Equity, Diversity and Inclusion in Palliative and End of Life Care
Inequity in palliative and end of life care is one of the sectors key issues, a roadblock that has not been easy to address. Palliative care emerged in the 1960s in response to the increasing number of people dying with cancer and the quality of care that was available. However, despite many years of development the majority of patients who get access to palliative care are white people with cancer. There are numerous research studies that describe the challenges of access faced by people from ethnically diverse communities, people who identify at LGBTQ+, people who are homeless and those who have other diseases that would benefit from palliative care.
There are many reasons for this including funding and capacity. There are though other reasons relating to a lack of community engagement, institutional parameters around system design and a focus on ‘services’ and not the strengths of community.
The programme includes:-
1. Introduction including the historical context, data and evidence of the challenge of access to palliative care
2. Power and privilege and how this impacts care design
3. Forms of discrimination and intersectionality
4. Racism and Anti-Racism in palliative care
5. Community Engagement and co-production skills – shifting power to communities
6. Institutional challenge and change
7. A community of practice to stay connected and continue learning
Anyone who works in Palliative and End of Life Care in the UK knows that there are ongoing challenges with regards to equity of access. This is not just for people from ethnically diverse communities but also people with a diagnosis other than cancer. In addition, groups that do get access are reporting not feeling that they or their families are accepted e.g. people who identify as LGBTQIA+
“the benefits of palliative care are not experienced equitably. Many racialized people have suffered discrimination at the hands of the health system and are affected by intergenerational racial trauma. Racialized individuals have less utilization of palliative care services, experience worse symptom control, and are less likely to have their end of life wishes documented or respected” (Silva MD et al, 2016)
Well, this doctor, a female doctor, stood outside the door saying, ‘I need a chaperone’. I’m lying there, really ill and thinking: what? Why does she need a chaperone? And she must have called out about a dozen times, … then eventually one of the nurses came up to her and said, ‘What do you need a chaperone for?’ She answered, ‘Because she’s a lesbian!’ I can’t tell you how furious I was, but I was just simply too ill to deal with it.” (Hiding Who I am, Marie Curie 2017)
A public health approach to palliative and end of life care is population based – with no one left behind. However, it is also an approach that celebrates diversity, the talents, insights, cultural riches and different approaches to care giving, death, dying and loss.
We have gathered together a team of people to help us construct and co-deliver a three part programme:
Part 1 – an introductory webinar on the importance of tacking inequity in our field;
Part 2 – a 6 Module Foundation Certificate ;
Part 3 – an extension to a Practice Certificate in either care or organisational strategy. Project ECHO (an international model of connecting people and learning) is being used as part of the programme to create communities of practice.
The aim of this programme is to dig into some of the more uncomfortable areas of equity including power and privilege, intersectionality, racism and anti-racism, how to lead change in your organisation, how to be an ally and why the Equalities Act doesn’t go far enough. As part of the programme and particularly leading into part three, the aim is to provoke thinking and also support practical action.
The team is made up of:-
- Balwinder Kaur, Interim Director of Adult Social Care, Surrey County Council
- Dr Gurpreet Gupta, Palliative Medicine Consultant, St Luke’s Hospice, North West London and chair of the race equity committee, Association for Palliative Medicine
- Stewart O’Callaghan, Founding CEO of Live Through This, the UK’s only LGBTIQ+ cancer charity
- Dr Jamilla Hussain, Palliative Medicine Consultant and Senior Research Fellow, Bradford Hospitals Foundation Trust
- Dr Sabrina Bajwah, Clinical Senior Lecturer, King’s College London and Honorary Consultant Palliative Care King’s Health Partners
- Dr Max Watson, Project Echo Director, Hospice UK
- Dr Manjula Patel, Trustee of Compassionate Communities UK and CEO of Murray Hall Community Trust
- Dr Julian Abel, co-founder of Compassionate Communities UK and retired Palliative Medicine Consultant
- Dr Emma Hodges, Development Director of Compassionate Communities UK
The six modules, plus one study session, and two ECHO sessions build on from the Introduction to Equity, Diversity and Inclusion for Palliative and End of Life Care which is a pre-requisite for this course.
The overarching learning goal for the course is to facilitate a programme of learning that supports a reduction in systemic prejudice and improved patient, family and community outcomes in the field of end of life care.
Each module has a set of three learning objectives which will be evaluated throughout the course via session interaction, short module reflective questions and a final assessment via an assignment.
Part 1 – The introductory course is £35.
Part 2 – The full 9 week module course, starting in September, is £500.
Part 3 – is £225 and has two pathways; one for clinical practice and the other for organisational strategy and management. This programme is based on reflective practice, application of learning and participating in regular communities of practice. An introductory session for Part 3 will take place in the autumn to coincide with the end of Part 2.
** The introductory course is FREE when you book a place on the full course ** please contact us for the discount code: firstname.lastname@example.org – Members receive 20% discount