Family has a particularly strong influence on care preferences, found a recent literature review.1
“Understanding people’s preferences regarding how they wish to be cared for is a core aspect of person-centered care,” notes Simon Noah Etkind, the study’s lead author and a clinical PhD fellow at King’s College London’s Cicely Saunders Institute.
The researchers wanted to understand more about how care preferences may be influenced. “Knowing this would help health systems to deliver responsive care that is more in line with people’s preferences,” Etkind explains.
The analysis of 57 articles indicates that care preferences are influenced by a complex interaction of family, individual, and illness factors. “The extent of family as an influence on preferences was surprising, as was the evidence that many people don’t have a clear idea of their preferences,” Etkind says.
In order to deliver care centered on the individual, there is an ethical duty to take preferences into account. “By synthesizing existing evidence, this research provides more detailed information to help focus care on what is important to people receiving it,” says Etkind.
Assess as Unit
Ethicists often have less of a direct role in the United Kingdom’s healthcare system than they do in the U.S. “Clinicians from across specialties are expected to take on aspects of the ethicist role and consider patient preferences,” explains Etkind.
Based on the study’s findings, the researchers recommend that a person and the family be considered together as a unit of care. In practice, this means making an effort to ask both the patient and his or her family about preferences.
“The important implication of our research is that you can’t fully assess an older person’s preferences without also knowing about the views of their family,” says Etkind.
It is not always possible for clinicians to discuss preferences together with the patient and family. It is still important to try and ask the patient about the family’s preferences as well as his or her own. In doing so, clinicians can learn whether there are conflicts. “The goal is to explore how family views might affect a person’s preferences and whether there is anything that can be done to resolve disagreement,” says Etkind.
Preferences sometimes develop during such discussions. “People don’t necessarily have fully formed preferences that are ready to go in any situation,” Etkind says. “We have found that illness context is an influence on preferences.”
It is important for clinicians to discuss preferences in the light of a person’s current situation. “If someone has been hospitalized, it might be a trigger for change in preferences,” says Etkind. “So this might be a good opportunity to discuss them.”
1. Etkind SN, Bone AE, Lovell N, et al. Influences on care preferences of older people with advanced illness: A systematic review and thematic synthesis. J Am Geriatr Soc 2018; 66(5):1031-1039.