Bowie & Beyond: Tackling the challenge of transition for AYA with Palliative Care Needs

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1 Bowie & Beyond: Tackling the challenge of transition for AYA with Palliative Care Needs Gemma Aburn, Nurse Specialist Dr Emily Chang, Specialist Paediatrician Starship Palliative Care Dr Carol McAllum, Strategic Clinical Director, Integrated Palliative Care (Adult) Mercy Hospice/ADHB

2 TRANSITIONS Primary Care Paediatric Palliative Care Adult Palliative Care

3 Transition "A purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child centred to adult-oriented health care systems"

4 Challenge identified Two young men 16yrs Neuromuscular disease Actively engaged with PPC & Multiple Paediatric Specialist Services Where to next? Growing challenge.

5 Children & AYA with Palliative Care Needs Conditions in which intensive treatment can be expected to prolong & enhance life, but premature death is likely. Progressive conditions for which treatment is exclusively palliative from time of diagnosis. Non progressive conditions that result in increased susceptibility to complications and premature death

6 Increasing numbers of AYA England report Prevalence of life-threatening and life-limiting illnesses in young adults aged years prevalence increased from per 10,000 33% increase Fraser, L.F.K., Miller, M., Aldridge, J., McKinney, P.A. & Parslow, R.C. (2013) Prevalence of life-limiting and life-threatening conditions in young adults in England York: Department of Health Sciences, University of York. p189.

7 Non-Cancer Conditions Fraser, L.F.K., Miller, M., Aldridge, J., McKinney, P.A. & Parslow, R.C. (2013) Prevalence of life-limiting and life-threatening conditions in young adults in England York: Department of Health Sciences, University of York. p189.

8 Why have a Transition Process? Difficult time for AYA & families Abrupt transition Often dictated by rigid age boundaries No equivalent adult service Eligibility for services Disruption to care plans and continuing care AYA not involved in process

9 Consequences Poor attendance Preventable deaths in congenital heart disease High renal transplant failure rate Kennedy A, Sloman F, Douglass J, Sawyer S. Young people with chronic illness: the approach to transition. Internal medicine journal 2007;37:

10 Palliative Care Confusion for AYA & family re services available Lack of engagement with adult services Distress for AYA & family navigating complex health systems Gaps in clinical care Inconsistent quality of transition

11 Goals of Transition Provide high quality, co-ordinated, uninterrupted health care that is patient-centred, age and developmentally appropriate and culturally competent, flexible, responsive and comprehensive with respect to all persons involved. Promote skills in communication, decision-making, assertiveness and self-care, self-determination and selfadvocacy.

12 Enhance the young person's sense of control and independence. Provide support and guidance for the parent/carer of the young person. To maximise life long functioning and potential. Chambers, L. (2015) Stepping Up. Together for Short Lives; Bristol.

13 Rethinking independence Interdependence Put aside dichotomous images of children, young people and their parents Young people are not simply powerless and dependent Parents are not simply dominating and controlling (Bluebond-Langer, 2018)

14 Interdependence Consider how AYA & their family think things should go. Does the AYA want to be seen alone? Who makes decisions about care? How are these decisions made?

15 Key elements of an effective transition programme Written policy or guideline Individualised preparation Needs of parents/carers addressed Coordinated transition process with key contacts Interested & Capable Adult Service Primary Health Care Involvement

16 2015 Awareness AYA surviving longer Transition currently ad hoc Starship Palliative Care: 2-3 adolescents per year Numbers likely to grow Professionals trying to do their best to support AYA & their families. Gaps identified

17 Transition Working Group Specialty Name Position Organisation Paediatric Palliative Care Gemma Aburn Nurse Specialist Starship Palliative Care Emily Chang PPC Specialist Starship Palliative Care Adult Palliative Care Claire May Nurse Specialist - POI Harbour Hospice Ruth Choi Social Worker Hospice West Auckland Emma Hedgecock James Jap Carol McAllum Nurse Practitioner Intern Clinical Director/Palliative Care Specialist Strategic Clinical Director Integrated Palliative care Hospice West Auckland Totara Hospice Adult Palliative Care, ADHB/Mercy Hospice

18 Specialty Name Position Organisation Adult Palliative Care Meenu Haydn Nurse Specialist Hospital Palliative Care, ADHB Catherine Spence Social Care Manager Hospice West Auckland ** Primary Care Barnett Bond Director Primary Care Jim Kriechbaum Director Primary Care Child Health ADHB Adult Community & Long Term Conditions ADHB **Resigned

19 First Challenge Differing referral criteria Differing models of care Different group of patients Majority don t meet criteria for hospice care Small population

20 Importance of Primary Care Patients often disconnected from Primary Care Primary Care key care coordinators in Adult services.

21 Development of the Guidance Document Recommendations adapted for Auckland setting Consultation & Feedback reviewed Guideline undergoing review & changes currently Endorsement by Metro Auckland Clinical Governance Forum Primary Care November 2018

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23 Phase 1 Preparing for Adulthood & Planning Transition to Adult GOALS Services Using person centred planning approach in partnership with AYA & whanau Identify & Contact key transition services Planning for transition takes place First multiagency MDT Meeting takes place Strengthening of primary care/gp involvement

24 Interventions AYA needs & goals at the centre of the transition process Individual care plan, summary letter & ACP developed to share with services Key contact for both Paed & Adult services identified Referral made to Adult Palliative Care services as appropriate

25 Phase 2 Preparing to Step Up to Adult Services GOALS AYA supported in proactive future planning & development of partnership with Adult Services AYA supported to develop or update ACP All family including siblings to be supported and included in decision making in consultation with AYA

26 INTERVENTIONS Utilise transition checklists Introduction to adult services Joint visits with PPC & Adult services including primary care Assist AYA to develop or update ACP Establish decision maker in the whanau

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29 GOALS Phase 3 Settling in to Adult Services Care & support coordinated for AYA & whanau Provide single clinical overview of palliative care needs and link with other services Frequent review and communication across services

30 INTERVENTIONS AYA has key contact in primary & palliative care Ensure access to 24/7 services including local ED, GP, specialist palliative care services Regular review of ACP & crisis plans in partnership with AYA/whanau, to be distributed to all services involved Effective communication across services.

31 AYA & Family Feedback My GP is a good guy but he doesn t know about my pain When you re in pain waiting is hard

32 Primary Care Feedback Being left out of the loop Fear of the unknown How will I deal with this? Where can I get help or resources around caring for AYA with Palliative Care needs?

33 Feedback Need for up skilling & resources around caring for AYA Bigger group of AYA in adult services Guideline seen as really useful to support AYA & Family transitioning

34 Where to next? Finalise Guideline Dissemination Guide for PPC, Adult Pall Care & Primary Care to refer to Resource hub for Adolescents with Palliative Care Needs

35 Discussion/Questions??