Wednesday, May 30, 2012

Assisted-suicide ban strengthened in Louisiana

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition in Louisiana reported in their legislature in brief report that House Bill 1086, a bill that strenghens the assisted suicide ban in Louisiana, that was sponsored by Rep. Alan Seabaugh (R - Shreveport) has passed in the legislature and is headed to Governor Bobby Jindal's desk for signing into law. The article states:
Assisted-suicide ban strengthened

A bid to strengthen Louisiana’s ban on euthanasia is headed to the governor’s desk after receiving final legislative passage.

The state prohibits euthanasia and assisted suicide. House Bill 1086 by Rep. Alan Seabaugh, R-Shreveport, will add the prohibition to the state’s medical-consent law.

Seabaugh’s proposal will spell out that someone authorized to approve medical procedures for another person may not approve any procedure that would be considered assisted suicide. That prohibition will extend to include medical treatment for nursing home residents unable to make their own decisions.

Gov. Bobby Jindal supports the bill.
Louisiana is one of many states that have strengthened protections in law from assisted suicide.

Tuesday, May 29, 2012

Trisomy 18 is not a death sentence: The Lilliana Dennis story.

Alex Schadenberg
By Alex Schadenberg

As the executive director of the Euthanasia Prevention Coalition I have had the opportunity to read stories of despair and stories of hope. This story is one of the greatest stories of hope. 

This is the story of Lilliana Dennis, a child who is living with Trisomy 18, a rare genetic condition that many doctors have labelled as "incompatible with life." 

This is a story of a child who was not supposed to live. A child who has a condition that most doctors would refuse to provide medical treatment for and let to die based on "futile care" theory. A story of a child, who in the Netherlands, may have been euthanized based on the guidelines of the Groningen Protocol because she would be viewed as a "life unworthy of life."

This is a story of a child who is not only living but who is thriving and showing the world that the lives of children with Trisomy 18 are worthy of life, worthy of care and worthy of medical treatment.

On May 23, an article entitled: Hearts full of hope: Surgery extends the life of infant with rare condition was written by Ryan Trares and published in the Daily Journal in Franklin Indiana. This article told the story of Lilliana. Here is the text of the article:

Youtube video from Lilliana's first birthday.

The odds seemed impossible to comprehend.
Lilliana, soon after birth.
Russell and Rhonda Dennis had just learned their newborn daughter, Lilliana, suffered from Trisomy 18. The genetic disorder would stymie her physical and mental development. Fewer than half of babies with the disorder survive their first week. Only about 8 percent live an entire year.
All you can do is take her home and love her while you can, doctors said.
That was about one year ago. The Dennis family never thought that Lilliana would celebrate her first birthday, but after open-heart surgery and regular therapy, she is thriving.
Her parents want to hold her up as an example that though the condition can be traumatic, it’s not an automatic death sentence.
Lilliana's first birthday.
“She’s proven she can live, she can learn,” said Rhonda Dennis, her mother. “She still might not live much longer, but we’ve come to terms with all of the things that the Lord has laid out. He’s in control, and bad things may come, but that’s part of his plan.”
In their southside Indianapolis home, the Dennis family have created a system to help protect Lilliana.
A monitor measures the amount of air she is getting in her lungs, warning the family if she has trouble breathing. Tanks of oxygen are on standby, as are medications to open her airways, in case the little girl struggles.
A gastric feeding tube was implanted in her stomach in April, since she has not developed the ability to eat by mouth. She gets much of her nutrition pumped into her body during the night, then feeds three times during the day to ensure she gets the proper nutrition.
The Dennises have four other children, and none of them have Trisomy 18. Even while Rhonda Dennis was pregnant with Lilliana, she experienced no complications or warnings that their new child would have so many problems.
Lilliana was born May 17, 2011, at Community South Hospital. She was three weeks early and weighed only 4 pounds, 7 ounces. Her small weight was the first sign that something may be wrong. More concrete signs, such as her clenched fingers that never seemed to straighten and feet that curled like rockers, made doctors order a genetic test.

The results showed she had Trisomy 18. The condition, also called Edward’s syndrome, is similar to other genetic disorders such as Downs syndrome. When Lilliana was conceived, she had an extra chromosome, which caused her to develop a heart defect, poorly developed fingers and toes, and blockages that stunted her breathing.
In Lilliana’s case, the immediate danger was the stress on her respiratory system. The hole in her heart prevented oxygen-rich blood from properly circulating through the body. The struggle for oxygen puts undue stress on the rest of the body, and eventually they die.
Little research has been done on Trisomy 18, due to the incredibly high death rate. Estimations are that almost 99 percent of babies with the condition are never even born. For those that are, odds are about 50 percent that they survive their first week.
Such a large percentage of the children born with the disease die quickly, and doctors have little opportunity to study the physical effects, said Dr. Sanjay Parikh, Lilliana’s cardiologist at Peyton Manning Children’s Hospital in Indianapolis.
From the start, the family turned to their faith to cope.
Russell, president of Heritage Bible College in Franklin, and Rhonda Dennis turned to a specific Bible verse for guidance — Romans 15:13. The verse reads, “Now the God of hope fill you with all joy and peace in believing, that you may abound in hope, through the power of the Holy Ghost.”
That message became their rallying cry.
“When you’re told these things up front, you just think it’s God’s plan. I really didn’t think she would live. I thought that she would live a short time, and we’d just show everyone we still trusted God,” Rhonda Dennis said.
They also started researching the problem on their own. Online support groups, as well as national organizations such as the Trisomy 18 Foundation, helped fill in the blanks beyond what their doctors had told them.
The information was frightening, as it revealed how deadly the condition can be. But it also offered hope. They read about children who were attending school and had learned to walk. One woman lived to be 41 and graduated from college.
“The doctors tell you this condition is incompatible with life, that it’s fatal, and that all of these things will more than likely go wrong,” Rhonda Dennis said. “But then you meet these people and see these kids doing stuff, interacting, walking and talking.”
Initially, Lilliana’s doctors told them it was too late for surgery and there was nothing they could do. But the Dennises wanted a second opinion. Working with friends in Ohio, the little girl’s heart scans and images were hand delivered to a doctor based in Toledo, Ohio, who specialized in Trisomy 18 cases.
The family also went to see Parikh. He examined her heart images and immediately said that he could do the surgery.
But he had a catch. Parikh couldn’t guarantee that he could assemble a surgical team that would agree to do it.
Because the life expectancy of any baby with Trisomy 18 is so short, and surgery doesn’t guarantee a greatly extended life, many health officials feel that any surgery or procedure is cruel.
“The prejudice is such that, these babies don’t live long enough, so why put them through the pain and stress of surgery if it isn’t going to make that great of a difference,” Russell Dennis said.
The Dennises also had to plead their case in front of the hospital’s ethics board, which must give the approval on risky or controversial procedures.
The board was split, and unanimous approval was needed to do the surgery. One of the main opponents of doing it asked the family how this operation would affect Lilliana’s quality of life.
“My thinking was, if she gets the surgery, she lives. If she doesn’t, she dies. It was that simple,” Russell Dennis said.
But it was Rhonda Dennis who spoke. She looked at the physician and simply asked, “What if it was your daughter?” After deliberating behind closed doors, the committee emerged and gave their approval for the surgery.
Other parents who had gone through Trisomy 18, as well as their own research, told the Dennis family they had a six-week window to repair the hole in her ventricle which would relieve the stress.
Parikh and his team gathered on Oct. 13 to perform the open-heart surgery, a first for a baby with Trisomy 18. The operation was long, complicated by Lilliana’s small size and her breathing problems. But by the next day, she was stable and recovering in the hospital.
After 17 days of recovery, Lilliana came home with her parents. The change in her health since that time has been noticeable.
Though they take precautions with an oxygen monitor and medications, Lilliana’s breathing has become stronger and more regular. The next challenge is teaching Lilliana’s body to work the way a small child’s should.
Rhonda Dennis is working with her to learn to feed by mouth. She has an oral stimulator that allows her to coat Lilliana’s gums and inner cheeks with baby food, most of which the girl spits up.
Lilliana also sees a physical therapist six times each month. The sessions are designed to help with basic muscle tone, such as lifting her arms and legs, and moving her head. She still can’t lift her head up much when laying on her stomach, but has started actively moving her lower body around.
“She has great hip action. She can scoot all over the floor,” Rhonda Dennis said.
To celebrate Lilliana’s first birthday, the Dennises had a celebration open house. She received her own birthday cake, and gifts from family and friends. After 12 months of fear and concern for their daughter, Russell and Rhonda Dennis are grateful to focus on the positive.
They understand that Lilliana will likely struggle for the rest of her life, and they’ve accepted that. Their goal now is to give their daughter the best life she can have while she’s alive, and to reach out to other parents to help them with the myriad decisions that come with Trisomy 18.
“If the parents don’t know what to push for and what to demand, a lot of times they won’t get it,” Rhonda Dennis said. “There are statistics that show that many of these children don’t live long. But you don’t know that for sure.”

Sunday, May 27, 2012

Massachusetts assisted suicide ballot language challenged

John Kelly (left)
Massachusetts Legal Challenge Update

John Kelly and other Massachusetts voters are challenging the proposed ballot language for the physician-assisted suicide initiative. Mr. Kelly is Director of the disability rights group Second Thoughts (People with Disabilities Opposing the Legalization of Assisted Suicide).

A legal memorandum explaining the challenge can be viewed here.  The memorandum was filed in the Supreme Judicial Court of Suffolk County on Friday, May 25, 2012.

A press release for the initial filing can be viewed below. To view talking points and a fact check for the initiative, go here and here.

*  *  *

Disability Rights Group Challenges Language for Assisted Suicide Ballot Measure as "Misleading, Inaccurate, and Euphemistic"

For more information contact: John Kelly (Second Thoughts) 617-536-5140

Thursday, May 24, 2012

Is the Supreme Court right in deciding to hear Rasouli case.

The Globe and Mail, one of Canada's national newspapers, published an editorial today entitled: The Supreme Court is right to hear life-support case.

The Rasouli family
The Rasouli case asks the question - who has the right to decide to withdraw medical treatment. Dr Brian Cuthbertson and Dr Gordon Rubenfeld at Sunnybrook hospital are arguing that they have the unilateral right to decide when medical treatment can be withdrawn, while the court decision by Justice Himel and the unanimous decision of the Ontario Court of Appeal decided that doctors must first obtain consent before withdrawing life-sustaining treatment, such as in this case, the ventilator.

The Euthanasia Prevention Coalition (EPC) successfully intervened in the Rasouli case at the Ontario Court of Appeal.

In their editorial, the Globe and Mail stated that the Rasouli case is not an ideal case due to the shifting medical facts with regards to Hassan Rasouli, but the Globe and Mail contends that the Supreme Court of Canada needs to provide guidance concerning end-of-life treatment.

The Globe and Mail editorial then states:
The issue – who decides – has been a divisive, emotional one. Giving doctors unilateral decision-making power seems extreme, yet it is equally perverse for families of incapable patients to insist upon costly interventions of no medical benefit and some potential harm. 
The absence of direction has left a policy vacuum, and potentially treatment vacuums in Canadian hospitals. Will physicians hesitate to start trials of therapy in critically ill patients if they think they cannot withdraw them when later deemed futile?
For more information on the Rasouli case - LINK.

EPC disagrees with the Globe an Mail editorial. We are convinced that the decision by the three judge panel of the Ontario Court of Appeal was balanced and offered the best possible guidance that the court could provide.

It is important to note that this case is not related to end-of-life treatment decisions, as stated by the Globe and Mail editorial but rather life-sustaining treatment decisions. Some people are dependent on medical treatment, but not otherwise dying.

It is also important to recognize that the Rasouli decision is not limited to ventilator cases. The definition of medical treatment, and even life-sustaining medical treatment includes artificially providing fluids and food, do not resuscitate decisions, and more.

Link to the EPC response to the Rasouli decision by the Ontario Court of Appeal.

The Ontario Court of Appeal decision was not perfect, but very balanced. It found that doctors could unilaterally withdraw treatments that were providing no benefit, treatments that are physiologically futile, but life-sustaining treatments, such as the ventilator, were not without benefit, in fact the ventilator was effectively accomplishing exactly what it was designed to accomplish.

Since the Rasouli family and the doctors were unable to achieve an agreement, therefore the Ontario Court of Appeal agreed with Justice Himel that the case should be referred to the Ontario Consent and Capacity Board, an government body that was established to decide when medical treatment disputes occur.

If the Supreme Court of Canada grants doctors the unilateral right to decide, then the deeply held values of many Canadians will become unimportant. The doctors are asking that they have the right to decide whether or not they believe the medical treatment is futile.

Let's remember, Hassan Rasouli was wrongly diagnosed as being in a persistent vegetative state, a state that the doctors claim was permanent. Mr Rasouli is now diagnosed as not being PVS, which is exactly as his wife, who was a practising physician before moving to Canada, had contended from the beginning.

The decision of the Ontario Court of Appeal should be upheld by the Supreme Court of Canada.

The EPC is seeking intervening standing in the Rasouli case at the Supreme Court of Canada.

Wednesday, May 23, 2012

New Pain Relief Guidelines in the UK.

BBC news medical correspondent, Fergus Walsh, reported on the new pain relief guidelines that were recently released in the UK by the National Institute for Clinical Excellence (NICE).

The new guidelines acknowledge that many people with cancer and other painful conditions have been under-treated for pain. The NICE guidelines should eliminate under-treatment of pain while providing greater patient safety.

The NICE guidelines encourage the use of stonger Opioids to control pain. The BBC news article stated:
NICE - the National Institute for Clinical Excellence - says "misinterpretations and misunderstanding" have surrounded the use of strong opioids for decades, which has resulted in errors "causing under-dosing and avoidable pain, or overdosing and distressing adverse effects".

There is also the legacy of Dr Harold Shipman who used diamorphine to murder his victims. It has made many doctors wary of prescribing strong opioids.

NICE says the aim is to improve both pain management and patient safety.
The NICE guidelines are attempting to eliminate under-treatment. The BBC news article quoted Mike Bennett, St. Gemma's professor of palliative medicine at the University of Leeds who said:
"Almost half of patients with advanced cancer are under-treated for their pain, largely because clinicians are reluctant to use strong opioids."

The issue also applied to the late stages of other conditions such as heart failure and neurological disorders.
The NICE guidelines encourage communication with patients especially in relation to the concern about addiction. Dr. Damien Longson, Chair of the NICE Guideline Development Groups told BBC news:
"People worry they can become addicted, particularly if opioids are prescribed over an extended period of time. This guideline puts a strong emphasis on good communication between healthcare professionals and patients, which is key to ensuring any worries or uncertainties are addressed with timely and accurate information."
The proper use of strong opioids eliminates the fear that doctors will abuse opioids to kill their patients by euthanasia. Many people have wrongly equated the use of strong opioids with euthanasia. The Euthanasia Prevention Coalition recently released the document "Protecting People" that clearly distinguishes the difference between euthanasia and the proper use of pain management drugs.

Assisted Suicide in Oregon: Evidence of Missed Evaluation for Depression

This article was published by the Charlotte Lozier Institute, May 21, 2012. Link to the article.

By Gene Tarne/CLI Senior Advisor

As required by law, the Public Health Department of the Oregon Health Authority has released its annual report for 2011 on physician-assisted suicides under that state’s Death with Dignity Act (DWDA).

The 1997 law required physicians involved in an assisted suicide to file a number of  standardized forms, providing information on such particulars as sex, age, race and marital status of the patient; type of drug prescribed; reason why the patient was seeking assisted suicide; time between ingestion of drug and death, etc.

For 2011, the numbers for both prescriptions issued and deaths were up over the previous year: 114 prescriptions for lethal doses of barbiturates (up from 97 in 2010) and 71 deaths (up from 65 in 2010).[i]  These are the highest numbers reported for lethal prescriptions and deaths in the 14 years since the law went into effect in 1998. Since 1998, the total number of assisted suicides reported is 596.

But beyond the total number of deaths, the annual report also reveals several disturbing aspects of the law’s implementation.

For instance, the report notes that “nine patients with prescriptions written in previous years ingested the medication in 2011.” “Previous years” means any year prior to 2011. Why is this significant?

A compliance form that physicians who dispense lethal prescriptions are legally required to complete and file requires them to confirm that the patient has a terminal illness and that the patient has “six months or less to live.” As the Oregon-based Physicians for Compassionate Care (which opposes assisted suicide) notes, having a prescription for a lethal drug more than a year before ingestion is “far longer than the law’s 6-month life expectancy guidelines. Clearly, the law’s guidelines are meaningless: not all who receive these prescriptions are terminal.”

More unsettling, given the well-known link between suicide and depression, is how few of those requesting assisted suicide are referred for psychiatric evaluation – not just in 2011, but over the law’s past 14 years.

Under the Oregon law, the proscribing and consulting physicians must determine that the patient requesting a lethal prescription is “capable”; if either believes the patient has a psychiatric or psychological disorder that might impair judgment, then “either physician shall refer the patient for counseling. No medication to end a patient’s life in a humane and dignified manner shall be prescribed until the person performing the counseling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgment (Oregon Revised Statute (ORS) 127.825 s.3.03).”

That there is a link between depression and suicide should not be surprising, and especially in the context of assisted suicide – a diagnosis of a terminal illness with 6 months or less to live is almost certain to trigger a depressive response in the patient.

This link is also well-attested to in literature on the subject. “In this study, psychological factors— nonvegetative depressive symptoms and patients’ sense of a lack of appreciation—were associated with patients’ considerations and planning of euthanasia and PAS” (physician-assisted suicide), according to a study published in 2000 in the Journal of the American Medical Association (JAMA). The study characterized “patient depression” as “the main factor motivating interest in euthanasia or PAS.”

Another study published in JAMA, also from 2000, focused exclusively on terminally ill cancer patients[ii] and found that “[a] SCID[iii] diagnosis of depression was significantly associated with desire for hastened death.” A 1995 study in the American Journal of Psychiatry reported that “the desire for death was correlated with ratings of pain and low family support but most significantly with measures of depression. The prevalence of diagnosed depressive syndromes was 58.8% among patients with a desire to die and 7.7% among patients without such a desire.”?

A fact sheet, “Older Adults: Depression and Suicide Facts” from the National Institute of Mental Health, characterizes depression as: 
“one of the conditions most commonly associated with suicide in older adults.”[iv]
In 2008, researchers from the Oregon Health and Science University (OHSU) reported in the BMJ (formally, the British Medical Journal) that 1 in 4, or 25%, of those seeking assisted suicide in Oregon were depressed. “The current practice of the Death with Dignity Act in Oregon may not adequately protect all mentally ill patients, and increased vigilance and systematic examination for depression among patients who may access legalised (stet) aid in dying are needed,” they concluded.

In 2009, officials with the Oregon Health Department called the ongoing decline in requests for psychiatric evaluation for those seeking assisted suicide a “worrisome trend,” noting that: 
“the decline in formal evaluation raises concerns that depression remains undiagnosed in some patients who request and receive a prescription under the DWDA.”
Yet despite the warning of a “worrisome trend” of declining psychiatric evaluation requests, and despite all the evidence for the linkage between depression and a desire to hasten death, in 2011 only 1 person among the 71 who died was referred for a psychiatric evaluation. This is the same number reported in 2010. In 2007 and 2009, no patients who died were referred for a psychiatric evaluation. Over the 14 years the DWDA has been in place in Oregon, only 40 of the 596 — 6.7% — to die were referred for a psychiatric evaluation.

The absolute number of those seeking assisted suicide in Oregon over the years has been relatively low. Yet among those who do, lethal prescriptions have been issued to those with more than 6 months to live – something clearly proscribed by the DWDA.

More important, the ongoing failure to refer patients seeking assisted suicide for psychiatric evaluation put these patients at risk when there are treatment options available for their depression. As the previously cited JAMA study shows, terminally ill patients’ attitudes towards assisted suicide “appear to be quite unstable.” Of those patients who during an initial interview said they would consider assisted suicide/euthanasia for themselves, about half had changed their minds at a later, follow-up interview. By the same token, some terminally ill patients who had not considered assisted suicide/euthanasia for themselves at the initial interview began to do so at the follow-up interview. The reason? “Depressive symptoms and dyspnea were associated with this instability.” “Thus,” the authors recommend, “physicians who receive requests for euthanasia or PAS should recognize their volatility and not take such requests as settled views but should evaluate patients for depression and unrelieved dyspnea.”

That does not seem to be happening in Oregon.

[i] The state of Washington, which in 2008 adopted an assisted suicide law similar to Oregon’s, reported 70 deaths for 2011 – almost duplicating Oregon’s 14-year high, but doing so in only three years.
[ii] In 2011, 56 of the 71 patients, or 82.4%, who died had some form of cancer. Over the past 14 years, 480 of the total 596, or 80.9%, who died had cancer.
[iii] The Structured Clinical Interview for DSM-IV Axis I Disorders is a diagnostic examination to determine the presence of DSM-IV Axis I mental disorders.
[iv]  In 2011, 49 of the 71 patients, or 69% of those who died, were 65 or older, with the median age being 70. Over the past 14 years, 409 of the 596 patients, or 67.6% who died, were 65 or older, with the median age being 71.

Massachusetts Assisted Suicide question is flawed.

A letter published in the South Coast Today in Massachusetts by Susan Plonka states that the Assisted Suicide question is flawed in Massachusetts. The November election ballot in Massachusetts will ask voters whether they support the "Dying with Dignity act" or not.

Plonka points out that the proposed assisted suicide statute in Massachusetts does not adequately protect people who are depressed. Plonka wrote:
The proposed ballot initiative, Physician Assisted Suicide, that Massachusetts citizens will be deciding on in the November elections has a major flaw. The initiative does not require patients who request suicide to first receive a psychiatric exam. Without this exam, the family and patient do not know if they may be suffering from a highly treatable depression or some other mental illness.

As a registered nurse with more than 40 years of experience, I can tell you that patients when first told they have a terminal illness may enter into a depression. Thoughts of suicide are often a part of that depression. When the person is provided with the appropriate psychological help, those suicidal thoughts usually leave the person and they are able to enjoy their family and friends for the remaining time they have.

Please vote no on this dangerous initiative. At this time of their life, the patients need the support of family and friends, not a lethal dose of poison that robs them of their remaining time.

Susan Plonka

Tuesday, May 22, 2012

Diane Coleman responds to Star Tribune editorial

Diane Coleman
Diane Coleman, the founder of the disability rights group, Not Dead Yet, responded to the editorial that was published in the Star Tribune in Minneapolis Minnesota entitled: Legal, moral struggles to 'death with dignity' an editorial that appears to support the Oregon Assisted Suicide law.

This is what Diane Coleman wrote:
The editorial recommends the Oregon assisted-suicide law as a controlled alternative to the rogue actions of Final Exit Network. Actually, the Oregon law controls assisted suicide like speed limits control highway drivers.

Oregon's law applies to people a doctor predicts will die within six months. Never mind that such predictions are uncertain. And contrary to the editorial, no disinterested witness is required at the actual death, so consent and self-administration are not assured.

The doctor may refer the patient for a psychological consult to determine if the person's judgment is impaired, but only 7 percent of patients have been referred. No counseling is required. Although 36 percent of patients reportedly request assisted suicide because they feel like a burden on family; no information is required about home care that might alleviate such feelings. The top five reasons people request assisted suicide are psycho-social issues, not physical pain, but there is no requirement to provide psycho-social counseling or support.

Under closer examination, the supposed safeguards under the Oregon law are just window dressing. Assisted suicide in Oregon may look better, but underneath it is just the same ugly devaluation of old, ill and disabled people, and we should all reject it.


Georgia replaces assisted-suicide law that was tossed out

The American Medical News reported in the 'News-in-brief' on the law that prohibits assisted suicide in Georgia. The news item is in their May 21, edition and can be found online here.

The AMAD News accurately reported that only Oregon and Washington States have legalized assisted suicide.

The new law was put in place after the Final Exit Network assisted the suicide of John Celmer (58) who was depressed but recovering from cancer.

The news article is as follows:

Georgia replaces assisted-suicide law that was tossed out

Georgia has enacted legislation to outlaw physician-assisted suicide, replacing a law the state Supreme Court struck down in February on First Amendment grounds. The law makes it a felony, punishable by up to 10 years in prison, for any licensed Georgia “health care provider” to knowingly and willfully assist in the commission of a suicide (
The law excludes from its definition of assisted suicide palliative care measures delivered with the sole intent of alleviating pain rather than causing death. With the law, enacted in May, Georgia joins more than two dozen other states with similar criminal statutes. Two states, Oregon and Washington, have laws authorizing doctor-aided death for terminally ill patients.
Georgia’s previous law was struck down because it barred the speech acts of advertising or offering assisted suicide services. The (Georgia) Supreme Court ruling led to the dismissal of charges against a physician and three other people accused of assisting in the suicide of a 58-year-old man with oral cancer.

Saturday, May 19, 2012

Disability Rights Group, Second Thoughts, Challenges Language for Assisted Suicide Ballot Measure in Massachusetts as "Misleading, Inaccurate, and Euphemistic"

CONTACT  John Kelly   617-536-5140      

(Boston, MA) – On Thursday, May 17, 2012, Massachusetts voters including members of the disability rights group Second Thoughts filed a challenge before the Supreme Judicial Court regarding the proposed ballot language for the measure that, if approved, would legalize assisted suicide in the state.

"The ballot language is clearly misleading," said Second Thoughts director John Kelly of Boston. "We want the voters of Massachusetts to know exactly what they are voting on this November," he said.

The petition asks the Supreme Judicial Court to remand the language to Massachusetts Attorney General Martha Coakley and Secretary of State William Galvin with the requirement that they amend the language for clarity and accuracy.

"The ballot language repeats the problems of the bill itself," said Second Thoughts member Paul Spooner of Taunton. "The title is euphemistic, with the word ‘medication’ twisted beyond recognition. People will be led to believe that the measure is about palliative care, when it is about taking a lethal overdose -- in other words, poison. Why not just call the act by its common and legal name, 'physician-assisted suicide?'"

"The way 'terminally-ill' is used in the description is clearly misleading ," said Kelly, "people will be encouraged to assume that being 'terminally ill' is a biological fact, rather than a human guess."

"People with disabilities are very familiar with so-called terminal diagnoses," said Second Thoughts member John Norton of Florence. "Everyone knows someone who has outlived their terminal diagnosis -- I was diagnosed with Lou Gehrig's Disease as a teenager; I'm alive and well fifty years later.  The ballot language misleads by implying that a 'terminally-ill' diagnosis actually leads to death within six months.  Instead, it should say ‘diagnosed as terminal’ or something similar in terms of accuracy."

"And what about choice?," asked Spooner. "There are no safeguards to protect patients from having the poison given to them by an heir or abusive caretaker. No witnesses are required under the law, so if someone else were to administer the drugs, who would know?"

The language submitted by the Attorney General Martha Coakley and Secretary of State is:

Title: Prescribing Medication to End Life [11-12] - Petition G
A YES VOTE would enact the proposed law allowing a physician licensed in Massachusetts to prescribe medication, at the request of a terminally-ill patient meeting certain conditions, to end that person’s life.

Second Thoughts has taken a leading role in opposing the ballot measure, and has been featured in the Boston Sunday Globe Magazine, the Wall Street Journal, and on local TV and radio.

Friday, May 18, 2012

The Rasouli case: Who has the right to withdraw Life-Sustaining Treatment in Canada?

On May 17, the Supreme Court of Canada ruled against a motion from the Rasouli family asking the Supreme Court to Quash the Rasouli case, a case that seeks to determine whether or not physicians have the right to unilaterally withdraw life-sustaining treatment in Canada.

Last year the Supreme Court of Canada decided to hear the Rasouli case, even though a three judge panel on the Ontario Court of Appeal unanimously decided that doctors must obtain consent before withdrawing life-sustaining treatment.

The Supreme Court decided to hear the Rasouli case inspite of the fact that new evidence proves that Hassan Rasouli, the 60 year-old retired engineer who obtained a significant brain impairment from a post-surgery infection in October 2010, is not in a Persistent Vegetative State, a condition that the doctors at Sunnybrook hospital had based their case upon.

The Euthanasia Prevention Coalition successfully intervened in the Rasouli case at the Ontario Court of Appeal and has sought intervener standing in the case at the Supreme Court of Canada.

Link to an article about the Rasouli case.

The Rasouli family.
Some media reports have misinterpreted the Rasouli case by stating that this case will determine whether or not a family can demand medical treatment that doctors consider to be futile. Patients and families do not have the right to demand medical treatment.

The Rasouli case will determine whether or not doctors have the right withdraw life-sustaining treatment that the doctor considers futile, without the consent of the family or the patient. Based on the definition of medical treatment this decision is not limited to ventilator cases. The Supreme Court of Canada decision will extend to issues related to fluids and food, anti-biotics and other life-sustaining treatments.

The Rasouli decision will need to define futility. The Ontario Court of Appeal unanimously decided that medical treatment that is physiologically futile can be withdrawn from a patient without consent. If a doctors is providing treatment that is of no benefit to the patient then it can be withdrawn without consent. The Ontario Court of Appeal decision also found that Hassan Rasouli is benefiting from the ventilator. The ventilator is not futile because it is enabling Mr. Rasouli to breath, which is what the ventilator is designed to do. Therefore the ventilator is not physiologically futile.

The problem with the definition of futility is that the doctors seem to have defined Mr. Rasouli as futile, therefore no level of treatment is considered to be of benefit to him.

Some media reports have suggested that if the Supreme Court of Canada decides that doctors must obtain consent before withdrawing life-sustaining treatment that there will be a large number of expensive cases in an already cash-strapped medical system. The fact is that the Consent to Treatment Act in Ontario has existed for more than 15 years and in that time very few disputes between patients (family or substitute decision maker) and physicians were not resolved. The current system in Ontario is working reasonably well.

The Rasouli case is important.
If doctors are given the unilateral right to withdraw life-sustaining treatment without the consent of the family or the patient, then doctors will become the sole decision makers of what is considered to be an acceptable quality of life. Doctors should not have the right to determine who lives and who dies based on personal and subjective beliefs related to the quality of life of another person?

Issues of equality are at stake. If doctor are given the unilateral right to withdraw life-sustaining treatment without the consent of the family or the patient, then doctors will gain the right to impose their religious or cultural perspectives upon their patients.

Doctors often make a wrong diagnosis. Decisions to withdraw life-sustaining treatment will be imposed on a family, like the Rasouli family, when the diagnosis was originally wrong. You can't bring a loved one back and in the case of Hassan Rasouli, he is not in a PVS state and he continues to improve.

The Supreme Court of Canada should have upheld the unanimous Ontario Court of Appeal decision that was balanced and clearly protected the lives of people who are dependent on life-sustaining treatment while recognizing the that doctors can unilaterally withdraw physiologically futile treatment.

The best article I have read on this case was written by columnist Michele Mandel who wrote a personal article related to the Rasouli case entitled: Supreme Court to make a life and death decision that was published in the Toronto Sun on May 17. Mandel wrote:
Michele Mandel
When my grandmother had a devastating stroke and there was little doubt she was dying, the doctors coldly told my mom there was no hope and they’d like to remove her feeding tube. 
She was going to die anyway so why prolong it? And she was so old, already 96. Somehow they tried to argue that it would be kinder if she allowed her mom to starve to death. 
My mother, God bless her, refused to give her consent. To them, this white-haired great grandmother of 19 was just a dying body using up precious resources. But not to us. 
They didn’t care that she would squeeze our hand when we all gathered at her bedside, or that she tried to smile when my mom would feed her her favourite vanilla ice cream contrary to those doctors’ orders. Loved and valued to her last breath, she defied their predictions and lived another five months. And when she did die, my mother had no guilt that she somehow hastened her end. 
But in a case now bound for the Supreme Court of Canada, doctors argue that they should be the ones — and not the family — who should ultimately have the last word on who lives and who dies. ... 
Rasouli’s condition has noticeably improved and his family believes he is conscious and aware but trapped inside his paralyzed body. He’s given them a thumbs up sign when requested, tracks their movements with his eyes and seems to be trying to communicate. He may well be like the 19% of “vegetative” patients in a Lancet-published study who turned out to demonstrate signs of full consciousness.
Despite his improvement, the Supreme Court has refused to toss the doctors’ appeal, no doubt because they see it as an important test case that needs to be determined. 
So whose life is it anyway? A panel of nine judges will have the unenviable task of trying to decide.
The Supreme Court needs to state doctors are required to obtain consent before withdrawing life-sustaining treatment that is not physiologically futile. This means that a person who is brain injured but living, will not have their ventilator of fluids and food withdrawn by the doctors without consent.

Wednesday, May 16, 2012

Who are the Final Exit Network?

By Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Members of the Final Exit Network (FEN) have been on trial in Arizona, Georgia and now Minnesota. The question is - who are the Final Exit Network?

The first place to look for information about FEN is from Stephen Drake, the research analyst for the disability rights group Not Dead Yet. Drake has been following FEN for many years and is an expert on FEN.

Many people know about the Hemlock Society that was co-founded by Derek Humphry, who co-wrote the book Jean's Way (a story of how he helped to kill his first wife) and who wrote the book Final Exit. The Hemlock Society over the past few years has merged with other groups to become Compassion and Choices. Humphry is now the chair of the advisory board for FEN.

FEN is a group that aids and counsels suicide. FEN will journey with a person to assist them in completing a suicide as part of their Exit Guide Service. The FEN describes the following criteria for assisting a suicide:
  • they suffer from a fatal or irreversible illness or intractable pain,
  • they judge that their quality of life is unacceptable to them,
  • they judge that their future is hopeless.
John Celmer
Notice that the "criteria" has nothing to do with being mentally competent or terminally ill. The court cases that FEN went through in Arizona and Georgia were based on people who were very depressed. In Georgia Susan Celmer, the widow of John Celmer (who died with the aid of FEN), testified before a legislative committee that her husband was experiencing deep depression.

The Washington Post published (January 2012), an article that was written by Manuel Roig-Franzia about Lawrence Egbert, a retired doctor who was hailed as the new face of the assisted suicide movement, after the death of Jack Kevorkian.

The article is very interesting for what it says and for how it describes Egbert's motives.

In the Washington Post article Egbert demonstrates how the "exit hood" works. Egbert also brags about the number of deaths he has assisted and states that he is willing to assist a suicide of a person who is chronically depressed. The Washington Post article states:
Egbert estimates he has been present for 100 suicides in the past 15 years, a figure that puts him in the same league with the famed assisted-suicide maverick Jack Kevorkian, who claimed to have helped more than 130 people die. Egbert calls Kevorkian a “radical” because the latter took an active role in some suicides, building a machine to administer lethal doses and sometimes injecting patients himself. Egbert sees his work as a calling, a vocation aimed at ending suffering. But he says he provides only guidance and support.

Egbert says he approved applications for about 300 suicides, most as medical director of the Final Exit Network, a loosely knit group that claims 3,000 dues-paying members. Even within his own organization, Egbert is controversial. The vast majority of the network’s members suffer from painful physical ailments such as late-stage cancer, he says. But unlike the group’s current leadership, Egbert is also willing, in extreme cases, he says, to serve as an “exit guide” for patients who have suffered from depression for extended periods of time.
Exit Hood
FEN claims that they only provide information, but the Washington Post article indicates that they also counsel the person to suicide. The article describes how FEN promotes the use of the Exit hood (suicide bag):
Final Exit’s patients are instructed that they can buy helium tanks at party stores, Egbert tells me. Remnants of his clients’ visits to party stores lie beneath the hoods, at the bottom of Egbert’s garbage bag. Here is a pack of balloons. Pink, blue, yellow, green.

For the hoods, Egbert’s organization has recommended two suppliers: One sells a $60 hood with a “very adjustable ‘sweatband’ neck, considered superior to bags with Velcro necks,” according to a script used by volunteer phone operators, known as “first responders.” The other option is called an “Orchid Bag” and has an elastic neck.
FEN claims that they do not break the law, but Egbert admits in the article that he not only provides Exit hoods (suicide bags) but that they also remove evidence from the location after the death has occurred. The Washington Post article states:
Egbert tells me that years ago he asked someone who was about to “exit” if he could reuse the hood to save future patients the cost of buying a new one. The patient was delighted with the idea, Egbert says. He started asking everyone.
The hood in my bare hands feels slightly slick. So, this one, the one I’m holding, has been used to end someone’s life? I ask. Egbert tells me it has surely been used at least once, and maybe several times, and the same could be said for most of the other 17 hoods in the garbage bag.
The Washington Post article indicates that Egbert will often provide a used Exit hood for the suicide. This statement clearly indicates that FEN counsels and provides the means of death for suicide. One or both of these acts would contravene the law in most states and in most countries.

FEN claims that they are a group of people who only journey with a dying person to there final end. Egbert describes an earlier assisted suicide where the woman had failed twice to commit suicide.The Washington Post article stated:
In the early days, Egbert says, he and other volunteers used a common supermarket “turkey bag,” which had a tendency to fail on occasion. Once, he recalls, he was working with a woman who’d had two unsuccessful suicide attempts. The woman seemed to die but awoke a few minutes later. “You screwed up twice yourself — you call in the pros, and we couldn’t do it either!” he told her. They patched a hole in the bag, and this time it worked.
Clearly Egbert actively participated in the assisted suicide death.

Egbert admits a couple of times in the Washington Post article that he is unsure of what he is doing. He refers to the fact that his father was involved with the Nuremberg trials after World War II and he also refers to his opposition to the Death Penalty. The Washington Post article states:
The father’s experiences prompted the son’s curiosity. The younger Egbert fixated on the appalling actions of Nazi doctors, especially the experiments they had conducted, such as immersing inmates in ice water or injecting them with poisons.
“Most of them thought it was justified,” Egbert says one afternoon. “Some of them were delighted by it.”
As he did with the death penalty doctors in Texas, Egbert weighed the choices that Nazi doctors made — choices that eventually led to unspeakable evils — against the choices he made.
“It makes me suspicious of everything I do — that I might be doing something evil,” he says. “I think about it a lot.”
He thinks of doctors consulting for executions, for instance, and imagines “a slippery slope.” He also wonders whether his own work could nudge society toward something awful.
“I could be part of a slippery slope,” he says, “to us becoming like Nazis — the Final Exit Network, and me as an individual.”
Egbert explains in the Washington Post article how FEN decides to assist a suicide.
To be “guided” by the network, people who want to commit suicide are asked to apply for membership and pay annual dues of $50, which goes toward operating expenses such as travel. After a person joins, a “medical committee” decides whether the applicant is eligible, starting a process of consultations that can last years. The committee was supposed to have three members, but in reality Egbert was making most of the decisions on his own. ...
Egbert has estimated that he approved 95 percent of applications.
Egbert also described another case from a few years previous, a woman who experienced chronic depression who Egbert and Jerry Dincin assisted the suicide.
The woman was a 65-year-old teacher who had suffered from extreme bouts of depression since she was a teenager and was prone to violent outbursts. Still, “I had very lively mixed feelings, just looking at her,” Egbert says. “Very attractive, very intelligent. A woman who could walk for miles — pretty much do anything.”
He decided she qualified, though, because she had tried antidepressants and electroshock therapy without success. Egbert and Dincin rented a car and drove to her home. She put on a bathrobe and followed their instructions to sit with her head tilted slightly up. She released the valves, pulled the hood over her head and Egbert told her to “breathe normal.”
“At that time I took her hand,” Egbert says. “My colleague took her other hand.” He was comforting her, not trying to stop her from removing the hood, he says.
When it was done, they collected the equipment and left.
It is interesting that Egbert admits that they held her hands, and then emphasized that they were not trying to stop her from removing the hood. The official FEN guidebook emphasizes the importance of holding a persons hands to prevent them from removing the hood.

It is important to understand that groups, like FEN, think that they are helping people, when in fact they are fulfilling their own personal and emotional needs.

Causing death creates a feeling of power and control. Egbert liked to decide that they would go ahead and assist the suicide of a person who is depressed or suicidal.

It is also important to notice that the people who are dying are rarely terminal, usually depressed, and often living with chronic conditions or with disabilities.

The next time you read an article promoting euthanasia for people who are terminally ill or suffering, read the article from the Washington Post. It is important to notice what Egbert is really saying as he is being promoted as being more prolific than Jack Kevorkian.