Home Death—The Caregivers' Experiences

Abstract

The objectives of this study were to evaluate caregivers' experiences concerning the care of a terminally ill loved one at home, and to compare the death experiences of caregivers with and without access to homecare programs. The primary caregivers of all the patients who died of cancer 6-18 months before the study period (1999-2001) in the Negev area were contacted. This group included 240 caregivers of patients who died in the home palliative care program and 404 caregivers of patients who died with no access to a home palliative care program. A total of 159 caregivers were interviewed, 76 from the home palliative program and 83 who had no access to a palliative care program. Death at home occurred for 80.3% of patients with access to homecare and 20.5% of those without access. Despite the fact that caring for a loved one at home was a greater financial and emotional burden, there was a greater overall satisfaction with the caring experience of those whose loved ones died at home and had access to the homecare program. Given appropriate professional support systems, home-based care at the end of life is preferable to most caregivers.

Fluctuating awareness of treatment goals among patients and their caregivers: a longitudinal study of a dynamic process

“…Seale's large UK study found patients who were aware they were dying were able to stay at home, obtain better hospice and palliative care, and to have their families with them. In contrast, those who were not aware of the seriousness of their condition were more likely to have a rushed emergency admission and to die in a hospital [14]. An equally importantly recent Swedish report confirmed that women who had only a short awareness of their husband's impending death from cancer suffered greater long-term anxiety in widowhood [15].…”

“…The importance of professional home-care support was highlighted in a recent Israeli study that found that deaths occurred at home for 80.3% patients with access to support services but only for 20.5% of those without such support, underscoring the importance of the palliative home-care support team. Those who were professionally supported expressed greater satisfaction with the caring experience in spite of the heavier financial and emotional burden than the group who did not receive home-care support [14].…”

Hospice at Home service: the carer’s perspective

“…Most studies of domiciliary palliative care focus on place of death, cost, patterns of usage and demographic characteristics of home care patients [3,[11][12][13][14]. Although Tyrer and Exley [15] claim that such services play an important role in the provision of care for people who choose to die at home, there have been few published evaluations of end-of-life services delivered in the home [16] and little research has been undertaken to explore the caregivers' views about their experience after the patient has died [17]. This paper reports the results from a postal survey of bereaved carers' views and experiences of a HAH service in one region of the UK, undertaken as part of an audit during the period 2002.…”

“…In a larger Israel study, Singer et al [17] explored 159 caregivers' experiences, 76 of whom had access to a home palliative program and 83 of whom had no access. Although the home caregivers reported a financial and emotional burden, there was a greater overall satisfaction with the caring experience of those whose loved ones died at home and had access to the home care program.…”

Atención a la familia

“…De hecho, la mayoría de los cuidadores describen su experiencia como muy valiosa 18 . Numerosos trabajos ponen de relieve lo decisiva que es la atención sanitaria al enfermo y el cuidador para determinar la percepción que éste tiene de su experiencia 22,23 . Se ha tratado de medir el impacto de cuidar mediante instrumentos no específicos que analizan la calidad de vida o la presencia de síndromes psicopatológicos como ansiedad o depresión.…”