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Empathy at the end of life: how to care without compromising your well-being

A cancer nurse specialist shares her experience of learning self-care in her new book

Cancer nurse specialist Janie Brown shares her experience of learning self-care and compassion in her new book

  • Nurses often feel unprepared to deal with very ill or dying patients, including having discussions about death
  • The importance of setting boundaries and practising self-care, and how it can help prevent burnout
  • Advice on how to cope and the value of team members support when caring for deteriorating or dying patients

Many of us became nurses because of our acute sensitivity to emotion, starting at a young age.

I have been a cancer nurse for almost 40 years. My empathy has been my greatest gift, although the journey has not been easy.

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Cancer nurse specialist Janie Brown shares her experience of learning self-care and compassion in her new book

  • Nurses often feel unprepared to deal with very ill or dying patients, including having discussions about death
  • The importance of setting boundaries and practising self-care, and how it can help prevent burnout
  • Advice on how to cope and the value of team members’ support when caring for deteriorating or dying patients
Illustration showing someone struggling with their emotions.
Picture: iStock

Many of us became nurses because of our acute sensitivity to emotion, starting at a young age.

I have been a cancer nurse for almost 40 years. My empathy has been my greatest gift, although the journey has not been easy. It hurts to care as much as we nurses do.

Unequipped to deal with a patient’s fears of dying

Regardless of the pain, however, most of us are grateful that we chose a life of service.

My years as a nursing student at the Edinburgh Royal Infirmary were among the happiest and scariest times of my life. I realised early on that I would need more guidance if I were to care for very ill patients with confidence.

This became clear the night I was assigned to care for a man in his forties who was dying of leukaemia. As I bustled around his bed trying to look busy, Mr Stevens* did most of the talking. I listened because I had no idea what to say.

My heart pounded behind my chest wall as he told me about his fears of dying, and of leaving his kids without a father. He reminisced about their family holidays on Islay every summer and how he would never get back there again.

I wanted to weep with him, but I remember gritting my teeth and telling myself I must not cry; it would be wrong to show emotion.

‘I learned that my presence mattered… that what the patient needed was for me to receive his pain and sadness and not pretend that everything was going to be okay’

My pulse slowed as I realised that Mr Stevens was talking himself through his feelings. I stopped moving around and instead pushed my anxious, sweaty back up against the wall to steady me.

I realised that it wasn’t up to me to guide him through the conversation. He knew what he was doing. He was finding his way through an unfathomable situation.

In those intense moments in that darkened room, all those years ago, I learned that my presence mattered, that my stillness mattered, that what the patient needed most was for me to receive his pain and sadness and not pretend that everything was going to be okay.

I credit this courageous man with the fact that I chose cancer nursing as my specialty.

The burden of caring ‘too much’ as a nurse

After I became a registered nurse and had two years of general nursing experience under my belt, I moved overseas to Vancouver, Canada, to work in a cancer hospital.

A few months into my new role on an inpatient symptom management ward, I realised I cared too much.

I carried my patients around with me, on the inside, on my days off. I worried about how they were doing. I dreamed about them. I wondered if I had said enough or done enough. I couldn’t switch off my brain.

The more experienced nurses told me that I needed to learn boundaries but I didn’t know what that meant then, so I kept quiet about how much I cared.

I remember looking after a woman in her thirties who had metastatic breast cancer. I couldn’t accept the fact that someone so young could be so sick.

Fiona* had been admitted for radiation and management of severe back pain. I can still remember her screams of pain and my feelings of helplessness.

‘Over time, I grew heavy with the burden of sadness, but I loved my job so I didn’t pay it much attention.’

I had to walk through the barrier of my own anxiety to move closer to her.

I warmed lotion in the palm of my hand and, with her permission, placed my hands into the small of her back. I willed the pain to go away with every gentle, soothing movement of my hands.

The touch helped Fiona to settle.

Many loved ones are afraid to touch a dying person for fear they will hurt them, but touch is reassuring, a natural human response to the call that comes from the loneliness of pain and illness.

Working with Fiona, and many patients like her, who had no hope of a cure or of survival, evoked an enormous well of sadness inside me, which I had no idea what to do with.

Over time, I grew heavy with the burden of sadness, but I loved my job so I didn’t pay it much attention.

Much of our work as nurses is sad and I thought I had to accept that fact and swallow my own grief.

When boundaries are not established, burnout follows

Over the next few months I found myself crying more easily at sad movies and picking fights with people I loved. Superficial conversations bored me and I noticed I craved solitude.

I thought about my patients and worried about them. I even obsessed about getting cancer myself.

One day, my head nurse called me into her office and asked me if I was okay.

‘Yes, why?’ I replied. ‘You look tired,’ she said.

I felt my shoulders heave and I started to cry. Months of unfixable suffering poured out of me, much to my embarrassment.

I left her office that day thinking I was weak and that maybe cancer nursing was not for me, remembering those nurses from my student days who told me that I needed to learn about boundaries.

Janie Brown, pictured left, says sharing feelings of sadness or failure with teammates, loved ones or a counsellor can help you ‘let go‘
Sharing feelings of sadness or failure with teammates, loved ones or a counsellor can help you ‘let go‘, says Ms Brown, pictured left Picture: Jim Glen

It was hurting me to care. I’d lost my vitality and I needed it back if I was going to survive in the profession.

This was a turning point in my nursing career, a place that many of us nurses get to because of our own suffering. I’d have to learn to take care of myself and deal with the emotions that built up in me, day after day.

Counselling support – a taste of my own medicine

I sought out a counsellor and the stories I had collected up in my heart poured out in our weekly sessions.

They weren’t just the sad stories of people who were too young to die, the horror of the intractable pain I had witnessed, the conflict in families that caused me to lose faith in humanity, or the system failures and the pain caused by professionals to one other, or to their patients.

The stories were also about my own perceived failures.

I was hard on myself, angry for not saying or doing something different, or not being brave enough to stand up to a patient’s wrathful husband, or an uncaring staff member.

Recounting my stories to someone who cared about me gave me a taste of my own medicine. Warmth, caring and deep listening slowly healed my broken heart.

The counsellor didn’t teach me coping strategies or give me advice. She listened and cared and I started to restore my energy and my commitment to the work I loved.

My tips for showing compassion to yourself as well as patients

  • Ask yourself if you are carrying your patients around, on the inside, when you are not at work?
  • Learn to take care of yourself and manage the emotions that build up, day after day
  • Tell your stories to a trusted loved one or counsellor
  • Share feelings of sadness or failure with your team members
  • Don’t be afraid to touch a dying person – remember that touch is reassuring to patients alone in pain and illness

Connecting with patients while maintaining self-care

I had begun to understand what self-care meant and what boundaries were all about.

I always thought that boundaries were about creating ‘professional distance’ between me and my patients. Some nurses I had met had achieved this, but they also seemed to have lost their humanity and authenticity.

I vowed to see how close I could get to my patients, without losing my sense of self and my own needs.

This took some practice.

That’s when I started to share my feelings of sadness or failure with my teammates, and stopped pretending that I should know all the answers, that I could bear any heartbreak and not bend. I felt more vulnerable, but stronger for it.

Over time, I grew lighter in myself and stopped feeling so burdened by the stories of heartbreak.

I was able to put the stories of peoples’ lives into a larger view. This was their life and I had mine. I couldn’t live theirs, nor change its course.

Nursing Standard’s well-being centre: podcasts, resources and advice

Learning to let go and share the responsibility of care

I was grateful for meeting each person, and gave my whole self to that relationship, knowing that at the end of the day one of my teammates would take over and I could let go.

I noticed I didn’t carry people around inside me as much, nor worry about them.

Instead, I had developed faith in each person’s capacity to live their life, or to face death, in their own unique way.

My empathy has become a gift I share – a measure of deep caring for my patients, and just as big a dose for myself.

I still sit with people every day who break my heart, but I don’t feel broken as a person, and that makes all the difference.

I have distilled my work with very ill patients into a book of stories, in the hope that it will provide families and caregivers with some of the wisdom I lacked in my early days of nursing.

Illustration showing two people sharing thoughts and feeling, in reference to the nurse-patient conversation
Picture: iStock

End of life decisions: honouring the nurse-patient conversation

An excerpt from Janie Brown’s book Radical Acts of Love: Twenty Conversations to Inspire Hope at the End of Life:

I felt her in the room before I saw her. The air crackled with anxiety as she entered.

‘Will you be giving George his chemotherapy today?’ Janet asked.

My heart sank. I had assumed that the decision to have chemotherapy was off the table now that George was barely responsive, dying.

Janet rocked from one foot to the other as she spoke. ‘We have to keep trying for the kids’ sake. George is too young to die and he needs to keep fighting. The doctor has agreed that we should give it one more shot.’

‘Did George make that decision?’ I asked gingerly, knowing it was a risk.

‘You can see he can’t make his own decisions now. He would want me to make the decision for him.’

She looked at me accusingly, as though my questions were an affront to their marriage.

My stomach flipped. Being the primary care nurse, I would be assigned the task of giving George chemotherapy that day. As George’s next-of-kin, Janet was now the substitute decision-maker.

I wished I’d had enough experience in those early days of my career to step towards Janet, to touch her arm, to look softly and directly into her eyes, and ask her if she was frightened of what was happening to George, to her life. My young nurse’s heart was beating fast. I was afraid of her.

‘The feeling of moral distress, twisting and turning in the pit of my stomach, made me anxious’

I wanted to have the courage to say, I am sorry this is happening Janet. None of it makes any sense. George needs you to hear that he has had enough of fighting. He’s not giving up; he just knows that he has come to the end of the road. He needs you to walk beside him for this part of the journey too, not just for the fighting part. The kids need you to help them accept what is happening too.

Perhaps Janet might have softened then, and collapsed into the relief of surrender. I didn’t have the trust, or courage, to move towards Janet.

The feeling of moral distress, twisting and turning in the pit of my stomach, made me anxious.

My jaw locked as the words that wanted to be spoken dried up in my mouth.

I attempted to explain. ‘I had a long conversation with George on Saturday night about treatment.’

‘Every moment counts now. We have to blast those cancer cells, if he has any chance at all.’ Janet looked over her shoulder towards the chemotherapy preparation room. Perhaps she was hoping an IV bag with George’s name on it would appear at any moment.

I felt the words I wanted to say float by me, lifted away by my fear and Janet’s fear, all mixed up together.

I heard the clip-clip of her high heels on the hospital linoleum as she scurried away towards the nursing station, the familiar sound of someone terrified to say goodbye.

My decision had begun to dawn on me from the inside out, like a secret illuminated by the act of truth-telling. I had to honour the conversation I had had with George a few days back.

He had told me that he was tired, that the chance of an experimental chemo working was minuscule. He knew that death was close and accepted it was time to let go.

Radical Acts of Love: Twenty Conversations to Inspire Hope at the End of Life, by Janie Brown (Canongate, 2020)

* Patient’s name has been changed


 Janie Brown is a cancer nurse specialist, author and founder and executive director of a non-profit organisation

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