Session 1. Learning outcomes. Why we need children s palliative care. Why we need children s palliative care (2)

Transcription

1 Session 1 An introduction to children s palliative care, and who needs CPC Learning outcomes By the end of the session participants should: Understand the core principles of children s palliative care as expressed in the WHO and Together for Short Lives (previously ACT) definitions of palliative care for children. Be able to identify the differences between adult and children s palliative care. Be able to identify different categories of diagnoses of children requiring palliative care. 2 Why we need children s palliative care Estimated global number of children needing palliative care is >7 million Greatest number died from perinatal conditions (67.7%) 5% of these children are in Europe (the greatest in the South East Asian Region) 97% of children needing palliative care at the end of live belong to low and middle income groups (WPCA 2013) Why we need children s palliative care (2) 3 4 (WPCA 2013) Global need for CPC Total Need: Million Specialist Need: Million per 10,000 children What is the status of children s palliative care in Europe? Range 21 - >100 per 10,000 children Important not based on mortality figures (Connor et al 2017) 5 6 1

2 Even where cure is theoretically possible, it is often not realistic owing to: Uneven distribution of services Children presenting late Expense Awareness Technical skills and expertise Therefore children s palliative care is even more important What is a Child? What is Palliative Care? Brainstorm 7 8 What is a child? From the perinatal period Neonates Infants School aged children Adolescents Young adults Upper Age? 10/12/17/18/27/32/? 10 What is Palliative Care? The word palliate comes from the Latin word pallium which means cloak. Symptoms are cloaked with treatments whose primary aim is to provide comfort even if cure is not possible. May you be wrapped in tenderness my brother, as if in a cloak the Qur'an WHO definition of palliative care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual

3 Palliative care Palliative care cont Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; Will enhance quality of life, and may also positively influence the course of illness; Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. Provides relief from pain and other distressing symptoms; Affirms life and regards dying as a normal process; Intends neither to hasten or postpone death; Integrates the psychological and spiritual aspects of patient care; Offers a support system to help patients live as actively as possible until death; What is children s palliative care? 15 It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment Modified integrated palliative care services model (Frager, 1997) directed at the disease. DIAGNOSIS PALLIATIVE INTENT ACTIVE AGGRESSIVE INTENT BEREAVEMENT 17 DIAGNOSIS PALLIATIVE INTENT DEATH ACTIVE AGGRESSIVE INTENT DEATH Traditional palliative care services model BEREAVEMENT 18 3

4 Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited (Hawley 2014) It can be provided in tertiary care facilities, in community health centres The Together for Short Lives definition adds and even in the child s [own] home. 22 What are the differences between children s and adult palliative care? It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through disease, death and bereavement. Discuss

5 Some unique characteristics of paediatric palliative care Children are not small adults. They think and behave differently to the way that adults do. Children are developing and maturing all the time so each child will be at a different age and different stage of development. 25 Things to consider when working with children. So one size does not fit all! 27 Communication with children changes as they mature and develop Children s understanding of death and dying differs according to age and developmental stage Ethical dilemmas may be different and more difficult Families of dying children have different social roles Experiences of bereavement change with age Subtly different challenges face professionals dealing with dying children Children tend to have a broader range of people involved in their care 28 Medications and dosages are more complex in children. Children have more complex and diverse illnesses and diseases

6 Spectrum of diseases.. Other differences include: Unusual syndromes Congenital conditions Metabolic conditions Genetic diseases 31 Some conditions may last for several years Symptoms present differently in children Symptom assessment may be difficult in pre-verbal children Children are dependent on adults for care and decision making Family interactions can be complex 32 Other differences (2) Children can be cruel to one another Children have educational needs and also have the right to be given the time and opportunity for play and recreation Depending on their age, developmental stage and experience, children have different perceptions of illness and death and dying. CPC can be more emotionally draining than adult palliative care in childhood is not seen as normal 33 The overlap between adult and children s palliative care CPC APC

7 What conditions are encompassed in children s palliative care? Disease Classification A proposed grouping system for life limiting and lifethreatening illnesses of childhood that would benefit from palliative care Similar diseases grouped together Grouping is largely based on different disease trajectories (pathways) which helps with care planning 38 Category 1 Child with Leukaemia Advanced or progressive cancer or cancer with a reasonable prognosis Irreversible organ failures of heart, liver, kidneys Complex and acquired heart disease Severe malnutrition Pulmonary TB XDR and MDR TB 40 Head injury post MVA Category I disease trajectory Category I Category3 Remission Remission Relapse Treatment Treatment Treatment Time 41 Time 42 7

8 Category 2 Cystic fibrosis Duchenne s Muscular Dystrophy HIV / AIDS infected on HAART Biliary Atresia Neuro-degenerative conditions Renal failure where dialysis is available Category 2 disease trajectory Treatment Complications Child with AIDS 43 Time 44 Child with an inborn error of metabolism Category 3 Batten disease Mucopolysaccharidoses Down s Syndrome with severe congenital heart disease Adrenoleukodystrophy (ALD) Trisomy 13 and 18 Renal Failure - no dialysis available Irreversible organ failure no possibility of a transplant 45 Category 3 disease trajectory Time 46 Child with Cerebral Palsy Category 4 Multiple disabilities such as following a brain or spinal cord injury Complex health care needs and a high risk of an unpredictable lifethreatening event or episode Severe Cerebral Palsy Foetal Alcohol Syndrome Birth Asphyxia Down s Syndrome Sickle Cell Anaemia 47 Category 4 disease trajectory Time 48 8

9 Progressing Time Complications Demands of adolescence 49 Key concepts around the disease categories Categorisation helps to make decisions on how aggressive active disease focused treatment should be (dependant on resources) Category I: chance of cure: may be quite aggressive, may include ICU admissions (up to a point when Rx fails) Category 2: chance of reasonable QOL: usually aggressive as long as QOL is reasonable and not adversely affected by intervention. Category 3: no known cure, available treatments may be experimental, focus usually more on palliative care Category 4: non-progressive but life limiting: focus on rehab and maximizing potential thereby improving QOL 50 KEY concepts (2) Categorisation differs according to available resources for example: HIV: HAART available = Category 2 HAART not available = Category 3 Renal failure: Renal transplant = Category I Dialysis available = Category 2 No Rx available = Category 3 KEY concepts (3) Categorisation can change as disease progresses or complications arise or with associated co-morbidities: Acute Lymphoblastic Leukaemia In remission: Category I Non-curable relapse: Category 3 Downs Syndrome Normal Heart: Category 4 Congenital heart disease not for surgery: Category Challenges to CPC development Lack of policies Lack of recognition of the need for CPC Lack of integration for all ages Lack of access to education Lack of access to medicines Lack of resources 53 Summary 1. There is a need for palliative care for children 2. Palliative care for children should be provided from diagnosis right through to death and into bereavement. 3. It is about holistic care, and focuses on quality of life. 4. Children s palliative care is a developing area 5. The types of children seen is important issues to consider when thinking about providing children s palliative care. 54 9

10 Thank you 55 10