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. 

In my case, getting to 70 years old calls for a glass of champagne!

Apparently, people like me are keeping the UK economy going. More of which later. First, last Thursday, Jane and I enjoyed a champagne afternoon, thanks to Sue, my best friend and longtime co-writer, who had gifted me the champagne for my birthday. Jane’s birthday gift to me was a week cruising the Calder & Hebble Navigation in a wonderful narrowboat. Drinking champagne, whilst relaxing on our little red boat, turned out to be a great birthday treat. Last Thursday was my 70th birthday, and as we sat in the sunshine, with the boat gently rocking, sipping our bubbly, it was a chance to talk, laugh and share seven decades of memories.  

Childhood memories were, for me, the hardest to recall. However, I did remember some of the TV programmes. Andy Pandy and The Magic Roundabout, and through my children’s and grandchildren’s eyes, the Wombles, Telletubbies, Pingu and In the Night Garden. Watching television as a child was strictly limited, and always a family event. The television was black and white and had just three channels. Compare that with what is available today. We have four giant flat screen TVs in our house but rarely watch any television these days. The choice of what to watch can be almost overwhelming.

The same is true of music. I first started listening to music via Radio Caroline, a pirate radio station broadcasting from way out at sea. It was the precursor to Radio One, Top of the Pops, MTV and all that followed. Now via my phone or Alexa, I have instant access to thousands of different music tracks. YouTube means I can also see my favourite groups, as well as hear them, and again, completely on demand whenever I want.

However, I have always preferred live music. I’ve seen many famous artists and bands play live; some of them more than once, including Bob Dylan, Rolling Stones, Rod Stewart, Leonard Cohen, Coldplay Led Zeppelin, U2, Coldplay and Pink Floyd. Sadly, I have never been to Glastonbury, nor the Last Night of the Proms, and I missed going to Woodstock due to being a couple of years too young. I also like to play music and have been collecting guitars for many years. Last year I was able to purchase a Gibson Les Paul (Studio) - if you know you know.

Over the years, I have had some great jobs too. I was a Sainsbury’s management trainee, living above the store, later a window dresser for a large tobacconist, as well as a healthcare assistant, Student nurse, Staff nurse, Charge nurse, Nursing Officer, Corporate NHS director, Lecturer, Senior Lecturer, Professor, Head of School, Dean, Pro-Vice Chancellor. I’m not sure which of these roles I enjoyed the most. I loved being a nurse, and the building of therapeutic relationships. But my time spent in academia was probably one of the most rewarding. It was (is) a real privilege to have my research and opinions published and then to see others making use of my work to further their own exploration of the world.

Keeping the UK economy going? Well, it appears that ‘70 is the new 50’. The International Monetary Fund in its recent publication The Rise of the Silver Economy noted that many folk in their seventies are fitter, sharper and healthier than previous generations. They found that people in their seventies today generally had the same cognitive and physical capability, as people in their fifties had over a decade ago. These folk who choose to continue to work, fill the skill gaps across many sectors. For some, continuing to work past the normal retirement age is a financial necessity. Others, and I include myself here, choose to work past retirement because it is a pleasure, and very fulfilling. That said, I won’t keep working indefinitely. I have other interests to nurture these days.

Ironically perhaps, while much of my research was based around ‘relationships’, I’ve not always been very good at these in my personal and family life. However, that is a topic for another blog maybe. I have, however, found my soul mate in Jane, my wife. We share a very happy life. It is a love story that is nurtured by taking time to make memories together. Last week, as we travelled slowly along the canal and river, we made many more.

Back in January, following Jane’s brain injury, I wrote a blog that considered the importance of a healthy life-work balance. We really do only have one life. We should never get so busy making a living that we forget to make a life. And occasionally, why not try and have a glass of champagne. It is good for your heart physically, and it’s good for your heart emotionally too.

Remembering those who gave us this day, and remembering to make every day count

Last week was an interesting one for sure. Thursday was VE80 (Victory in Europe) day. The day celebrates and remembers, in equal measure, the ending of World War II, 80 years ago (well in Europe at least). I was born 10 years and 7 days later. During the week leading up to the 8th May, we, in our little community up here on the Fylde coast, demonstrated our remembrance and thanks with flags, bunting and door knocking on each other to share thoughts and memories.

Unfortunately, on the Thursday, I was at work. It was our Board Day. At Board, I reminded folk of the ongoing conflicts across the world and the fact that we provide mental health care for those traumatised by conflicts old and new. We observed a minute’s silence before we started our meeting, and that felt like the right thing for us to be doing.  

Currently, I’m writing this blog somewhere on the Calder & Hebble Navigation. It is Day 3 of our canal journey. The trip was partly inspired by watching the Timothy West and Prunella Scales TV programmes showcasing their many canal trips, and partly by my desire to retire and live on a narrowboat. At the moment, neither seem likely, but Jane thought I should try a short break, living on a narrow boat. She organised the break as a surprise birthday present. And here we are. 

We should have been on the Rochdale Canal but because it’s been so dry, it was closed. We were very disappointed as both Jane and I are familiar with the area, and love the hills and towns that line its length. We were also going to have a birthday catch up with friends and family at the wonderful town of Hebden Bridge. It was not to be, and we will celebrate at Brighouse instead later today.

I was also disappointed that we were not going to be on the Rochdale Canal as it has a unique place in British social history. Despite being a hugely busy canal in its heyday, by 1952, most of the Rochdale Canal had fallen into disrepair and was unnavigable. It remained closed for many years. It took from 1974 to July 2002 (plus a grant from the National Lottery Millennium Fund) to fully restore the canal and to make it once again navigable along its full length from Sowerby Bridge to the heart of Manchester city centre. 

Interestingly, the restoration of the Rochdale Canal was helped by folk on the 1975 Job Creation Programme. This was a programme designed to provide jobs (often short term) that had some ‘social value’. Although initially it was aimed at young people aged 16 -24 and those aged 50 and over, it was later opened up to anyone who was classed as long-term unemployed.

As far as the Rochdale Canal was concerned, the Job Creation Programme was a great success. At its height, some 450 folk were working on its restoration. As the programme only allowed people to stay on it for just 12 months, over the years many thousands of people were able to acquire a range of skills and experience to help them gain fulltime employment. Being gainfully employed is good for our mental health and wellbeing.

The World Health Organisation notes that some 60% of the world’s population are employed. That in itself is clearly a good thing. Work can promote good mental health and wellbeing by providing a sense of purpose, and an opportunity to develop positive relationships with others. Being employed also establishes a routine and helps build self-confidence and a sense of achievement. The opposite of this is true of course. Poor and/or unsafe working conditions, job insecurity and oppressive organisational cultures are likely to have a negative impact upon our mental health and wellbeing.

For me, the wellbeing of colleagues is paramount. Like the rest of my team, we all regularly ask each other how things are, and are they okay? It is of course, okay not to be feeling okay. I’m also rigorous in ensuring folk take their annual leave; I know from my own experience that when you don’t take sufficient rest, it’s something that can lie you low. And that is a good place to end this blog. I’m going to sit and watch the world wake up before getting under way once more.

Remembering Mavis, who made the ordinary extraordinary

Back in 2004, one of my PhD student's successfully defended her thesis and was awarded her doctorate. She was a colleague, friend and a mental health nurse. Back in the day, she worked as a Community Psychiatric Nurse (CPN). I knew her from her university days. Sadly, after a battle with breast cancer, she is no longer with us. She came to mind this week, as I made my way back from spending a day interviewing, more of which later.

Mavis (not her real name) chose ethnomethodology as the way to undertake her research. Her study focussed on nurses working in acute mental health in-patient units. In true ethnographic style, Mavis spent many shifts, both as a participative and non-participative observer, in several mental health services across the North West of England.

Ethnomethodology, as an approach to sociological research, was first described by the American sociologist, Harold Garfinkel who explored how jury members used common sense, evidence and social position when determining whether someone was guilty or not. In his work, he was interested in understanding what the ‘social order of being’ might be in a particular setting.

For Mavis, this gave her a focus on how mental health nurses saw themselves as nurses, therapists and builders of therapeutic relationships with patients being cared for in an in-patient setting. What she succeeded in revealing was the often extraordinariness of what others (including the nurses) saw as ‘just’ being ordinary encounters.

So, helping a patient with their laundry doesn’t usually get described in nursing practice textbooks as a defined therapy. However, Mavis observed ordinary, everyday encounters like this and in so, doing witnessed either the development of a therapeutic relationship, or the nurturing and strengthening of an existing one. Over the 24-hour period, Mavis saw many such micro therapeutic interactions.

It was only in holding up the ethnomethodological mirror that the nurses were able to see the value in what many of them thought of as being routine, non-therapeutic encounters with the patients they cared for. It was a powerful message. Some 21 years later, it is still one that mental health nurses should not ignore.

Some of the work Mavis observed the nurses doing has since been ‘delegated’ to others. The development of the Support, Time and Recovery (STR) workforce is one such example. It is a contemporary example of what Mavis found within the mental health nursing workforce. STR colleagues provide what I think is a truly supportive service, and in many cases, the work they carry out enables a range of these micro-therapeutic opportunities. Over time, and with the appropriate support and training, such opportunities can be truly beneficial to patients. It is the little things that so often can be the really big things in people’s experiences of health care.

That interview that sparked my reflection? Well, the interview was for a new Chair at one of the mega group acute health care NHS Trusts. Being on the interview panel is one of the things I enjoy about my current role, and I recognise the great privilege I have to be involved at the start of something new, and something exciting. The interview last week was one of these opportunities. It was the second time I had been involved with this Trust; the first time they were unable to appoint. This time round, they did. I wish the successful candidate well; they have a tough job ahead of them. It felt like a good day, but of course, the unsuccessful candidates might not have seen it that way.

On my way home from the interview and being stuck (which feels almost inevitable these days) on the M6, I reflected on the day. I thought about the folk I had been sitting around the table with over the course of the day. Every one of them, including the candidates, were in different ways, ‘extraordinary’. Yet, you wouldn’t know this, if you sat beside them on the ubiquitous Manchester omnibus (younger readers think Tram). They were all good people. In their own way, each was making an extraordinary contribution to the mental health and wellbeing of others. In a highly troubled world, I felt sure Mavis would have approved.