Pain is still one of the most feared and common symptoms in palliative patients and management remains primarily pharmacological. Drugs have a role to play but they are not always effective and they nearly always come with side effects.
There is good evidence that Pain Management Programmes (PMP) improve pain control in patients with chronic conditions. They offer a holistic cognitive behavioural approach to managing pain and include the teaching of self-management techniques such as pacing, goal setting, exercise and relaxation. Unfortunately an exclusion criteria is often patients with a limited life-expectancy or rapidly deteriorating disease or condition, this effectively excludes hospice patients.
St Giles Hospice worked with Pete Moore who developed the PainToolkit and modified a traditional PMP to make it more suitable for patients with life-limiting illnesses. In 2016 they ran a pilot Palliative Pain Management Programme (PPMP). Results were positive, by the end of the six week programme:
Participants were able to employ techniques to self-manage their pain and used these before resorting to opioids with the result that they reduced the amount of breakthrough analgesia they were using HADS (hospital anxiety and depression score) scores showed category improvement. All participants said they would recommend the programme
Participants quotes; “ I have more hope of moving forward”, “ I can control my pain instead of it controlling me”, “ I don’t have to take so many pain killers” “this should be available for everyone with pain”
Following evaluation of the PPMP we have made further modifications and now offer a rolling five week programme. Through word of mouth we are getting requests to offer the programme or parts of it to other groups within the hospice who are struggling with pain, such as our Multiple Sclerosis groups.
One of the elements of the PPMP that participants found particularly beneficial was mindfulness. However some patients have so many distressing thoughts whirring about in their head that they can find it difficult to relax enough to enter a meditative state.
We are currently carrying out a feasibility study looking into the use of Virtual Reality Guided Meditation for pain control in hospice patients. At the end of the VR session we ask the patients a number of questions including whether the VR experience had any impact on their pain. Mike, a 65 year old with intractable pain from mesothelioma, replied:
“What pain? For the first time in six months I completely forgot that I had any pain.”
It is wonderful to observe patients’ body language as they relax and become immersed in a virtual world where they are free of pain.
Patient response has been so positive that some people who have used the VR kit are coming into the hospice for a top up!
We are in the process of developing a pain specific app with a tech company partner and planning a research project in collaboration with colleagues in the UK and Australia. If you are interested in finding out more please contact Sheila Popert.