Good palliative care involves care of the patient and their family and carers. A terminal illness within a family  is both distressing and stressful. Most families are resilient and are able to handle these challenges. Sometimes long-standing conflicts or mental health issues can be revealed or exacerbated by the situation.

Occasionally families cannot cope. Some families may experience difficulties that lead to emotional and physical crises. These problems may compromise the patient’s care.

TIP - Fear of being a burden, and anxiety about dependence on family members for care, are common causes of distress for patients. Exploring this issue, and encouraging open conversation between family members, can sometimes be very helpful for patients.

Responding to difficult situations

• Responding to a difficult family situation involves sensitive judgements about
  • What is “normal and appropriate” within this particular family
  • The well-being of those close to the patient
  • Their capacity to provide a reasonable level of care, and contribute to decision-making
  • How the patient themselves is affected by the family dynamics, and their own wishes
  • Cultural expectations of individuals’ roles in decision-making and in providing care for their relative.
• For difficult situations, a strategy involving the GP and the palliative care team may be extremely helpful:
  • For the palliative care team, the advice and long-term perspective of the family’s GP can be invaluable in understanding and improving a difficult family situation
  • For the general practitioner, sharing care with a multidisciplinary team which can include allied health professionals such as social workers, psychologists, bereavement counsellors, or pastoral care workers may be essential
• GPs also need a working knowledge of the legal aspects of proxy decision-making in their own state or territory. In situations of conflict, or where there is concern for the patient’s wellbeing, clarifying who is legally the “person responsible” may sometimes be necessary.
• Seeking further advice about appropriate ways to respond to cultural aspects of family behaviours may be appropriate also. Hospitals, community centres and ethnic welfare services may have health care workers who can give advice.

More detailed information …

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This page was created on 26 May 2009 and is due for review in May 2011.