Cancer, Mental Health and Open Notes

How much information about your cancer do you want? 

For several years, Beth Israel Deaconess Medical Center and other hospitals have offered some version of what we call Patient Site. Hospital patients can sign up and have access to their lab reports, radiology reports, physician notes and just about everything that is in their record. This has been well received although there are worries: reading does not necessarily meaning understanding, and there is the possibility of a patient learning bad news from the notes rather than directly from their doctor.

More recently, a decision was made to include mental health notes in what was open and available for patients. This was a big risk and worry. Some clinicians pushed back, fearing that patients would be distressed by what they read.

As an oncology social worker, I have always been careful about what I write in the chart because those notes have always been available to any patient who asks to see them. The old system did require making a request to Medical Records, so it was more onerous that just logging onto the computer. My longtime practice has been not to document anything that I doubted the patient would want all of her caregivers to know. For example, if we had spoken at length with someone about sexual problems or infidelity in her relationship, I would write something vague like: “Discussed some ongoing marital issues.”

When the decision was made to add all mental health notes to Patient Site, it did not change much in my routine. I did think even more carefully about what I wrote because I was pretty sure that the individual was going to read it. There were only two or three times when someone called me to complain about something I had written, and a conversation in each case soothed the feelings.

What this easy access did change was my ability to share something that other caregivers should know, but that would be painful for the patient. Specifically, I sometimes have worked with someone who was much more ill than she acknowledged or wanted to know. Usually this is to be fully respected, but there can be big potential problems if, for example, there are young children in the family who are completely unprepared for a parent’s death. I used to be able to write; “Ms. X has not wanted to directly face her prognosis and seems to be unaware of how ill she is. This raises real concerns for her family who are equally unprepared for the realities.” Clearly, if Ms. X does not want to know the reality, she should not learn it from her social worker’s note. Comments like that one no longer get written, and I tried, instead, to speak with Ms. X’s doctor about the situation.

A reassuring recent study from UCLA shows that the value of access to notes for cancer patients outweighs the worries. According to the investigator quoted in a story on Medscape, "Cancer patients who read their physician's notes report increased trust in their physicians and better understanding of their treatments, diagnosis, and side effects."

There have always been differences in the ways that people cope with cancer. Some immediately research their diagnosis and possible treatments, and feel empowered with more information. Others prefer to only listen to what their doctors tell them, to operate on a need to know basis. One style is not better than the other, and we are learning that enabling patients to easily read their medical records is one more way to support and enable their best coping.