Doing the right thing costs you big. it costs you money to defend yourself in court with a lawyer. It costs you the time of your life to spend doing a lawsuit. It costs you the peace of your family life. It costs you in stress of carrying the burden for years. And this is just what the system is counting on. It is counting on all these matters so that families give up. But why do we really give up? We're afraid to go to court and rightly so for the system in my opinion is not fair to the ordinary citizens who do go to court.But what is the alternative?
Do we let our family members in the continuing care system be subject to non-compliances that the government of Alberta is fully aware of and does nothing about until a critical number of families complain or the media gets involved?
Who is responsible for oversight of the continuing care system and the problems that are present?
Why do we pay for auditing teams, managers, health authorities, health bureaucrats and politicians when there are problems tolerated and accepted in the system because of the failures of all concerned?
Why? It's because of the silence of the people. We're too afraid to speak publicly and discuss these issues that need public discourse.
We're banned, our family members can be evicted, and guess what is at the end of the rainbow of retribution? Lawsuits.
It's best to remember that in Alberta the spin is super but the care oversight is not as super.
and although the night fell
before the day
and the rain poured down from heaven
although the past returned to me
I was not afraid
and I documented history
I told what happened to her
and I was unashamed
and although the night fell
before the day
I was loyal
I stayed by her side and I spoke
despite the lawsuit as retribution
I said the failures of the government of Alberta
and that of the health authorities to service her
I spoke of the premature termination orders against the personal directive requirements
and although the night fell
before the day
and the politicians made their self serving decisions
to pretend to the just society
I was undeterred
I said my sister is important and she deserves servicing
I said that she is not a second class citizen and she is not to be destroyed
I said that this woman was not to blame for her illness and you should all be ashamed
and although the night fell
before the day
and the lawsuit continues
I live my life with equanimity
for I have done the right thing in troubled times
I have spoken for the most vulnerable member of my family
I have decided on the way to be in the world
I told what happened to her and I was unashamed
NEEDTOBREATHE - "Multiplied" (Official Video)
People banned from visiting family in hospital demand provincial help
PAIGE PARSONS, EDMONTON JOURNAL 09.09.2015
Julie Ali, left, and her sister Sue said they are experiencing 'retribution' after complaining about the quality of their sister's care in a Good Samaritan Society longterm care facility.
PAIGE PARSONS / EDMONTON JOURNAL
An Edmonton woman says she is facing “retribution” in the form of a defamation lawsuit for speaking out about concerns she has about the quality of care her sister was receiving in a long-term care facility.
Julie Ali said her sister Rebecca Lee was evicted from the Good Samaritan Mill Woods Centre in February 2015. Rebecca, 50, suffers from various respiratory conditions. Ali said after raising concerns about care her sister was receiving, she was banned from the property and her sister was evicted. Since then, Rebecca has been lodged at Grey Nuns Community Hospital.
Ali said she is now being sued for defamation for writing about the experience on her blog.
“Why am I a threat to the Good Sam? … I’m not a threat, I’m not a newspaper,” she said.
Now Ali wants the NDP government to intervene to prevent health-care facilities from visiting what they describe as “retribution” on family members of patients for complaining about care.
Ali said it’s critical that family members are able to advocate for their loved ones without fearing repercussions, legal or otherwise.
“My sister can’t do this kind of stuff. I have to speak for her,” she said.
A spokesperson from the Good Samaritan Society was not available Wednesday afternoon.
Ali spoke to media at an event hosted by Elder Advocates of Alberta Society and was joined by several others who said they’ve experienced similar problems of being banned from visiting loved ones or having their family members evicted from care facilities..
Among those attending was Shauna McHarg, who made headlines last year for her efforts to compel Covenant Health to share documents that explain why she had been banned in the past and now has restricted visitation hours to see her parents.
In a precedent-setting decision that went against McHarg, Alberta’s Court of Queen’s Bench ruled the province’s Health Information Act protects any information broadly connected to a patient’s care, even if that information is about another person.
McHarg’s parents are both residents at the Edmonton General Continuing Care Centre.
She said she also tried to access the information through a freedom of information request, but said she was told by Alberta Health Services in June 2015 that the records had been shredded.
Covenant Health said Wednesday that it is extremely rare to restrict a family member from visiting unless it is a case where a resident’s well-being is compromised. Spokeswoman Rayne Kuntz said the parents’ agent is McHarg’s sister and that she is in agreement with conditions on McHarg’s visitation.
“Shauna is able to visit her mother and her father under the current visitation conditions,” Kuntz wrote in an email. “Both Covenant Health and the agent have provided reasons for the visitation conditions to Shauna previously.”
McHarg said she has sought a meeting with Health Minister Sarah Hoffman to discuss her concerns, while Ali has reached out to her MLA.
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?
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.