People on Ventilator Crises in Alberta - Is the CHA attempting new beginning?

At a meeting I attended last September I learned that the place of living was the only facility in all of Alberta where somebody on ventilator to the. I have only been the ventilator for two and half years but this revelation came as great a shock.

History:

Oct 1995 the Millwoods Good Samaritan Assisted Living Centre opened after GSS made a bid to build and house the last vented residents from the old Abrehart Polio Centre. The bright cheery building offered a homelike environment. All unit were private (very good for infection control) and were in the style of bachelor style with kitchenettes and private bathrooms. The common areas were designed in a county manor style. One of the best features was that food was delivered in a resultant service of the dietary aides, were like waitresses with a full menu of selections. Some were very happy to move here but there were a number of issues that were never properly dealt with.

It has been indicated by many that the Good Samaritan had no idea of what the undertaking of the project meant but seemed to have good intentions, however the GSS had many surprises in how to care for this very unique clientele and grossly underestimated the Quality of Life issues and safety process involved. The building layout itself was designed for other assisted living centers but offered many challenges in safety and design issues, On the positive side, The GSS involved the residents and staff in management issues such as policy making, hiring of staff possessions and some budgetary issues (This is no longer the case as of 2003)

I moved into Millwoods Centre in January 2000. I found things extremely difficult and staffing to the point it was unsafe for everyone especially those ventilators. I became extremely anxious and was severely clinically depressed (I had bouts before but never like this.) This seemed to be the norm and almost all my friend needed to be medicated. My fears were well founded as it was very common to wait 1 ½. It also did not make it any easier watch many of my GSS Friends die. I wrote a paper on this two years ago and will be happy to share this with anyone who has not read this, so don’t need to rehash it I was not trached and ventilated until spring 2003.


Good Samaritan’s policy has always been to only accept residents who can push a call bell and/or “Telecare” (A LIFELINE unit dials an operator at in my case the Good Samaritan central office who dispatches 1 - 3 designated helpers to assist to check on that person. In my case the facility where I live is my only necessary contact otherwise living in the community a family member, landlord or friendly neighbor within the area of residence with a key.. Telecare are also able to contact 911 if need be and have important information to relay the emergency team) Now 80% or more residents have progressive disorders ALS, MS, NMD, Parkinson’s etc. Spinal Cord Injury, OCPD, etc. Although most of the residents are under 65 the can progress quite rapidly to the point that they can no longer press a button, so is not possible to use in an emergency. They were still aloud to remain at their own risk. Families were kept informed and staff did everything possible. Some family had to spend 5 – 24 hours peer day to help supplement care due to insufficient staffing However, the CHA and the wife of a man I will call Nick pressured the GSS to break the call bell rule as long as the CHA provide the man a private attendant.. This created an uproar namely with resident council and the exhausted family-member-caregivers who were fighting for more care all along.

That fall GSS announced at the Resident/Family Council that the only overnight RT position was discontinued, The RFC decided that a meeting for all the parties involved was necessary. The Meeting was very heated but GSS held there ground. Part of the problem was that the staff were afraid to call the overnight RT because they were warned not to unless it was life threatening. Overtime would need to be paid out. So any staff was reprimanded if the event could have supposedly been handled by the on duty RN. Some situations are difficult to predict and often the RT was not called when they should have. The statistics did not reflect this. So the ON RT could not be justified. There were a few rumored court cases at the time shortly before I moved into the center.

There have been many accidental deaths here since GSS has pulled staffing since the Centre opened after staffing cuts. 3 years ago after cuts were made a man that I will call Mr. Black of having his hose disconnect while he was in the washroom and died after 20 minute of being alone. A MAGOR INVESTIGATION was then conducted by C.H.A.. The GSS was then ordered to hire more staff. Mr. Black died due to insufficient staffing because they took too long and were busy at the time he was disconnected. Prior to this which began shortly after Centre opened. The Good Samaritan society made heavy staffing cutbacks against the recommendations of the pulmonologist specialists and Resident Councils.

I was president from June 2000 to June 2005 (and still act as co-pres June 2006) until Who eventually left there consolation to the GSS .So Capital Health gave GSS an ultimatum to hire more staff and a bit more money. Things got better or it may have affected my choice to use a ventilator when I went into respiratory failure.

Resident Councils were told the new injection of more funds after Mr. Black’s death were never enough to support the demands of the CHA. The also want a Pulmonologist back on consult. But GSS cannot find one in there Price range. In a request for more money GSS has been refusing more residents on ventilators for over 2 years and has been filling empty ventilator unit with other respiratory residents. There are only 8 out of 18 people of ventilators left. A long time non-ventilator resident after hospitalization was made to wean off the ventilator before being aloud home.


Present situation:

Good Samaritan have stated all along that they spend more on care then they receive from the provincial government. They are $7,000,000 in debt. (In fact, cuts are currently being made at this time he death benefits. So staff are picketing outside. GSS claims that their benefits are the largest in all Alberta) They do try to give quality care. The staff on most part give excellent care. However cannot give the care needed with their current resources. The pulmonary specialists which are mandatory refuse to consult for less than their usual amount due to lack of trust of GSS. It is impossible to build a bigger ventilator program here. It is a logical to expect GSS to need to cut costs. They always say not at the sacrifice of quality care. This is not possible, as those of us living on the frontline know from experience.

The original Abrehart was where Gary McPherson the first chairman of “The Premier’s Status of Person’s with disabilities lived for many years with a ventilator. He had Polo as a child but as an adult championed for rights for people with disabilities and awarded the “Order of Canada” for his work. He married and moved away from the Abrehart Centre but kept in contact with his comrades who have all passed away after moving to Millwoods Centre. I became acquainted to Gary at an inclusion conference February 2004 (I was ventilated at the time) who knew of me through his past attendant who happened to be on of my students. I also met many of Gary’s Abrehart. My new alliance with him as h has been a real advocate and friend throughout this past year . I contacted him shortly after the decline in the number of ventilated residents and heard a number of rumors regarding the move of the resident on ventilators.

We have as a result been through many facility managers. The chaos has caused a high turnover. The latest manager rules with an iron hand and has NOT been an advocate. Alice Sears her supervisor (Director of Operations) has been a tremendous support. but has had her hand tied. Neither of them had work for GSS at the time of the man I will call Mr. Black’s accident . The investigation by The Capital Health Authority and Alberta Health and Wellness.

I am very involved with Capital Health for a few weeks because Gary McPherson had started calling around and talk with . They are having a big meeting with CHA, Good Samaritan Society , Top Pulmonologist. I wrote Iris Evan last year after a Best Practice Nurse from Norwood spent 3 orientation days with Anju Sharma on trach/ Vent management. This sparked many rumors and much curiosity among the staff and residents at GSS Millwoods Centre. Initially, I was told that there were no plans to move us to Norwood.

I had a meeting with Rob Lougheed in early September (Alberta’s Minister assigned to disabilities) a few months ago and invited Teren Clarke and a few others. We were discussing issues faced at the Assisted Living Centre including Modified AISH a few moths ago to at Good Samaritan Society Millwoods Centre. And Teren from CPA , Alberta Disabilities (former MDA). Alice Sears and Carrie Corsiatto from GSS, Carmen Binder, from CPA Brad Meakins another residence who is vented is also very well spoken. Another resident from Lynnwood was there also to speak on Modified AISH. Before the meeting I calculated the number of ventilator resident spot we had 16 and was blown away that

Teren from her experience with The Muscular Dystrophy Association of Canada has a great deal of background in respiratory issues and had work on The InSynchrony study regarding “Progressive” Disabilities (MD, ALS, MS, PD) was able to speak on all the issues including Health, Safety, Quality of Life and Community Participation. We explained that there were minimal programs for those who were on ventilator. There are no rehabilitation programs for people on ventilators. Even the Glenrose will only take people on ventilators. Many people I knew of decided to go back to the U of A to be weaned off the vent in order to get rehabilitation. This had had some sad results. I did not know that a few selective chosen have the option of going out of province to BC for rehab.

Teren was very informative and Rob received a great deal of information. Although Gary was not at that meeting he followed up after I wrote Rob and thanked him and quickly summarized key concerns regarding nor AISH and large holes in system for people who are ventilated in all areas from safety to quality of life.

Gary McPherson followed up on some of my new information. We had spent much time in correspondence discussing that the Alberta Government has no other Trach vent program and there are 0 rehabilitation facilities for this population. Gary was instrumental at speaking on behalf of the residents that may be moved when he spoke to Marguerite Rowe and Rob Lougheed. We knew that despite G.S.S.’s attempt to retain a pulmonary specialist and were aware that CHA would want us (with ventilators only) to move. If this was so then it was of utmost importance the we the residents contribute fully in the development of the unit.

It was insistent that I discuss this situation with my fellow 8 residents and staff. I wanted to gather as many concerns as possible as I am currently the only person with a vent on resident council and wanted to reflect everyone else’s concerns. I talked with most residents and a few staff. I tried to be frank with pros and cons. GSS was not happy that I eid this and I received a nasty letter. I explained that the problem stems from the fact that there are many holes in the entire provincial system in the different level and stages of care
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Because I have been so vocal about “nothing about us without us” Marguerite Rowe personally called me to assure me that even though a move was immanent that the residents involved in all aspects of the new program at Norwood Capital care Centre. Helene Rust met with me and we discussed concerns and quality of life suggestions. The final meeting was held on October 12. The CHA kept their promise and a meeting was held with all the respiratory residents. Bernice Y and Joanne Duster Becker from the GSS board, Sarah Miller GSS Millwoods Manager, Helene Rust from the CHA , Jennifer CCC Norwood Manager were all present along with all 8 of the remaining 8 of the residents with ventilators the 2 residents with only tracheotomies and a few residents with general disabilities.

The announcement was made that all 8 of the residents who are ventilators will be moved to Norwood Capital Care centre in 6 months (this would be around April; this includes 2 residents who only use a ventilator nocturnally. The decision to make this move came directly from Sheila Weatherill herself along with Neil Wilkinson at the meeting. Although I had tried to warn as many residents as possible the news was still shocking and very upsetting. Many I suspect were in denial. The 2 residents who are trached without ventilators will remain here at Millwoods for the time being. There will be a 16-bed unit

Tunnels to the Royal Alexandra Hospital, the Glenrose Hospital, and The Hys Centre connect Norwood Hospital; would give total access for medical and rehabilitation. As well there are many amenities such as big machines, restaurants, and gift shops, which are not available to the Good Samaritan by way of tunnels and therefore be easier to access during the winter months.

The original Norwood Center was a traditional long-term care center. The residents were mostly elderly people who needed full care. A few months ago and announcement was made that Norwood to be renovated and turned into and complex care center. So many of the people currently live there will be moved or have already moved out. In fact they want a clean start on a nursing model and want us to be involved in the developing of the model. I had read the report from Alberta Health and Wellness called “The Seniors Report - What We Know and Heard" published September 2005 and thought that this could in fact be
opportunity.

I have insisted from the very beginning that the residents MUST have a great deal of input into this project. The people from Norwood really want to make this situation work for us. In fact I do not think the plan on making this into the usual traditional long-term care center and seem to want to make it. The Capital Health Authority has agreed that they would cover any costs that would be associated with the move including moving track-ceiling lifts and any other of our belongings. All the rooms are private of different sizes all having private bathrooms and so rooms will be allocated on need rather than costs. The social workers from both facilities will work together to ensure that the costs per month will not create a hardship. People on AISH will not be affected as. Internet and cable may even be included. The manager was once a dietitian and has some very good ideas regarding our concerns about food. I pointed out the food is more than just nutrition it, brings quality of life and is a social and cultural importance.

I personally have very mixed feelings about this I feel quite torn about this as this is a very lovely building and I have built a home here. However I am definitely aware that the Good Samaritan does not have the resources to adequately manage this program and people’s lives are at stake. Although that many people have complained over the years about like a safety and other issues regarding the Good Samaritan Mill Woods Centre, it has become home to many. There were many concerns of what we may lose in regards to our excellent staff, restaurant style meals, and homelike environments. Some of us still want to our kitchenette One couple is mostly concerned that they have a hot plate and a cook it a little room for their family. Norwood is definitely going to try their best to accommodate everybody's issues. At our meeting last week we made it very clear that it was a priority for us to remain with the ability to direct our own an care. It also sounds like we will be able to bring most if not all of our things, including our furniture countries, beds desks, tables and whatever we happen to have. They were very interested in our suggestions and will do their most to accommodate. However many decisions about these details are far from being finalized.

For those of us that are still left have never had to deal with the real reasons behind the move. Reality set in for me that weekend when I had what I saw was a hear-attack I had to go by ambulance to the Grey Nuns Hospital. Let me first say that in my entire six years living at the Good Samaritan Mill Wood Centre I have never been ill enough to go to the hospital; therefore never asked to go. In fact when I had to go to the University of Alberta Hospital I didn't even know I was sick and had to be told to go after my doctor received some bad test results.

My illness on October 15, 2005 turned out to be gastritis along with low potassium. I had known that the Grey Nuns was not equipped to handle many of the cases from my center over the years. But reality set in when my doctor was on all week, wanted to admit me to the hospital. She had a bed available for me on her unit however due to my ventilator was not allowed to be admitted on that unit. I had been very sick that night and she wanted to make sure that I potassium was at normal level and that I did not contract pneumonia as a result of complications due to my gastritis. I was not sick enough to be admitted to the intensive care unit and the normal cases would have been admitted on the normal medical ward, however she was forced to send me back home. Although the Good Samaritan Mill Woods Centre has excellent staff they are not able to give intravenous fluids unless it's a dire emergency. There is only one registered nurse on duty at all times and know doctor in the house. My doctor could have kept me in emergency, however it is very difficult to do so and the stretchers were so uncomfortable I was in a great deal of pain.

This is been one of the reason for the high mortality rate at G.S.S. Mill Woods. Many times people are ventilators were very ill but could not get a bed at the hospital in. Later that next week my doctor asked me to advocate this to the other residents. I gave her permission to use my story as an example when other residents discuss with her their distress about the move.

Norwood also has a This Council but it sounds like we also may have a Council specifically for the 16 bed ventilator unit for people with ventilators. There are many issues that are yet to be ironed out with the Norwood Center regarding the move with their definitely very open-minded. We have had three meetings so far with Norwood with the entire group and the promise to meet with residents individually fairly soon. We will be having meetings regularly to iron out the issues that happen to come up but the move will definitely go ahead. My only hope that things are not too “good to be true”. Most of the residents of yet to come around to the idea of moving. So, I certainly hope the promises from CHA are kept.

So far things look positive and I think the other residents will come around if this happens. I honestly hope that this is not an end decision but the beginning. Most of the new Norwood is a transitional Centre for people to move back into the community and they surely hope that they intend on moving people back into the community in their own either homes or group homes. Many are worried that we are moving back toward institutionalization and people with disabilities being shut away as in previous times. However this is not seem to be the case, as so far as I have. I feel confident that Gary McPherson would continue to fight for us if this were the case. This would be something that will continue to advocate for. At least now there is a chance for people who use ventilators to get some sort of rehabilitation. It at least looks as if this is the case. This Centre has great potential for reintegrating people who use ventilator back society but time will tell. It will definitely of show the provinces motivations toward people with disabilities and a little while since this is the only facility in all of Alberta that will care for a person on a ventilator long-term. Perhaps if this project is successful it could be a model for the world who is moving towards euthanization ( http://www.notdeadyet.org ) as in the United States and in the Netherlands. I strongly believe that one can have a quality-of-life and live on a ventilator. So I hope that this project reflect this. I still have to bring up the famous question; “How are they going to include us in the community and What plans are in place to do this? There will be a great deal of work ahead but at least “it seems” they are on the right track…so far. I am at this point optimistic.