Learning from those who are dying: the key to good palliative care social work

By Gerry Nosowska

Three weeks into my social work training I started a placement in a hospice. During the 50 days that I worked there, almost everyone that I worked with died. I started off wondering what social work could offer to people who are dying. I finished the placement wishing every social worker had the chance to learn from people facing death. Their experience of loss and resilience, and the opportunity to find ways to be alongside people in those situations, goes to the heart of what social work does well.

I have just been involved in a remarkable working group which has produced a new resource for social workers: The role of social work in palliative, end of life and bereavement care. This resource aims to ensure that people benefit from good social work at the end of their life, and that those close to them are supported during this time and into bereavement.

Lived experience

The resource has been jointly produced by social workers and people with lived experience of end-of-life care. Throughout, it shares those experiences and these highlight the ways that social workers can make a difference when working alongside people who are dying or bereaved.

Here are some of the key messages from the resource for social work practice, alongside the voices of those with lived experience:

1. ‘I want health workers to be positive and express what is going on in the right way without being negative. I am very positive about my life.’ (Phone interview with woman who uses a drop in centre). Social workers can recognise people’s need for acknowledgement and for someone to listen to them. We can show confidence and sensitivity in finding the right time to talk about death and dying, so that people can be in control, plan ahead and achieve what is important to them.
2. ‘It will be my wife who makes decisions for me, when I’m no longer able. But I have it all written down, things of importance to me. It’s all written down.’  (Man in his eighties attending a hospice day centre). Social workers can support people to make decisions, advocate for, and challenge with and on behalf of people. Where necessary, we can use the law to enable people to be in control.
3. ‘Enabling people to live their lives exactly as they want – it’s more than the medication, it is something aside from treatment. Comfort? Peace of mind?’ (Bereaved man in his sixties). Social workers can ensure that someone’s experience is at the centre of what happens. We can use evidence, law and systems to enable people to live the lives they want.
4. ‘I don’t want sympathy, just support. I don’t like people feeling sorry for me. It’s just some support, I suppose, practical support.’ (Woman attending a drop in centre, age unknown). Social workers can assist people to realise their own abilities and mobilise their own resources, provide information and practical support, coordinate services and negotiate solutions. Where necessary, we can deal with bureaucracy.
5. ‘I do not like it, when people who have not been ill say to you ‘Oh you are so brave!’ I hate that. I just want to be treated as me. Just see me as I was and forget the cancer. It’s not all that I am.’ (Woman in her sixties/seventies in a hospice day centre). Social workers can help people to maintain their identity despite change. We can help people to gather memories and to leave memories behind.
6. ‘It has been hard to ask for help, I didn’t want to and I couldn’t find the words. But now I am coming round. I know it is terminal and I know I need help now.’ (Woman in her sixties/seventies in a hospice day centre). Social workers can embrace diverse needs and develop alternative ways of supporting people. We can explain how care will work and help people know how to access urgent support.
7. ‘People need to know how bloody tough this is going to be. We shouldn’t protect people. This isn’t going to be easy. It’s going to be bloody tough.’ (Bereaved husband in his sixties). Social workers can help people close to someone who is dying to get the support they need. We can help people deal with practicalities after death and follow up with people who are bereaved in the way that works best for them.

Vision for palliative care social work

Our vision for social work in palliative, end-of-life and bereavement care is that: people will have access to a palliative care social worker with the capabilities and resources to help them when they need it, and that all social workers will be able to help people, their families, and those close to them to realise the value of what they can do and give to each other at the end of their life and during bereavement, and to get the support they need.

Here is what some of the social workers we spoke said about their role:

1. ‘Tom had an impact on the whole staff team and I organised a reflective space the following week for staff to share memories and thoughts of their work with him and his family. It was well attended and enabled us all to express our feelings. Rest In Peace Tom.’ (Palliative care social worker). Palliative care social workers are a source of expertise and support for other professions and agencies. They can raise awareness, mentor and provide advice to others. They can undertake research and gather evidence of what facilitates a good death.
2. ‘We work holistically, combining emotional and practical skills, to enable people to achieve what matters most to them. We are active in improving things, we are flexible and adaptive, and we are at our best as enablers when we are least conspicuous.’ (Resource working group). All social workers need to be ready to support people who are dying, experiencing loss or bereaved.

The social work contribution

We hope that the resource will be used by palliative care social workers to raise awareness of their role and the contribution they can make, and by people who are dying and those close to them to ask for social work support. We hope that social workers will use the resource to review their practice, and to identify the support they need to develop their knowledge and skills.

Employers, leaders, commissioners, funders, colleagues from other professions and educators can use this resource to recognise the contribution that social workers can make, and to identify how to support and develop this area of practice.

Most importantly, we hope that the accounts of people’s experiences will enable social workers to strengthen our ability to support people at this difficult and profoundly human time.

‘The Story Of My Life? Somebody knows something about me. I existed.’ (Woman in a hospice day centre).

The resource was written by the Association of Palliative Care Social Workers in collaboration with the former College of Social Work and Making Waves Lived Experience Network/OPEN FUTURES Research, with support from the British Association of Social Workers and Hospice UK. Making Waves Lived Experience Network/OPEN FUTURES Research interviewed people who were willing to talk or write about their lived experiences of approaching death, caring and bereavement and what mattered most to them. We are grateful to all those people who were willing to share their stories.