As part of the Scottish Parliament’s academic engagement work, SPICe welcomes academics to apply to carry out a fellowship in a particular policy area, as well as inviting academics to write ‘guest blogs’. This blog has been written by Dr Jennifer Corns, Senior Lecturer in Philosophy and Professor Ben Colburn, Professor of Political Philosophy, both working at the University of Glasgow. What follows are the views of the authors and not those of SPICe or of the Scottish Parliament.
Dr. Corns and Professor Colburn devised the framework covered here, which has already been put to use with some stakeholders to support decision-making around what is important to people in how treatment and support is provided . The authors argue that the framework has potential to underpin policy-making using this novel approach, across a number of different policy domains.
Introduction
Alleviating suffering is a central priority in health and social care. We don’t often talk about suffering in general and are often concerned with particular kinds of suffering—like pain or illness. Our research develops a practical framework which offers a distinctive approach to alleviating any kind of suffering.
This new approach offers novel ways of addressing difficult policy questions in health and social care.
In this blog post, we summarise the framework and its underpinning research, how it has already been used in practice, and how it may be further used to inform policy.
We define suffering as the significant disruption of agency. We suffer when who we are, as agents, is significantly disrupted.
To understand and appreciate this definition of suffering and the practical framework it supports, we need to explain what agency is and when an agent is autonomous.
What is agency?
First, we’ll explain what we mean by agency. Here, we are understanding agency very broadly: agents are beings that do things. This includes humans, but other animals, too.
Humans are complex agents, with many forms of agency. These include:
- Biological agency: we breathe, eat and sleep;
- Psychological agency: we think, feel, desire and plan;
- Social agency: we talk, work, play, and form relationships.
Agency always involves doing something, somewhere, for some purpose. Some of the things that agents do are based on decisions, but some are not. More technically: each form of agency involves three aspects: the exercise of (1) abilities in an (2) environment in accordance with (3) norms, i.e. the values and standards of success in a domain of activity.
Consider our biological activity of breathing. Acting as biological agent in this way requires (1) the ability to move air in and out of the respiratory system; (2) an environment containing air of sufficient quality; such that (3) we can successfully absorb oxygen and expel carbon dioxide.
Whenever we can identify a range of activities involving these three aspects, we have identified a form of agency. Besides the three core forms, individuals have many particular forms of agency, e.g. being parents, teachers, or citizens.
How do we understand suffering in relation to agency?
We define suffering as the significant disruption to agency. We suffer when who we are, as agents, is significantly disrupted.
Any of our forms of agency can be significantly disrupted in any of its three key aspects.
For example:
- Losing the ability to eat disrupts biological agency.
- An environment so noisy that we can’t think disrupts psychological agency.
- Changes in norms, i.e. values and standards of success, for being good citizens, parents or friends can make it impossible to succeed in those roles and thereby disrupt social agency.
Forms of Agency and its Three Key Aspects | Biological Agency | Psychological Agency | Social Agency |
Abilities | Example: Eating | Example: Thinking | Example: Conversing |
Environment | Example: Availability of Food | Example: Noise levels | Example: Other people |
Norms | Example: Nutritional Requirements | Example: Logic and rationality | Example: Respect |
With this approach, suffering is distinct from pain or any unpleasant experience. This might be surprising, but not all pain is significant enough to disrupt our agency, and not all forms of suffering involve pain. Suffering from poverty, isolation, or a lack of education can all involve unpleasant experiences, but they significantly disrupt agency even when they don’t involve unpleasant experiences – they can all significantly disrupt an agent’s ability to do things successfully in their environment.
To design interventions targeted at alleviating suffering, we should (1) distinguish suffering from these other things by identifying (2) which forms of agency are disrupted through (3) which of its three aspects.
The diagram below brings together what we’ve covered so far and asks questions which prompt us to identify whether there is any suffering to be targeted, in what form of agency, and in which aspect of that form.
Each disruption identified is a potential target for intervention to alleviate suffering. Identifying the disruptions provides a starting point for a policy response.
What is autonomy?
The understanding of suffering and agency above can also support the guiding principle in health and social care of respect for individual autonomy.
An agent is autonomous when they decide for themselves what is valuable and live their lives in accordance with that decision. Individuals have different forms of agency and value their forms of agency differently.
As complex agents, we must often prioritise one form of agency over another. We often become less successful and diminish one form of agency in order to become more successful and enrich another. We introduce the technical term ‘agentive trade-offs’ to capture this important phenomenon.
Difficult agentive trade-offs are endemic in domains targeted by care policies. Interventions to alleviate suffering which involves disruption to one form of agency, will often involve significant disruptions to other forms.
For example, someone with a painful terminal illness faces a trade-off between their biological agency and their psychological and social agency. Strong opioids may alleviate the pain of a terminal cancer patient, letting them rest and thereby enriching their biological agency, but further disrupt and diminish their social agency by preventing interaction with their loved ones. Of course, pain itself can be a kind of suffering which disrupts all forms of agency already. The point here is that alleviating the pain may require even further disruption to one’s social agency. This is a trade-off that some, but not all, patients will want to make.
Using autonomy as a guiding principle means respecting an individual’s own values and preferred trade-offs when considering how to alleviate suffering.
The box below brings together what we’ve covered so far and asks questions which prompt us to identify how we can alleviate suffering in a way which respects autonomy.
| To respect autonomy when alleviating suffering, we ask: Which forms of the individual’s agency will be enriched or disrupted through this intervention? Will the agent be more successful in some domains of activity? Will they be less successful in others? How are these forms related? What are the agentive trade-offs the individual faces? Which domains of activity will have to be diminished for others to be enriched? Which agentive trade-offs reflect the individual’s values? Which domains of activity matter most to the individual? Which interventions reflect the agent’s own priorities about which forms of agency should be diminished and which should be enriched? |
How has this framework been used in practice?
This agency-focused approach has already been used to improve palliative care.
The framework underpins a new e-learning module co-developed with Macmillan Cancer Support. A series of practical exercises and original resources supports practitioners in collaboratively working with individuals to more effectively alleviate their suffering by enriching agency.
Practitioners are supported through each step of applying the framework, enabling them to:
- Distinguish suffering from other problems, such as pain.
- Work collaboratively with patients to identify which aspects of their agency are being disrupted in which forms.
- Enact interventions which respect their autonomy in the agentive-trade offs they are facing.
The module was developed to support professionals working at the end of life in the context of oncology in particular, but we think it provides an effective template for resources to improve practice across any area of social and health care aiming to alleviate suffering.
How can this framework inform policy?
This agency-focused framework provides a high-level tool to support policy makers in their approach and thinking in relation to suffering.
It does not dictate which policies should be adopted. Rather, it provides a high-level tool for policy makers to:
- identify suffering;
- evaluate how interventions may alleviate or inadvertently compound it; and
- empower people to respond to suffering in ways which respect their autonomy.
Below are three policy areas, in different domains – palliative care, disability and human rights — showing how the framework might be used to inform policy through asking questions that acknowledge suffering as the significant disruption to agency.
Summary: a framework for policy
Focusing on agency can inform policies that alleviate suffering while upholding autonomy.
In summarising this contribution, adopting this framework allows policy-makers to do three key things in each relevant domain:
