Is Routine Discharge Enough? Needs and Perceptions Regarding Discharge and Readmission of Palliative Care Patients and Caregivers.

Abstract

Context: The hospital discharge process is fraught for patients with serious illness and their caregivers.

Objectives: We sought to understand palliative care patient and caregiver concerns regarding the patient-centeredness of the hospital discharge process.

Methods: We conducted semi-structured interviews with 11 patients receiving palliative care and 4 caregivers. Caregivers were interviewed with patient or alone, for a total of 13 interviews. Interviews were focused on the patient-centeredness of the discharge process, completeness of discharge education, and readmission. Transcripts were analyzed using an inductive approach with open coding.

Results: We identified four themes: (i) symptoms, (ii) relationship to illness, (iii) variance in patient-provider alignment, and (iv) discharge readiness, including readmission. Physical and non-physical symptoms were common, though non-pain symptoms were more frequently concerns. Illness understanding and empowerment by the discharge process were low, with participants seeking more information. Alignment varied by provider with closer relationships with bedside nurses and outpatient providers, especially oncologists, than inpatient providers. Readmission was not perceived to be avoidable but was associated with symptom burden. Discharge readiness was mixed; common concerns included lack of clarity regarding next steps and post-discharge services. Up to 40% of participants reported incomplete education on given topics.

Conclusion: Our qualitative study of patients and caregivers receiving palliative care identified unmet needs in the discharge process: non-pain symptom burden, gaps in empowerment and illness understanding, and mixed discharge readiness. Relationship to care informs subsequent engagement with care and medical decision-making. Future interventions should focus on strengthening patient and caregiver empowerment and illness understanding.