Court of Appeal in Britain upholds lower court ruling, protecting UK citizens from euthanasia.

Alex Schadenberg

By Alex Schadenberg, 

International Chair - Euthanasia Prevention Coalition

The Court of Appeals in Britain released its decision today in the Nicklinson/Lamb euthanasia case by upholding the decision of the lower court by rejecting the argument that an exception to homicide can be created to allow euthanasia based on a defense of necessity. The Court of Appeal also upheld that only parliament can change laws prohibiting euthanasia and assisted suicide.

Mr Lamb was seeking a court declaration that any doctor who helped him to die would have a defence against a charge of murder. The defence is known as "necessity", meaning it was necessary for the doctor to act to stop his suffering.

There has been confusion concerning the Nicklinson/Lamb case which was asking the court to legalize euthanasia and assisted suicide. To legalize euthanasia, the court would have had to create an exception to the homicide (murder) Act in the UK.

A third plaintiff in the case, known only as Martin, appears to have won his intervention by being granted the right to have greater clarification in the prosecution guidelines with respect to assisted suicide.

Lord Judge

Keir Starmer, the director of public prosecutions stated that he would appeal the Martin decision to the Supreme Court.

Lord Judge, as Lord Chief Justice, said: 

"the law relating to assisting suicide cannot be changed by judicial decision". 

"whatever the personal views of any individual judge on these delicate and sensitive subjects - and I suspect that the personal views of individual judges would be as contradictory as those held by any other group of people - the constitutional imperative is that, however subtle and impressive the arguments to the contrary may be, we cannot effect the changes or disapply the present statutory provisions, not because we are abdicating our responsibility, but precisely because we are fulfilling our proper constitutional role".

Dr Andrew Fergusson of the Care Not Killing Alliance in the UK, a group that intervened in the case, stated:

The judgment comprehensively and completely dismissed these appeals, which sought to alter legislation covering murder. 

"All three judges strongly rejected the notion that 'necessity' should be a defence in euthanasia cases, saying this was not compatible with English Law. Further, the blanket prohibition on assisted suicide in the UK is not contrary to Article 8 of the European Convention on Human Rights."

"The judges, the Lord Chief Justice, Lord Judge, the Master of the Rolls, Lord Dyson and Lord Justice Elias, recognised that changing the laws on murder and suicide are matters for Parliament alone. They acknowledged that these issues had been debated by Parliament frequently in recent years."

"And they confirmed the simple truth that the current law exists to protect the vulnerable and those without a voice: disabled people, terminally ill people and elderly people, who might otherwise feel pressured into ending their lives."

Dr Andrew Fergusson

Dr Fergusson continued: 

"Two of the three judges concluded that the DPP should issue some very minor clarification to the prosecution guidelines covering assisted suicide for 'class two cases' requiring the involvement of a health professional. We were persuaded by the dissenting opinion from the UK's most senior judge that change was unnecessary and unhelpful, but, importantly, this clarification does not change the current law."

"These latest court cases, along with previous cases and the numerous debates in Parliament confirm that there is a limit to choice in a democratic and tolerant society. The judges acknowledged these are three tragic cases but agreed with our view that it is not acceptable to expect the state to sanction and condone murder."

"I hope this latest decision will now draw a line once and for all under the legal debate and allow politicians, society as a whole, and health professionals to focus attention on how we care for the terminally ill, disabled and elderly."

Richard Hawkes

Richard Hawkes, chief executive of Scope, a charity for persons with disabilities stated:

"Why is it that when a able-bodied person wants to commit suicide we try to talk them out of it and offer them support, but when a disabled person wants to commit suicide we focus on how we can make that possible?"

The Court of Appeals decision in the UK is a good decision. 
It upheld the rule of law and it maintains the protections in law for every citizen in the UK, especially people who live with disabilities, chronic conditions, depression or mental illness.

Link to:
- Care Not Killing Alliance welcomes Court of Appeal rulings. 
- UK court rejects euthanasia cases, court gets it right.

CNK welcomes the Appeal Court rulings on the Nicklinson and Lamb cases but favours the dissenting opinion on 'Martin'

Media Release - July 30, 2013

Care Not Killing Alliance

Senior judges 'comprehensively and completely' reject challenge to murder law

Care Not Killing (CNK), the UK's leading anti-euthanasia campaign group, has welcomed today's decision by all three judges in the Appeal Court to comprehensively and completely reject the Nicklinson and Lamb cases.

However, it expressed concern about the 2-1 decision in the Martin case to seek further clarification of the DPP guidelines for so-called 'class two' cases relating to assisted suicide, requiring the involvement of a health professional.

Dr Andrew Fergusson

Dr Andrew Fergusson, a spokesman for CNK, said: 

"We welcome today's ruling by the Appeal Court on the Tony Nicklinson and Paul Lamb cases, in which CNK intervened. The judgment comprehensively and completely dismissed these appeals, which sought to alter legislation covering murder." 

"All three judges strongly rejected the notion that 'necessity' should be a defence in euthanasia cases, saying this was not compatible with English Law. Further, the blanket prohibition on assisted suicide in the UK is not contrary to Article 8 of the European Convention on Human Rights." 

"The judges, the Lord Chief Justice, Lord Judge, the Master of the Rolls, Lord Dyson and Lord Justice Elias, recognised that changing the laws on murder and suicide are matters for Parliament alone. They acknowledged that these issues had been debated by Parliament frequently in recent years." 

"And they confirmed the simple truth that the current law exists to protect the vulnerable and those without a voice: disabled people, terminally ill people and elderly people, who might otherwise feel pressured into ending their lives."

Dr Fergusson continued: 

"Two of the three judges concluded that the DPP should issue some very minor clarification to the prosecution guidelines covering assisted suicide for 'class two cases' requiring the involvement of a health professional. We were persuaded by the dissenting opinion from the UK's most senior judge that change was unnecessary and unhelpful, but, importantly, this clarification does not change the current law. 

"These latest court cases, along with previous cases and the numerous debates in Parliament confirm that there is a limit to choice in a democratic and tolerant society. The judges acknowledged these are three tragic cases but agreed with our view that it is not acceptable to expect the state to sanction and condone murder. 

"I hope this latest decision will now draw a line once and for all under the legal debate and allow politicians, society as a whole, and health professionals to focus attention on how we care for the terminally ill, disabled and elderly."

Man charged with assisted suicide in Hamilton Ontario

Several days ago, a man was charged with the crime of assisted suicide in Hamilton Ontario.

Hamilton Ontario

The Hamilton Spectator reported that Herbert Dilts was charged by Hamilton police for the alleged crime of assisted suicide in the death of Brian Nelson (71) of Stoney Creek Ontario who died in February 2012.

Nelson, who was a friend of Dilts, had unsuccessful back surgery for a degenerative disk several years before. Nelson asked Dilts to assist him to commit suicide. Dilts acknowledges that he discussed the suicide plan with Nelson, but claims that he had nothing to do with the death.

The story that was written by Teri Pecoskie and published in the Hamilton Spectator on July 26, stated that:

Dilts knows Nelson couldn't have killed himself without help — not with his ailing back. However, he denies playing any role in his friend's hanging, a cause of death officials won't confirm. 

Dilts says he wasn't the only person Nelson talked to, which is something his lawyer Michael O'Brien backs up.  

"Brian Nelson had been making a lot of people aware that he wanted to commit suicide," he says. "It was pretty well-known."  

According to Dilts, Nelson threatened to kill himself several times, but didn't attempt to follow through until that warm day two winters ago.

Hamilton General Hospital

According to the Hamilton Spectator story, a preliminary hearing has already taken place and there is a publication ban on the specific information related to the case. We do know that Nelson was found dead in the parking garage at Hamilton General Hospital.

Due to the publication ban, the Euthanasia Prevention Coalition does not have enough information to comment on the case. 

Section 241 of the Criminal Code states that anyone who:
(a) counsels a person to commit suicide, or
(b) aids or abets a person to commit suicide,
whether suicide ensues or not, is guilty of an indictable offence and liable to imprisonment for a term not exceeding 14 years.

Doing Death in Dubbo Australia

The following is the response by Paul Russell, the founder and leader of HOPE Australia, to the article that appeared in the The Dubbo Weekender online. 

Though a number of local people's views were included in the article the first section presented uncritically the views of some in the pro-euthanasia lobby in NSW. (Dubbo is about 300 km North-West of Sydney in New South Wales).

I submitted the following article to the editor to hopefully give the people of Dubbo a chance to evaluate an opposing view.

Doing Death in Dubbo

Paul Russell

By Paul Russell, July 30, 2013

It is often said that if something seems too good to be true – it probably is.

Such are the claims on the pro-euthanasia lobby as explained in your article: A good death? The voluntary euthanasia debate (Jen Cowley 27^th July).

Consider: if this were such a good idea and if euthanasia laws could be made safe from abuse and vulnerable people protected, why hasn’t every parliament in Australia already done so?

Yet Australian parliaments, over the last decade or so have failed to pass something like 20 euthanasia bills. This fact cannot simply be written off as a religious lobby standing against a rational idea no more than it can be dismissed as a result of out-of-touch parliamentarians ignoring public sentiment.

Contrary to what the euthanasia lobby would have us believe, there are very real concerns about the public safety of euthanasia and assisted suicide laws. Evidence from places that have already gone down this path show significant problems with monitoring, compliance, containment and adherence to the law. It is these concerns that weigh heavily on our legislators – and rightly so.

Dr Edelman is correct when she observes that ‘autonomy and control over our lives is very important, as individuals – particularly at the end of life when we feel very vulnerable.’ Choice is a very important factor and informed choice about the kind of care and interventions that each of us wants and does not want is an essential part of exercising our choice. But choice, in terms of euthanasia, is an illusion simply because the choice would never be our own. The choice would always belong to the doctor who, in choosing to kill, would be endorsing the idea that our lives were not worth living.

Moreover, attempts to enshrine safeguards in euthanasia law are, in effect, little more than window dressing: giving us all a false sense that somehow killing people is okay – so long as it’s within stated limits. No stated limits are ever truly safe.

Consider the growing problem of elder abuse in Australia where elderly Australians are being ripped off and coerced and abused in all sorts of ways – very often for the financial gain of a relative or carer. Euthanasia laws would be a recipe for the ultimate in Elder Abuse that no so-called safeguard against coercion can ever guarantee against.

I mentioned earlier the paramount importance of informed consent. If, in the debate on any euthanasia bill we were told that there was a distinct likelihood that a percentage of euthanasia deaths would occur without any evidence that the patient requested their own death or consented to it, I think we would all raise an eyebrow or two.

Yet this is precisely what is occurring in the Netherlands and Belgium. A 2010 study published in the Canadian Medical Association Journal reported that in 32% of euthanasia cases in the Flanders region of Belgium there was no evidence of request or consent. Choice is clearly absent. Using the same data the British Medical Journal also noted that 47.2% of euthanasia cases were not even reported. When the Belgian law provides an effective immunity to doctors who ‘do the paperwork’ it’s legitimate to wonder what’s really going on there.

The Belgians are currently debating extending the provisions of their law to include newborns with disabilities and people with early onset dementia (whose ability to choose may be diminished). The Dutch already allow this and more.

To learn about the abuse of the euthanasia laws in Belgium and the Netherlands, order the book: Exposing Vulnerable People to Euthanasia and Assisted Suicide.

Little wonder that the British House of Lords 1994 inquiry warned that: 

"to create an exception to the general prohibition of intentional killing would inevitably open the way to its further erosion whether by design, by inadvertence, or by the human tendency to test the limits of any regulation."

And, contrary to the earlier assertions (In the Weekender article), the AMA does have a position on euthanasia: 

“The AMA believes that medical practitioners should not be involved in interventions that have as their primary intention the ending of a person's life.”

These matters cannot simply be blithely dismissed. Just as there’s a commitment to informed consent within the medical community, we should also commit ourselves and the debate in the public square on this issue, to the same sort of scrutiny. After all, few other issues in social policy are so clearly matters of ‘life and death’.

The World Medical Association Opposes Euthanasia.

The following article was written by Wesley Smith and published on July 29 on his blog under the title: World Medical Association Opposes Euthanasia.

Wesley Smith

By Wesley Smith

The world’s professional medical associations overwhelmingly oppose euthanasia and assisted suicide. The World Medical Association reiterated its strong such commitment to the ethical practice medicine this year. From the WMO Resolution on Euthanasia:

Euthanasia, that is the act of deliberately ending the life of a patient, even at the patient’s own request or at the request of close relatives, is unethical. This does not prevent the physician from respecting the desire of a patient to allow the natural process of death to follow its course in the terminal phase of sickness.

The WMO similarly opposes assisted suicide.

Physicians-assisted suicide, like euthanasia, is unethical and must be condemned by the medical profession. Where the assistance of the physician is intentionally and deliberately directed at enabling an individual to end his or her own life, the physician acts unethically. However the right to decline medical treatment is a basic right of the patient and the physician does not act unethically even if respecting such a wish results in the death of the patient.

The next time suicide pushing organizations such as Compassion and Choices pretend that the medical world is in their camp because some small organization supports legalization, show them the WMA statement. And the AMA’s:

Euthanasia is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.

And on and on it goes.

Swiss assisted suicide leader says that there is almost no difference between euthanasia and assisted suicide.

Paul Russell

An article published today in Australia's Canberra Times concerns a three week fact finding mission conducted by Federal Labor MLA, Mary Porter, who visited the Netherlands, Belgium and Switzerland concerning the practice of euthanasia and assisted suicide in those countries. The article is written by Megan Doherty and titled: Euthanasia: Time to talk.

Paul Russell, the leader of HOPE Australia, has been very effective at explaining to Australians why euthanasia and assisted suicide are not safe.

The article explains that Porter visited countries where euthanasia and/or assisted suicide are legal in order to speak with the groups and individuals who support and oppose its legalization.

While visiting Switzerland, Porter spoke with Bernhard Sutter, the Vice President of Exit Switzerland. Sutter explained that the difference between euthanasia and assisted suicide is: 

"merely the administration"

Sutter explained:

''Let's say it's administered by intravenous drip: if the doctor opens the switch allowing the lethal medication to flow, it is 'active euthanasia', if the patient opens the switch, it is 'assisted suicide.'"

The article states that the Australian government will not legalize euthanasia:

Opposition health and ageing spokesman Peter Dutton says the Coalition ''does not propose any changes'', while a spokesperson for Attorney-General Mark Dreyfus says ''the government is not planning to introduce legislation dealing with voluntary euthanasia into the Parliament''. 

Porter says the ACT Government is also not planning any measures to circumvent the Andrews law. She maintains she is simply responding to a concern she recognised among in the community, including from lobby groups such as Dying with Dignity.

Porter states in the article that she favoured legalizing euthanasia before going to Europe but she now thinks that the issue is more complex. The article states:

''after going and listening to everybody, I realise that it is much more complex than I thought it was. ... 'What about the mentally ill? Should they be allowed to be euthanased? What about people with disabilities? What about children?'''

Dr Benoit Beuselinck

The article explains that Porter met with people who oppose euthanasia, such as Dr Benoit Beuselinck, who is an oncologist in Belgium. The article states:

''For me and several of my colleagues, the euthanasia law has been bad for Belgium: the patients are finding less humanity, the doctors have more difficulties in their daily work and finally, I think the image of our country is suffering,'' he says. 

Beuselinck, who met Porter, says more focus should be on patients being able to manage their disease or condition through palliative care. He also says the euthanasia laws are threatening the patient-doctor relationship. 

''In my practice it occurred that some family members thought we were euthanasing a patient without her demand. Another patient refused to go to a hospice, because he thought that palliative care would automatically mean euthanasia. A colleague even received a false demand for euthanasia, written by a son on behalf of his father,'' he says.

Legislators should deeply question the idea of legalizing euthanasia, especially when considering the abuse of the euthanasia law in Belgium, where euthanasia has been legal for 10 years.

For instance, recent studies concerning the Belgian euthanasia law found that: 32% of the assisted deaths are done without request and 47% of the assisted deaths go unreported in the Flanders region of Belgium. Another recent study found that even though nurses are prohibited by law from doing euthanasia, that in fact nurses are euthanizing their patients in Belgium. There has never been an attempted prosecution for abuses of the Belgian euthanasia law.

The book, Exposing Vulnerable People to Euthanasia and Assisted Suicide uncovers data proving that unreported euthanasia deaths and the abuse of the euthanasia laws in jurisdictions, such as Belgium and the Netherlands, where it is legal, uncovers euthanasia deaths without request not only occur but represent a threat to vulnerable patient groups.  

Order the book: Exposing Vulnerable People to Euthanasia and Assisted Suicide.

Links to recent blog articles on similar topics:

- South Australia euthanasia bill uses euphemisms to bypass logical roadblocks.

- Australians Federal MP applauds book by Alex Schadenberg.

- Euthanasia: Its not about pain.

- Belgium euthanasia doctors are getting burned out.

How the euthanasia mentality metastasizes

The following article was written by Wesley Smith and published on July 24, 2013 on his blog under the title: How the Culture of Death Metastasizes.

Wesley Smith

Wesley Smith, July 24, 2013

The euthanasia ideology is like a cancer sapping the moral health of western society. And, like a cancer, it never stops spreading.

Here’s how:  I wrote earlier today about Oxford bioethicist Julian Savulescu supporting palliated self starvation as a manner of dying. To get to that conclusion, he uses the right of people to refuse tube feeding–legal because it is deemed a medical treatment–as the multiplyer to grow the death agenda. From, “A Simple Solution to the Puzzles of End of Life? Voluntary Palliated Starvation:”

The process of withholding or removing artificial feeding from patients as young as newborns to elderly people has been commonplace in medicine in many parts of the world.

That’s what happened to Terri Schiavo, and to Tony Bland in a famous UK case.

In the UK, a paralyzed man capable of eating named Tony Nicklinson sued for the right to commit assisted suicide. After he lost the case, he stopped eating and died of pneumonia. 
Savulescu uses Nicklinson’s death as a point of reference to spread the death agenda:

Now if doctors, courts and family members can make a decision that a person’s life is no longer worth living and feeding should be stopped, why can’t the person, like Tony Nicklinson, make that decision, and it be acted upon? Surely the person who has the most right to decide whether life is tolerable is the person who must live that life. 

So it seems to me that ethically Tony Nicklinson had the right to die by starvation. And if other patients received palliative care in the form of analgesia and sedation as a result of decisions made by courts, doctors and their families, then Tony Nicklinson had an equal right to such palliative care as he died.

Did you notice the intellectual prestidigitation? Savulescu misdirects us with the right to refuse medical treatment,which, abracadabra, suddenly becomes a right to be made dead by self-starvation–even though when the tube feeding refusals were being advocated, we were told that wasn’t the point.

That’s not medical care, it is suicide facilitation. And then comes the punch line:

But what, you might ask, is the difference between Tony Nicklinson dying by starvation, perhaps unconscious, over a period of weeks and him being given a lethal injection that would kill him in seconds, painlessly? In both cases, he will certainly die. Surely it is more humane, in these circumstances, to give him a lethal injection than to allow him to starve himself to death? 

This is the argument of course from suicide, to assisted suicide, to euthanasia. That is, it seems that if one has a right not to eat, then one has a right to euthanasia,at least as far as morality is concerned.

The right to refuse treatment = a right to starve oneself to death with a doctor’s help = a right to be lethally injected.

And that, my friends, is a classic example of how the euthanasia mentality metastasizes. By destroying principle, deconstructing definitions, and blurring ethical boundaries.

Link to a previous article:
- Old and Sick People Kill Yourselves.
- The demise of the Liverpool Pathway and death by dehydration.
- Hospital for Sick Children in Toronto dehydrating children with disabilities to death based on Quality of Life Assessments.

Old or Sick People Starve Yourselves!

The following article was written by Wesley Smith on July 24, 2013 and published on his blog under the title: Old or Sick People Starve Yourselves!

Wesley Smith

By Wesley Smith - July 24, 2013

Is there no end to the fixation on getting people dead? Now, in the Journal of Medical Ethics, comes Julian Savulescu–aka Peter Singer, squared–arguing that doctors should help suicidal patients starve themselves to death. From, “A Simple Solution to the Puzzles of End of Life – Voluntary Palliated Starvation:”

Should people be assisted to die or be given euthanasia when they are suffering from terminal medical conditions? Should they be assisted to die when they are suffering but do not have a ‘diagnosable medical illness?’ What about assisted dying for psychiatric conditions? And is there a difference morally between assisted suicide, voluntary active euthanasia and voluntary passive euthanasia?… 

I will argue that there is, within current medical ethics and human rights, a method of assisted suicide which could fall within the limits of the law.

By which he means voluntary self starvation–also pushed in the euthanasia movement as VSED (voluntary stop eating and drinking).

Understand, Savulescu is not talking about those situations in which an elderly or dying person’s body starts to shut down and they reject food and water as a natural part of the dying process. In such cases, it would be wrong to force nutrition on the patient because it will do no physiological good. Indeed, it would cause harm and is not medically indicated.

What about people who refuse food and water as a way of killing themselves? The law generally states that as a general principle (outside of prison), doctors cannot force feed those refusing food because that would be compelling them to receive medical treatment they do not want. 

Whatever the merits and demerits of that view, not allowing forced feeding doesn’t mean that doctors should help people kill themselves via starvation/dehydration by providing medical treatment making the process less onerous, thereby making it less likely that the patient will his or her mind. That’s facilitation any way you look at it.

Claiming that assisting people starve themselves to death isn’t assisting suicide is pure sophistry. Or to put it another way: What do they call assisted suicide in slow motion? Answer: Assisted suicide. 

Top 20 blog articles on euthanasia and assisted suicide.

1. Physician-Assisted Suicide: A Recipe for Elder Abuse and the Illusion of Personal Choice - February 17, 2011.

2. Euthanasia is out-of-control in the Netherlands – September 25, 2012.

3. Declaration of Hope – January 17, 2013.

4. Nitschke continues to promote Nembutal sales over the internet – June 22, 2010.

5. Assisted Suicide Politics in the United States, four victories one to go - March 17, 2011.

6. Belgium euthanasia study finds that nearly half of all euthanasia deaths are unreported – December 4, 2010.

7. Suicide/Asphyxiation Exit Kit company raided by FBI – May 26, 2011.

8. Trisomy 18 is not a Death Sentence. The story of Lilliana Dennis – May 29, 2012.

9. Euthanasia Poll: What do the people of Quebec really want – November 22, 2010.

10. Oregon Suicide rate soars after legalizing assisted suicide - September 12, 2010.

11. Bill to outlaw euthanasia by dehydration passed by Italy’s lower house – July 13, 2011.

12. Dr Phil show features woman who wants to euthanize her adult children with disabilities. – April 16, 2012.

13. Elder abuse caught on video, incident is not isolated - May 22, 2013.

14. BC Court case seeks to legalize euthanasia and assisted suicide - November 12, 2011.

15. Responding to the disturbing decision by Justice Smith in the Carter case – June 20, 2012.

16. Nursing and Ethics – July 23, 2010.

17. Mobile euthanasia unitsstarted in the Netherlands today. – March 1, 2012.

18. 5 reasons why people devaluethe elderly – May 25, 2010.

19. Euthanasia Prevention Coalition to intervene in BC Court case that threatens to legalize euthanasia and assisted suicide in Canada - April 29, 2011.

20. Belgian twins euthanized out of fear of blindness, what may be next in Belgium. - January 14, 2013.

This list is based on the most read blog articles as of July 25, 2013. 

This blog was started on March 18, 2008.

Terri Schiavo Life & Hope Network: Advocates for Patients with Cognitive Disabilties

The following article was written by Tara Behan and published on July 14, 2013 by Main Line Today under the title: Terri Schiavo Life & Hope Network: Bobby Schindler's Organizations Advocates for Patients with Cognitive Disabilities.

After the medical and legal battles surrounding the Terri Schaivo case, her family has taken their Narberth-based organization to the national level.

By Tara Behan, Main Line Today - July 14, 2013

Bobby Schindler on front of portrait of Terri Schiavo

Twenty-three years have passed, but the memories are still vivid. Bobby Schindler’s father called just after 5:30 a.m., and he rushed to his sister’s apartment, where he found her unconscious on the floor. He’d just seen her a few hours ago at his own apartment in the same Florida complex. She’d been fine then. She just had to be fine now.

Paramedics worked on Terri Schiavo for 30 minutes before she was stable enough to be transported. “If she makes it to the hospital alive, it’ll be a miracle,” someone told Schindler as they wheeled her into the ambulance.

His 26-year-old sister did make it to the hospital alive that February morning in 1990. But it was only the beginning.

It’s now June 2013, and Schindler lives in Narberth, his two-bedroom apartment within walking distance of the Terri Schiavo Life & Hope Network. The converted Victorian home is a modest but comfortable headquarters for the nonprofit organization, with just enough space for Schindler and his mother, Mary, who often visits from Florida. His father passed away in 2009. Additional storage space downstairs houses the countless documents and court records that chronicle and dissect what happened to his sister, right up to her controversial death in 2005.

The family originally established the Terri Schindler Schiavo Foundation soon after her death, running it in St. Petersburg, Fla., until 2011. But Schindler—who grew up with his sister and their family in Huntingdon Valley—relocated to the Main Line to be closer to New York and Washington, D.C. With the move came a change in name, but not the overall mission, which is “to protect the rights of people with cognitive disabilities and the medically vulnerable who are facing life-threatening situations.”

“I missed the Philadelphia area a lot,” says Schindler. “I can’t tell you how much support we’ve received in just the past year. It’s a much better situation here for our cause.”

The difference in last names prevents strangers from making any initial connection between Schindler and his sister. But once they find out, he’s accustomed to correcting the misconceptions they have about Terri’s death. “People’s understanding of her condition is completely inaccurate,” he says. “People have said to me that they thought she was brain dead, that she was in a coma, that she was hooked up to machines, or that she was dying. None of that is true.”

Schindler blames most of it on how the media reported the story, which enthralled the masses for more than four years. Schindler and his younger sister, Suzanne, have traveled the world to make sure the truth is out there. And, in 2006, the family wrote the book, A Life That Matters: The Legacy of Terri Schiavo—A Lesson for Us All.

It’s certainly not the lifestyle the former Catholic high school teacher had envisioned for himself. “My friends still can’t believe I do public speaking,” says the soft-spoken Schindler. “They still make fun of me for it.”

But while Schindler never sought out the recognition, he really had no choice.

Terri Schiavo

Credit conservative radio host Glenn Beck for first shining a national spotlight on the Terri Schiavo case in 2000. At the time, he had a radio show in the Tampa area, and he began covering the Schindler family’s seven-year battle with Michael Schiavo. At stake: their daughter’s life.

To this day, there’s no conclusive indication of what caused Terri’s collapse—though drug use and heart attack have been ruled out. What is known is that Terri suffered hypoxic encephalopathy, a brain injury caused by oxygenation starvation to the brain. Soon after her collapse, she fell into a persistent vegetative state. Mechanical life support wasn’t necessary, but she had to be fed through a tube. Initially, Michael and the Schindlers were on the same page: His wife would continue to receive rehabilitation and therapy in hopes that she’d show gradual improvement and eventually could be cared for at home.

In 1992, a $1.5 million medical malpractice lawsuit was awarded to Michael, who couldn’t be reached for comment for this story. As Terri’s legal guardian, he’d promised to use part of the settlement for his wife’s rehabilitation, and the rest would be placed in a trust for her future care. If Terri died, he would inherit the money. By 1993, Michael and the Schindlers were adversaries. “Michael had a complete change of heart from that point on,” says Schindler. “He stopped rehabilitation therapy; he basically abandoned her and confined her to a bed.”

The Schindlers were allowed only visitation rights. They offered to take over care of Terri and release Michael from all responsibility. Beck brought their story to a national audience once his show was syndicated, and even Florida Gov. Jeb Bush tried to intervene.

But the state had enacted a law declaring feeding tubes as artificial life support, and Michael convinced the courts that Terri wouldn’t want to be kept alive by artificial means. On March 18, 2005, her tube was removed. She survived almost 14 days without food or water, finally succumbing to severe dehydration.

The Schindlers may have lost the fight to keep Terri alive, but they haven’t lost their resolve. “We’re not talking about authentic end-of-life situations; we’re talking about people who aren’t dying,” says Schindler. “Just because a person has a profound brain injury, they’re no less valuable as a person.” 

The family has a goal of one day opening the first Terri Schiavo Life & Hope Network Rehabilitation Center, a state-of-the art facility for those with cognitive disabilities. Schindler is currently in talks with a prominent area hospital about a partnership, and Dr. Richard Bonfiglio, former medical director of Bryn Mawr Rehab Hospital, is working with Schindler on the logistics. One goal is to provide evaluations of individuals deemed to be in persistent vegetative and minimally conscious states to determine if their conditions can improve. “We’re hoping that a combination of medicines and therapies will actually help these individuals function at a higher level,” says Bonfiglio. “Another goal is to teach the caregivers how to care for the individuals in a home setting.”

Money for the project would come from private donations, which Schindler is working to secure. Such utter devotion to the cause has kept him and the rest of the family focused in the years since Terri’s death. No amount of time, however, will erase the what-ifs. “Our only intention was to bring Terri home and love her unconditionally the way she was,” says Schindler. “We were unable to do that for her, but we want to help make sure others have that opportunity.”

Visit lifeandhope.com.