Hidden Lives/Hidden Patients is the theme of this year’s World Hospice and Palliative Care Day. But just who are the hidden patients, and why are so many marginalised people not accessing palliative care? Dr Liz Gwyther, Chair of the Worldwide Hospice Palliative Care Alliance (WHPCA), which organises the event, explains and urges you all to get involved on 10 October…
World Hospice and Palliative Care Day is a day of action and awareness to celebrate and support hospice and palliative care around the world. It is organised annually on the second Saturday in October by the Worldwide Hospice Palliative Care Alliance (WHPCA). The WHPCA has a five-year strategy involving each World Day leading up to the 2017 theme of: ‘Universal Access to Palliative Care’.
This strategy started in 2013 with the theme: ‘Dispelling the Myths’, aiming to debunk misconceptions about hospice and palliative care by providing facts to explain this care. The 2014 theme of: ‘Who Cares? We do’ explored which staff, family and volunteers provide care. It also challenged people to consider whether they care about hospice and palliative care and the people requiring this service.
The question still applies as evidenced by the fact that palliative care is integrated into healthcare systems in only 20 of 234 (8.5%) countries worldwide. Approximately 80% of the world’s population lacks access to essential palliative care medication. Who cares about this limited access to palliative care?
Who are the hidden patients?
The theme for World Day 2015 is: ‘Hidden Lives / Hidden Patients’, intending to create awareness about people who find it particularly difficult to access palliative care. This year, WHPCA welcomes the International Children’s Palliative Care Network (ICPCN) as a partner in organising World Day, the theme of which is so relevant to children, who are all too often ‘Hidden Patients’.
ICPCN estimates that more than 20 million children globally would benefit from palliative care. Access to palliative care may be challenging for children as people are not fully aware of the role of palliative care in caring for children with chronic disorders, thinking of palliative care as only end-of-life care. There is still a misperception that starting palliative care is a ‘giving up’ on the patient, not recognising the comprehensive care provided through palliative care.
The ‘Hidden Lives Hidden patients’ theme also highlights other marginalised people who do not access palliative care. People with disabilities could benefit from palliative care with care and support to enable active living with the disability, and the provision of end-of-life care if needed.
People living with HIV have many challenges, from the time of diagnosis and adjusting to this new reality, to managing symptoms of the illness, while anti-retroviral treatment restores physical health to realise healthy living with HIV. Palliative care services also assist in adherence to the medication that has made such a difference to people infected with HIV.
The lesbian, gay, bisexual, and transgender (LGBT) community still faces discrimination in everyday life in many communities and this includes access to health services. The WHPCA protests that many countries criminalise homosexuality and takes the opportunity of World Day to highlight this abuse of human rights and to advocate for abolishing laws that criminalise homosexuality.
Palliative care may be difficult to access for people living in rural areas and national hospice palliative care associations are working to improve this access. The World Health Organization resolution: ‘Strengthening of palliative care as a component of comprehensive care throughout the life course’ urges governments to ensure the training of all healthcare workers in palliative care.
A group of concerned palliative care leaders have established a network for Palliative Care in Complex Humanitarian Emergencies (PALCHE) to help people requiring palliative care when affected by emergency situations such as war or natural disaster.
People in prisons may also be ‘Hidden Patients’ although many countries are developing palliative care programmes to train prison medical staff and inmates in palliative care.
In working towards the 2017 theme of Universal Access to Palliative Care, we have a synergy with the United Nations Sustainable Development Goals (SDGs) inclusion of Universal Health Care as an SDG. Universal Health Coverage is defined as ensuring that all people can use the promotive, preventive, curative, rehabilitative and palliative health services they need, which are of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.
Coming up on the EAPC Blog…
We shall be publishing more stories about this year’s World Hospice and Palliative Care Day in the next few days and weeks.