We were estranged from Claire’s husband (her Power of Attorney, POA) for several months - even before she was admitted to her healthcare institution. He refused us any medical information. He banned four family members from going on their property to see Claire. If another sister had not been at her healthcare institution the day she was admitted, we wouldn’t have found out for a month that she was there. When my sister Claire was admitted to the healthcare institution, her husband continued to try and restrict us in terms of enriching Claire’s life – for example: transporting her to our family home (the home she grew up in and in which another sister resides) for a full Saturday, or taking her on walks off the premises. He did his utmost to keep us from taking Claire out - even though he wasn’t spending any time with her. These actions really hurt Claire - she loved the change of setting - it made her happy.
Eventually, after many incidents of restrictions, and having to seek legal counsel, we were given full access to Claire. Her husband didn’t want her anymore and hadn’t for a very long time. We, however, did. We took her out on Saturdays and for walks during the week for about three years until she became wheelchair bound. Then, we visited her regularly at the healthcare institution and did our best to enrich her life. My two younger sisters and I had been with Claire throughout her whole stay at the healthcare institution. I visited her on average 4 times a week (sometimes more) for an hour after work while the twins visited her on Friday evenings, Saturdays and Sundays (sometimes more). Those visits included; depending on Claire’s capabilities feeding her, walking with her, pushing her wheel chair around both inside and out, just to get her off the floor, reading to her, letting her listen to music – she loved her music and would tap her foot while she listened. We tried to be creative and make her happy.
Eventually, her husband sold the matrimonial home and moved away to Windsor with his girlfriend. This was about 1.5 years ago. Needless to say we were very grateful as that meant there was no danger of seeing him or of him causing us (or Claire) any more pain and aggravation. By this time however, Claire was in a wheelchair, couldn’t speak and was eating pureed food. Unfortunately, about 1 week before Claire passed away, he came back. By the middle of June, Claire was seriously failing. She was on oxygen and morphine for pain. When her husband returned, much to the apprehension and consternation of her family, he sat in the room with her - I was able to convince him to let me take the night shift with Claire. I was on leave from work by that time and ‘allowed’ to do the night shift which meant I could have my beloved sister to myself without her husband around. This worked well until I came into her room around 7 pm. Her husband was sitting there. He left and my sisters arrived. They were going to stay with me until about midnight and then go home. At about 11:20 pm, her husband returned. He said he was staying the night, so we went home. As we were leaving, one of the twin sisters glanced back down the hall and Claire’s husband was watching us, as if to make sure we were leaving.
The next day I phoned and let the charge nurse know that I was available to give her husband a break if he needed a rest. NO ONE phoned me back to let me know anything was amiss. A friend went in at lunch time and was told NO VISITORS were allowed to see Claire. Her husband had returned to Windsor but would not let anyone in to see her. One of my sisters is a lawyer so we contacted her and she e-mailed him and told him it was illegal - her family had every right to be with her. He told the administrator that I was trying to force fluids down her - my other two sisters included. He told them she was at risk in our care. The administration banned us and everyone else so in her final hours Claire had no family members with her. The accusation was totally untrue. I am a former Registered Nurse and would never endanger a patient, let alone a much beloved sister. We had not given Claire anything by mouth for weeks. On Tuesday morning my husband and I went in to see the administrator and assistant administrator. The first thing they said was that there was a safety concern. IT WAS NOT TRUE. We weren’t even given the chance to defend ourselves. No one even asked the staff who has known us for four years to refute the allegation. My husband offered 24 hour Personal Support Worker care that we would pay for so we could have ‘supervised’ visits with Claire. This was at 10:30 in the morning. By 3:00 pm we still hadn’t heard back from Claire’s husband so my husband called the administration. Her husband had refused. Can you imagine? We offer to give his wife 24 hour care when she has very little time to live and he refuses (while he sits in Windsor!). At 3:30 my husband and I go back to see the administration - thinking surely we could work something out. I was beside myself with panic and anxiety. I was ONE floor above my dying sister and all I wanted to do was hold her hand and tell her I loved her.
The assistant administrator, when she saw us said, and I quote: “I don’t have time for you right now”. My husband got very angry and said this was wrong - how can you do this to her family? At about 6 o’clock that night (5:43pm to be exact), my sister the lawyer received an e-mail stating that we could have a supervised visit in the next few days from 1:30pm-4:30pm. That was maybe the cruelest thing of all. Claire was in Cheyne-Stokes respirations by then and her husband, as well as the administration, would know that. A trusted and highly respected person told me that on the phone. They knew that she wouldn’t last the night and yet they refused me and anyone else visitation. The cruelty is beyond comprehension. At 6:30 am a few days later I received a phone call from a staff member who was on the floor that night. She was phoning from a pay phone and said she could lose her job for this but Claire had passed away. How can someone have that kind of control that even staff members are afraid to tell a person they have seen regularly for four years that her beloved sister had died? Why couldn’t we be with her? We did nothing wrong. No one stood up for Claire - she would have wanted her sisters with her. No one stood up for us - her loving family.
Her husband would rather she die alone (as he had left already) than have one of us with her. How could that happen? We had no rights and her healthcare institution's administration shut us down - with no proof or any support, they denied Claire her family when she needed us the most. Something needs to be done to change the P.O.A. guidelines. Her husband was not even instrumental in her daily care. We were. But because of what he said, even though it was totally unfounded, our rights and Claire’s wishes went unheard. The fact that we couldn’t be with Claire those last hours will torment us and cause us anguish forever.
Perhaps like most people who have previously had minimal contact with the health care system, I had always thought very highly of healthcare professionals and hospitals, generally considering them epitomes of competence and virtue – I essentially trusted them unconditionally.
But, my experiences in advocating for the proper care of my father, Joseph, over a period of about ten years – from 2001 to 2011 – taught me that, though there are a great many competent, dedicated and honourable professionals in the system, mistakes do occur and, sadly, those involved rarely acknowledge, much less take responsibility for these mistakes.
As might be imagined, having been my father's primary caregiver and SDM for about ten years, I have a great number of stories to share regarding my experiences with the health care system.
Many of them are happy and heart-warming – some, in fact, even deeply moving.
For example, one of the nurses who cared for my father during the first of his two extended hospital stays, loved to dance – though her husband did not. So at a time when my father was at the 'wheelchair' stage of his recovery, she would regularly visit and 'dance' with him, as my father's favourite Italian folk music played happily in the background. I happened to visit during a couple of their 'dance sessions' and I was truly moved by her gentleness, kindness and warm affection towards my father.
Another nurse, who cared for him in his final year in hospital, when he was essentially bedridden, had grown up without knowing her own father; so, as she would later tell me, she had quietly 'adopted' my father while he was in hospital, visiting him often to just talk – or, on occasion, to ask for advice regarding her own life challenges.
And, yet another nurse would later tell me how, if she was having a particularly stressful day, because my father was such a peaceful and gentle man, she found it helpful to just go and sit with him – even if he was asleep.
Sadly, though, I experienced my share of difficulties along the way; and, many of my stories are quite harrowing and almost beyond belief – because of all of the mistakes that occurred and all of the unnecessary suffering that those mistakes caused my father, before I finally discarded the 'rose-coloured glasses' of unconditional trust in 'the system' and learned enough about his health issues to be able to help him.
It is less than a year since my father passed away, so there are many experiences that I am still not able to talk about; but, I have found that I am able to at least write about those experiences that ultimately turned out well.
So, for now, I would like to share just one of those stories – one which, though it relates to a particularly difficult hospital experience, has a decidedly happy ending.
January – June 2007: Duodenal Ulcer / Nosocomial Infections / Near-Fatal Adverse Effects of Prednisone In early January 2007, my father was admitted to hospital to receive care for internal bleeding caused by a duodenal ulcer.
But, an initially-projected 2-week hospital stay turned into an almost 6-month stay after a series of nosocomial (hospital-acquired) infections – Pneumonia, UTI (Urinary Tract Infection), C-Diff (Clostridium Difficile), MRSA (Methicillin-Resistant Staphylococcus Aureus) – and the severe adverse (toxic) effects of a powerful medication, – Prednisone, almost killed him.
Shortly after being started on prednisone, my father experienced the following adverse (toxic) effects: severely compromised moods and cognitive function; severe diabetes and total insulin dependence; parchment-thin and extremely fragile skin; severe heel ulcers that eventually necrotized, putting him in danger of his loosing his lower limbs; and, severe loss of body weight, from about 170 to 110 lbs –- among, perhaps, other problems. (At his worst, my father looked very much like a WWII concentration camp prisoner – truly, virtually at death's door.)
Sadly, though, in spite of the obvious drastic deterioration in my father's condition, his entire medical team was in complete and 'determined' denial about the near-fatal adverse (toxic) effects of prednisone, repeatedly insisting that my father was “getting the very best medical care possible” and that Prednisone “may well have been keeping him alive” – as if repeating these obvious untruths enough times would ultimately make them true, or at least convince me that they were true.
Furthermore, they continually reminded me that my father was '87 years old', and that his condition was the result of the natural decline of a man his age, and that we should not expect him to return home.
“Be sure that his affairs are in order.”, I was told, many a time.
On two occasions, I asked for family meetings with my father's medical team to discuss his condition and possible remedies; but, his MRP (Most Responsible Physician) refused to attend, insisting that he was “satisfied with [my] father's progress.” (Honestly, that's exactly what he said.)
That absurd impossible statement remains forever fixed in my memory – like some unbelievable 'doublespeak' out of George Orwell's prophetic dystopian novel on the dangers of unchecked totalitarian power, entitled '1984'.
The situation would have been laughable, had it not been so profoundly tragic, as my father's condition continued to worsen.
As a result, it was only after I provided the medical team with several peer-reviewed articles that detailed Prednisone's known adverse effects, and I persisted in my efforts for a reconsideration regarding 'Prednisone', that my father's doctor eventually, though very reluctantly, agreed to slowly taper the dosage.
Thankfully, within days, his condition began to improve noticeably; and, about a month later, with 'Prednisone' having been stopped, and with all adverse effects reversed, my father was able to leave the hospital and return home, the same way that he had entered –- walking on his own two feet.
Everyone at the hospital was astonished -- and, naturally, my family and I were most grateful.
And, my father?
Well, after about a month of home rehabilitation had made him strong enough to resume his self-taught post-retirement hobby of wood-sculpting – with only hand tools and working on large 6-7 foot tree trunks, believe it or not – in keeping with his reserved understated nature, he was 'quietly jubilant', simply happy that he was still alive to pursue his passion.
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.