Realising compassion in people and communities: A step towards universal access to palliative care

Realising compassion in people and communities: A step towards universal access to palliative care

– Ms. Heather Richardson, London

Introduction

This paper originally had the title “Empowering people and compassionate communities.” I love the sentiment, and it would have been easy to put pen to paper, writing in an enthusiastic way about ideas to help individuals and community groups become more confident and competent in their efforts to help people live, die, and grieve well. It is tempting, particularly at a time when so many people and groups feel disempowered in relation to their own lives and those of people around them. I want to change that experience. However, if my efforts are to have any real value, they need a re-think, drawing on all that I have learnt in the last 35 years or so of effort to develop palliative care. These reflections are not definitive or even necessarily right. But I do think that they help point me in the right direction and might offer the same to others interested in a similar journey. I will draw on my personal clinical and leadership experience from the UK and observations of care in India, but acknowledge these to be very limited. Readers are invited to draw on their own experiences to improve my initial thoughts about what the learning might be and to enact them accordingly.

Universal access to palliative care

No one is going to dispute the fact that efforts to achieve universal access to palliative care is a priority. Too many of the world’s population has little or no access to palliative care – now considered a human right. Even where palliative care services are well developed, access is often inconsistent, particularly for communities and individuals who are excluded or marginalised. The inequalities that they experience in their lives will make access to the right care at the right time particularly challenging and unlikely. This situation- for people living in India, the UK or elsewhere in the world is unacceptable, so any step towards more equitable access across the globe is both an opportunity and indeed a responsibility for professionals, governments, and broader society.

Ensuring high quality care and support 

It would be easy to think that access to care is the single priority to improve how people live, die, and grieve. I want to challenge this. I have learnt in the UK that simply having access to a palliative care service does not necessarily assure the individual who is dying or those close to them that they will get the care they want or need. Indeed, it has become clear to me that despite significant efforts on the part of professionals to identify and meet the needs of people in their care, these efforts can still be insufficient.

I recall the experience of a number of Bengali patients cared for by a hospice in East London some twenty years ago, particularly those on our inpatient unit. I have no reason to doubt the quality of the physical care they received but I know from conversations with these patients, their families and those representing them that their social and spiritual needs were often unmet. Importantly, religious and family rituals were inadvertently denied them, increasing their suffering, including experiences of isolation. They did not have access to the quality of care that they required.

More recently, I met with the wife of someone cared for in another hospice in London. She had been caring for her husband dying with a brain tumour at home, according to his wishes and her desire to meet them. As the burden of care increased, made worse by lack of paid carers available to him in the community, she agreed reluctantly to admission to the hospice. The nurses sought to offer her support alongside the care made available to her husband. They encouraged her to go home to rest and assumed the role of main carers in her absence. When she returned, the care he was receiving was different to all she had been doing, and the nurses were reluctant to adopt her approach, confident that they were doing more and better. She was both angry and upset. She wanted to function as main carer and had invested significantly in understanding and responding to his needs. She felt disregarded as his advocate and worried for his wellbeing. Whilst her husband’s care may have been safer and perhaps more effective, the nurses had inadvertently caused her (and possibly her husband) real distress. That was not access to a high-quality experience, albeit access to care in a well-respected palliative care service.

Making a compassionate response

Whether people are denied access to palliative care services or denied access to what constitutes high quality care for them, this situation needs redress. It is right to focus on increasing availability of palliative care as a key priority. Much has been written elsewhere about the effort required in terms of policy and service development to achieve this- a vital next step.

Then I want to assert that, in the meantime, there is resource already available that could be unlocked and utilised that could reduce suffering if provided at scale and in creative ways. That resource is compassion, inherent in most human beings and highly valued by those in receipt of it. Importantly, feedback tells us that those who make a compassionate response to another person feel good in this offer. This is unlikely to be a new idea for most readers of the journal, but nurse leaders such as Phil Larkin raise concerns about whether it endures within services as care becomes over professionalised, clinical in nature and when it assumed to exist, rather than being nurtured or taught (Larkin 2015).

The nurture that Larkin urges may well be about helping people realise their own capacity to respond compassionately to suffering in people dying or grieving and enabling them to feel confident to offer it to others. It might simply be an invitation to individuals or communities to engage in end of life as citizens, or some training that hones an intention to be kind, so that it is even more effective. That said, the nature of compassion is more than kindness or empathy (Kellehear 2025). It is a reciprocal experience, one in which power differentials are reduced and where all involved in the relationship experience agency. Through such a relationship people are able to see their value, their potential and can reclaim dignity and confidence.

In East London, our response to concerns on the part of the Bengali community was to invite its members to become part of a compassionate response to the gaps in care available from professionals. It became clear to the hospice that compassion was already very much part of their being and how they related to others in their community. Where some members struggled was knowing whether their input was welcome and how best to be compassionate in the face of death, dying and loss. In addition, we discovered that many of the community members had wonderful and creative ideas about how to reduce suffering in those they cared for. What they didn’t know always, was how to enact these, particularly when it called for interaction with professional services. Our role, in response, was to acknowledge and reinforce people’s aspirations to act compassionately and to provide information and training that gave them confidence to reach out to people who would benefit from relationship and care, available in this compassionate response. We actively sought, also, to legitimise and support new community initiatives that augmented professional support. Members of this community helped the hospice understand cultural preferences within the Bengali community and guided the hospice in our response to them.

For the woman whose role as carer for her husband had been inadvertently disregarded, time was spent listening to her pain, acknowledging all she had done for her husband to date and re-instating her as an important part of the team, helping to look after him in the future with expertise, insights and commitment to her husband’s wellbeing. The professional team moved from caring for her to caring with her. Power differentials were renegotiated and a reciprocal relationship in which knowledge and concerns were shared. She reclaimed her agency, and we worked well together to support her and her husband until he died.

Back to universal access and opportunities for a compassionate response

The suggestion that compassion as an inherent and creative response is attractive in the face of the significant challenge of universal access. I do not propose it as the sole solution, or indeed the most important. But I do believe it to be helpful. In advance of the development of sufficient and high-quality services there is opportunity for companionship, practical help, concern, and interest in individuals through the enactment of compassion on the part of citizens, one to another, in response to suffering in in their households, neighbourhoods and broader society. It can be facilitated by professionals; it can be enacted by nurses and others, but it is essentially a human offer and experience – one person to another.

Conclusion

As we work towards universal palliative care through greater access to medications and professional services, which can feel overwhelming at times, it is vital that we don’t forget what we already have available to us to make a difference to how people live, die, and grieve.

My suggestion is that we can bring compassion as part of our humanity to the problem of lack of access to high quality care for individuals and broader populations. Cicely Saunders invited us to draw on “a common vulnerable humanity” in our efforts to help. She spoke also of being unafraid of apparent helplessness in the face of suffering, suggesting instead that it is these very feelings that enable us to meet the person dying on the same level, then realising that “help has come to the two of us together.” This is the reciprocal experience of compassion in which power differentials are reduced and agency is reinstated for all involved.

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References

Kellehear A (2025). Speaker contribution to Brazil Encounter in Palliative Care, Sao Paulo, July 2025.
Larkin, P (2016) Compassion: The Essence of Palliative and End of Life Care. Oxford University Press.
Saunders, C (1973) ‘Foreword’ In: Lamerton R (1973) Care of the dying, London:Priory Press p8.