Abstract
Background
Palliative care is suboptimal in pulmonary fibrosis. Symptom burden is high despite evidence-based interventions, guidelines, and information resources. The application of existing knowledge and methods to optimally manage palliative and end of life care for people with pulmonary fibrosis in the UK has not been realised.
Aim
To establish patient views and understanding of how palliative care services and approaches can better meet the needs of people with pulmonary fibrosis. To identify the current barriers and facilitators to receiving palliative care services.
Design
Qualitative exploration of patient views via semi-structured interviews and focus groups. Content analysis was conducted.
Setting/Participants
The study was conducted from March–August 2024 within an Interstitial Lung Disease Specialist Centre, based in an NHS acute Trust.
Results
Two focus groups and four interviews were conducted, involving nine patients. Four overarching themes were identified as to how palliative care can better meet the needs of this group: (1) establishing mechanisms for identifying and addressing palliative care needs; (2) open channels of communication with healthcare professionals; (3) the importance of a palliative care approach within respiratory, community and specialist services; and (4) support for unpaid/family carers.
Conclusions
Patients highlighted the importance of person-centred principles and services that adapted to their needs (such as real-time telephone support), rather than services that imposed their own requirements on the patients. Understanding how existing palliative care provision can meet this standard could help improve the palliative and end of life care for people with pulmonary fibrosis.
Key Statement
What is already known about this topic?
Pulmonary fibrosis is associated with significant patient and carer need, and high symptom burden
Pulmonary fibrosis is associated with poor outcomes relevant to palliative care, with limited use of advance care plans (ACP), high levels of end-stage healthcare utilisation, frequent hospital deaths and poor symptom control.
There is consensus that palliative care is beneficial for this condition, but the model of care required is not clear.
What this paper adds?
Patients with pulmonary fibrosis do not readily distinguish between the care they receive from the specialist respiratory services and that which they receive from palliative care services.
Accessibility of services is of key importance in addressing palliative care needs.
Person-centred principles are critical to ensure that services reflect the varying information and care needs of this population.
Implications for Practice, Theory or Policy
A “one size fits all” approach to palliative care is unlikely to meet the needs of people with pulmonary fibrosis.
Provision for remote real-time telephone or video contact is important for this group who, due to oxygen and other care needs, may find hospital visits challenging.
More work is needed to understand how palliative care services and approaches can best meet the needs of unpaid/family carers who support people with pulmonary fibrosis.