Consumer driven decision making in aged care is not straight forward. Clearly everyone should be able to make their own decisions and live the life they choose. The Aged Care Standards and the Charter of Aged Care Rights reinforces this (Aged Care Standard 1 and Aged Care Right 7). In practice, does upholding this right diminish, the older and frailer someone becomes?
Often family members have as much input into expressing what services are delivered, who delivers them and how they are delivered as the older person who is the one in receipt of care.
This input can be as an advocate for the older person as they age, providing a supportive voice to ensure their wishes are understood and delivered. This hopefully results in the views expressed by the family member on behalf of the older person being 100% aligned with what the older person would have communicated themselves. No tweaking, no adjusting, and no amending.
On the other hand, this input can result in messages and wishes being filtered. This filtering process can sometimes result in the messages reflecting more the wishes and views of the family member rather than the older person and this may or may not align with the views of the older person in receipt of care.
So, what does this mean? As part of a broader survey, we asked a small group of older people who were in receipt of home aged care services and their key family contact to select between two different perspectives associated with risk taking. We asked the respondents to place a mark between the statements that best represented how important each was to them relative to the other. For the older person it was their opinion. For the family member it was about the older person. If they were more aligned with say the statement on the right, then the mark was placed closer to that and vice versa.
What we found was that there were similarities between the older person and the family member’s views on the same topic of risk and safety. Clients (58.8%) and family members (46.2%) indicated a preference towards the right sided statement “I can exercise risk to the degree I choose” rather than the left sided statement “I am wrapped in ‘cotton wool’ to reduce risk”.
There were however some differences in the weightings of their responses. Clients overall felt they resonated more strongly with the right side statement than did the family members on their behalf. This was more than 12 percentage points higher. The analysis also showed that whilst more clients identified with the right side statement, there were some that strongly resonated with the left side ‘wrapped in cotton wool’ statement. The family members responses were more neutral at 53.8% vs 29.5% for the older person.
There are obvious benefits to having input from family members, particularly when a client is unable to express their preferences.
The take home message is, if feedback on care experiences and preferences are being gained primarily from family members, then be aware that there may be some unintended filtering which could result in the older person’s views not being accurately presented.