Prof Jane Noyes – Bangor University
In the UK, service improvement has been informed by the National Health Services: End of Life Care Strategy which aims to ensure that patients and families receive the best care possible.
However, with the growing demand for end of life care due to the increasing complexity of chronic illnesses together with limited financial resources, hospices are under significant pressure to continually redesign services. For this reason, it is important to continuously identify patient and family preferences and what they value most about care received.
The aim of this review was to explore patients’ and their family carer views and experiences and to work out what they valued about adult hospice care in the UK.
In order to gain a deeper, richer understanding the research team searched and screened health-related journals and identified a combination of studies for the review, these include:
- Qualitative studies. These are studies that gather information from focus groups, interviews, etc. and can be used to gain a more in-depth understanding of individual experiences, thoughts and opinions.
- Quantitative studies. These are studies which are based on numerical data.
The review identified shared priorities of what patients and families thought valuable. However, the team did find some differences which could be due to the different geographic settings of the hospices. The review found that:
- There are key features associated with a ‘good death’ regardless of the setting. The concept of a ‘good death’ however, can be complex and highly individual therefore highlighting the importance of a system which offers continuous holistic all-round assessments in response to the changing needs of both the patient and their family.
- The quality of pain and symptom management received frequent adoration from patients and caregivers, however, it was the ability of hospices to deliver on the psychosocial areas of care, which aim to improve emotional well-being that received consistent high praise.
- The provision of social support within the hospice setting was lacking. The team found that a social support network which understands the complexities associated with caring for an individual at the end-of-life would be beneficial.
- The team found variations in the out of hour’s telephone support, a service primarily utilised by family-caregivers.
- Additionally, variations in the accessibility of the Hospice at Home Service were evident. With some carers referencing the inequality of access to this specialist support, this demonstrates critical gaps in the availability.
- The physical and mental burden associated with the caregiver role has been shown to influence bereavement outcomes, outcomes which can be changed through the provision of suitable support. Despite advisory bodies such as NICE encouraging the offering of bereavement support to those who are closely affected by a bereavement – this approach was not adopted by all hospices.
This is the first review to explore what patients and carers value from hospice care. Review findings strengthen the existing evidence base and highlight the underpinning elements of hospice care most valued by patients and their families.
With large differences in the availability of services; the under representation of patients with non-malignant diseases; and the lack of evidence into the social needs of carers – there continues to be considerable gaps that warrant further research.
For further information and details on the research visit: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-019-0401-1