanasia Prevention Coalition.

A study entitled: Parental Perceptions of Forgoing Artificial Nutrition and Hydration (FANH) During End-of-Life Care was published in the Journal Pediatrics in its May 5, 2013 edition concerning the reactions of parents to the experience of withdrawing nutrition and hydration (FANH) from a child who was dying or experiencing a low quality of life at the Hospital for Sick Children in Toronto.

The study is based on independent interviews with parents after the child died.

The study sought input from twelve families of children who died after FANH. Three families were not interested in participating in the study and three families could not be reached. A total of eleven parents from six families participated in the study. One family had two children who died after FANH. Six children died after ANH was withdrawn, while one child died after ANH was withheld.

Two of the children died before the third month of life, two of the children died after the third month but before the sixth month of life and 3 children died at age 14 or 15.

Participation in the study was based on parents who were 18 years or older, who lived within 125 miles of the hospital and were fluent in English.

The study first defined the practice of FANH. 

ANH is defined by the Hospital for Sick Children as a life-sustaining treatment that is provided by naso gastric, or gastric tubes. ANH is provided when children cannot meet their dietary requirements or when it becomes unsafe to do so.

 The study states: 

“Although ANH may support biological existence and increase weight, there is no evidence that it improves survival or quality of life in dying children or adults. ANH carries significant risks and potential complications.”

The study states: 

“Providing ANH at the end of life (EOL) is a medical intervention that may be withheld or withdrawn depending on the balance of risk and benefits. Forgoing ANH (FANH) may be considered in the presence of neurologic devastation, irreversible total intestinal failure, and proximate death from any pathological cause. Although denying oral sustenance to children who want to eat or drink (and can do so safely) is ethically and legally wrong, when the potential or actual burdens are believed to outweigh the benefits the option to FANH either completely or by providing small amounts of “comfort feedings” insufficient to sustain life, may be a legitimate method of palliation.”

While many factors for FANH were considered the study found that the primary factor for FANH was the perceived poor quality of life QoL. Pain and suffering was a contributing factor in all but one child, the daughter of the family whose son had already died of the same condition, were motivated by a concern for her future suffering.

All of the parents stated that they found it helpful when professionals shared their past experiences with FANH as well as the evidence from adult medical literature. The parents needed reassurance and continued guidance after the FANH decision was made.

All parents felt that the quality of death was good. Some parents had worried about how death might unfold, and some were disturbed by their child’s changes in appearance as death approached: 

“we just saw him starting to waste away and that was the hard part.”

Some parents felt guilty about their decision and most found it emotionally difficult to watch their child die.

The parents generally believed that their child’s death was peaceful and comfortable. Many of the parents believed that their child’s comfort increased after FANH based on previous problems with feeding.

Some parents were not confident that their child’s comfort increased after FANH, but there was no indication that the child’s suffering increased. Parental doubts about quality of death may reflect their own suffering from watching their child die.

Study recommendations:

1. Physicians should take responsibility for introducing FANH to families who perceive their child to have a poor quality of life.
2. The focus of feeding should be comfort and not nourishment.
3. Physicians should assure parents that under certain EOL conditions, FANH is medically, legally and ethically acceptable and it is not a form of euthanasia.
4. Health care providers should share their knowledge and experience with parents.
5. Health care providers should assume that parents will worry about hunger, starvation and dehydration after FANH. Clinicians must emphasize that feelings of hunger and starvation do not usually occur and good oral hygiene will avoid problems with dehydration.
6. Parents will continue to doubt. Clinicians should guide and reassure the parents.
7. Parents should be offered opportunities to create a legacy.
8. Parents indicated that the multidisciplinary team needs to speak with one voice. The opinions of dissenting team members must be respected however they should not be shared with the family to avoid feelings of being judged.
9. Opportunities should be made for staff to voice their objection with the family being present. 

Conclusion:

FANH is considered a legitimate form of palliation at the end of life (EOL). This is the first study to use interviews to describe the perception of parents whose children died after FANH. FANH was largely determined by the perception of their child’s poor quality of life and related to negative effects of feeding. Parents must decide in FANH is right for their child and reassurance is required by a united medical team. Persistent doubts are common requiring ongoing support form the medical team after FANH.

------------------------------------------

Commentary by Alex Schadenberg:

The study Parental Perceptions of Forgoing Artificial Nutrition and Hydration (FANH) During End-of-Life Care does not help parents and health care providers decide when it is appropriate to withdraw or withhold ANH from a child or newborn. 

This study fails to make ethical distinctions between a FANH decision that allows natural death to occur because the child is actually dying and a FANH decision that causes death. 

The study acknowledges the difference between allowing natural death to occur and causing death when it states in the beginning:

"Providing ANH at the end of life (EOL) is a medical intervention that may be withheld or withdrawn depending on the balance of risks and benefits. Forgoing ANH (FANH) may be considered in the presence of neurologic devastation, irreversible total intestinal failure, and proximate death from any pathologic cause."

I can agree with most of the previous statement, but the findings in the study indicate that the Hospital for Sick Children have gone beyond these parameters and the recommendations from the study expands the parameters for FANH.

My concerns:

1. FANH is ethically the same as euthanasia when ANH is withheld or withdrawn from a person who is not otherwise dying, with the intention of causing death. Legally, FANH is not considered euthanasia, even when the decision intentionally denies the basic necessaries of life from a person who is not otherwise dying. 

2. People with disabilities experience significant discrimination and perceptions of cultural bias on a regular basis. Allowing physicians to introduce FANH to families will only perpetuate further discrimination to their existence.

3. FANH decisions should not be primarily based on Quality of Life (QoL). People with disabilities, who at times require ANH, have experienced a long history of discrimination. Perceptions of Cultural bias are often held by care-givers and families. A person with a disability may need to be protected rather than dying by FANH. 

4. The focus of feeding should be both comfort and nourishment. To deny a person with disabilities feeding for nourishment is the sign of systemic discrimination and cultural bias. 

5. It is normal for parents to doubt a FANH decision and re-assuring the parents, when it may be the wrong decision, creates social pressure rather than moral clarity. 

6. The multi-disciplinary team should not be encouraged to speak as one voice, if the FANH decision is wrong. It is not possible to protect vulnerable people when the system pressures dissenting voices to be silent.

Conclusion:

The study lacks objectivity:

1. It assumes that the FANH decisions that were made were ethically acceptable. The study ends up promoting FANH rather than providing guidelines for FANH. 

2. The study does not ask the question, why have three families refused to take part in the study? Was it because their experience with FANH was negative?

This study creates significant concerns related to the care of children with disabilities at the Hospital for Sick Children in Toronto. Negative perceptions of disability are highlighted by a willingness to dehydrate to death children with disabilities who may or may not be dying primarily based on Quality of Life.

Children with disabilities need to be provided a peer advocate (a person with a positive attitude towards disability) to protect their lives from medical care decisions that are not in the best interest of a person with a disability or that will result in their intentional death.

Links to previous articles:

* Canadian Paediatric Society approves the dehydration of infants who may not be otherwise dying.

* Haleigh Poutre video shown at Stepfathers trial.

* Elder abuse and death by dehydration: A personal story.