A comparison of palliative care needs and palliative care services for community based patients with cancer and non-cancer illnesses in the Greater Glasgow NHS Board area

摘要

Recognition and education: It is important to ensure the inclusion within palliative care of chronic, progressive incurable diseases and for this additional workload to be adequately staffed and funded. There is a need to promote a clear, simple and friendly definition of Palliative Care for health care workers, patients and their carers. Education of the service providers, patients and the public to increase awareness of the palliative care needs of patients with non-cancer diseases will promote recognition and acceptance of this concept. Patient’s choice: There is a recognition among the GPs and distinct nurses for patients to be given the choice of place of care and death, and for patients and their carers to be involved in partnership in care decisions with healthcare professionals from the initial stages. This could be increased and improved if the generalist palliative care providers listened to and understood the needs of patients and their carers and promoted patient centred planning for all future strategies in palliative care. Co-ordination and communication: There is a need for improved communication and co-ordinated working between primary healthcare, social work community care, specialist palliative care teams, the voluntary sector and the acute setting. Joint working and multi-agency working groups and managed clinical networks could contribute to this. Services: Finite resources have led to service remodelling and redesign in both voluntary and statutory sectors. There were substantial changes in service provision during the study period. Over the three-year period of the study a greater number of services for patients with non-cancer were discontinued. There is a lack of specialist palliative care services in the acute sector. There is also a need for improved services including availability of hospice beds, palliative care services in care-homes and in particular social work services appear to be under provided. Health care professionals: The percentage of GPs and district nurses who had used current specialist palliative care services for their patients with cancer was more than double that of those who had used similar services for their patients with non-cancer diseases. GPs and district nurses also placed more importance on future palliative care services for their patients with cancer in comparison to similar services for their non-cancer patients. Compared to the GPs, the nurses had more contact with patients with non-cancer diseases and perhaps because of this had a greater recognition of the need for palliative care services for non-cancer patients. Service users: Patients with neurodegenerative diseases were younger compared to those with cancer. A higher percentage of patients with neurodegenerative diseases needed help with their daily activities compared to patients with cancer. There was a longer time interval between first appearance of symptoms and confirmation of diagnosis for patients with neurodegenerative diseases compared to patients with cancer. Lack of information was an issue highlighted by both groups of patients. The health status and care of the patients with neurodegenerative diseases was found to be inferior to patients with cancer. Resources: Funding was an issue identified by all service providers. Despite the desire to help with non-cancer diseases, providers of specialist palliative care and primary healthcare have their finite resources for palliative care fully utilised with cancer patients at present. The service providers agreed that they would increase their present workload, but were restricted by lack of resources. Research: There is a lack of evidence on the needs of non-cancer patients, on the best ways of meeting these needs and on the effectiveness and acceptability of services. This is necessary to provide the evidence to justify the resources (human and financial) that need to be allocated to make palliative care services to all on the basis of need and not on diagnosis