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Palliative Care for Infants, Children, Adolescents, and Their Families. Himelstein, Bruce P.. Journal of Palliative Medicine, Feb2006, Vol. 9 Issue 1,

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Presentation on theme: "Palliative Care for Infants, Children, Adolescents, and Their Families. Himelstein, Bruce P.. Journal of Palliative Medicine, Feb2006, Vol. 9 Issue 1,"— Presentation transcript:

1 Palliative Care for Infants, Children, Adolescents, and Their Families. Himelstein, Bruce P.. Journal of Palliative Medicine, Feb2006, Vol. 9 Issue 1, p163-181, 19p, 8 charts; DOI: 10.1089/jpm.2006.9.163; (AN 19493733) 指導: V.S. 黃勝堅醫師 報告: Intern 陳坤翰 SICU RESEARCH

2 INTRODUCTION ► PEDIATRIC PALLIATIVE CARE: not about dying, it ’ s about helping children and families to live to their fullest while facing complex medical conditions. ► Pediatric palliative care: an interdisciplinary practice ► Coordination of care: critical and a central function of a pediatric palliative care team ► Palliative care is different from hospice: early from diagonosis

3 Basic principles of pediatric palliative care ► Child-focused, family-oriented, and relationship- centered ► Relief of suffering and enhancing quality of life for the child and family ► Chronic, life-threatening, and terminal illnesses are eligible ► Child: unique individual; family: functional unit ► Not directed at shortening life ► Goal directed and consistent with the beliefs and values of the child and his or her caregivers

4 Basic principles of pediatric palliative care ► Interdisciplinary team: always available, provide continuity ► Most importance: child and caregivers in decision- making ► Facilitation and documentation of communication are critical tasks of the team ► Respite care and support: families and caregivers ► Bereavement care: provided for as long as needed ► Do-not-resuscitate orders should not be required ► Prognosis for short-term survival is not required

5 Who need palliative care? ► Lifeprolonging treatment is possible but may fail (ex: malignancy or severe heart disease) ► Long periods of intensive treatment (ex: HIV, cystic fibrosis, severe malformations) ► Progressive, treatment is exclusively palliative from diagnosis (ex: storage disorders, trisomy 13 or 18) ► Severe, nonprogressive disability (ex: CP, other brain injury and disease)

6 PAIN MANAGEMENT ► Subjective experience ► Unrelieved pain: medical emergency. ► Pain assessment: age and developmentally appropriate (Bieri modification of the Faces Scale ) ► Determine whether the child can or will take oral medication ► Dose adjustments: incomplete maturation of hepatic enzyme in neonates ► Methadone: attractive choice for long-acting opiate analgesia in children due to its long half life, low cost, and availability as a liquid (avoid oversedation)

7 PAIN MANAGEMENT ► Anticipation is critical in managing pain in children, don ’ t use ” PRN ” ► Oral or sublingual route is preferred ► Rectal and subcutaneous routes can also be used (personal preferences) ► Intramuscular injection: rare indicated ► Other choice: massage, physical therapy, music, imagery, deep breathing

8 NONPAIN SYMPTOMS MANAGEMENT ► Dyspnea: be a distressing symptom  Measurement: difficult  Treatment: underlying cause, oxygen, opiates, benzodiazepines. ► Nausea and vomiting:  Assessment: difficult, often confused with pain  Hypomotility: Metoclopramide  Centrally: Antihistamines, phenothiazines and butyrophenones  Ondansetron and granisetron are 5-HT3 antagonists indicated for post-operative or post-RT/CT  Acupuncture, psychological and TENS

9 NONPAIN SYMPTOMS MANAGEMENT ► Constipation: review of history and medication use (opiates or anticholinergics)  hard stools: mineral oil, lactulose, or docusate sodium  poor motility: peristalsis-stimulating agents such as senna or bisacodyl  Rectal laxatives such as glycerine suppositories, sodium docusate or sodium phosphate enemas ► Gastroesophageal reflux  Ranitidine or proton pump inhibitors

10 NONPAIN SYMPTOMS MANAGEMENT ► Anorexia and cachexia:  Megestrol acetate, corticosteroids and cannabinoids  be part of the normal dying process ► Pruritis: due to dry skin or medications (opiates)  moisturizers and emollients, corticosteroids or antihistamines  opiates shift to naloxone, nalmefene, or nalbuphine ► Bone marrow failure ► Urinary retention ► Fatigue ► Neurologic symptoms

11 ETHICS AND DECISION MAKING ► Goal directed and based on understanding of the illness and treatment or nontreatment for the child ’ s quality of life ► Earlier recognition of poor prognosis by parents: earlier discussion of hospice, better parent ratings of home care, earlier DNR orders, less use of cancer-specific therapies in the last month of life, and a better chance that both parent and physician would identify comfort as the primary therapeutic goal.

12 ETHICS AND DECISION MAKING ► Most often the physician was the first to raise the possibility of discontinuing life support ► Factors most highly associated with reported importance in guiding end-of-life decisions according to families included the child ’ s quality of life, chances of getting better, and pain and discomfort.

13 CARE BARRIERS ► Care fragmentation ► Miscommunication ( ↓ frequency of resource utilization and poorer patient outcomes ) ► Financial barriers ► Lack of provider education and research

14 PSYCHOSPIRITUAL ISSUES ► Knowledge about normal growth and development ► Begin to have a sense of the possibility of personal mortality by age 8 or 9 (change As early as 3 years of age) ► All children have a spiritual life, even in the absence of a religious framework ► The child ’ s life meaning to those he/she touches including family and friends, and hopes and dreams for the future ► A child ’ s hopes and dreams should never be broken, even if unrealistic to the health care team

15 PSYCHOSPIRITUAL ISSUES ► Most pastoral care providers said that empathic listening, praying with children and families, touch or other silent communication, and performing religious ritual were helpful in addressing these concerns (felt anxious, guilty, difficulty coping and asked about suffering) ► Three major barriers identified to providing spiritual care  inadequate training of health care providers  inadequate pastoral staffing  being called too late to be helpful

16 PSYCHOSPIRITUAL ISSUES ► Communication: talking about death unlike adult, by nonverbal means ► Many parents did not talk to their child about death, but most of them did not regret it (child knew, older children; religious parents) ► Parents who had not talked about death had a higher level of anxiety at follow-up ► So~ Parent should be told about death with their child

17 Grief ► Parent: the grief never truly goes away  Risk as well as possibly death  Poorer outcome ► Children also grieve (progressive isolation and multiple losses including normal function, ability to participate in school, contact with peer and faith communities) ► Siblings, classmates and other peers may also grieve ► Siblings require specific attention (lose family attention)


19 The future of pediatric palliative care will depend upon continued research, education and advocacy to improve care for the child with life-threatening conditions.

20 Thank you for your attention

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