ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Making a Difference in Children’s Palliative Care... Francis Edwards Bristol Children's Hospital UK Making a difference – Well-coordinated services, well-informed families able to exercise real choice 1. What is paediatric palliative care? Scope of paediatric palliative care … What do we mean when we talk about children's palliative care? Who can good palliative care help? When does palliative care start? How do treatments aiming to cure or prolong life relate to palliative care? What are your concerns? Making a difference – Well-coordinated services, well-informed families able to exercise real choice 2 1 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Introducing palliative care… This should not be seen as nothing more can be done or come across as a sense of giving up… Palliative care is not a diagnosis or single intervention; it is a philosophy of care. It can be seen as a thread that weaves a thread through the lives of all children with a life limiting illness alongside active interventions and treatment… Making a difference – Well-coordinated services, well-informed families able to exercise real choice 3 1. What is paediatric palliative care? Active treatment Diagnosis Palliative care Curative treatment ceases Making a difference – Well-coordinated services, well-informed families able to exercise real choice Death 4 2 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 1. What is paediatric palliative care? Active treatment Palliative care Diagnosis Making a difference – Well-coordinated services, well-informed families able to exercise real choice Death 5 1. What is paediatric palliative care? Paediatric Palliative Care is care that maximises the comfort, wellbeing and quality of life of children with a life-limiting illness, and of their family and carers. It is very different to End-of-life care. Palliative care does not begin at the end of life but is involved from the time a child is diagnosed with a life-limiting illness. End-of-life care is the end stage of palliative care where the child is very close to death. Making a difference – Well-coordinated services, well-informed families able to exercise real choice 6 3 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 So what are we talking about… An active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement. (ACT 2009) Making a difference – Well-coordinated services, well-informed families able to exercise real choice 7 In short... Palliative care is a philosophy of care and not a location of care... Hospice is a place of rest and refreshment for pilgrims on a journey… Making a difference – Well-coordinated services, well-informed families able to exercise real choice 8 4 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 The aim of the work… The aim of the work is to leave families with what can only be described as a “good enough” memory of the life, dying and death of their child or in some cases children... 9 Making a difference – Well-coordinated services, well-informed families able to exercise real choice We do this by… Improving the quality of life providing relief from pain and other distressing symptoms supports life and regards dying as a normal process doesn’t quicken or postpone death combines psychological and spiritual aspects of care offers a support system to help children & families live as actively as possible until death offers a support system to help the family cope during a child’s illness and support in bereavement uses a team approach to address the needs of the child who is living with a life-limiting condition and their families also applies to the earlier stages of an illness, alongside other therapies that are aimed at prolonging life Making a difference – Well-coordinated services, well-informed families able to exercise real choice 10 5 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 2. Importance of team approach Who can provide palliative care? All of us have a responsibility to contribute to good quality care to the best of our abilities and resources Family Professional staff • Doctors • AHP’s • Nurses • Social workers • Family support team • Play specialist • Psychology staff and support • Spiritual care staff Making a difference – Well-coordinated services, well-informed families able to exercise real choice 11 Diagnosis/Recognition Every family should receive the disclosure of their child’s prognosis in a face-to-face discussion in privacy & should be treated with respect, honesty & sensitivity. Every C&F should have an agreed transfer plan involving the hospital, community services & the family, & should be provided with the resources they require before leaving hospital. Living with the Condition Every family should receive a multi-agency assessment of their needs ASAP after diagnosis or recognition, and should have their needs reviewed at appropriate intervals Every C&F should have a multi-agency care plan agreed with them for the delivery of co-ordinated care & support to meet their individual needs. A keyworker to assist with this should be identified End of Life Every child & family should be helped to decide on an end of life plan and should be provided with care & support to achieve this as closely as possible Making a difference – Well-coordinated services, well-informed families able to exercise real choice 12 6 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Some key points to consider... Care of critically ill children involves technical and value judgements Ethics support analysis and training for MDTs [and families] is important The child’s best interests should be the paramount criterion for decision making Palliative care is an ethical adjunct to LST and is part of the duty of care Changing goals of care is ethical, with valid consent Misplaced certainty is unethical, uncertainty is not Making a difference – Well-coordinated services, well-informed families able to exercise real choice 13 Some key points to consider... The goal of palliative care is to relieve the suffering of children and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by the child & the family. As death approaches, a child’s symptoms may require more aggressive palliation. As comfort measures intensify, so should the support provided to the dying child’s family. After the child’s death, palliative care focuses primarily on bereavement and support of the family. Making a difference – Well-coordinated services, well-informed families able to exercise real choice 14 7 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Key goals in planning for end of life care Professionals should be open and honest with families when the approach to end of life is recognised Joint planning with families and relevant professionals should take place as soon as possible A written plan of care should be agreed including decisions about methods of resuscitation; emergency services should be informed Care plans should be reviewed and altered to take account of changes Making a difference – Well-coordinated services, well-informed families able to exercise real choice 15 Key goals in planning for end of life care There should be 24-hour access to pain and symptom control including access to medication Those managing the control of symptoms should be suitably qualified and experienced Emotional and spiritual support should be available to the child and carers Children and families should be supported in their choices and goals for quality of life to the end Making a difference – Well-coordinated services, well-informed families able to exercise real choice 16 8 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Children who may need palliative care Conditions for which curative treatment is possible but may fail e.g. Cancer Diseases where premature death is inevitable but long periods of intensive treatment may prolong good quality life e.g. CF Progressive conditions where treatment is exclusively palliative from diagnosis e.g. Batten disease & muscular dystrophy Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death e.g. Severe cerebral palsy, brain or spinal cord injuries Making a difference – Well-coordinated services, well-informed families able to exercise real choice 17 Definitions… Life-limiting conditions Those for which there is no reasonable hope of cure and from which children will die Many of those conditions cause progressive deterioration, rendering the child increasingly dependent on parents and carers Life-threatening conditions Those for which curative treatment may be feasible but can fail, such as children with cancer. Children in long-term remission or following successful curative treatment are not included Making a difference – Well-coordinated services, well-informed families able to exercise real choice 18 9 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 The Multidisciplinary Team in Palliative Care A multidisciplinary team (MDT) is a group of healthcare professionals of varied disciplines and roles, working together towards a common goal of providing optimal care for a patient. Most areas of healthcare now work in multidisciplinary teams, but palliative care lends itself particularly well to this approach because of the multiple dimensions involved in caring for palliative patients: physical, social and psychological, and with close links to the family Making a difference – Well-coordinated services, well-informed families able to exercise real choice Physical Psychological 19 Spiritual Patient Social Advance care planning Respite care Family needs Bereavement support Quality of care Integration of care Symptom care planning 20 10 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 3. Making a difference MYTH Palliative care is what you do when you can’t think of anything else REALITY Palliative care is an active approach to care and can be offered as a positive choice Making a difference – Well-coordinated services, well-informed families able to exercise real choice 21 3. Making a difference MYTH The mainstay of palliative care is pain relief REALITY Palliative care includes symptom management, psychosocial support, spiritual and practical care Making a difference – Well-coordinated services, well-informed families able to exercise real choice 22 11 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 3. Making a difference MYTH Palliative can only begin when death is imminent REALITY Palliative care should always be part of the care of a child with life threatening illness Making a difference – Well-coordinated services, well-informed families able to exercise real choice 23 3. Making a difference Getting it right... Getting started What does the family know or suspect Give information at families pace Sharing the information Giving space Handling reactions Planning and follow up Making a difference – Well-coordinated services, well-informed families able to exercise real choice 24 12 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Getting it right... Making a difference – Well-coordinated services, well-informed families able to exercise real choice 25 Brief work...... Where to die? Can I take my child home? Who will look after us? What happens if things don’t work out at home? Can I keep my child at home after they have died? Making a difference – Well-coordinated services, well-informed families able to exercise real choice 26 13 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 3. Making a difference ‘Good enough memory’ for families and staff Empowerment Coordination Connections Networks Choices Having a vision for families and staff Creative thinking – waves and movements Making a difference – Well-coordinated services, well-informed families able to exercise real choice 27 Making a difference – Well-coordinated services, well-informed families able to exercise real choice 28 14 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Setting Standards (CQC) The Five key Questions that we ask of a service… Is the service safe? Is the service effective? Is the service caring? Is the service responsive Is the service being well-led? Making a difference – Well-coordinated services, well-informed families able to exercise real choice 29 4. The challenges of paediatric palliative care Research and data: • Who are we talking about? (definitions) • What data do we collect • What about changing disease trajectories? • How many children? Where are they? Who looks after them? When will they die? What do they need? Making a difference – Well-coordinated services, well-informed families able to exercise real choice 30 15 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Some more challenges • Education of professionals • Coordinated development of new services • Restricted Resources • Working across traditional/comfortable boundaries • Changing public views • Exploring the ethics of what we do Making a difference – Well-coordinated services, well-informed families able to exercise real choice 31 Interrelationships... Education Provision Care Standards Education commissioning Service Commissioning Service Provision Making a difference – Well-coordinated services, well-informed families able to exercise real choice 32 16 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 5. Conclusions: Opportunities • International cooperation (ICPCN; EAPC; WHO) • Antenatal palliative care – “the womb as a hospice” • Neonatal palliative care • Increased survival • More children, more young people • Increased awareness Making a difference – Well-coordinated services, well-informed families able to exercise real choice 33 Performance indicators (1) Planning Services Inclusion of palliative care in local health, education and social service plans Identified local lead paediatric clinician Multi agency strategic planning at CHP level, including respite and children’s hospice care Identified spend for children’s palliative care Delivering care Multidisciplinary care plans Key workers Making a difference – Well-coordinated services, well-informed families able to exercise real choice 34 17 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Performance indicators (2) 24 hour access to support and expertise Patient and family advocates Information to make choices Culturally sensitive services Range of respite care Model for transition to adult services Adult services in place Bereavement information and support Staff Communication skills Appropriate training and competence Support Making a difference – Well-coordinated services, well-informed families able to exercise real choice 35 5. Conclusions Care of critically ill children involves technical and value judgements Ethics support analysis and training for MDTs [and families] is important The child’s best interests should be the paramount criterion for decision making Palliative care is an ethical adjunct to LST and is part of the duty of care Changing goals of care is ethical, with valid consent Misplaced certainty is unethical, uncertainty is not Making a difference – Well-coordinated services, well-informed families able to exercise real choice 36 18 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 5. Conclusions: In summary • Children’s Palliative Care in the UK has been established since 1980’s and continues to develop – we have to become life long learners… • There has been considerable learning – make good use of it… • There are considerable challenges for the future – develop a clear joined up vision before you start… • International co-operation is a reality YOU have an amazing opportunity We have had visionary leaders in children’s palliative care Remember it takes passion, patience and perseverance to make a vision into reality Making a difference – Well-coordinated services, well-informed families able to exercise real choice 37 Message for Japan • There is an amazing opportunity to learn from what has gone on in the UK & Europe and not to make the same mistakes…. • People across the globe are generous in sharing their learning – so do use them… • International co-operation is a reality – links through the International Children’s Palliative Care Networks and the European Association of Palliative Care are good places to start Making a difference – Well-coordinated services, well-informed families able to exercise real choice 38 19 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Lets talk about Adam... Making a difference – Well-coordinated services, well-informed families able to exercise real choice 39 Making a difference… The service is being delivered to the child and family, and not them being delivered to the service Making a difference – Well-coordinated services, well-informed families able to exercise real choice 40 20 ファミリーハウス・フォーラム２０１６ （2016年8月7日開催） 講演I 「英国小児緩和ケアの今 ～英国小児ホスピスの歩んだ道と、日本への助言～」 ブリストルロイヤル子ども病院小児緩和ケアリエゾン 看護師 フランシス エドワーズ 【英語原文スライド】 Making a difference – Well-coordinated services, well-informed families able to exercise real choice 21
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