When nurse and carer roles collide: the pressures of nursing a dying loved one

Delivering end of life care may be familiar territory professionally, but caring for a family member is a very personal challenge

Delivering end of life care may be familiar territory professionally, but caring for a family member is a very personal challenge

Looking after a family member can mean navigating a complex dual relationship Picture: iStock

In late 2017, I began an intimate and very demanding relationship with cancer.

First, my husband Peter underwent a series of investigations. He was eventually given the all-clear but then, on the same day in March 2018, both my dad and my brother-in-law Ken received their cancer diagnoses.

My dad had surgery and embarked on a complex rehabilitation, which involved him being re-admitted to hospital. Peter and I took on the full-time caring responsibilities for his brother while continuing to support my mum and dad. Fortunately, my dad has now been cancer-free for 12 months.

The balance was tipping from being a sister-in-law to being a nurse

Ken’s diagnosis was metastatic prostate cancer and his only treatment options were palliative.

In the early months, my relationship with him was 80% sister-in-law and 20% nurse. As a sister-in-law, I would help with his shopping and housework and as a nurse I would pave the way for the community palliative care team, talking to him about a DNACPR (do not attempt cardiopulmonary resuscitation) decision, his preferred place of death and his will.

By the time I retired in November 2018, Ken was becoming very frail and my husband and I were visiting him at least twice every day. Peter retired several years ago, and we made almost every visit together. There was no one else, apart from the professionals, involved in Ken’s care.

‘At times I could interpret Ken’s comments as lacking in concern for me. On the other hand, I knew he respected and trusted my skills as a nurse’

By February 2019, my brother-in-law had become housebound and during a GP home visit in April we were advised he might only have 1-2 weeks to live. In fact, he was with us for another six months.

Respected for my nursing expertise

During that time, my relationship with Ken changed. To him, I became 80% nurse and 20% sister-in-law. On entering his home one day, we were welcomed with: ‘Hi bro’, it's lovely to see you again. T (that is what he called me) I need o/morph.’

There were times when I could interpret this as a lack of concern for my welfare. On the other hand, what I always took from the thousands of interventions that were to follow was Ken’s respect for my skills as a nurse and his complete trust in my ability to work with all those involved in his care.

‘Some conversations were undoubtedly enabled by my being a nurse because they gave him the opportunity to ask questions such as “Will you be able to manage my pain?”’

In the months from April 2019 until his death in October 2019, I took myself to a place I had not been before.

Coordinating and delivering one-to-one care at the end of life was not a new experience for me, but most of my physical care of patients had been delivered in hospital wards and now I was being trusted to deliver care in the home.

Although he lived less than a mile away, it would have been easier if Ken had lived with us, but we understood his own home was his preferred place of death.

Open diary became an information hub and ensured Ken’s voice was heard

In 2018, Ken started to keep a diary. This became a page-a-day diary, which we both contributed to and encouraged the healthcare professionals who visited him to read. It was pivotal in the coordination of his care and it provided me with the means of recording all of my observations, assessments, actions and evaluations.

Ahead of any scheduled visits, I would write a summary of care, drawing attention to the identification and management of any new risks, such as dysphagia, and agree this with Ken. Getting his agreement or input on the summary enabled me to ensure his voice was not lost.

'Even though Ken’s nurses knew I was his sister-in-law, our conversations were nurse to nurse’

By April 2019 we were visiting Ken at least three times daily, and in the final months every two or three hours. We had plenty of time to talk about death and to understand Ken’s wishes. Some of these conversations were undoubtedly enabled by me being a nurse because they gave him the opportunity to ask questions such as “Will you be able to manage my pain?” and “How do you think I will die – will I just go to sleep?”.

Having those conversations throughout 2019 gave us plenty of time to contact the National Repository Centre in Nottingham to make enquiries about body donation, which had been Ken’s long-held ambition; an ambition that has been achieved.

A nurse who is also a carer for a family member may find the relationship changes as illness progresses
Picture: iStock

When a family carer happens to be a nurse – what I have learned

To fellow nurses who find themselves in my position, I would say: be prepared for the relationship change and think about how you will keep a balance between your personal role and your role as a nurse.

To nurses who are part of the healthcare team in a situation where end of life care is being given by a relative who is a nurse, I would say: 

  • Consider how the person’s relationship with that person might be changing because they are a nurse
  • Consider or ask if they are okay with that
  • If not, can changes be made to the package of care?

Nurses caring for Ken related to me as a fellow professional 

When engaging with the professionals involved in Ken’s care I was always clear that I was his sister-in-law.

However, some of those professionals knew me and the respect they showed me – and I them – initiated a nurse-to-nurse conversation rather than a nurse-to-family conversation. Sometimes this meant the conversation would end without them asking me “and how are you coping?”.

At the end of September, a district nurse rang to say she had visited Ken. She very kindly said: ‘I have read the diary and just wondered if you were both okay and do you need any more help?’.

My honest answer was: ‘I know we are nearing the end. We will manage – but thank you for asking. If we had another six months to go, we could not sustain this level of care and we would need help.’

Tracey McErlain-Burns has been a registered nurse for 37 years. Before retiring in November 2018 she was interim chief nurse and director of integrated governance at Tameside and Glossop Integrated Care NHS Foundation Trust

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