In recognition of World Hospice and Palliative Care day and this year’s theme “Compassionate Communities: Together for Palliative Care,” we shine a spotlight on Voices for Palliative Care.
Voices is a remarkable community of individuals with lived experience in serious illness and palliative care, working in partnership with palliative care researchers to ensure that the patient and carer voice is heard and valued. Voices is committed to fostering meaningful collaboration in research activities, contributing to service planning and delivery, and community-driven advocacy.
A core component of palliative care is not only support and care for the person living with the serious illness, but also for those around this person- their family and their community. Moreover, much of care for people with serious illness is undertaken by families, particularly as people move closer to death. Therefore, ensuring palliative care addresses the needs of both patients and their carers is essential. Research which seeks to improve experiences of palliative care must be informed by and undertaken in collaboration with those care recipients (and providers).
Elevating the voices of consumers in research
By fostering a collaborative environment between researchers and consumers, Voices elevates the voices of consumers in research, ensuring that research aims have relevance and utility for the patient and carer community.
"A carer or a relative has only one chance to accompany their loved one through palliative care and end-of-life care. When we empower them to have a voice in negotiating for the very best in care, we help them to become partners in this palliative care journey with the clinicians and carers who accompany them. Rather than feeling helpless and swept along with the necessary treatments, moving through an unfamiliar medical minefield, they can learn to take control, influence decisions, ensure that the values of their loved one are brought to the forefront and respected, and they can come through this traumatic time with the knowledge, after their loved one's death, that they 'did it well'. The benefits for a carer/relative's mental health following an end-of-life journey which has been compassionately managed through clinician/consumer teamwork are very significant."
Imelda Gilmore (Voices for Palliative Care Member)
Voices for Palliative Care was established in 2022 and is facilitated by the Palliative Care Research Network (PCRN), a collaborative network of researchers working in palliative care.
Consumer-led from inception, the group’s eleven members meet regularly to discuss strategies for improving patient and public involvement in palliative care. One of the driving forces behind Voices is a desire to raise awareness about what palliative care actually is and the benefits of accessing quality palliative care earlier in a person’s illness journey. Through research collaborations and community engagement, they aim to demystify palliative care and emphasize the importance of holistic and compassionate end-of-life care.
“My belief is that increasing death literacy and involving communities in care of the dying will reduce the fear and stigma associated with palliative care and go a long way towards achieving access and equity for those needing palliative care.”
Christine Hofmeyer (Voices for Palliative Care Member and Co-chair)
On World Hospice and Palliative Care Day, we are reminded that compassionate communities are the beating heart of quality palliative care.
Voices serves as an inspiring example of how collective effort, empathy, and shared experiences can pave the way for a brighter, more compassionate future in palliative care.
Getting in touch with Voices
Researchers can choose to work with individual Voices members based on their expertise and experience or engage with the entire group for a more global perspective.
For more information on the program, visit the PCRN website or email Mollie Wilson via email@example.com.
To find out more about World Hospice and Palliative Care Day, visit the WHPCA website.
PCRN WebsiteWHPCA Website