“I’m on a mission to build communities that are death-informed and grief-informed.”

The face of death has changed radically in recent decades, as more and more people die later in life, often after prolonged illness.

“Communities must be supported to reclaim death, dying and grief as a social concern.”

Healthcare is responsible for dealing with death and dying, with potentially futile treatments continuing well into the final hours of life.

In fact, modern medicine can treat disease and relieve symptoms, but is still relatively incapable of addressing the deeper existential issues that impact quality of life, such as: B. the distress, the loneliness of chronic illnesses and the proximity to death among patients and their carers.

But death and dying are nothing new to human cultures. However, the increasing medicalization of death has meant that the ability of communities and families to maintain a space for the process of dying, as well as the skills and knowledge imparted through tradition and folklore, have been significantly weakened and almost lost.

From the assumption that death is an organic and natural regenerative process, death has become something to be feared, something that happens behind a curtain and closed doors.

As healthcare in general and hospices in particular grapple with a funding crisis that is impacting their services, perhaps there is an invitation to open a dialogue about death and dying in the community, around our cultural framework with its diverse and countless stories, conversations and traditions help address our death phobia and pervasive distrust of the “finality of death.”

After all, death is more than a physiological event. A culturally anchored support network around the patient and the caring relatives enables the normalization of death, dying and grief.

Building community capacity with palliative care, dying and grief skills is also key. This is an essential life skill as each of us will be directly affected by death, dying and grief throughout our lives.

As a palliative care nurse, my mission is to build death-literate and grief-informed communities so that they can be viable, cost-effective, and robust sources of culturally informed support for palliative care patients and their families.

As a hospice nurse, I spent almost a year taking part in a community engagement project, speaking to the most resource-poor communities in North London, with the aim of understanding their experiences of chronic illness, dying and death in their communities.

The results of the project powerfully expressed the lack of knowledge about what the dying process entails, the intracultural stigmatization of cognitive disorders such as dementia and cancer, which leads to delayed disclosure, the experience of poor communication in healthcare, which creates feelings of low self-esteem and reinforces systemic racism, with advocacy understood as the right to life-sustaining treatment; regardless of the impact on quality of life and the highly gendered role of care, with women expected to provide care even when it is stressful and has negative impacts on health.

This commitment led to significant service development with the creation of educational resources to promote understanding of the dying process, autonomy of decision-making, the cultural and spiritual frameworks that supported individuals and their families, and the stories and folklore that co-created became local community members and faith leaders in London.

An innovative model called the Neighborhood Network in Palliative Care, developed in Kerala, India, is closely linked to my work in North London and I am really delighted to have won the Churchill Fellowship in Palliative Care 2024 to support my Work to further expand the Kerala model through your studies.

As we face an aging population, communities must be empowered to make death, dying and grief a social concern again, and their ability to bring these issues back to where they belong – the family and the community – needs to be strengthened. The time for such community capacity building is now.

Rekha Vijayshankar is a nurse to the Queen and dDeputy Director of Quality and Clinical Governance, Marie Curie