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Exploring the Delivery of Palliative and End of Life Care in Patients with Pulmonary Arterial Hypertension; A U.K Based Qualitative Interview Study
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A7594 - Exploring the Delivery of Palliative and End of Life Care in Patients with Pulmonary Arterial Hypertension; A U.K Based Qualitative Interview Study
Author Block: S. Woolcock1, D. W. Hamilton2, P. A. Corris1, C. Exley2; 1Northern Pulmonary Vascular Service, Freeman Hospital, Newcastle upon Tyne, United Kingdom, 2Institute of Health and Society, Newcastle University, Newcastle upon Tyne, United Kingdom.
Introduction:
Pulmonary Arterial Hypertension (PAH) is a severe, progressive condition leading to increased pulmonary vascular resistance, right ventricular failure and death. PAH is associated with poor prognosis and WHO functional class strongly predicts mortality. Patients with PAH often have complex physical, psychosocial and palliative needs. Although palliative care is recommended in current UK guidelines, no formal recommendations exist to guide clinicians regarding the timing and delivery of palliative care and involvement of specialist palliative care (SPC) services.
The aim of this study was to explore understanding of and attitudes towards palliative and end of life care amongst patients with PAH and healthcare professionals. Broader aims included the identification of potential individual and organisational challenges and barriers to the delivery and timing of palliative and end of life care.
Methods:
Qualitative semi-structured interviews were conducted with patients and clinical staff caring for patients with PAH. Participants were recruited from three UK tertiary PAH centres. Data collection and analysis was an iterative process and followed the principles of constructivist grounded theory.
Results: 20 patients and 18 healthcare professionals were interviewed.
From analysis of the data collected, three main themes were identified;
1) Attitudes towards palliative care:
Palliative care was commonly associated with negative connotations by patients. Initial negative feelings expressed by patients often changed following palliative care exposure, highlighting a need for improved communication around palliative care. For many staff, fear of negative reactions from patients prevented them from discussing palliative care earlier.
2) Managing prognostic uncertainty:
Staff cited prognostic uncertainty as an obstacle to earlier palliative care in PAH. Whilst staff felt comfortable prognosticating for escalation of treatment, they lacked confidence to identify patients’ palliative needs.
3) The role of SPC services in the delivery of palliative care: Both staff and patients recognised that palliative care is already being delivered by the specialist team. Limitations to this included lack of time and training as well as geographical constraints. SPC services were mostly involved for the management of complex patients and providing links to local hospices.
Conclusions:
These data demonstrate several obstacles to the timing and delivery of palliative care in PAH. Results highlight the need for earlier integration of palliative care into the patient narrative in PAH, as well as improved guidance for healthcare professionals on the timing of palliative care.
This work supports the integration of SPC services within specialist teams to provide training and support for existing healthcare professionals.
Author Block: S. Woolcock1, D. W. Hamilton2, P. A. Corris1, C. Exley2; 1Northern Pulmonary Vascular Service, Freeman Hospital, Newcastle upon Tyne, United Kingdom, 2Institute of Health and Society, Newcastle University, Newcastle upon Tyne, United Kingdom.
Introduction:
Pulmonary Arterial Hypertension (PAH) is a severe, progressive condition leading to increased pulmonary vascular resistance, right ventricular failure and death. PAH is associated with poor prognosis and WHO functional class strongly predicts mortality. Patients with PAH often have complex physical, psychosocial and palliative needs. Although palliative care is recommended in current UK guidelines, no formal recommendations exist to guide clinicians regarding the timing and delivery of palliative care and involvement of specialist palliative care (SPC) services.
The aim of this study was to explore understanding of and attitudes towards palliative and end of life care amongst patients with PAH and healthcare professionals. Broader aims included the identification of potential individual and organisational challenges and barriers to the delivery and timing of palliative and end of life care.
Methods:
Qualitative semi-structured interviews were conducted with patients and clinical staff caring for patients with PAH. Participants were recruited from three UK tertiary PAH centres. Data collection and analysis was an iterative process and followed the principles of constructivist grounded theory.
Results: 20 patients and 18 healthcare professionals were interviewed.
From analysis of the data collected, three main themes were identified;
1) Attitudes towards palliative care:
Palliative care was commonly associated with negative connotations by patients. Initial negative feelings expressed by patients often changed following palliative care exposure, highlighting a need for improved communication around palliative care. For many staff, fear of negative reactions from patients prevented them from discussing palliative care earlier.
2) Managing prognostic uncertainty:
Staff cited prognostic uncertainty as an obstacle to earlier palliative care in PAH. Whilst staff felt comfortable prognosticating for escalation of treatment, they lacked confidence to identify patients’ palliative needs.
3) The role of SPC services in the delivery of palliative care: Both staff and patients recognised that palliative care is already being delivered by the specialist team. Limitations to this included lack of time and training as well as geographical constraints. SPC services were mostly involved for the management of complex patients and providing links to local hospices.
Conclusions:
These data demonstrate several obstacles to the timing and delivery of palliative care in PAH. Results highlight the need for earlier integration of palliative care into the patient narrative in PAH, as well as improved guidance for healthcare professionals on the timing of palliative care.
This work supports the integration of SPC services within specialist teams to provide training and support for existing healthcare professionals.
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