Compassion in Healthcare: Practical Policy for Civic Life

Lead Research Organisation: University of Oxford
Department Name: Theology and Religion Faculty

Abstract

Compassion in healthcare has rightly been of major concern in recent years. The Francis Report into the mid-Staffordshire NHS Foundation Trust highlighted this matter clearly. However, the nature of compassion has typically not been sufficiently thought about or worked out in practical detail in institutional, professional and public settings. Rather compassion's meaning and practice have been thought obvious and not a matter for sustained reflection.

Historically, compassion has often been conceived in religious terms. Where serious scholarly reflection has been conducted on compassion, it has commonly been shaped by theological, philosophical or other religious commitments. Prominent contributions, differing significantly in their analyses, have come from streams of Christian and Buddhist thought.

More recently, a belief in the storied or narratival nature of human self-understanding has informed much medical humanities thinking about compassion. Parallel policy turns have included an emphasis on 'patient-centred care' (seeing patients as persons with stories and wishes) and the overall 'life-course' of patients (seeing patients in the here and now in terms of their needs for care over the course of their lives). Moreover, while underlying Christian ideas of solidarity and co-suffering have to some extent endured, versions of Buddhism have become more influential for how compassion is conceived in healthcare, accompanied practically, for example, by 'mindfulness' training. Finally, in academic reflection on healthcare, philosophy of emotion has emphasised the cognitive nature of compassion and thus its crucial role in institutional life and professional training.

This analysis highlights the diversity of meanings attributed to compassion and so complicates public discourse about health and suffering, providing it with points of reference whereby suffering's individual, social and political significance can be explored. It remains important in a plural, democratic society that debate is constantly stimulated about the interpretation of compassion and the pathways to its social and political realisation. If it is to be conceptually rich and practically useful, this debate should be interdisciplinary, research-intensive and attentive to the experience of both healthcare workers and patients.

The research to be conducted in this project will significantly advance this debate, drawing Christian traditions into constructive 'secular' conversation with Buddhist and philosophical interpretations of compassion. By 'secular' here, the research will not mean non-religious but rather what the Augustinian Christian tradition has intended, namely a humble, shared, critically respectful civic life which does not exclude either religious or non-religious voices but seeks common ground, better quality disagreement and advanced understanding through rigorous conversation.

This project will focus on four themes to organise this secular conversation and construct its own account of compassion: time, responsibility, personalisation and privatisation. Through analysis of these themes, it will seek greater clarity on the variety of ways in which compassion is conceived while at the same time constructing and advocating a specific account of compassion, shaped primarily by Christian moral theology, as a contribution towards the formation of healthcare policy concerning institutional organisation, professionalism and the role of citizenship in healthcare.

The project's goals will be achieved through reflective research, informed by knowledge exchange with relevant project partners especially the Oxford University Hospitals NHS Foundation Trust. Collaborative, knowledge exchange seminars in partnership with healthcare workers will be focussed around how the four themes noted above provide conceptual pathways towards a better understanding of compassion and its realisation in practice.

Planned Impact

This research into compassion in healthcare aims to be well informed by healthcare practice and to effect beneficial change within it. It has the potential to contribute significantly to healthcare's culture and effectiveness by deepening understanding of compassion's nature and practical outworking among healthcare workers, policy makers, the general public and the commercial private sector.

The first group of non-academic beneficiaries are healthcare workers such as doctors, nurses and managers, national policy makers, regional healthcare commissioners and local authorities. Impact will be sought by pursuing the practical outworking in policy of the PI's research regarding compassion in relation to time, responsibility, personalisation and privatisation. The pilot phase of the project has indicated how well-informed, collaborative conceptual analysis can open up pathways to practical change in specific areas: for example, theological discussion of responsible leadership can help departments in hospitals put into systematic practice commitments concerning compassion for one's colleagues by focussing more attention on training for those moving into senior clinical positions; or again, theological analysis of interpersonal solidarity can shape professional bodies' public statements concerning the healthcare profession's compassionate social contract with patients in addressing the challenges of shared responsibility for healthcare and the promise of personalised medicine.

Impact in these specific areas and others will be sought through structured interventions within healthcare institutions via partnerships already forged by the PI at local, national, regional and international levels and any which may form during the project. The project partners are the Oxford University Hospitals NHS Foundation Trust, the Royal College of Physician and the Stratification in Colorectal Cancer Consortium. Collaborators include the European Alliance for Personalised Medicine. The impacts aimed at include improvements to institutional organisation, teamwork, care for colleagues, professionalism, training, patient-centred care and policy in personalised medicine. These cultural benefits to healthcare institutions may, over time, lead to enduring change.

Non-academic beneficiaries will, secondly, be the general public, especially those who happen to be patients. A deep understanding of diverse interpretations of compassion will be crucial to the effectiveness of healthcare in plural democracies. Patients will benefit through institutional change and staff training which enable such enhanced understanding. The significance of how people feel about the healthcare they receive lies in an enriched healthcare culture and in clinical outcomes with studies indicating that, when people feel cared for, they are more like to adhere to agreed treatment plans, which are especially important in relation to personalised medicine. A further indirect benefit may thus be improved patient health and thus the wealth of the United Kingdom.

The third group of non-academic beneficiaries are the commercial private sector and policy makers working therein. These might include clinicians operating privately or private medical institutions which seek to understand how their work may be both compassionate and financially profitable. In particular, the research focus on personalised medicine will benefit pharmaceutical companies who wish to reflect on the need for societal trust for patient participation in screening and treatment pathways and thus for the successful and ethical deployment of commercial products. Government-funded entities such as the Precision Medicine catapults which seek to promote the commercialisation of personalised medicine research may benefit from this work. Since the UK government is partnering with such bodies and has appointed a Minister for Life Sciences to support them, government and policy makers may benefit from the research.

Publications

10 25 50
 
Description There have been four major achievements by the researchers and the partners with whom they have collaborated.

(i) a major public report (Advancing Medical Professionalism, Royal College of Physicians, 2018) which is now influencing doctors' ongoing training in e.g. OUH NHS Foundation Trust.

(ii) a series of departmental reports for OUH NHS Foundation Trust which have been adopted by the departments as the basis of compassionate service development and policy work, e.g around compassion and complaints.

(iii) a new research group focussing on the communication and ethos of precision medicine, in partnerships with three patient organisations aiming at reviewing the culture and practice of precision medicine

(iv) a series of academic and non-academic publications for a variety of audiences ranging from researchers to healthcare professionals to patients

This project has advanced knowledge in a variety of areas including

1. the scale of the ethical difficulties in the implementation of precision medicine

2. the significance of compassion for the implementation of the duty of candour in healthcare

3. the prospects for medical professionalism today, especially in relation to machine learning

In publications produced, the project has achieved:

A. new analyses of classical and Christian traditions of thought in relation to the theme of responsibility for health,

B. new appraisals of the role of marketisation in healthcare and the need for a healthcare covenant between healthcare professionals and the public whom they serve and with whom they work.

C. new assessments of the significance of the moral ethos of healthcare for the long-term prospects of medical professionalism

D. new criticisms of the culture of precision medicine, in respect of clinical communication, data sharing, the representation of the human person and economic value.
Internally within the University of Oxford, we have developed

I. A new 'Humanities and Healthcare' programme, staffed by two new colleagues, which aims to develop publicly beneficial research and policy partnerships between humanities researchers, medical science researchers and healthcare organisations/professionals.

II. Several new research partnerships focussed on themes such as machine learning, medical humanities androgogy and planetary health.
Exploitation Route The research might be taken up by the following people/organisations

First, by those woking in healthcare organisations who wish to explore what compassion means practically for the development of their organisational ethos or culture.

Second, by those in healthcare education responsible for developing medical professionalism especially in terms of professional identity, vocation, teamwork, patient-partnership, advocacy, teaching and learning and in relation to innovation.

Third, by those in government, the pharmaceutical industry and clinical practice who wish to think critically and practically about the promissory culture in which precision medicine is currently being promoted, including by the UK government.
Sectors Education,Healthcare,Government, Democracy and Justice,Pharmaceuticals and Medical Biotechnology

URL http://www.healthcarevalues.ox.ac.uk
 
Description The overall impact of the work funded by this award has been to support clinicians, researchers and other members of staff in their understanding and practice of compassion so that they and the patients they serve can be better cared for. This has taken many different forms as detailed elsewhere - from the specific practice changes in Oxford University Hospitals NHS Foundation Trust to critiquing the rhetoric and policy direction around precision medicine. The unifying thread which people have drawn on is a challenge to a simplistic notion of compassion which ends up being severed from important traditions of thought which relate it to e.g. responsibility and so becomes reduced to mere acquiescence to others' view of their suffering and/or surrender to the imperatives of technological advance. Where this bites in terms of impact is in the projects and policies of the partners with whom we work, whether patient organisations, hospitals or clinical trials units - who are starting to adopt some of our thinking and work out its implications in practice. These implications include: what patients need as a road-map to guide them through complexity/competing agendas in precision medicine; how to deepen inter professional understanding and diminish resentment in busy hospital departments; how to encourage appropriate responsibility-taking by patients in the progress of their care; how to adjust clinical trials to ensure that patients who did not receive the novel treatment are nonetheless explicitly treated as important as those who do; how to care effectively for trials staff in the unenviable position of having to work 'so that the trial does not fail'. The challenges we are struggling to overcome are normally the agendas competing for time which shape healthcare. The way through this is to meet the further challenge, namely to find the concrete ways in which compassion for patients and colleagues can be better supported over the long-term rather than depending on happenstance and individual personality, important though those factors can be. Responding to this requires us to meet the further challenge of ensuring that good, critical thinking about compassion has been nurtured which can act as the motor to keep change going. But in partnership we are making progress on all these fronts and colleagues in healthcare keep coming back and wanting more. We have learnt a huge amount in the process which is in turn informing our research and publications as can be seen from the list supplied. Now that this AHRC-funded project has come to its conclusion, the findings are being used in a Royal College of Physicians publications for training doctors in medical professionalism, in research and policy on precision medicine and in developing understanding of the nature and practice of compassion in healthcare teams.
First Year Of Impact 2017
Sector Education,Healthcare,Pharmaceuticals and Medical Biotechnology
Impact Types Policy & public services

 
Description Clinical trials thinking about unstratified patients
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.healthcarevalues.ox.ac.uk/molecularly-unstratified-patient-research
 
Description RCP medical professionalism report
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact For indication of reception of the report and changed attitudes and plans for improved education, see videos on www.healthcarevalues.ox.ac.uk. Practice change will include the incorporation of the report into both doctor and medical student training.
URL https://www.rcplondon.ac.uk/projects/outputs/advancing-medical-professionalism
 
Description Reports influencing OUH compassionate practice
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
Impact The changes are focussed on staff behaviour and practice in departments of the Oxford University Hospitals NHS Foundation Trust. The workshops which developed the practice change involved about 12 staff on each occasion. The influence of the policy changes goes wider with the departments of significantly larger size c.20-100 staff. The benefits are found in the practice changes which have been adopted to support compassionate care of both staff and patients. In 2018-2019, we are evaluating the ongoing impact of these practice-changes and identifying where further focus is required to achieve their their purpose.
URL http://www.healthcarevalues.ox.ac.uk/compassion-workshops
 
Description Royal College of Physicians Committee for Ethical Issues in Medicine
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL https://www.rcplondon.ac.uk/projects/outputs/dedicated-doctor-executive-summary
 
Description University of Oxford Higher Education Innovation Funding (policy engagement)
Amount £67,366 (GBP)
Organisation Higher Education Innovation Funding (HEIF) 
Sector Public
Country United Kingdom
Start 09/2018 
End 08/2020
 
Description University of Oxford Humanities Division Knowledge Exchange follow-on Awards
Amount £2,000 (GBP)
Organisation University of Oxford 
Sector Academic/University
Country United Kingdom
Start 01/2018 
End 06/2018
 
Description Wellcome Trust Institutional Strategic Support Fund
Amount £62,367 (GBP)
Organisation University of Oxford 
Sector Academic/University
Country United Kingdom
Start 02/2019 
End 01/2021
 
Description EAPM 
Organisation European Alliance for Personalised Medicine
Country Belgium 
Sector Charity/Non Profit 
PI Contribution We have cooperated with EAPM in the design of a session of a major congress held in Belfast in order to raise the profile of the research and policy questions which our project is designed to address. We have designed the session, brought together the participants and shaped the intellectual agenda and presentation. We have also ensured that there is an underlying publication and follow-on research activities so that momentum is not lost. In 2018 we returned to EAPM Congress, this time in Milan, to offer a further seminar on the project under the title 'The Promise of Precision'.
Collaborator Contribution The EAPM organised the 2017 Congress, provided teleconference support to support the coherence of the session and paid/subsidised the conference fees of myself and my researcher. They also provided profile for our research at an international level both through our presence in the Congress programme and through picking out elements of our research in the final Congress report. This was repeated in 2018.
Impact This collaboration is multidisciplinary: oncology, behavioural medicine, theology, law, social science, health economics. Publication - https://doi.org/10.1159/000480422.
Start Year 2017
 
Description OUH NHS Foundation Trust 
Organisation Oxford University Hospitals NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution We have facilitated a series of workshops on the theme of compassion across various department of this NHS Trust. These workshops drew on classic philosophical theological and religious sources to focus questions about the meaning and practice of compassion. This has led to reports incorporating practice changes being produced and we are now in the process of supporting the departments in carrying these practice changes into effect. The engagement has led to a number of other invitations from different parts of the Trust to present on the theme of compassion. I am also now contributing to a number of streams of work within Haematology, for example, on themes from shared decision-making to the lived experience of precision medicine. I have also been involved in setting up a Clinical Ethics Advisory Group for the Trust, building on some of this work. By March 2019, having produced final reports for all 4 departments, we are continuing to follow up implementation of the reports' practice changes with a particular focus on the handling of complaints in a compassionate way. In addition, we are now pursuing new rounds of compassion workshops with other departments of the Trust.
Collaborator Contribution The partner has provided meeting rooms and made staff available not only for the workshops but also prior to and subsequent to them in order to ensure effective preparation and follow up. Staff have given freely of their time, energy, expertise and experience in shaping the work we have done together. In implementing practice changes, individual staff have taken responsibility for putting them into effect. The partner has continued to provide such support in 2018-2019.
Impact Multidisciplinary: theology, medicine (haematology, vascular surgery, obstetrics and gynaecology). Reports influencing OUH compassionate practice. Outputs - 3 reports on compassion workshops.
Start Year 2017
 
Description RCP 
Organisation Royal College of Physicians of London
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided organisational, intellectual and writing support in the production of a new report on medical professionalism by the Royal College of Physicians. This has involved coordinating 3 workshops, putting together briefing materials before and after, and then writing a series of chapters for the report. We have now completed the report which was published in December 2018 - this involved extensive writing, rewriting and editing of the report. We have also been closely involved in its dissemination and have formed a close partnership with one NHS Trust in order to examine the pathways to implementing the report's recommendations and incorporating it into ongoing training for doctors. In addition, we are now
Collaborator Contribution The RCP has provided administrative support for the workshops, some refreshments, professional expertise, convening power, recommendations for participants and meeting space. Since this a project of the RCP President, there is significant staff time committed to it. The RCP bore the burden of the final production of the report alongside partnering in the writing/editing process.
Impact Multi-disciplinary: theology, clinical medicine. RCP medical professionalism report - in progress. Tweedie, J. Hordern J Dacre J Advancing Medical Professionalism (Royal College of Physicians, 2018) - full report and summary
Start Year 2017
 
Description All Party Parliamentary Group on Religious Literacy 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact 50 policy-makers, Members of Parliament and others attended a meeting of the All Party Parliamentary Group on Religious Education with a focus on religious literacy. Joshua Hordern spoke on the theme of religious literacy in health and social care with a particular focus on the meaning and practice of compassion. He contributed to the APPG consultation on this matter and is now a regular invitee to contribute to the deliberations of the group.
Year(s) Of Engagement Activity 2017
URL http://www.healthcarevalues.ox.ac.uk/religious-literacy
 
Description Precision medicine patient organisations 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact This engagement activity stretched over a series of workshops and a public event (at the European Alliance for Personalised Medicine Congress in Belfast) in 2017 and 2018. It is a key dimension of our collaboration with the European Alliance for Personalised Medicine and the Stratification in Colorectal Cancer Consortium. The focus was on both professional practitioners (doctors, medical scientists) and patient organisations. We have presented our research to such patient organisations (Bowel Cancer UK and Genetic Alliance UK) and developed it significantly in light of the conversations we have had with them. This has led to a desire for close future partnership and to additional organisations joining in the research (e.g. Cystic Fibrosis Trust).
Year(s) Of Engagement Activity 2017,2018,2019
URL http://www.healthcarevalues.ox.ac.uk/promise-precision-0
 
Description Talking about Dying 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact This event, hosted by BBC Newsnight's Evan Davis, was a collaboration between the Oxford Healthcare Values Partnership and the Collaborating Centre for Values-based Health and Social Care. c.250 people attended the colloquium which considered issues in how we as a society talk about dying. Leading contributors to the debate were collaborators from OUH NHS Foundation trust with whom the project has been working on compassionate practice; the work of the project was referenced in the discussion. Evan Davis picked up key points from the debate especially about the compassionate use of so-called 'do not resuscitate' orders and may draw on this conversation in a future edition of Newsnight. The event was also reported on in the Church of England newspaper. Although neither Joshua Hordern nor Therese Feiler were directly involved in the panel discussion, our project had an influence on the shape and content of the discussion. There are plans for further such events in the future around Oxfordshire in order to improve the quality of our community's talking about dying.
Year(s) Of Engagement Activity 2017
URL http://www.healthcarevalues.ox.ac.uk/talking-about-dying