Integrated Comfort Care Pathway (ICCP) - Newborn*

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Derek Brooks
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1 Integrated Comfort Care Pathway (ICCP) - Newborn* Parent name & contact details.. Relationship to newborn Parental responsibility Parent name & contact details.. Relationship to newborn Parental responsibility Named consultant..date started on ICCP. Reason for starting on ICCP (BAPM criteria 1-5) Date ICCP discontinued/ transferred/ deceased. Key worker (1) & contact details.. Key worker (2) & contact details.. The ICCP may be used in conjunction with the medical/nursing notes OR if agreed by the Hospital Trust, instead of medical/nursing notes. This pathway will be initiated when all 3 of these are agreed: i) The multi-professional team have agreed that escalation of care is not in the newborn s best interest ii) The family, nursing staff and the medical consultant have discussed the newborn s clinical condition and the implications for care of the newborn in being places on this pathway iii) The discussion is clearly documented in the medical notes Every attempt must be made to reach a joint decision in the best interests of the newborn Parents must be given Making critical care decisions for your baby (Bliss 2010) If parents do not speak English an independent interpreter must be used for discussions Parents & staff completing part A or the initial assessment must sign below Print Name Position Signature Initials Date Parent Parent Consultant Key worker Key worker Interpreter *A newborn is any baby on a neonatal unit Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 1

2 A. Antenatal Care (this section will only be completed if a decision is made antenatally for palliative care) Section 1 - Diagnosis Diagnosis: Details of diagnosis USS (confirmed by fetal medicine consultant) Suspected/ Proven (circle applicable) CVS/Amniocentesis/ Cordocentesis MRI Detailed cardiac scan Other If prognosis is uncertain the decision about baby s care can only be taken after birth. As active rather than palliative care could be appropriate parents who are certain they cannot cope with a disabled child may wish to have a termination. Section 2- Multi-disciplinary meeting Has MDT meeting been held Date: Persons present: Fetal medicine consultant/ obstetrician: Other: Fetal medicine midwife: Neonatal consultant: Who is the named co-ordinator for the care plan? Contact details.. Are all members in agreement with diagnosis & prognosis (details) Has mother s antenatal & intrapartum care been documented in her notes? (details) Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 2

3 Section 3- Discussion with Family Has the MDT meeting been discussed with the family Have the following been discussed (details): Place of delivery Signature Date Persons present at delivery Care to be provided at delivery Place for baby after delivery Support for baby Post natal investigations (if any) Post-mortem examination and decision (including biopsy of specific organs) Section 4 Parallel Planning Parallel planning (i.e. what happens if the newborn s condition changes during the pregnancy or after birth) must be discussed with the parents and plans discussed about what to do in such a situation (details below): A written summary of all discussions must be sent to parents and all professionals involved Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 3

4 Diagnosis B. Postnatal Care Section 1- Initial Assessment Complete this assessment with parents if possible Current Problems Communication Goal 1: Ability of the family to communicate in English Mother able to communicate in english Father able to communicate in english Insight/ understanding Religious/ Spiritual support Psychological support If N document conversations with family using interpreter Goal 2: Does the family understand the baby s condition? Mother express understanding of the baby s condition Father express understanding of the baby s condition Does the family understand the plan of care? Goal 3: Religious/ spiritual needs of family assessed Formal religion identified Has chaplaincy/ religious leader been contacted Has baby been christened/ blessed in the family religion In house support: Name. Tel/ Bleep no External support: Name.. Tel/ Bleep no Special needs now, at time of & after death identified? (Please state). Goal 4: Psychological needs of the family assessed Unit counsellor notified (if available) /NA Family aware of name and contact details of counsellor /NA Children in the family may require special support Written information offered (e.g. ACT, ARC, Bliss, Sands, Contact a Family, PALS) Has the family been given the option to start a journey/ memory box (handprints, footprints, photographs, diary etc) Names & ages of siblings.. Has specific support for siblings been offered Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 4

5 Comfort Measures Goal 5: Assess current medications Non-essentials discontinued Goal 6: Write up medication for symptoms regularly or as required: Analgesia (see Appendix B) (dia)morphine iv Oromorph oral Agitation o Midazolam iv/ subcut/ buccal/ intranasal o Triclofos oral o Chloral hydrate oral Respiratory secretions Hyoscine patch Glycopyrronium Constipation Lactulose Glycerine suppository Other (name) Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 5 Goal 7: Discontinue inappropriate interventions Specifically: Routine blood gases (if not discontinued specify time interval) Blood glucose measurements Blood tests for biochemistry or haematology Nursing observations/ monitoring (except those associated with comfort care provision) Other Goal 8: Assess nutrition Offer fluids Oral care if no fluids taken orally Consider decreasing feed volume if vomiting Consider anti-reflux treatment if symptomatic Goal 9. Assess ability to thermoregulate Consider appropriate temperature management for an infant that is compromised in order to promote comfort: Kangaroo care Consider appropriateness to continue incubator care between skin to skin contacts (discuss with parents) Consider heat pad in cot Dress infant however do not over dress (compromises freedom of movement); alter room or incubator temperatures according to need Remove clothing / covers appropriately during hyperthermic episodes Goal 10. Asses Hygiene needs Frequency of bathing, consider swaddle bathing Frequency of nappy changes Frequency eye care (if infant unconscious may need lubricating eye drops /permagel) Goal 11. Establish a balance between human contact and the need for sleep rest and family solitude Encourage physical contact with parents and siblings establish preferences Promote Kangaroo care Preserve sufficient rest

6 Control potential environmental disturbances (noise, light, comfortable positioning and bedding) Plan nursing and medical interventions around infant s / family s routine and adjust plans accordingly Goal 12. Establish parents preferences regarding timetable and care planning / Generate memories Discuss needs with parents / parents in control Promote parental presence & offer accommodation to stay Explain the potential value of Still or video photography to family Enable family to capture memories Goal 13: Establish limits to resuscitative care Specifically: If signs of sepsis for septic screen & iv antibiotics? If signs of sepsis for iv antibiotics without septic screen? If signs of sepsis for oral antibiotics? If signs of sepsis & painful (e.g.otitis media) for iv antibiotics? For a change of endotracheal tube if necessary? For reintubation if extubated? If apnoeic, for positive pressure ventilation? For cardiac massage if necessary? If bradycardic for atropine? For adrenaline if cardiac arrest? Other. Date decision made Date for review.(see appendix A for reviews) Place of death Goal 14: Has family been given alternative options for place of death e.g hospice? Does family wish to take the baby to a place outside the neonatal unit (if possible) Before death After death Details:.. (consider contacting network transport team) Communication with family/ other Goal 15a: Identify how family/ others are to be informed of baby s impending death At any time Not at night time Stay overnight in hospital (where).. Primary contact.. Relationship to baby.tel.. Secondary contact.. Relationship to baby.tel.. Goal 15b: Family/ other given relevant hospital information (e.g. car parking, telephone numbers, parents facilities including rooming in rooms) Financial Support Goal 16: Families should be made aware of available financial resources (e.g. leaflets on rights and benefits, support from social services) Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 6

7 Communication Goal 17: Mother s medical team is aware of baby s condition with primary GP Practice care team Midwife/ Obstetrician Health Visitor The mother s GP practice must be contacted by the medical team if they are unaware their patient s baby is dying Is mother receiving appropriate post natal surveillance and care? Has mother been given advice on milk production [Following preterm birth and early death, mother s post natal care must be provided but may be forgotten if she has been discharged without her baby.] Once this document is complete please document below if parents do not wish to discuss it again.. NB. If you have charted N against any goal except 13, please complete variance sheet below Variance Goal No Reason for Variance Action Taken Signature Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 7

8 Section 2- End of Life Care Plan. This should be discussed with the family and may be revised at any time Each plan must be revisited every 2 weeks or at parental request Where do the family wish death to occur? (If outside the neonatal unit, see specific separate policy) Do the family wish this to be planned or unplanned? Planned? Who will be present What will happen (including planned extubation) Are the family aware of changes that may happen after death (gasping/ change in colour etc) What would the family like to happen immediately after death? (e.g spend time on NNU, move to another place including outside hospital) Would the family like to bath the baby? Who will need to be contacted (see checklist) Has post-mortem examination been discussed? (Decision) Who will collect the death certificate? Who will deal with funeral arrangements? Staff should be aware of local arrangements & give accurate information. What follow up is there for parents? Dr Signature & Date Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 8

9 Section 3- Ongoing Assessment (A) Confirm that these goals have been achieved approximately four hourly. Please ensure any goals not achieved are detailed in the variance sheet. Please repeat these two pages 24 hourly. Codes (Please enter in columns) A(Achieved) or V(Variance) Patient Problem/ Focus Assessment Pain/Comfort Measures Goal A: Baby is pain free (since last assessment)* Facial expression is relaxed Not grimacing or silent cry if ventilated *Consider using pain score chart & refer to pain medication chart (see appendix B) & network guidelines Goal B: Baby is not agitated (since last assessment) Posture is relaxed No evidence of jerkiness or rigidity on handling Limbs/ neck not extended Patient is supported in a flexed position using developmental care techniques Fluids have been offered Appropriate efforts have been made to maintain baby s temperature within comfortable parameters. Goal C: Baby s breathing is not made difficult by excessive secretions (since last assessment) Ventilation is not compromised by secretions assessed by tidal and minute volumes if ventilated Oropharynx and nasopharynx are clear of secretions (if not ventilated) Oral suction if required If secretions excessive consider Hyoscine patches and/or Glycopyrronium Goal D: Vomiting (since last assessment) Stomach aspirates are kept to a minimum to prevent vomiting Enteral feeds given as tolerated Hydration maintained Goal E: Passing urine Express bladder if necessary Avoid catheterisation if possible Nursing signature Date: Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 9

10 Codes (Please enter in columns) A(Achieved) or Variance Patient Problem/ Focus 00:00 04:00 08:00 12:00 16:00 20:00 Assessment Pain/ Comfort Measures Goal F: Mouth and eyes are moist and clean Eye care given as required ensure clean and moist if paralysed keep moist Oral care provided 4-8 hourly, or more frequently if needed Wipe away saliva with tissue Goal G: Nappy area is comfortable Check nappy and change when necessary, according to infants cues If infant is unconscious or preterm/underlying musculoskeletal problem check and change nappy area approximately every 4 hours Goal H: Maintain skin integrity Follow neonatal skin care guidelines for the maintenance of skin integrity Alter infants position frequently to avoid erosion of skin and the increased potential for the development of pressure sores Check any intravenous sites hourly Goal I: All medication is given safely and accurately Follow professional guidelines for the safe administration of medications If medication not required consider stopping & date Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 10

11 Section 3- Ongoing Assessment (B) Confirm that these goals have been achieved twice a day. Please assess that any goals not achieved are detailed in the variance sheet. Repeat these two pages 24 hourly. Codes (Please enter in columns) A(Achieved) or V (Variance) Complete 12 hourly Physical care Psychological support for parents Religious/ Spiritual support Care of the family/ Others & date Goal I: Baby is comfortable & in a safe environment Position changed when appropriate Appropriate use of developmental care techniques Appropriate temperature management Goal J: Encourage & support parents to make decisions, direct and deliver baby s care, with appropriate advice or support from HCP Wiping away with tissues any oral secretions Nappy care, oral & skin care Administering fluids as required Encourage Kangaroo care Opportunity to cuddle or bath baby Enable time alone with baby / siblings / family Goal K: Family/ Other are prepared for the baby s imminent death Check understanding of family/ others & give support where possible (check notes in initial assessment DO NOT ask parents every 12 hours but DO note if parents request support) Goal L: Appropriate religious/ spiritual support in place as desired/ needed Has chaplaincy/ religious leader been contacted if desired? (check notes in initial assessment DO NOT ask parents every 12 hours but DO note if parents request support) Goal M: Reassess the needs of those attending the patient/ family Ensure availability of rooming in room/ transitional care Ensure awareness of staff Ensure parents physical needs are met (access to kitchen / canteen / bathroom facilities / medical care etc.) Ensure ample opportunity to ask questions Ensure parents are informed / updated throughout Don t forget to record nursing & medical documentation on separate Multi- disciplinary Progress Notes Page Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 11

12 Goal Letter Variance Reason for Variance Action Taken Signature Don t forget to record nursing & medical documentation on separate Multi-disciplinary Progress Notes Page. Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 12

13 Multi-disciplinary Progress Notes Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 13

14 References 1. A Neonatal Pathway for Babies with Palliative Care Needs; ACT Palliative Care (Supportive and End of Life Care): A Framework for Clinical Practice in Perinatal Medicine: Report of the Working Group Aug 2010; BAPM 3. Making critical care decisions for your baby; Bliss ACT Basic Symptom Control in Paediatric Palliative Care; June 2011 Appendix A Review of Goal 13 Goal 13: Establish limits to resuscitative care Specifically: If signs of sepsis for septic screen & iv antibiotics? If signs of sepsis for iv antibiotics without septic screen? If signs of sepsis for oral antibiotics? If signs of sepsis & painful (e.g.otitis media) for iv antibiotics? For a change of endotracheal tube if necessary? For reintubation if extubated? If apnoeic, for positive pressure ventilation? For cardiac massage if necessary? If bradycardic for atropine? For adrenaline if cardiac arrest? Other. Date decision made Date for review.(see appendix A for reviews) Goal 13: Establish limits to resuscitative care Specifically: If signs of sepsis for septic screen & iv antibiotics? If signs of sepsis for iv antibiotics without septic screen? If signs of sepsis for oral antibiotics? If signs of sepsis & painful (e.g.otitis media) for iv antibiotics? For a change of endotracheal tube if necessary? For reintubation if extubated? If apnoeic, for positive pressure ventilation? For cardiac massage if necessary? If bradycardic for atropine? For adrenaline if cardiac arrest? Other. Date decision made Date for review.(see appendix A for reviews) Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 14

15 Symptom control may be required for: Feeding/ Gastro-oesphageal reflux Secretions Seizures Constipation Appendix B Symptom Control (Opioids) Both non-opioids (e.g. paracetemol, ibuprofen) and opioids a may be required to achieve adequate analgesia. Suggested Opioid Doses Drug Route Dose Comments Morphine Intravenous micrograms/kg As required (prn) Intravenous 10-40micrograms/kg/hr Continuous infusion in ventilated infant 10-20micrograms/kg/hr Continuous infusion in non-ventilated infant; titrate as required Subcutaneous 150micrograms/kg Not generally used due to poor absorption with paucity of subcutaneous fat Oral Double the total iv dose and give in 4 hourly amounts (divide total dose by 6) Diamorphine Intravenous 100micrograms/kg Acute pain 2.5-7micrograms/kg/hr Subcutaneous Total daily oral dose of morphine: total daily dose of subcutaneous diamorphine = 1:0.33 Total daily intravenous dose of morphine: total daily dose of subcutaneous diamorphine = 1:0.66 As required doses should be given in between as necessary; in neonatal palliative care there is no maximum dose for morphine although it may lead to respiratory depression Continuous infusion in non-ventilated babies; can be adjusted to response Version 5 (Adapted from SWBHT & St George s Hospital Integrated Care Pathway; last updated September 2011) Page 15

INTEGRATED CARE PATHWAY FOR THE DYING PATIENT PATIENT S NAME.. UNIT NUMBER. DATE.. DATE OF BIRTH.. DATE OF IN PATIENT ADMISSION DIAGNOSIS: PRIMARY.

INTEGRATED CARE PATHWAY FOR THE DYING PATIENT PATIENT S NAME.. UNIT NUMBER. DATE.. DATE OF BIRTH.. DATE OF IN PATIENT ADMISSION DIAGNOSIS: PRIMARY. PATIENT S NAME.. UNIT NUMBER. DATE.. DATE OF BIRTH.. DATE OF IN PATIENT ADMISSION DIAGNOSIS: PRIMARY. SECONDARY.. A Care Pathway is intended as a guide to treatment and an aid to documenting patient progress.