Dr Ross Drake jobber som Clinical Lead of the Paediatric Palliative Care and Complex Pain Services at Starship Children’s Hospital in Auckland, New Zealand. Her kan du lese Dr Ross Drake sin ferske fagartikkel om palliativ behandling for barn.
Palliative Care for Children in New Zealand
Dr Ross Drake
Clinical Lead, Paediatric Palliative Care Service, Starship Children’s Hospital, Auckland
Dr Ross Drake is the Clinical Lead of the Paediatric Palliative Care and Complex Pain Services at Starship Children’s Hospital in Auckland, New Zealand having gained fellowships in Paediatrics (2000), Palliative Medicine (2003) and Pain Medicine (2011). Both are small, interdisciplinary teams of specialist paediatric health workers. His professional interests include best use of medications and other interventions in children’s palliative care and pain management, neuropathic and central pain syndromes as well as communication and the decision-making process for children and young people with life-limiting conditions.
Aotearoa/New Zealand (NZ) is considered a small, geographically isolated, island nation which sits in the south-west Pacific in the temperate zone of the world. Its ocean surrounds and lack of a continental influence provides a mild climate with temperatures in populated areas rarely below 0°C or above 30°C. However, belying small country status NZ extends more than 1,600 km along its main axis from Cape Reinga at the top of the North Island to Bluff at the bottom of the South Island. This is equivalent to the 1,752 km of Norway or comparable to the distance just north of Copenhagen to Marseille, in southern France!
In other similarities to Norway; New Zealand only has a maximum width of 400 km (vs. 430 km), making access to the extensive coastline of approximately 15,134 km (vs. around 25,000 km) easy for the majority of the estimated 5 million people that inhabit NZ (vs. 5.4 million in Norway). This also means the overall population density is low. Besides the two main islands there are numerous smaller populated islands, most notably, Stewart Island and the Chatham Islands. NZ is the first populated land to see the new day as the longitude of the country is in the extreme east of the Prime Meridian with NZ standard time eleven hours ahead of Greenwich Mean Time.
The South Island has the largest land mass with 1/5th of the overall population and is divided along its length by the Southern Alps which consists of 18 peaks over 3,000 metres, the highest being Mount Cook/Aoraki at 3,754 metres. Large tracts of forest are devoted to national parks with the south-western corner, Fiordland, being an area of high mountains cut through with steep fjords. The more populated North Island is less mountainous and the site of the capital city, Wellington, and the largest city, Auckland at 1.7 million people; around 2.5 times the population of Oslo. A large volcanic plateau runs through the centre of the North Island and forms the highest mountain; Mount Ruapehu at 2,797 metres and the country’s largest lake, Lake Taupo; a water filled caldera.
NZ is a developed country run by a parliamentary democracy governmental system and constitutional monarchy with Queen Elizabeth II the current sovereign. NZ, like Norway, ranks highly in international comparisons in many areas including educational attainment, economic freedom and is considered to have amongst the most liveable cities in the world. There is a strong bicultural awareness with the Treaty of Waitangi, named according to the place where it was first signed, recognised as the founding document of NZ. The Treaty being an agreement between the British Crown and about 540 Māori rangatira or chiefs signed on 6 February 1840. It provides a broad statement of principles upon which the nation and government was built and it is common to refer to the intention, spirit and principles of the Treaty in Acts of Parliament despite not being considered part of NZ domestic law.
The majority of the NZ population identified as European (70%) in the 2018 census while the indigenous Māori people make up the largest ethnic minority at 16.5% of the population. Asian (15.3%) and Pacific (9%) peoples make up other significant ethnic groups. The most commonly spoken language is English and Māori, spoken by 4% of the population, is an official language.
Health Care System
The Minister of Health has overall responsibility for the health system in NZ and in 2019 the NZ government contributed 82% of the overall health expenditure; 9.5% of GDP or USD$ 3,937 per capita in 2017. The Ministry of Health (MOH) is given the responsibility for leading and supporting the health sector by providing national policy advice, regulation, funding and monitoring the performance of each of the 20 District Health Boards (DHBs) who are responsible for providing or funding health and disability services in their community. National priorities are identified in the New Zealand Health Strategy and the New Zealand Disability Strategy, with additional Ministerial priorities and health targets, reflected in DHB plans and accountability arrangements.
DHBs also own and run the public hospitals which provide a free, relatively extensive and high-quality health service to citizens or permanent residents. However, long waiting lists have developed for a number of operations and a secondary market of private health insurance allows members to have treatments and operations in the private sector.
Paediatric Palliative Care in NZ
Children under the age of 18 years makes up 23% (1.12 million) of the NZ population with the prevalence of children who could have been supported at the end of life by paediatric palliative care (PPC) appraised at 2.3 per 10,000 (minimum range estimate) to 3.2 per 10,000 (maximum range estimate). Children with non-cancer life-limiting conditions made up around 85% of those in need . In a study looking at location of death for children aged 28 days to 18 years with a life-limiting illness over a 4-year period 42% were found to have died at home with those receiving palliative care more likely to have been at home at the time of their death .
The size and population of NZ presents a specific set of difficulties when it comes to providing equitable access to children and their families/whānau who require any form of highly specialised, tertiary level care such as palliative care. Simply, how can a limited workforce deliver effective palliative care to a small number of relatively, widespread affected children in an environment of constrained health funding?
Palliative care for children was established in NZ after a 1998 assessment by the MOH in conjunction with the Paediatric Society of NZ was conducted as part of a national review of paediatric speciality services . PPC was included as a direct result of the seminal publication, “A guide to development of children’s palliative care services” . The NZ review identified familiar gaps and inconsistencies in respite care, youth specific services, bereavement services and access to equipment, particularly for children with non-cancer conditions, as well as highlighting a lack of expertise in palliative care.
The core recommendation was the establishment of a national specialist palliative care service that supported local or regional coordinators or link workers who, in turn, worked with local paediatric health professionals. A national network would be derived from this core group and be charged with developing national standards of care and monitoring outcomes. In 1999, a specialist service was established at Starship Children’s Hospital in Auckland. This remains the only specialist PPC service and was formally acknowledged as a national service thirteen years later, following a further MOH review .
The service offers palliative care to children and their family/whānau domiciled in the greater Auckland region and provides advice and support nationally. The aim is to deliver seamless palliative care across the hospital-community continuum in the setting(s) of choice. This is achieved by maintaining a strong community focus and embracing the attitude of collaborative service delivery. Adherence to the ideal of collaboration ensures liaison with and support of paediatric services in the hospital and the appropriate community service(s) once the child returns home. The team provides regular updates to all involved and maintains the crucial link to the primary paediatric team in recognition of the often long-standing relationships that have been built between health professionals and the child and their family/whānau.
The service has a more prominent role once the child returns home reflecting its capacity to provide home based care. To ensure the child and their family/whānau have timely access to 24 hour, 7-day a week care the service links and supports, wherever possible, local health services including community paediatric services, adult palliative care services and primary health care professionals to provide the necessary day to day care, in addition to providing direct clinical care. The role of the service usually increases when the child enters the end of life phase, acknowledging this as a core skill of a PPC service.
The service has had minimal increase in personnel since inception and currently consists of 1.3 FTE PPC specialist, 1.0 FTE nurse practitioner, 0.8 FTE nurse specialist, 0.8 FTE paediatric social worker, 0.5 FTE psychological support provided by a child psychotherapist and child and adolescent psychiatrist. The service covers the age range of 0 to 18 years (occasionally older) and has implemented a 2-year transition program to adult services for children with longer term conditions once they attain 15-years of age. The service is also available for parents who receive a prenatal diagnosis of a life-limiting condition and do not wish to have a termination of pregnancy. The number of children cared for in each age cohort remains relatively stable with around 30% of referrals for infants less than 1 year of age and about 20% each for children aged 1 to 5 years, 5 to 10 years and 10 to 15 years. For children over 15 years of age the rate of referral is around 10%.
The referred children have a large variety of conditions but cancer (35 to 40%), neurological disorders including metabolic diseases and congenital syndromes (30 to 35%) and cardiovascular anomalies (10 to 15%) are the most common categories. The dominant cancer group is consistently cancers affecting the central nervous system. The remaining 10 to 25% comprise a diverse group of conditions affecting the respiratory, skin, infectious/immune (non HIV/AIDs), renal, hepatic, gastroenterology and other systems.
Evolution vs. Revolution
What became increasingly evident with the establishment of the Starship service was the inequity of access faced by many children and their families/whānau around the country. This being due to the lack of a systematic approach despite the clear path heralded by the speciality review . In response, advocacy to effect change started in 2003 when lobbying ensured paediatric representation on the newly formed MOH Palliative Care Working Group. This transforming in 2008 into the Palliative Care Advisory Group with a mandate to advise the MOH on its palliative care work program.
The campaign for children’s palliative care was supported by a dedicated group of Paediatric Society members which in 2011 became, due to their effectiveness, one of the first clinical networks of the Society. The work achieved over the decade (2003 to 2013) culminated in the commissioning by the MOH and publication in 2012 of the cornerstone document “Guidance for Integrated Paediatric Palliative Care Services in New Zealand” . This paper provided an evidence based approach to a recommended model of care best suited to the cultural diversity and circumstances of NZ and proposed an implementation program. This program included the development of clinical guidelines which were subsequently completed for end of life care and been regularly accessed by NZ paediatric services and specialist services internationally. These guidelines are currently being updated. The PPC Clinical Network has had additional success in launching a monthly Education Forum. This has been exceptionally attended by paediatric and adult palliative care services around the country for the past 5 years.
Alongside of this pivotal work the Starship service and has been active regionally by working with Australian PPC services to develop and implement a set of clinical indicators to measure clinical outcomes to inform service development. A collaborative, prospective observational research programme involving international sites was established by the author in 2019 to look at the effectiveness and harms of commonly used medications and other interventions in PPC.
The Starship service has influenced the hospital’s focus of “Do Not Resuscitate” orders to initiate an “Allow Natural Death” policy and accompanying “End of Life Care Plan—Te Wa Aroha” (A Time or Journey of Love). This has been embraced by the Starship community and been used by many paediatric services around the country to guide similar goals of care plans.
Service Development outside of Auckland
The delivery of PPC outside of Auckland is most commonly provided by generalist paediatric teams at the local hospital or at the child’s home through community paediatric nursing services. The general paediatric services, largely composed of medical and nursing personnel, go the extra distance when children and their families/whānau require end of life care.
The Guidance document recommendation to implement regional link workers for PPC has not eventuated. In large part because the MOH has not mandated this of DHBs and these organisations have not prioritised this work despite a case having been made for a shift of existing funding to set up these positions which acknowledges the work is already being done by staff. It also affirms the willingness of the Starship service to support and assist development of specialist skills in local settings. In response the Starship service is in the process of establishing a permanent PPC fellowship position for trainees in paediatrics.
However, other areas of NZ have moved forward with providing PPC. The adult hospice service in the largest South Island city of Christchurch has had a full time nurse specialist for children’s palliative care for several years with a further position to soon be appointed. While the Christchurch Paediatric Oncology Service has designated 0.2 FTE for a Paediatric Oncologist to provide PPC for children and their families/whānau when cancer cure is no longer possible.
In the Waikato region, region immediately below Auckland, two non-governmental organisations provide palliative care for children and their families/whānau. Rainbow Place opened in June 2003 as part of the adult Hospice Waikato complex. Nursing and counselling support and in-hospice respite care is provided to a small group of children and their families/whānau with life-limiting conditions while counselling support is available for children who have a significant adult family member with a palliative condition. True Colours Charitable Trust has taken a wider approach by providing nursing and psychotherapy support to children and their families/whānau with serious illnesses including those requiring palliative care. Both services include bereavement care and seek the expertise, advice and support of the specialist service in Auckland.
In a small number of areas in NZ relationships have developed between adult hospice and paediatric services whereby they support each other with their specific knowledge to the advantage of the children and their families/whānau needing palliative care. This relationship has the added benefit of offering access to counselling/bereavement services to the family/whānauincluding siblings of the ill child. For the most part, collaboration has arisen when individuals from each service have forged a relationship of understanding.
In acknowledgement of this relationship approach to a working state being fragile, as it relies on individuals who invariably move onto new challenges, and resourcing being a barrier to ideal service delivery a Memorandum of Understanding was developed between the Clinical Network and Hospice NZ (the representing agent for most adult hospices in NZ) to recognise the unique knowledge and skills of respective services and agreement to work collaboratively to provide holistic child & family/whānaucentred palliative care. This has aided some areas to develop a more robust systems approach to collaborative working.
Hospices for Children in NZ
NZ does not have a children’s hospice and the NZ environment and lack of funding does not suit the development of children’s hospices. The model of care outlined in the Ministry Guidance document  was explicitly designed to cater for the desire of the majority of children and their families/whānau to remain at home for as much of their palliation as possible. This being particularly important for Māori and Pacific peoples.
Realistically, NZ has only one city, Auckland, of sufficient population to sustain the quintessential children’s hospice. This raises significant issues for children and their families/whānau ability to access such a facility with travel taking them away from their community supports. It is also very unlikely that NZ would be able to sustain the financial cost of such a facility especially when government support for children’s palliative care is little more than the salaries of the Starship service.
The attitude of the Clinical Network has been to build clinical skills so local services can deal with the majority of issues that arise for the child and their family/whānau; be they physical, emotional, social, spiritual or cultural. The matter of respite care, in many ways, is a problem for the wider paediatric health community rather than a specific issue for PPC. Intrinsically, it requires creative approaches at a local level.
The clinical practice of palliative care for children does not have one recipe for success rather it requires an individualised, adaptable approach that relies on relationship and communication. Likewise, developing an equitable and accessible palliative care service for children requires a similar, personalised approach. The focus for NZ has been to enable regions to use their resources in the most effective way possible while ensuring a minimum standard of care that can be raised over time.
New Zealand has achieved what it has by taking a “top-down” approach. That is by establishing a specialist service for children which has accepted a national role. This has required a professional and strategic mandate only made possible with the engagement and investment of the MOH and identified key stakeholders. The most important support having come from the wider paediatric health community and palliative care groups. The formation of a Clinical Network was a significant moment in the NZ experience as it added diversity and energy to the work programme and enhanced communication.
The benefit has been completion of essential bodies of work, most notably an overarching strategy, accepted model of care, needs assessment, gap analysis and the development of clinical guidelines. Barriers remain but, like the practice of paediatric palliative care, having a strong, committed group of interested people offering different perspectives allows solutions to overcome impediments.
- Naylor W. National Health Needs Assessment for Palliative Care. Phase 1 Report: Assessment of Palliative Care Need. Palliative Care Council of New Zealand: Wellington, June 2011
- Chang E, MacLeod R, Drake R. Characteristics influencing location of death for children with life-limiting illness. Arch Dis Child 2013; 98(6):419-24
- Through the Eyes of a Child: A national review of paediatric specialty services. Ministry of Health: Wellington, 1998
- A guide to the development of children’s palliative care services. Report of a joint working party of the Royal College of Paediatrics and Child Health (RCPCH) and the Association for Children with Life-Threatening or Terminal Conditions and their Families. RCPCH: London, 1997
- Guidance for Integrated Paediatric Palliative Care Services in New Zealand. Ministry of Health: Wellington, September 2012