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End of life and dying matters: needs of clients and family caregivers

World population is increasing in size, with varying demographic proportions in age structure and composition. For many countries there is an increase in ageing populations and consequent implications for government policies, public services, financial resources, health and social care and the voluntary sector. This has been reflected in national government policies and global initiatives focused on older people and healthy ageing, also in relation to support and care by formal and informal carers to enable older people to continue living at home in their communities.

It is a given that we will all die at some time in our lives, for some prematurely and others after a long life lived. Most developments in end of life care have been pioneered in palliative care and hospice care, predominantly in the field of cancer. Examples have been the development of hospice care, out-reach work by hospices as part of intermediate care, such as hospice at home or voluntary sector provision of nurses for home nursing. The spotlight is now on end of life care, the palliation of symptoms, decisions regarding advance care planning and preferred place of death to achieve a good death taking into account individual’s preferences, values, cultural and religious practices and beliefs. Evidence of this is contained in national initiatives and pathways (for example, National End of Life Strategy: DH 2008, the Liverpool Care Pathway for the Dying Patient: Ellershaw & Wilkinson 2003). Recent surveys have found that more people die in institutions (hospitals or care homes) than at home although this varies between countries and may reflect national policies, cultural differences and service provision (Lloyd 2010, pp. 621–623). There is an opportunity to share globally good practices and policies to the benefit of all.

It is the realization that dying matters and that death is inevitable as part of normal ageing that perhaps leads people to wish to die at home with their families, if they are able and supported to do so. There has been a shift in some policies and services to support this. Likewise there is a shift in research focus from hospices and hospitals to communities, home care nursing and care homes. The paper by Stajduhar et al. (2011) in this issue of JAN illustrates this shift. It presents their study of home care nurses’ decisions about needs and amount of services at the end of life with particular focus on clients and family caregivers’ needs, capacities, resources and service requirements. This is an illuminating study and provides an important direction for future research. It also builds on from two systematic reviews they have undertaken on this topic (Funk et al. 2010, Stajduhar et al. 2010). Just as midwifes strive to ensure a good birth and the delivery of new life, nurses can be there to help support and care for people at the end of life, both occasions as witness of privilege.

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