Most healthcare professionals are not fully prepared for cystic fibrosis (CF) end-of-life care, and further training and coordination between CF and palliative care teams would be helpful, according to a small, single-center survey in the U.K.
Its researchers recommended a broader survey — one nationwide, or even international — to better understand differences among centers and countries, and determine the best way to deliver training in CF end-of-life care.
The study, “Confidence and skills for cystic fibrosis end-of-life care,” was published in the journal BMJ Supportive and Palliative Care.
CF is a chronic, progressive disease, with a variable disease course. The optimal timing for discussions regarding end-of-life care, as well as how and by whom this type of care is best provided, remains unclear.
Patients are often treated by the same CF team over the long term, and close relationships may exist between them. But these team members may be limited in end-of-life care training, and feel inadequately prepared.
While palliative care teams have extensive experience in such care, they may lack “knowledge and familiarity with CF-specific issues,” the researchers wrote.
A combination of both specialty cares has been suggested for routine CF management, but helpful information on how these teams should interact over the course of CF progression is lacking.
“There is a need to develop newer models of integrated care providing specialist palliative care input earlier in the disease,” the researchers wrote.
Researchers set out to evaluate the knowledge, experience, and preparedness for end-of-life care among both CF and palliative care teams at the Oxford University Hospitals NHS Foundation Trust.
They distributed an electronic questionnaire focused on these issues to 19 members of the Oxford adult CF team, and 42 members of the palliative care team. The survey also allowed respondents to report any relevant training needs, and their preference on training’s delivery format.
In total, 35 healthcare professionals responded to the survey — 19 from the CF team and 16 from the palliative care team. CF team respondents were six nurses, six physiotherapists, three doctors, two dietitians, one pharmacist, and one clinical psychologist; among palliative care participants were 11 nurses, four doctors, and one chaplain.
Results showed that more than 60% of CF team members reported having some to extensive experience with CF end-of-life care, while 63% of the palliative care team reported minimal or no experience within the context of CF care.
Despite relatively high levels of CF end-of-life care understanding among both teams (more than 80% with somewhat to fully understanding), levels of preparedness were low. Only 11% of CF and 19% of palliative care team members reported to feel “fully prepared,” and about one quarter of each team felt minimally or not prepared at all for that type of care.
“Few members of either teams felt fully prepared to provide [end-of-life care] in CF despite extensive experience in their respective disciplines,” the researchers wrote.
Notably, 58% of CF members had no (21%) or minimal (37%) general palliative care training. Likewise, 69% of the palliative care team had no CF-specific training, and the remaining 31% had minimal training.
Importantly, all respondents showed a desire for additional education in CF end-of-life care — CF team members specifically in general end-of-life care, and palliative care members in CF-specific knowledge.
Participants also reported that the preferred method for this additional training would be shadowing the other team (CF or palliative care teams), rather than online learning or formal seminars.
“We identified complementary knowledge gaps that could be remedied by increased collaborative work and sharing specialist knowledge,” the researchers wrote, emphasizing that it is essential to ensure training opportunities match the needs of health professionals.
“Future research should establish the best way to integrate CF and palliative care teams, and deliver training in disease-specific [end-of-life care],” they wrote.
The team also noted that a U.K.-wide or international survey on CF end-of-life care could be particularly informative, allowing for comparison between centers with and without access to tailored education.
“Further work should [also] assess the patient perspective of integrating end-of- life care discussions earlier in the disease course,” the researchers added.
Marta Figueiredo holds a BSc in Biology and a MSc in Evolutionary and Developmental Biology from the University of Lisbon, Portugal. She is currently finishing her PhD in Biomedical Sciences at the University of Lisbon, where she focused her research on the role of several signalling pathways in thymus and parathyroid glands embryonic development.
