ABSTRACT 

After my daughter died, I had two very strong, almost innate urges. The first was I wanted her to be remembered. She is my baby and she is loved. Secondly, I wanted to help other families get the same care for their own child. How could I, a bereaved mother make any difference? I’m not an expert, truth be told I felt so broken how could I help anyone? After my daughters first anniversary these urges started to ramp up and I started to look at ways that I could help fulfil these unmet needs. 

 

It all started when I connected with the Neonatal Unit where my child had lived most of her little life. A Neonatologist and research nurse provided me an opportunity that I embraced with my whole heart and it has truly changed my life. Over the last eleven years I have been part of hospital advisory groups, contributing to policies, procedures and development of resources. I have worked in universities helping shape curriculum and guest lecture.

 

I have been the parent lead and consumer representative for multiple research projects and initiatives. Some of this research has made considerable changes in Neonatal units fostering high quality care, dedication to continuous improvements, education and support for staff. I have lobbied Ministers, run workshops for health professionals, raised funds and provided peer support to other families. 

 

Although my daughter is still gone, I feel so proud of her legacy. Her story has helped to drive positive change and given me purpose and to realise I am not broken. I would be privileged to share with you strategies and ways that you can recruit and utilise consumer voices in your own settings and projects.


Twitter:
Neonatal and Paediatric Palliative care are not the same as adult care. They need their own spotlight in the health system and community. Babies and children become sick or severely injured or are born with life limiting conditions. They need palliative care. They will die. Babies and children die every single day. This is not an easy sentence to read. It’s uncomfortable, its hard. What is more uncomfortable is being told your child has a life limiting or terminal condition. Trying to squeeze a lifetime of love, memories, hugs, kisses and lullabies into an unknown time frame and holding your child in your arms as they take their last breath. Palliative care embraces the whole family and is led by the child, it provides comfort and light in the darkest of times. Palliative care families are not broken, we are warriors for our children. We love them with a fierceness that comes deep from your bones. We want you ask their name, we want to share our child’s story and yell from the roof tops that they matter. So reach out! Talk to your palliative care friends. Professionals ask us to participate in research and projects. We are their voice, please give us this.

Introduction:

The Adolescent and Young Adult Hospice (AYAH) is a new NSW wide service that opened in February 2023 in Sydney. It has 8 beds for patients aged 16-25 years with life-limiting illnesses. Admissions are accepted for respite care, complex symptoms, acute hospital step-down, end-of-life care and after death care. This abstract and presentation describes some of the unique elements in the setting up of the AYAH.

Service planning:

The AYAH was developed due to community engagement and advocacy, primarily to meet the ongoing needs of patients who had been cared for in Bear Cottage – a children’s hospice in close proximity in Sydney, as well as adolescents and young adults with new diagnoses. 

The AYAH was designed with this age group front of mind with several unique physical components as well as extensive multidisciplinary staffing to create an expert team delivering specialist palliative care. 

Differences between the AYAH and a traditional adult Palliative Care Unit (PCU):

1.Many of the referrals are for illnesses and conditions rarely seen in adult PCUs –severe neurological illness (SNI), genetic and metabolic syndromes- a population group with very extensive physical care needs. 

2. Goals of care are often not as pre-determined as prognosis is even more uncertain than many patients seen in an adult palliative care service. 

3.Parents and family play a key role in this population, and often stay with the patient throughout the admission. 

4.Respite admissions are frequent, in marked contrast to the adult PCU setting. 

Learning points:

The AYAH is meeting the needs of a patient group previously not met, and requires a unique skill set. Our learnings in the establishment of this unit would be of value for others developing such services.

Shared decision-making is widely accepted as the best approach for end-of-life decision-making. However, there is wide variation in how this is practiced and what the physician’s role is in this approach. The tenets of shared decision-making seek to protect patient autonomy, yet it is well-known that physicians can influence decision-making by either coercion, manipulation, or persuasion. Literature promotes the use of persuasion to help patients make the best decisions for themselves. However, the current descriptions of these three influences are limited to specific times of decision-making. Advance care planning has generated greater focus on preparing patients for decision-making before the need for clinical decisions arise. What remains unknown is how physicians participate in this process; how do physicians practice advance care planning? By drawing on the results of a qualitative multi-study project focusing on paediatricians’ approach to advance care planning, I propose that physicians shepherd parents of children with life-limiting conditions well before a clinical decision is needed. Shepherding is a subtle, open-ended process intended to influence parents by guiding their understanding of their child’s health and potential suffering in advance of decision-making. I argue that shepherding is distinct from the current known types of physician influence, and the intention of shepherding and its strategies are translatable to all physicians caring for patients of all ages with life-limiting conditions. From these findings, I propose how advance care planning should be practiced, and offer notes of the ethical merits and cautions when using shepherding in practice. 

Background: For adolescents and young adults (AYAs) with uncertain cancer prognoses, equitable and inclusive access to age-appropriate palliative care and end-of-life communication is critical. However, data suggests this quality of care is not widely implemented. The Global AYA Cancer Accord End-of-Life Study examined health-professionals’ perspectives on barriers to this communication, to inform training for health-professionals to effectively support it.

Aims: With health-professionals from Australia, New Zealand (NZ), and the United Kingdom (UK), and United States (USA), we aimed to: 1) examine perceived barriers to end-of-life communication and 2) determine the training needs of health-professionals.  

Methodology: Stage 1 involved a cross-sectional survey of barriers to end-of-life communication among Australian, NZ and UK health-professionals. Stage 2 used a two-round Delphi survey establishing (i) content needed in training, and (ii) preferred training models internationally.

Results: Stage 1 included 105 health-professionals from Australia/NZ/UK. Our sample included 23% oncologists/haematologists, 33% nursing professionals, 28% allied-health professionals and 16% palliative care physicians, with 16 years’ clinical experience on average (range 1-43, SD=9.5). Sixty six percent of health-professionals indicated that the greatest barrier to palliative care conversations was not knowing how to introduce the topic. In Stage 2, 77 health-professionals from Australia, NZ, UK and USA identified that structured training programs (28.6% endorsing a mode of 8 out of 10) and learning from bereaved family members (27.3% endorsing mode of 10/10) were the preferred training models to upskill in this area. Timing (37.7% endorsing mode of 9/10) and family processes (36.4% endorsing mode of 8/10) were suggested to be the most important topics for training.

Conclusions: Health-professionals identified communication skills as a key barrier to delivering gold-standard end-of-life care with AYAs. Our data identifying health-professionals’ training modality and topic preferences will directly contribute to developing sustainable training resources to underpin quality care for all AYAs with cancer. 

Background

Advance Care Planning (ACP) is the process of planning for both current and future health care.  It involves consideration of values, beliefs and preference of the patient with their family and health professionals.  There is increasing acknowledgement of the role of ACP within paediatrics.

Aims

1. To develop a clinical tool and form that would allow best practice ACP within Queensland

2. To describe the iterative process of developing this form since 2016

Methods

A collaborative and interdisciplinary committee was formed to assess forms used in other jurisdictions, and to determine what would work best in Queensland.  Voicing My Choices from the USA was acknowledged as one exemplar tool.  At the same time the adult based Statement of Choices also had a number of strengths which could be integrated into the paediatric tool.  The committee were able to develop a pilot paediatric Statement of Choices which could be trialled at the Queensland Children’s Hospital. 

Results

The pilot implementation of the tool will be discussed including feedback from consumers who have used the form.  Preliminary results include positive feedback from parents. One father said: “I like that we are able to write a statement of choice, when we feel comfortable to write it”. A mother said: “It is a holistic approach.  It is not just talking about end of life wishes.  It talks about who your child is, what they like and how you want them cared from what makes them comfortable.  Things that you don’t necessarily get on a resuscitation order”.

Conclusions

Development of the pilot form and tool has been well received from parents who have used the tool.  It is important to utilise ACP discussions and associated tools for patients who have an open-ness to use such tools.  Next steps in implementation of this pilot tool will also be discussed.

Please note: The final report for this project is currently being prepared for submission to PCA/PaPCANZ. As agreed with the Paediatric Palliative Care National Action Plan Project Manager, the specific results of the project are being withheld from the abstract to ensure that findings are not disclosed prior to the finalisation of the project report. Results will not be under embargo at the time of the conference.

Background: Palliative Care Australia and Paediatric Palliative Care Australia and New Zealand, received funding from the Australian Government as part of the Supporting Children with Life Threatening Medical Conditions and their Families 2019 election commitment, to collaboratively deliver a Paediatric Palliative Care National Action Plan (National Action Plan). This research study is one of several activities conducted to address the National Action Plan project objectives. 

Aims: For the 2018 and 2019 calendar years: 1. Identify Queensland patient groups who are referred late to specialist paediatric palliative care or are not referred at all. 2. Undertake a baseline study of paediatric palliative care need in Queensland and extrapolate to the Australian population, to provide a national snapshot of children with high medical needs and life-limiting conditions.

Methods: Routinely collected Queensland Health hospital admitted data, emergency presentation data, perinatal data, death registration data and Children’s Health Queensland Paediatric Palliative care data, were linked by Queensland Statistical Services Branch. Data were extracted for children and young people aged 0 to 21 years who had at least one life-limiting condition identified in any of the data collections of interest. International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Australian Modification codes, as cross-matched to the Hain’s Directory of Life-limiting Conditions, were used to identify conditions eligible for inclusion. Case studies detailing the experiences of Hummingbird House, Queensland’s only children’s hospice, and experiences of families who have received paediatric palliative care, were used to help bring real-world context to the administrative data.  

Results: We will present the clinical and demographic characteristics of the Queensland cohort for the 2018 and 2018 calendar years. Findings will be extrapolated to the Australian population. The context and meaning of the findings will be discussed.