What it is: Family can still be unprepared for decline and death even when the older person is becoming frailer and less active. They need support to understand what is happening (including what happens as a person is dying), share experiences, make care decisions, and cope with loss.
Why it matters: Supporting carers and family members is part of palliative care. It acknowledges the older person’s life and connection with family as being an important part of who they are. It recognises the physical and emotional support and assistance that family members provide.
What I need to know: Carers often look to health professionals to help them understand the disease, symptom management, and end-of-life care planning. Frequent, short conversations with small amounts of information may be helpful.
Family members can also experience many emotional issues that they need your help with including:
- guilt and/or relief if they can no longer manage care at home and an older person needs to move into residential aged care
- sadness and distress at the person’s deteriorating condition
- anticipatory grief in response to impending death
- grief due to death of a loved one, an end to their role as carer, and changes to their daily routine
- distress from a sense that:
- the person’s dignity and identity are not being maintained
- they are not seen as a partner in providing care
- carers are ‘cold’ and ‘clinical’
- not enough care is being provided.
It can help if you welcome family as partners in providing care and acknowledge their understanding of the older person.
Actions
Reassure family that you care:
- Be available to talk and actively listen to the older person and their family.
- Establish a trusting relationship with the older person and treat them with respect.
- Support the older person’s dignity by attending to essential and spiritual care needs. This includes attention to physical appearance and involving them in making daily choices.
Identify the substitute decision-maker and the key contact. Establish regular communication with them and notify them of changes in health or to care.
Frequently provide small ‘chunks’ of clear and honest information about the person’s condition and any deterioration. Be sensitive and show empathy, but do not give false hope.
In family discussions, check what they have understood. Refer to previous discussions and confirm continuing appropriateness. Invite family to actively participate in family meetings and case conferences. Ask for their perspective about what they are seeing before offering your own.
Acknowledge:
- grief that starts before death
- cultural needs of the person and family.