The impact of COVID-19 on different communities serves as a useful reminder of why palliative care service providers should do everything in their power and resources to ensure equity of access to all who need it. Evidence of the devastating effects of COVID-19 is well documented, particularly in relation to the exposure of socioeconomic disparities among people from black, Asian and minority ethnic (BAME) communities and other disadvantaged groups. Lessons learned from the pandemic should act as a catalyst to reaffirm our belief and commitment that palliative care is important to all those facing the end of life. Such a commitment means that everyone in healthcare services has a duty to facilitate assessment and access to palliative care by those who need it, regardless of their socioeconomic status, background, age, gender identity and other protected characteristics, which often end up being used to divide people and deprive them of critical services.
Meeting the need
While this column is written for UK community nurses, issues of inequity are a global problem (Reimer-Kirkham et al, 2016; Hunt et al, 2019); therefore, we should look for a global solution, working with other palliative care partners in both developed and developing countries, acute and community healthcare services. Reimer-Kirkham et al (2016) argue that palliative care services are not responsive to the needs of those who are doubly vulnerable—that is, those in desperate need of palliative care while also experiencing social disharmony. It can be argued that, with the COVID-19 pandemic, such discrepancies are now compounded; therefore, greater effort is necessary to rectify this and improve equity for all. Indeed, the COVID-19 pandemic has challenged the fundamental principles of palliative care, which emphasise the uniqueness of each death, thereby delivering care at an individual level. The pandemic has also challenged the support and involvement of families and close friends in care provision, due to distancing requirements and the necessity of wearing personal protective equipment (PPE). These challenges are clearly disruptive to the ethos of palliative care and can also inadvertently create depersonalised care among dying people, particularly those with minimal socioeconomic and political power, including those in the BAME and LGBTQI+ communities, sex workers and the homeless (Hunt et al, 2019). A study by McNeil et al (2012) found that certain institutional policies in Canada presented barriers for homeless people accessing palliative care services, which should be facilitative.
A global view
Qualitative research by Hunt et al (2019), conducted through the interviewing of 60 adults and 12 healthcare professionals in Zimbabwe, highlights evidence of discrimination against LGBTQI+ populations in accessing palliative care services. People from these communities, alongside facing discrimination for their sexual and gender identities, will also often experience poverty and homelessness, creating a potential triple stigmatisation that may easily result in exclusion from palliative care. The study by Hunt et al (2019) found that discrimination of sexual minorities was based on widespread rejection of homosexuality in most African, highly religious countries, with some countries enshrining this in law. It can be argued that other developed countries may not overtly take such legal positions, but may subtly and covertly discriminate against these same populations, alongside other marginalised groups. The point for those involved in palliative care is to ensure that we focus on providing our services in an equitable way, regardless of societal, governmental or legal discrimination. For example, we should continually remind ourselves that access to palliative care should not be a lottery, but a right for everyone who needs it. Institutional palliative care policies should be written in a way that facilitates access to services by all.
As community nurses in the UK, a lesson for us is to continue the recognition of palliative care needs for everyone through assessment and access to our care. It is important to acknowledge that some communities are disproportionately affected by the COVID-19 pandemic, and we need to double our efforts to ensure they have fair access to palliative care services. There are times when we need to review the notion of ‘doing things right’ (policy-orientated) in favour of ‘doing the right things’ (people-orientated), so that grassroots change can occur. As community nurses, we have firsthand insight into the issues and concerns of patients and their loved ones; therefore, we occupy a privileged position as their advocates, and must make our voices heard to ensure our patients can access the care and support they desperately need. Of course, in many cases, we are not able to prevent or delay death; however, we can play an important part in making our patients' end of life pain-free and bearable for the dying and those who matter to them.