Carers and Families

What is known

Social support has a significant effect on the quality of life and prognosis of patients, and may reduce depression and anxiety. Lack of emotional support has been independently associated with a higher rate of fatal and non-fatal cardiac events. Caregivers of patients with heart failure often do not access formal social services but nonetheless they carry a significant burden of care. Most often care is provided by spouses of elderly patients who are themselves elderly, and who have their own health vulnerabilities. [1] 

There is moderate evidence from a systematic review of the literature that interventions to support caregivers at the end of a patients’ life can be effective, although the effect sizes are generally small. [2] Interventions that were studied included various combinations of skills training, emotional and behavioural assistance, in-home support, and enhanced technologies, and the interventions that were most effective were those that were comprehensive and individually targeted. None of the studies identified carers of patients with heart failure as a specific population.

Caregiver satisfaction with end-of-life care has been examined, although again, heart failure patients were not specifically studied. Involvement of palliative care services has been shown to improve caregivers’ satisfaction with care around the time of death. [2-3]

Implications for practice

  • Little evidence is available to guide the development of programs specifically to assist caregivers and families of patients with heart failure. It is clear that the support of a carer makes a considerable difference to patients’ quality of life.
  • As part of a palliative and holistic approach to care, support and information needs of caregivers should be routinely assessed. In particular, caregivers need to have information to manage both day to day care and deteriorating symptoms, and have plans for emergencies that are appropriate for the patient’s wishes and prognosis. Advance care planning should include the patient’s family and caregivers in almost all circumstances.
  • Cultural issues must also be considered in individualising care. Making use of culturally specific resources to help communication with patients and their families is important in understanding specific cultural issues that may affect their care. Liaising with Aboriginal and multicultural health workers, using interpreters and providing multilingual information resources will help ensure that care is delivered appropriately. 
  • The role of general practitioners is significant in monitoring the wellbeing of caregivers and families as well as of patients, and ensuring that they can access needed social services. Referrals that may be considered, depending on circumstances, include health interpreters, social workers, psychologists, or pastoral care providers, amongst others. Palliative care referrals are also frequently initiated by general practitioners in order to increase the support for caregivers.
  • Home-based care provided either by community palliative care services and / or heart failure outreach services, working in collaboration, is one model of supporting caregivers. Care planning needs to be coordinated between all the services involved.
  • Bereavement care for families is an important component of a palliative approach. Bereavement services can usually be accessed by referring the patient or their caregiver to a specialist palliative care service, depending on the local availability of resources.
  1. Selman L, Beynon T, Higginson IJ, Harding R. Psychological, social and spiritual distress at the end of life in heart failure patients. Curr Opin Support Palliat Care. 2007 Dec;1(4):260-6.
  2. Lorenz K, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, et al. Evidence for Improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008 Jan 15;148(2):147-59.
  3. Twaddle ML, Maxwell TL, Cassel JB, Liao S, Coyne PJ, Usher BM, et al. Palliative care benchmarks from academic medical centers. J Palliat Med. 2007 Feb;10(1):86-98.

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Last updated 18 January 2017