Patterns of Communication About Serious Illness in the Years, Months, and Days before Death

BACKGROUND: Communication with patients and families about serious illness impacts quality of life and helps facilitate decision-making. OBJECTIVE: To elucidate the pattern of communication about serious illness for patients who have died in an inpatient setting. DESIGN: Three hundred patients from the Swedish Registry of Palliative Care 2015–2017 were randomly selected for manual chart review. SETTING: Patients who died in a palliative care, oncology, or internal medicine unit in Sweden were selected. MEASUREMENTS: We report on the frequency of conversations at three time points, 6 months or longer before death (“Years”), 15 days–6 months before death (“Months”), and 0–14 days before death (“Days”). We also report the timing of the conversation about dying. RESULTS: A total of 249 patients were included after exclusions; they had an average of 2.1 conversations (range 1–6). The first conversation took place a median of 53 days before death and the last conversation took place a median of 9 days before death. Separate conversations with the next of kin took place a median of two days before death. We could verify a conversation about dying in only 156/249 (63%) medical records. CONCLUSIONS: Communication about serious illness between clinicians, patients, and families occurs iteratively over a period before death. Measuring the quality of communication about serious illness using a years, months, and days framework may help ensure that patients and families have sufficient information for medical and personal decision making.