Paediatric palliative care in Aotearoa New Zealand—current state and future direction

The palliative care needs of pēpi (babies), tamariki (children) and rangatahi (young people) and their whānau (family, including extended family) have been acknowledged in Aotearoa New Zealand for the last 25 years.¹ Unfortunately, despite consistent advocacy over this time, there has been a low priority afforded to paediatric palliative care policy, service delivery and funding in Aotearoa. This has resulted in inequitable access to quality generalist and specialist paediatric palliative care, which is largely dependent on the geographical location of the child and the skills, knowledge and capacity of the clinicians around individual children and their whānau.

There is currently only one permanent, publicly funded specialist children’s palliative care service, based at Starship Children’s Hospital in Auckland. There has been limited, accessible and regular professional development for clinicians providing generalist paediatric palliative care within Aotearoa. Furthermore, while there is a body of international research to support the growing need for paediatric palliative care services and support, there is a lack of specific research in Aotearoa to identify and assist the needs of tamariki and whānau. For example, little is known about the nature and scale of inequities faced by tamariki Māori and whānau, and Pacific children and their families at end-of-life, or the extent to which current services are meeting their needs.

This paper will discuss the current state of provision of children’s palliative care throughout Aotearoa and highlight the urgent attention required to address the needs of all babies and children and, more specifically, Māori pēpi, tamariki and rangatahi living with serious illness and their whānau. The paper will also present research priorities within children’s palliative care in Aotearoa.

Background

Paediatric palliative care has been well defined by the World Health Organization (2018).² In short, paediatric palliative care is an approach to care that improves the quality of life of children with serious illness and their families, through the identification and assessment of suffering and treatment of distressing symptoms—physical, psycholgical and spiritual.² In Aotearoa, paediatric palliative care is informed by a widely accepted Māori model of healthcare, Te Whare Tapa Whā.³ This model uses a whāre (house) to symbolise oranga (wellbeing) as a collective of Taha Wairua (spiritual wellbeing), Taha Tinana (physical wellbeing), Taha Whānau (family and psychosocial wellbeing) and Taha Hinengaro (mental and emotional wellbeing), with a child and whānau connected to and situated within the land and environment. To achieve oranga using the Te Whare Tapa Whā model, a collaborative, multi-disciplinary approach is required, integrating generalist (primary paediatric teams and primary care) and specialist paediatric palliative care.

International standards published recently by Benini et al.⁴ highlight the importance of ensuring access to palliative care for children with life-threatening, life-limiting or serious illness. Access to paediatric palliative care is a fundamental right for children with serious illness and their whānau. It is a right to care that enhances quality of life, and addresses the needs, choices and wishes of the child and their whānau.⁴ Quality of life responds to the physical, mental, emotional, social, spiritual and cultural dimensions that are important to each whānau. Sadly, these standards are not met internationally⁵ or within Aotearoa.⁶ Table 1 highlights where Aotearoa falls short in meeting the published international standards.⁴

View Table 1.

In 2022, significant health reforms were introduced in Aotearoa. These reforms have seen 20 district health boards merged to form a single entity, Te Whatu Ora – Health New Zealand. A separate Māori Health Authority, Te Aka Whai Ora, was also established to advocate for the health needs of tangata whenua or Māori, the Indigenous population of Aotearoa, ensuring health services are accessible and meet the needs of all New Zealanders.⁷ Te Aka Whai Ora has since been disestablished following a change in government, with an intention for the work of Te Aka Whai Ora to be integrated into Te Whatu Ora – Health New Zealand. One of the driving forces of these reforms was to reduce the “postcode lottery” for New Zealanders, where access to treatment and healthcare is dependent on the patient’s location or address. This has seen people living in rural and regional areas have a limitation in timely access to specialist services, which reflects the current provision of palliative care services for children in Aotearoa.⁸

The Pae Ora (Healthy Futures) Act 2022 was legislated⁹ with the introduction of the health reforms, the purpose of which was to provide for the public funding and provision of services to: protect, promote and improve the health of all New Zealanders; achieve equity in health outcomes among New Zealanders; and build towards Pae Ora for all New Zealanders. Furthermore, this Act stipulates that all New Zealanders should have access to services to meet their needs and receive equitable levels of service.⁹ This has yet to translate to children across the mōtu receiving adequate palliative care services, with anecdotal evidence of substantial geographical and cultural inequity, especially for Māori and Pacific whānau.

Paediatric palliative care service delivery

Paediatric palliative care has been recognised as a subspecialty of paediatric medicine in Aotearoa since the late 1990s, which coincided with the establishment of the only specialist centre in Auckland—the Starship Palliative Care service (1999). Despite consistent advocacy from leaders in the field, there has been limited progress in further development of paediatric palliative care services throughout Aotearoa.^6,8

The advocacy did result in the commissioning and publication of a report Guidance for integrated Paediatric Palliative Care services in New Zealand by the Ministry of Health in 2012. The goal of this report was to provide an implementation-focussed guide to improve the integration of palliative care service delivery to children and young people across Aotearoa.⁸ This report highlighted the need for service development and growth, and provided a 3-year implementation plan to develop a co-ordinated approach to care delivery. The co-ordinated approach envisaged the Starship service remaining as the specialist paediatric palliative care centre in Aotearoa, with a funded clinician identified in each district and training and expertise to support the delivery of children’s palliative care. Regardless of the clearly identified need and the outlining of a robust implementation plan, no further investment in paediatric palliative care was forthcoming.

The Starship Palliative Care service remains the only Te Whatu Ora – Health New Zealand funded specialist multidisciplinary paediatric palliative care service in Aotearoa. The service remains small and vulnerable to workforce pressures. This vulnerability has recently been highlighted by a long-standing pioneer in paediatric palliative care leaving the service to work overseas. Furthermore, given the lack of funding of training positions and education opportunities in paediatric palliative care, there remains only a very small number of trained and skilled specialists across medical, nursing and allied health. The current trained workforce in this subspecialty of paediatrics is inadequate to meet the needs of the current population of children with palliative care needs and their whānau, let alone the needs of the expected increase in the population of children with serious illness over the next 10 years.

Current data

There is a paucity of available data of the nature and extent of palliative care need among children in Aotearoa and, even more concerningly, the population of children currently accessing services. However, clinical experience, as well as informal and formally published reflections from whānau across the country, suggest current service provision is staggeringly inadequate to meet the needs of the approximately 350 children who die of serious illness in Aotearoa each year, and the much larger group of children who could benefit from specialist palliative care input.^8,10,11 While general paediatric services across Aotearoa currently provide palliative care to children and their whānau in regional centres, many have commented they feel ill-equipped to manage the palliative care need of children with serious illness.

Additionally, international research has identified the number of children and young people living with serious illness is increasing rapidly due to advances in medical technology and treatments of many conditions. In the United Kingdom, it is estimated the prevalence of serious illness in children 0–19 years could be as high as 84.22 per 10,000 children as soon as 2030.^12,13 For the current Aotearoa population of 1.2 million children, this translates to a threefold increase in children requiring palliative care support within the next 10 years, or 10,000 children and their whānau with 10% of this group, or 1,000 children, requiring end-of-life care in any given year. This makes it critical we address inequities and expand paediatric palliative care service provision to ensure Pae Ora (Healthy Futures) Act 2022 can be achieved for all Aotearoa whānau, as legislation stipulates.⁹

Inequity

It is widely acknowledged by clinicians and whānau around Aotearoa that access to specialist services is inequitable for tamariki. Paediatric palliative care is a prime example, as it looks very different across the motu, with wide regional variability in care provision, contact with specialist palliative care and access to integral supports such as psychosocial care. While inequity exists geographically in Aotearoa, it is also well documented that tamariki Māori and their whānau also experience inequity of access to healthcare.¹⁴ This has been highlighted in tamariki Māori access to primary care. Currently, there is no information on whether tamariki Māori have equitable access to children’s palliative care services.

However, the adult palliative care literature has emphasised the challenges whānau Māori face in accessing palliative care services.^15,16 Palliative care services throughout Aotearoa have long been under-resourced and supported by charitable donations. This has meant government funding has tended to prioritise physical symptom management and, by default, neglected the importance of spiritual, cultural and psychosocial wellbeing as core to the patient and whānau’s experience of health.^15,17 This is in direct contrast to the te ao Māori approach, which acknowledges a much broader understanding of health,¹⁶ represented in Sir Mason Durie’s Te Whare Tapa Whā model of healthcare.^3,18

Urgent work is needed to evaluate current accessibility and acceptability of service provision in paediatric palliative care for whānau Māori. It is essential that Māori approaches to healthcare are considered and integrated into service delivery, education and professional development of clinicians and research being carried out in this field. We must also consider how we can develop a sustainable paediatric palliative care workforce in Aotearoa that reflects the population of children and whānau cared for. This must include increasing the number of Māori clinicians working in the speciality.

Impact of investment in paediatric palliative care

The literature suggests children with serious illness who have access to palliative care services have an improved quality of life and improved symptom management.^19,20 This can result in children living longer, with an improved quality of life, and whānau being enabled to care for their child in their preferred place of care at the end-of-life.²¹ While the benefits are apparent for child and whānau, it is also important to acknowledge the impact adequate palliative care provision can have on the healthcare system.

Quality paediatric palliative care delivery often means children require fewer bed nights in hospital by remaining in the community with their whānau.^21,22 Furthermore, paediatric palliative care input may mean unnecessary and futile interventions are avoided at end of life. This has a direct impact on the healthcare dollar spend, as well as the quality of life and wellbeing of child, whānau and health professionals.^22,23 The whānau of children who die without adequate access to paediatric palliative care can carry the burden of care and memories of distress and suffering through the remainder of their lives.²⁴ This can contribute to complex grief responses in bereavement and lead to whānau requiring further access to health services for support through the remainder of their lives.^22,25,26

What are the priorities moving forward?

Service delivery

It is clear that further investment in paediatric palliative care is needed to ensure every child with a serious illness has access to quality palliative care. In order to achieve this, there needs to be:

• Growth and development of current specialist services, including recognition of the need for training positions to ensure sustainability of service delivery.
• Recognition of, and embedding the role of, general paediatric palliative care providers, including paediatric teams, primary care and adult palliative care providers within a national co-ordinated approach.
• Access to ongoing professional development and education in paediatric palliative care for generalist providers across Aotearoa.
• Integration of tikanga Māori into service delivery and partnership with Māori health providers and iwi to ensure services meet the needs of tamariki Māori and their whānau. This requires consideration of the experience of whānau Māori and ability to access services, which requires consideration through research.

At a minimum, every child with a serious illness and their whānau, across the motu, should be receiving quality, evidence-based and compassionate generalist paediatric palliative care from their primary healthcare team. Furthermore, every paediatric healthcare team in Aotearoa should have 24/7 access to a specialist paediatric palliative care service for support and advice in managing and supporting children and whānau. This will only be possible with further education of generalist providers, and increasing the workforce of specialist providers. Given Aotearoa is a small country, the provision of integrated, high-quality care will be reliant on a national co-ordinated approach to delivery of paediatric palliative care.

Research

There is also an urgent need to develop research that is specific to the Aotearoa context.

Priority areas for future research include:

• Identifying the prevalence, and nature, of palliative care need among children in Aotearoa.
• Describing the population of children currently accessing specialist children’s palliative care in Aotearoa and identifying inequities in access.
• Exploring the child and whānau experience of palliative care and end-of-life care in Aotearoa, with a particular focus on communities known to be under-served by healthcare, including Māori and Pacific whānau, children living with a non-cancer condition or disability and whānau living in regional and rural Aotearoa.
• Capturing rangatahi and whānau experiences of transition from paediatric to adult palliative care services.
• Examining the education and support needs of clinicians working in generalist paediatric palliative care and identifying effective education and training interventions.

Conclusion

This paper highlights the urgent requirement for action to ensure equitable and sustainable specialist palliative care services for children with serious illness throughout Aotearoa. While Aotearoa recognised the value of paediatric palliative care in the late 1990s, there has been a woeful and shameful lack of policy and service development since, while research has been essentially forgotten. This means that many children and whānau are missing out on their basic right to this essential care.⁴ The consequences of this avoidable poor care for children are far reaching and must be considered unacceptable. They include the financial burden on the health system of increased hospital stays and unnecessary interventions, and the physical and emotional burden to children and their whānau of poor symptom management, impaired quality of life and complex grief responses following a child’s death for bereaved whānau.^22,24,25 It is essential that Aotearoa invests in children’s palliative care to give every child with a serious illness the opportunity to reach their full potential with appropriate specialist support.^4,14