Abstract
Background/aims: Pulmonary fibrosis is a chronic, progressive disease
with a median survival of 4.5 years. Talking about the end of life and
exploring and monitoring personal values, wishes and needs is essential
for the implementation of palliative care in pulmonary fibrosis care.
Aim: To gain insight into the barriers and facilitators to talk about end of
life experienced by patients with pulmonary fibrosis, and their partners
(p&p).
Methods: This was a qualitative study was performed from march 2021
and November 2022 using semi structured interviews and focus groups
with p&p. Interviews were performed by two interviewers with a care relationship with half of the patients. Coding and data-collection were
performed iteratively. A thematic analysis was performed using atlas.ti.
Results: The perceived barriers and facilitators revealed five themes:
Timing: P&p declare they want to talk about the end of life earlier in the
process and more often. Partners wish to be involved earlier in the illness trajectory for additional information, care support and for remembering the information provided.
Knowledge: P&p lacked knowledge about the disease resulting in poor
prognostic awareness. They also declared not knowing what topics could
be discussed with the pulmonologist of the nurse.
Initiative: P&p declare that the invitation should be from a healthcare
professional (HCP) since it is difficult for most of them to start the
conversation.
Trust: P&p prefer continuity of caregivers. Some patients feel more comfortable talking with their general practitioner about the last phase of life.
Empathy: Patients prefer a HCP with whom they feel trusted and safe.
P&p do feel when an HCP does not feel comfortable in the conversation.
Conclusions: P&p want to talk with the HCP about the end of life. P&p
need empathic HCPs who are comfortable to talk about their end of life
preferences and to regularly educate them about prognosis, care and
treatment options during the illness trajectory.
Funding: Penders foundation
with a median survival of 4.5 years. Talking about the end of life and
exploring and monitoring personal values, wishes and needs is essential
for the implementation of palliative care in pulmonary fibrosis care.
Aim: To gain insight into the barriers and facilitators to talk about end of
life experienced by patients with pulmonary fibrosis, and their partners
(p&p).
Methods: This was a qualitative study was performed from march 2021
and November 2022 using semi structured interviews and focus groups
with p&p. Interviews were performed by two interviewers with a care relationship with half of the patients. Coding and data-collection were
performed iteratively. A thematic analysis was performed using atlas.ti.
Results: The perceived barriers and facilitators revealed five themes:
Timing: P&p declare they want to talk about the end of life earlier in the
process and more often. Partners wish to be involved earlier in the illness trajectory for additional information, care support and for remembering the information provided.
Knowledge: P&p lacked knowledge about the disease resulting in poor
prognostic awareness. They also declared not knowing what topics could
be discussed with the pulmonologist of the nurse.
Initiative: P&p declare that the invitation should be from a healthcare
professional (HCP) since it is difficult for most of them to start the
conversation.
Trust: P&p prefer continuity of caregivers. Some patients feel more comfortable talking with their general practitioner about the last phase of life.
Empathy: Patients prefer a HCP with whom they feel trusted and safe.
P&p do feel when an HCP does not feel comfortable in the conversation.
Conclusions: P&p want to talk with the HCP about the end of life. P&p
need empathic HCPs who are comfortable to talk about their end of life
preferences and to regularly educate them about prognosis, care and
treatment options during the illness trajectory.
Funding: Penders foundation
| Original language | English |
|---|---|
| Pages (from-to) | 249 |
| Journal | Palliative Medicine |
| Volume | 37 |
| Issue number | S1 |
| DOIs | |
| Publication status | Published - 7 Jun 2023 |
| Event | European Association of Palliative Care World Congress: Equity and diversity - De Doelen, Rotterdam, Netherlands Duration: 15 Jun 2023 → 17 Jun 2023 https://eapccongress.eu/2023/ |