Social work is an essential and invaluable part of the multi-disciplinary and holistic approach of hospice care.
Dame Cicely Saunders was herself a qualified social worker – as well as a nurse and doctor – and recognised the unique perspective and skills offered by the profession and its benefits to the patient, family, and other professionals.
Patients are referred to hospices with increasingly complex and challenging social and psychological issues (Pask, Pinto et al 2018) which are exacerbating the difficulties that can be associated with death and dying.
Hospice care recognises that death is not just a physical or medical process. ‘Total pain’ (Saunders and Kastenbaum 1997) acknowledges that suffering at the end of life goes beyond physiological pain and is psychosocial, spiritual, and emotional.
Social workers are well placed to address many of these burdens and support people at the end-of-life to achieve the “good death” that hospices aspire to provide (see summary of skills, knowledge and experience at end of the document, and Chaddock, Paul and Cullen 2022). This relieves the pressure on other members of the multi-disciplinary team enabling them to focus on other aspects of the patients’ care.
In addition, the CQC and funding bodies are increasingly interested in how hospices are meeting the needs of under-served and marginalised communities. Again, social workers have a history of working with people who are excluded from, or have been under-represented, in mainstream services. Social workers in hospices can support outreach projects and ensure that hospices can meet the needs of vulnerable patients and their families/carers – especially those with protected characteristics under the Equality Act 2010.
A social work assessment includes details of family history and social networks vital when using a compassionate community approach.
Social workers’ understanding and experience of working with children and young people have led to many of them providing vital support to children and young people with life-limiting illnesses as well as to services for children who are bereaved within hospices and national charities.
Social workers can also play a vital role in ensuring hospices meet statutory requirements to ensure the safety and wellbeing of patients and their families. They often act as safeguarding leads and oversee mental capacity assessments – they provide training to other staff in these areas. Social workers are trained in problem-solving and crisis management and can be critical in providing leadership (Cullen 2012) and supporting other staff and the wider organisation in difficult situations (Dowd 2022).
As an association we represent over 350 social workers at hospices across the UK. What we hear from our members is testimony to the extraordinary breadth and creativity of social work in hospice care. Social workers are adding immeasurable value to the lives of the patients and families, as well as to the hospices where they work. It is often work that goes unseen, or takes place out of the spotlight, but without it hospices are unable to provide the exceptional holistic care for which they are renowned.
We believe that the bigger picture shows that social workers save money and increase efficiency in hospice care as outlined above. Furthermore, patients and family members who have positive experiences of hospice care are more likely to go on to support the hospice in future.
As an association we would be very happy to discuss any of the points or issues raised in this statement and to work with hospices to ensure they benefit from the unique and invaluable skills, expertise and experience social work offers.
Liz Allam Kerry Connor
APCSW Co-chairs
Appendix
Summary of social work skills, experience and knowledge in hospice and end of life care
Psychological and emotional support
Social workers are trained in human psychological and emotional development and to facilitate the navigation of difficult or challenging inter-personal relationships. We can offer 1:1 emotional support and facilitate family meetings – applying theory and models such as systems theory, (Firth 2006) to help those involved work towards resolution. A key training of social workers is to work with the competing needs of families.
Some social workers offer support or psychoeducation to groups of patients or carers – and providing an efficient way of supporting patients and helping develop self-care skills and independence.
Hospice care recognises the importance of supporting bereaved people. Social workers are again well placed to understand the psycho-social impact of grief and work with people which includes children and young people to ensure complex grief or challenging practical circumstances don’t overwhelm them following the death of a family member or loved one.
Social and practical support
Social workers…
- Help identify and advocate for patients and carers’ welfare benefits rights such as Attendance Allowance, Personal Independence Payments and Universal Credit.
- Advocate for better and appropriate housing.
- Apply for grants and funds to cover basic household goods, or to enhance wellbeing and quality of life.
- Support patients’ and their families to liaise and negotiate with utilities and also help patient manage their digital legacy.
- Support with advance care planning, power of attorney applications and funeral planning and costs.
Statutory skills and expertise
- Social workers are experienced with complex safeguarding situations, which can arise all too often in the stressful and challenging circumstances at end of life.
- This can involve the most vulnerable such as children, young people and those with a learning disability.
- Social workers are often familiar and trained in Mental capacity assessments.
- They are also equipped to negotiate statutory processes such as continuing care funding and discharge to care homes or other social care packages.
- When a parent is dying many are involved in helping them think about talking to their children and later liaising and advising local authority social workers.
- They can liaise with statutory services such as social care and health.
Support and benefit to the wider multi-disciplinary team (MDT)
Social workers can support and advise the wider multi-disciplinary team on all of the above issues (and it is not an exhaustive list). Social work has a reflective practice and supervision model at its core – and some social workers can offer this service to other professionals. Clinical supervision is vital in the emotionally demanding and complex work of palliative and end of life care – and ensuring the safe and competent practice, as well as supporting practitioner wellbeing and preventing burnout. At its heart is listening to the very best in practitioners and to support curiosity and learning.
References
Cullen, A. Leaders in Our Own Lives. In British Journal of Social Work 2012, Vol. 43(8), pp.1527-1544, Oxford University Press.
Chaddock, Paul and Cullen Palliative Care in the United Kingdom. In Atilio, Otis-Green and Cagle (eds) The Oxford Textbook of Palliative Social Work 2022 (2nd edition), New York: Oxford University Press 2022, Ch 55, pp. 520-523,
Dowd, S. Palliative Care and Making Social Connections. In Out of the Shadows, Bartoli, Stratulis, and Pierre, Birmingham: BASW England 2022 pp. 114-118.
Firth, P. Patients and Families in F. Stiefel ed. Communication. In Cancer Care 2006
New York: Springer.
Pask, S. Pinto, C.et al A framework for complexity in palliative care; A qualitative study with patients, family carers and professionals. In Palliative Medicine Vol 32 issue 6 2018 Sage.
Saunders, C. and Kastenbaum, R (eds.) Hospice Care on the International Scene 1997 New York: Springer.