In her 2021 article (Fuller, 2021), Clare Fuller said that despite having been a palliative care practitioner for nearly 30 years, she discovered that there was a lot she did not know about good end-of-life care when she became a carer for Jim, a family member. She reminds us that carers need guidance and support to do their jobs well. She wrote:
‘I could never have imagined how difficult the position of caregiver at end-of-life would be and…. the stress on us as a family cannot be overstated’.
‘Without my professional knowledge, I am unsure if we would have been able to support Jim to have a comfortable death at home’.
‘Yet… it is impossible to overstate the privilege and value of being able to deliver care’.
‘And…stepping into the role of a relative and caregiver in end-of-life care…led me to question previously held assumptions and identify potential barriers to the provision of end-of-life care that are uncomfortable to consider but important to raise’.
I have had a similar experience and arrived at similar conclusions. I stepped into the role of relative and caregiver in December 2015 when my wife, Eunice, developed myeloma, from which she was in remission 2 years later. After 6 months, in October 2018, she developed Creutzfeldt-Jakob disease from which she died in April 2020, a week after the UK national lockdown started. Eunice and I knew that end-of-life needs planning because we were both general practitioners (GPs). This helped us to feel confident to plan together for what I call a ‘healthy death’-one that develops a positive story of that time that is shared by those involved. We aimed for open discussions and broad participation. Our plan was written on the fridge door: ‘Parties, music, fresh air, fun’.
What is a healthy death?
A healthy death, like a healthy life, requires us to respond creatively to whatever happens, and from this, develop a positive, meaningful story-a story to be proud of. Its theoretical roots can be found in MacIntyre's idea of narrative unity (health means being able to tell our life stories as integrated wholes) (MacIntyre, 1986), Antonovsky's idea of salutogenesis (health means retaining a sense of coherence despite severe stress) (Antonovsky, 1987) and the 1978 WHO Alma Ata Declaration (health is physical, mental and social wellbeing, and not merely the absence of disease) (WHO, 1978).
I interpret these theories to conclude that each of us is the lead actor in the ‘feature film’ that is our own lives and the support actor in the ‘films’ of many others. Health is being able to make good ‘films’. Diseases can affect these films-in both good and bad ways.
Healthy deaths means that our life stories end well, and the life stories of those connected to us also move forward well-my ‘family’, ‘friends’ and ‘community’. It is a community development initiative. District and palliative care nurses are well placed to help carers with this because they are there at important moments, as I was soon to discover.
Obstacles to a healthy death
The 2022 Lancet Commission (Sallnow, 2022) argues that since 1950, dying in the UK has become overly medicalised and needs to be rebalanced.
‘At the core of this rebalancing must be relationships and partnerships between people who are dying, families, communities, health and social care systems, and wider civic society’.
The Commission describes five principles of its vision for death and dying:
- The social determinants of death, dying, and grieving are tackled
- Dying is understood to be a relational and spiritual process rather than simply a physiological event
- Networks of care lead support for people dying, caring, and grieving
- Conversations and stories about everyday death, dying and grief become common
- Death is recognised as having value.
The Commission is effectively calling for society to enable healthy deaths at scale. But how do you do this? And why is over-medicalisation an obstacle?
The fact that the western medical model is an obstacle to health (and healthy deaths) has long been known. In 1992, Macdonald (1992, p.30) explained that this is because it is an ‘engineering model’. We think of the body as a ‘complex machine… understandable through a microscope’ (p.31)… ’What is important is to realise the limits of (this way of thinking)… (and use it) ‘as part of a healthcare approach, not the entire approach’ (p.37).
Thinking of the body as a machine is valuable. It sees faulty components-‘facts’ and ‘diseases’-to be separately defined and instrumentally fixed. But if we want to follow the Lancet Commission's call to rebalance dying so that ‘at its core are relationships and partnerships…’, we need a science of connectivity. Egon Guba (1990) described three different kinds of truths (paradigms) termed-(post)-positivism, critical theory and constructivism. They distinguish singular facts, complicated connections and complex emergence. Along with Yvonna Lincoln, Guba described 4th generation evaluation (Guba, 1989) that integrates these three paradigms through cycles of collaborative inquiry and coordinated change in which facts are considered to be snapshots of stories-in-evolution.
Others have arrived at the same conclusion as Guba and Lincoln-the world is more dynamic, complex and changing than the ‘western medical model’ can see. Faith traditions, educationalists, ‘holistic’ and ‘alternative’ practitioners, and practitioners of experience use different languages to describe the complexity and ‘humanity’ they encounter. Even within the western medical model many acceptable languages and models already exist-for example, participatory action research and organisational learning. In healthcare, nurses are often ahead of others in using such approaches. District nurses (DNs) and palliative care nurses could lead the application of such approaches at end-of-life.
To develop healthy deaths at scale, practitioners, researchers and everyday people need to understand theories about connectivity (Thomas, 2006a). Without them, we lack language to describe ‘soft’ humanity and default to ‘hard’ engineering language that gets called ‘over-medicalisation’.
Caring for someone who is dying is difficult, but full of potential to do good. My experience as a GP, service developer (Thomas, 2006b), researcher (Thomas, 2018) and now as a carer, all lead me to agree with this statement by the Lancet Commission:
‘Conversations about death and dying can be difficult. Doctors, patients, or family members may find it easier to avoid them altogether… leading to inappropriate treatment’.
Eunice and I planned an open, positive approach to her dying. About 100 people enthusiastically embraced this. About six did not-they avoided open conversations and invented accusations that caused unnecessary harm. One person accused me of killing her. Another made safeguarding complaints (because I took her out of bed to join family events). Another took my son aside to say that ‘everything I was doing was wrong’. Their accusations were easily refuted, but the fact that they happened illustrates how difficult end-of-life can be. The DNs were particularly understanding and supportive.
Painful difficulties are common at end-of-life. Carers know this well, as Fuller (2021) explains:
‘One night, lying exhausted in bed…I tweeted “I could never have imagined how difficult this would be”. The response was instant, with people sharing stories…’.
End-of-life is full of potential to do good, especially when difficulties are positively explored. Difficulties are inevitable-the whole range of bio-psycho-social-spiritual difficulties. Many people have never come across anything so deeply affecting their lives before and naturally, miss opportunities to do good and minimise harm. Some simply project their anxieties and prejudices, and default to inappropriate treatments and thoughtless use of protocols. Some feel compelled to re-ignite long-standing complaints. Some simply want someone to blame. Some are just exhausted. Whatever the explanation, they need guidance and support to positively explore their concerns. Furthermore, it could leave them with skills of reflection and relationship-building that could serve them well for the rest of their lives.
Many in a network of friends want to help, but don't know how to, or fear it would be unwelcome. Examples of success (Thomas, 2009) and opportunities to engage can help.
Carers often see all of this. Many also have skills to make good arise out of such difficulties, but lack encouragement and opportunities to use them. Mentorship, support groups, training courses and recognition of how difficult and skilful their job is can greatly help.
Acknowledging these difficulties early in an end-of-life drama and providing guidance and support could help shape a healthy death. At scale, it could develop a network of local people with skills to manage a range of issues as a ‘compassionate community’.
This positive approach can also save hospital costs and prevent illness of carers-a common result of the stress they are under. In my instance, input from dozens of individuals, two schools, a general practice and two churches helped to build a caring community around our home, avoiding need for costly hospital care. A memorial for Eunice in September 2021 brought new people into this community, helping us to make a film of her life. (Remembering Eunice, 2021a)
An opportunity for change
Now might be a good time to plan for healthy deaths, at scale. The COVID pandemic and the war in Ukraine have made people everywhere aware of how important it is to face life—threatening challenges with dignity and strategically plan to integrate diverse actions.
In the UK, the NHS Long Term Plan (2019) provides a great opportunity. The plan describes a vision to integrate diverse efforts:
‘We will give people more control over their own health and the care they receive, encourage more collaboration between GPs, their teams and community services, as “primary care networks”, to increase the services they can provide jointly, and increase the focus on NHS organisations working with their local partners, as “Integrated Care Systems”, to plan and deliver services which meet the needs of their communities.’
Primary Care Networks (PCNs) are an important part of the plan in England-geographic areas of about 50 000 population where different organisations align their ways of working to enhance their effects on health. PCNs could develop strategies for healthy deaths by promoting community-oriented integrated practice (Thomas et al, in press)-a way to practice that develops multidisciplinary teams skilled at whole system operating. The National Institute for Health and Care Excellence Guidance (NICE) (NICE, 2019) already encourages health and social care practitioners to practice in this way and so many carers already see DNs as sources of wisdom for healthy deaths. I certainly did.
Routinely gathered data aligned to PCN areas could help to evaluate integrated practice. This could inform shared care for other complex issues, such as diabetes. It could help everyone to enhance health as well as treat diseases, in populations as well as individuals.
Things that can help to shape a healthy death
A healthy death means that I finish my life story well, and the life stories of those I have relationships with also develop well. People warm to this idea but often do not know what to do, or feel they lack permission, or fear being overwhelmed. Simply saying publicly how difficult and skilled caring is, especially as one approaches end-of-life, with guidance to consider a range of options, could help. Ways to help people to collaborate and think through their own plans (rather than simply adopt protocols or defer to others) could also help. The Core Caring Team, the Extended Community and the Dying Individual need different kinds of guidance and support because they have different roles and needs.
Fuller (2021) describes practical things that help an individual who is dying:
- Proactive planning - advance care planning, treatment escalation plans, DNA CPR Decision support etc
- Community care-involvement of primary care, community care, palliative care, specialist care, voluntary care etc
- Clear explanations-how the system works, what to do when things happen in the middle of the night, how to detect deterioration etc.
Other things help to build a community. Here are some of the things we did for my Eunice:
- Involve children-our two teenage sons and their friends helped with practical tasks
- Social events-a sequence of parties-dancing, singing etc
- Rota of visitors-sitting, holding her hand, playing music, reading stories
- Plan the funeral/memorial-we even rehearsed her funeral music with her
- WhatsApp group-this developed a life of its own-about 100 people participated
- Practical help-people brought food, took our children on holidays and sleep-overs
- Life story-a friend interviewed her and from this wrote a booklet of her life
- Memorial-18 months after her death (Remembering Eunice, 2021b)
- Film of her life-many in the extended network contributed to a film of her life (Remembering Eunice, 2021a).
Policies within geographic areas (PCNs in the UK) that could encourage healthy deaths:
- Provide structured guidance and responsive support for healthy deaths-for those who are dying, their care teams and networks, involving relevant organisations when appropriate, including universities and hospices, schools and faith communities, funeral directors, musicians and voluntary groups
- Train professionals and others to ask about and respect the beliefs and traditions of ill people and their carers-including the rituals they wish to embody, people they wish to engage and relationships they wish to strengthen
- Integrate primary, community and social services to support healthy deaths-linked to the same geographic areas. When appropriate, include organisations such as schools, pharmacies and faith communities
- Train local, multidisciplinary facilitation teams (LMFTs) (Thomas, 2006b) to encourage self-care, shared-care and networks of carers-to maintain positive household routines and build compassionate communities, even as care needs shift over time. They can encourage participation of local people such as neighbours (e.g. put out the rubbish) and volunteers (e.g. shopping). LMFTs could provide infrastructure to support local participatory democracy, valuable for many issues other than healthy deaths
- Routinely teach fourth generation evaluation-so researchers, practitioners, citizens and educationalists know how to use approaches to inquiry that illuminate inter-connected and co-evolving stories as well as singular facts.
DNs and palliative care nurses could lead this approach, supported by primary care, community care, social care, public health and politicians. In my experience, some already are, but without acknowledgement and training. Strategic development of this kind of leadership will make it easier for others-schools, faith groups, businesses, universities and others—to contribute and make collaboration for health an expected part of end-of-life. This could help develop an expectation that 21st century citizens are skilled at self-care, shared-care and collaborating to develop compassionate communities.
We can think of a healthy death as a positive story, co-created from many contributions. PCNs could expect health-related disciplines-primary, community and palliative care services, public health, social work, medical specialists-to develop this approach, within a society-wide collaboration to enhance health and avoid over-medicalisation.
In time, this could embed the skills at every stage of life, to make healthy deaths and compassionate communities happen at scale. My own experience shows how powerful the approach can be, with long-lasting effects. I see the effects 2 years after Eunice's death as people stop me in the street to give me a hug and tell me how much the experience affected them. Her story (our story) matters to them because they are part of it.