Ms Jan Mcgregor1, Ms Catherine Ooi
1Pure Land of Amitabha Buddha Hospice Inc, Torrens Park, Australia
Biography:
Jan McGregor co-founded Pure Land Home Hospice, an Adelaide-based charity providing free generalist palliative care for people wanting to stay at home, or to stay at home as long as possible, until their deaths. Although the Hospice is underpinned by Buddhist values, it serves people of all spiritual beliefs and traditions.
As a registered nurse Jan works to support people with life-limiting conditions to live well and to die free of fear and pain. She is determined to nurture and grow a community of caring and compassionate people who work towards demystifying and normalising the stages of living and dying.
Abstract:
Background:
A community-based palliative care (CBPC) hospice based in Adelaide serves long-term and seriously ill individuals in their homes by integrating care for symptom and psychosocial relief with local healthcare systems.
Aims:
As a generalist home hospice with a strong focus on fulfilling holistic needs, we present a narrative experience of our patient C, a 64-year-old LGBTQ+ patient with Multiple System Atrophy (MSA) and organ failure. As a psychiatrist, C is very familiar with established health care systems and has found the concept of home care hospices ‘by the community, for the community’ particularly relevant and valuable to him. This narrative highlights C’s views on the strengths and importance of community-based care, which aligns with Standard 7 of the National Palliative Care Standards (NPCS) to hold the wishes, dignity, and well-being of palliative care patients at its core.
Method:
As a generalist service, our dominant focus is ensuring that C receives the range of specialist care he requires, as well as providing practical suggestions for symptom management, wish fulfillment, and psychosocial and existential conversations around his mental and existential well-being. We utilise a community-led, interdisciplinary approach for providing generalist palliative care services, of which one key component is the deployment of volunteer-led psychosocial and spiritual care services that enable us to access diverse populations in their homes and establish high levels of intimacy and trust. We recorded interviews with C describing his feelings and experiences with home hospice as a LGBTQ+ person, as well as through the lens of being a health care practitioner facing death.
Results/Conclusion:
CBPC hospices are usually small and diverse in practice. But they have the potential to be highly flexible and person-centred in meeting diverse needs and augmenting specialised care, thereby enabling better overall palliative care outcomes for those living and dying in the community.