In 2009, Mike noticed a sudden change in his wife’s short term memory. He was aware that her behavior may have been indicative of a stroke, and so he took Vickie to a nearby emergency room.
After being admitted to the hospital, she was put on medications to reduce her blood pressure and reduce stroke risk; her regular medications were put on hold until they could make a better assessment of her neurological condition. She required an MRI scan, but had to wait as other patients were deemed more critical. This institution had one MRI scanner, and there were only five slots per day that could be taken by inpatients. During the wait, she was quite uncomfortable due to the new medications, and having been taken off of her regular medications.
Mike recalled that in 2005 Vickie has been given an MRI scan when she was treated for a subarachnoid hemorrhage in the United States. That evening he contacted the hospital that would have Vickie’s scan from four years before, and they speedily prepared the image and sent it overnight. The doctor here was able to compare it to the eventual result of her MRI scan.
This situation demonstrated that had Vickie got her scan earlier, she could have been discharged home and resumed her regular activities and medications. Mike gained access to a breakdown of the medical costs, and determined that 92% of the money spent by OHIP did not help Vickie in this instance.
After consideration, Mike wrote the Patient Relations Manager at the hospital with his story. They agreed that had Vickie been scanned sooner, she could have resumed her regular activities much earlier. Unfortunately the hospital did not have the financial resources for another MRI scanner, nor the staff to run it.
Nonetheless the Patient Relations Manager discussed the recent implementation of a Medication Reconciliation Project which would address part of the issue. The project required their nursing staff to gather a list of all the medications that patients take at home. Each one would then be checked by the doctor and ordered or discharged upon admission. This would then be reviewed by a staff member whose responsibility it is to follow up with every patient and uncover missing information.
Following their communication, Mike felt that the Patient Relations Manager used Vickie’s experience to make speedy, effective changes to improve their process.
I almost laughed when I heard that. Of course, that might have made me move, so I remained "calm". Or as calm as I can be lying on my back with my shirt off in a doctor's office. One of the office's attendants was administering a test on me. Another...
I almost laughed when I heard that. Of course, that might have made me move, so I remained "calm". Or as calm as I can be lying on my back with my shirt off in a doctor's office. One of the office's attendants was administering a test on me. Another was on the phone at a nearby desk calling patients to reschedule their appointments. Apparently the specialist was no longer available on an originally scheduled day and other patients were being called to be rescheduled. Obviously this was a very busy specialist and the concept of patient privacy had to be sacrificed. With privacy a dead issue, it should be no surprise that availability was quickly becoming just as scarce. Once the specialist actually met with me it was clear it could never really be guaranteed. The visit was about ten minutes long. I was in to see the specialist for follow-up on previous tests and to discuss results about a significant life-altering and threatening condition. Information was offered in very small doses. Two questions were answered with a decision to send me for two more tests, but no discussion. Other questions were answered almost defensively. Not once did the doctor seem to emit even a sound of assurance. Recommendations? Suggestions? Sure, if I led him to one he'd offer it. But ultimately, everything just was what it was and would have to now be monitored and tested and discussed only when and as the doctor felt it necessary. Shall we say, in six months? Sure, why not? I'll just relax and try not to move.
My aunt was given a wash and set, and a full manicure and pedicure as a birthday present from her gentleman friend on his birthday. That night, they were going to his birthday party and he wanted her to look just right. The birthday present included a taxi fare to and from her house to the hair stylist. When the cab came to pick her up, she leant forward to tell the driver her correct address. He looked back in his rear view mirror and told her, ‘Lady, you look like a million bucks’. She grimaced and tipped forward into the seat well. He shrieked to a halt and looked into the back seeing that she was coughing up blood. He sped away, running lights on his way to the hospital. When they arrived at the emergency entrance, she was still alive. When told of the diagnosis of a ruptured aortic aneurism, she was able to respond that she wanted the operation to seal up the rupture, though she was aware that she only had a 30% chance of surviving the operation, let alone returning to good health. They took her straight upstairs to the operating theatres, where the best specialists and surgeons took on her case.
She was still alive when I first saw her in the recovery room after the operation. What I remember best was how pale she looked, how drained from the loss of blood. There was so much hair spray still in her hair that her wash and set still looked perfect, with Autumn Harvest chestnut waves matching her bright finger red nails and toe nails. Even with the major operation, she was still doing her best to belie her 85 years. As soon as she was conscious, her expressive eyes told us everything that we needed to know. The doctors had done a tracheotomy that meant that she wouldn’t be able to speak for the time being. We knew her so well that we scarcely noticed her inability to speak as she could tell us anything through her eyes or through written messages and her nodding head.
The next time I saw her, she was in the Intensive Care Unit, in a small area shielded from the rest of the world by a wall of moveable pale green curtains, hanging on stainless steel runners, one of sixteen bays along both walls of a long white tiles room.. The big west facing windows, two bays down, opened out onto the parking lot of the funeral home. Sometimes for a family confab or simply to step away for a minute from the relentlessness of accompanying my aunt, we would stand in the window looking out at the parking lot, the illuminated signs. The Intensive Care Unit at the hospital never slept, nor did the funeral home. No matter what time of day or night, there was always someone coming and going in and out of the funeral home through the parking lot.
That curtained space was our home for the next eight weeks while my aunt struggled through recovery. At the very first, she seemed to struggle back from the worst effects of the surgery. The grievous wounds from the sawing, cutting, cauterizing, suturing slowly healed, the intense pain subsided as she began the painful process of recovery. However, she then began to show a series of symptoms unrelated to the surgery. With each symptoms, she appeared to deteriorate as the doctors came up with new treatments, new strategies. Every time there was a new symptom, the doctors would prescribe a new course of medication to treat that specific symptom. Sometimes, there would be a marginal improvement in her overall condition. But more often, there would be some reaction or counter-reaction in the form of further weakness in her immune system, difficulty with breathing, edema, or some skin rash. She developed terrible bed sores from lying immobile on a mattress, so a specialized mattress was brought in that now enabled her to lie on 10,000 soft finger tips, so that her skin never rubbed against any surface. However, there didn’t appear to be anything that would halt the general deterioration in her condition.
After about five weeks, her health took a sharp decline when she went over the edge of a cliff of well-being when full blown tuberculosis was diagnosed. It appeared that she had contracted tuberculosis as a young girl when she had had a bout of scarlet fever. When she healed from the scarlet fever, the tuberculosis cells had gone dormant, hiding in some deep recess on her lungs, waiting to being awakened by weakening of her immune system and the concerted assault on the sustaining systems in her body. We were all tested for TB and we were never allowed close to my aunt except if we were washed, gowned, masked, gloved, and socked up beforehand. As the very strong antibiotics to control the tuberculosis began to take effect, they contravened the effects of the other range of medications she was being given so that her immune system was destroyed and she descended gradually into differing levels of a coma from which she never emerged. By now she was unable to communicate with us, but we knew her well, we knew what she would have wanted, and we had been involved at every stage with her treatment. At the same time, we had complete confidence in the doctors/ specialists, who were providing us with the best advice available, bringing in other specialists within the hospital to recommend on specific aspects of the base. We felt strong in our support because of our knowledge of her history, her character, and our ability to discuss freely and openly with the doctors at every stage in the treatment.
After about two weeks in which my aunt was never fully conscious, drifting through various levels coma, we had a family conference with the lead specialists handling her case in the Intensive Care Unit. They provided us with an up to date outline of her medication regime as well as the responses to the different machines that were sustaining my aunt through her illness. The outlined some new symptoms that were appearing alongside the tuberculosis and the other post-operative conditions she had been experiencing in addition to recommending further additional treatment strategies. Thinking back on it now, I am not sure why I asked the question at that moment, but out it came, ‘How much of what we can see of my aunt’s bodily function is her and how much is the medication and the machines”. The specialists all looked at one another and then one among them replied, ‘Oh, about 20% is her working and about 80% is the medication and machines’. I turned to my cousin, and my aunt’s son, ‘Well, I think that we should take her off the machines and let her die in peace’. He nodded emphatically and told the specialists that he agreed and that there shouldn’t be any further treatment.
The doctors asked us several times if we understood the consequences of our recommendation for my aunt. She would be removed gradually from all of the assistive machines and taken off all supportive medication, other than pain reduction medicine. We responded affirmatively several times. The doctors looked at one another, saying something to the effect of that’s it, then. We all pushed away from the table and walked back into the ICU, gathering around my aunt’s bedside. She was peaceful yet unresponsive, hugely disfigured by the edema in her face and neck, a consequence of the latest treatment strategy. She was unaware, and yet we were acutely aware as the doctors filled out the treatment plan on his clipboard and gave instructions to the head nurse on duty that morning. As I looked down at her face and the white sheet covering her body except for her hands, I remember hearing the doctors voice droning on, giving instructions about the cessation of medicines other than pain management and the gradual removal from the drips and the assistive machine like the breathing pump. Looking at her, I think that I realized gradually yet forcefully the magnitude of the decision that we had taken on her behalf. The doctor explained to us the whole procedure again, closing his narrative with the words that death would come peacefully and quickly, within a few minutes, two hours at the most. With that, he said goodbye, turned on his heels and left the ICU. We never saw him again.
We stood around the bed, holding my aunt’s hands in ours, thinking about the overwhelming moment we were about to share. I remember being suddenly aware, as though for the first time, of the relentless glare and hum of the overhead fluorescent lights, the low hum of conversation with frequent interruptions from low voices clipped commands, the clatter of instruments falling into metal trays, the shushing of curtains, the low roar of daily life in the ICU, minute by minute. “You know, you don’t have to do this right away, if you aren’t ready.” said Beverley (I still remember her name), the head nurse on duty. “You don’t have to do it right here, if you would prefer some place more private. We have a little storeroom down the hall. It’s not much but you can be alone there with her (my aunt), come and go as you want. We could set it up for you.”
Sure enough, there she was when we came back to the hospital, in a small room just to the left of the entrance to the ICU. The door had a window of ribbed opaque glass and a sign saying ‘Storage’ outside. There were cardboard boxes stacked high on the left side of the room. There was Helen my aunt on the bed, bathed in pale yellow light from an incandescent light in the ceiling. They had disconnected all of the drips, except the morphine drip when they moved her. The breathy woof woof of the breathing pump filled the room as well as the flickering green light of the heart and breathing monitor glimmered in the darkened room. It was a strange unfamiliar setting, but the best possible place for us to accompany my aunt to a death as she would have wanted and which we all wanted for her. I am not surprised that I remember every minute detail of that room and those hours that we spent there with her.
After we had sat for a few minutes in silence around her bed, a nurse came in to gradually turn down the breathing pump. We all stared fixedly at the heart and breathing monitor as the gentle woof woof of the machine faded to nothing. We looked quickly at my aunt to see her chest rising and falling gently and the almost imperceptible aspirated breathing in and out. The monitor showed her regular heart beat. She was still breathing, still alive. We started to sing to her, say our prayers, read to her poetry and passages from the Bible. Her heart beat skipped a bit faster. The nurse came in and adjust the morphine in the drip. We continue to read and sing. The Psalms, the Egyptian Book of the Dead, the Tibetan Book of the Dead, the Oxford Book of English Verse. She continued to breathe gently and regularly. We napped, changed books, went for walks down through the dim silent night time hall and back. The nurses brought us sandwiches and tea from the cafeteria. We sang hymns and prayers. She continued breathing, lying there completely immobile, the only change being the edema gradually diminishing around her face and neck.. We exchanged anecdotes about her life, chatted about the family goings on and, when conversation failed, we would open another of the books and begin to read. She continued to breathe, though there were no periods of irregular breathing, halting in her breathing, and then she would start up again but each time the breathing was slower and shallower. The nurses came in and changed the morphine drip. Looking at the heart monitor, we could see that the heart beats were slower, fewer and farther between. Then it stopped, we looked at my aunt but she was still breathing, the monitor started up again, the heart beats almost imperceptible. Our sense were at their most acute watching the monitor, listening for the sound. Suddenly, there was a loud prolonged BEEEEEP and the line went flat. When it stopped there was not a sound in the room. The nurse came in and checked that my aunt was dead, turned off the monitors and left. We said the Lords Prayer, said some prayers, sang a hymn, sang the Memory Eternal. We each kissed her and said our goodbyes and left the room. Downstairs, we stepped out into the early dawn light flooding the street corner. A full day had passed.
I always thought that her dying and death was one of my aunt’s greatest gifts to me in that I learnt so much through the experience, which helped to prepare me for other deaths and difficult moments in life:
That she received the best possible care from all of the health care specialists who treated her and that the hospital functioned at full effectiveness in the way her case was handled;
that specialist care is ‘siloed’ in which each health challenge is handled by a different specialist with little attention to the integrated nature of illness, little ability to cross reference, make connections between different symptoms and their treatments;
that specialists have difficulty involving families in the treatment strategies as they have difficulty with the psychological dimensions of illness and family accompaniment;
Families are seen by specialists as a hindrance or encumbrance, rather than an asset; specialists have professional difficulty with death and terminal illness because it flies in the face of the Hippocratic Oath with implications of personal professional failure in not being able to avoid death;
Specialists really ‘get off’ on interesting cases, such as risky operations with the frail elderly or multiple diagnosis with contradictory symptoms, however, the greater their interest, the greater their professional disappointment and disengagement when their best ideas do not meet the requirements of the situation;
Nurses are much more attuned to the psychological dimensions of illness and dying for the individual and for the accompanying family or friends;
In a traditional vertical hierarchy of a hospital, the nurses have greater power and influence than one would expect from years of experience of making the system work to their advantage;
Nurses in specialized areas such as ICU are infinitely more trained and up to date with all the latest technologies and methods than their fellow nurses in regular wards or in long term care facilities (my mother was in a nursing home at the time of my aunt’s death);
The essential need for moral, spiritual, psychological supports from within the hospital to support dying people and their families and friends during the process of accompaniment;
and the need for an patient advocate within the hospital to act as a spokesperson and advocate for the patient and families, and within the health care system generally.
This is an account of my patient experience. I am writing with the hope that something can be done so that no other person has to go through what I did. The pain and suffering I had to endure was unnecessary and could have been avoided if the first health...
This is an account of my patient experience. I am writing with the hope that something can be done so that no other person has to go through what I did. The pain and suffering I had to endure was unnecessary and could have been avoided if the first health care professionals I came into contact with had listened to me and put their arrogant egos aside. I have contacted my local health region but will be writing to everyone who may be able to help fix these problems. Not only did I have to suffer without reason, but because of faulty logic and not following basic scientific theory, my recent ordeal cost our system far more money than it needed to. I feel that if I had been sent for an ultrasound the first day I went into the hospital then I would have had surgery the next day and been out of the hospital two days later. But instead I was sent home with a lump the size of my fist which turned into two lumps the size of baseballs by the end of that week. Then it finally broke open at which time I spent a week in hospital with getting three different antibiotic four times a day, with a fever of 39 at times. After an additional week of suffering I was sent for an ultrasound, a day later I had surgery and was out in two days after that. I have been misdiagnosed a few times in the past but this takes the cake. But what am I to do, where is the accountability? So I hope someone within your organization can use my story to fix the way doctors work with patients.
Jan 20 – Noticed a small lump the size of my thumb in the bend between my upper thigh and groin area. A small amount of blood was on my hand as I passed my hand over it. I cleaned it off, gently felt the area, but did not squeeze or aggravate the area.
Jan 21 – Woke up with a lump the size of my fist. I went to the emergency room at the local hospital and was told I had an ingrown hair by the attending nurse and she did not want to waste the doctor’s time by calling him in. I told her she was wrong and I would not leave without seeing a doctor. A doctor showed up and told me it was an ingrown hair and dismissed the fact I told him I had had literally hundreds of ingrown hairs and I did not feel this diagnosis was correct. They swabbed my skin and gave me a prescription for oral antibiotics.
Jan 24 – The mass continued to grow and is now the size of two fists. I returned to the hospital and was told all is as it should be despite the fact I could hardly walk. I was then showed the results from Monday’s swab showing it found no infection. Well what did they expect as the mass was growing at a hyper rate inside me and had not discharged anything? I asked them to take a sample and have it tested but I was again dismissed and told to go home.
Jan 25 – I could no longer take the overwhelming pain and returned once again to the emergency room at the hospital. This time when I laid on the table the doctor was able to open the mass and start discharging it. I broke the bed headboard in the emergency room while they were draining it and I was screaming in pain. The pain was beyond extreme. At this point I was admitted to the hospital. I was then put in a room and given 10” abdominal pads and told I was to change my own dressings. I was given something for pain and put onto three different antibiotics four times a day through intravenous.
Jan 26 – Jan 31 – I continued to have difficulty with eating as I had an overall feeling of nausea. I had to change my own dressings this whole time, maybe 10 times a day, in an area I could not see. At one point I had to call three different times for pain medication and waited 40 minutes. Three different nurses came to my room and all said ‘OK’ when I asked for medication and then left. The second one who came to my room yelled at me like a dog from the hallway as she could not be bothered to gown up and come in the room. When the nurse dispensing the medication came around I asked her for the previous nurse’s name and employee number that had yelled at me from the hall and she refused to give it to me and then told me I had been the one yelling at her. I had not yelled at anyone. Later that week a nurse kicked my bed to wake me up at one point. I then had seven different intravenouses as no one could seem to do it correctly. The nurses blamed the cheap equipment, but that’s not right because another time I was at the Yorkton Hospital they were able to put one in and it worked fine for the three days I was there. Again I was told it was just an ingrown hair and all tests of materials discharged from the site came back as sterile.
Jan 31st – I was sent to another hospital to get an ultra sound as the masses were not really getting any smaller. I had the ultrasound and was told to go back to my community. Once back in my community I was told the doctors would consult and give me the results.
Feb 1st – Somehow I was given a hard time for not staying in the neighbouring hospital as the surgeon wanted to consult with me, but how was I to know this? So I went back for a consultation. While consulting with him I was told I was to be admitted and I would be having surgery today or tomorrow. At this point I was sitting in the casting room in the emergency room with my wife. After an hour she went to the nurses’ station to ask about when I might be moved to a room to get ready for surgery. She was told the doctor needed to still see me and to wait. After two and a half hours I had to go to the washroom at which point my dressing fell off. My wife is now in tears seeing the discomfort and pain I was going through with no indication that anyone cared. I was bleeding and had to find something in the room to stop it. Lucky I found a neck collar casting which I cut and secured over the wound to stop my bleeding. After three hours my wife left as she was too distraught to stay with me any longer.
I then proceeded to the nurses’ station where I told them I refused to stay in that room any longer and wanted something done about the ridiculous situation. I was told again that the doctor was not available and on top of that I might as well get used to the cast room as there were no beds available for me. At that point I told them the doctor had already told me I was to be admitted and I was to have a room prior to surgery. The one nurse specifically told me she was in charge of the rooms and I was not getting one. In three hours, not one person checked on me and both times when my wife and I went to the nurses’ station they were not busy or overrun. There were at least 10 people, nurses, EMTs, and I believe another doctor who were laughing and seemingly having a merry old time while I suffered in pain. Finally the manager of the emergency room returned and started apologizing for what had gone on. Within an hour I was having a multitude of tests, blood, EKG, and somehow I got a room that I was told did not exist. At 7:00 PM that night I had surgery where I was told by the surgeon that he had removed two masses.
Is anyone really still thinking this is an ingrown hair?
Feb 2nd - Lucky for me the nurses at the neighbouring hospital are now changing my dressing and I don’t have to do it myself. The area of the surgery feels good and for the first time I seem to be getting at least reasonable healthcare. The intravenous put in the day before seems to be fine and would be until I left on Sunday. This surprised me as it was the same ones the nurses at my community hospital blamed for their inability to insert one properly. Of the seven times they had to redo my intravenous in my community hospital, four times the antibiotics started to fill my skin. This was painful and the intravenous given to me in my community hospital burned when I would get the antibiotics, but the one put in me correctly in my neighbouring hospital did not burn or create a painful lump under my skin. When I asked about the burning sensation in my community hospital I was told it was just the antibiotics, but if this was the case why did the same antibiotics not create this same sensation in my neighbouring hospital? Now, as well in my community, I had to shave my own arms for the intravenous. I ask you to recall that I was in very serious pain on pain medication, told to change my own dressing, told to shave my own arms so they could redo my intravenous seven times; I did not realize we had a self serve medical system.
Feb 3rd – I was told by the doctor I would be discharged today sometime between 11:00-12:00. My wife showed up at 10:30 and we had to wait until 3:00PM. No doctor came to see me and I was discharged without any antibiotics or pain medication. Again the floor was not busy and there really is no apparent reason as to why I had to wait until three to leave. I was told when I was admitted I would have my email taken so I could do a survey. No one offered this to me and the nurse looked rather distraught when I requested the chance to do the survey. I was given a note with a website address where I could access the survey. So, I am writing to you today to have my matters looked into and to see that no one else has to suffer the amount I did for no good reason.
It’s Sunday September 30th, and in 6 days it will be one year since I found myself in the emergency room for the second time, afflicted with appendicitis (which I fondly refer to as “Appendicitis II”). Now, I am enjoying a day of knitting, yoga and quiet, and a pear.
This time I was in a cozy ER room within earshot and a good view of the nurses’ station. I had been at a play earlier that evening, ignoring the familiar pain, hoping it was just the play and the result of rushing through dinner.
The ER physician told me that the pain couldn’t be “that bad” because I refused the morphine. I told her that I practice yoga and am able my voice trails off as she leaves the room. She was replaced by 2 young male nurses. The trainee was instructed on the insertion of my IV (saline), at which he was unsuccessful many times. Though I am generally an assertive person, I was watching and weighing the consequences of voicing my concerns about the growing number of punctures on my arm versus how they may be interpreted. I decided to ask the instructor to carry out the task and thankfully, was not met with any repercussions.
She returned to the room at some point to inform me that I would not be able to have an ultrasound to confirm / determine what “I thought” the cause was since the department was closed until the next morning. There was no evidence of my appendicitis I chart to be found or referenced. Another told me that he could order a mobile ultrasound, which never came. She entered again at some point in time and reminded me that my situation “wasn’t that bad”. However, this being Appendicitis II, I was better versed in the danger and unpredictability of “what I thought it was”.
I lay there.
I overheard from the nurses’ station:
So, I’m stuck with this old man and he asked me to cut his pear? As if that’s part of my job – I mean really, CUT HIS PEAR? I’m not here to cut his pear. I just couldn’t believe it. I just couldn’t believe he asked me to cut his pear. I don’t do that. I mean, would you do it? It was just ridiculous.