Improving Person-centred Care for Hospice Patients who have Difficulty Expressing their Needs

A significant number of palliative care patients have difficulty communicating their needs, which may be a result of dysphasia, cognitive impairment or extreme frailty. The aim of this project was to support hospice staff to provide person-centred care and improve symptom management for these patients.

The project team comprised a multidisciplinary group of hospice staff, an already established group interested in meeting the needs of people experiencing cognitive impairment. The project was developed in two phases. Phase one aimed to support nursing staff to develop a general level of skills to understand patients with difficulty expressing their needs and to avoid or relieve unwarranted distress. Phase two looked to provide multidisciplinary staff with specific skills in supportive and augmentative communication techniques and the use of a behavioural assessment tool. This report discusses phase one of the project.

The main outcomes achieved within phase one of the project were:

• A booklet was designed to ask the patient and their family and/or carers to provide information about the patient. This aimed to help hospice staff care for them in a way that promotes autonomy and dignity and alleviates distress.
• Resources were made available to support communication and help nursing staff provide appropriate occupation, relaxation and reminiscence activities which would give patients meaning and validation.
• Staff had greater understanding of the experiences of patients with cognitive impairment after a study day workshop for hospice staff on ‘The experience of cognitive impairment’.
• There was more participation, active learning and action planning as a result of a claims, concerns and issue exercise used with key stakeholders.

After eighteen months the project remains in the process of development and will continue beyond the scope of this report with elements of phase two being introduced.

This project was supported by the Foundation of Nursing Studies Patients First Programme in partnership with the Burdett Trust for Nursing.