Experiencing a good death at the end of a good life

Academia is a great place to meet folk. During the ‘active’ period of my academic life, I was fortunate to meet many interesting and generous people. One of whom was Andrea Pokorna. She is a nurse by background and works at Masarykova University in Bruno, Czech Republic. I met Andrea many years ago on an Erasmus Exchange programme. We met each other again, a few years later, when we were both part of a European Union funded Lifelong Learning Programme project entitled ‘Empowering the Professionalisation of Nurses through Mentorship’ (EmpNURS). It was a project that involved seven European countries: Romania, Finland, the Netherlands, Lithuania, Czech Republic, Hungary and the UK. It ran from 2010-2013 and was great fun, as well as having very tangible outputs to improve the clinical learning environments for student nurses. It was my last big research project.

A year after the project ended, Andrea invited me to speak at a conference exploring ‘End of life care’. This wasn’t an area in which I had particular expertise or experience, so I promptly offered the place to a colleague who worked in my School, and who was most definitely an expert. I learned a great deal from him, including the notion of what a ‘good death’ might mean. Unfortunately, he couldn’t attend the conference and as I didn’t want to let Andrea down, I went.

My paper started by critiquing the ‘Liverpool Care Pathway for the Dying Patient’ (LCP). This was a so-called evidenced approach to the care of the dying person. It was a protocol-based approach to providing healthcare treatments. In my opinion, such approaches can be somewhat indiscriminate, putting protocols before the person. Along with my long-term writing partner Prof Sue McAndrew, I have published many a paper on this issue, see for here for example. In the case of the LCP, it often became a self-fulfilling prophecy. If you were put on it, you were said to be dying – even if you weren’t.

By the time I was presenting my paper in Bruno, the LCP had fallen into disrepute as a compassionate way to care for a dying person. It was following the care provided to a relative of the then MP Rosie Cooper, that its inadequacy as a way to provide dignified and compassionate care at the end of someone’s life received the greatest political scrutiny. Rosie (no longer an MP) is now Chair at Mersey Care NHS FT, a stone’s throw away from where her relative was treated. The LCP was thus phased out as an approved approach. Alternative, and more patient-centred approaches were introduced. It was these that I spoke about at the conference, particularly the emergence of the Advanced Care Planning concept.     

This was an approach that engaged with an individual who might be facing a life-shortening condition, their family, and the professionals involved in that person’s care. It is an approach that builds upon conversations between all these folk. These conversations allow for careful and informed consideration being given to the person’s future wishes and priorities for their care. Whilst these conversations can happen at any time, it is good if they can occur before decisions about someone’s care become critical. One of my sisters and I were able to have such conversations with both my parents. At the time my mum was beginning to show signs of dementia. The four of us agreed that my sister and I would become Lasting Powers of Attorney for both my mum and dad, and for their health and welfare (finances).

Last Tuesday, my mother died. Her healthcare journey over the past couple of years has been interesting, but at times challenging. My mum spent a long time in an inappropriate acute setting, before being finally admitted to a residential care home. Along the way we have participated in several ‘best interest’ meetings with both health and social care professionals. They have always taken time to hear our views and in the main, these have been respected and acted upon.

I have no complaints about the care my mum received in the care home. My dad visited my mum every day and the staff there made him feel a valued part of the care family. When last week, my mum died, I would say she had a good death. She was pain free, comfortable, and had her husband and some of her seven children with her at the bedside.

My mum was an incredible person. As well as bearing seven children, she fostered countless others over the years. Alongside my dad, she worked with many more children and young people, whose lives I’m sure they enriched through their care, compassion and wisdom. It has been a strange, almost surreal week, but I write this blog in a spirit of thankfulness, knowing my mum is finally at peace.