A Call to Advocacy

Categories: Featured, Opinion, and Policy.

For many of us, October is palliative care awareness month, with two global campaigns taking place. Firstly, ‘Hats On For Children’s Palliative Care’ (#HatsOn4CPC) which was held on Friday 13th October, and then World Hospice and Palliative Care Day on Saturday 14th October. Both campaigns are aimed at raising awareness about palliative care globally, drawing attention to the need for and impact that palliative care has. Alongside this, Baby Loss Awareness Week was held in the UK from the 9th to 15th October—so a busy month in terms of advocacy.

This year #HatsOn4CPC celebrated its tenth anniversary—10 years of asking people to raise awareness by ‘putting on a hat for children’s palliative care’. Over the 10 years that this campaign has been running, there has been progress in the development of children’s palliative care. However, there is still a long way to go, if we are to achieve the best possible care and support for every child in the world with a life-limiting illness (International Children’s Palliative Care Network (ICPCN), 2023). Everyone is asked to wear a hat to raise awareness of the 21 million children globally who need access to palliative care (Connor et al, 2017), with less than 10% of those 21 million able to access care for themselves and their families (Downing et al, 2017). Where services do exist, many in low-and middle-income settings are underfunded and inadequate to meet the overwhelmingneed (Downing et al, 2015). As a result, millions of children have a poor quality of life and suffer from physical, emotional, psychological and spiritual pain and other distressing symptoms that could be significantly improved through quality palliative care services.

World Hospice and Palliative Care Day is an annual unified day of action to celebrate and support hospice and palliative care around the world and has been marked every year for the last 19 years to advocate for better palliative care services globally. This year’s theme is ‘Compassionate communities: together for palliative care’ with the acknowledgement that compassionate communities care for people, assist people to live in the place they call home, connect people to services and raise awareness about end-of-life issues (Worldwide Hospice Palliative Care Alliance (WHPCA), 2023). A wide range of compassionate communities for palliative care have been developed around the world (Abel, 2018; Kellehear, 2020) and the integration of palliative care within compassionate communities can help respond to the needs of the most vulnerable around the world.

Baby Loss Awareness Week (BLAW) is dedicated to breaking the silence surrounding pregnancy and infant loss, enabling individuals and organisations to come together, share stories and promote understanding and compassion for those who have experienced the loss of a baby. Now in its 21st year, Baby Loss Awareness Week also calls for tangible improvements in research, care and policy, and although it is aimed primarily at the UK, this is an important issue worldwide (BLAW, 2023).

With all of this advocacy taking place over the past 10 to 20 years, one might ask, why is palliative care still not available to all in need around the world, regardless of age, gender, nationality, and where they live? In the last few editorials of this journal, we have touched upon many issues that are relevant: for example, the fact that access to palliative care is a human right (Nyatanga, 2023), the need for grief support for parents (Biagioli, 2023), and the need for nurse leaders to promote and advocate for palliative care (Ling, 2023). There are numerous advocacy programmes and campaigns: the global work of the International Children’s Palliative Care Network (ICPCN), the Worldwide Hospice and Palliative Care Alliance (WHPCA), the International Association of Hospice and Palliative Care (IAHPC), and their joint campaigns and advocacy highlighted through the Berlin declaration.

Likewise, the work of Palliative Care in Humanitarian Aid Situations and Emergencies (PallCHASE), the newly formed Global Palliative Nursing Network (GPNN) and the regional and national palliative care organisations and champions.

So why, with all this going on, are we still not reaching those in need? Why are there millions of children and adults around the world suffering needlessly? We know how to provide palliative care in a range of settings, including high-income settings, low- and middle-income settings, humanitarian-settings, within the hospitals, at home and in other settings. We know the importance of education, of research, of access to medicines, of integration of services, of empowering individuals and communities (World Health Organization (WHO) Conceptual
model for Palliative Care Development, 2021). Yet there is still an ongoing need for advocacy globally, regionally and nationally for access to palliative care. Our challenge, therefore, as nurses is to make sure that we are knowledgeable, and able to communicate to the WHO and other bilateral organisations, to governments and policy makers, to health managers and administrators, to other health and social care professionals, and importantly, to the families and communities that we care for. While this is a challenge, as nurses we are equipped to and skilled at communicating with a range of individuals and organisations—we are good at advocating for our patients at the clinical level, so lets use those transferable skills as we continue to advocate for palliative care services for all in need, to ensure that no child or adult suffers needlessly due to the lack of access to palliative care.

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