A Community of the Unalike

“Mummy, are you crying?”

Reader, I was. Although I was trying to do so as discreetly as is possible when reading a child a bedtime story. The passage that got to me was from Lemony Snicket’s The Reptile Room:

It is a curious thing, the death of a loved one. We all know that our time in this world is limited, and that eventually all of us will end up underneath some sheet, never to wake up. And yet it is always a surprise when it happens to someone we know. It is like walking up the stairs to your bedroom in the dark, and thinking there is one more stair than there is. You foot falls down, through the air, and there is a sickly moment of dark surprise as you try to readjust the way you thought of things.

Grief is the most profound unmooring. All familiar coordinates vanish. New losses reawaken and snag on older ones, creating strange new mixes and rearrangements of feelings. And because the place of loss is not a bounded territory, because loss is as much ephemeral, spiritual and social as it is material, there is no object to which it can be securely tethered or contained. As philosopher Jacques Derrida (1993) has suggested, life’s thresholds and transitions always involve the unknown, and in the case of our own death ‘a certain pas [step/not]’ (Il y va d’un certain pas). Can we even speak of ‘my death’ Derrida asks, when death is at once singular, global and culturally and linguistically specific? There’s a beautiful, if cruel, play in the meaning of the French word pas as ‘step’ and ‘not’. When it comes to death and bereavement there is no foothold.

With the coronavirus pandemic, it has been the scale and intensity of death and loss that has shaken our worlds in unimaginable ways. We have found ourselves missing a step, freefalling into the unknown. There is the grief for those of us who have lost loved ones and have not been able to be with them in their last moments, or to grieve with family and friends. And there are the uneven losses of jobs, income, future plans and dreams. The falling away of the taken-for-granted, however small, has hit hard, perhaps the ritual café coffee, visiting friends or those magical chance encounters in the workplace corridor that transform the day.

These are some of the situations that palliative and end of life care has been dealing with on a smaller scale, for the past fifty years. A doctor or nurse will know how to pace and tailor a conversation about end of life care, to meet each person where they are, even if there’s a reluctance to face death. A chaplain can provide emotional support and bereavement care to family and friends. A social worker can help with claiming benefits. They can also advise about burials abroad, as well as listening out for the emotional layers to funeral plans that can carry more profound existential questions. Where do I really belong? Who have I loved and how?

Palliative and end-of-life care is a niche speciality, even in medicine. The discipline grew out of the modern hospice movement, beginning in 1967 with St Christopher’s hospice in Sydenham in southeast London. Cicely Saunders, the founder of St Christopher’s – which sparked the modern hospice movement – imagined her hospice as a “community of the unalike”. Saunders recognised how pain is a many-faceted compound of the physical, spiritual and psycho-social. She called the approach ‘total pain’.

COVID-19 is a pandemic of total pain. As a sociologist, I have been interested in the flows between global and national asymmetries in resources. A particular concern has been with what is called ‘social suffering’ in the social and human sciences and ‘social pain’ in palliative care and the neurosciences. In the former, there is recognition that pain and distress can be produced by the social, in experiences of inequality, marginalisation, injustice and powerlessness. In the neurosciences and palliative care, social pain is believed to stem from isolation or worries about money and relationships.

For example, the pain of bereavement can be further intensified by a lack of financial resources and security. Some of us will face ‘funeral poverty’, as the average cost of a British funeral edges close to £4,000. Those who are receiving benefits or tax credits can apply for Funeral Expenses Payment (FEP) from the Department for Work and Pensions. In the financial year of 2018, the average FEP was £1,372. The Big Issue has found that even with FEP, individuals and families can still be plunged into debt. A situation exacerbated because the DWP requires an invoice. So applicants are committing to meeting funeral costs, without knowing if their application will be successful. Some people, such as the family of 13-year-old Ismail Mohamed Abdulwahab who died of COVID-19 on 30 March, have been turning to public fundraising and platforms such as GoFundMe for help with funeral costs. Initiatives like this show the gathering of new communities of care.

Other more established community-based initiatives in palliative care include health promoting palliative care and ‘compassionate communities’. The compassionate communities approach, “encourages communities to support people and their families who are dying or living with loss. It aims to enable all of us to live well within our communities to the very end of our lives”. Much needed in the Global South, where access to end of life care can be limited, these public health approaches have been translated across regions, adapting to local circumstances and civil society organising.

A decentralised network of 10,000 volunteers has transformed end of life care in Kerala where access to palliative care has been reframed as a right not a privilege. And as we demand better pandemic health and social care in our part of the world, we should not forget deep global inequities in access to health care, pain relief and end of life care. A 2019 paper in the American Journal of Public Health, found that “that 50% of the world’s poorest populations live in countries that receive only 1% of the opioid analgesics distributed worldwide. By contrast, the richest 10% of the world’s population live in countries that receive nearly 90% of the opioid pain relief medications”.

It feels vital to recognise and document how the pandemic is effecting the ending of lives, as well as the innovations in care that are taking place. The Solidarity and Care platform is now collecting and archiving stories and materials—written, visual and audio—about pandemic death, dying, loss and care, including death rituals, funerals and goodbyes. As well as using The Sociological Review’s networks, the call for contributions will be circulated to care professionals, with the support of individual practitioners and organisations such as the National Association of Palliative Care Social Workers. You can upload your contribution to the website. Submissions will be managed by the Solidarity and Care team (Bev Skeggs, Erica Lagalisse and Attila Szanto).

We are going to learn more than ever before about the role of death, grief and care in our lives. We have already had to improvise and reinvent. Let’s hope we can build a more equitable and caring world out of our unwanted wisdom. 

Note: I approached the Sociological Review’s Solidarity and Care team at the end of April to see if they could help me and a small group of palliative carers who were interested in archiving end of life experiences. I had been having conversations with care professionals as a part of research for a short article. I received more stories than I was able to do justice to and it felt important to record more widely and collaboratively how death, dying and loss are changing during the pandemic.