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Palliative care for children
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Palliative care for children


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palliative care for children

palliative care for children

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  • 3. DOMAINS OF QUALITY PALLIATIVE CARE Domain 1: Structure and Processes of Care Domain 2: Physical Aspects of Care Domain 3: Psychological and Psychiatric Aspects of Care Domain 4: Social Aspects of Care Domain 5: Spiritual, Religious and Existential Aspects of Care Domain 6: Cultural Aspects of Care Domain 7: Care of the Imminently Dying Patient
  • 4. DOMAINS OF QUALITY PALLIATIVE CARE Domain 2: Physical Aspects of Care Symptom Control
  • 5. PAIN or DYSPNEA WHO 3-step Analgesic Ladder Step 1: Non-opioids Step 2: Weak Opioids Step 3: Strong Opioids Morphine  Neonates (<1 month) : 500microgram/kg/24hr 4 hrly divided doses  Infants: <1 yr = 500microgram/kg/24hr 4 hrly divided doses 1 – 2 yrs=1mg/kg/24hr 4 hrly divided doses  Children: 2-12yrs=1mg/kg/24hr 4 hrly divided doses >12 yrs=30mg/24hr 4 hrly divided doses orally, SL, PR, round the clock - Himelstein et al, N. Engl. J. Med, 2004
  • 6. Opioids for Palliation of Dyspnea The exact mechanism is unclear.  The drugs' cardiovascular effects are thought to be most likely responsible for relieving dyspnea.  Therapeutic doses of opioids:  produce peripheral vasodilation  reduce peripheral vascular resistance  inhibit baro receptor responses  decrease brainstem responsiveness to carbon dioxide (the primary mechanism of opioid induced respiratory depression)  lessen the reflex vasoconstriction caused by increased blood PCO2 levels so that the perception of dyspnea is reduced  Furthermore, opioids reduce the anxiety associated with dyspnea. 
  • 7. CONSTIPATION  Due to use of opioids MAINSTAYS OF THERAPY Stimulant (e.g. senna syrup)  Bisacodyl: 1 mo. – 2 yr 5 mg as single daily dose, oral or PR 2-12 yrs = 5 mg as single daily dose , oral or PR >12 yrs=10 mg as single daily dose , oral or PR Osmotic Laxatives  Lactulose: 1 mo. – 1 yr =2.5 ml/24 hr 12 hrly divided doses 1-2 yrs= 5 ml/24 hr 12 hrly divided doses 2-5 yrs = 5 ml/24 hr 12- hrly divided doses 5-12 yrs = 10 ml/24 hr 12- hrly divided doses >12 yrs = 20 ml/24 hr 12- hrly divided doses - Himelstein et al, N. Engl. J. Med, 2004
  • 8. NAUSEA  Prochlorperazine - 0.1 to 0.15 mg/KBW orally or PR q6-8h  Ondansetron for children 2-12 yrs: 0.15 mg/KBW orally or IV q6-8h PRN - Himelstein et al, N. Engl. J. Med, 2004
  • 9. AGITATION Lorazepam  Midazolam (SC) Children (1 mo - 12 yrs): 150 microgram/kg as a single loading dose; 1 mg/kg/24 hr continuous SC infusion  Haloperidol (oral, SC) Children (1 mo – 12 yrs) 25 microgram /kg/ 24 hr 12- hrly divided doses >12 yrs = 1 mg as single daily dose  - Himelstein et al, N. Engl. J. Med, 2004
  • 10. Pruritus Diphenhydramine Children 2-12 yrs: 5 mg/kg/day divided q4-6h IV/PO - Himelstein et al, N. Engl. J. Med, 2004
  • 11. Seizures Diazepam Infants (1 mo – 2 yrs): 200 microgram/kg/24hr, 12 hrly divided dose, oral 400 microgram/kg, IV, titrated Children 2-12 yrs = 1mg/24 once daily, oral >12yrs=3-5mg /24hr once daily, oral 2-12 yrs= 400 microgram/kg IV, titrated >12 yrs=5-10 mg IV, titrated  Maximum 10 mg as a single dose. Repeat after 5-10 mins if necessary. - Himelstein et al, N. Engl. J. Med, 2004
  • 12. Secretions Hyoscine butyl bromide (SC) Infant (1 mo – 2 yrs): 1.5 mg/kg/24 hr Children 2-5 yrs=15 mg/24 hr 6-12 yrs = 30 mg/24 hr q6h- q8h divided doses or as continuous SC infusion - Himelstein et al, N. Engl. J. Med, 2004
  • 13. Domain 5: Spiritual, Religious and Existential Aspects of Care DEVELOPMENT OF DEATH CONCEPTS & SPIRITUALITY IN CHILDREN >6-12 years old  Characteristics: Has concrete thoughts  Predominant concepts of death:     Development of adult concepts of death Understands that death can be personal Interested in physiology and details of death Spiritual Development    Faith concerns right and wrong May accept external interpretations as the truth Connects ritual with personal identity Himelstein et al, N. Engl. J. Med, 2004
  • 14. Domain 5: Spiritual, Religious and Existential Aspects of Care DEVELOPMENT OF DEATH CONCEPTS & SPIRITUALITY IN CHILDREN >6-12 years old  Interventions:       Evaluate child’s fear of abandonment Be truthful Provide concrete details if requested Support child’s efforts to achieve control and mastery Maintain access to peers Allow child to participate in decision-making Himelstein et al, N. Engl. J. Med, 2004
  • 15. Realities of Childhood Grief  Dying children know they are dying; adult denial is ineffective in the face of children’s emotional perceptiveness  Dying children experience fear, loneliness, & anxiety  Dying children worry, may try to put their affairs in order, may strive to protect their parents, & fear being forgotten  Dying children need honest answers and unconditional love and support Himelstein et al, N. Engl. J. Med, 2004
  • 16. COMMUNICATION  Communication skills    Appropriate and effective sharing of information, active listening Empathic and effective communication skills are essential Organized and effective procedure for communicating bad news with 6 steps goes by the acronym SPIKES
  • 17. SPIKES Protocol for Breaking the Bad News  Setting  Perception of the patient and/or family: Find out how much the patient and/or family knows  Invitation: Find out how much the patient wants to know  Knowledge: Share the information  Empathy  Strategy/Summary - Buckman RA, Community Oncology March/April 2005
  • 18. Advance Care Planning    Part of the standard of care involved in the care of patients with life-threatening conditions It is our responsibility to initiate these discussions, rather than wait for patients and family members to ask. These discussions should occur early and regularly throughout the course of treatment, ideally before crises arise, and as the goals of care are clarified or change over time. Decisions should be reviewed and revised on a regular basis as the medical condition and knowledge of treatment and prognosis evolve.
  • 19. Advance Care Planning   Clarification of wishes regarding emergency and lifesustaining therapies including CPR vs. DNR should be obtained and documented so that these advance directives can be communicated with others, such as home care workers and schools. Paediatric palliative care professionals should be involved early in discussions of treatment goals. Discussions about palliative care should take place well before the paediatric patient is at imminent risk of dying.
  • 20. Any life-sustaining treatment…  Resuscitation (CPR)  Diagnostic tests  Elective intubation,  Artificial nutrition, mechanical ventilation  Surgery  Dialysis, Hemofiltration  Blood transfusions, blood products (parenteral or enteral) or hydration (IVF)  Antibiotics  Vasopressors  Future hospital, ICU admissions …aimed at maintaining organ function that only prolong death may be withdrawn or withheld
  • 21. POPE JOHN PAUL II : Clarify the substantive moral difference between Discontinuing medical procedures that may be burdensome, dangerous, or disproportionate to the expected outcome > "the refusal of 'over-zealous' treatment" Taking away the proportionate means of preserving life, such as ordinary feeding, hydration, and normal medical care
  • 22. DOMAINS OF QUALITY PALLIATIVE CARE Domain 7: Care of the Imminently Dying Patient           Communication Site of care Resuscitation Nutrition and fluids Cessation of oral medications Adequacy of analgesia Management of distress & unrelieved symptoms Noisy breathing Care issues Duties after patient death
  • 23. Overview of Care of Patients Imminently Dying from Advanced Cancers  Learn to enjoy small accomplishments, and teach that skill to patients and their families.  It is not always possible to eradicate every symptom, but it is usually possible to bring some degree of relief.
  • 24. “There is nothing more that can be done” does not exist in the lexicon of palliative medicine There is always something that can be done, even if it is simply to sit beside the patient and hold her hand and offer a few words of comfort and solidarity.
  • 25. Recognition: “DIAGNOSIS OF DYING” Signs & Symptoms of Death Approaching  Profound tiredness and weakness      Reduced intake of food & fluids  Drowsy or reduced cognition Essentially bed bound Reduced interest in getting out of bed Needing assistance with all care Less interest in things happening around them      May be disoriented in time and place Difficulty concentrating Scarcely able to cooperate and converse with carers Gaunt appearance Difficulty swallowing oral medication Guidelines for managing the last days of life in adults. 2006. The National Council for Hospices and Specialist Palliative Care Services, London
  • 26. Care During the Last Days and Hours of Life  Patients in the last days of life typically experience extreme weakness and fatigue and become bedbound  “Death Rattle“ – noisy terminal respirations caused by the presence of secretions in the airway (usually the upper airway) in patients who are too weak to cough effectively  Hearing and touch
  • 27. Care During the Last Days and Hours of Life  Patient decides whether to be cared for and to die in the hospital, or at home   cardinal signs of death should be instructed to caregivers Physician should establish a plan for who the family or caregivers will contact when the patient is dying or has died  Avoiding unnecessary admission
  • 28. Care of the Imminently Dying Patient: Medications  Oral medications that are no longer necessary (e.g., laxatives, antibiotics) should be stopped.  Medications that are needed to control ongoing symptoms (e.g., pain, nausea, seizures) should be given rectally or parenterally .  When patients become anuric close to death, continuous dosing may be discontinued in favor of bolus dosing to prevent metabolite accumulation and agitated delirium. - Weinstein, Arnold & Weissman, Fast Fact and Concept #54: Opioid Infusions (
  • 29. Care of the Imminently Dying Patient: Nutrition & Hydration     During the last days of life, patients tend naturally to take in less and less food and fluid. Hunger is rare in the last days of life. Thirst occurs more commonly, but without relation to dehydration, and can usually be controlled by simple measures (e.g., moistening the lips, giving small sips of fluids or small amounts of crushed ice to suck). Enteral feeding should be stopped when the patient can no longer swallow reliably.
  • 30. Care of the Imminently Dying Patient: Hydration  In most cases, parenteral (IV) fluids should not be given in the last hours of life.  Allowing the patient to become slightly dehydrated may prevent or ameliorate many otherwise distressing problems in the last hours: Consequence of IV Hydration Symptoms ↑ Respiratory secretions Cough Pulmonary congestion Sensations of choking & drowning ↑ Urine Output Bedwetting, bedpans, catheters ↑ Gastrointestinal secretions Vomiting ↑ Total body water ↑ Edema, ascites, pleural effusions ↓ Serum urea ↑ Awareness ↑Distress, ↓Pain threshold
  • 31. Psychosocial Support of the Patient and the Family  In addition to anxiolytics, supportive counseling, spiritual counseling, and family support can help counter feelings of anxiety  At the moment of the patient’s death:   shock and loss and be emotionally distraught assimilate the event and be comforted
  • 32. Support of the Patient & His Family During the Agonal Period The nearer the patient approaches death, the more he reaches out towards life… Touch is often important, sitting close to him, holding his hand, staying near him even without words… All of these things make the chasm between the living and the dead less terrifying and lonely... - Hackett & Weisman, 1962
  • 33. TASKS OF THE MULTIDISCIPLINARY PALLIATIVE CARE TEAM 1) To see the patient & the family through - the physical & emotional stages of terminal illness 2) To ease their burden along the way - to walk alongside, not to give orders from above 3) To be there - when symptoms arise, when hard questions have - to be faced, when fear & loneliness threaten
  • 34. TASKS OF THE MULTIDISCIPLINARY PALLIATIVE CARE TEAM  To apply to the care of the dying the same high standards of clinical analysis & decisionmaking as are demanded in the care of patients expected to get well
  • 35. “Death is not extinguishing the light; it is putting out the lamp because the Dawn has come.” - Rabindranath Tagore