These ‘Hidden Patients’ may face additional barriers to accessing care due to disability, geographical location, refugee status, sexual orientation or age. Specific diseases such as dementia or HIV/AIDS may also complicate access to care.
Children are one group that are regularly neglected and ‘hidden’ from palliative care services. Joan Marston, CEO of the International Children’s Palliative Care Network constantly reminds us: “Don’t forget the children!” as laws and policies written with adult palliative care in mind unintentionally, but devastatingly ‘hide’ children and their very special palliative care needs.
The World Hospice and Palliative Care Day website is overflowing with notices of events held all over the world to mark the Day.
Even the virtual world got involved, with Tweetchats under the hashtags #hpmglobal and #PallANZ debating the problems faced by ‘hidden patients’ and sharing ideas on how to address the barriers they face in accessing palliative care.
The Economist Intelligence Unit Quality of Death Index was released just ahead of world day, ranking each country in terms of the availability and quality of palliative care there.
There was also good coverage of palliative care on the WHO website in the lead up to World Day, including the release of an infographic detailing the barriers to palliative care availability worldwide, and the role of UN Member States in implementing the WHA resolution on palliative care.
This huge show of support is encouraging, but it is vital to keep the momentum going. Raising awareness of ‘hidden patients’ is all very well, but if we don’t KEEP REMEMBERING after World Day is over, then they will be doubly hidden.
Liz Gwyther, Chair of the Worldwide Hospice Palliative Care Alliance, said: “Thank-you to all the people around the world who hosted events for World Hospice and Palliative Care Day this weekend. Even though World Day is over, we must make sure that we continue to remember the Hidden Patients and their palliative care needs.
“It is encouraging to see so many World Day events taking place in communities world wide. It is so important that people get to hear about palliative care and know that they have a right to be pain free and have a good quality of life until the end of their lives.
“It was also good to watch the ICPCN’s Hats On for Children’s Palliative Care campaign which took place a week before World Day. This was a fun and catchy way to raise awareness of the more than 20 million children globally who would benefit from palliative care.”
Joan Marston said: “Palliative care recognises the uniqueness of each child and allows their personal story to be told and their voice to be heard, respected and acknowledged. It makes the invisible, visible. We still have so much to do for each of these vulnerable babies, children and young people living and dying with life-limiting conditions. As the ICPCN, a compassionate global response to the suffering of children and families, we are passionately committed to making a better world for those children we seek to serve”
So how do we keep remembering hidden patients with hidden lives? Just do it. In your practice, or office or daily life, remember the people who might otherwise be forgotten. Ask yourself: am I helping this person to access appropriate care, or am I unintentionally sweeping them under the rug, rendering them hidden once again?
Find out more about World Hospice and Palliative Care Day online.