‘Person-centred care’ has become a buzzword, particularly when it comes to treating those nearing the end of their lives. At long last a culture of medical paternalism is shifting towards a more people-focused approach to end-of-life care, and that can only be a good thing. However, we know from policy reports and feedback from patients and their loved ones that this is not necessarily being realised on the ground.
What are the barriers that continue to stand in the way of people receiving the end-of-life care that’s right for them? And what can we do as GPs to address these issues? To find out, we must listen to the real experts: dying people, their loved ones and carers.
A charity we are currently working in partnership with at my practice in Lambeth, south east London, has done just that. Compassion in Dying aims to inform and empower people to exercise their rights at the end of life, and to become better informed about the obstacles preventing people from receiving truly personalised care it consulted with over 600 dying people and their carers.
Providing clear information
The research reveals that many people are not being given clear information about their condition, adequate support to make care and treatment decisions, or sufficient opportunities to discuss their future care. People reported feeling underprepared for what may lie ahead, and that they don’t know what questions they can ask even if they do want more information. How can we expect to deliver person-centred care when these basic needs are not being met?
Using the real voices of those who contributed to their research, Compassion in Dying has developed a new booklet which aims to address some of these barriers by empowering dying people to make the decisions that are right for them.
What Now? Questions to ask after a terminal diagnosis is designed for people who have received a terminal or life-limiting diagnosis, their carers and loved ones. It contains thoughts from real people on diagnosis, living with terminal illness, the impact on loved ones and how to make decisions that are right for each individual.
It empowers people to ask questions and find out the information they need so that they can make informed decisions about their care and treatment which allow them to live as well as possible in the time they have left and have what they consider to be a ‘good death’.
This booklet arms those diagnosed with a terminal illness with the tools they need to make end-of-life decisions that are right for them. At a time when people can feel particularly vulnerable and powerless, this resource can help them feel informed and in control.
The GP's role
But it can also be of great value to GPs. We may not be the ones giving a terminal or life-limiting diagnosis, but we are in a prime position to help ensure that these patients are getting the care they want and need when back in the community.
We can use this resource to reflect on whether we really are providing enough clear information, answering questions (whether voiced or left unsaid) or adequately preparing people for what might lie ahead. We can hardly expect those we care for to make considered, informed decisions if we are failing to provide them with the information and compassion they need.
This booklet is an eye-opening insight into what some of our own patients may be thinking. It is our role to encourage them to voice their questions and concerns and to really listen. It is only then that we can play our part in achieving truly person-centred care at the end of life.
Dr Mitra is a GP in south London