Jagtar Dhanda set up and heads Macmillan’s Inclusion Department, which leads the organisation’s work on patient experience, inequalities, peer to peer support and user involvement.
Here, Jagtar shares his reflections on end of life care inequality, and the challenges of delivering person centred care.
I think most people would agree with me when I say that access to the right end of life care shouldn’t be affected by a person’s age, identity or social circumstance.
And yet, this isn’t the case. We know from multiple studies [PDF] and data [PDF] that people from black, Asian and minority ethnic (BAME) communities, for example, experience barriers and inequalities throughout the cancer journey, all the way from diagnosis to end of life care.
The ‘challenges’ of treating BAME communities
From my experience in health and social care, I’ve heard a lot about why people think that is. One of the most common explanations I’ve heard is that there are challenging cultural, language or religious differences, and these differences are difficult to reconcile with how we typically deliver good quality care. Sometimes, it feels like this is the dominant narrative.
But it’s not a narrative I agree with; in fact, I would go so far as to say it’s flawed, and doesn’t bear up to scrutiny. When we talk about the ‘challenges’ of ensuring that people from BAME communities affected by cancer get access to and receive good quality care, including end of life care, I believe we’re actually talking about the challenges of delivering person centred care to anyone, regardless of ethnicity, sexual orientation or any other protected characteristic.
Focusing on person centred care
At its simplest level, person centred care is about working with people as equal partners in planning, developing and evaluating care to ensure it is tailored to meet their needs. I believe that person centred care gets the best outcomes; but that doesn’t mean it’s easy to do. It requires time with patients, it requires space for reflection, and it requires an appreciation that every person is unique. They may share familial, ethnic or geographical origins, but that doesn’t mean they are defined by them, or that because of this, their behaviour will be predetermined.
Working in partnership to address inequalities
As a health and social care system, we should be wary of boxing off entire populations of people as ‘hard to reach’. To me, this is too close to saying: it’s their problem; they should be more accessible. We end up spending all our time talking to communities based on already predetermined assumptions which define them as other whereas we fit the norm. We forget that everyone’s experience is unique.
Person centred care rests on the idea of working in partnership with the person and not just seeing them as a patient or a category. So, we need to challenge ourselves and accept that if someone is overlooked, the responsibility should lie with us in not overlooking them; if we think someone is hard to reach, it’s because we’re not reaching far enough.
And it’s vital that we do. The outcomes of these partnerships will show us how to deliver high quality, compassionate, person centred care that enables people to be equal partners in their end of life care, as well as how to tackle marginalisation, social exclusion and uncertainty. Those challenges are for us all, regardless of who or where we are in the UK.
Listening to the lived experience
At Macmillan, we’re trying to ensure that the stories and lived experience of all people affected by cancer shape the services we offer, and this means being proactive in seeking out, involving and listening to the experiences of everyone. It’s a process that takes time and space, and challenges us all not to fall into the trap of assuming that anyone who isn’t fitting a standardised view of an end of life care patient is a problem that needs to be fixed.
But to deliver personalised care that is actually equitable, and ensures dignity at the end of life, requires this time, and space, and challenge.
The GMC also has guidance on Personal beliefs and medical practice.