Dying Matters – What Can You Do About Pain?
This year, for Dying Matters Week 2017, we asked ‘What Can You Do?’ to get people more active in planning for dying death and bereavement and helping support those who may need it, be they friends, family or in your wider community. One of the key questions was ‘What Can You Do About Pain?’ – whether it be managing it at home or supporting others to do so in the community.
People’s top priority at the end of life is usually to be free from pain and discomfort. But for too many people choosing to die at home means that their symptoms, particularly pain, may not be as well managed when compared to other care settings. People who choose to die at home should not have to wait several hours for someone to come and administer pain relief, and we know there will never be enough capacity for paid staff and professionals to do this.
A Com Res opinion poll undertaken on behalf of Dying Matters in April 2017 found that only 16% of people think that caring for people that are dying is a job only for professionals. 74% of people said they’d be willing to help friends & neighbours dealing with dying, death and bereavement and 61% said that they ‘d even be willing to provide pain relief injections, with training & mentoring.
Clearly, the public is ready to do more to help people in communities going through dying, death, and bereavement. This could even extend to being on-hand to actively administer pain relief to people who need it. With more and more people wishing to die at home, we need to recognise that the public is willing to provide the care and support that is needed to enable greater choice for people in the last days of life. It is now up to commissioners and providers to act on this, and work with people and communities to support them.
This is in line with the Ambitions Framework for Palliative & End of Life Care, which sets out the way that local health and care organisations should be working together to improve people's quality and experience of care. In particular Ambitions 3 ("Maximising Comfort and Wellbeing") and 6 ("Each community is prepared to help").
Here’s a link to a BBC report about this, which shows an interview with a nurse supporting a family carer to administer pain relief, as well as an interview with our Director of Policy & External Affairs, Simon Chapman.
In case you missed them, a number of publications were released during the week which helped frame the question ‘What Can You Do About Pain?’:
1. A Com Res opinion poll undertaken on behalf of Dying Matters in April 2017 which found that 39% of British adults say they would feel comfortable giving a pain-relief injection to someone who was dying and wanted to stay home, after receiving some training and with no additional support. This rises to 61% with doctor or nurse supervision the first few times.
2. Public facing guidance ‘What can you do about pain?’ aimed at providing information on the different pain management options available to people who want to die at home, and for the families and carers looking after them.
3. ‘No painful compromise’ - a guide for commissioners and providers to improve pain management for dying people at home. The report found that staff shortages and increased caseloads prevent effective pain management at home for dying people, only around half of healthcare professionals who support dying people at home saying staffing levels are sufficient to meet their pain management needs. Importantly, the report found that professionally-led models are struggling to meet people's needs, and that new approaches are required.
Additionally, you might be interested in ‘How would I know? What can I do?’ - a pain management guide to help someone with dementia who is in pain or distress, released by NCPC in 2012.