Palliative Care

Paediatric Palliative Care at John Hunter Children's Hospital

Palliative Care has been defined as "patient and family centred care that optimises quality of life by anticipating, preventing and treating suffering.  Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and facilitating patient autonomy, access to information and choice." 1 Cultural needs are also pivotal in the provision of palliative care.

The Paediatric Palliative Care Service at the John Hunter Children's Hospital was established in April 2010. The Service aims to provide support to children and young people from the Hunter, New England or North Coast regions with life-threatening2 or life-limiting illness3 and their families/carers. The Service also aims to provide education, advice and support to health care professionals providing care to these young patients.

Our Staff

The Paediatric Palliative Care Service comprises a specialist paediatric palliative care doctor, a paediatric registrar, a senior nurse and a senior social worker.  In the future, the Service will also have involvement of other allied health practitioners and volunteers.

What we do

The Service requires a referral from a medical practitioner in order to see a patient. When the Service has had a referral, the existing health-care professionals will continue to be the primary health-care providers to the patient and family.

Once there has been a referral to the Service, we will generally meet with the patient, family and treating health-care professionals and gather information about the current and likely future issues.  Such a meeting may involve a home visit. 

Ongoing involvement may be:

1. Directly via home visits, out-patient clinics, telephone calls or video/teleconferencing;
2. As a consulting team if the patient is admitted to hospital; or
3. Indirectly via regular contact with local general practitioners, general and specialist Paediatricians and adult palliative care services providing care to the child or young person.

The level of support required will vary between each patient and family/carer.  It will also vary from time to time for each patient and family/carers. 

Involvement of our Service may allow a patient to be cared for at home at the end of life if that is what the patient and family/carers wish. If hospitalisation is required, involvement of our Service may help with the timely management of symptoms and transfer to a ward setting.

The Service will also assist with the provision of bereavement support for families/carers whose child has been referred to our Service and has subsequently passed away.

Contact us

If you feel that the Palliative Care Service might be helpful in your circumstances, you will first need to discuss this with a doctor involved in the child/young person's care and obtain a referral to the Service.

If there has been a referral, please phone and a leave a message with our Secretary on (02)49 213387 or email PaedPallCare@hnehealth.nsw.gov.au and one of our team members will contact you. Other contact arrangements will be made on a case-by-case basis.

References

1 National Quality Forum. A national framework and preferred practices for palliative and hospice care quality Washington DC: National Quality Forum, 2006
2  "Life threatening conditions" are those where cure is possible, however if treatment fails, the child or young person could die.
3  "Life-limiting conditions" are those for which there is no cure and where life expectancy is significantly shortened.