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This month we speak to Dr Libby Sallnow to find out more about the Lancet Commission on the Value of Death, for which she is the lead author.
What is your role and what does it involve?
I am a palliative care consultant and researcher. I spend part of my week working for the NHS, caring for people dying at home and the remainder of the week asking questions and conducting research on how experiences at these times could be better. Although it can bring with it challenges, the different roles force me to take different perspectives, experiencing the reality of dying at home whilst also asking critical questions about mortality, caring, connection and symptoms. I enjoy the opportunity to think holistically, integrating physical, social, psychological and spiritual dimensions in my research.
I work with different teams around the world to explore these questions. I am currently collaborating with teams in Belgium and Kerala, India. There are many different models of how to support people at the end of life at home and I have helped build the ‘compassionate communities’ movement – an approach to caring that involves communities alongside healthcare professionals.
How are you improving the health of the public?
Death, dying and grief are universal events that will happen to us all but our experiences at these times have changed dramatically over recent years. People previously died at home, supported by family and friends but with limited medical support or pain relief. Contemporary healthcare has brought many benefits but the majority of people in the UK now die in hospital, away from friends and family, often with escalating healthcare interventions that actually prolong dying and increase suffering. This was the starting point for a new Lancet Commission on the Value of Death published last month and for which I am the lead author. This was an ambitious project which took place over four years, aiming to understand how people are living and dying around the globe, to explore the unnecessary suffering that is taking place and how things could be changed. We state that death, dying and grieving are not ‘medical’ issues, they are societal ones, but they have come to be seen only in medical terms.
This means death has become unfamiliar to many people in high-income countries, and increasingly in low- and middle-income countries, and people are often much older when they first see someone dying. It is obviously a good thing that this happens later in life, but it means people are unfamiliar with how to care for someone, what the changes mean as someone dies and how to manage them. In the report, we advocate for an increased awareness and confidence in these issues – developing everyone’s ‘death literacy’ – the knowledge and skills needed to support people as they die and grieve.
A further challenge is access to palliative care services, the WHO estimates that only 14% of people in need can access palliative care services. A great challenge in developing services is training clinicians in how to support people and families at these times. Courses can be expensive and difficult to access. With colleagues at the WHO Collaborating Centre in Community Participation in Long Term and Palliative Care, India and St Christopher’s Hospice, London, we set up a new accessible fellowship course to meet this need. We have trained nearly 400 people across more than 50 countries and are already seeing the impact of this capacity building.
What do you find most interesting or enjoyable about your work?
Seeing research that can translate directly to improving people’s experiences at the end of life. A good death can mean different things to different people but core themes such as connection, having important people present, finding meaning and purpose are common but so often get missed when the focus is just on the medication or getting the right bed in someone’s living room. Demonstrating through research that it is possible to keep these essential parts of someone’s care centre stage whilst also relieving their pain and preventing pressure sores is enormously satisfying. You only have one chance to get these things right.
How have cross-disciplinary collaborations shaped your research?
When I was a junior doctor, I stumbled across a book written by a sociologist, Allan Kellehear, called ‘Health Promoting Palliative Care’. It was strange to see two disciplines that I had previously thought were completely opposed brought together and it was a turning point in my career. I learnt how insights and practices from the disciplines of public health and health promotion absolutely had a place in palliative care practice – a discipline that before this was seen more as a bedside, clinical discipline. You can support people and communities upstream, to build capacity and resilience at the end of life and reduce unnecessary suffering in the same ways you can work with communities to reduce smoking or increase breastfeeding rates.
The cross-disciplinary field of public health approaches to palliative care has grown significantly over the past two decades and draws on community development and activism, sociology, epidemiology and biomedical disciplines. I have also helped build the networks that are necessary to support the cross-disciplinarity that has been essential to the public health palliative care movement globally.
What advice would you offer to others interested in developing cross-disciplinary research?
I have worked with a range of different disciplines in my research, and I would say the most important skill to bring is to be willing to question your own practice, knowledge and expertise. We often hold on to the way we have always done things and can be threatened when this is challenged or criticised. Some of my most important experiences, when I have learnt the most, have been when others have held a mirror up to my established practices and challenged me to think in a different way. That is the real contribution of cross-disciplinary collaborations.
What's next on the research horizon for you?
In the Lancet Commission we set out a ‘realistic utopia’, a radical vision of how living, dying, caring and grieving could be better in the future and we make a series of recommendations to support this. Examples of aspects of the realistic utopia exist in practice around the world already. My next research plans are to understand what the core components are of these successful projects and understand how to build on and translate these examples across settings. Understanding the range of influences that determine how people live, die or grieve, I will take a systems approach, building on the use of systems thinking in tackling complex challenges such as obesity or homelessness.
If you could make one change in the world today, what would it be?
For death, dying and grieving to be understood as social not medical events. Healthcare services must see dying and grieving as a part of health and wellbeing, not a failure of health and wellbeing. The final sentence of the Lancet Commission on the Value of Death report sums this up well: ‘We conclude with our core contention: death and dying must be recognised as not only normal, but valuable. Care of the dying and grieving must be rebalanced, and we call on people throughout society to respond to this challenge.’