Best Interests and Healthcare Ethics
Here we focus on ‘best interests’ decisions in healthcare settings and the ethical aspects of these decisions.
This workstream explores what has been published and involves speaking to a range of people about their experiences and impressions. We aim to bring together these different perspectives, with a view to recommending how, ethically, decisions should be made in the future.
Richard, Jon, Giles and Emanuele work on WS1, which is exploring the perspectives of health professionals, patients, and those close to them. We involved various members of the public, as well as people with lived experience of “best interests” decisions, in discussions about planning and designing the BABEL project. In particular, members of the BABEL project team had meetings with people from the following groups:
- West of England Centre for Inclusive Living (WECIL). Richard and Suzanne (from WS2) met with a group in April 2019.
- People in Health West of England. Giles met with a group in May 2021.
- Bristol Young People’s Advisory Group. Giles and Jon met with a group in May 2021.
- ReMemBer Dementia PPI Group. Giles, Richard and Emanuele met with a group in May 2021.
We’re very grateful to everyone who met with us to discuss the project and who contributed to the design of the project.
Aims and Objectives
BABEL has three phases: mapping, framing and shaping.
Mapping
First, we will look at the published literature on the topic. The aim is to map the concept of ‘best interests’ as it appears in bioethical and healthcare literature. We will explore the different ways in which 'best interests’ is understood in the field of bioethics, in guidance for healthcare professionals, and in previous research in this area. This will help us to see how the idea of ‘best interests’ is understood and practiced, and the different arguments that are used in favour of, or against, the ‘best interests’ standard. We call this phase 'mapping'.
Framing
The second phase involves research with people who have experience of ‘best interests’ decision-making in healthcare, either as decision makers or as the subject of decisions. The aim is to gather people's experiences in understanding, interpreting, applying and being subject to the ‘best interests’ standard in healthcare contexts. We will undertake research with a range of people, including healthcare professionals, as well as those directly affected by such decisions, such as patients and their families. This will give us a more detailed picture of how the process works in practice, who is involved, what is considered, and any changes that might be needed or learning that can be shared. This will help us to judge the strengths and weaknesses of ‘best interests’ decision-making in practice and to see whether the theory and the practice match up. We call this phase 'framing'.
Shaping
The final phase involves making recommendations about future healthcare practice. The aim is to inform future decisions, by bringing together all our findings and then drawing conclusions about how, ethically, we should think about how decisions should be made when people can't make decisions for themselves. We call this phase 'shaping'.
We are working closely with Workstream 2 (Best Interests and Health Care Law) during each of these phases in order to ensure that a complete legal and ethical account of the best interests standard is achieved.
Methods
We are using different methods in each of the three phases (‘mapping’, ‘framing’ and ‘shaping’). Each of these phases is informed and shaped by the methodologies developed by Workstream 3 which takes an empirical bioethics approach.
1. Mapping
In this phase, we will be searching the literature. For example, we will look at the guidance available for healthcare professionals, what previous studies have found out about practice in this area, and what researchers working in bioethics understand by, and think about, the idea of ‘best interests’.
2. Framing
In this phase, we will undertake empirical research, in particular qualitative research, which seeks to understand people's experiences of, and attitudes to, ‘best interests’ in healthcare practice. We aim to interview key people and run some focus groups, which bring people together to share their views.
3. Shaping
In this phase, we will bring together what we have found from the literature and from our interviews. Using ‘empirical bioethics’ approaches, we aim to strike a balance between the different findings and to suggest ways forward.
One estimate has it that there are 2 million adults who lack capacity in England and Wales. It has also been estimated that they are being cared for and supported by around 6 million people, who include their loved ones, as well as a range of professionals. In this workstream, we aim to find out about people’s experiences of receiving or providing such care and support in healthcare settings. Our hope is that we can help to identify and share best practice in this area.