CHAIR: Aileen Collier
a. What does it take to keep us connected? A community cultural development project in an acute palliative care setting
Niki Read & Dr Jennifer Wiltshire
The nature of hospital-based health care often means people become disconnected from their families and friends, and clinical referral processes lack supported transitions through diagnosis, curative care, palliative care, death and bereavement. It is our social networks that sustain and accompany us through these experiences and yet health care provision is designed without the patients community in mind. Liverpool Hospital Palliative Care ward and The GroundSwell Project have partnered together for 4 years under an MOU that puts people and their communities at the heart of the ward. The ‘Ward without walls’ project, built on public health palliative care principles, recognises that by getting involved in end of life care in inspiring and life affirming ways people and communities can learn about ageing, chronic disease, dying and death care. The aim is to reduce barriers, build capacity in community and enable palliative care services to be a part of the community, not separate to it. Over 50 people and 15 different local organisations, social groups, cultural facilities, schools and youth councils etc have been invited to contribute to life of the ward through attending informal events, and the sharing of meals. Maps of who and what matters to staff, patients and communities are being created and displayed, and local artists are in residence on the ward to create legacy artworks with patients, all of which highlight that we are all more than our disease, diagnosis or job title and invite contribution and connections between patients, visitors and staff. The insights of this project serve to demonstrate what role beyond clinical care an acute palliative care service might have, providing real life evidence of what works and what the challenges are. This will support other palliative services that may be looking to forge partnerships with communities using community development strategies.
b. Heartache and Healing: holistic approaches to care at a Queensland children’s hospice
As the only Children's Hospice in Queensland, Hummingbird House has provided world class short break stays, symptom management, end of life care, and care after death to well over 200 families across the state since opening in 2015. Within a holistic model of care developed in partnership with local and international practitioners, Hummingbird House offers culturally sensitive support to children, young people, families and their community support networks. This presentation will speak to specific areas of innovation in care from across the spectrum of paediatrics, including a specialist perinatal care pathway for families that receive a palliative care diagnosis prior to birth. The team will also share examples of how the hospice service actively supports a growing number of families who are referred to Hummingbird House after a child or young person has died. This particularly innovative approach to hospice care draws on traditional approaches to family led death care, and draws on a compassionate communities model - situating parents, carers and families as active participants in all aspects of care; crafting rituals and memory making as part of caring for a young person or baby’s body; in preparation for funeral ceremonies, burial and cremation; as well as on into bereavement. In collaboration with families, Hummingbird House has documented a number of case studies which speak to the positive and healing impact of this approach on their ongoing experience of bereavement, and how such community focused approaches to care build capacity in families’ existing networks and circles of care.
c. Theorizing health-promoting nursing practices in EOL care through the capability approach
Background: Nursing care in the end-of-life (EOL) context is frequently criticized for providing a technicized, standardized and individual-oriented approach. By lacking the recognition of individual liberties to act, nursing care often undermines the expression of the dying’s autonomy. With a health-promoting aim, a change is necessary to redefine individual autonomy at the EOL, within a model that recognizes agency. Aim: By postulating the relevance of the Capability Approach (CA) to support this reflection, this presentation aims to propose a renewed conception of nursing practice. Design: Through a case story inspired by an actual nursing practice in an EOL context, a proposal for health-promoting nursing practice, theorized by the CA will be made. The CA developed by Sen and Nussbaum aims to centralize action around the development of opportunities and individual freedoms to enable the person to live the desired life. The CA allows us to represent the professional practice around the mobilization of resources from the individual and the environment. Results: This case story will offer a health-promoting perspective of EOL nursing practice by theorizing care in support of what individuals are able to do and be. This theoretical proposal, by linking the individual, social and environmental dimensions that constitute the practice, puts forward an intersubjective action for the purpose of health promotion. Discussion: Through the crossing of individual, social and normative aspects that CA intends, this proposal offers a new avenue to conceive and guide care around an ideal of "right to health", even in the last moments of life, shaped in what individuals value for themselves.
d. Overcoming barriers in palliative care using expressive arts therapy
Originality: We at Wabi Sabi Health realised that there is a stigma around accessing mental health care and the use of psychosocial services in patients with palliative care needs in India. In particular, the marginalized- woman, children, LGBT, and handicapped- did not have a way to get medical care that was more than pharmaceutical symptom management. We have partnered with two hospitals in India and are training their clinicians to provide medical and psychosocial care, simultaneously using art and music therapy. Contextualised- We are building up compassionate communities by first providing expressive art therapy to the nurse specialists that provide home bedside palliative care. They are participating as well as learning how to use simple methods using expressive arts that can cross barriers and make it less threatening to participate in therapy. Artistic Value- One major strength is that this expressive art therapy integration is lead by doctors, which in India, offers more validity. This model is a powerful tool to connect people to the universality of music and art and use it for the alleviation of pain and other distressing symptoms. India is a country rich in the tradition of art and music. It makes it that much more important to use that for the patients and caregivers that need it the most.