Originally Published: April 13, 2013 9:58 p.m.
This is the 34th in a series of articles intended to demystify retirement living options.
The previous article discussed how duplicate prescriptions might arise, overdosing your loved one who lives in assisted living or nursing/skilled nursing. This article discusses the opposite problem: how needed care may be omitted.
Isabel's mother Gretchen has been living in a skilled nursing facility in Boston for nearly six years. When Isabel lived nearby, she visited Gretchen at least once a month. Now living in California, Isabel stays in regular contact with the facility by phone and email. She just visited in person for the first time in ten months. When she arrived, she spent a couple hours reading her mother's chart, her right as her mother's authorized health care representative.
She suddenly realized that a recent summary of her mother's condition made no mention of the osteoporosis her mother had had for the last 30 years - and no mention of the drug she was supposed to be taking for it, either. She felt like Sherlock Holmes, in the case where the important fact was that the dog did NOT bark in the night.
She pointed out the omission of osteoporosis to a nurse, and a couple days later, the nurse told her, "The doctor said that Gretchen doesn't have a diagnosis of osteoporosis, so we aren't treating her for that condition."
Isabel was exasperated by this erroneous claim, and asked a nurse to go through Gretchen's records with her to see when the diagnosis and treatment had disappeared. On one type of document, the diagnosis still showed up as recently as a few weeks earlier. On another type of record, it had disappeared about a year earlier, with no explanation, and the drug had stopped being prescribed, too. Yet in the record just before that one, the doctor had written, "Continue with the current treatment" for osteoporosis.
Isabel said to the nurse, "If you told me, 'We retested her and found that the treatment has been so successful that she doesn't need to take the drug anymore,' or, 'Because she is 90 years old, we have concluded that the drug poses more risks to her than it's worth,' I'd be fine with it. But to tell me that she doesn't have osteoporosis when you've been treating her for it for years - that's not right."
It turned out that the omission was due to a simple clerical error.
Isabel also found in her mother's file a consultation report from the endocrinologist who had been keeping an eye on Gretchen's thyroid nodules. These growths are common and typically don't need to be treated. The doctor's report said that everything was okay and advised that Gretchen have another check-up in twelve months.
Isabel found herself nodding as she read. She had discussed this annual check-up in her mother's quarterly care planning conferences, in which she participated by phone. All the key people and departments involved in Gretchen's care were part of those planning meetings, which are required by the federal government for people on Medicare. Everyone agreed that Gretchen would continue to get those annual check-ups.
Then she looked at the date on the consultation report. It was eighteen months earlier. Was the paperwork from a more recent visit misfiled? Or had the annual check-up not happened? If Gretchen hadn't been taken to the doctor, was that the result of a deliberate change to the care plan that they had neglected to tell Isabel about? Or had they just forgotten to make the appointment?
A few hours after she asked, she was told, "Your mom is scheduled for the first available appointment with the endocrinologist, in about four weeks." They had simply neglected to make the appointment.
Isabel would have understood if the doctor had decided not to send her mother to the endocrinologist for some good reason. For example, maybe there wasn't any treatment that could safely be given to someone Gretchen's age and in her condition. In that case, perhaps there was little point to getting the check-up.
But then a note in her chart should have explained this change. The chart is expected to include an accurate description of the individual's care plan.
Elizabeth L. Bewley is President & CEO of Pario Health Institute and the author of "Killer Cure: Why Health Care Is the Second-Leading Cause of Death in America and How to Ensure That It's Not Yours." To tell Elizabeth your story, write to email@example.com.