A new study shows that elderly patients would like to continue to have control of their health information. While most still agree on letting family members have access to their medical records and make decisions on their behalf, they would like to still have some form of control.
“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.”
The study was conducted by Hebrew Senior Life, which is affiliated with Harvard Medical School, over the last two years. It looked at 30 elderly patients over the age of 75 and 23 caregivers, in order to understand the dynamics of how the two groups shared medical information. The patients’ living situations ranged from assisted living to higher levels of care. Caregivers were spouses, adult children, and other relatives.
If an elderly patient isn’t disclosing important symptoms to a caregiver, that could severely affect the progression or regression of their illness. For example, almost 65% of patients over 60 say they suffer from dizziness on a daily basis. This could be made worse by starting or discontinuing medications or treatments.
Most participants were white women who were well-educated; the majority were over the age of 81. The study was published in JAMA Internal Medicine, and showed that there were numerous differences in opinion between the elderly and their caregivers.
Caregivers say that having access to the medical information not only would reduce their stress, but it would also make coordinating care and appointments easier, as well as helping keep other family members informed. However, the elderly felt that they should keep control of their own information, to prevent burdening their family and/or caregiver with their problems and illnesses. In addition to not wanting to rely on their children, they also said that sharing the information would increase anxiety.
The study, while very small, did point out the necessity of conversations and a portal for both patients and their caregivers. A medical portal may be the key to control the flow of medical information between doctors, patients, and their caregivers. This would help maintain autonomy for the patient while also giving the caregiver peace of mind.
“Hopefully what we learned will help inform future design of portals, giving seniors the ability to invite family members into their care,” wrote Crotty.