It’s time to tackle health inequalities at the end of life

The Marmot Review, a seminal report published in 2010, examined health inequalities across England and argued reducing these inequalities was both beneficial to society and necessary to achieve social justice.

In 2020, the follow-up Marmot Review 10 Years On report found life expectancy failed to increase for the first time in more than 100 years and that health inequalities had widened overall since 2010. The Covid-19 pandemic has widened this gap by disproportionately impacting groups of people who have been historically disadvantaged. As we learn to live with Covid, we must reflect on the factors that cause inequality, as well as increase our efforts to reduce them.

These efforts must build on the NHS Long Term Plan from 2019 that pledged enhanced action against health inequalities. Our End of Life Care Integrator (EOLCI) team, who provide social investment into EOLC services through the Care and Wellbeing Fund and the Macmillan Fund for End of Life Care, is working to support partner services in addressing health inequalities. This blog discusses the issues we face when considering health inequalities at the end of life.

What exactly are health inequalities?

Health inequalities span the life course. Accordingly, they shape the end of life. Everyone dies, but not everyone will die a dignified death with access to quality care.

The NHS defines health inequalities as ​‘the preventable, unfair and unjust differences in health status between groups, populations or individuals that arise from the unequal distribution of social, environmental and economic conditions within societies’. Health inequalities pervade all aspects of health and social care, from unequal prescription access to differential illness rates across groups of people.

Though we commonly think of health inequalities in terms of race, social class, or gender, these differences take many forms in end of life care. Patients with cancer will be more likely to access advance care planning than non-cancer patients. Young patients might have fewer care options at the end of life than elderly individuals who succumb to age-related conditions.

There is immense variation in what causes an inequality, what the inequality looks like, and how it impacts the end of life. Tackling health inequalities is challenging for three reasons: 

1. Health inequalities are tricky to capture

Measuring and defining health inequalities is an essential first step to addressing them. Inequalities are inherently complex, which makes identifying the appropriate metric challenging. Take the example of ethnicity data, which we have previously discussed. This data is difficult to collect because the categories are confusing, and traditional methods of data collection may not be accessible or inclusive for patients. This results in inaccuracy of recorded ethnic breakdown of patients within a service, making it tough to see which groups need additional support. Robust metrics to capture ethnicity are needed to identify the gaps.

Data collection also presents challenges; how do we go about capturing inequalities data when there is no standard method? Our partners in Hillingdon started to answer this through the Your Life Line service, a new model of care streamlined by a single point of access and rapid response nursing. We collected data, mostly based on referrals, and displayed it on dashboards to monitor the service’s performance. Last year, we began collecting race, gender, and age information. These datapoints show whether the people accessing the service are demographically reflective of Hillingdon’s wider end of life population. This helps us improve the referral pathways to ensure every person has equal access to the service and demonstrates the utility of using digital tools to visualize inequalities. Harnessing the power of digital data is an important next step.

2. Health inequalities vary greatly by geography

Health inequalities look different across the UK. Public Health Scotland reported people in Scotland at the end of life spend on average 17 days in hospital in the last six months of life. However, this figure masks disparity in access to care, making a one-size-fits-all approach to provision inappropriate. Inequalities in urban Edinburgh differ from those in the rural Highlands. For example, given the remote nature of the Highlands, it may be difficult for individuals to access other options, so more individuals die at home or in the community. End of life services there should be grounded within the community. Equally, patients in Edinburgh might have better physical access to services but face other accessibility issues. Nearly one-fifth of residents identify as an ethnic minority in Edinburgh, so services might increase accessibility by catering to different languages, religions, and cultural preferences.

Because of the variability among regions, end of life care services must adapt to the local communities they serve. Such adjustments greatly strengthen care.

3. Inequalities affect every part of the system

Inequalities exist in every corner of the health system and impact multiple stakeholders, from hospices to rapid response teams to caregivers. Inequalities manifest across multiple factors that intersect health, from gender to socioeconomic status. A palliative patient from a low socioeconomic background has a higher risk of dying in hospital than high socioeconomic status individuals. When a person is admitted to hospital many times in their last year of life, and perhaps dies in hospital when it is not their preferred place of care, the consequences are far-reaching. On a personal level, their family might face increased distress. From a system perspective, unplanned admissions into hospital in the patient’s last year have an impact on the overall health service, as there is additional cost incurred.

For some, a hospital may be the preferred place of care; recognition that someone is dying and providing a good end of life care experience in this environment is also key. Inequalities at the end of life are structural, which means they are deeply embedded in our social structures and institutions.

We must consider a different set of questions: Which part of the system should be prioritised? How do we create solutions that address multiple parts of the system? And how do we challenge the structures that have created these inequalities?

Sharing our resources and solutions

In recognition of these issues, we developed a unique approach to reducing health inequalities, through providing social investment with an emphasis on outcomes. As we have previously written, this approach offers more flexibility because the outcomes focus supports development of the right service model for people’s needs. The outcome—and thus the individual—is paramount, so services can be developed around the person. Services can therefore explicitly address the health inequalities faced by patients. The Integrator team works with partner services to develop an operational response that focuses on individuals impacted by health inequalities.

To share our approach to collaborating with health and social care providers to enable system-wide change, we worked with Macmillan Cancer Support to set up a Community of Interest. This Community of Interest provides resources, webinars, and access to the Integrator’s expertise in social investment. If you would like to know more, sign up to the Community of Interest.

For more information on our work in End of Life Care, please contact endoflifecare@socialfinance.org.uk.