Friday, March 17, 2017

I go back and forth in this great crowd of workers and I am curious how they think about the handicapped woman that they worked with. 1) There is the doctor who looked after Rebecca for over 20 years. He dumped Rebecca when I requested a second opinion. He told everyone that the family requested that we close her file with him. It's pretty amazing how a second opinion request can be seen as a request to close a file. 2) There is the second doctor who has seen Rebecca for ages at the Medicentre. When Rebecca entered the Villa Marguerite he dumped Rebecca as well saying that he had not seen her for five years. This was odd since we had seen him while Rebecca was at the Good Samaritan Extended Care at Millwoods. 3) There was the doctor at the Grey Nuns Hospital who told us that my sister had not wanted to be intubated. We disagreed with her. Yet there was a phone call from the Grey Nuns Hospital to inform staff at the long term care facility that Rebecca was DNR and that the family were agreeable to this decision. This same doctor apparently then tells the psychiatrist that an obviously incompetent person was able to make a decision about no intubation when she was not. 4) Meanwhile there are supporting doctors who agree with the Grey Nuns Hospital doctor about the do not resuscitate business. Apparently there is only straight line thinking in this group of doctors. You either follow the dogma of a tracheostomy for better compliance or you are downgraded in terms of resuscitation status. So odd. Why can't we take a zigzag and go for the compliance program? Well according to the folks at the UAH -this is something that would stretch the system impossibly. Folks would have to do more work and think outside the straight line to that zigzag line and we can't have that. Besides the acute care doctors cannot dictate to the continuing care providers how to provide services even if the compliance program would prevent repeat visits to acute care and be less onerous a burden to the patient. 5) The chatter that yet another doctor offered was that Rebecca was a "palliative" case in 2014. So odd. The palliative case is now alive, is able to function without carbon dioxide narcosis on a daily basis and only needs adequate oxygen monitoring to ensure that she is not suffering from hypoxia induced confusion or carbon dioxide induced confusion.

Julie Ali
Just now
The failures in the continuing care and health care system with reference to severely handicapped citizens is a problem that families have to deal with by going public. Staying silent will not end the discrimination, the lack of services/supports and outright failures by the GOA to ensure that handicapped citizens are protected and cared for appropriately.
What we have in place is ignorance and failures to provide supports and services for some of our most vulnerable citizens who cannot navigate an impossibly prejudiced health care system that cannot deal with complex cases.
What is required is for families to tell their stories even if faced with retribution so that the systematic discrimination faced by the severely handicapped ends. We're tired of the lack of supports and services and we want change. The GOA won't provide this change.
Let the families of the severely handicapped be the change that is required.
Speak up families.

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Julie Ali
1 min
I have been reading about the attitudes of workers in the health care system with reference to my handicapped sister.
I go back and forth in this great crowd of workers and I am curious how they think about the handicapped woman that they worked with.
1) There is the doctor who looked after Rebecca for over 20 years. He dumped Rebecca when I requested a second opinion. He told everyone that the family requested that we close her file with him. It's pretty amazing how a second opinion request can be seen as a request to close a file.
2) There is the second doctor who has seen Rebecca for ages at the Medicentre. When Rebecca entered the Villa Marguerite he dumped Rebecca as well saying that he had not seen her for five years. This was odd since we had seen him while Rebecca was at the Good Samaritan Extended Care at Millwoods.
3) There was the doctor at the Grey Nuns Hospital who told us that my sister had not wanted to be intubated. We disagreed with her. Yet there was a phone call from the Grey Nuns Hospital to inform staff at the long term care facility that Rebecca was DNR and that the family were agreeable to this decision.
 This same doctor apparently then tells the psychiatrist that an obviously incompetent person was able to make a decision about no intubation when she was not.
4) Meanwhile there are supporting doctors who agree with the Grey Nuns Hospital doctor about the do not resuscitate business. Apparently there is only straight line thinking in this group of doctors. You either follow the dogma of a tracheostomy for better compliance or you are downgraded in terms of resuscitation status. So odd. Why can't we take a zigzag and go for the compliance program? Well according to the folks at the UAH -this is something that would stretch the system impossibly. Folks would have to do more work and think outside the straight line to that zigzag line and we can't have that.
Besides the acute care doctors cannot dictate to the continuing care providers how to provide services even if the compliance program would prevent repeat visits to acute care and be less onerous a burden to the patient.
5) The chatter that yet another doctor offered was that Rebecca was a "palliative" case in 2014. So odd. The palliative case is now alive, is able to function without carbon dioxide narcosis on a daily basis and only needs adequate oxygen monitoring to ensure that she is not suffering from hypoxia induced confusion or carbon dioxide induced confusion.
6) Let me not forget the night nurse who told me my sister is too time consuming.
7) Or the nurse who was rude to EMS staff and told them that my sister had to be checked every hour.
It is clear to me at least that the system does not handle handicapped individuals very well. I imagine if my sister was alone she would never be able to explain to the world the reason for her non-compliance with a BIPAP machine. Looking through her files perhaps I can speak for her:
1) No attempt made to create a structured program to ensure that she got the right levels of drugs to ensure compliance.
2) Without the right level of drugs there was no way she could even attempt compliance.
3) I stayed with her at night and I saw her take off the mask in her SLEEP. She was not being deliberately non-compliant in this case. It just was an automatic thing. Her hands came up and the mask came off. This is something you can't control and this is why she needs hourly checks.
4) If other residents at the facility were getting hourly checks why did my sister also not get hourly checks? I see in the PPIC report that the excuse was that the other patients were not as high needs as my sister but really what has high needs got to do with fairness? If there are others getting the hourly checks but not my sister why was there discrimination in oversight?
5) Why were there no data card downloads after all hospitalizations?
6) Why no pulmonary specialist involvement with the problems seen?
7) Why no review of the medication problems contributing to the compliance problems?
8) Why no red flags with the folks at AHS despite all the paperwork associated with the long term care system in the form of Inter-RAI reporting? The reports are filled in with all the hospitalizations and yet no one at AHS or Alberta Health flagged these multiple visits? Why then bother to do these Inter-RAI reports if no one is checking up on the system?
9)Why was family not told of the extent of the problem? It is mind boggling to me that everyone knew of poor compliance but no one told us she was getting an average of less than an hour of time on the machine for YEARS. What the heck?
10) There is a compliance program now. It is not less than an hour per day of use. It still needs improvement with day time use of the BIPAP but it is gradually getting to the point where my sister is now able to function without carbon dioxide narcosis and hopefully with enough oxygen to have her brain function.
The pathetic nature of the system is before me. My sister could not have told me any of this junk. The medical file is telling me what my sister could not tell me. The data card downloads from the BIPAP machine tell me what she cannot tell me. The nursing notes are telling me of what she went through that was in my opinion--avoidable with the right supports and services in place.
So this raises the question--of why these supports and services were not in place. Why did the doctor at the UAH in 2014 think I was asking for the sun, moon and stars to have a program that took into account my sister's severe deficits? Why can't she have a program that is adapted to her? Why is this a luxury when we have billions of dollars being paid out to power companies for no damn reason in Alberta? Why is it that the most vulnerable citizens in Alberta are stuck with junk while the elite get the biggest payouts?
I will tell you why.
It is because families have stayed silent out of fear, grief and horror.
It is because the severely handicapped have no way to tell their stories.
It is because the system is stupid, is full of concrete professionals who think the handicapped citizen is disposable and label her -Do Not Resuscitate, Do not intubate, no ICU, palliative and junk.
When will this stuff end?
When we speak.
Speak up folks. Speak about discrimination, lack of rights, lack of services and supports and how asking for anything is considered more money down the drain rather than a necessary business. Speak about how families ask for things like an hourly check on a family member and that question is left unanswered by the facility. Speak about the ways in which doctors denigrate the family trying to save a family member with a DNR. Speak about how doctors dump patients while covering their butts. Speak about the disrespect, the lack of kindness and the failures. Speak.
Tell the stories of your handicapped family members. And when you are ready write the story out in a book so that there is a record of the failures of the government of Alberta in the care of our most vulnerable citizens.

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