Researchers from the University of Liverpool Management School along with senior staff from Oakhaven Hospice in Hampshire have completed a study to help the hospice improve its end of life care provision.
What are the major issues facing end of life care provision in our catchment area? And what can be done to improve service delivery? These are two questions at the heart of a detailed research study recently completed by service researchers based in the University of Liverpool Management School on behalf of Oakhaven Hospice. Keen to hear the views of multiple stakeholders, University researchers interviewed GPs, district nurses, hospital staff, care home managers, and service users, also administering a questionnaire to collect the views of people visiting or attending appointments at the local general hospital.
GPs commented on problems with defining end of life care, the consequences of this ambiguity impacting upon decisions linked to referral criteria. Here the concern expressed was linked to the timing of referral and indeed what to refer patients for, the cancer pathways understood, and chronic conditions particularly problematic. GPs positioned, and welcomed, hospice care as playing a pivotal role in end of life community care. This role extended beyond support for patients and their families, to include an educational role for health professionals. Clearer communication from the hospice community on what support could and could not be offered was encouraged.
Communication and integration between different service providers was a central theme within district nurse interviews who believed more could be done to share the provision of end of life care in the local area. Team meetings and clearly defined service roles were welcomed as practical means of enhancing service delivery. The value of a shared computer system could not be over-stated. Training to support handling difficult conversations was a central theme within interviews. This was particularly important for those in the early years of their career development. Training opportunities more widely were a common subject in these consultations with multiple suggestions offered linked to symptom and medicine management and the need for different levels of training too. Although Oakhaven have been providing such training, perhaps the challenge for them now is to consider different ways of supporting learning and practice in these areas.
National health and social care policy were frequently criticised by hospital professionals with the lack of funding available for care in the community having serious detrimental effects upon the level of support available to patients. Echoing the sentiments of both GPs and DN, the need for increased integration and improved communication between different service providers was raised, the hospice community again suggested as being best placed to play a pivotal role in bringing services together. Hospice support in terms of medication advice, having difficult conversations, enhancing understanding of referral processes, symptoms and symptom management and for junior doctors were all encouraged.
Significant variations in end of life care provision existed in the care home sector. Those established talked of collaborations with other service providers, the working relationship with the hospice sector particularly valued. The need for training to support transitions into end of life care was emphasised along with having difficult conversations with family members. The need to find mechanisms for ‘normalising death’ was problematic, with the timing of difficult conversations right from the start of the relationship seen as a solution. More support linked to out of hours care was also signalled as a much needed resource with access, or complicated access, to medications out of hours a particular cause for concern.
Fear and reluctance to use hospice care was a dominant theme to emerge from service user interviews. This very much connects to the difficulties identified by health care professionals in terms of difficult conversations and the normalisation of death. Fear was linked to multiple factors including childhood memories, the word ‘hospice’ and a lack of understanding as to the nature of support on offer. Whilst for others fear was more directly linked to their own medical transition and the consequences of illness. Uncertainty was also attributed in part to the poor service co-ordination elsewhere, difficulties compounded where multiple organisations were involved. Medications were frequently used as an exemplar of complexity and an opportunity for service enhancement.
Over one third of the respondents who were hospital visitors were unsure who hospice care is for, or associate it solely with end-of-life care. One quarter associate it exclusively with cancer. One quarter are unaware that hospices offer support to outpatients, while one in four do not know about hospice at home services. 12 per cent thought hospice care had to be paid for, large sums often quoted. Respondents were uncertain of the support offered for non-pain physical problems, psychological issues and spiritual issues although comfort and respect to patients and their families were acknowledged. Most also believed that if a loved one dies a comfortable death, this helps the bereaved to cope better and therefore enhances their wellbeing. Questioning how respondents would access hospice care if needed generated comments such as ‘I would look it up on the internet’ or ‘I would ask our GP’. However, one in five admitted to not being sure how they would go about it, and a further 21 per cent admitted that they would not know at all or would not even know where to start.
The research study was carried out by University of Liverpool researchers Dr Philippa Hunter-Jones, Dr Lynn Sudbury-Riley, Dr Ahmed Al-Abdin and Dr Jonathan Moss, and Oakhaven Hospice’s chief executive Andrew Ryde and head of nursing Lucy Smith.
For more information email the research team