‘Nurses can play a pivotal role in bridging the gap in digital inclusion’

However, as we move towards a more digitally reliant healthcare system, it is crucial to address the issue of digital exclusion and its impact on palliative and end-of-life care. While these digital advancements hold the promise of greater inclusivity, they also pose the risk of replicating or even exacerbating existing exclusions, particularly for those who lack access to or proficiency with digital tools.

“Improving the quality and consistency of digital services is paramount to ensuring inclusivity”

Digital exclusion refers to certain individuals or groups in society who are unable to access the benefits offered by digital technologies. This exclusion amplifies existing health inequalities, affecting areas of the population such as older adults, individuals with disabilities, those in lower income groups, and people living in rural areas, among others (NHS England, no date).

At Hospice UK, we are passionate about making sure everyone gets the end-of-life care they need, when they need it. We are committed to helping the sector expand access to people who are often minoritised or excluded.

The landscape of digital technology in palliative care is still evolving. While some hospices have developed their own digital tools and services, many of which were spurred on by the Covid-19 pandemic, there remains a gap in understanding how digital exclusion may exacerbate the challenges faced by individuals receiving end-of-life care.

Various factors contribute to digital exclusion, including inadequate internet connectivity, lack of accessibility features in digital tools, insufficient digital skills, and a lack of motivation to engage with digital services. For instance, individuals living in remote areas may struggle with poor internet connectivity, while those with disabilities may encounter barriers in accessing digital tools that do not cater to their specific needs (Good Things Foundation, 2024).

Addressing digital exclusion requires a multifaceted approach. We need organisations to prioritise fixing the fundamentals by providing access to devices and data, building digital skills and confidence through education and support, and structuring services around people’s needs and preferences. Moreover, improving the quality and consistency of digital services is paramount to ensuring inclusivity.

The hospice ethos values the whole person and takes account of that individual’s physical, social, emotional, psychological and spiritual needs, while also caring for the other people who are impacted by their illness. It is essential that this ethos is maintained, as more and more services are offered digitally.

Despite the challenges, many hospices and healthcare providers are actively integrating digital services into their care delivery models. These services encompass remote consultations, virtual wards, symptom monitoring, bereavement support, and outreach services for individuals with long-term illnesses.

Nurses, as frontline healthcare professionals, can play a pivotal role in bridging the gap in digital inclusion. By recognising the diverse needs of patients, advocating for inclusive digital solutions, and providing education and support to enhance digital literacy among patients and their families, they can facilitate equitable access to palliative and end-of-life care services.

Recently, we worked with hospice staff and academics to put together a report to help palliative and end-of-life care providers make the most of digital opportunities and ensure no one is excluded when these are implemented (Hospice UK, 2024). We set out recommendations for providers to help make this happen. These include: take time to understand the needs of people at the end of life, carers, staff and volunteers when designing and using digital solutions; encourage collaboration and shared learning between providers; support and invest in people who are passionate about adopting and promoting digital health; invest in the digital skills of staff; and provide online and digital services in appropriate community languages and accessible formats, ensuring that they meet the Accessible Information Standard (Hospice UK, 2024).

Everyone can play a part in expanding digital inclusion. It is more than just a matter of technological advancement, but a fundamental to ensure equitable access to palliative and end-of-life care.

By addressing digital exclusion and embracing inclusive digital solutions, hospices can strive towards providing compassionate and comprehensive care for all individuals, regardless of their digital proficiency or socioeconomic status. And with the support of the wider health and care system, we can make sure people are not digitally excluded at the end of life.

Catherine Hodge is programme development manager, Hospice UK

References

Good Things Foundation (2024) Mitigating risks of digital exclusion in health systems. goodthingsfoundation.org, 30 July (accessed 5 September 2024).

Hospice UK (2024) Digital Health in Palliative and End of Life Care. HUK.

NHS England (no date) What we mean by digital inclusion. digital.nhs.uk (accessed 5 September 2024).