Research into palliative care and PH
As part of our work to help the PH community access palliative care, here at the PHA UK we have instigated two important studies on this topic.
Exploring the perception of palliative care in patients with pulmonary hypertension: a qualitative interview study
This 2016 study, funded by the PHA UK, explored the understanding of, and attitudes towards, palliative care amongst both patients and healthcare professionals.
It was completed by Respiratory Consultant Dr Sarah MacRae (pictured above) as part of her PhD and involved conducting in-depth interviews with 20 patients and 18 staff.
The results revealed the term ‘palliative care’ was typically found to have negative connotations. For many healthcare professionals, the experience of receiving negative reactions from patients when discussing palliative care sometimes formed a barrier to discussing the topic earlier.
Uncertainty around the course of PAH was also cited as an obstacle, along with the difficulty of balancing active care (such as treatment with intravenous medications or transplant referral) and palliative care at the same time.
Personal experience was also found to impact upon perceptions of palliative care.
The study concluded that the provision of palliative care to PH patients in the UK faces a number of barriers – and that support and training of staff is needed to help the delivery of these services.
“Education of both patients and staff has potential to improve the way palliative care is discussed in PAH and improve patient experiences. We need to have more conversations about palliative care and address the misconceptions. So many people hear the term and think it means ‘end of life’ but there is so much more to it than that.
I think ultimately it comes down to raising awareness of what palliative care is and how it can make a difference.
This is such an important area, and it has potential to make a huge difference to patients and their families. I’m very thankful to the PHA UK for the opportunity to carry out this study and of course to those who took part. Hearing the views of patients is vital as they are the ones who are going to shape how we do things better in the future.”
-Dr Sarah MacRae (pictured)
The role of palliative care in PH: Your views
At the end of 2020, we conducted an online survey to find out what the UK’s PH community understood about palliative care. This was to help us produce the right support and resources (including this web area!)
Just 12% of people with PH have had palliative care discussed with them by their medical team. Those discussions have been with a mixture of GPs, consultants and nurses.
55% of respondents wrongly thought that palliative care is only for those at the end of their lives. And 17% wrongly thought that palliative care is only for the person with the diagnosis.
9% of respondents said they had accessed palliative care, with 6% of that number accessing it more than a year ago. This support included assessments, counselling, complementary therapies such as massage, physiotherapy, medication for pain management, home visits and an in-patient stay.
99% of respondents said if the PHA UK produced information and resources about palliative care and its role in supporting people with PH they would find this useful or very useful. The most valued resource was identified as a printed publication, and this can be ordered here for free.