When it comes to quality of death, the UK compares favourably with other parts of the world.
It came top of 40 countries in a ‘quality of death’ index that looks at the provision of palliative care and how it is implemented nationally.
So it is concerning that one in four people in the UK today are not able to access the palliative and end-of-life services and support they need.
At Hospice UK, we’ve found that many of those missing out on basic standards of care are often people who’ve already experienced unfairness and discrimination throughout their lives, especially people from racialised and LGBT communities, and those experiencing socio-economic inequalities.
A deep-rooted stigma associated with reaching out for help, language barriers and a limited understanding of support that is available are some of the main barriers to care for some parts of racialised communities.
For the LGBT community, despite a legal duty under the Equality Act 2010 for healthcare services to treat LGBT patients fairly and without discrimination, discriminatory treatment is still evident, with those in the community experiencing disproportionally worse health outcomes and healthcare.
And for those experiencing homelessness, who often fall victim to discrimination, disrespect and disempowerment, their want to engage can be particularly low, altering their ability to access services.
It’s certainly encouraging that inequality in accessing end of life care has been acknowledged by the Department of Health and Social Care in England since 2004, followed by the 2008 End-of-Life Care Strategy, which aimed to help all people ‘irrespective of age, gender, ethnicity, religious belief, disability, sexual orientation, diagnosis or socioeconomic status’ to access the right care.
Most recently, the sector has come together to launch the Ambitions Framework, to address the future of palliative and end of life care in the UK.
Yet much more needs to be done to make the change we want to see, to ensure everyone can access the right care at the end of life.
Hospice UK has found that persistent inequalities in hospice care provision remain, being particularly prevalent for people without cancer, older people, racialised communities and those living in rural or deprived areas.
In addition, while there is substantial evidence now existing on inequalities linked to general health in the late stages of life, huge gaps remain in its evidence base, including appropriate end of life care for the LGBT community and people experiencing homelessness.
People also continue to face multiple barriers in accessing health and social care services due to fear, stigmatisation, discrimination, past experiences of being turned away, and punitive social policies.
The organisation’s new report, Equality in Hospice and End of Life Care is a springboard to working with the palliative and end of life sector to tackle inequality, focusing on a number of thematic areas, including racialised communities, people experiencing homelessness, imprisoned people and LGBT communities.
Initial findings have already revealed that the sector’s work must be grounded more in the experience and wishes of the people we support, and must take an intersectional approach, by considering how people are discriminated against and disadvantaged on a multitude of characteristics (including race, gender and socioeconomic status).
This will give greater opportunity for approaches that recognise the needs of an increasingly diverse population and will be central to reducing inequalities in palliative and end-of-life care.
The fact that people are missing out on vital care is unacceptable. We – the palliative and end-of-life care services, commissioners and partners – must do more and do so quickly.
Everyone has the right to high quality care and support at the end of life. The hospice sector rightly prides itself on leading the way in providing high quality and innovative care. And while high quality does not equate to universal reach, like Hospice UK, many hospices are putting addressing inequalities at the heart of their strategies.
As we move forward with this work, we have to engage with the whole palliative and end of life sector, to ensure that everyone – no matter who they are, where they are or why they are ill – receives the best possible care at the end of life.