There is a substantial body of literature documenting the effects of social support on mortality and morbidity and psychosocial adaptation. [1] In palliative care, the quality of social support provided in all three domains – information, emotional support and physical assistance and care - are key aspects of what lead to a ‘good death’. [2-4] The quality of available social support – professional and family and community-based, also determines the opportunity for patients to remain in their homes and to minimize institutional admissions to hospital, hospice or nursing homes. [5,6]
Social support: the palliative context
- Life-limiting illness requires patient and family caregiver to evaluate with health professionals current and future social support in all three domains
- Transition from active or curative care to palliative care requires further information appraisal by both patient and family caregivers
- A lack of emotional support from professional staff and/or family and friends will increase patient loneliness and isolation
- Existential distress at the end of life is improved with good social support
- Poor planning of patients’ needs for daily physical assistance restricts choice of end of life care.
Important contributing factors
- Patients from rural and isolated communities, recent arrivals (migration) and changed employment), can have less available social support
- Past history of mental illness and substance abuse can limit social support availability
- Socially isolated people with small social networks can sometimes have less social support
- The social network of younger patients may be unable to fulfil the social support needs of a seriously ill person
- Family distress or dysfunction can undermine effective social support.
Key messages
- Families need adequate information and support in the early phase of patient’s serious illness and treatment [7]
- When they do not receive this, they have greater needs, less trust and confidence in the health care system [8,9]
- Availability of emotional support influences mortality even in advanced illness [1, 3]
- Health professionals, particularly physicians, are perceived as important sources of emotional support for patients and their families in time of serious illness [10-12]
- The kind of emotional support required by patients can include attention to their spiritual needs as integral elements of their care [13]
- Family caregivers can be helped to seek emotional support for themselves from other family members and friends and health professionals [4]
- Community services that support the patient and family at home must be provided early in order to enable optimum quality of life and quality of care. Timely assessment is therefore crucial [2,14].
Active research areas / controversies
Research in the field of gerontology confirms substantial burden and physical and mental costs in family caregiving, in particular where the primary caregiver is not provided with sufficient support from other family members and professional sources.
Few studies examining the impact of daily living assistance, formal and informal on the quality of life of patients and their caregivers have been undertaken in Australia. The relationship of the type and quality of social care offered within the local community has only rarely been charted. [15] While patterns of hospital admissions for the seriously ill, linking symptom and disease status, have been reported, longitudinal studies identifying the causal links remain to be done.
Educational needs of home caregivers of terminally ill patients continue to confirm the importance of three basic elements: information on how to provide physical care, identify community resources and the changing nature of patient illness. [8, 9, 14].
Finding out more
Clinical practice guidelines for the psychosocial care of adults with cancer
Related CareSearch pages
Existential distress
Dignity conserving care
Suffering
References
- Berkman LF, Kawachi I. Social Epidemiology. New York; Oxford University Press: 2000.
- Hancock K, Clayton JM, Parker SM, Wal der S, Butow PN, Carrick S, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliative Medicine. 2007 Sep;21(6):507-17.
- Burns CM, Craft PS, Roder DM. Does emotional support influence survival? Findings from a longitudinal study of patients with advanced cancer. Supportive Care in Cancer. 2005 May;13(5):295-302
- McMillan SC. Interventions to facilitate family caregiving at the end of life. Journal of Palliative Medicine. 2005;8 Supp 1:S132-9.
- Gomes B. Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006 Mar 4;332(7540):515-21.
- Stoltz P, Uden G, Willman A. Support for family carers who care for an elderly person at home – a systematic literature review. Scandinavian Journal of Caring Sciences. 2004 Jun;18(2):111-9.
- Clayton JM, Hancock KM, Butow PN, Tattersall MH, Currow DC; Australian and New Zealand Expert Advisory Group, et al. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust. 2007 Jun 18;186(12 Suppl):S77, S79, S83-108.
- Andershed B. Relatives in end-of-life care – part 1: a systematic review of the literature the five last years, January 1999-February 2004. Journal of Clinical Nursing. 2006 Sep;15(9):1158-69.
- Ohlen J, Andershed, Berg C, Frid I, Palm CA, Ternestedt BM, et al. Relatives in end-of-life care- part 2: a theory for enabling safety. Journal of Clinical Nursing. 2007 Feb;16(2):382-90
- Wenrich MC, Curtis R, Ambrozy DA, Carline JD, Shannon SE, Ramsey PG. Dying patients’ need for emotional support and personalized care from physicians: perspectives of patients with terminal illness, families, and health care providers. Journal of Pain & Symptom Management. 2003 Mar; 25(3):236-46.
- Kristjanson LJ, White K. Clinical support for families in the palliative care phase of hematologic or oncological illness. Hematology-Oncology Clinics of North America. 2002 Jun;16(3):745-62.
- Skilbeck J, Payne S. Emotional support and the role of Clinical Nurse Specialists in palliative care. Journal of Advanced Nursing. 2003 Sep;43(5):521-30.
- Hayley DC, Sachs GA. A brief history and lessons learned from twin efforts to transform medicine. Clinics in Geriatric Medicine. 2005 Feb;21(1):3-15, vii
- Thielemann P. Educational needs of home caregivers of terminally ill patients: literature review. American Journal of Hospice & Palliative Care. 2000 Jul-Aug;17(4):253-7.
- Burns CM, Dixon T, Smith WT, Craft PS. Patients with advanced cancer and family caregivers' knowledge of health and community services: a longitudinal study. Health & Social Care in the Community. 2004 Nov;12(6):488-503.
This page was created on 23 May 2008 and is due for review in May 2010
Last updated 26 May 2008