Title

The Healthcare Journey of Women With Advanced Gynecological Cancer From Diagnosis Through Terminal Illness: Qualitative Analysis of Progress Note Data

Document Type

Journal Article

Publication Date

9-1-2022

Journal

The American journal of hospice & palliative care

Volume

39

Issue

9

DOI

10.1177/10499091211064242

Keywords

goals of care; gynecological cancer; open notes; palliative care; progress notes; qualitative

Abstract

OBJECTIVE: To examine women's journeys with gynecologic cancer from before diagnosis through death and identify elements of their healthcare experience that warrant improvement. METHODS: This exploratory study used longitudinal progress notes data from a multispecialty practice in Northern California. The sample included women with stage IV gynecological cancer diagnosed after 2011 and who died before 2018. Available progress notes from prior to diagnosis to death were qualitatively analyzed. RESULTS: We identified 32 women, (median age 61 years) with mostly uterine (n=17) and ovarian (n=9) cancers and median survival of 9.2 months (min:2.9 and max:47.5). Sixteen (50%) received outpatient palliative care and 18 (56%) received hospice care. The analysis found wide variation in documentation about communication about diagnosis, prognosis, goals of care, stopping treatment, and starting hospice care. Challenges included escalating/severe symptoms, repeated urgent care/emergency department/hospital encounters, and lack of or late access to palliative and hospice care. Notes also illustrated how patient background and goals influenced care trajectory and communication. Documentation styles varied substantially, with palliative care notes more consistently documenting conversations about goals of care and psychosocial needs. CONCLUSION: This analysis of longitudinal illness experience of women with advanced gynecological cancer suggests that clinicians may want to (1) prioritize earlier discussion about goals of care; (2) provide supplemental support to patients with higher needs, possibly through palliative care or navigation; and (3) write notes to enhance patient understanding now that patients may access all notes.

Department

School of Medicine and Health Sciences Student Works

COinS