Is there a place for children s hospice services in New Zealand?

Transcription

1 Is there a place for children s hospice services in New Zealand? Wayne Naylor, Director of Nursing Zoe Fairbrother, Nursing Team Leader Yvette Hobbs, Family Services Team Leader

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3 What is palliative care for children? Palliative care for children is the active total care of the child s body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child s physical, psychological and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources. It can be provided in tertiary care facilities, in community health centres and even in children s homes. (WHO Definition of Palliative Care)

4 What is palliative care for children? The generally agreed attributes of high-quality PPC are: adherence to the WHO definition of PPC philosophies of child and family-centred care care that is provided in a preferred setting care that is based on need and implemented throughout the illness course, from the point of diagnosis to bereavement collaborative decision-making between the child, family and providers service delivery by providers with paediatric training and experience multidisciplinary teams key workers respite care 24-hour support, 365 days a year (Guidance for Integrated Paediatric Palliative Care Services in New Zealand, 2012)

5 NZ estimates of need? Child and young person estimates: (based on Census 2013 population) End of life care (Palliative Care Council, 2011) 2.3 per 10,000 require end of life care 263 per year Palliative care (Drake, n.d.; EAPC, 2009) 15 per 10,000 require palliative care 1,742 per year

6 Child and young person (age 0-19) estimates for end of life care / palliative care need by DHB Region (2013 census population) 11/64 23/217 27/164 41/225 15/85 28/155 7/43 4/21 6/45 12/65 3/25 11/67 17/110 6/58 2/16 Total 213/1,359

7 Child and young person (age 0-19) estimates for end of life care / palliative care need by DHB Region (2013 census population) 8/51 2/12 20/184 4/20 16/116 Total 50/383

8 Waikato DHB data

9 Children s hospice services - UK First children s hospice Helen & Douglas House, est in Oxford 52 children s hospice services in UK (Together for Short Lives) 14 have wings/units/rooms or buildings for age group (Kirk & Fraser, 2014) Services provided: Bereavement support Children's hospice service Emotional support Family support Hospice - for young adults Information and advice Respite and short breaks Therapies Equipment provision Community nursing

10 Children s hospice services - USA Few dedicated children s hospices Hospice based dedicated PP/HC teams Adult hospices with dedicated paediatric staff 2007 NHPCO member survey (378 responses) 78% accepted children 36.6% formal paediatric programme 21.7% of those without programme had specialised paediatric staff children admitted per year (NHPCO, 2015)

11 Children s hospice services Aus 10 specialist PPC providers 7 hospital based 3 hospices Very Special Kids (Melbourne) Bear Cottage (Sydney) Hummingbird House (Brisbane) Services provided: Counselling & Emotional Support Bereavement Support Sibling Support Family Support Volunteers Holiday programmes/camps Regional Services Inpatient care

12 New Zealand context Relatively small number of children/young people needing PC Widely dispersed population Funding Cultural diversity / ToW National SPPC service based at Starship Children s Health

13 Challenges Unique children s needs: Developmental stages Processing information, assessment and symptom management Range of diseases and experience of disease - longer more variable trajectories, uncertain prognosis Ability to participate in decision making/care planning Consent/authority Range of disciplines, specialties involved Knowledge, skills, experience of hospice staff Paediatric specialty support (24/7) Appropriate facilities and resources Specialist equipment

14 Can we do it? Vast experience in palliative care Compassionate and caring staff from a broad range of disciplines Strong community focus Holistic and inclusive model of care Funding and administration Community, day/out-patient and inpatient facilities 24/7 telephone advice and support MoU between New Zealand Hospices (via HNZ) and the Paediatric Palliative Care Clinical Network Yes We Can! - Hospices are already doing it HNA P2: 21 of 31 hospice services reported caring for children/young people (0-19) in 2011 (1% of all hospice patients, n=127) Several hospices have formal agreements/mous with DHBs to provide hospice palliative care support

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16 Care and support for children/young people, and their family/whānau, living with lifelimiting and life-threatening conditions through a MDT approach Support for children of adult hospice patients through grief, loss and bereavement

17 Rainbow Place model of care Part of the comprehensive Hospice Waikato community specialist palliative care service Children and young people aged 0 to 18 Child and family-centred care Paediatric trained and experienced staff Multidisciplinary team - whole of Hospice approach Collaborative decision-making between the child, family, DHB paediatric services, Starship Children s Health, and other health and social care providers

18 Rainbow Place model of care Care provided in preferred setting Care based on need and provided from the point of diagnosis, for as long as needed and into bereavement Care provided according to the developmental stage of the child Key Worker assigned to each child/young person IPU admission for respite, symptom control and end of life care 24/7 telephone support Transition to adult services

19 PC Medical Specialist Music Therapist Paediatrician General Practice Family Allied Health CYFs Comm. Nursing Teams Child / Young Person Whanau Child Dev. Centre Comm. Agencies School Starship Children s Health

20 Palliative care referral criteria The child/young person (patient): Has a life-limiting or life-threatening condition Has an extraordinary level of need Has New Zealand residency or has reciprocal rights, and is resident within the Hospice catchment area Agrees to the referral Is registered with a local primary healthcare provider

21 Putting the model into practice: Interdisciplinary Working Situation New referral for community support 3 month old baby boy Maori Background Severe hypoxic brain injury post pneumococcal meningitis, seizure disorder, multiple other medical conditions, including possible genetic disorder (Alagille syndrome) Lives with parents and siblings, supported by Grandmother and whanau

22 Putting the model into practice: Interdisciplinary Working Assessment Social and psychological support for family Specialist PC nursing support Symptom management CSCI via syringe driver End of life care at home

23 Putting the model into practice: Interdisciplinary Working Response Collaboration with DHB paediatric services and GP Rainbow Place Paediatric Nurses Family Services - Counsellors and Social Worker Hospice@Home nurses out of hours and on-call for CSCI and symptom management IPU nurses 24/7 telephone advice Bereavement support Mum, grandmother, siblings Healing Journeys

24 Putting the model into practice: End of Life Care Situation Referral from Princess Margaret Hospital, Australia for specialist PPC community support 8 month old baby girl Family returning to NZ Background Gauche Disease type II Neurological impairment, epilepsy, recurrent respiratory infections, impaired swallow NG feeding Lives with parents and sister (5)

25 Putting the model into practice: Assessment End of Life Care Mum, Dad, sibling, extended family all needing support Advanced care plan in place End of life care (in hospital at time of assessment) Parents wish for baby to die at hospice

26 Putting the model into practice: End of Life Care Response Communication with family members and professionals involved in New Zealand and Australia Hospital visits to meet baby and family to introduce RP services Care plans agreed and advance care plan obtained Medications ordered Transferred to Hospice IPU for last days of life care Ambulance transfer IPU Nurses prepared RP Nursing Team Leader and Nurse Educator involved with training Hospice SMO liaised with Lead Paediatrician Family supported with ongoing bereavement care

27 Is there a place for children s hospice Yes there is services in New Zealand? There is a need There is funding There are models of service delivery There are some challenges We just need to take the step to help and support these very special children, young people and their families

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29 References Caresearch Palliative Care Knowledge network. (2013). Paediatrics. 37/Default.aspx. Drake, R. (n.d.). Strategic Approach for Paediatric Palliative Care in New Zealand. Unpublished report. European Association of Palliative Care (EAPC). (2009) Taskforce for palliative care in children. Palliative care for infants, children and young people: The facts. Milan, EAPC. Guidance for Integrated Paediatric Palliative Care Services in New Zealand. (2012). Kirk, S., & Fraser, C. (2014). Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: A qualitative study. Palliative Medicine, 28(4), NHPCO. (2015). NHPCO s Facts and Figures: Pediatric Palliative and Hospice Care in America. Palliative Care Council of New Zealand. (2011). National Health Needs Assessment for Palliative care. Wellington, Palliative Care Council of New Zealand. Palliative Care Subcommittee, NZ Cancer Treatment Working Party. (2007). New Zealand Palliative Care: A Working Definition. WHO Definition of Palliative Care.