IJCAIP Featured Article


To be Human with Other Humans

A Caregiver's Story

Susan K. MacRae

For the past eighteen years, in my role as nurse, clinical ethicist, and the Deputy Director of the largest ethics centre in Canada and now as a transpersonal psychotherapist, I have increasingly come to understand the power of narrative as a form of healing.

For many years, I have personally experienced a powerful relief in the expression of my own stories. Perhaps these stories are powerful because they challenge the oppressive flatland and scientific efficiency that still defines healthcare despite many knowing that caregiving is an endeavor of human capacity. Perhaps the power of these stories is in acknowledging that I am not a robot and that the human, emotional, psychological, and spiritual dimensions of what I do are key if I want to be fully present as a caregiver.

Narrative as an art in health has far more potential for hope and change than simply a personal healing or confession. This became obvious when I started speaking these narratives in small groups and at large conferences over six years ago. I received standing ovations, and fearful confrontations from clinicians (who I imagined had been triggered into their own guilt, shame or fear of caregiving) and I realized that the narratives were giving people space to release tension and address unresolved experiences in their own practice. Forgotten and forbidden content was allowed to breathe.

When I started the narrative ethics group at the University of Toronto's Joint Centre for Bioethics, I began to understand that such narrative practice allowed a more robust and deeper human inquiry to emerge beneath the layers of intellectual dialogue about ethical issues in healthcare. The layers of reality that a narrative exploration uncovered added significantly, in my opinion, to the intellectual discussions we were having as clinical ethicists on notions of right and wrong.

Narrative is a form of peeling back beneath the ideas of what is happening in the external world of healthcare to reveal more of the internal world of caregiving. We know, for example, very little about the internal action of caregivers and what motivates them, what inspires them, what shuts them down and what causes them to leave the healthcare setting altogether. We still understand very little about people who endure sickness and even less about those who care for them. What is missing is the inquiry into the "I" and the "We" beyond the massive "It" that runs the mechanics of healthcare.

So this paper is a qualitative research endeavor of personal experience and "meaning making" in my own case. I reflect on and share a story made up of a series of shorter stories (taken from my own journals) that describe some of my experiences as a caregiver. My goal with this effort is to share these narratives and my own journey of "meaning making" (up to this point) in the hopes that perhaps they may spark one or two or ten other clinicians to tell their own stories and begin to bridge the intense isolation that I think is a tragic as well as inevitable part of the caregiver's experience. Maybe by telling these stories we may find something in our own individual and collective experiences that will lead us to deeper resources and new directions. This has certainly been true in my own case. And since many of the narratives I use in this article are from my experience as a student nurse, I particularly hope that these stories may support students beginning clinical practice and provide a model for them to express and validate their inner experiences in their early training. I share these stories most importantly because I hope this dialogue enriches the discussion around a comprehensive understanding of what it truly means to be a caregiver.

So let me begin my story.

As a clinician, while my colleagues concerned themselves with diagnosing and treating disease, I instead found myself fascinated with relationship. In my thirteen years in clinical practice, I became increasingly interested in what actually takes place in the known and felt experience of those who are sick and facing life-threatening illness and those who care for them and how they relate to one another. Like most clinicians, I have deep within me an impulse to serve, to help people, to make people feel better, to feel better in myself, to give, and most fundamentally to get to the bottom of something about what living has to do with Wellness or Peacefulness or Happiness. I want to be a "good" nurse.

So early on in my clinical training as a nurse, I reveled in relationship with others—my patients and my colleagues. Intuitively it seemed like the foundational basis for all healing and caring. But nothing could have prepared me for the actual experience of relationship that I encountered once I entered the clinical years. Relationships in that instance came with a bizarre, almost alien and disappointing feel to them. I spent a lot of time trying to get to the bottom of what a healing clinician-patient relationship looked like in healthcare so I could be good at the thing that mattered to me most. But it was challenging.

As my training progressed I noticed more about relationships. My relational contact seemed to circle around medications, equipment, laundry, schedules, staff availability and incidents of one form or another. I soon realized that there was nearly no time built into the clinical routine for human time with patients and even less for families. In that context, miraculously some clinicians still found a way to engage, while other didn't bother. And in response to this hectic pattern, some patients became fearful and demanding while others shut down, asking for nothing. I knew in my gut that contact, trust and relationship between people had to be a key to healing somewhere but soon learned I had no clue how to be a good caregiver or how to navigate these relationships in this context. So I watched and listened to those around me for guidance.

"Don't let them get to you," a resident once said to me on a night shift, when a patient of mine, riddled with head and neck cancer, exsanguinated--bright red blood pulsating across the room through her trach. The resident pushed me up to her face saying "Talk to her".

I mumbled, "It will soon be over my dear, soon be over." I think it may have been that same resident who, shortly after the patient died, brought me into the coffee room for a few moments before his "code" beeper went off again. "Don't let them get to you," he said. He touched me briefly on the right shoulder, almost connecting but not quite, spun around and left me under the fluorescent lights in a room smelling of burnt coffee.

Don't let them get to you? It seemed like bizarre advice under the circumstances.

When I arrived home my father asked, "How was your work last night honey?" I stood at the bottom of the stairs before heading for the dark basement where I would block out the light of the sun so I could fool my body into thinking it was night time. That morning, I was aware for the first time of the gap that existed between those of us who do this kind of work, and those of us who don't. It was also the moment that I began to realize the amount of distress, pain and intense suffering that I was being asked to bear and endure in my role as caregiver.

Ann was eighteen and she had been driving in a car after a party with her boyfriend. She had been drinking a little. She swerved on the road to miss a raccoon and crashed into a telephone pole, killing her partner Brad who had been riding in the front seat beside her. She had spent several days unconscious in the ICU. When she came to my unit she was swollen, bruised from head to toe, fading in and out of consciousness. I cared for Ann for two weeks as her primary nurse and each time she would awaken she would inquire about her boyfriend. I lied to her forty times. I lied to her because her doctor and lawyer had strictly instructed me not to inform her that Brad had been killed to allegedly protect her from the tragic news while she was still so terribly unwell.

On Friday April 14th, 1991, I met a policeman and Ann's doctor coming out of her room as I returned from my coffee break. The policeman informed me that he had just told Ann that she was facing manslaughter charges.

I fell backward to lean against the wall and hit instead a metal cart, my weight knocking some stacked blue absorbent towels onto the floor. "Better clean up that mess", the doctor said to me. I stood outside the door a deep trembling starting somewhere in the lower half of my body and then felt a suffocating tightening all the way to my throat.

"Don't let them get to you"

Emily's feces were the first thing I remembered about her. That morning I surprised myself with the insight that it had taken very little time in my role as a student nurse to get used to seeing other people's feces. When I first saw Emily, she was lying in her own crap and she had smeared it, in the fifteen minutes or so before I arrived into her room, on everything within her limited paralyzed reach, including into her mouth and all over her face. When I found her, my initial reaction was disgust. But as I turned to look into her face, I was drawn into her joy with the whole experience of it. "Look what I've done!" she seemed to say proudly, (in a world where I can do so little). My disgust eased into a strange sense of compassion and I began to laugh.

From behind me, a large voice boomed over this intimacy, as Emily's primary nurse arrived. "Emily, you are a disgusting pig," she said. As the nurse grabbed Emily's wrists, and tied them tightly in cotton gauze to the bedrail, her smile faded into shock, sadness and humiliation. Emily was sobbing. "Shut up Emily," the nurse said "you did this to yourself." The nurse then turned to me coldly and said, "Come on, get a basin, and clean up this shit."

"Don't let them get to you"

As a student nurse, my first impression of some other nurses was that the valve inside them that controlled expression or human emotion was nearly shut off.

We had been told in the morning during our orientation to this new unit, that the far hallway of the unit was where they did abortions. "Some of them are second trimester abortions requiring an actual labour so don't be surprised if you hear screaming," my clinical supervisor said calmly. We were then given our clinical assignments and released to the unit to find our patients. Later that morning, looking for a washbasin to help my patients wash up, I walked into the clean utility room. There directly in front of me, on the steel waist high table, lie about a 26-week-old fetus gasping for air in a round silver washbasin. His small round belly was shiny and taught as he pounded for air—filling and collapsing as his fists weakly pounded on either side of the cold basin. I met his struggle in utter disbelief , my mind racing back and forth. I don't now remember my other reactions. I only remember turning around and walking out.

Moments later I met my instructor in the hall. "There is a dying baby in there you know," I said to her as she came closer to me.

She looked behind me into the sterile room full of supplies and cold empty basins. "Oh," she said. "Yeah, like I told you, that's what happens here." And then she turned and walked away.

"Don't let them get to you."

The experiences from my early days as a nurse were not always tragic. They could be equally intense however.

I remember Ben more clearly than any other patient I cared for. Ben had asked me to help him die. Squirming in pain from post polio syndrome, we cared together for his paraplegic body day in and day out for months. For the first few weeks, he would ask me for extra medication to put him out of his misery. "For all I care", he said, "You can smash me over the head with a hammer". I don't remember doing anything special for Ben but something in our relating was noticeably different than it was with other patients. At first it was just a connection that was based on regular contact, care, and communication. This was a far cry from the usual dissociated busyness that occupied most of my days in the split second encounters my shift schedule allowed for me. Without any additional effort, Ben and I found something in our relating—a way to be together in our different roles. I eased his suffering in the only ways I knew how. It was a job we shared. Without realizing it or preparing for it, I found what I had always been looking for—a real healing relationship.

When I told Ben that I was leaving for a year to travel, which meant I would no longer be his primary nurse, the last words he said to me were "I will wait for you before I die."

In the end Ben waited one year to die. He passed away quietly in his sleep one week after I returned from my trip.

Some moments of caregiving deliver me to a place bigger than myself—perhaps to a place where we all share something transcendent and beyond everyday reality.

I remember doing a dressing change for a large abdominal wound on this jolly janitor patient who always lifted my spirits with his inquiring curiosity. He was the kind of man who could make every moment last longer than it really did. I remember he said, "Stop! Look!.. Sue.. No, I mean really look!" This man I cared for, his abdomen now healing from a wound six inches deep and eight inches wide that took three hours to dress each morning, said "Can you believe this body? It's fucking amazing. It's healing all by itself. I'm not doing anything." My face covered up to my nose with a mask, he looks into my eyes and calls me to his world. I look..and then.. I say, "Wow! It is amazing! Hmmm We are amazing!"

Let them get to you!

If there was little time built in for contact with patients and families, there was no time whatsoever dedicated to peer discussions about the emotional, psychological and spiritual challenges that were a regular part of this work. Instead I was told by my colleagues not to take things personally. I was told not to be weak. I was told not to be so sensitive and emotional. I was told, Don't let them get to you.

But what if they did? And they did. Then what?

I could cope with the busy schedule and the regular stress of the busy job, but I couldn't find an outlet for my inner feelings that were trying to make sense of this intense, unusual world. I soon found out that I couldn't talk about my vulnerability and I gave up looking for an experienced mentor to listen because he or she did not exist. Instead, I learned to keep such things to myself. In fact, I did more than that. I started to believe that I was too sensitive, too emotional, too "something" and maybe wasn't cut out for this work. I eventually started to doubt my own inner moral compass and stopped believing in myself.

All the caregivers around me were experiencing significant amounts of stress, many of them coping with unacceptable levels of suffering in a field that is supposed to be about healing and well-being. There were no offerings of support. I couldn't help but think if all caregivers continued to abandon each other in this way and no other forms of support were offered, in the end this could lead to a dismissal of the importance of moral and relational inner life all together.

It had only taken a few years out of my university training to find that my job had become about survival as I tried to deal with feeling victimized, helpless, powerless, heartbroken, angry, and shut down. Finally that same cool clinical objectivity I resented in those clinicians took over and left me with a coldness that seemed unnatural to my own heart. The "Don't let them get to you," had succeeded in my own case but I was still aware enough to know that the cost it carried was enormous.

I decided to "get away" and take a break and go traveling. I didn't know where my career in nursing would take me, I just knew I wanted to leave it for a while.

That was when I began writing. For a year, I wrote in my journal about my experiences and relationships as a caregiver. I remembered what a poetry teacher has once said to me "you have to write thousands of pages before your own story starts to tell itself." So I kept writing.

As I wrote the stories and told the stories to others over and over, at some point the art of storytelling and writing allowed me to reclaim aspects of myself that I had deeply buried. I started to write myself back into the meaning of my work. I started to reflect on the difference I had made and to remember moments in my work when I was engaged in healing at my best. I started to discover what being a nurse really meant to me.

Near the end of my travels I found myself walking off a street into a small rural hospital in Nepal and asking if there was anything I could do for the people there. Once they discovered I was a nurse from Canada they asked me to "set up" and run a recovery room in their OR. No experience since has given such a clear caregiving perspective. The teaching I experienced there was that "real relationship" flows out of real life and that this flow can't hide away from anything. True caregivers walk through the middle of suffering in the best way we know how and sometimes the only support a person has is a nurse or a doctor. That clinician is a lifeline. The treatments, the pain relief, the techniques we offer are important. But the true power of this human to human relationship in caregiving comes from the simple truth that we all will get sick and die one day. And somehow if caregivers can connect to the privilege of meeting a person who is sick or dying as part of this larger journey we are all taking together, then it is a journey that is most profound indeed.

Recovering in Nepal

I have found myself
working as a nurse
in the recovery room
in a hospital
in Nepal.

I just received a call
from one of the anesthetists
who told me they just
brought in a man
by a leopard.

Last week
it was
the missionary worker
whose hands were cut off
by the Maoists
and the tiny malnourished child
with a litre of pus
in her abdomen
with abscesses
of unknown cause.

Over an oxygen mask
I try to decipher
the last few words
of a man
dying from cancer
of his voice box
and then
try to look at the floppy
stillborn baby
long enough
to send a few brief wishes.

The absurdity of it all
for me
can be summed up
by the amputated leg
left in a bucket
in the recovery room
for all the pre and post op
patients to see.

Meanwhile the doctors stand
ankle deep in blood in thongs
in the operating theatre
while patients share bloody gowns
between them.

But for the first time
I honestly feel
deep in my heart
like a nurse!
Despite the excuse for technology,
the language barrier
the unlikelihood that
oxygen, electricity and water
would all be working at the same time,
I finally feel like I am making a difference.

It is the being here that matters
nothing more!
Nothing more
than standing
eyes fixed on yours
appreciating and feeling grateful
for the relationship
we all share
in belonging here
in our shared humanity.

And when I leave the hospital
past the pile of garbage
where cows avoid the dirty needles
to eat cardboard,
I walk along the ridge
lined by the great Himalayas
and the deep gorges of the Seti river
where bodies burn on the banks,
And realize that there is space here
and room in between the birds
and the butterflies
that seem to stick to the air
that is invisible to the rest of us.

And as I think
of the tragic stories from the day
and see suffering all around me,
the children
playing on the road
run to my side
and hand me flowers
and say "hello" or "Namaste"
or "What is your name?"

Motorcycles and
buses loaded with people
on the roof
honk as they go by each other
which wakes me up to a feeling that
mostly I don't know much more
than those cows eating cardboard
behind me
and my life could easily
dissolve into this moment
or any other.

But I do know
that there is an amazing beauty
in watching these moments
float by
into infinity
and to feel the longing
that tries to hold them here.
And realizing that
the hardest thing in life
is that a broken heart
is the only way I seem to grow.

Just then
I run into a monk  friend on the road and
ask him,
“What can we hang onto
when we’re dying.

He says,
only one thing
No object
No person
No belief
"Your Goodness"

By the time I returned to Canada, my inquiry into "real relationship" had evolved beyond anything I had learned about the clinician- patient relationship in my training as a nurse or in my regular work-life.  Deep inner reflection and narrative show me that "real relationship" happened in moments where I felt humble and grateful.  It appeared in moments where there was a widening, a deepening, perhaps an opportunity, no matter where I was, to put more space around all the "doing".  I realized that "real relationship" flowed out of a sense of awe when I stayed open to the possibility for transcendent moments that flow from simple activities, such as dressing changes and ordinary contact with patients--when I stayed open to my own heart's capacity for depth of relationship, love and compassion.  But it is also required that I approach suffering differently.  I've had to continue to learn how to stand in the middle of it with others and with myself and deepen in my capacity to bear it.  And by realizing that suffering can't be ultimately overcome, I have had to find a bigger context to understand the human drama unfolding on the stage in new ways that doesn't ignore my vulnerable mortality.

When I eventually did leave nursing some years later it was for different reasons than I set out in my original decision of disengagement.  I left nursing to go into clinical bioethics—a place where my interest in moral life and human relationship could become the focus of my work.  This eventually led to my work in psychotherapy where I now deal almost exclusively with the inner inquiry of living. 

My narrative work leads me to seek answers to the question,  How can we stop driving empathetic, humane, compassionate, loving responses out of clinicians in the first place? 

I believe it is time to create safe spaces for people to share their honest experiences with other colleagues who can support them and normalize these experiences—students, new grads and seasoned practitioners alike.  We also need to share and gather collective wisdom about how to manage the challenges in healthcare from a place of practical wisdom that honours the self-evident experience of practitioners.  And we need leaders who will support this.

We need to find better advice for our colleagues than "Don't let them get to you." We must allow each other the room and respect to face and process our experiences. We must heal ourselves long before we can hope to heal those we work with and care for.

Article originally published, August 2010  MacRae, S.K., "To be Human with other Humans, A Caregiver's Narrative" p. 287 – 289,  "Creative Arts in Interdisciplinary Practice Inquiries for Hope and Change", Eds. C. McLean, R. Kelly, Detselig Temeron Press, Calgary.

Susan (Sue) MacRae RN. is a Registered Nurse and has been working in the field of patient centred care and clinical ethics consulting and program development for 16 years. 

Her fellowship training at University of Chicago MacLean Center for Clinical Medical Ethics and at the Picker Institute in Boston positions Sue with a unique perspective that marries the needs and perspectives of patients with the views, responsibilities and duties of healthcare professional and administrators. Sue was formerly  the Deputy Director at the University of Toronto Joint Centre for Bioethics (JCB) and during her seven  year tenure there (2000-2007), was instrumental in forging its vision and ensuring the transformation of this centre into an internationally regarded organization. Sue is a champion of patient-centred ethics, narrative ethics and an innovator in building ethics and relationship centred competencies and capacity, a leader in scholarship in her work in clinical ethics program development and systems thinking and an innovator in education by virtue of her contributions to the growth of the highly acclaimed professional Masters of Health Sciences in Bioethics in Toronto.  Sue was the lead on the narrative working group at the JCB—a group focused on encouraging clinicians and bioethics to write about their experiences. Sue currently works as a clinical ethicist at the Centre for Clinical Ethics, (a joint venture of Providence Healthcare, St. Joseph's Health Centre and St. Michael's Hospital) in Toronto promoting values integration in hospitals and runs her own psychotherapy consulting practice.