In the time that Living Well Dying Well has been operating, we have seen growing interest in the subject of death and dying, perhaps led by the mainstream media who regularly cover the subject with human interest stories and issue-led features and commentary. Alongside this, community and grassroots initiatives and a new sense of empowerment – the right to choose – are changing the landscape in ways that exceeded our hopes.
Yet in contrast there has been an unsettling development in the way health professionals deal with people who are dying. It seems ordinary ‘natural’ dying – the gradual decline into death as a natural consequence of life, requiring simple compassionate ‘comfort care’ – is less and less the norm. Nor, as dying has become more medicalised in a system where intervention is on the increase, is death seen as a significant, profound and spiritual transition. These two trends are clearly at odds with the flourishing of public interest in ‘natural’ dying.
How can we do death differently?
In setting up Living Well Dying Well seven years ago I was looking to build a different vision of how we approach death and dying. I believed in pioneering ways to do this and could visualise a better future although on first ‘take’ it looked to be totally incompatible with the current reality. So when Bill Sharpe presented the Change and the Three Horizons Model at the Transformative Innovations for Health gathering last November it was a great relief to discover that I mainly operate from a Horizon 3 (transformative future paradigm) position. Bill’s presentation helped me understand some of the struggles I had encountered when my Horizon 3 had come up against Horizon 2 (innovation) and/or Horizon 1 (business as usual) thinking. I wish I had known then what I know now. But thank you anyway, Bill!
What was the vision for doing death differently?
When I wrote about the end of life doula role and training in this journal seven years ago (Elliott, 2011), the aspiration was not to create another layer of health or social care service, but rather to recognise that ordinary people within our communities value relationship and have the capacity and willingness to offer support to people who are dying.
The role of a doula is a non-medical one. Think back only two or three generations when there was always someone (generally a woman) in the neighbourhood, who was called in by families to help out at a death – she was often the same woman who was summoned to help with birth. When we lost this role, death gradually became removed from everyday life and hence our relationship with it. Doulas do not replace medical or nursing expertise, but rather, they add a missing layer, acting as an expert family member, a mentor or facilitator and a source of information or guidance.
As a society, we have become so unskilled at being around death, so having the companionship of someone who isn’t afraid of the territory is tremendously reassuring; not another specialist, but someone who is informed, feels comfortable with the unknown, and is willing to walk alongside and be of support in whatever way is needed.
What changes have we seen?
I would like to be able to write that the climate had radically changed over the last seven years. Yes, on the one hand death is ‘out there’ much more, thanks to the media and to some of the notable initiatives highlighted below. However, there is still considerable aversion to facing up the inevitability of death. Sadly too, inappropriate medical intervention continues to be carried out on frail and elderly people, which begs the question ‘who are we doing this for’?
The change we would like to see
A group of elder-care specialist doctors in North Wales recently began a public campaign: #havetheconversation – highlighting the need for patients to be protected from the over-use of cardiopulmonary resuscitation (CPR). They point out: ‘as the law currently stands in the UK, you do need to ‘opt in’ to a peaceful death. I love the language in their flyer: ‘Don’t leave it too late to tell your doctor you want an “I want to die in my own bed” form.’
As these geriatricians point out, ‘CPR is not a treatment for ordinary dying’. And yet many people have told me of their experiences of crash teams in hospitals, or paramedics in the home and in nursing homes swinging into action, administering CPR to frail, elderly and terminally ill people, as a routine response to ordinary death. CPR is a brutal procedure, yet it is now considered the normal thing to do even when faced with such vulnerability. This is a mystifying development, and one based on assumptions that we really have to confront.
A Nursing and Midwifery Council disciplinary hearing last year demonstrated how badly we have lost perspective.
An experienced nurse who had been called to see an elderly nursing home resident found her ‘waxy, yellow and almost cold…not breathing’. So, having checked that ‘there was no pulse or vital signs of life’, she considered the resident to have already died. However, the NMC view was that as no Do Not Resuscitate Order was in place and the resident’s death was unexpected, this nurse had been under a professional obligation to attempt CPR and to call for emergency assistance. The nurse agreed that she had been acting outside of her competence on the occasion in question because she was not qualified to certify death (Ford, 2017).
Don’t leave it too late to tell your doctor you want an “I want to die in my own bed” form
She received a 24-month caution. But did she truly deserve such a blot on her record for giving what most people would consider to have been sensitive end-of-life care? In the blog entries following a Nursing Times article one contributor suggested that certifying and verifying death are not same and that any layperson would have correctly identified the resident as dead. It seems the NMC has created a precedent that implies nurses should start CPR on clinically dead patients and keep going until paramedics arrive. So we must take seriously that ‘as the law currently stands in the UK, you do need to opt in to a peaceful death’.
The power of choice and community
The most significant change has come about through individual and community initiatives, and this is where I hold out most hope for lasting change. A growing movement is now raising awareness, encouraging us to think about death, make choices and have clear plans for it. The Dying Matters network has facilitated the activities of many organisations like Living Well Dying Well to be part of this network.
The rise of death cafes is a beautiful example of a spontaneous grassroots initiative. Pioneered by Jon Underwood in the UK, it has spread worldwide to 52 countries. Many of our doulas are active in setting up and hosting these events.
Three doulas in Todmorden instigated The Pushing Up Daisies Festival. This west Yorkshire event demonstrated how well community engagement, with kindness and creativity at its heart, can bring people together in a powerful and meaningful way. The festival created lasting connections and has built a communal feeling of confidence, resilience and a shared understanding of many aspects relating to death and dying.
The Compassionate Neighbours project initiated by St Joseph’s Hospice has done much to mobilise the goodwill of people volunteering in the community. This project created a network of trained people who offer their time, companionship and support to people living in their community who are coping with serious illness old age and terminal illness people.
As it has turned out Living Well Dying Well doulas have discovered they have a much bigger educational role than we first imagined. We often hear: ‘We didn’t know we were allowed to do that’. This could be related to refusing treatment, making choices about dying at home, or having the body remain at home after death. In response, many of our doulas have chosen to specialise, offering support to people to make their choices known through a Living Will or Advance Decision. We recognise this as a priority especially when, as we see above, the onus is on the individual to opt out from treatments they may not want, which prolong but do not necessarily enhance life.
The Compassionate Frome project launched in 2013, though not specifically related to death and dying, provides even more evidence of the power of community. George Monbiot (Monbiot, 2018), writing in the Guardian recently, highlights how local GP Helen Kingston ‘… kept encountering patients who seemed defeated by the medicalisation of their lives: treated as if they were a cluster of symptoms rather than a human being who happened to have health problems’. The project supported health connectors employed to help people plan their care, and community connectors who helped people find the support they needed: anything from handling debt or housing problems, to joining choirs, lunch clubs, exercise groups or writing workshops.
…while across the whole of Somerset emergency hospital admissions rose by 29% during the three years of the study, in Frome they fell by 17%. Julian Abel, a consultant physician in palliative care and lead author of the draft paper, remarks: “No other interventions on record have reduced emergency admissions across a population.”
Helen Kingston reports that patients who once asked, “What are you going to do about my problem?” now tell her, “This is what I’m thinking of doing next.” They are, in other words, no longer a set of symptoms, but people with agency.’
The vision continues
Let’s consider that ‘when faced with a terminal illness, medical professionals, who know the limits of modern medicine, often opt out of life-prolonging treatment. An American doctor explains why the best death can be the least medicated – and the art of dying peacefully, at home’ (Murray, 2012).
Why would our patients not want the same? ‘Agency’ is powerful, and as health professionals who aspire to recognise our patients as self-determining, we need only to see them as human beings like ourselves. It comes back to simplicity: how would I feel; what would I want? If am at the centre of my own life – in my case this includes my spiritual journey, the joy of sharing with my husband, my friends, my colleagues and my community – then if at all possible, right up until the moment it ends, I want to preserve the integrity and quality of this life. Through all its challenges and ups and downs, my identity, values and the very smallest things have importance and meaning.
If I become too vulnerable to assert myself, I want to know there will be someone else – partner, friend, doctor, doula – who will do everything they can to uphold my wishes, so that I can let go into the journey. I want to know I will be given comfort care and be supported therapeutically so that I am not distracted by symptoms, from the task at hand. I believe most of us feel the same and would like this wholeness to be reflected in their dying. As doulas our contribution to change and our primary aim is to be available as companions to be fully present and responsive in supporting the journey of the person who is dying, and those who care about them; most importantly to facilitate them in making choices and upholding their right to have them respected.
As citizens, change will require us to have conversations in our families, to make sure we insist on honest discussions with health practitioners, and recognise that making a Living Will or Advance Plan is as important as writing a legal will. Though this really isn’t such a radical innovative vision, the current culture around death and dying is not yet amenable to it. If we want to see change, and take dying out of the hands of interventionist experts, each one of us will have to reset our compass and make absolutely sure that it points unequivocally towards having a peaceful death.
- Elliott, H (2011) Moving beyond the medical model. Journal of holistic healthcare 8(1) pp 27–30.
- Ford, S (2017) Nurse handed caution for not carrying out CPR on ‘clearly dead patient’. Nursing Times, 7 March.
- Monbiot, G (2018) The town that’s found a potent cure for illness – community. The Guardian, 21 February.
- Murray, K (2012) How doctors choose to die. The Guardian, 8 February