Exploring the Palliative Care Needs of Service Users with Neurological Conditions

Project Duration

October 2006 – September 2008

Funder

Huntington's Disease Association with matched funding from the Sue Ryder Care Centre for Palliative and End of Life Studies

Aims

The project aimed to produce recommendations for best practice and insights into the applicability of interventions to enhance palliative and end of life care within this client group. 

The study has gathered perspectives on palliative and end of life care delivery and outcomes from service users and informal carers, health and social care professionals, and bereaved carers. The study has taken place across three sites: 

• Six Sue Ryder Care neurological centres 
• St Joseph's Hospice, London 
• National Hospital for Neurology and Neurosurgery, London

Methods

The study used a mixed methods design to gather a range of perspectives on palliative and end of life care delivery and outcomes. 

• Case studies with service users and their family carers (n=6) over a one year follow-up period
• A quality of life questionnaire was complete by family carers (n=45)
• Interviews with bereaved carers (n=7)
• Focus groups and interviews with health and social care professionals (n=80)
• Audit of note of service users (n=37) who died between January 2005 and December 2006, to gain insight into issues relating to their care in the last four weeks of life

Outcomes and Findings

Findings show that there is limited literature on the psychosocial aspects of living with and caring for people with progressive long-term neurological conditions, particularly Huntington's disease. Discussion with staff providing care to those with progressive long-term neurological conditions identified that they value a multidisciplinary approach and actively draw on each others expertise. Staff perceived that developing relationships with service users was important to establish information about their wishes and care needs thus informing end of life care. Continuity of staffing was a key element for staff as they sought to get to know patients. Provision of end of life care was perceived by staff as challenging since deaths did not occur often. Staff identified some challenges for the delivery of palliative and end of life care: variable support from community health and social care professionals; organisational constraints; funding and access to wider services for patients. For staff working in long term care centres, limited in-house medical and nursing provision placed a constraint on the level care that could be delivered. 

For both service users and their families, moving to residential care is a significant and difficult adjustment. However the safety and security of long-term care was valued. In time, staff become regarded often as friends or second family. Service users prefer to focus on the ‘here and now’ and maintaining their current level of health and activities rather than contemplating the future. Interviews with family carers and a survey of quality of life among family carers of people with Huntington's disease demonstrated how caring for someone with a neurological condition has implications and consequences for the whole family. In spite of these difficulties, family carers experience handing over care to professionals and transition to a new role as as very difficult. 

Family carers found that, although difficult, learning about their relatives' wishes for care was important since it provided a guide to end of life decision-making once the service user could no longer participate in decision making. Both staff and relatives recognised it was not always possible to have a planned death and had similar views about what made a 'good death'. 

The audit of care in the last four weeks of life demonstrated that there is little recording of advance discussions about care or of expressed wishes for care at the end of life. Preferred place of care was not often noted. 'Do not attempt resuscitation' orders were sometimes recorded but often with no information about the way in which this decision had been made, the extent of the any discussion, who was present, or when the decision should be reviewed.