Monday, April 17, 2017

-----Maier-Clayton told CBC News that "non-existence" was better than living in constant pain and took issue with the government's contention the law is meant to protect people with mental health issues. "If someone is suffering for years and years like myself, then what are you protecting them from?" he said. "You're not protecting them. You're confining them to pain."---------My sister was under threat of a Do Not Resuscitate Order from 2010 to 2015. It maybe that she is always going to be vulnerable. It may be that the system has devolved completely into survival of the fittest mode. It may be that the egg of confidence in the system is permanently cracked and will never be put together again. But at least my family knows it is cracked. And now you do as well.-------ulie Ali Just now · CBC News · While I am sad that this man took his life I see no reason to extend the right to death by doctor to the mentally ill. They are already at risk of premature termination as indicated by the case of my sister who faced "Do Not Resuscitate", "No ICU", "No intubation" orders repeatedly in 2010, 2013 and 2014. Why was she given such orders? Good question. She had a personal directive indicating full resuscitation. An R3 Goals of Care was forced on her that does not allow for intubation. It's a precarious situation being a person with severe handicaps and this junk about providing the severely handicapped with access to death by doctor is like providing a loaded gun to a child to play with. Nope. There is already too much opportunity among doctors to prematurely terminate the mentally ill in Alberta and we don't want to add death by doctor to these folks who can be classified as competent even on the whims of doctors. We already have expedient decision making among the medical professionals that I have encountered with reference to my sister and we don't need any more junk like this.------------

#NotDeadYet-- I don't believe death by doctor should be a choice given to the mentally ill or those without insight. If you aren't completely sure of what the business entails why would you be allowed to decide on this permanent solution to health conditions? Most of all why would any reasonable doctor do this junk for someone with mental illness?
First do no harm.
I'm not sure doctors even understand this matter based on the actions of doctors at the Grey Nuns Hospital who worked together over years to systematically put DNR orders on my sister's medical records. Why would these doctors choose this route unilaterally -against the family wishes and certainly against the patient's own personal directive?
Could it be that doctors at the Grey Nuns Hospital were fed up of repeated hospitalizations, couldn't do the investigation to determine the areas of difficulty in my sister's care and simply decided it wasn't worth it to provide her with life saving measures? Who gives these doctors the right to do this junk? Apparently if there aren't advocates around to take issue with such orders, they stand. For years. And each time we went to hospital we'd have to fight to get her resuscitation.
It's a joke in Alberta.
And just add to this joke the second matter of providing death by doctor to these poor souls. What would happen then?
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How does one prepare for Questioning? You do the work of preparation by looking through the medical files, the Protection for Persons in Care abuse cases (2 of them), what little audit information you have been given by the folks at Alberta Health (only the CCHSS audit of January 2015 was provided).
I have still not got:
1) Alberta Health Quality Audit of the Good Samaritan Extended care at Millwoods that was done in 2014.
2) AHS Quality Review of 2014
3) Good Samaritan Society consultant report on the respiratory services done in 2014
4) Any other complaints and audits that pertain to this case and other facilities
Although it is one week before questioning no one in the government of Alberta or the Good Samaritan Society have provided the outstanding information. Why not? I guess because they don't have to provide this information to citizens who are being sued. It's our problem.
So without the information I need to defend myself in court I have to sieve through Rebecca's medical files.
I look through all the hospital and emergency visits and tabulate them here:
List of hospitalizations and emergency visits
Grey Nuns Hospital (GNH) February 20, 2010 Emergency
GNH February 22, 2010 Emergency
GNH February 22, 2010 to April 28, 2010 Hospitalization
University of Alberta Hospital (UAH) July 6 to July 12, 2010 Hospitalization
GNH August 23 to August 25, 2010 Hospitalization
GNH September 27 to September 29, 2010 Hospitalization
GNH October 1, 2010 Emergency
GNH November 4 to November 6, 2010 Emergency
UAH November 6 to November 18, 2010 Hospitalization
GNH March 14 to April 21, 2011 Hospitalization
GNH July 19, 2011 Colonoscopy Routine
UAH April 26, 2011 to May 5, 2011 Hospitalization
UAH November 30 to December 8, 2011 Hospitalization
GNH August 1, 2012 Emergency
Royal Alexandra Hospitals (RAH) March 27, 2013 Emergency
GNH (ICU) August 18 to August 21, 2013 Hospitalization
UAH August 22, 2013 Emergency
RAH (ICU) August 22 to September 12, 2013 Hospitalization
GNH March 21 to April 11, 2014 Hospitalization
GNH (ICU) May 29 to June 3, 2014 Hospitalization
UAH June 12 to July 23, 2014 Hospitalization
GNH August 2, 2014 Emergency
GNH Aug 27, 2014 Cardiologist Routine
GNH September 26, 2014 Emergency
GNH November 15, 2014 Emergency
EMS to facility November 20, 2014
I also look for places where Rebecca was pushed through the cracks in our society where handicapped citizens are pushed through by the medical system. Why does this happen? Hospitals and continuing care places are cognisant that they cannot say that a citizen is too much trouble to keep alive and so they beat about the bush. This is how Rebecca was being forced through the cracks of our society. I will refer to the doctors as Doctor Death doctors 1, 2, 3 etc.
1) GNH September 27 to September 29, 2010 Hospitalization --Doctor Death # 1 says he notices that Rebecca is full code and offers his unwanted opinion that intubation would not go well. Please note that without intubation and with a failed BIPAP trial my sister will die.
2) GNH November 4 to November 6, 2010 Emergency -Doctor Death # 2 is pretty organized. She goes to all the other Doctor Deaths around her (# 3, 4 and 5) to back her up. As a consequence of agreement of Doctor Death # 2, 3, 4 and 5, Rebecca magically has full competence to deny treatment with sky high carbon dioxide levels plus limited IQ and isn't offered any other help. She was not allowed into ICU or even a regular medicine bed. She was deemed to be stable and booted out. Dad had to rush her to the UAH straight after where she was further treated.
3) Dad avoids further DNR crisis by refusing to take Rebecca to the Grey Nuns Hospital for carbon dioxide narcosis issues. This was probably why there were no premature termination attempts in 2011 and 2012.
4) GNH (ICU) August 18 to August 21, 2013 Hospitalization--While here Doctor Death 6 indicates happily that R3 status was "established with patient and father). Again she is dumped out supposedly stable from ICU but is taken to the UAH straight after.
5) UAH August 22, 2013 Emergency --Doctor here (not a doctor death doctor) is frankly bewildered by the sea of premature termination orders he is confronted with. He says GNH ICU indicates R3 (no intubation and chest compressions) but Good Samaritan Extended Care information says full code.
Meanwhile he sees what we have seen which is the good work of premature termination orders --no ICU/no intubation.
6) RAH (ICU) August 22 to September 12, 2013 Hospitalization-they just do the full code
7) GNH (ICU) May 29 to June 3, 2014 Hospitalization--Not to be deterred by all the failed attempts at premature termination to date Doctor Death #7 indicates "Currently an R1, however given medical condition --R3 after discussion"
8) UAH June 12 to July 23, 2014 Hospitalization --Rebecca goes to the UAH where doctors refuse to change the R3 status. Who knows why? An ethicist writes a consultation report. Before this moment no one had paid attention to my query of why they were trying to prematurely terminate a severely handicapped woman whom they had determined lacked the ability to make her own medical decisions --nor had they listened to my dad either. The family's input was treated as frivolous --as if we were asking for a dumb thing rather than the life of a human being. Nope all the doctors had decided until the ethicist asked them the simple question of why does a drug addict get resuscitation but not Rebecca? Even the ethicist was willing to listen to the dumb doctors about his opinion. What the heck?
Does no one understand that this is a matter of life and death where a severely handicapped woman cannot do her own compliance program with a BIPAP machine without a compliance program and helps?
Apparently not.
From 2010 to 2015 the system was willing that Rebecca end up in emergency and hospital for repeated DNR experiences because the system cannot get its act together as it should have got its act together.
Why doesn't the system get its act together?
Well it is like this.
Staff and extra work costs money.
One side tells me there isn't enough money (Good Samaritan Society) and that they are losing money on the respiratory program.
The other side (Alberta Health and AHS) says that patient care based funding provides the right amount of cash depending on the problems of the patient.
In between is a severely handicapped woman who cannot tell me what is going on. Staff told us there were compliance problems but not that she was getting minutes of time on the BIPAP. How would we know that she did not get the time she needed on the machine? We thought it was the drugs that were the problem.
It was only when I got the data card download from a new machine in 2014 that I found the problems. Staff did not turn on the machine for two separate incidents. She did not have time on the machine because there was no compliance program set up. She could not be compliant because the drugs weren't sometimes in the therapeutic range. She was dirty, peeing everywhere, falling down, incoherent and out of control because nearly all the time at the facility she had blood gas levels that were elevated. Imagine that folks. My sister was left to survive while all around me folks were telling me that they could not FORCE CARE on her.
Now I am going to court. I am going to speak about the failures of Alberta Health. I am going to speak about the refusal of AHS to do their oversight jobs until she had her second adverse event. I am going to speak about how everyone blamed her for what she could not help. Imagine if you are in this situation. And now look at her today.
She is compliant.
She has not been in the hospital or emergency for the entire time at Villa Marguerite.
She is clean.
If she pees, there are people who know how to help her to get to clean.
If there is a problem my sister Sue writes and phones to get her the help she needs.
What happened here?
What is the difference?
I believe it is the removal of care plans from the continuing care business.
The Villa Marguerite is staffed by AHS staff. They decide the care plans. The care plans are executed by the Villa Marguerite staff.
It may be that such a solution is required for the care of residents in the continuing care system. If you are going to keep continuing care in the private sector, don't put the care plans in the hands of the private business. Get the public sector to do the care plans and then get the private sector to execute the plans. But if you are doing this why don't you have the care entirely in the public sector? Too much money spent on staff liabilities --salaries, pension plans and such like.
It's the way it is.
My sister was under threat of a Do Not Resuscitate Order from 2010 to 2015. It maybe that she is always going to be vulnerable. It may be that the system has devolved completely into survival of the fittest mode.
It may be that the egg of confidence in the system is permanently cracked and will never be put together again.
But at least my family knows it is cracked.
And now you do as well.











http://www.cbc.ca/news/canada/windsor/adam-maier-clayton-assisted-dying-1.4072312


Tributes flow for Windsor man who lobbied for assisted-dying rights for mentally ill

Adam Maier-Clayton suffered from mental illness, including OCD, depression and anxiety

By Lisa Xing, CBC News Posted: Apr 16, 2017 11:33 AM ET Last Updated: Apr 16, 2017 4:35 PM ET
Adam Maier-Clayton, who suffered what he called debilitating pain, had lobbied the government to legalize doctor-assisted dying for the mentally ill.
Adam Maier-Clayton, who suffered what he called debilitating pain, had lobbied the government to legalize doctor-assisted dying for the mentally ill. (Lisa Xing/CBC)
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A Windsor man who urged the federal government to legalize doctor-assisted dying for people like himself with mental illness has taken his own life.
Adam Maier-Clayton's mother, Margaret Maier, said in a Facebook post she was "devastated" that her "beautiful son" had committed suicide.
"My son has been on a campaign for several years now on the right to die for the mentally ill," she wrote. "He was in such pain and yet, continued to battle with dignity until the very end."
Maier-Clayton told CBC News in October that he has battled anxiety, mood disorder and obsessive compulsive disorder since he was a child. He said he was wracked with debilitating pain that felt like he was being burned with acid.
The 27-year-old business school graduate told CBC News the pain was constant but worsened with any kind of cognitive activity like reading and speaking.
"I can't get through three pages of a book," he said at the time. "Just to get through the first two would leave me with six hours of pain. I can't read, I can't write."

Tried both medication and therapy

Maier-Clayton tried a variety of medications and therapy, including antidepressant and anticonvulsant drugs. He also tried counselling and extensive therapy, including experimental ketamine infusion therapy. Doctors said they could find no physical cause for the pain and linked it with his mental illness.
When nothing worked to ease the pain, Maier-Clayton began to agitate, using social media and stories in traditional media outlets, for the right to end his own life, legally and with the assistance of a doctor.
'Bill C-14 absolutely must be amended so that sufferers of refractory illness (both mental and physical) have the ability to decide for themselves if they wish to continue suffering and enduring their illness or not'- Adam Maier-Clayton, advocate for assisted dying
Canada's doctor-assisted dying law does not apply to patients with mental illness. The law only applies to adults in an "advanced stage of irreversible decline" facing a "reasonably foreseeable death" from an incurable illness.
In December, the government launched a review of the assisted-dying law that would study, among other issues, whether the law could be broadened to encompass patients suffering strictly from mental illness.
In a Facebook update posted Thursday shortly before his death, Maier-Clayton urged his supporters to watch his videos and he urged the government to amend the assisted-dying law.
"Bill C-14 absolutely must be amended so that sufferers of refractory illness (both mental and physical) have the ability to decide for themselves if they wish to continue suffering and enduring their illness or not," said the post. "If not, giving them a dignified, painless way out of their suffering is what we need to do if we wish to truthfully be able to consider ourselves a civilized society."

Advocate for 'rational suicide'

Philip Nitschke, founder of Exit International, an end-of-life choices information and advocacy group, issued a statement on Facebook Sunday about Maier-Clayton, who he said was the youngest member of his organization.
"Adam was a strong believer in personal choice, and an advocate for rational suicide, and we had many long Skype arguments over the best ways of ensuring that the needs of younger people are met," said Nitschke in the statement. "Adam carried out an active and effective social media campaign on this issue, and he urged Exit to continue this campaign after his death."
Nitschke said there would be a special tribute for Maier-Clayton at the upcoming Exit conference in October in Toronto, where Maier-Clayton had been scheduled to speak.
Maier-Clayton graduated with honours in business from Algonquin College in Ottawa but moved home to stay with his father in Windsor, saying the pain was too much and he needed help.
Graham Clayton told CBC News at the time he used hand signals and gestures to communicate with his son, to reduce the amount of time he spent talking.
"It's hard," he said at the time. "You keep hoping the doctors will find something, come up with something. There's hope after hope, then your hopes are dashed."
Maier-Clayton told CBC News that "non-existence" was better than living in constant pain and took issue with the government's contention the law is meant to protect people with mental health issues.

"If someone is suffering for years and years like myself, then what are you protecting them from?" he said. "You're not protecting them. You're confining them to pain."

While I am sad that this man took his life I see no reason to extend the right to death by doctor to the mentally ill.
They are already at risk of premature termination as indicated by the case of my sister who faced "Do Not Resuscitate", "No ICU", "No intubation" orders repeatedly in 2010, 2013 and 2014. Why was she given such orders? Good question. She had a personal directive indicating full resuscitation.
An R3 Goals of Care was forced on her that does not allow for intubation. It's a precarious situation being a person with severe handicaps and this junk about providing the severely handicapped with access to death by doctor is like providing a loaded gun to a child to play with.
Nope. There is already too much opportunity among doctors to prematurely terminate the mentally ill in Alberta and we don't want to add death by doctor to these folks who can be classified as competent even on the whims of doctors. We already have expedient decision making among the medical professionals that I have encountered with reference to my sister and we don't need any more junk like this.


An Ontario man who urged the federal government to legalize doctor-assisted dying for people like himself with mental illness has taken his own life.
CBC.CA

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