Through the pandemic period, many people have faced talking more about death, dying and bereavement as these things have come to meet them. Many in our society remain uncomfortable talking about death, and only time will tell how the past year will affect this in the longer term. In the UK, as in much of the Western world, we have medicalised the process of dying into hospitals, too often hiding death from the community and leading to an institutionalised experience of death.
Alongside the huge challenges and trauma that the last year has brought, the pandemic has also acted as a catalyst for significant change and innovation, shining a light on unacceptable existing disparities in care. The crisis has also further amplified the need for us to strive harder for just,
equitable, person-centred and holistic support to be accessible to all as a right; care that reflects the unique life needs of each human being, rather than the needs of the system.
Proactively pursuing social inclusion is critical in improving access to end of life support to everyone. The right to a high-quality care and support at the end of life should not depend on your post code and access or accessibility to resources and knowledge nor should it be hampered by your race, religion or sexual orientation. Everyone’s life book is unique, and so should the last chapter be.
The inequities in end of life care are tragically all too often a window into other life inequalities such as housing. We know for example that the effects of institutional racism lead to inequalities that frequently crystallise at the end of life – and that, in consequence, too often people from ethnic minority groups and other marginalised groups such as the LGBTQ+ community miss out on or face barriers around palliative care.
Marie Curie’s report into Palliative and end of life care for Black, Asian and Minority Ethnic (BAME) groups in the UK found there was lower access to palliative care and a lack of referrals, awareness of relevant services or family or religious values conflicting with the idea of hospice care in BAME communities.
Another report – Hiding Who I Am: The Reality of End of Life Care for LGBT People – found that the LGBTQ+ community may access palliative care services late or not at all because they anticipate discrimination, have varied support networks or be significantly more likely to experience damaging mental health problems. Partners can also feel isolated or unsupported during bereavement because of their sexuality.
We need to further understand the experiences and needs of those from ethnic minority or other marginalised backgrounds in order to shape how we will care for our ageing population and advance our entire approach to death and dying as a society.
The process of death and grief are among the most difficult times of our lives. So we owe it to ourselves, and to everyone in our society, to try to at least make such a difficult time a peaceful and dignified one for all involved – from the person dying, to their loved ones and those healthworkers
who may be supporting them in their final months, weeks, days and hours.
We do this by being open, honest and having conversations with people about what they want and need to make their death a “good” death, and which will hopefully lead to less complex bereavement for those around them.
Before the crisis, trust and collaboration was hampered by the policy and funding environment. The crisis temporarily removed some of these obstacles and cross-organisational collaboration thrived with resources and knowledge able to flow more freely.
We must now reach out for a better world, where the inequities in end of life care known to many and so brutally laid bare through the pandemic galvanise us to action and a better future. Getting this right is urgent and a fundamental part of what it means to be a decent and dignified society.
Through the initial Covid response, innovative models of community-led support existed on the margins and started to grow rapidly as citizens mobilised quickly during lockdown, demonstrating they have the energy and skills to provide vital support locally. A continuation of this could lead us towards a model of compassionate communities, where the whole “village” can be instrumental in ensuring we’re all able to have a safe and comfortable experience of dying.
There were promising tools and technology emerging pre-COVID, but not everyone was able to access or use them. A forced shift to virtual working enabled staff to connect, grow their digital confidence and meet increasing demand, however, in some cases this also further marginalised some groups, and while acknowledging the usefulness of the digital era, we must also work to ensure people are not left behind.
Virtual consultations are not appropriate for all patients. Being able to give someone a physical assessment, do a risk assessment or manage medicines for example – to ensure that better end of life – must be done in person.
And let’s not forget the limitations that people may face if they or their carer has communication difficulties. We must remember that digital is part of the way forward but does not replace face-to-face communication at such a vital time.
What has really struck us is the energy, appetite, and opportunity for change. A network is building, of people with diverse perspectives and experiences, all asking the same question: how do we do things differently so that every person has a better experience of dying, death and bereavement?
Our actions now will answer that question; a better society is possible and we must reach out and grasp it.
Matthew Reed
Marie Curie Chief Executive
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