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. For an older person, family is part of who they are. They provide physical and emotional support and help.
What I need to know: Carers and family often look for support to understand the disease and symptom management, and end-of-life planning. Frequent, short conversations with small amounts of information can help.
Family members might need your help with emotional issues including:
- Guilt and/or relief if they are unable to continue caring and the older person needs to move into residential aged care
- Sadness and distress at the older person’s deteriorating condition
- Anticipatory grief before the older person’s death
- Grief due to loss of a loved one, an end to their role as carer, and changes to their daily routine
- Distress if the family think:
- the person’s dignity and identity are not being maintained
- the family is not seen as a partner in providing care
- the care provided is ‘cold’ and ‘clinical’
- not enough care is being provided.
Welcoming family as partners in providing care will help them to feel respected.
Identify the substitute decision-maker and the key contact. Let your supervisor know.
Note
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.
Support decision-making by asking what they understand. Refer to what family have discussed previously with the person.
Do
Tips for talking:
- Actively listen to the older person and their family
- Be available to talk with family members
- Let your supervisor know if they need more information
- Ask them what they think before offering your own thoughts.
Do
Acknowledge grief that starts before death.
Acknowledge cultural needs of the person and family.