Last week I attended the Greater Manchester Health and Care Board meeting. The meeting was held in the wonderful surroundings of the Manchester Town Hall Council Chamber. It was a well-attended meeting with representatives from the partner organisations, the elected Mayor, and the Executive Officers of the GM Partnership. I was able to catch up with a number of former colleagues and friends. The agenda was impressive, but what was more impressive was hearing the voice of those ‘expert through experience’. This was a new approach to the meeting, and it was one I very much endorsed. The detailed papers were taken as read, so no time was wasted by rhetorical presentations of what we had already read – I am thinking of adopting a similar approach to my monthly Quality and Safety Committee meetings at Wrightington, Wigan and Leigh NHS Trust.
One of these presentations really held my attention. It was a presentation to accompany an update report on progress made with the Greater Manchester Framework to improve Palliative and End of Life Care. This week is Dying Matters Week, so it was more than appropriate to receive the update. There was a great deal of information I was unaware of. Each year 1% of the population die. In the last 12 months, 23,866 people died across Greater Manchester. 48% of these deaths were in hospital; 23.5% in their own home; 18.7% in a care home; and 6.1% of deaths were in a hospice. 75% of these adult deaths occurred in the context of old age, living with multiple long term conditions, and/or specific illnesses. Cancer accounts for 25% of all deaths.
Many of those that die in hospital actually have no clinical need to be there. There is much evidence to suggest that most people would not choose a hospital as their preferred place to die. We also know that health and care costs increase dramatically in the last 90 days of life. As a consequence it’s estimated that as much as 20% of all health expenditure is spent on end of life care. The GM EoLC framework addresses these issues and also a number of others around information sharing, access to specialist palliative services, variations in bereavement support services and most importantly the use of Advanced Care Plans.
Many of us are uncomfortable about talking about death, dying and bereavement. The consequence can be that we might not sufficiently plan ahead in terms of wishes and preferences. When I die, I want to be cremated, and have even planned what music I would like played at my funeral, which I would prefer to be a humanistic one. If it were at all possible, I would like a Viking Funeral a la ‘What we did on our Holiday’, a great film that captures my wishes so well. My loved ones know these details, and I trust them to carry out my wishes when I die. However, according to Tony Bonser (North West Regional Dying Matters Champion) many people don’t make plans, or feel able to exercise choices and preferences.
Tony was the ‘expert by experience’ who told us the story of his son Neil, who died from cancer, aged just 35. It was a poignant story, even though he felt his son had a ‘good death’. Partly because of this he was able to tell the story with humour and passion (you can get a flavour of what I heard here). His son was diagnosed with cancer, had 2 major surgical interventions, courses of chemotherapy and radiotherapy, with many stays in hospital and visits to outpatients. All these treatments did not cure the cancer and Neil died. Tony and his family didn’t understand the progress of the cancer journey and this made making decisions and choices very difficult for them all.
He reminded us all that what we say to our patients and their families might be not what they hear. Good communication is vital to ensure that people understand what is happening and what it is they are being told. Tony gently suggested that some health care professionals spend too much time talking and not enough time listening. I couldn’t agree more. When I used to welcome our health and care students to the University I would ask them to always make time to listen to what is being said and in particular what wasn’t being said. In the busyness of clinical practice this can sometimes be very difficult to do. However, effective communication is the key to people being able to makes choices, and making choices is the starting point in Advanced Care Planning.
Tony also asked us to remember there is likely to be a range of communities impacted by individuals’ end of life care and their death. All of us are, in lots of different ways, are connected to others. Helping these others to understand end of life care, and work through their feelings of loss is also an important task for us all.
Tony told how his son, in conversation with a Macmillan Nurse, asked if could go home. He did not want to be in hospital any longer. This was a day before he died, and it’s not clear if Neil knew his death was imminent or not. The Macmillan Nurse was able to arrange this despite it being ‘out of hours’ and not 9-5 Monday to Friday. For dying people there can be no such thing as ‘out of hours’ care. Neil went home to his apartment, surrounded by his possessions and things he loved. His family were there when later that day, Neil died. His story should be an inspiration to us all to ensure good end of life care is something that reflects an individual’s choice around life, living and dying.