Terminal illness

Most chronically and terminally ill patients are cared for in their own homes by family and friends, rather than in hospitals or hospices. These carers are an invaluable free resource and there is an increasing amount of research into their role and the experiences of caring for the terminally ill, patients with cancer, and patients with other chronic diseases. This book provides a critique of the theoretical concept of caring, carers, and caregivers. The material is based on empirical evidence from recent studies of adults with acquired chronic illnesses, including terminal illness.

Taking as its starting point the establishment of the Standing Commission on Carers in 2007 and the launch of the National Strategy for Carers in 2008, this article explores who carers are and how demographic changes are likely to impact on carer numbers. It deduces that the need for care is likely to rise significantly in the near future and as such carer numbers will grow. It argues that future policy must take this, and the importance of carers themselves being supported, into account.

Looks at the support services that are available for people caring for terminally ill relatives and friends.

Most terminally ill patients will express a wish to die at home. To achieve this, patients must rely on the support of family carers, who may experience emotional and health difficulties in providing such care, both before and after the death. Healthcare professionals can help to relieve the burden on family carers, and there is guidance available to direct GPs and other community healthcare professionals on providing good anticipatory palliative care for patients, and support for carers.

Social workers have made a significant contribution to the development and delivery of palliative care. Both palliative care and social work are rapidly evolving but, given their changing contexts and increasing workloads, can they sustain compatibility? Advances in treatment of life-threatening illness mean that people live longer in a period of palliative care.

This study aims to: estimate the costs borne by families caring for patients with variant Creutzfeldt-Jakob disease (vCJD); to contextualise results to recent initiative; and consider the methodological problems of estimating costs of care. Semi-structured interviews and a follow-up postal questionnaire, eliciting costs to families both before and after the patient's death, were carried out participants included 19 families of patients with vCJD. Cost profiles were constructed, detailing key time and financial costs associated with their relative's illness and death accursing to families.

The grim prognosis that accompanies a diagnosis of a malignant glioma affects quality of life (QOL) as patients attempt to adapt to overwhelming losses. Caregivers also experience negative changes in QOL as responsibilities grow. This pilot study measured the QOL of patients with malignant gliomas prior to tumor progression and the QOL of their caregivers. It examined negative and positive factors that impacted the QOL while highlighting positive factors often overlooked in brain tumor QOL research. Standardized QOL questionnaires and focus groups were utilized.

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned.

With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member.