People who would benefit from palliative care will have different needs for accessing the care that would help them. For today’s blog, Anne Cullen and Jeannet Weurman tell us why we must develop approaches to palliative and end of life care that are more sensitive to the needs of people who have suffered psychological trauma – and ask for your help.
Early in 2019 I took a call from someone I will call Vicky (not her real name). She had been working as a care assistant when she was diagnosed with an aggressive cancer. Surgery had been delayed due to COVID-19, and by the time it could proceed it had been too late. Chemotherapy had failed and she had been referred to palliative care.
In our phone calls Vicky told us that she lived with anxiety, depression, and Obsessive Compulsive Disorder (OCD) due to childhood trauma. Therapy had helped her to live a full life and manage these behaviours, but her cancer diagnosis and subsequent feelings of anger and loss escalated her OCD. After Vicky attempted suicide, she received some support from mental health and housing services. Despite this she reported feeling profoundly distressed and anxious.
Our hospice made contact with Vicky, but she was unable to respond to our help in the form that it was offered. She managed just a couple of day therapy sessions and was then discharged as it was felt that she was not engaged enough to benefit. Eventually she came back to die in the hospice inpatient unit where she needed one-to-one care to manage her anxiety and behaviour.
Sadly, Vicky’s case is not unusual. Many healthcare professionals and social workers will recognise this picture of people carrying early trauma and/or trauma from the process of diagnosis and treatment, resulting in issues of trust, addictions and chaotic lifestyles. Such individuals can feel unsafe and alienated by the way services are organised, as reflected by Barbara Ganzel, who writes that:
‘… patient-staff collaboration and patient care may be compromised because patients struggling with trauma histories are more likely to be anxious, depressed, distrustful, angry, and/or avoidant of trauma reminders, which may include medical settings and medical personnel.’ (1)
We need to develop approaches to palliative and end of life care that are more sensitive to the needs of people who have experienced trauma. With the support of Hospice UK, the Association of Palliative Care Social Workers has initiated a project to develop trauma-informed working in United Kingdom palliative and end of life care. We envisage this as comprising:
- A community of practice to enable sharing of information, ideas, and resources, and to provide a source of advice and a way to consult with researchers and policy makers.
- A programme of research to develop a sound evidence base, tools, and guidance for trauma-informed working.
We are talking to universities who may be willing to lead the research and a number of people have expressed an interest in researching this area for their professional doctorate or PhD research projects. We are also keen to involve people with lived experience throughout the project.
We would welcome comments and discussion on this topic. We are eager to hear from anyone already doing research in this area or applying aspects of a trauma-informed approach in palliative or end of life care. Please do contact us directly to find out more or to tell us about your work in this area. You can contact Anne Cullen here and Jeannet Weurman here.
We are hopeful that by working together – with the palliative care community, researchers, those with lived experience and other key stakeholders – palliative care will be able to provide the support needed by those who have experienced trauma.
(1) Ganzel, B.L (2018) ‘Trauma-Informed Hospice and Palliative Care’ The Gerontologist, Volume 58, Issue 3, June 2018, Pages 409–419.
Links and resources
- Read more about social work and palliative care on the EAPC blog here.
About the authors
Anne Cullen, Research Lead, UK Association of Palliative Care Social Workers and co-organiser of this project. Anne is a Registered Social Worker and has worked as a practitioner, manager and researcher in various fields of practice, and workforce development, including palliative care. She works currently as Schwartz Round mentor for The Point of Care Foundation. Twitter: @ladylovestorun and LinkedIn.
Jeannet Weurman, Member of the UK Association of Palliative Care Social Workers, and co-organiser of this project. Jeannet is a Registered Social Worker, now retired from hospice social work. LinkedIn.
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