Chair: Rachel Bilton-Simek
a. Straddling the last breath: A reflection of music therapy as an element of change, connection and compassion
Music therapy is poised as an innovative allied health profession that offers potential for change and connection. It can shape our experiences as fragile creatures subject to loss, suffering and death, while facilitating connections in deep and meaningful ways where words are insufficient. Death is an experience that is universal, that touches all members of a family. There is both commonality and individuality in the grief experience, and each person reacts differently. A child's death however, is such a devastating loss that exacts an emotional and physical toll on parents, siblings and entire family dynamics.
Using a narrative reflection and case examples this presentation will explore how music and music therapy is able to support the changing connection between the dying and the surviving during the transition between life and death, in a paediatric setting.
Zooming in on the hours immediately before and after end of life, we examine music therapy and its capacity to create compassionate spaces immediately after the death of a child in a paediatric hospital. Detailed process and observations will be described, exploring the scope of practice for music therapists in area.
Conclusion / application to PHPC:
Music is capable of affecting spiritual aspects with emotional needs in health care where medical intervention cannot, and can contribute to the ‘wholeness’ perception of a person. Music therapy approaching, and at end of life is not new, neither is accessing music therapy to support loss and suffering. Music therapy can be pivotal in bringing comfort, resolution and spirituality, while providing a compassionate space as families navigate changing interpersonal connection after death of a loved one.
b. Where heart meets design
All authors: Ms Kerry Dmytrenko, General Manager, Anam Cara House Geelong
Ms Elizabeth Grigg, Principal, Tectura Architects
Mr Serdar Baycan, Director, Tectura Architects
Presenting author: Kerry Dmytrenko
ACHG is a community hospice, providing day and overnight palliative respite and end of life care in a home like environment, staffed by skilled nurses and palliative trained volunteers.
Currently operating as a small service from a historic home we are in the midst of a new service and capital development initiative that is expanding our operations to a 20 bed overnight service plus day hospice and community hub with partnerships in education and community. The new service is located on 2 hectares of open land within the grounds of Deakin University, Waurn Ponds.
The challenge for our architects is to design a home-like, family friendly, human scale experience for guests while meeting acute hospital standards, including infection prevention and OH&S considerations.
Following an extensive period to review the proposed model of care and service delivery, plus briefing of the architects, a number of broad planning design parameters were developed.
Design parameters include separating the residential areas from day areas, with day services providing community, resources and therapeutic services; residential areas are grouped to increase privacy, with a series of intimate spaces and small group spaces for sharing food; a larger communal library is accessible for residential and day guests; and the overall design maximises natural light and horizon views to the natural landscape.
Extensive gardens are designed with a journey in mind and include an indigenous cultural garden as well as natives and exotic species familiar to home gardens.
We are confident we will have a gracious, homelike building that affords opportunities for smaller or larger family groups in a range of indoor and outdoor settings, that meet privacy, comfort and health care standards. Our design process demonstrates the benefits of taking time to reflect and review the model of care and briefing with your architect in detail.
c. Making a place for joy: How design can make people happy (or not)
Connecting with the conference’s themes, this oral presentation aims to discuss the practical relationship between a provider’s philosophy of care and the design of the built environment for the people they serve. We draw directly from our own experience in the design of residential ‘high care’ facilities as case studies; but with wider implications for other care settings.
How will our elders live in future? How do we design to provide for dignity, choice and happiness as we get older? How does that correspond to clinical and allied care services to support that?
Fundamentally, where is aged care design going? What will we be building in ten years?
With a play on words, we address the fact that Joy is an essential emotional aspect of healthy existence, but also a real person with her own history. We go on to try and quantify the elements of joy.
We touch on the design problems posed by loss of agency, depression and dementia. While service models are well intentioned, in practical terms they often manifest as risk-averse and quietly patronising attitudes.
In supporting Joy, we expand on three fundamental ideas worth fighting for, we’ve labelled-
• the blurry edge
• home not hospital
• choice and ‘dignity of risk’
We conclude by tying the building and service design themes together, considering environmental design as a possible threat of restraint, or a facilitator of dignity and choice.
d. Compassion and care through co-design
All authors: Ms Sarah Kaur, COO, Portable
Mr Joe Sciglitano, Design Lead, Portable
Ms Bonnie Graham, Design Strategist, Portable
Presenting author: Simon Goodrich
Portable is a design and technology company that makes change in areas of social need and policy failure. We have recently released a research report into the future of death and ageing in Australia, and we're bringing our human-first approach to this integral social issue.
Co-design, a participatory approach to solving complex social problems, brings together people from the entire ecosystem surrounding an issue or topic. In the spaces of public health and palliative care, this often means putting the recipients of services on the same platform as academics, practitioners and service providers — ensuring that their voice is integral in the design of any solution. Through collaborative activities, solutions can be designed with empathy, which is key to creating lasting, effective outcomes.
Portable has spent years honing the unique set of tools and and methodologies that allow us to practice successful co-design, and are well-placed to invigorate and inspire the primary health and palliative care industry.
In this talk, attendees will learn the value of co-design with real examples from Portable’s research in the death, dying and mental health spaces (including some mistakes we’ve made and learned from along the way) and walk away with a new set of human-centred design tools that will help them bridge the gap between academia, service delivery and those who are affected by end of life.