Julie Ali – Family have to be the guard dogs of their most vulnerable family members.

Julie Ali – Family have to be the guard dogs of their most vulnerable family members.

Monday, June 9, 2014

Give she does not seem to use the BPAP enough to benefit due to the burden of this, it may not be kind nor reasonable to admit her to ICU every 6 mo, physically restrain her, and increase BPAP pressures. Rather we could use BPAP when tolerated/ accepted only and focus more on her comfort. Recommend no intubation and other goals of care discussions deferred until all data and stakeholders available.

I have had a good talk with Dr. Ron Damant who was very compassionate. He has known my handicapped sister for 14 years. We’ve not seen him for a while (since my sister went to the Good Sam) but I gave him a short summary of her status.

I give him this summary so that I could go over two years of missed appointments; apparently the last meeting was in 2011 with a missed appointment in 2012.  I leave out some of the physician names because it isn’t significant to me to state their conduct.

Summary of my sister’s care to date:

June 9, 2014

1) Period of difficulties ending in a family meeting with Dr. X where I was present indicating that Dr. X was not able to do anything. (April 9, 2014)
2) I requested the Good Sam physician to ask Dr. Y for a second opinion.
Dr. X closed my sister’s file saying that this was at the request of family. (This was not at the request of the family; I feel this doctor took the opportunity to dump my sister).
Further attempts to contact him have failed. At the last ICU hospitalization at the Gray Nuns Hospital he declined to help my sister (went into emergency May 28, 2014 Wednesday). I requested a specialist referral. Dr. Kropelin –who I met at the emergency on Thursday May 29, 2014 (early am I believe) indicated she must have a specialist as she is on a restricted drug but no one has referred her for a specialist as far as I can determine. I contacted ICU and they indicated that I should talk to Dr. Damant for a referral.
Dr. Duggan is out of town now. Dr. Kropelin is not on call. I phone the Gray Nuns ICU and apparently Dr. Duggan will talk to Dr. X. I decide to ask Dr. Damant to find my sister a new specialist as I don’t believe Dr. X wants to take care of my sister. I believe he should have transferred her care to another specialist especially since she was on a restricted medication.
This is the matter of ethics again.
3) I have requested the medical and respiratory notes for April, May and June 2014 to survey the compliance and care. The Good Sam has provided these notes.
As far as I can tell while the usual night staff who got my sister to wear her mask was away for six weeks, my sister did not wear her mask. When she did not wear the mask the replacement staff did not call family about this matter.
As this is the case, I have decided to go to the extended care daily and watch her until she is asleep with the mask.

The mask itself was changed only on March 12, 2014 at the same time we got the BiPap machine changed.
This is what Vitalaire said about the mask:

Re:  My sister

Julie brought her sister her to Vitalaire for a mask fitting. The Quattro Large mask needed replacing as the cushion was very worn, this was a large Quattro full Face mask. We tried a Quattro Medium mask which fits much better.
She replaced her hose as it was 3 short hoses pieced together not ideal as you are aware.
Provided a one way valve (Pressure valve) that must be attached to the humidifier as per Manufactures instruction for Safety to prevent the flow of oxygen into the Bipap to reduce risk of fire if unit sparks.

We were not able to download her unit to check compliance or effectiveness of treatment as there wasn’t a data card in place.

The power adapter was plugged directly into the Bipap unit bypassing the humidifier. She was not receiving any humidification.
The adapter was plugged into the wrong outlet as per Respironics needs to be in the middle outlet. When I tried to correct this I noted the end was cracked and unable to insert it to the correct outlet.

I know you are short RRT help at this time if there is anything we can do to offer assistance please call.

Susan  Carlyle
Registered Respiratory Therapist
Senior Therapist  VitalAire
When I go on June 6, 2014 to get the download from the BiPap machine this is the report I get:

Re: My sister

The download of her BiPap machine shows she has only used it 5/60 days. Did she just get this BiPAP machine? She should be using it every night. The download is good and the BiPAP is working well when she has it on.

It also shows a high leak.  It looks to me like she takes off the mask and then it blows into her pillow for a few hours before someone shuts it off. For example, on the night of 05/06/2014 the BIPAP was on and blowing for 20 hr 406 min but was only good for 11 hour 49 mins.

Please call if you have any further questions.

Laurie Walsh, RRT.

This download confirms that the machine is left on by staff in the morning. I go to the Good Sam nearly every second morning and the BiPAP is left on. This machine will burn out. I usually put it off.
I have mentioned this to staff but it is not on a list and so it is not checked off.
The progress reports may document them putting the machine off. I haven’t checked yet.

4) The discharge summary

Review of discharge summary from the Gray Nuns Hospital ICU. Why the use of room air? What will my sister be on now? What are the BiPap settings?

The folks at Vitalaire indicate the settings should be 20/12 with oxygen.
The folks at the Gray Nuns ICU indicate the settings at 20/14 room air.
She is currently on 20/12 with oxygen.
Dr. Kropelin indicated that she probably has central plus obstructive sleep apnea now. She needs a sleep study to evaluate her. Her last sleep study was (I believe) in 2009.
5) Use of the chamber to administer puffers. I paid $50 for this chamber as it isn’t covered under health care.  I don’t know how it will work out. The puffer schedule needs to be written down as well as dosages for the new respiratory therapist as well as for my sister. I have requested modifications to the respiratory care at the Good Sam.
For a period of time there was no clear care provision for her.
The permanent respiratory therapist is on long term sick leave.
They have hired a new therapist two weeks ago. This therapist may not have enough time to deal with care of so many patients. I have requested that  my sister’s mask be cleaned every week. This is the minimum that is required. I have also requested that there we documented checks on my sister. I would like to see them use the puffer chamber. There has to be checks on her oxygen canisters and settings. I note that the BiPap machine is on (as noted by the Vitalaire download) every day when it is used. This will burn out the machine.

I think it would be useful to have a letter indicating the use of puffers and also care of the BiPap and machine for the Good Sam staff. I would like this letter as a record of care requirements.

Letter to Good Sam about the importance of ensuring the mask is on (call family if required), the need for the mask to be cleaned once a week by staff, the need for regular scheduled checks on my sister that must be documented, the fact that I will be doing monthly downloads to monitor compliance and care.

5) Letter to Vitalaire for the monthly downloads.This might be overkill but I was shocked by the figure of only 5 days of mask use out of 60 days. This is not going to change without follow up by family and I am going to be the family advocate.

6) Schedule a follow up appointment with Dr. Damant (fall). Ask for a sleep study (central and obstructive sleep apnea). Dr. Damant will bring my sister into the University Hospital for check up, sleep study work and settings on the BiPap machine.

7) Settings on BiPap machine to be clarified so that I can go to Vitalaire to get them changed.
8) The ethical and legal requirements of medical staff seem to something I need to focus on. The fact is that we are dealing with a person of limited insight. If this patient was a person of full capabilities withdrawal of life sustaining measures might be appropriate.
However we are dealing with a person without full faculties and it is in my mind, unethical and inappropriate to refuse to resuscitate her. The fact is that I did not know she was not wearing her mask for 55 days. I did not have the memory card to verify anything to me prior to March 3, 2014 when I got both the mask and the machine changed. Now I have a memory card and I will download the information monthly. I will follow the care of my sister in this way to ensure compliance and care. In other words, as her patient advocate I have been in the dark about the lapses in care and complaince. I now understand the problems and I will be taking appropriate remedies.

What I need from the medical staff is support for a handicapped person who has many interlocking conditions that make it almost impossible for her to survive without strong advocacy.
I believe with a good specialist, more involvement from family with reference to mask use and the use of regular downloads to monitor care –we will have better outcomes and fewer hospitalizations.
However please note, she is fragile.
And she will require some hospitalizations.
This means that the folks who take her in must understand that just because she is incapable doesn’t mean she can be refused resuscitation.

I note that the matter of hospitalizations are seen as a problem by ICU staff at the Gray Nuns Hospital. The most recent discharge summary is as follows:
Consultant’s Opinion:
My sister is again admitted with acute on chronic respiratory failure and decreased LOC. I suspect with current management this trend will continue and she will ultimately die of complications of…
I recommend obtain last level I data, recent BPAP download, and phone consult with her LTC MD and Dr. Ron Damant. (LTC is long term care MD).
Give she does not seem to use the BPAP enough to benefit due to the burden of this, it may not be kind nor reasonable to admit her to ICU every 6 mo, physically restrain her, and increase BPAP pressures. Rather we could use BPAP when tolerated/ accepted only and focus more on her comfort.
Recommend no intubation and other goals of care discussions deferred until all data and stakeholders available.
I talked to Dr. Damant about this matter of not intubating her.
I don’t think this is ethical or acceptable. Legally this is a situation where we are imposing our will on someone who wants intubation and has asked for the resuscitation. Her failure to use the BPAP should have no bearing on the resuscitation efforts of staff. This must include intubation if required.
I am not sure why vulnerable patients must go through this sort of chatter and pronouncement by staff who seem to be wanting to save a few bucks. This has nothing to do with the matter of kindness to my sister.
Real kindness is saving her life when she has a viral infection.
Real kindness is listening to her wishes.
Real kindness is intubation to save her life.
Dr. Damant is not like the consultant and understands my sister’s challenges.
Maybe the consultant at the Gray Nuns should also try to understand my sister’s challenges and consider that she wants to live even if her behavior contradicts it. She loves music. She paints. She laughs. She has a basket full of stuffed animals. She can be difficult but then if you had a constellation of illnesses wouldn’t you be difficult at times? You have to put yourself in her place.
And do your best.
Intubate her please.
I demand it.
I don’t blame the Good Sam for the sorts of problems that are evident in my sister’s case but I do want the problems resolved.
I believe these sort of problems occurs with patients with cognitive problems and no insight. I also believe they occur when there aren’t enough RNs around. The LPNs are nice but they aren’t as useful or as well trained as the RNs. I can’t talk with an LPN the way I can talk with the RN.The RN understands medicine.
In addition my sister is a big girl and she does intimidate some staff.
She doesn’t scare me. Very little scares me.
But this is how it is.
The Good Sam is doing what it can with one RN for sixty very ill patients. and one Respiratory therapist for one shift per WEEK.
Family have to be the guard dogs of their most vulnerable family members.

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