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 “Respecting and preserving the autonomy of the elder is critical,”
said lead author Dr. Bradley Crotty. “Elders and families should
have honest discussions about preferences for information sharing
and decision-making, and share these conversations with healthcare
providers.”
To understand how patients over 75 and the family members who care
for them think about sharing medical information, Crotty and
colleagues held separate focus groups in 2013 and 2014 with 30
elders and 23 caregivers.
The elderly participants came from different residential settings -
including assisted living and skilled nursing facilities - run by
Hebrew Senior Life, an academic health care organization affiliated
with Harvard Medical School.
Caregivers were adult children, spouses, or other relatives of
residents, and they didn’t have to related to the elderly subjects
in the study.
The majority of study participants were white. Most residents and
caregivers in the study were women and had college or graduate
degrees.
Most of the elderly patients were older than 81. A third of them
rarely, if ever, used the internet, while 60 percent went online
daily or almost every day.
Many differences of opinion emerged as the two groups talked about
sharing access to the elderly patients’ health records, the
researchers reported in JAMA Internal Medicine.
Caregivers felt that having information would decrease their stress,
but patients wished to maintain control of the information to avoid
burdening their children or loved ones with their illnesses and
problems.
Many family members also thought having access to elderly patients’
records would make it easier for them to help coordinate care,
appointments and communications with the rest of the family. But
patients worried that this access would cause anxiety in their
children.
The more independent elderly patients didn’t like the idea of losing
control of their decision-making abilities and having to rely on
their children. They were willing to share information, but
reluctant to cede control of the information flow or give up the
ability to make their own choices about treatment.
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If they did have to give up control, elderly patients wanted this to
happen gradually, starting perhaps by only sharing information in an
emergency rather than as a routine on a day-to-day basis.
While the study is small, it points for the need for online patient
portals to be designed with the needs of both elderly patients and
their family caregivers in mind, said Crotty, who is director of
patient portals in the division of clinical informatics at Beth
Israel Deaconess Medical Center and an instructor at Harvard Medical
School.
“Hopefully what we learned will help inform future design of
portals, giving seniors the ability to invite family members into
their care,” Crotty said by email.
Fluidity is key in sharing elderly patients’ medical information,
and it should be possible to tailor access based on shifting
preferences of the individuals involved, the progression of
patients’ illnesses and seniors’ level of autonomy, said Dr. Pravene
Nath, author of an editorial accompanying the study.
“The bottom line is that there is no singular approach that works in
a highly generalized way,” Nath, chief information officer at
Stanford Health Care, said by email. “Preferences even for an
individual elderly patient and associated family caregiver change
over time based on numerous factors.”
SOURCE: http://bit.ly/1SdkIVn JAMA Internal Medicine, online July 6,
2015.
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