Patients With COPD and Their Caregivers Have Unmet Needs, Despite Increasing Integration of Palliative Care

Patients with chronic obstructive pulmonary disease (COPD) and their caretakers have significant unmet needs in palliative care, including managing fear and uncertainty, daily living, and financial concerns. Despite these needs, a study in Chest indicates that palliative care is increasingly being integrated into COPD management in the United Kingdom.

In this multicenter, qualitative study, a team of UK researchers evaluated data collected from semi-structured interviews of 20 patients with COPD, 6 caretakers, and 25 health professionals from 2 primary and 2 secondary COPD services and 2 specialist palliative care settings. Topics assessed in the interviews related to symptoms, service provision, exacerbation management, and experience with palliative care. For healthcare professionals, the interviews explored referral pathways and integrated palliative care support.

There were 4 main themes identified throughout the interviews: exacerbation management; palliative care needs, access to palliative care; and integration of palliative care support. In particularly, patients and caretakers described exacerbations as “traumatic.” The most common themes among patients and caregivers alike were uncertainty and fear. Identified needs among patients and caregivers also included reassurance, rapid medical access, home care, and finance advice.

In terms of palliative care, most patients as well as healthcare professionals believed the term applied only to cancer. Health professionals perceived timely palliative care as an important aspect of COPD management. While palliative care was integrated in some COPD services, there was variation in models of integrated working across different regions.

Factors respondents perceived as influencing the degree of integrated palliative care support included nature of disease (fluctuating health, comorbidities), patient- and caregiver-related factors (uncertainty and fear, engagement of palliative care conversations), clinician-related factors (understanding of palliative care, early identification of severe disease), and organizational-related factors (integrated psychological support, effective information sharing systems).

Healthcare professionals perceived reliable screening tools and needs assessment, embedded psychological care, and enhanced training in palliative care and communication skills as important factors for improving timely palliative care referrals and optimizing management.

A limitation of this study was the inclusion of only White British patients, leading to study results not applicable to experiences among patients from minority communities.

The researchers concluded that a standardized “screening and needs assessment tool is required to achieve early palliative care and address the identified needs of” patients with COPD and their caretakers.

Reference

Fu Y, Mason A, Boland AC, et al. Palliative care needs and integration of palliative care support in chronic obstructive pulmonary disease (COPD): a qualitative study. Chest. Published online January 9, 2021. doi:10.1016/j.chest.2020.12.055