Friday, March 31, 2017

Alberta Aids to Daily Living Respiratory Benefits Program Policy & Procedures Manual July 1, 2015 This program requires compliance to the use of the BIPAP and so far we are improving on the current compliance. I believe an hourly check at night and day time use will ensure that Rebecca does not have the problems encountered previously with carbon dioxide narcosis. It is amazing what a care plan with accommodations for the disability of the resident will do for the resident's compliance. What is required is for such accommodations to be put in as a matter of course and not requested over years to ensure they are in place. It's all about the dollar, the dollar bill yo! And of course staff and family training. We all need to work together for the health and safety of our most vulnerable defenceless citizens. If family will not do this work, I guess they won't get the required helps they need; even if we do the work it still takes us until we get the medical file to figure out where the problems are.

The sun is bursting out of the skin of night.
I am in 2014 at the UAH where the doctors are all yapping about the personal directive.
If you have issues with cognition /insight folks want to immediately enact the personal directive. This is odd to me.
Why aren't we conservative about the need to make folks incompetent? I guess the severely handicapped are seen as incompetent for the most part and the system wants someone -the agent to be in charge for their health care needs.
This is again odd.
If we have a supported decision making agreement with the patient this means we help her decide. When it is a life threatening situation then the system is supposed to follow the Personal Directive requirements for Full Resuscitation.
But because of the premature attempts on my sister by doctors in 2010, 2013 and 2014 with the doctors in 2011 still deliberating over the DNR orders, it was clear that there was a system wide failure in ethics and professional duties among various doctors at the Grey Nuns Hospital and the UAH.
What this meant for our family is a precarious situation where we could not be sure if an emergency trip would result in a refusal of ICU services at the Grey Nuns Hospital.
We wanted Rebecca safe and we thought her problems were due to the drugs being used. Some of the problems were drug related as the drugs were sometimes not at the therapeutic level required. But the main problem was she was not getting enough time on the BIPAP to benefit from this ventilation. At this time we did not know how brief was her time on the BIPAP machine. The records I have from 2010 indicates minutes of use. Wow.
Then there are some notes from 2011 indicating an hour or so of use. We have the notes from the UAH in 2014 indicating that day time and night use of the BIPAP is required. And yet when I go look at the BiPAP results from 2014 -for the entire year of 2014-- after I got the compliance program begun--the average use was 2 hours and 22 minutes.
For 201 days of use-she had 105 days with device use.
She had 96 days without device use.
This is her record from 2014 just before she got evicted.
What about in 2010?
For the days between February 10, 2010 to July 19, 2010 - a total of 160 days. She had 135 days of use and 25 days where she was not on the BIPAP at all.
Average use is 3 minutes.
Cumulative use for 160 days is 8 hours and 57 mins.
So I ask myself --could this poor use of the BIPAP be responsible for some of the hospital and emergency visits?
I was told there was poor compliance but no one told me that there was only 3 minutes of use per day.
What the heck?
What was the follow up to this poor record of use? A managed risk agreement. The facility simply makes an agreement that outlines the risk of non-compliance.
No compliance program is in place.The RT talks to the specialists but I don't know what the responses were from the specialists. They have yet to hand over their medical records.
Yet at the Villa Marguerite, we have the same patient with compliance on a daily basis. It's hard to understand. Why is it that Rebecca has a program now that ensures that she is on the BIPAP every night and sometimes during the day when needed but this program was not possible at the Good Samaritan Extended Care at Millwoods from 2010 to 2014 until the very end of the stay when she was compliant with a lower level of oxygen rate (to maintain saturations between 89-94%)?
Rebecca has not been to the hospital or emergency during 2016-2017. Sure she has had some carbon dioxide buildup events but the BIPAP trial has been sufficient for now. She now has a POC (portable oxygen concentrator) which has not eliminated the problems with having the machine off when she is confused but at least I no longer find her at high oxygen settings any longer. It's more likely that the setting may be too low at times for her hypoxia.
In addition her mask is washed and she has not had a single eye infection. She does not ask for pain medication for the most part and she is able to go for periods of time without peeing all over the place.
The staff monitor equipment. If a mask is required it is ordered from VitalAire and got to her immediately; we no longer have to wait for ages to get a mask. Here are some examples of what Rebecca went through to get mask and machine changes / repair in the past.
1) Mask changes took too long/ supplies are asked about
a) Mask change in 2011 took from November 24-28, 2011.
b) Mask change in 2012 takes from May 14-17, 2012; then there are more problems and the RT gets a full face mask. Then the BIPAP has a problem. The RT is told that the client is not using the BIPAP when how could she use the BIPAP when the mask was broken?
May 16, 2012 0912 client @ report this am RN told that client “did not” use BIPAP.
RT checked client @ 0720 hr SAO2 94% mask broken RT from medigas just brought a new part for mask now able to do proper BIPAP by RT
Days off the mask from May 14-May 17, 2012
New part bought for mask bought and mask is reused until May 25, 2012 when the mask is not being used as it falls apart. I saw the range of masks being used and they were not the full face mask Rebecca needed to wear.
Meanwhile when is the RT informed?
RT not informed until May 28, 2012
So between May 25, 2012 until May 28, 2012 she had no mask.
Here is what the RT says:
May 28, 2012 0849 RT informed @ morning report client not using BIPAP due to mask keeps falling apart RT went to room attemted to resolve mask fitting problem but could not solve this issue will call Medigas & try full face mask hope fully client will tolerate she must be on BIPAP @ night by RT
May 28-got a new mask (full face mask)
May 29??? Bipap not working
May 30, 2012-Bipap working
Jun 30, 2013 2105 Resident sister Julie was in to pick up Rebecca around 1600 hrs. Writer informed her about the Bi-Pap tubing. They left the building. Rebecca was back around 2045 hrs accompanied by Julie She told writer tha she has e-mailed Manager. She was asking about Respiratory Therapist. She is aware that writer had a discussion with day RN She said she will call tomorrow by RN.
Aug 19, 2013 1358 Resient’s sister Julie approached writer to ask about tubing on her BIPAP that was to have been replaced and she was wondering if the necessary parts had been ordered. Writer agreed to follow up with the Unit Clerk and Respiratory Therapist by RN
Dec 13, 2013- mask in pieces; finds missing piece to mask; several different masks; no mask fitting since 2011; back up mask necessary
Feb 19, 2014-mask problems :Feb 19, 2014 1350 At 0830 writer went o room of resident where she is getting ready to go to appt. Writer and sister looked through the drawers to see if parts for the existing mask can be found. Noted several different mask types in various conditions but unable to assemble any to the satisfaction of writer or siste. Writer suggested to sis ter that all old masks should be removed and a new mask obtained with a spare for the med room in case it is needed. Sister emains uupet and wishes to talk to the SW or CM by RN
March 11, 2014-unable to find liner to bipap; found replacement mask, which was disinfected and cleaned with sunlight soap. Headgear washed. Will go to Vital air with sister tomorrow, possibly for new mask RN
March 12,2014--no liner for bipap; mask fitting and replacement mask; hose in pieces;problems with BIPAP machine (first mask fitting since 2011)
March 12, 2014 -new machine provided; I ask for an inservice for staff.
2) Machine fell to the floor repeatedly as she moved to get in and out of bed:
Resolved at the Good Samaritan Extended Care at Millwoods in 2104 by gluing a plastic tub in place and putting machine in the tub. No one thought to do this simple accommodation.
Since then no machines broken. All the staff would do is record--resident broke machine.
3) Machine problems
a)June 2 until June 7, 2011 to fix bipap on auto off.
June 7, 2011 dad calls Manager of site to get fixed.a)
b) December 28-Dec 29, 2011 Machine broken
c) November 19 to November 24, 2014 High priority low pressure signal on machine and no one responds to the need to get a loaner machine until the last day.
4) Mask and machine costs. It appears that the long term care system does not know that there is a responsibility to replace the BIPAP masks on a yearly basis. The replacement of masks, hoses and cannula seems to be left up to the facilities to determine with their RT. I am also curious about the BIPAP equipment replacement. We had some of the machines replaced by dad but the ones Rebecca got in 2014 belong to the Good Samaritan Society or other public bodies. If the machine belongs to the organization they are responsible for records, maintenance and upkeep. If the machine belongs to the resident there seems to be no obligations to the resident other than warning them about problems seen.
5) So these are just some of the problems that were found in the medical records. The machine replacements are hard to determine and will need further review. Currently the BIPAP machine Rebecca is using is from Alberta Aids to Daily Living Program. The use of the machine requires compliance. The regulations for this compliance are stated here:
http://www.health.alberta.ca/…/AADL-Manual-R-Respiratory.pdf
Alberta Health

Alberta Aids to Daily Living
Respiratory Benefits Program
Policy & Procedures Manual
July 1, 2015
This program requires compliance to the use of the BIPAP and so far we are improving on the current compliance. I believe an hourly check at night and day time use will ensure that Rebecca does not have the problems encountered previously with carbon dioxide narcosis.
It is amazing what a care plan with accommodations for the disability of the resident will do for the resident's compliance.
What is required is for such accommodations to be put in as a matter of course and not requested over years to ensure they are in place. It's all about the dollar, the dollar bill yo!
And of course staff and family training. We all need to work together for the health and safety of our most vulnerable defenceless citizens. If family will not do this work, I guess they won't get the required helps they need; even if we do the work it still takes us until we get the medical file to figure out where the problems are.

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#GoodSamaritanSocietyLawsuit--My sister's case is one of resolution in the end. I have found the problems with the help of doctors at the UAH visit of 2014.
Without family and health care teams working together it is unlikely that residents in the continuing care system will get appropriate care management.
My sister's case illustrates the difficulties faced by severely handicapped citizens in the system.
What is required is for families to access medical records, review care and ask for changes to care plans.
Care plan changes will not be granted easily and will require physician orders.
In other words, you have to ask a doctor to get the continuing care system to do extra work. Most doctors will not do this as they are fully aware of the stresses on the continuing care system. Also profits have to be made in the private sector businesses.
But no matter what the barriers are --the family must ask for required services and accommodations to ensure the health and safety of the resident. I mean if the resident needs day time use to prevent incidents of non-responsiveness leading to falls I think this is only a proper care plan adjustment don't you?
But in Alberta--it's all about the dollar, the dollar bill yo! It might take you years as it did in Rebecca's case to determine that a severely handicapped woman was not capable of taking care of the responsibilities of her care and she needed more oversight and follow up.
A structured program is always best. And then being awake to small shifts in status.


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