National Voices' recent report, Person-centred care in 2017, confirmed that despite collective efforts towards a person-centred NHS over the last 20 years, steady progress towards this ambition is beginning to deteriorate.
At the end-of-life, the scope for person-centred care to make a positive impact is huge. But dying people don’t have another 20 years to wait, and the Department of Health’s uninspiring update on the Review of Choice in End of Life Care, also published last week, suggests that the current trajectory will not lead to the change that is needed.
At Compassion in Dying, we support people to plan ahead for their end-of-life treatment and care. By sharing their values and preferences, people are more likely to receive the end-of-life experience that’s right for them.
The report’s themes echo what we see being played out in people’s everyday lives:
- Low levels of personalised care and support planning
- Lack of support for the majority of carers
- Inequalities between different ethnic groups
It’s clear that while ‘person-centeredness’ has become part of the end-of-life discourse, it is still not being implemented widely enough in practice.
We have found that to make end-of-life care person-centred, a one-size-fits-all approach won’t work. Through our community outreach service, My Life, My Decision, we have helped Somali women living in Tower Hamlets and a community of South Asian women living in Lancashire to think about and document their wishes for the end of life. There are significant cultural differences in how different communities understand a good death. For example, many of the women we’ve worked with emphasised that they would prefer to be alert at the end of life rather than have their pain controlled through sedation, as they want to say the Shahada (the Muslim profession of faith, recited in the moments before death).