Stage IV gynecologic cancers patients who subsequently died from disease: lessons learned from their health care journey

Abstract

Objectives: Since most gynecologic cancers are diagnosed without routine screening, many women present with advanced stage disease. We propose to study the experiences in diagnosis, treatment, and end of life care of those with advanced cancers who died shortly after diagnosis. Methods: Data were obtained from electronic health records of patients diagnosed from 2012 to 2018 in a multispecialty practice in Northern California. All progress notes from ambulatory, hospital, clinic, and telephone encounters were reviewed. A codebook was created using deductive and inductive approaches. Atlas.ti qualitative data analysis software was used for analyses. Results: 4,969 encounter notes were reviewed from 32 patients (median age: 61 years, range: 39-89) with stage IV gynecologic cancers who died shortly after diagnosis. Whites, Hispanic, Asian, Others/unknown comprised 47%, 22%, 19%, and 12% of the sample, respectively. Nine had ovarian, 17 uterine, 3 cervical, and 3 vulvovaginal/other stage IV cancers. The median time from diagnosis to death was 9.2 months (range: 2.9-47.5), from diagnosis to palliative care referral was 6 months (range: 0-25.5), and from palliative care referral to death was 2.36 months (range: 0.5-46.5). 50% were seen by an outpatient palliative care team and 56% received hospice care prior to death. The mean number of notes per patient was 155 (range: 14-330). 443 were associated with oncology office visits (mean: 13.8 per patient; range: 1-44). Qualitative analyses of encounter notes revealed that most patients had nonspecific symptoms with a long interval from symptom onset to cancer diagnosis, requiring numerous visits to primary care, specialty providers, emergency admissions, and finally oncologists. From the progress notes, it was often unclear if the prognosis was discussed with patients and their families, or if it was only communicated to other providers reviewing the charts. Based on analyses of patients attitudes, we found that a combination of patient age, beliefs, family support system, emotional wellbeing, and ability to communicate influenced readiness to discuss goals of care and to begin hospice care. Among these 32 women, 7 died in hospital, 18 at home, and 7 were unknown. Those who died in the hospital were younger (mean age: 57.7 vs 63.1) and more likely to be Hispanic vs White, Asian, or others (43% vs 13% vs 17%, or 25% respectively). Conclusions: Metastatic gynecologic cancer is challenging to diagnose and often results in a complex and prolonged workup. Only half of our studied patients used palliative care and it often came late in their illness. Age and ethnicity may be related to location of death and hospice use. The implementation of earlier palliative care and discussions of goals of care for these terminally ill patients should be emphasized.