Pediatric Palliative Care Overview

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Information about Pediatric Palliative Care Overview

Published on October 21, 2008

Author: gallegr1


An Overview of Pediatric Palliative Care : An Overview of Pediatric Palliative Care Meeting the Needs of Children, Families, and Communities Who We Are : Who We Are The Jason Program Gary Allegretta – Medical Director Greg Burns, RN Shelley Jacobs, LCSW Kate Eastman, Program Director Leslie Morissette, Development Meg Distinti, Volunteer Coordinator Diana Hurd & Deb Collins – Office Management What is Palliative Care? : What is Palliative Care? Cure fundamental hope is eradication of disease to achieve longevity assumes cure is worth a sacrifice Palliation -- fundamental hope is comfort-- consequences of any intervention that relieves suffering are acceptable Family-Centered Care : Family-Centered Care What Do Families Need? : What Do Families Need? Compassionate Care Good Communications Pain and Symptom relief Coordination of Services Emotional Support Spiritual Support Acceptance of Culture The Fundamental Skills : The Fundamental Skills Medical Nursing Psychosocial Communication - Empathy is the Key : Communication - Empathy is the Key Why? -- How Does This Feel? - Empathy Video Empathy : Empathy The Empathetic Response This is the Primary Skill to Master Aspergoid……. The Empathic Response : The Empathic Response A verbal technique that acknowledges you have heard the patient’s emotional content. Why is this important? Validation Enlistment Compassion No requirement to feel the emotion. Identify the emotion Identify its cause Respond in a way that shows you understand the connection between emotion & its cause Simple word or two; gestures; touch* Bedside Context - Good : Bedside Context - Good Bedside Context - Bad : Bedside Context - Bad Identify This Skill : Identify This Skill Bedside Communication Video Educate : Educate Why - Compliance Exists in only50% of cases (Butler & Rollnick, 1996) Patient’s perceived need is the primary factor How – Assess Understanding Assume Questions – Why? Assure Understanding – How? Create Any Useful Plan of Action Pain Management : Pain Management Freedom From Pain: A Matter of Rights? T. Patrick Hill, M.A. Ca. Invest., 12 (4), 1994 Pain Isolates: “We are probably never more alone than when severe pain invades us.” Pain is Elusive: “Despite the fact that it is the result of biochemical processes, it is also ... a subjective experience, felt only within the confines of our individual minds.” A Matter of Attitude : A Matter of Attitude “The ravages of pain can reach beyond the body to the soul of the person, assaulting its very integrity.” There exists “ a principle on which rests the human right to be free of pain and the corresponding obligation of health-care professionals to honor it. All patients are vulnerable, but none is more vulnerable than the patient in severe pain. The measure of medicine in general and of a physician in particular is ultimately their respect for the patient’s right to be free of pain.” Barriers to Pain Control : Barriers to Pain Control ... “ the most pervasive and difficult to overcome relate to the fears among patients, families, and health professionals of opioid analgesics, which are the cornerstone of drug therapy for moderate to severe pain. These fears include an exaggerated estimation of opioid addiction and tolerance, fear of opioid side effects -- most notably respiratory depression -- and ethical and regulatory concerns about using opioids.” Weissman, David E. Home Health Care Consultant Vol. 2, No. 5, Sept. 1995 Treatment Principles : Treatment Principles Correctly Assess Degree and Cause of Pain Consider Psychosocial Factors Consider 24 hour Coverage Children Severe or Chronic Pain Patient- Controlled Analgesia Opioids Are Safe Respiratory Depression Overestimated Pharmacologic Dependence With Chronic Use Never use a placebo Pediatric Pain Assessment : Pediatric Pain Assessment Infant HR, Resp, BP fever, sweating Child Irritability, esp. paradoxical Refusal to walk or use a painful limb Functional changes (school, sports, etc.) May be able to use pain scale Adolescent Generally accurate reporter May be reluctant to participate Level I Medications : Level I Medications Acetaminophen 12 - 15 mg/kg, Q 4hr, PO or PR NSAIDs Ibuprofen 10 mg/kg, max 40mg/kg/day, Q 6hr, PO Ketorolac (variable efficacy) 0.5 mg/kg IV/IM, 5-10 mg PO, Q 6hr Cox 2 Inhibitors Vioxx, oral solution, 0.5 mg/kg QD (effective) Occasional sedation Celebrex has better GI safety profile Level II and III Medications : Level II and III Medications Pain Control Using Narcotics Principles of Narcotic Dosing : Principles of Narcotic Dosing The Right Dose is the Dose that Works Pain and the Reticular Activating System “The respiratory depressant effect of opioid agonists can be demonstrated easily in volunteer studies. When the dose of morphine is titrated against a patient’s pain, however, clinically important respiratory depression does not occur. This appears to be because pain acts as a physiological antagonist to the central depression effects of morphine.” Wall, R.D., ed. Textbook of Pain. Churchill Livingstone Enteral Narcotics : Enteral Narcotics Codeine 1 mg/kg, Q 2-4 hrs, PO Ineffective for age > ~10 years Hydrocodone (Lortab) 0.1 mg/kg PO q 2-4 hours (very good for moderate pain) Oxycodone 5 - 10 mg/ dose PO q 2-4 hours (Tylox) Tramadol (Ultram) 0.7 - 2.0 mg/kg/dose PO Q 4-6 hours (variable efficacy) Morphine (the gold standard) 0.3 mg/kg PO Q 2-4hr Morphine SR (MS Contin) 0.5 mg/kg, BID, PO (Do not crush) Methadone 0.7 mg/kg/day, BID-TID; Reassess q 4 days Parenteral Narcotics : Parenteral Narcotics Morphine 0.1 mg/kg IV bolus, Q 1-2hr .05 mg/ kg/hr, CI - IV or SQ Hydromorphone (Dilaudid) Approximately 6 times stronger than morphine Fentanyl Approximately 10 times stronger than morphine Wide dosing range 1-2 mcg/kg IV slow push 0.5-1.0 mcg/kg/hr, CI - IV or SQ Total hourly dose as a transderm patch Patient-Controlled Analgesia : Patient-Controlled Analgesia Patient age > about 4 years with supervision Home or Hospital Requires adequate observation Medication Base Rate Bolus Dose Lockout “Max”/Hr Morphine .03 mg/kg Same 6-10 min .15 mg/kg Dilaudid 5 mcg/kg Same 6-10 min 25 mcg/kg Fentanyl 1 mcg/kg Same 6-10 min 4 mcg/kg Equianalgesic Narcotic DosingSource : McCaffery M, Pasero C. PAIN : Clinical Manual, 2nd Edition, Harcort Health Sciences Website, 2000. : Equianalgesic Narcotic DosingSource : McCaffery M, Pasero C. PAIN : Clinical Manual, 2nd Edition, Harcort Health Sciences Website, 2000. Slide 28: Common Uncommon Constipation Bad dreams / hallucinations Dry mouth Dysphoria / delirium Nausea / vomiting Myoclonus / seizures Sedation Pruritus / urticaria Sweats Respiratory depression Urinary retention Opioid Side Effects Demerol is not recommended due to its side effects Addiction is NOT a side effect CNS Addiction : Addiction “…neurobehavioral syndrome with genetic & environmental influences that results in psychological dependence on the use of substances for their psychic effects.” ME Board of Licensure in Medicine Compulsive use Loss of control over drugs Loss of interest in pleasurable activities Continued use of drugs in spite of harm A rare outcome of pain management Pseudoaddiction : Pseudoaddiction “Pseudoaddiction” is a pattern of drug-seeking behavior of pain patients who are receiving inadequate pain management that can be mistaken for addiction. Department of Professional & Financial Regulation, Board of Licensure in Medicine, a joint chapter with the Board of Osteopathic Medicine, Chapter 11: Use of Controlled Substances for Treatment of Pain Substance Abusers : Substance Abusers Can have real pain Treat with compassion Create protocols and contracts Consider a consultation with pain or addiction specialists Adjunctive Pain Treatments : Adjunctive Pain Treatments Radiotherapy External beam or brachytherapy Bone Metastases : NSAIDs Hemibody XRT Radioisotopes Anesthetic Procedures Epidural anesthetics Nerve Block Neurosurgical Procedures Neurolysis Orthopedic Procedures Stabilization of pathologic fractures Complimentary Interventions : Complimentary Interventions Acupuncture Relaxation Therapy Spiritual Assistance Hypnosis / Biofeedback / Massage Art Therapy NIH Consensus Statement21 : NIH Consensus Statement21 “The introduction of acupuncture into the choice of treatment modalities that are readily available to the public is in its early stages. Issues of training, licensure, and reimbursement remain to be clarified. There is sufficient evidence, however, of acupuncture's value to expand its use into conventional medicine and to encourage further studies of its physiology and clinical value.” Neurologic Pain : Neurologic Pain Caused by diseased neurons Characterized as burning, tingling, electric Medications Amitryptiline, start at 25 mg PO HS and increase as tolerated to relief Neurontin, 1800 - 3600 mg/day div TID Narcotics are also useful – Methadone is an effective agent NMDA Blockers - High dose dextromethorphan Under investigation now @ ~ 400 mg/day Anxiety : Anxiety Non-Pharmacologic Compassionate Exploration of issues Alternative medical approaches Pharmacologic Benzodiazepenes - Choose by half-life Valium: 0.1 mg/kg IV or PO; rectal gel - 0.2-0.5 mg/kg Ativan: 0.05 mg/kg, PO, IV, or SL Versed: 0.05 mg/kg IV; 0.5 mg/kg PO Long Short Depression : Depression Risk Factors Poorly controlled pain Physical impairment Poor social supports Spiritual pain Symptoms Hopelessness Loss of self-esteem Helplessness Suicidal ideations Do you feel depressed most of the time? Medication Ritalin, 5-10 mg BID SSRI Breathlessness : Breathlessness Sense of drowning Medical Management Correct the underlying problem Oxygen Placebo vs. Cool Air? Opioids Anxiolytics Non-Medical Management Cool room with open window Relaxation, hypnosis, minimize loneliness Eliminate irritants When All Else Fails – : When All Else Fails – “Terminal Sedation” Barbiturates Pentobarbital 2 - 8 mg/ kg IV,PO, PR, IM, Q 1-4 hr prn Butyrophenones Droperidol 0.025 - 0.05 mg/ kg IV Q 4-6 hr prn Barbiturates in the Care of The Terminally Ill : Barbiturates in the Care of The Terminally Ill Barbiturates: Reliably produce sedation and unconsciousness (comfort) Are used in the execution of prisoners by lethal injection Ethical Considerations: “The Principle of Double Effect” -- Distinction between intended effects and unintended although foreseen effects. Truog, Robert D., et. al. NEJM, Vol. 327, No. 23, 1678-81 Barbiturates Are Justified : Barbiturates Are Justified To relieve physical suffering when all reasonable alternatives have failed To produce unconsciousness before terminal extubation Produce deep sedation and unconsciousness as a means of relieving nonphysical suffering Pain in Neonates : Pain in Neonates Consensus Statement for the Prevention and Management of Pain in the Newborn K. J. S. Anand, MBBS, DPhil; and the International Evidence-Based Group for Neonatal Pain Arch Pediatr Adolesc Med. 2001;155:173-180 Management of pain must be considered an important component of the health care provided to all neonates, regardless of their gestational age or severity of illness. : Management of pain must be considered an important component of the health care provided to all neonates, regardless of their gestational age or severity of illness. Conclusion Management of Pain : Management of Pain 1. Pain in newborns is often unrecognized and undertreated. Neonates do feel pain, and analgesia should be prescribed when indicated during their medical care. 2. If a procedure is painful in adults, it should be considered painful in newborns, even if they are preterm. 3. Newborns may experience a greater sensitivity to pain compared with older age groups and are more susceptible to the long-term effects of painful stimulation. 4. Adequate treatment of pain may be associated with decreased clinical complications and decreased mortality of neonatal pain. Continued : Continued 5. Environmental, behavioral, and pharmacological interventions can prevent, reduce, or eliminate neonatal pain. 6. Sedation does not provide pain relief and may mask the neonate’s response to pain. 7. Health care professionals have the responsibility for assessment, prevention, and management of pain in neonates. 8. Clinical units providing health care to newborns should develop written guidelines and protocols for the management Pediatric End of Life Care : Pediatric End of Life Care Perspectives for The Home Care Nurse Greg Burns RN, BSN The Jason Program Ground to be Covered : Ground to be Covered Nursing Roles in a Pediatric Palliative Care Team Self Inventory / Personal Tool Box Boundary Issues in Home Care Nursing Roles at End of Life : Nursing Roles at End of Life Anticipating—possible side effects or symptoms according to diagnosis Preventing—suffering through advanced care planning Treating—to reduce symptoms and suffering Promoting—opportunities between child/parents/siblings for living fully Advocacy—of child/family goals/preferences/desires Nursing Roles at End of Life : Nursing Roles at End of Life Medical Management Physical/Emotional Presence Educate/Be a resource (Knowledge is comfort. Ignorance is Fear.) Respite High-Tech Management Nursing Roles in a Pediatric Palliative Care Team : Nursing Roles in a Pediatric Palliative Care Team Block Time Home Nurse Direct Pt Care 4/8/12hr Blocks Medical Eyes and Ears of the Team Pt and Family Teaching Pt and Family Support At greatest risk for Boundary Issues Nursing Roles Cont……. : Nursing Roles Cont……. Home Health/Hospice Nurse Medical Eyes and Ears/Team Communication Pt and Family Assessment/Teaching Direct Care High Tech Support Coordination within the Home Health Agency of additional disciplines i.e.: HHA,OT ,PT, SW, Volunteers, Clergy Nursing Roles Cont…… : Nursing Roles Cont…… Care Coordinators/Managers Delegation/coordination of coverage. (Medical/Respite) Coordination of nursing and IDT meetings. (Education/Support/Bereavement) Staff Support Liaison between all involved parties Nursing Roles Cont…. : Nursing Roles Cont…. Palliative Care Nurse Home visits for pt and family assessment Education/support for the family Education/resource for the direct care team Coordinate multi-agency team meetings Work with discharge planning to meet needs of families bringing critically ill children home Common Goals : Common Goals Bring physical and emotional comfort Identification and planning around medical issues Help family identify their needs Foster Seamless Care Peaceful death with dignity Self Inventory/Personal Tool Box : Self Inventory/Personal Tool Box Identify what you can offer Strengths/Weaknesses Ask for Help Knowledge Strengths/Deficits Emotional Needs Potential barriers to professional, objective care Identify and use good stress relief strategies Identify Colleagues/Friends who may serve as outlets for feelings/frustrations Boundary Issues : Boundary Issues Honor above all Families Space Physical and Emotional Recognize potential problems Keep ego in check Rely on team members for advice and support Nursing Within the Dying Process : Nursing Within the Dying Process Identification of Needs Definition of roles Managing physical decline Equipment Management Identification of Needs : Identification of Needs Ideally an interdisciplinary function Prioritize needs Comfort should always be the priority After comfort, let the family set the agenda. DNR Wishes for time of death Cyclical Process Definition of Roles : Definition of Roles Establish a chain of communication within the palliative care team Be cognizant of patient and family needs and wishes Define all clinician roles for patient and family Allow family to define their roles Managing Physical Decline : Managing Physical Decline Neuromuscular Changed Mental Status Lethargy Somnolence Seizures/risk of Irritability/Agitation Weakness/Coordination Neuromuscular : Neuromuscular Assess LOC, pupils, Development/Regression, Willingness to play, Tolerance to touch, Seizure activity/ history Interventions Notice pattern changes from one visit to next Educate family Arrange schedule to allow for rest Have emergency seizure meds available Valium/Ativan Anxiety : Anxiety Assess Pain and related fears, respiratory status/air hunger, growth and development level. Interventions Consider pain med adjustments. Include use of Ativan or other antianxiolytic to facilitate relaxation. Respiratory : Respiratory Respiratory Distress, Wheezing, Gurgling, Accessory muscle use, Increased/Decreased rate, Patterned breathing Assess RR, Effort, Lung sounds, SOB, Activity/Play level Respiratory : Respiratory Interventions To dry secretions, Robuinol O2 Pros and Cons Suctioning oral secretions CPT Narcotic intervention (nebulized MSO4) Prepare/Educate family about normalcy of respiratory decline Circulatory : Circulatory Color/temperature change, increased/decreased HR, Edema Assess Cyanosis, VS, Changed levels of edema, Respiratory Status Interventions Adjust fluid intake, Repositioning Q2-4h, Teaching with regard to normal circ changes Nutrition : Nutrition Fluid overload, Dehydration, Decreased intake Assess Fluid intake, Mucous membranes, Dry skin, Tolerance of feeding, Taste change Interventions To hydrate/feed or not. Teaching and discussion, Support decisions, Be familiar with all equipment and teach accordingly Renal/Urinary Function : Renal/Urinary Function Decreased output, Incontinence Assess Number of voids/day, Color/odor, Skin rash/itching, Retention Interventions Prepare pt and family for decreased output and the possibility of incontinence Allow child to maintain dignity any way he/she chooses Skin Integrity : Skin Integrity Rash, Breakdown, Wound Assess Pressure areas, Incontinence, Wounds Interventions Practice Good skin care techniques, Teaching re. wound care GI : GI Nausea, Vomiting, Diarrhea, Constipation, Abdominal Distention Assess Intake, Nausea, Vomiting(amt./ freq), Bowel function, Abd. Girth Intervention Etiology of symptoms will determine intervention. (Zofran vs. Compazine) or (Pepcid vs. Reglan) Pediatric Pain and Symptom Management : Pediatric Pain and Symptom Management Active Medical Care Important Medically -Adequate symptom relief necessary -Maintain Dignity -Allow for the accomplishment of desired goals -A PROactive approach not a Reactive one Pediatric Pain Cont..... : Pediatric Pain Cont..... Active Medical Care Important Socially -Families need to know -Families need to plan and adapt -Feelings of security fostered -Feelings of abandonment eliminated Pain Management Principles : Pain Management Principles Correct, accurate assessment of the degree and cause. Consideration of psychosocial issues Always consider 24 hour coverage Opioids are safe Pediatric Pain Assessment : Pediatric Pain Assessment Remember to include cultural factors in every pain assessment Age /Development appropriate Pain Scales Attitudes and Emotional states will affect reporting Sensitivity to these factors is paramount Excellent Pain Control is the Right of Every Patient : Excellent Pain Control is the Right of Every Patient The final piece of a good assessment is dissemination of the information to the MD/Team Follow up with ordered interventions Be clear and comfortable with plan Be clear about the fluidity of any plan Equipment Management : Equipment Management Enteral/perenteral pumps O2 Vents Suction Monitors One basic premise prevails, Know Your Resources. Do not let your anxiety about equipment frighten pts or families Time Of Death : Time Of Death Let families choices and decisions guide. Remember to honor Sacred Space for families Honor all wishes possible with regard to personnel present Calls to MD/Team Have phone numbers readily available Try to have contact with the funeral home ahead of time and discuss family wishes with regard post mortem protocol Cont… : Cont… Give whatever time is needed Remove whatever medical equipment can be removed Family may want to do post mortem bath/care Follow Up : Follow Up Have a designated colleague/friend you can go to for support. Team Follow Up Extremely important for debriefing/sharing of feelings. Follow up with the family Funerals/Memorials Bereavement Words of truth…. : Words of truth…. “Although the world is full of suffering, it is also full of overcoming it.” -- Helen Keller “What greater pain could mortals have than this: to see their children dead” -- Euripides Next: Social Work

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