EPC demands in-depth investigation into murders at care homes in Canada.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Elizabeth Wettlauffer arrested.

Southwestern Ontario is shocked by the revelation of allegations that a nurse was responsible for 8 deaths in care homes in Woodstock and London Ontario.

As shocking as it is that Elizabeth Wettlaufer, 49, of Woodstock; has been charged with 8 counts of first degree murder in what is being defined as possibly the worst case of a seriel killer in Canadian history, we need to demand that an in-depth investigation be done into every care home in Canada, especially now that euthanasia and assisted suicide are now legal.

We should mourn the deaths of James Silcox (84), Maurice (Moe) Granat (84), Helen Matheson (95), Gladys Millard (87), Mary Zurawinski (96), Helen Young (90). Maureen Pickering (79) of Woodstock Ontario and Arpad Horvath (75) who was a resident at Meadow Park nursing home in London, but we must also recognize that these are a group of many deaths caused by people who falsely consider themselves angels of mercy in our medical system.

As Executive Director of the Euthanasia Prevention Coalition, I have received calls from people who are convinced that their loved may have been prematurely killed in a hospital or nursing home. These cases are very frustrating because it is nearly impossible to prove that such an act has occurred and the financial and personal costs associated with gaining justice is prohibitive.

Consider Joy Wawrzyniak who has been fighting for more than 6 years to gain some justice in the death of her father, Douglas DuGuerre. What about the case of Annie Farlow who died under suspicious circumstances at 80 days of age? Should we shrug off Annie's death because she was born with significant disabilities?

Cases of doctors or a nurse intentionally causing the death of a patient are not uncommon.

Several cases have been reported in the media in the past such as the death of David Gray, in which the doctor received a nine month suspended sentence for negligence causing death.

Several medical professionals who killed their patients, include: Dr. Harold Shipman, Charles Cullen, Dr Virginia Soares de Souza, Aino Nykopp-Koski and Dr. Michael Swango.

A recent NEJM study on the practice of euthanasia in the Flanders region of Belgium found that 1.7% of all deaths (more than 1000 deaths) were hastened without explicit request in 2013. As stated in the Euthanasia Deception documentary.

The Lancet study analyzing the Netherlands euthanasia experience found that there were 310 hastened deaths without explicit consent in 2010 in the Netherlands. 

The Euthanasia Deception documentary shared the story of Hendrik Reitsma who was robbed of 3 years of life with his Granddad in the Netherlands.

It is not safe to give doctors, or others, the right in law to cause death of their patients.

When a nation legalizes euthanasia, it gives medical professionals, who were already willing to kill their patients the legal right to proceed.

Unless every Canadian Province does an in-depth research study into the deaths at care institutions, we will never know how many intentional killings occur yearly in our country.

Children with Trisomy 13/18 are not incompatible with life.

Alex Schadenberg
International Chair - Euthanasia Prevention Coalition

For many years, children born with Trisomy 13 or 18 were labeled as having a lethal anomoly. The parents of children with Trisomy 13/18 were often refused medical treatment or urged to refuse treatment based on a belief that the child would die anyway.

In the past few years new research indicates that many children with Trisomy 13/18 can survive and some of them are doing well. This information has resulted in some parents wanting medical treatment for their children resulting in a few physicians becoming treatment experts for these children.

Dr. John D. Lantos wrote an article that was published in the Journal of the American Medical Association (JAMA) on July 26: Trisomy 13 and 18 - Treatment Decisions in a Stable Gray Zone.

In the article Lantos explains that 30 years ago pediatric residents were taught that trisomy 13/18 were lethal congenital anomalies. He wrote:

Parents were told that these conditions were incompatible with life. There was a tacit consensus that life-sustaining treatment was not medically indicated. Clinical experience usually was consistent with this self-fulfilling prophecy. 

Occasionally, though, some infants with these conditions did survive. The children were invariably institutionalized and described as severely impaired. These case reports were considered as the rare exceptions that proved the rule.

Lantos then explains that everything changed in the age of social media. 

In the age of social media, however, everything changed. Parents share stories and videos, showing their happy 4 and 5-year-old children with these conditions. Survival, it turns out, is not as rare as once thought. Children who were not institutionalized looked happy, cared for, and loved. It became increasingly awkward to describe these conditions as incompatible with life to parents who had ready access to information showing that it was not true.

The story of Bella, the daughter of Senator Rick Santorum, became a well known story about the survival of a child with Trisomy 13. 

May 2012, I wrote a story about Lilliana Dennis was a child with Trisomy 18. Lilliana is now 5 years old and continues to thrive.

Brandon Bosma who is 18-years-old speaks about living with Trisomy 18.

Link to an article based on families with Trisomy 13/18 children.

In his article, Dr Lantos then outlines the results of a new study by Dr Katherine Nelson titled: Survival and Surgical Interventions for Children with Trisomy 13 and 18 also published on July 26 in JAMA. Lantos states:

The study by Nelson and colleagues in this issue of JAMA describes survival and use of surgery in a large population-based cohort of children with trisomy 13 and 18 over a long period (21 years,until 2013) in Ontario, Canada. Of 174 children with trisomy 13, the median survival was 12.5 days; of 254 children with trisomy 18, median survival was 9 days. However, 12.9% of children with trisomy 13 and 9.8% with trisomy 18 survived to 10 years. Of children with trisomy 13, 23.6% underwent surgery with a 1-year survival after the first surgery of 70.7%, and of children with trisomy 18, 13.8% underwent surgery with a 1-year survival after the first surgery of 68.6%. The authors did not comment on how many deaths followed decisions to withhold or withdraw life-sustaining treatment. 

In the authors’ review of population-based studies, it appears that survival rates are increasing for infants with trisomy 13 and 18. Thirty years ago, no reports indicated that these infants survived until age 1 year. Over the next few decades, 1-year survival rates increased to 5% to 10%. In the study by Nelson and et al, 19.8% of infants with trisomy 13 and 12.6% of infants with trisomy 18 lived past their first birthday. As with the study by Nelson et al, no prior studies report the percentage of deaths that follow decisions to withhold life-sustaining treatment but, given the prevailing mindset, the number is probably high. Thus, reported rates of survival must be low estimates of the true possibility of survival. The increased survival over time is almost certainly a result of decisions to provide more treatment.

It is important to state that most Trisomy 13/18 children are still being denied medical treatment. There is no way to know how many of those children would have survived or thrived, like Brandon and Lilliana, had treatment been provided.

Dr Lantos offers insight into medical decisions based on "quality of life."

The concept of quality of life is too vague and subjective to be helpful as a criterion for deciding about the appropriateness of treatment. No one can know with certainty what any infant is thinking, feeling, or experiencing, but what is observed can be interpreted. Children with trisomy13 and 18 smile and laugh. They are not in pain. They give and receive love. These factors suggest that their subjective quality of life is not so poor that life-prolonging treatment should not be offered.

Dr Lantos concludes that parents should make the decision to provide or withhold treatment, but that accurate definitions needs to be established.

I personally thank Barbara Farlow for being an advocate for children with Trisomy 13/18. 

I believe that children with disabilities, who are not actually dying, should be given a chance to live. The human family have variable characteristics, abilities and disabilities. I consider all human beings as equally deserving of care and support otherwise society becomes locked into a philosophy that some lives are better off dead, which leads to ending of life decisions based on discrimination and fear.

"What Should We Do About Severely Impaired Babies".

A Reply to "What Should We Do About Severely Impaired Babies".

William Peace

By William Peace, May 11, 2014 (Published on his Bad Cripple blog).

In the Kingston Whig (May 9, 2014) I read an editorial by Udo Schuklenk who teaches bioethics at Queen’s University. Schuklenk’s, “What Should We do About Severely Impaired babies”? made me lose sleep last night. Link.

Utilitarianism has its its hooks into the health industrial complex, mainstream press, and contemporary popular culture. Access to health care is increasingly based on the lives we perceive as being worth living. This is a dangerous if not a deadly line of thought for vulnerable populations. I am one of those people whose life is not worth living in the estimation of many—paging Peter Singer at Princeton University and all those at the the University of Oxford Uehiro Centre for Practical Ethics. So whose life lacks value? Severely disabled infants, elderly people with Alzheimer’s Disease, those with a profound cognitive deficits, vent dependent quadriplegics, and many other costly and undesirable human beings. This makes me shudder. It is sobering and distressing to know my existence is unwanted. It is frightening to know some, highly educated others, think my life has no value and would like to end my suffering.

It does not take a great deal of insight to establish whose life is worth living. All those that are productive and contribute to society in a very narrow sense have value: bipedal people with typical cognition who are employed and supposedly fully autonomous. What utilitarianism fosters is a business model of life or bottom line approach that is essentially heartless, unimaginative, and draconian. Compassion in health care? Forget it. All hail modern medical science and expensive high tech diagnostic tools. Of course the proviso is only those we value have access high priced high profit medical technology. Worse, we can use that technology to prevent expensive, oops, I mean severely disabled infants from existing. Schuklenk celebrates prenatal testing.

Every year a small number of fetuses are carried to term who have no reasonable chance of living a life worth living. They are so severely impaired that they will live a miserable, short life until they eventually expire. The good news is that, courtesy of prenatal screening, only few such births take place and the numbers are decreasing. We have some data from the Netherlands, where a few hundred out of about 200,000 newborns annually tend to fall into this category.

What Schuklenk is celebrating is a new form Eugenics. In stating this I just lost my bioethicists and neonatology readership. When I use the E word bioethicists and neonatologist shut down. These heath care professionals believe my views are offensive and unbalanced. Surely I must be a religious fundamentalist whose faith and adherence to religious doctrine clouds my thought. Worse, some neonatologists will furiously and assert “I am not Nazi” when asked probing ethical questions. There is no effort to look beyond the narrow confines of the institution where they ply their trade. This enables a scholar such as Schuklenk to wonder:

Bill Peace: The assisted suicide push

The following article was written by Bill Peace, also known as "Bad Cripple" and published on his blog on December 24, 2013. Peace recently testified against the assisted suicide bill in Massachusetts.

Bill Peace

By Bill Peace

Those that seek to pass assisted suicide legislation into law are relentless. Nothing will disuade them from their goal. I have not observed this sort of commitment outside of religious or political fanaticism. I am not suggesting the people and organizations that advocate for assisted suicide are fanatics. Quite the contrary, most are good people with a strong opinion on an important topic. Most that advocate for assisted suicide are white, middle aged, and well educated. I will acknowledge they have good reason to be concerned about the way we die. To witness the bad death of a parent, spouse, sibling, child, or close friend is a horrific life changing experience. What advocates fail to grasp is people die badly for cultural reasons. Americans fear death and value autonomy above all else. I find it tiresome to hear people state that when I cannot control my bladder and bowels I want to die. I will not let another person wipe my ass, dress my body, and feed me. I would rather die than go to a nursing home. All of this undermines a narrow concept of autonomy.

I too bemoan the fact people die badly. However, assisted suicide legislation is not the answer. We simply do not need such laws. I have long wondered why people insist on pushing assisted suicide legislation when what is need is a national discussion about end of life in general. My recent experience in Boston testifying in opposition to H1998 helped me understand where proponents of such legislation have gone wrong: they have turned the debate surrounding the end of life into a public policy question.  At no point are the larger cultural implications of assisted suicide legislation considered. This reduces the debate to be about individuals rather than about the social forces that drive one to conclude their life has no value and death is preferable to life. To me, this is a socio-cultural tragedy not an individual failure or issue of choice. More to the point, lives are at stake. This was on full display symbolically in Boston. Proponents of assisted suicide wore blue stickers that read “My life. My Choice. My death”. This slogan is wrong. Simply put, no human being dies in a social vacuum. Death is never about an individual alone.

Book Review: After The Error: Speaking Out About Patient Safety to Save Lives

Book Review by Adrian Rhodes: 

After The Error: Speaking Out About Patient Safety to Save Lives

By Susan McIver, PhD., and Robin Wyndham.

ECW Press, Toronto, 2013, 254 pages, paperback and e-book, $19.95. 

Dewey reference [362.10971]

After the Error is a book that anyone interested in medical issues or issues around serious illness and medical provision in Canada should read. 

It is a collection of sixteen essays in the first part, and the second part has family and patient resources. 

There is a listing of online resources and further reading in an appendix.

Tim & Barb Farlow

The first essay is by Barbara Farlow whose daughter was born with Trisomy 13, a genetic condition. 

The essay tells of the family’s determination to help Annie live to the best of her life – and the resistance that the family got from the medical establishment.

One doctor repeatedly asked if the parents wanted ‘death with dignity’. The child died in suspicious circumstances and the family found out that a DNR was quietly placed on Annie without discussion.

The Lisa Shore case and its aftermath is detailed in this book in deep analysis. 

This book outlines how families are left to pick up the pieces on their own, but its overall tone is one of hope and a desire to improve service, not punish. The book shows how we can guard ourselves by careful documentation and provides a section in the second part on how to document what happened in the case of an error.

It is Canadian-focused, and this makes it particularly useful as a relevant resource, for learning how to cope with our medical system.

This book is not for everyone: there were parts I found hard to read, but if you want more resources for your family or yourself, this book is a good addition to your resource base.

Since we are having dialogues about medical provision and ‘euthanasia’ and ‘assisted suicide’, this book provides a real-world catalogue of why we should not legalize medically provided death.

I urge anyone with an interest in this subject to read this book.

Purchase After the Error from the Euthanasia Prevention Coalition for a donation of $20.

Barbara Farlow, a great example for everyone who cares about children with disabilities.

Barb & Annie Farlow.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

In the past few weeks I have written several articles about how medical professionals are treating (not treating) children who are born Trisomy 13/18.

Children born with Trisomy 13/18, conditions whereby the child has an extra 13 or 18 chromosome, are often considered "incompatible with life." When you learn about Trisomy 13/18 it becomes evident that the label "incompatible with life" is a death sentence because it leaves many parents without hope, when much hope exists.


Barb Farlow has done so much to co-ordinate information and encourage research studies concerning Trisomy 13/18. She got involved in these issues after the birth, and death of her daughter Annie.

Barb has turned a tragic story into positive outcomes for so many caring parents. This is Annie's story. Link to the story of Annie Farlow.


Three weeks ago, a research study was published in the Journal Pediatrics that found parents of children with Trisomy 13/18, considered the child to be happy and found that their lives were enriched by the child.

The research team in the study invited 503 parents of children with a Trisomy 13/18 child to participate in the study. 87% of the parents responded and 332 parents (67%) of 272 children completed the questionnaire.

The parents indicated that their physicians stated to them that:

* 87% their child was incompatible with life,
* 57% their child would live a life of suffering,
* 50% their child would be a vegetable,
* 23% their child would ruin their family.

On the positive side, 60% were told by their medical provider that their child would have a short, but meaningful life.

* 30% of the parents had requested a plan of treatment based on "full intervention."
* 79% of the children who received "full intervention" were alive at the time the questionnaire was sent. Those children were a median age of four years old.
* The survival rates for children with "full Trisomy" 13/18 was 40% lived for at least 1 year while 21% lived to at least age 5.

Half of the parents reported that caring for a child with a disability was harder than they thought it would be and yet 97% of the parents described their child as a happy child and most of the parents indicated that caring for their child had enriched their lives.

Link to the full blog article.

Link to more information about Annie Farlow.
Lilliana lives with Trisomy 18. She is not incompatible with life.

Hope for Lilliana - Lilliana lives with Trisomy 18. She is not "Incompatible with Life"

Lilliana on her first birthday.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

The most recent edition of the show Facing Life Head-On - entitled Hope for Lilliana, focuses on the life of Lilliana Dennis, a one-year old child with Trisomy 18 who is living a miraculous life.

Children with Trisomy 18 are often considered "Incompatible with Life" and therefore denied medical treatment. Parents are usually discouraged from treating children with Trisomy 18 and most of these children do not live beyond their first year of life.

Lilliana is proving that Trisomy 18 is not a death sentence, and with the proper care children with Trisomy 13/18 can thrive and live a happy life. Link to the program.

A recent study published in the current edition of the Journal Paediatrics questioned parents who have children with Trisomy 13/18. The study confirmed that the parents of children with Trisomy 13/18 considered their child to be happy and found that their lives were enriched by their child.

Link to a recent article about the Journal Paediatrics study.

The research team invited 503 parents of children who had a Trisomy 13/18 child to participate in the study. 87% of the parents responded and 332 parents (67%) of 272 children completed the questionnaire.

The parents indicated that their physicians stated to them that:

* 87% their child was incompatible with life,
* 57% their child would live a life of suffering,
* 50% their child would be a vegetable,
* 23% their child would ruin their family.

On the positive side, 60% were told by their medical provider that their child would have a short, but meaningful life.

Barbara Farlow with daughter Annie.

* 30% of the parents had requested a plan of treatment based on "full intervention."
* 79% of the children who received "full intervention" were alive at the time the questionnaire was sent. Those children were a median age of four years old.
* The survival rates for children with "full Trisomy" 13/18 was 40% lived for at least 1 year while 21% lived to at least age 5.

Half of the parents reported that caring for a child with a disability was harder than they thought it would be and yet 97% of the parents described their child as a happy child and most of the parents indicated that caring for their child had enriched their lives.

Last May, I came across the story of Lilliana Dennis. Lilliana Dennis is proving that Trisomy 13/18 is not a death sentence.  

Link to my first article about Lilliana Dennis.

Link to the Facing Life Head-On episode - Hope for Lilliana.

Link to a recent article about the Journal Paediatrics study.

Families of children with significant disabilities indicate that their lives are enriched.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

A research study that was published in the current edition of the Journal Pediatrics found that parents of children with Trisomy 13/18, conditions whereby the child has an extra 13 or 18 chromosome, indicated that the parents considered the child to be happy and found that their lives were enriched by the child.

The findings are very different than that attitude of many pediatricians towards these conditions. The Canadian Press reported:

Medical textbooks are grim and bleak about babies born with genetic codes considered "incompatible with life." But the study says parents who have these children speak of the joy found in what is almost inevitably a short lifespan. These children, they say, can enrich a family rather than destroy it.

Lilliana Dennis - First birthday

Recently I came across the story of Lilliana Dennis, a child who is living with Trisomy 18. After reading the heartfelt story about Lilliana and the Dennis family I responded by writing an article titled: Trisomy 18 is not a death sentence.

The research study was carried out by Dr. Annie Janvier - specialist in Pediatrics and Ethics at the University of Montreal and Sainte Justine Hospital in Montreal, Barbara Farlow B Eng MBA - patient safety Canada, and Dr. Benjamin Wilfond - Center for Pediatric Bioethics, Seattle Children’s Research Institute and Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington.

The research team invited 503 parents of children who had a Trisomy 13/18 child to participate in the study. 87% of the parents responded and 332 parents (67%) of 272 children completed the questionnaire.

The parents indicated that their physicians stated to them that:

* 87% their child was incompatible with life,
* 57% their child would live a life of suffering,
* 50% their child would be a vegetable,
* 23% their child would ruin their family.

On the positive side, 60% were told by their medical provider that their child would have a short, but meaningful life.

* 30% of the parents had requested a plan of treatment based on "full intervention."
* 79% of the children who received "full intervention" were alive at the time the questionnaire was sent. Those children were a median age of four years old.
* The survival rates for children with "full Trisomy" 13/18 was 40% lived for at least 1 year while 21% lived to at least age 5.

Half of the parents reported that caring for a child with a disability was harder than they thought it would be and yet 97% of the parents described their child as a happy child and most of the parents indicated that caring for their child had enriched their lives.

Barbara & Annie Farlow

The article in the Canadian Press interviewed Barbara Farlow, one of the authors of the study. Farlow, the mother of a child who had Trisomy 13 stated:

"We didn't want our daughter to live on life support or to suffer. But if she had a chance to live comfortably and be happy . . . then we were willing and able to care for her, despite her limitations,"

Annie lived for 80 days. When an illness brought her back into hospital and she stopped breathing, the staff was slow to try to resuscitate her, despite her parents' wishes. Later, Farlow and her husband discovered Annie's medical file had a DNR — do not resuscitate — order on it, even though they hadn't authorized it.

Dr Annie Janvier stated to the Canadian Press that:

"What we predicted as doctors happening to all these families didn't happen," says Janvier, who admits the findings are receiving a lukewarm response in some quarters.

"I just want to show that these kids mean something to their parents, ... And they seem like they have a quality of life that's acceptable. Doctors are not torturing them. We're not giving them undue pain. And they should be treated as unique children."

Dr. Benjamin Wilfond, the lead research author in the study, told Reuters news that:

"There is a broader range of survival and experiences than providers know. The parents may be getting this information online and clinicians may need to rethink what they say to parents,"
"I think the point of our paper is to say these are quite serious conditions, but saying it's hopeless is inconsistent with reality."

I have known Barb Farlow and her family for several years. I have learned, through Barb, much about the lives of children with Trisomy conditions. It is my hope that society will break-through the negative bias towards children with profound disabilities, such as Trisomy 13/18. Everyone is a unique human being and people with disabilities offer other people the opportunity to accept and understand the true meaning of dignity. Hopefully this study will create new opportunities for families and the children with disabilities.

More information can be found at: http://www.trisomy.org/

Who decides when you die?

By Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Joy Wawryzniak

The case of Joy Wawrzyniak who is sueing the Sunnybrook hospital based on the death of her father Douglas DeGuerre’s. DeGuerre had legally assigned his daughter, Joy Wawrzyniak, as his Substitute Decision Maker (SDM) and his Power of Attorney for personal care document stated he wanted full code medical treatment.

On September 4, the Toronto Star published the article on the Wawrzyniak case.

Link to my comments on this case: http://alexschadenberg.blogspot.com/2010/09/lawsuit-could-set-precedent-about-end.html

Over the past few days there have been a significant number of letters printed in the Toronto Star about this issue. You need to know that the paper picks and chooses the letters it publishes, therefore the letters that were published represent a cross-section of the letters that were received.

Here is a cross-section of the comments that have been published in the Toronto Star:

Dr. Bernard Dickens says, “If the patient’s life cannot be saved in a meaningful way and if intervention would deny resources that would benefit other patients . . . then the doctor is justified in clinical judgment to withhold treatment.”

This seems to be the policy prevailing in Canadian hospitals, making elderly patients fearful of being hospitalized because tests and treatments will be considered in the context of their cost effectiveness and age appropriateness.

Ageism doesn’t appear to matter in the medical field, and a tragic proof was Douglas DeGuerre’s dying plight trying to breathe, with no doctors willing to help him.

I wish Joy Wawrzyniak success in her litigation. It may be too late for her father, but it could help save countless lives. 

Jaime Oksemberg, Toronto

“Physicians are not obligated to provide treatment that will almost certainly be of benefit to the patient” (2006 CPSO End of Life Policy).

What is a benefit and who defines it? The ambiguity of this definition allows doctors to use their clinical judgment along with their own value judgment to determine whether a patient is worthy of treatment. Every vulnerable patient is at risk.

Barbara Farlow, Mississauga

My blood boiled as I read this article. In December 2009 my elderly mother was admitted to Sunnybrook Hospital. My mother also had a strong will to live. It was very clear from the start that the attending physician had “written her off” due to her age and co-morbidities and had no interest in optimizing her medical condition.

It was only due to a combination of both physician family members and other persistent family members who screamed and begged for treatment that the attending physician and his team begrudgingly gave it (by then, in an untimely manner).

The experience has haunted our family and left deep, lasting scars. It is frightening that his approach is being taught to residents and medical students on his team who follow him at this renowned teaching hospital.

Decisions about the extent of medical care need to be discussed with the patient and the family, and decisions to not provide active medical treatment cannot be a unilateral physician decision. Otherwise, this bodes extreme danger for the future medical care of our aging population.

Carolyn Telner, Toronto

Your article about Ms Wawrzyniak’s horrifying experience in Sunnybrook conjured up the demons of the past in me. A mere 65 years ago, doctors in my home country decided whose life is not worth living and who should not raise children. Doctors, assisted by nurses and social workers, “euthanized” and sterilized tens of thousands of people they, with their professional expertise, deemed too ill to live, too disabled to raise children or in general too much of a burden for society. ...

...Doctors may make suggestions — even recommendations — but certainly not decisions. This is entirely up to the patient. Or would you like to have your hairdresser decide what haircut is right for you, or let your real estate agent buy a house he finds appropriate for you?

The idea that doctors decide who is worthy of their help and who isn’t would make hospitals a scary place. Better not contradict your doctor or you might regret it later?

And think about the influence of economic circumstances in this equation. Better switch off that senior over there so we can use our resources more economically?

We must fight this at the beginning so this inhumanity can never again get a hold in our societies. If Ms Wawrzyniak needs support for her legal fight, I would gladly donate. And hope these arrogant doctors get a well-deserved slap on their hands.

Tom Wiedemann, Toronto

In 1996 the Ontario legislature passed the Health Care Consent Act, which clearly sets out that the wishes of a person are to be followed by health professionals, and that substitute decision makers are obliged to follow those wishes as well.

The legislation provides a mechanism for physicians to challenge a person’s decision to determine if it is appropriate. The legislation does not envisage physicians making unilateral decisions. The Consent and Capacity Board of Ontario was entrusted with the duty to adjudicate these issues and it has done so for the past 16 years, including many end-of-life issues.

People in this situation should know their rights and physicians should be more aware of the mechanisms in place to deal with these complex and emotional issues.

Theodore Nemetz, Barrister and Solicitor, Former lawyer member and past chair, Consent and Capacity Board

Considering the recent case of Joshua Kulendran Mayandy who was denied fluids and nutrition, even though he was not otherwise dying, and the hospital and the lawyers pressured the potential SDM was accepted only because he succumbed to the demand that no IV fluids, nutrition and medicine be provided to Joshua.

My biggest questions are related to definitions and false legal precedents. Since when was it in the "best interests" of the patient to deny them any medical treatment, including fluids, hydration and or oxygen, when they are not otherwise dying?

Link to the comments: http://www.thestar.com/opinion/letters/article/858858--decisions-about-dying

How Annie's short life inspired her mother's mission

This is a reprint of a great article about Barbara & Annie Farlow from the Toronto Star. Barbara Farlow was a speaker at the First International Symposium on Euthanasia and Assisted Suicide in Toronto - Dec 1, 2007.

How Annie's short life inspired her mother's mission

By Helen Henderson, Toronto Star - August 30, 2008 Link to article

Barb & Annie Farlow

Barbara and Tim Farlow's daughter Annie was just short of three months old when she died three years ago.

Annie had a chromosome disorder that would have affected her development. Her family, including two brothers and two sisters, knew all about it long before she was born.

They knew she might not live into her teens, talked about the inevitable challenges and sacrifices and welcomed her into their lives.

So when Annie died of what her parents believe might have been a treatable respiratory condition, they started asking questions. Now, Barbara Farlow is front and centre in an international crusade.

Do some doctors play God with disabled kids?

Are treatable but possibly fatal problems, such as digestive obstructions or respiratory difficulties, sometimes left to take their course when a child has a condition like cerebral palsy or Down syndrome or, in Annie's case, Trisomy 13? Do some medical professionals mask their own quality-of-life opinions by giving parents only the worst-case scenario, leading to what Farlow calls "misinformed consent"? What can families do to change things?

But as she raises these questions in international forums, Farlow never names the hospital – because, she says: 

"This could happen anywhere."

The Farlows have many concerns about how Annie's respiratory condition was regarded from birth. They were with her when breathing problems sent her into the critical care unit just over two months later. After she died, they found themselves without answers.

Among other things, the family questions what drugs were used and how a "Do not resuscitate" order was issued without their informed consent.

The hospital has written to the Farlows acknowledging it "could have improved upon" communication between the family and the staff who cared for Annie and that "we could have done better in terms of providing end of life care."

But it also says: 

"The best time to sort out these issues is before ... one is trying to make the appropriate decision in the middle of a medical crisis."

The family's appeals for a coroner's inquest have been denied.

In her crusade for change, Farlow has been across North America and Europe, from the University of Toronto to the World Health Organization and the United Nations High Commissioner on Human Rights. She has talked to hospital associations, medical schools and advocacy groups about Annie and the need for doctors to listen to the wishes of patients and their families.

Hospital and government policies emphasize heeding patients, she says. But when push comes to shove, it's the bottom line that governs. Overburdened and underfunded health-care systems lead to clinical priority-setting, Farlow says. "One choice comes with a higher price ticket." Under those rules, disabled people lose in the court of public opinion.

As a member of the Canadian Patient Safety Institute and Patients for Patient Safety Canada, part of the World Health Organization's Alliance for Patient Safety, Farlow says she wants to bring more accountability and respect for life to the system. This is not about advocating prolonging life at any cost, she emphasizes. It's about patient-centred care in which the family is included in an informed decision-making process.

Some families may feel comfortable knowing they will be giving birth to a child with disabilities; others may not, she says. Either way, their wishes should be respected through a process that is transparent and accountable.

Meanwhile, she takes pride in the fact that Annie has been nominated as an unsung hero to be honoured this fall by Community Living Ontario "because she fundamentally affirms the value of every human person and that everyone deserves whatever care and support is needed to live, flourish and contribute to the happiness of their family and community."

Reach Barbara Farlow and Patients for Patient Safety Canada at: b_farlow@hotmail.com.

Helen Henderson is a freelance writer and disability studies student at Ryerson University. Her column appears Saturdays. helenhenderson@sympatico.ca

Parents need to be prepared

How can families help disabled children in the hospital? Barbara Farlow recommends the following:

• Develop a plan beforehand in writing, detailing how you love your child and want her to live but don't want her to suffer.
• Be very explicit.
• When speaking with doctors, be very clear. Say: "This is what we understand you to be doing. Is this correct?"