Friday, October 28, 2016

Lawyers also need to back legal challenges, she said. “If we have the right to die, will the court recognize the right to good care so we have the right to live?”----------Julie Ali · University of Alberta I doubt that anyone cares about handicapped citizens in Alberta who live in continuing care. Families have to listen to the government of Alberta talk big about the care of our family members but the reality is quite different. After experiencing five years of turmoil in the long term care system, I have no belief that the system will recognize the rights of the disabled citizen-- to care of any sort--much less adequate care with the essential supports/services necessary to enable them to live full lives of dignity---because it is simply easier and cheaper for the system to let handicapped residents struggle on their own and finally die prematurely. Why else was my handicapped sister left without an integrated care plan for years in long term care? Why did she lack the supports and services such as help in the form of a compliance program to use her BIPAP machine until I became involved? Organizations tell us that they have to respect the decisions of citizens without insight to refuse treatment but this is nonsense. If you are a handicapped resident without the abilty to manage your care, then there needs to be help provided. But it costs more to provide this extra help and the reality is that no one bothered to institute a compliance program for my sister until I got involved. Instead of assisting her with her profound deficits the system characterized her as non-compliant and after frequent hospitalizations, the Grey Nuns Hospital doctors unilaterally decided on a do not resusciate order (DNR). I went to three health ministers--Mr. Horne, Mr. Mandel and Ms. Hoffman to get this order reversed and to raise the issue of DNR orders imposed on citizens without insight despite the presence of a personal directive that required full resuscitation. There was no attempt made to do the necessary investigation of her problems by the system. I had to do the data card downloads to show abuse in two incidents where staff failed to put on her BIPAP machine. This was no simple case of non-compliance but of system-wide failures in care that no one is interested in investigating because it shows that the system failed a severely handicapped woman. It is all about cover your butt in Alberta rather than acknowledging adverse events and ensuring that they don't repeat. What we have in Alberta in my opinion-- is a situation that ensures that handicapped residents are suffering a loss of dignity, health and their rights. The level of care that is in place due to lower staff: resident ratios ensures that residents have to cope as best they can with substandard services, less staff time than necessary to meet their needs and under-trained staff. Without advocates, these handicapped citizens are not only prone to choosing death over substandard living conditions if they have insight but also to being prematurely terminated if they lack insight. We have to listen to politicians speak compassionately about the needs of complex care patients like my handicapped sister without actually doing anything to resolve these problems other than perhaps dumping them in SL4 facilities where their care needs are not met. Unfortunately, families and residents have no control over placement decisions. We are not given a plain language document to explain for example the rationale for a downgrade from long term care to SL4 status. We are not given an independent appeal process to challenge such downgrades but must go through an AHS appeal process that I have no confidence in. I believe such an internal AHS appeal process is simply a way for the system to tie up loose ends and shut down any complaints in a politically expedient manner. Even if by some miracle the situation is that the resident is put in long term care there are still problems as per our experience. The long term care situation is only marginally better than the supportive living placements in terms of staff training and mandated staff requirements. However, in my opinion, the level of care offered to residents in long term care is still inadequate and staff:resident ratios are not good. If this situation is present in long term care where some control of such matters is present thanks to the Nursing Act you can imagine the situation in supportive living situations. The recent report by The Parkland Institute indicates that the broken promises of the NDP folks continue the broken promises of the PC folks. The emphasis by government is on cost savings, downgraded services in supportive living placements, privatization and an abdication of government responsibility. It is all about the money. https://d3n8a8pro7vhmx.cloudfront.net/.../losingground... Losing Ground Alberta's Residential Elder Care Crisis In 2016, Alberta had 377 more LTC beds than it did in 2010, or an increase of 2.6%. The number of DSL beds, on the other hand, increased by 4,770, or an increase of 92.3%.


Beware of assisted dying as 'shame relief,' former human rights commissioner says

JOANNE LAUCIUS, OTTAWA CITIZEN, OTTAWA CITIZEN  10.16.2016
Beware of assisted dying as 'shame relief,' former human rights commissioner says
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/ OTTAWA CITIZEN
Vulnerable people need to be protected from being induced to seek assisted death as “shame relief,” a former Ontario Human Rights Commission chief commissioner told a conference on assisted dying in Ottawa on Saturday.
“We cannot understand vulnerability, or protect vulnerable persons, without first grappling with inducement,” said Catherine Frazee, who was chief commissioner between 1989 and 1992. Frazee was speaking to an audience of doctors, lawyers, academics and policymakers during a conference at the University of Ottawa.
Inducement is something attractive that leads or persuades someone to take action. And relief from frailty, dependence, incontinence and immobility is an inducement for many seeking assisted death, she said. In Oregon, where assisted suicide is legal, half of the people who requested it cited “losing control of bodily functions” among their primary concerns. Up to three-quarters cited “loss of dignity.”
“If shame is a kind of social pain, and if we are in the business of protecting vulnerable persons from inducement, then I think we do need to be attentive to the forces and structures, policies and practices that produce it,” she said.
Frazee has spinal muscular atrophy, a neuromuscular disorder. She was a professor of disability studies at Ryerson University until her retirement in 2010, and is now an adviser to the Vulnerable Persons Standard, a coalition of groups advocating to protect people who might be coerced or induced to seek assisted death.
Society is “able-ist” — it prizes independence and those who are autonomous, able and productive, she said. The ideal is based on the expectation that everyone will have the same kind of body for all of their lives — and preys on the fear of losing ability.
Frazee is concerned that severely disabled people who cannot access the kind of care they need will “choose” assisted death out of desperation, and points to the case of Archie Rolland, a 52-year-old Montreal man with advanced ALS who requested and received assisted death earlier this year.
Rolland was eligible for assisted death and chose it, but that was because he could not get the care he needed, said Frazee. In a series of emails with a Montreal Gazette reporter, Rolland said he was tired of fighting for compassionate care in his long-term care facility, calling his situation “unbearable.”
“What Mr. Rolland wanted was not too much to ask – simple respect and excellent care,” she said. “When Archie Rolland could not, after persistent attempts, have what he wanted, he chose assisted death. And that choice was honoured.”
Frazee urged those at the conference to come up with creative strategies, energized ethics and policies to “break out of the old scripts.” The challenge is to help vulnerable people imagine a good future, she said. Doctors need to ask patients what a good future would look like to them and help them find the technologies and services to make that possible.
Lawyers also need to back legal challenges, she said. “If we have the right to die, will the court recognize the right to good care so we have the right to live?”


Julie Ali ·
I doubt that anyone cares about handicapped citizens in Alberta who live in continuing care. Families have to listen to the government of Alberta talk big about the care of our family members but the reality is quite different.

After experiencing five years of turmoil in the long term care system, I have no belief that the system will recognize the rights of the disabled citizen-- to care of any sort--much less adequate care with the essential supports/services necessary to enable them to live full lives of dignity---because it is simply easier and cheaper for the system to let handicappedresidents struggle on their own and finally die prematurely.

Why else was my handicapped sister left without an integrated care plan for years in long term care? Why did she lack the supports and services such as help in the form of a compliance program to use her BIPAP machine until I became involved? Organizations tell us that they have to respect the decisions of citizens without insight to refuse treatment but this is nonsense. If you are a handicapped resident without the abilty to manage your care, then there needs to be help provided. But it costs more to provide this extra help and the reality is that no one bothered to institute a compliance program for my sister until I got involved. Instead of assisting her with her profound deficits the system characterized her as non-compliant and after frequent hospitalizations, the Grey Nuns Hospital doctors unilaterally decided on a do not resusciate order (DNR).

I went to three health ministers--Mr. Horne, Mr. Mandel and Ms. Hoffman to get this order reversed and to raise the issue of DNR orders imposed on citizens without insight despite the presence of a personal directive that required full resuscitation. There was no attempt made to do the necessary investigation of her problems by the system. I had to do the data card downloads to show abuse in two incidents where staff failed to put on her BIPAP machine. This was no simple case of non-compliance but of system-wide failures in care that no one is interested in investigating because it shows that the system failed a severely handicapped woman. It is all about cover your butt in Alberta rather than acknowledging adverse events and ensuring that they don't repeat.

What we have in Alberta in my opinion-- is a situation that ensures that handicapped residents are suffering a loss of dignity, health and their rights. The level of care that is in place due to lower staff: resident ratios ensures that residents have to cope as best they can with substandard services, less staff time than necessary to meet their needs and under-trained staff. Without advocates, these handicapped citizens are not only prone to choosing death over substandard living conditions if they have insight but also to being prematurely terminated if they lack insight.

We have to listen to politicians speak compassionately about the needs of complex care patients like my handicapped sister without actually doing anything to resolve these problems other than perhaps dumping them in SL4 facilities where their care needs are not met. Unfortunately, families and residents have no control over placement decisions. We are not given a plain language document to explain for example the rationale for a downgrade from long term care to SL4 status. We are not given an independent appeal process to challenge such downgrades but must go through an AHS appeal process that I have no confidence in. I believe such an internal AHS appeal process is simply a way for the system to tie up loose ends and shut down any complaints in a politically expedient manner. Even if by some miracle the situation is that the resident is put in long term care there are still problems as per our experience.

The long term care situation is only marginally better than the supportive living placements in terms of staff training and mandated staff requirements. However, in my opinion, the level of care offered to residents in long term care is still inadequate and staff:resident ratios are not good. If this situation is present in long term care where some control of such matters is present thanks to the Nursing Act you can imagine the situation in supportive living situations.

The recent report by The Parkland Institute indicates that the broken promises of the NDP folks continue the broken promises of the PC folks. The emphasis by government is on cost savings, downgraded services in supportive living placements, privatization and an abdication of government responsibility. It is all about the money.

https://d3n8a8pro7vhmx.cloudfront.net/.../losingground...

Losing Ground

Alberta's Residential Elder Care Crisis

In 2016, Alberta had 377 more LTC beds than it did in 2010, or an increase of 2.6%. The number of DSL beds, on the other hand, increased by 4,770, or an increase of 92.3%.
LikeReplyJust now
Unik O'Connor
So they found a new name 'shame relief'. If god forbid I ever get ALS or whatever else keeps me bedridden, not able to talk or move and just be there waiting for my death. I want the option to opt out of life, it's a burden to our families, like why would you want to be a vegetable, that's not living, that's hell.
LikeReply19Oct 15, 2016 4:13pm
Rosemary Ann
I agree with you
LikeReply3Oct 15, 2016 5:08pm
Ishan Mistry Ishan ·
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LikeReplyOct 15, 2016 8:19pm
David Odell ·
Sure, having the option is great. However, your expectation of what life living with ALS would be is pretty low. Stepen Hawking has ALS, and clearly, his life sucks so badly I can't imagine anyone wanting to live it (sarcasm warning). All he can move is a cheek muscle, but through technology he can still live a wonderfully valuable life. But not everyone with ALS is a Stephen Hawking. So sure, having the option to off yourself is there. But, if your life with ALS sucks, not because of ALS, but because of a lack of access or support, is assisted death the right answer?
LikeReply3Oct 16, 2016 8:54am
Rose Schulenberg ·
Works at Shalom Manor
how can you just assume that you would be a burden to your family?? When my mom died I would have done anything to have her with us as long as possible. to care for her, loving her the way she cared for and loved us. I would have done anything just to be able to hold her hand.
I have a friend who died in hospice. Before he died, he said it was the most beautiful thing he had experienced. Surrounded by all those he loved and who loved him.
We need to focus on better palliative care, better pain management. Put our money towards that instead of killing people.
LikeReply6Oct 16, 2016 12:56pm
Joanne Rochester
My Mom lived for decades with MS; she was diagnosed in 1964, although she had her first attack when she was 14. For the last 30 years it was severe enough to restrict her to a power wheelchair and to put her in diapers. She died this July at the age of 84, of kidney failure, after a long and well-lived life that she was not yet ready to leave. Don't assume that disability makes life not worth living. Life continues in a wheelchair; just because part of you stops working doesn't mean the rest does.
LikeReply4Oct 17, 2016 1:18pm
Beverley Bell ·
Loss of dignity cannot be ratified by improved access to care. One's sense of dignity is unique to the individual. Catherine Frazee is a very strong person, but many others are not and their right to die cannot be compromised because Ms. Frazee lives well with her disability.
LikeReply13Oct 15, 2016 5:00pm
Unik O'Connor
My thoughts exactly, if you're ok living like a vegatable, I won't judge, you do what you want to do. Me, I don't. I should have a choice to do whatever I want.
LikeReply3Oct 15, 2016 5:18pm
Raba Marti
there seems to never be any focus on what the patient wants. mind your own mind.
LikeReply4Oct 16, 2016 2:21am
Melanie Jean Wills ·
I feel confident that there are enough safe guards in place to prevent "shame relief" at this time. Actually, so much so that I think we're preventing cases that should be allowed to proceed. In time hopefully we can continue to protect the vulnerable while freeing up access to those who need it, which should include terminally ill children and non-responsive to treatment mentally ill, as well as early requests for progressive dementia patients, in my own personal opinion.
LikeReply6Oct 15, 2016 10:45pm
Sarah Marshall
Many people are very worried there is a dark side to Assisted dying and I think we are just beginning to see what that is. "Shame relief" is a very interesting perspective. Personally in the end of life People generally have a lot to say and knowledge to pass on to the next generation. Caring for people who are not independent is one of many opportunities to learn about them and their life. Canadians also love products and inventions to help facilitate independence for those who can't control their bodies. We have so many health related products to make people comfortable. I don't think this practice should be available in regular hospitals – the drugs are also dangerous. I think this practice should occur in a secure protected center like in Switzerland. People should also have to go to court like here. And “doctors” involved in this procedure should be carefully screened with this as a speciality.
LikeReply3Oct 16, 2016 7:18am
Rose Schulenberg ·
Works at Shalom Manor
Oh, so you want to free up access to euthanize people who are vulnerable - terminally ill children, mentally ill people, and early dementia patients. Why should anyone have the right to make that decision for another person?
In the Netherlands, they are now killing babies who have a disability - legally. That is the slippery slope.
What about the elderly who will start to feel like they're a burden to their family? do you know how much a Long Term facility costs? What if they don't have the $? and then they feel guilty....
Do a search on euthanasia in the Belgium and Holland and you'll see how far things have progressed there already.
LikeReply3Oct 16, 2016 7:52pm
Patricia Wolfenden ·
You are wrong. You and yours must have great insurance, because that's what it takes. Or you must not work in any part of health care in the 21st Century.
#thesystemisbroken
LikeReply1Oct 16, 2016 11:31pmEdited
Joanne Rochester
Patricia Wolfenden This is a Canadian paper, so the 'great insurance' issue isn't really the problem.
LikeReplyOct 17, 2016 1:19pm




Julie Ali · 
I doubt that anyone cares about handicapped citizens in Alberta who live in continuing care. Families have to listen to the government of Alberta talk big about the care of our family members but the reality is quite different.

After experiencing five years of turmoil in the long term care system, I have no belief that the system will recognize the rights of the disabled citizen-- to care of any sort--much less adequate care with the essential supports/services necessary to enable them to live full lives of dignity---because it is simply easier and cheaper for the system to let handicappedresidents struggle on their own and finally die prematurely.

Why else was my handicapped sister left without an integrated care plan for years in long term care? Why did she lack the supports and services such as help in the form of a compliance program to use her BIPAP machine until I became involved? Organizations tell us that they have to respect the decisions of citizens without insight to refuse treatment but this is nonsense. If you are a handicapped resident without the abilty to manage your care, then there needs to be help provided. But it costs more to provide this extra help and the reality is that no one bothered to institute a compliance program for my sister until I got involved. Instead of assisting her with her profound deficits the system characterized her as non-compliant and after frequent hospitalizations, the Grey Nuns Hospital doctors unilaterally decided on a do not resusciate order (DNR).

I went to three health ministers--Mr. Horne, Mr. Mandel and Ms. Hoffman to get this order reversed and to raise the issue of DNR orders imposed on citizens without insight despite the presence of a personal directive that required full resuscitation. There was no attempt made to do the necessary investigation of her problems by the system. I had to do the data card downloads to show abuse in two incidents where staff failed to put on her BIPAP machine. This was no simple case of non-compliance but of system-wide failures in care that no one is interested in investigating because it shows that the system failed a severely handicapped woman. It is all about cover your butt in Alberta rather than acknowledging adverse events and ensuring that they don't repeat.

What we have in Alberta in my opinion-- is a situation that ensures that handicapped residents are suffering a loss of dignity, health and their rights. The level of care that is in place due to lower staff: resident ratios ensures that residents have to cope as best they can with substandard services, less staff time than necessary to meet their needs and under-trained staff. Without advocates, these handicapped citizens are not only prone to choosing death over substandard living conditions if they have insight but also to being prematurely terminated if they lack insight.

We have to listen to politicians speak compassionately about the needs of complex care patients like my handicapped sister without actually doing anything to resolve these problems other than perhaps dumping them in SL4 facilities where their care needs are not met. Unfortunately, families and residents have no control over placement decisions. We are not given a plain language document to explain for example the rationale for a downgrade from long term care to SL4 status. We are not given an independent appeal process to challenge such downgrades but must go through an AHS appeal process that I have no confidence in. I believe such an internal AHS appeal process is simply a way for the system to tie up loose ends and shut down any complaints in a politically expedient manner. Even if by some miracle the situation is that the resident is put in long term care there are still problems as per our experience.

The long term care situation is only marginally better than the supportive living placements in terms of staff training and mandated staff requirements. However, in my opinion, the level of care offered to residents in long term care is still inadequate and staff:resident ratios are not good. If this situation is present in long term care where some control of such matters is present thanks to the Nursing Act you can imagine the situation in supportive living situations.

The recent report by The Parkland Institute indicates that the broken promises of the NDP folks continue the broken promises of the PC folks. The emphasis by government is on cost savings, downgraded services in supportive living placements, privatization and an abdication of government responsibility. It is all about the money.

https://d3n8a8pro7vhmx.cloudfront.net/.../losingground...

Losing Ground

Alberta's Residential Elder Care Crisis

In 2016, Alberta had 377 more LTC beds than it did in 2010, or an increase of 2.6%. The number of DSL beds, on the other hand, increased by 4,770, or an increase of 92.3%.
LikeReplyJust now
Carolynn Sharp · 
As a nurse, I am grateful for Ms Frazee's well written succint article which clearly identifies the new problem for medical people. Patients are very vulnerable and too often do not have medical people take the time to understand their deep needs. Excellent point, Donna, that this subject should only be opened by the patient. But going beyond that, time must be taken to determine the reason and feelings of the patient bringing them to even consider assisted suicide. What has been done to provide them good 'assisted living' in the full sense of the word?
Laura Bunky Shaver
It all comes down to the money the person has available. My Mom had Alzheimer's and when she got to the point where I had trouble caring for her we looked for a nursing home. By law all nursing homes had to have rooms available to people without enough money to afford 4 to 10 grand a month. The very nice ones had waiting lists years long. Once I found a recommended "nice" one that would take her, and admitted her, it was 6 months before I returned her home and quit my job to care for her. You can not blame someone who does not have the option of paying for a decent place for wanting to make use of the law. You can not legislate a "really caring" nursing home. The government supplies the money, big business makes the money and the "little guy" suffers.
Jennifer Robin
Exactly! If compassionate care isn't available then assisted suicide becomes less of a "choice."
Carolynn Sharp · 
I erred in referring to the article by Ms Frazee, when it was by Joanne Laucius.
Donna Flick
A big "thank you" to Ms. Frazee for her comments - and her courage for continuing to make a contribution to the world of disabilities. I think it's expedient that the individuals supposedly providing care in all our medical institutions have some serious conversations about what that means: they should first ask patients requiring long-term care what that means. And we should all agree that we must spend what is necessary to provide that care. Another important point: a conversation about assisted death should only occur between a patient and a physician at the patient's request. No medical professional should ever start this conversation with any patient.
Penny Russell Leman
This article presents a point of view and concern I have never heard addressed during any debates or discussion about assisted death. I love all the comments made about this article - all have very good points. And especially that from Donna Flick: " a conversation about assisted death should only occur between a patient and a physician at the patient's request. No medical professional should ever start this conversation with any patient". I would venture to add that the conversation should not occur between a patient and anyone EXCEPT at the patient's request.
LikeReply17 October 2016 16:56tober 2016 16:56

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