SAN DIEGO – Fewer than half of gynecologic oncology patients surveyed at a major cancer center had completed advance care directives regarding their preferences for end-of-life care, and most of those who did had no copy of the documents in their medical records, Dr. Alaina J. Brown reported at the annual meeting of the Society of Gynecologic Oncology.
“These findings indicate there is room to improve advance directive planning documentation in our patient population,” said Dr. Brown, a fellow in gynecologic oncology and reproductive medicine at the University of Texas MD Anderson Cancer Center in Houston.
“Providers must identify and address barriers to advance care planning documentation in order to assist patients in achieving their end-of-life care goals ... I think we need to focus on educating ourselves and becoming proactive about trying to have these conversations earlier in treatment instead of when a patient is quite ill and we know that they’re going to pass away within the next week or so,” she added.
One barrier has recently been overcome by Medicare’s new policy – effective beginning this past January – of providing reimbursement for advance care planning as a separate and billable service.
In addition, Dr. Brown’s survey of 110 gynecologic oncology patients identified two significant psychological barriers to advance care planning: high levels of death anxiety and a feeling of distress that symptoms and/or treatment side effects are interfering with daily activities and relationships.
The survey showed that while 75% of the patients were familiar with advance care directives such as a living will or medical power of attorney, only 49% of subjects had actually completed those documents, and a mere 18% had a copy of an advance care directive in their medical record.
Half of the subjects had recurrent cancer, the rest were visiting the gynecologic oncology service for active surveillance. Only a minority of those with recurrent cancer had completed advance care directives.
Study participants completed two validated, self-administered questionnaire surveys: the 19-item MD Anderson Symptom Inventory (MDASI), which assesses patient-reported disease symptoms and treatment side effects during the previous 24 hours, and the 15-item Templer’s Death Anxiety Scale.
The mean MDASI Interference score, a measure of overall symptom distress and the impact of symptoms on daily life, was significantly higher in gynecologic oncology patients who hadn’t completed advance directives than in those who had. Similarly, patients who hadn’t completed advance directives scored significantly higher on the death anxiety metric.
“Patients with recurrent disease and those with increased disease symptom burden and death anxiety should be targeted for advance care planning discussions, as they may be less likely to engage in advance care planning activities,” Dr. Brown concluded.
She noted that prior research in other medical fields has shown that holding early planning discussions about end-of-life issues improves the likelihood that a patient’s final wishes will be honored, reduces utilization of hospital resources at the end of life, and reduces distress among the patient and family members. It’s important for gynecologic oncologists to step forward in this area because they are in a unique position: they often manage a cancer patient’s surgical care as well as chemotherapy and then later assist in the transition to end of life, she added.
At the conference session on palliative care where Dr. Brown presented her findings, audience members said the 49% completion rate for advance care directives that she found in her study was actually quite impressive; at many gynecologic oncology services the rates are in the 20%-25% range. The audience consensus was that much of the blame for the low rates of advance care planning documentation in their field belongs on the shoulders of gynecologic oncologists themselves.
“I would say that it’s entirely our fault,” declared session codirector Dr. Stephanie Blank of New York University.
Dr. Brown said as a result of her survey findings, she and her colleagues are working to change the institutional practice at MD Anderson such that completion of advance care directive planning directives with documentation in the medical record becomes a quality-of-care goal within the first few patient visits.
“In the past we had a social worker come to those patients who checked off a box on a form in the waiting room; now we’re trying to be more proactive about having a provider engage the patients early on,” she explained.
She reported having no financial conflicts of interest regarding her study.