topic 3 | Activity 7: Collaborative approaches to care

Service delivery models for children with life-limiting illness

Many children with life-limiting illness are cared for by a multidisciplinary team including specialist palliative care providers as well as primary health and community health professionals. Being cared for by palliative care does not mean that a child is dying, in fact many children with life-limiting illness live into adulthood, but palliative care helps them to live as well as possible.

Paediatric palliative care is a highly specialised area of healthcare. A collaborative approach to care and decision-making is required to effectively respond to the complex needs of children and their families and enable ongoing support across the illness trajectory and outside of specialist settings. The transition to palliative care can be an especially difficult time. Coordination of care between acute and palliative care services is very important.[1]

Specialist paediatric palliative care services generally act in a consultative way to support the other members of the healthcare team, providing advice on pain and symptom management, practical supports and support during complex decision-making processes.[2]

Shared care models are commonly used in paediatric care. In these models, there is joint responsibility for care that is agreed between primary and specialist healthcare providers, the child and family. Shared care models are especially important for children and families living in rural and remote settings. Some strategies that support a shared care approach include:

Communication protocols that provide clarity around health provider roles and support communication between primary and specialist providers, as well as the child and their family. This requires greater use of secure messaging platforms and accessible online health records, as well as case conferencing, using telehealth when required
Interprofessional collaboration that is guided by evidence-based clinical practice guidelines
Care coordination that is supported by a case manager or nurse coordinator / navigator role
Continuity between services relies on good communication systems between primary health networks and local health and hospital networks, including use of health pathways. [3]

Coordination of care

Ensuring continuity and coordination of care for children and families is critical. A care coordinator is someone who has ongoing involvement with the child and family during the palliative care phase or during transition from paediatric to adult services. Some expectations of this role include:

Providing a link between the child and various healthcare teams involved in their care
Helping the child navigate services
Acting as a representative for the child, to support and advocate as needed
Ensuring the child has support for education and employment, community inclusion, health and wellbeing, and independent living and housing options
Supporting the child following transition to adult services and handing over care to a care coordinator in adult services.[4]

Key elements of a coordinated service delivery model for children with life-limiting illnesses are included in the following table. [1-2, 4]

Elements of a coordinated service delivery model for paediatric palliative care
Integrate services across the continuum of care	Deliver a comprehensive service with a family-centred care approach Allow families to make informed choices about care of their children Coordinate and integrate paediatric palliative care services Integrate all aspects of care under same goals.
Provide appropriate home-based support	Provide support and resources to give families the option of caring for children at home Provide access to palliative care services and resources Ensure adequate respite facilities when required, including out-of-home as well as in-home options, and short or longer-term Recommend appropriate community support organisation.
Provide a coordinated, flexible and responsive program	Allow for flexibility of care needs for children and their families, between home, hospital and palliative care service Promote coordination and continuity of care through a collaborative approach from health professionals and community-based palliative care services.
Improve access to services for rural communities	Identify strategies to overcome isolation that causes problems with accessibility, costs, travel, disruption to home life and more Recruit and train clinical and non-clinical service providers in rural and remote regions Facilitate regular telecommunication links with palliative care services for families living in rural and remote areas Develop specific strategies to provide support to communities through online and phone services.
Improve the interfaces with other related sectors	Strengthen links between paediatric palliative care services and disability and education sectors Integrate paediatric and adult palliative care service Paediatric palliative care service may have a 24 hour advisory service.
Develop and implement educational programs	Assist and provide appropriate education for children and families to understand what palliative care is and how it can assist them Provide palliative care training and education for generalist workforces, particularly for those in rural and remote areas Ensure formal training, feedback and a means of challenging current practices of paediatric health professionals in their thinking about paediatric palliative care.
Provide professional development	Provide paediatric-specific, clinical support and professional development opportunities for health professionals providing a palliative approach to care

Thinking Points

List health professionals who can be involved and the role they would play in care of a child with a life-limiting illness and their family.
Describe strategies for ensuring coordination of care for a child with a life-limiting illness.

References

Therapeutic Guidelines. 2023. Principles of Paediatric Palliative Care. Melbourne.
Paediatric Palliative Care Australia and New Zealand. 2023. A Practical Guide to Palliative Care in Paediatrics.
RACGP, 2023. Shared Care Model between GP and non-GP specialists for complex chronic conditions. Royal Australasian College of General Practitioners: Quality Care
Palliative Care Australia. 2018. Paediatric Addendum – Palliative Care Service Development Guidelines.