Kaupapa. Model of Care The Case Ethics Outcomes

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2 Paediatric Palliative Care and Culture. Sharon Franks Ngati Whatua Nga Puhi He Kamaka Oranga Provider Arm Auckland District Health Board Jess Jamieson Senior Social Worker Paediatric Palliative Care Starship Children s Health.

3 Acknowledgements Naida Glavish Chief Advisor, Tikanga, ADHB. Julia Kiro Senior Social Worker, Te Puna Hauora, Te Raki Pae Whenua Harry Te Maro (former) Chaplain, ADHB He Kamaka Oranga Provider Arm Paediatric Palliative Care Team, Starship Children s Health. The Whanau

4 Kaupapa Model of Care The Case Ethics Outcomes

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6 Te Whare Tapa Wha Taha Hinengaro Mind Taha Wairua Spirit Taha Tinana Body Taha Whanau Family Each person s physical and mental wellbeing are influenced by his/her spirit and the social interaction within the family. In the following of customary practices and rites we strengthen the four elements which bring the sick person back to health. If restored health cannot be attained, then the four elements are again brought into play so that the whanau can support their family member through death and dying.

7 Tumanako - Hope The Hope affirmed by palliative care is different; it accepts the truth and its promise is not for longer life or recovery, but for comfort, presence, acceptance and love. Ian Maddocks, 1990

8 Raranga Tuhono - Weaving Taha Whanau Taha Tinana Love Comfort To have love To have To have choices physical care To still have To be treated hopes and goals with honesty Taha Hinengaro CHILD To have Acceptance peace To have communication To be able to use the remaining time To be able to express emotion To still be me Taha Wairua Presence To have dignity Goldman, Jamieson and Kiro,2004.

9 The Waiata of Hemi. Case Presentation

10 Hemi Mokopuna Born Dec/98 Parents: Hone and Hariata Sisters: Jane (aged 6) and Lynn (aged 2) Paternal Grandparents and Whanau in Auckland. Marae in Northern New Zealand. Maternal Grandparents in Australia, Maternal Aunt and extended Whanau in Auckland. Marae in Taranaki. Paternal Grandparents actively involved in day-to- day care of children.

11 Medical Background Medical history and diagnosis. August, 2003, diagnosed with Metastatic (M3) Medulloblastoma extremely poor prognosis. Whanau met at time of admission by Kai Atawhai staff and Chaplain.

12 First Hui September, Present: Whanau, immediate and extended. Multi-disciplinary team members: medical teams Chaplain, Kai Atawhai, CCF worker, PPC Social Worker. Whakawhanaungatanga / Connections links. Karakia and honour given to child s name and to the place that his name connects him to. Tensions obvious.

13 Options Palliative Care symptom management and comfort care. Palliative Care Treatment involving steroids, radiotherapy and lower-level level chemotherapy to gain time and some quality of life. Full curative option Major, severe, and very debilitating treatment. Less than 30% survival chance. Significant long-term physical and developmental impairment.

14 Second Hui Maternal grandmother present They can t live together, they can t live apart. Concerns for mokopuna Physically safe, but queried emotional/psychological safety Verbal violence, emotional/psychological violence towards Hariata Whanau wanted Hemi to stay in hospital for duration of treatment

15 The Decision Palliative care with radiotherapy, steroid treatment and lower level chemotherapy to gain time and some quality of life.

16 Multi-Disciplinary Teams The teams that stood behind Hemi His whanau / hapu/ iwi particularly his paternal whanau Starship Hospital primary and specialist teams Community GP, community nurse, school, church Link / PPC social worker, Kai Atawhai and Chaplain, PPC nurse consultant, Child Cancer Foundation The Promise

17 First Outcomes Hone and children to move back to paternal grandparents home Hariata to remain in her home by herself Hone to continue informal custody of the children SW to assist in getting Hone a home PPC SW, Kaiatawhai and Chaplain to follow family through hospital treatment and community Chaplain to access Maori community support

18 Our Challenge To keep Hariata safe and actively involved with children To check child protection register. Family not known To find extra financial and practical assistance (e.g. transport and food) To support this child and family through palliative and then terminal care To ensure cultural safety

19 Identified Problems Terminally ill son Stress / Distress History of domestic violence Poverty Query mental health of both parents Query drug and alcohol use Housing (Hariata s refuge) Parenting skills ( I take off ) Care and protection for Hemi and his sisters

20 Identified Strengths Love of children and strong relationships with them Huge will to do the best they could Some insight into personal problems Compliance Whanau support (particularly paternal) Wairua Koro and Mokopuna Child Cancer Foundation and community support Respect Kai Atawhai and Chaplain Hospital and home link

21 Ongoing Professionals meeting Whanau Hui Referral to Child Protection Team Referral to CYFS Chaplain s network/maori community support Delay in referral outcome Increased volatility of relationship Whakapapa/Lineage Temporary agreement/whanau arrangement

22 Law v Lore Care and Protection/Domestic Violence Mandatory reporting policy of agency Terminally ill child Child Whanau/Family Hapu/Sub-tribe/closer whanau connections Iwi/Tribe/Larger affiliation with Whenua/Land connection

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24 Finding a Way Through Ethics. NZ Association of Social Workers. Bicultural Code of Practice. 1.2 Social workers are expected to work in ways that recognise the independence of the whanau and its members, by empowering the whanau and its members to handle their own lives and living conditions, and by enabling them to take care of themselves and to develop autonomously and collectively,

25 Ethics NZASW cont 7.1- social work organisations and agencies and social workers should acknowledge and support the whanau as the primary source of care and nurturing of its members.

26 Ethics NZASW cont 7.2- SWs should promote recognition of the right of the whanau and its members to make their own decisions, and to ensure that self determination occurs when it is within their power to do so.

27 Ethics NZASW cont 7.2 They should work towards minimising legal and other forms of compulsion that impose monocultural solutions to Maori issues and problems.

28 Tika and Pono Tika Mana Maori Motuhake in its purest form Broken, there is no return Pono Raw Truth Honesty,, Intent, Integrity Kia u ki te tika me te pono If you act on that principle you will be able to live in your skin

29 Courageous Advocacy That in keeping an open, honest and committed relationship with the family, ongoing domestic violence and emotional/psychological abuse could be addressed after the death of the child Would enable transfer to follow-up agencies

30 The Heart of the Matter To support both parents to do the hardest job a parent can ever do, to hold their child through a terminal illness To maintain a supportive relationship so that this child s palliative care needs could be met

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32 The Waiata of Hemi Te Mate. Easter Home visit the day before Hemi died Chaplain, Kai Atawhai and SW as well as community nurse Died peacefully at home in parent s bed, surrounded by his whanau Attendance at Tangihanga Visit to Urupa Continuing bonds

33 Core Concepts Wairua Koro, What is Wairua? The child asked, eyes wide. Wairua,, my moko, is what gives us life. Handed down to us from a time past. At the moment of your beginning, you shared with me the Wairua of our Tipuna. For I am your link with the past And you are my link with the future. The aroha of the whanau has Wairua And their words, their laughter, their tears

34 Core Concepts - Wairua The marae tangi, waiata and whakapapa, have a Wairua that strengthens us and gives us pride. So too the sunrise and the sunset, The soft summer rain, the raging storm, The song of the birds in the trees, The waves on the beach, The mist rising from the bush, the moonlight on the water And the embracing darkness of the night. To sit quietly in the wharenui or the urupa And feel the presence of your Tipuna is to feel Wairua. Your arms about my neck and your breath on my cheek. Fills me with a special Wairua.

35 Core Concepts - Wairua For there is Wairua in all things that give meaning to life, to love and to the future. So moko, open your mind. Let your heart love, your eyes see, your ears hear and your hands feel. Give of yourself, my moko. For in giving, you receive, and so the Wairua grows.

36 Mokopuna The Face of the Tipuna He aha te mea nui o te ao He mokopuna He mokopuna He mokopuna

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