Palliative care research, why it has to change – Dr Julian Abel

In my previous editorial I talked about the palliative care blind spots. I made the point that current models of palliative care fall way short of what is needed.

As a reminder, the four blind spots were

1. Lack of focus on living well, not just for the person with the illness but also for everyone who experiences death, dying, loss and caregiving. Living well recognises the fundamental importance of relationships to both people and place, to social ecology. This is not just a nice to have add on, it lies at the heart of meaning in palliative care.
2. Lack of equity of access to palliative care
3. Over professionalisation of bereavement, ignoring support from family, friends, community members and others who have been bereaved
4. Very limited research perspective, dominated by a medical model of cause and effect.

If I think about why I wanted to work in palliative care in the first place, my motivation was, and has remained, to make the most for people facing terminal illnesses, whether as friend, family member, community member, work colleague.

We all face death.

We all care for people who are dying multiple times in our lives and we all experience grief and loss. How this happens has enormous impact which affects people immediately, in the short term, the longer term, for the rest of our lives and into the generations that follow.

Lying at the heart of good experiences amongst the sadness is compassion and kindness. How we treat each other during life’s testing moments related to dying, is not just a marker of how the quality of our culture, how we live is how we die.

The kindness we show each other in relation to experiences of dying merge into how we are in the rest of our lives, and how we are in the rest of our lives merges into how we treat each other when dying. And, as stated above, this is about all of us.

Models of palliative care that are not population based, which are not for everyone, are insufficient. Furthermore, if a purely professional approach is taken to palliative care, we ignore the primary importance, which works at a deep biological level, of being held in the hearts and minds of the people we love, and holding them in our own hearts and minds.

Taking this somewhat extensive view of palliative care, where does research sit in trying to work out whether what palliative care services do is actually helpful, and where are the gaps? To understand the role of research, we need to point towards existing limitations of current research practice, in the same way we looked at palliative care blind spots.

1. Research focus is mainly about cause and result, trying to prove causation. Whilst this is understandable, drawing on a long history of scientific research, it is extremely limiting in dealing with complex relationships over short, medium and long term time periods that may pass through generations.
2. Human experience of death, dying, loss and care giving is not simply a scientific, biomedical one. It is social and cultural, which has positive experiences as well as those related to suffering. It is therefore necessary for research to be able to capture all of these experiences, not just those which fit into a neat scientific category or methodology.
3. The process of research is heavily restrictive, bureaucratic and hierarchical. This goes from developing a hypothesis, using a simple cause and result model, to getting ethical approval stuck in the narrow research paradigm, to getting funding, to producing results acceptable to journal editors and peer reviewers.
4. All of the above contribute to making research unwieldy and unsuited to try and capture the complex relationships that are a fundamental part of death, care and loss.

So what can be done about what looks to be woeful shortfall in the suitability of research in being able to answer the questions we would like to ask?

The answer is a lot but this requires thinking differently. We can draw on the many traditions of research found outside of medicine, in the fields of social sciences, anthropology and others. But we mainly need a new research epistemology. Epistemology is defined as the philosophical study of the nature, origin, and limits of human knowledge.

One of the key components of looking at the value of engaging end of life for everyone by everyone, is to look for emergence rather than searching for results that are important to researchers and publishers.

Emergence means that the outcomes from actions are not necessarily predictable and they may be found in a wide variety of places which we often ignore. We are complex social animals. Our social nature affects everything we do and everything we perceive.

What this means is that when social change takes place, when death, dying, loss and care giving involves everyone, then the impact of this spills out in many different areas of life.

A useful way of assessing this is to look at the 17 United Nations Sustainable Development Goals, as shown in the diagram below.

 

All of the 17 goals influence each other.

We are interdependent beings, in the way we live and the way we connect with each other.

If an intervention is going to be useful, we should be able to see benefits in a wide variety of areas. The lack of acknowledgement of interdependence is critical in the modern world.

Making medicines that cause toxic damage to the environment when they are disposed is a good example. Toxic damage tends to be more prevalent in more deprived communities. This makes inequality worse, increases structural vulnerability and damages whole populations in the long term.

Taking the perspective of looking for emergent impacts means paying attention to the broader interconnections of any intervention. It requires us to seek out positive and negative impacts in unexpected areas.

The social morbidities associated with grief and loss can be severe and include depression, drug and alcohol addiction, sexual acting out, school refusal, lost work days and many others. Many of these have mortalities associated with them.

Positive changes through creating and improving a sense of belonging, through developing community, can reduce the harm in many of these areas.

These principles are highly relevant to palliative care research.

The social and cultural experiences of death and dying have a major impact on biology and on meaning and value.

Research methodologies have to be able to capture all of these. This is going to require new epistemologies and research methods. And the changes that this will bring need to be reciprocated in grant making bodies, research ethics committees, in research design, in peer review and in publication decisions of academic journals.