Good day,

I write to you as I feel I have not done my duty to myself, my husband or others that may end up experiencing the painful realization of what can go on in our Ontario hospitals.
Of course there are some fantastic staff, and people that actually do this job out of care and respect for their patients.

I have a large amount of complaints and not sure how to go about writing them. I would like to list a few.

A brief story of my husbands condition. Diagnosed Glioblastoma (brain cancer) Nov 3 2011.

– jan 2012 sent home from Sunnybrook hospital emergency with platelet count of 2 and still bleeding from his nose, asking please admit him there is something wrong to no avail

Emergency admittance from radiation following day – still bleeding – urgent blood transfusion required

Packing placed in nose at hospital to stop bleeding – later confirmed packing contaminated causing 3 infections – ICU – hospital stay jan 3 – Feb 27.

– another occasion while in SB hospital husband all of a sudden becomes confused, pulse dropping, urgent tests to be run – nurse called to get blood work – nurse can not get blood as my husband is critically dehydrated – no blood would come out of his veins.

– another admittance husband in ICU – has a seizure, hospital did not contact me, I found out when I arrived that morning, confused why as he is on seizure medication, I look at his chart, hospital was giving the wrong dose, too small amount. I had provided a copy of all meds and verified they had the right amounts previous

– call button not working one long weekend, husbands room near nursing station, was advised call button will not be fixed until after the weekend. My husband was anxious during hospital stays and just needed reassurance from nurse he was okay often through the night – while calling out for his nurse, she became impatient with my husband and threatened to close his hospital room door if he kept calling her. My husband in absolute fear began to cry asking her Please Don’t. My husband cried the next day when he told me what had happened.

– a dr in the ICU while my husband was receiving a blood transfusion told me ” I think of the blood we receive as a gift” “there could be a 20yr old who is in a car accident who really needs this blood” I told him my husband is only 47 yrs old. So upset, nurses who witnessed this told the dr in charge, she came to me hugged me and said ” there is nothing I can say but sorry, that should have never been said to you”

– another lead dr in the ICU called the Ethics department on me – I felt I was constantly being pressured to change the order to DNR to the point where their Ethics person came to speak to me about this decision. My husband at the time could communicate via reading his lips, blinking for yes or no, hand writing. He told the Ethics person he wants to fight. I had said to this dr a few days later, my husband appears to be getting better – the dr said “I’m not delusional”

Nurse ICU – my husband was not able at this time to use a bed pen, he had a bowel movement. I advised the male nurse, he told me “the diapers are really good, you can have 2 good Bm’s before a change” I asked this nurse to think of my husband as a new born baby, would you leave a baby laying in a bm. My husband was consistently being treated for bed sores and having a BM would cause him burning and great discomfort.

-my husband could not tolerate Morphine, – he would become confused, hallucinate, be unable to sleep, when discovering this during a hospital stay, dr orders no morphine. During the next admittance to the hospital I advised all meds and advised No morphine. A few days later in the ICU again, my husband acting delirious, confused, yelling out, more tests were ordered, the next day my husbands state of mind was worse. They began tying him to his bed. I realized right away it must be a medication, I check his chart and find they are giving my husband morphine! My husband did not know me, he did not remember who I was because of this drug.
It took days for him to level out once they stopped giving this to him.

– nurse left the railing down on husbands bed, he fell out of bed and had bruising I was not called.

– diarrhea after repeated calls to the nurses station for assistance to the washroom to no avail as usual, person visiting in next bed witnessed the calls, husband has BM accident in bed. I arrive from cafeteria before nurses arrive. Huge mess in bed. Leaked through to mattress. Nurses finally arrive. They attempted to put the clean sheets on the diarrhea soaked mattress . I stopped them got the nearest disinfecting wipes and cleaned the mattress. It was then noticed the clean sheets now have diarrhea on them. I said you can’t do that, you can’t lay him in this, would you do this to a member of your family, would you do this to your mom! They said “we will change them later, we don’t have anymore clean sheets right now” they left him like that.

My husband was diagnosed with C-Diff that day, moved to isolation. The next morning when I arrived. There was an open garbage bag of his used diapers, wipes, directly below my husbands head on the floor beside him. The garbage at the open door way was full on the top was the same including the under pads full of diarrhea. On the sinks ledge at the door way was my husbands late night snack, and his breakfast. My husband was not able to get out of bed due to weakness and prolonged hospital stays without adequate physio. This would happen very often. He would go without his food until I arrived.

The Personal support persons would ask my husband, would you like to be washed today, he would always say no. He felt most were uncaring, there is no hot water, he would be cold and uncomfortable. Days would go by and finally a nurse who cared enough told me. I advised the personal support, that bathing is not an option. This process needs to be changed, to “it’s time for your wash” not do you want to wash” nobody in bed sick wants to be moved around but to keep infections under control, this should not be an option.

– my husband was telling me the hospital staff ignore his calls when I am not there. I honestly felt he must be mistaken. So one evening I came back very late unnoticed. To my surprise my husband was correct. I could see the nurses station from his room and watched the person at the desk ignore my husbands Call button calls. Literally answering other patients calls while silencing my husbands. I had my husband press the Call button again and walked up behind this staff member as the ignored his Call. I said excuse me, he said yes, I said my husband was been calling and your not answering, he asked which room, I said the room number and then said the light that is flashing on your phone. Other occasions I witnessed the same on day shift as well.

– I had been with my husband from approx 6am this particular day, it is now getting close to 5 or 6 pm other than setting out for a walk or lunch. My husband was being given sleeping aid that made him too tired through out the day. He slept alot at this time. I thought it strange I haven’t noticed the nurse coming in to give his meds. I call the nurse, the covering nurse arrives and I ask, she checks and advises me my husband has not received his meds today because he refused!! My husband could not have refused, he was asleep like in a coma. The covering nurse then told me he missed them so he has to wait until the next ones are due? I protested, we woke my husband briefly and gave him the medication he needed.

Sunnybrook has an awesome on line patient test results etc. I can see all the meds he was on results of tests etc. it was great. I would go home look up the meds find out what they are for and see his blood counts. As I mentioned the sleeping aid in the last comments, this is how I realized my husband was on this med. I was very worried as my husband seemingly slept for days, I spoke to his dr and asked about this amount of sleep and asked what a particular drug prescribed to my husband was for – he told me that my husband one day told him he was not sleeping very well so he per scribed it to him. I asked the dr to discontinue this drug right away as obviously he no longer required this drug as we can barely wake him up.

Well I am sorry for such a lengthy email, but hopefully you can see I was honestly alarmed, shocked and deeply saddened by the treatment my husband received. Thankfully I was able to be there with him. What happens to these poor patients that don’t have anyone to watch over them, what happens when meds are not being watched? I honestly feel my husband would have died unnoticed by neglect of the items mentioned above if I did not become proactive in his care. All too many people have a false sense of their loved ones being left in good hands when they leave the hospital.

This is not all of what occurred but its a big part of the sad picture of our health care.

We had similar experiences at East General and St Michael’s, moving around to try to find better care as my husband never wanted to return to SunnyBrook ever again. St Michael’s laid my husband flat for a Ct – the emergency department did not pass critical information that my husband was internally bleeding. While laying flat my husbands lungs filled with blood went into cardiac arrest and thankfully was resuscitated. I went to their patient care office twice and called no one has contacted me.
Our next hospital visit we went to East General, where they did not advise me they were putting in a breathing tube via mouth. I was panicked as I did not understand why they were taking so long to let me in. When the nurse came and told me about the tube, I just cried, I knew we would not be able to talk to each other, I knew we couldn’t say I love you as we always did before each procedure. Knowing each time could be our last this was very important to me, to us.
Unfortunately my husbands condition worsened and now being informed East General are not Equipped with the Life support machine (breathing tube in the throat) that my husband needs and advise me my husband is not well enough to survive a hospital transfer, there is nothing further they can do.
Why, why didn’t they tell me this before it was too late, why did they take away our last goodbye.

Sadly my husband never woke, kidney failure began and the difficult family decision to turn off the machines took place April 20 2013.

I really don’t know what to do about all these events and as i mentioned there are more, ppl need to have a better understanding their loved ones care is always in their hands not the hospitals. We need advocates for ppl who are alone. We need better infectious decease control, STOP moving patients through the Hospital without masks for self prevention.

If you could advise me on how I can bring my concerns to light, how I can help make changes to our Health care, and to Educate family on their need to be vigil in their family’s care.

Thank you for your time

Kathleen