a. Opening the door: Equipping and empowering healthcare professionals to engage young people in gold standard end of life communication
Ursula M. Sansom-Daly (speaking) 1,2,3; Claire E. Wakefield 1,2; Richard Cohn 1,2; Afaf Girgis 4; Antoinette Anazodo 2,3; Pandora Patterson 5,6; Anne-Sophie Darlington 7; Hanneke Poort 8; Abby Rosenberg 9,10,11; Meaghann Weaver 12; Jennifer Mack 13; Joan Haase 14,15; Celeste Phillips-Salimi 14; Karen Wernli 16; Ruwanthie Fernando 17; Leigh Donovan 1,2,18; Susan Trethewie 19; Anthony Herbert 18,20; Douglas Fair 21; Anne Kirchhoff 21,22; Toni Lindsay 23; Fiona Schulte 24,25; Pamela Mosher 26; Ahmed Al-Awamer 27,28; Louise Sue 29; Holly Evans 1,2; Lori Wiener 30
1. Behavioural Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia.
2. School of Women’s and Children’s Health, The University of New South Wales (UNSW) Sydney, Randwick, NSW, Australia.
3. Sydney Youth Cancer Service, Prince of Wales/Sydney Children’s Hospital, High Street, Randwick NSW, Australia.
4. Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research, UNSW Sydney, NSW, Australia.
5. Research, Evaluation and Social Policy Unit, CanTeen Australia, Sydney, NSW, Australia.
6. Cancer Nursing Research Unit, Sydney Nursing School, The University of Sydney, Sydney, NSW, Australia.
7. School of Health Sciences, University of Southampton, UK.
8. Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, USA.
9. Palliative Care and Resilience Research, Seattle Children’s Research Institute, USA.
10. Adolescent and Young Adult Oncology, Cancer and Blood Disorders Center, Seattle Children’s Hospital, USA.
11. Division of Hematology-Oncology & Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, USA
12. Divisions of Palliative Care & Pediatric Hematology/Oncology, University of Nebraska Medical Center, USA.
13. Population Sciences for Pediatric Hematology/Oncology, Dana-Farber Cancer Institute, USA.
14. School of Nursing, Indiana University, USA.
15. The RESPECT Signature Center at IUPUI, USA.
16. Kaiser Permanente Washington Health Research Institute, USA.
17. Palliative Care Service, Liverpool Cancer Therapy Centre, Liverpool Hospital, NSW, Australia.
18. Lady Cilento Children’s Hospital, Australia.
19. Sydney Children’s Hospital, Australia.
20. Children’s Health Queensland Clinical Unit, Faculty of Medicine, University of Queensland, Australia.
21. Division of Pediatric Hematology/Oncology, Department of Pediatrics, School of Medicine, University of Utah, USA.
22. Cancer Control and Population Sciences, Huntsman Cancer Institute, USA.
23. Chris O’Brien Lifehouse Cancer Centre, Australia.
24. Division of Psychosocial Oncology, Department of Oncology, Cumming School of Medicine, University of Calgary, Canada.
25. Hematology, Oncology and Transplant Program, Alberta Children’s Hospital, Canada.
26. Hospital for Sick Children, Toronto, Canada.
27. Department of Family and Community Medicine, University of Toronto, Canada.
28. Princess Margaret Cancer Center, Toronto, Canada.
29. Adolescent and Young Adult Cancer Services Team, Canterbury District Health Board, Christchurch, New Zealand.
30. Psychosocial Support and Research Program, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, USA.
Despite medical advances, many adolescents and young adults (AYAs) with cancer do not survive. Timely, developmentally-appropriate end-of-life (EoL) discussions are critical, and are the recommended standard-of-care. However, many healthcare professionals do not feel prepared or confident to lead these conversations, and little training is available internationally to meet their needs. Understanding and addressing these barriers is a critical next step. This multi-perspective study aimed to: i) examine perceived barriers/facilitators to gold-standard EoL communication in Australia, and ii) benchmark current EoL communication practices with AYAs with cancer internationally, against the recommended standard-of-care.
In Stage 1, we undertook semi-structured interviews with multidisciplinary Australian healthcare professionals, exploring perceived barriers/facilitators to EoL communication, and preferences for improving current practice locally, including implementing advance care planning. Stage 2 employed an online survey of healthcare professionals recruited from several international organisations to map current EoL communication practices against recommended standards.
Twenty-eight Australian healthcare professionals participated (Stage 1). Professionals’ most commonly-endorsed barrier to EoL communication was their own ‘readiness’ (44%), while 29% endorsed good rapport as a facilitator. Professionals felt relapse was the most appropriate time to introduce EoL discussions (40%). Reflecting a whole-of-team approach, professionals were equally likely to suggest that either psychosocial staff (55%) or ‘whoever has the best patient rapport’ (52%) lead the introduction of EoL/palliative care concepts.
Data collection from the Stage 2 survey is underway. Survey findings, as well as next steps for the global collaboration, will be presented at the conference.
Conclusions and application to PHPC
Healthcare professionals need adequate support to deliver gold-standard EoL communication with young people. By benchmarking current international EoL communication practices , and identifying barriers to best-practice, this study will directly contribute to developing sustainable clinician-training resources. These efforts will underpin the dissemination of gold-standard EoL care for all AYAs with life-limiting illnesses.
b. Engaging young adults in hospice care: How to expand community involvement and increase diversity in volunteerism?
Dr. Patrick Schuchter MPH, University of Graz, Austria
(speaking) Assoc. Prof. Dr. Klaus Wegleitner, University of Graz, Austria
Bernadette Groebe MA, Malteser Hilfsdienst e.V., Cologne, Germany
Dirk Bluemke, Malteser Hilfsdienst e.V., Cologne, Germany
In western societies, hospice volunteers have a key role in end-of-life care (EOLC). However, this is, roughly speaking, still a phenomenon of mainly middle-class, retired women. In order to strengthen community engagement and to increase death literacy, hospice care organizations have to promote novel roles of community involvement in EOLC. How to involve young people seems to be a special challenge in this.
A large hospice care provider in Germany started a perennial project, which aims to involve young adults in a number of ways in hospice care.
The project started with two qualitative surveys a) among young adults engaged in voluntary hospice work (18-30 years old / n=23 / average = 26,3 years / 23% male, 77% female), and b) of 39 partner organizations. In a participatory process, this survey serves as impulse to establish 11 local projects (partnerships with schools, businesses, universities, etc.). Interactive forums and diverse types of workshops interconnect young adults, services, communities and (hospice)policies perspectives.
The main motivations of young adults to engage in hospice care are a) to collect and to reflect meaningful life experiences and b) the feeling to make a difference in the life of others with relatively little effort. According to the stage of the lives of young adults, hospice services need to offer new and flexible forms of volunteering as well as opportunities to integrate volunteering into education and personal careers of young adults.
In order to strengthen involvement of young people in EOLC and to foster the diversity in community engagement, manifold new ways of partnerships with the education system should be established. Young people can contribute as “ambassadors” of the hospice philosophy in society and in local communities.
c. Rap Rhythm and Rhyme: The cadence of compassionate youth
Ms Vanessa Eldridge, Manager Day Services, Mary Potter Hospice, Aotearoa.
The ‘Coolest Little Capital in the World,’ Wellington has more café outlets per capita than New York. In 2017 Wellington was rated the best place to live on the planet, by Deutsche Bank. In the same year, it was voted one of National Geographic’s top food cities and, most importantly, the Lonely Planet’s best city to drink beer in. It is a vibrant backdrop for University students and creative young people.
Compassionate Communities work in the city is still in fledgling stages and a more formal ‘coalition of the willing’ is yet to be formed for the region. Mary Potter Hospice has created several innovative community programmes such as ‘Lining Up Your Ducks’, ‘Living Solo’ and ‘Healing Through Storytelling’.
The newest most creative event for 2019 was a loud one. Local rappers and poets gathered to share about loss grief and compassion. Performers were mainly of Māori and Pasifika background. It was an ideal collaboration for youth supported by the public, Victoria University, Wellington’s creative community and New Zealand’s first Hospice.
Vanessa Eldridge (Ngāti Kahungunu and Rongomaiwahine) will share footage of the event and her experience of working with youth and university students. Their vibrant voices will not be forgotten. Vanessa discovered the joy of working with people who make decisions on the spot, mobilise groups quickly, proceed at a roaring pace and can promote the living daylights out of anything.
This is the essence and heart of the compassionate community approach – fostering networks that empower communities and are motivated by compassion and innovation.
d. Preparing children for a parental death
Dr. Gillian Murphy, Western Sydney University, (speaking)
Associate Professor Kath Peters, Western Sydney University,
Professor Debra Jackson, University Technology Sydney,
Professor Lesley Wilkes, Western Sydney University.
Preparing children for parental death.
Palliative care services provide specialist care and support for people experiencing life limiting conditions. The services focus on flexible and patient-centred care, such as: pain management (NSW Health, 2018) and promoting spiritual well-being (Kwan et al., 2019). Supporting carers and families of people using palliative care services is critical, yet there are calls for more family and carer support initiatives (Chung et al., 2019). Additionally, there is a paucity of data about the parental status of people accessing palliative care, particularly those with children under 18 years old. Given this, it is difficult to estimate how many children will experience anticipated parental death, where there is a period of time when a parent is expected to die.
This paper will present findings of a study with adults who experienced the death of a parent during childhood.
A narrative design was used for the study. Themes and sub-themes were established from the data.
Adults who experienced childhood parental death did not receive sufficient information about their parents’ illness and prognosis, even when there was a period of parental anticipated death. Participants felt unprepared, confused and isolated when their parent died. Participants reflected that they felt compelled to seek out information about their parent and their death. Several participants made active efforts to source additional information about the life and death of their parent.
Palliative care specialists have a unique role to prepare and support children when the death of their parent is anticipated. Yet there are some important considerations when engaging with parents and children regarding parental death. These include involvement of the parent who is expected to die and the surviving parent, the method and content of anticipated death messaging, making and sustaining memories, and saying goodbye.
Chung, A., Colier, A. & Gott, M. (2019). Community-led and / or focused initiatives to support family carers within a palliative care context: An integrative review. Palliative Medicine, 33(2), 250 – 256.
Kwan, C., Chan, C. & Choi, K. (2019). The effectiveness of a nurse-led short term life review intervention in enhancing the spiritual and psychological well-being of people receiving palliative care: mixed method study. International Journal of Nursing Studies, 91, 134-143. Doi: 10.1016/j.ijnurstu.2018.12.007
NSW Health. (2018). Palliative care survey. Retrieved from https://www.health.nsw.gov.au/palliativecare/Publications/survey-report.pdf