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The unsung partners

Family caregivers are the unsung partner in a patient's care team, yet their enormous contribution to the health care system is often overlooked. As they move through the health care system beside their loved one, family caregivers experience firsthand the gaps in care and poor transitions between care settings. We have much to learn from the experiences of family caregivers.

Caregiver and patient - Make your experience count

June 2013
A case history, from a family's perspective
Jun 7, 2013 11:26 AM

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.



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