A good enough death for whom?

My first encounter with a family death was that of my grandfather when I was seven years old. At the time I didn’t understand why I was excluded from grieving family members or the funeral service. I was aged 22 when my next grandparent died. At my grandmother’s instruction, following the church service men only were ‘allowed’ to attend the crematorium. These personal experiences were shrouded in concealment and to some degree, lack of closure.

As a student nurse the first patient death that I encountered was whilst working a late shift during my care of the elderly placement. I had just entered my second year of student nurse training. I was not allocated to the care of this particular patient during my shift but I remember having a discussion with the ward sister because I was aware that I had not been exposed to peri-death care, unlike most of my peer group. The ward sister was concerned for this junior student’s well-being (me) and advised that as it was a late shift and would be my first exposure to a patient death that she didn’t want me to be burdened with this experience overnight. On reflection this created additional anxiety for me; fear of the unknown. It was over a year later before a patient died in my care. As a third-year student nurse working night duty on a medical ward, the staff nurse and healthcare support workers expressed disbelief at my lack of experience. The staff nurse allocated an experienced healthcare support worker to support me to undertake the last offices for this individual female patient: an experience I still recall.

Now being a registered nurse for over 30 years, I have had varying experiences caring for people who are dying, their deaths, and interactions with their loved ones and after death care. I do have some very warm memories of involvement in the end-of-life care of individual patients, but I can still remember a small number of patients that I felt had suffered unnecessarily because of the omission or commission of interventions.

As part of my nursing career I moved from working with frail older people into a specialist stroke rehabilitation environment. During these few years my involvement in end-of-life care was negligible. Still specialising in stroke care, I changed roles and moved to a district general hospital. I was suddenly re-exposed to dying and death. It was during this time that the need for improvement in end-of-life care of frail, vulnerable older people became particularly visible to me. This was sensitised by experiences of older people who had suffered a stroke and were dying. At the time, it was recognised that about a third of stroke patients would die, however end-of-life care was only just being considered as part of stroke clinical guidance.

Paradoxically during this period my own dad, a young 65-year-old, died as the result of a catastrophic intracerebral haemorrhage. He died in the emergency unit of our local hospital. Whilst he was laying on a trolley in a cubicle, deeply unconscious and approaching death, there was mention of him being moved to a bed on a medical ward. For reasons I cannot adequately articulate I felt fearful. I mentioned to my sister, who is also a registered nurse that I was worried about the care he (and we) might receive on the ward. This experience still perplexes me. On reflection I was in shock, I may have been fearful of potential lack of privacy, being excluded and potentially ‘poor’ care; whatever poor care of an unconscious dying man might be. As it happened he died peacefully, in a cubicle, on a trolley in the emergency unit with numerous family members present. The irony was that at the time there was significant news coverage and concern about people being on trolleys in emergency and assessment units for significant periods of time. I subsequently moved into my current role as consultant nurse for older vulnerable adults which initially involved much ‘safeguarding’ work with older people. Whilst I am now rarely involved in the direct care of dying older people, end-of-life care continues to feature within my professional role. Poor end-of-life care for older people is threaded within both protection of adults at risk and the experiences and concerns raised by families. It remains an issue that warrants further exploration and understanding.

During the planning and undertaking of my doctoral study, my immediate family experienced a number of significant ‘life events’. These include two deaths, two marriages, five births and a number of hospital attendances and admissions. My eldest granddaughter ‘lost’ her great-grandfather ‘grandpa’; my extended family. He was expecting to live for months if not years. The day he unexpectedly died, my granddaughter then aged three, solemnly explained that ‘grandpa’:

“is going away. He’s going to the sky. I won’t be able to see him again (pause) because you can’t see people in the sky (pause) and the clouds, (long pause) but I’ve still got my grampy and gramps”

For me, this poignant nugget captured the essence of being human; love, loss, and being mortal. It also demonstrated her attempts at making sense of feelings of sadness and loss which accompanied her first (recognised) encounter with death. It also involved my interpretation of her sense making; a double hermeneutic as part and parcel of our temporal and relational lived world.

I began my research with the intention to explore nurses’ experiences in order to facilitate (perhaps naïvely) a healthy death for older people. This concept began to feel incongruent and was modified to a good death, which subsequently became a ‘good enough’ death. ‘Grandpa’ died unexpectedly, and it appears without a decision regarding resuscitation; the ensuing chaos created increased distress for his immediate family. Their experiences augmented a question that emerged for me during my research, ‘a good enough death for whom?’

Reflective questions:

How would you describe the ‘good enough’ death?

What values and beliefs underpin your description?

How can we, as health care practitioners, facilitate and support a good enough death for individuals?

Have you experienced a death? If so, who was the individual you were supporting? Was it a patient,  a patient’s family member, a patient’s friend, or yourself? Can you describe the potential different needs of each individual facing this loss?

What are your thoughts about the question  “a good enough death for whom”

If you wish to cite this material please reference Dr Denise Shanahan as the author.

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