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Transitioning to adult palliative care

About transitioning from paediatric to adult palliative care services

The development of life-prolonging therapies has led to an increasing number of children with life-limiting illnesses surviving into adolescence and adulthood. As these children become adolescents or young adults, they require transition into adult palliative care services.

Transition is patient-centred and happens in 3 phases. General practice plays a key role.

Phase 1 - Preparing for adulthood and planning transition to adult services

Paediatric palliative care team:

  • Identify and consider patients for transition from age 12 years, aiming for the young person to be fully transitioned to adult services by age 18 years

  • Discuss transition with the young person and their family/whānau. Provide Parent/Caregiver checklist and Young Person checklist

  • Arrange a multidisciplinary meeting between paediatric palliative care, adult palliative care, children's community nurse, adult district nurse, and general practice team

  • Share with adult palliative care and general practice teams the patient's:

    • Summary letter (including medical condition, expected prognosis, social background, paediatric palliative care team involvement and current issues)

    • Checklists

    • Advance care plan (if one exists)

  • Refer to hospice or adult palliative care as appropriate

Adult palliative care team:

  • Review summary letter, checklists, and advance care plan if one exists

  • Identify a team member (social care team member or nurse) to be the key contact person for transition

  • Key contact attends multidisciplinary meeting

General practice team:

  • Review summary letter, checklists, and advance care plan if one exists

  • Identify a team member (general practitioner or nurse) to be key contact person for transition

  • Key contact attends multidisciplinary meeting

  • If there are any concerns, seek children's palliative care advice:

    • Duty phone: 021 823 424

    • Email: starshippallcare@adhb.govt.nz

Phase 2 - Preparing to step up to adult services

Paediatric palliative care team:

  • Arrange joint visits between the young person and their family/whānau, and paediatric palliative care, adult palliative care, and general practice teams. These may occur at general practice, or the key contact for the general practice team may attend visits off-site or via video-conference

  • Establish decision maker in the family or whanau through whom to communicate information

  • Continue using Parent/Caregiver checklist and Young Person checklist during joint visits to guide transition

  • Develop a crisis plan and/or advance care plan with the young person and their family/whānau, if one is not already in place

Adult palliative care team:

  • Attend joint visits

General practice team:

  • Attend joint visits at practice, off-site, or via video-conference

  • Gradually take over primary prescribing responsibilities, with guidance from paediatric palliative care team

  • If there are any concerns, seek children's palliative care advice:

    • Duty phone: 021 823 424

    • Email: starshippallcare@adhb.govt.nz

Phase 3 – Settling into adult services

Paediatric palliative care team:

  • Discharge the young person to primary care and adult palliative care.

Adult palliative care team:

  • Identify a key contact for the young person and their family/whānau

  • Become primary service for specialist support and advice

General practice team:

  • Identify a key contact for the young person and their family/whānau

  • Become the lead carer and primary prescriber

  • If there are any concerns seek advice from local adult palliative care service

Clinical resources