Royal Liverpool Children s NHS Trust Alder Hey Rapid Discharge Pathway for End of Life Care

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Shona Peters
5 years ago
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1 Royal Liverpool Children s NHS Trust Alder Hey Rapid Discharge Pathway for End of Life Care Pathway for patients where a consensus decision has been made by the child s / young person s family & multi-professional team prior to discharge home, or to hospice or other hospital for end of life care. Name. Hospital number.. Date of Birth. Weight. Lead consultant:... Discharge :.... Contact telephone number (at discharge address) Date pathway initiated: / / Preferred place of care*: Home Hospice Local hospital (*may need to discuss with the CCNT/Medical Team before completing place of care) Liverpool Care of the Dying Child Pathway to be started Yes No Instructions for use (also see Guidance Notes for more details) This care pathway is intended as a guide to the planning, documentation and management of the discharge of paediatric patients from hospital for end of life care. Practitioners are, of course, free to deviate from this guidance. However any such variation in practice must be documented in the variance box at the end of each section. 1. All goals are in heavy typeface. Interventions which act as prompts to support the goals are in standard type. 2. Tick () the boxes when goals and interventions have been achieved. If a goal is not achieved, then details should be recorded in the variance box at the end of each section. Do not cross () the goal box, as this may be completed at a later date, and further explanation added to the variance section. 3. On discharge, two additional copies of the completed pathway should be made. One copy to be filed in the child s casenotes and one for the Children s Community Nursing Team records. The original should accompany the family to the home / hospice / DGH. All personnel completing the pathway please sign below Name (Print) Full signature s Professional title Date Personnel completing the pathway please sign below (continued) Continue overleaf Name (Print) Full signature s Professional title Date

2 Key professionals involved in the care & support of the patient at home or in hospital identified GP Lead Consultant 2

3 Name Date of birth Date.... Fax No: Palliative Care Nurse Specialist Hospice / shared care centre / local hospital Fax No: Ward / Unit Nurse Community nurse Fax No: Other Nurse Specialist Midwife Health visitor / School nurse Physiotherapist / Occupational therapist School Dietitian Lead Social worker Pharmacy Fax No: Other professionals / significant others Name Pilot December

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5 Name Date of birth Date.... Tick () boxes when goals & interventions are achieved. If not achieved, record details as variance Goal 1: Discharge planning discussion with CCNT Time: Person contacted: Consultant liaison with GP or Hospice / local paediatrician about taking over care Contacted by (name) Discussed with (name) (Nurse to complete as record that the contact has been achieved) Details, if variance: Goal 2: Resuscitation discussed and documented Not for resuscitation For suction and oxygen only Documented plan for airway management agreed with family (if Tracheostomy, ET Tube, Nasopharyngeal Airway) NA Details, if variance: Goal 3: Family aware of possible complications of illness mode of death Interview with consultant / senior doctor and CCNT Family have access to telephone & transport in emergency Plan of action & support in case of death in transit/ immediately after discharge agreed with family (see guidance notes G, H & I) Name & contact details of hospital doctor to complete death certificate (in case of death in transit - see guidance notes G, H & I): Post Mortem examination / tissue donation requested? (see guidance note K) Plan for organising post mortem / tissue donation agreed with family (see guidance note K or refer to Palliative Care Team) No NA Yes Yes Details, if variance: Pilot December

6 Goal 4: Medication, nutrition & equipment needs reviewed Non essential medication discontinued Route, timing & mode of administration of essential medication appropriate for discharge Non essential tubes / lines removed Any other invasive interventions discontinued Apnoea alarm / oxygen saturation / other monitoring discontinued Details, if variance: Goal 5: Medical needs for transfer to home/ hospice/ DGH addressed No specific medical needs for journey Oxygen dependent / required for journey Ventilated for extubation at home Suction required for journey Medical / Nursing staff to accompany child on journey Position: Position: Details, if variance: Goal 6: Suitable transport arranged for child s journey home Paramedic ambulance Private ambulance Hospital Taxi Family s own transport Other Suitable transport arranged for family (if different to child) Date Details, if variance: Goal 7: Medical needs for home / hospice / DGH provided for Take home PRN medication prescribed & given to the family Pain Nausea and vomiting Anxiety Regular medication (if not discontinued) Palliative care drug box prescribed by Palliative Care Team Other needs: Symptom management plan provided by CCNT Not Yes required : : : : : : Details, if variance: : 6

7 Name Date of birth Date.... Goal 8: Planned date of discharge identified Planned date: Planned time: Actual date: Actual time: Details, if variance (including date & time of death if died before discharge): Goal 9: Discharge plan communicated GP informed Midwife informed Health Visitor / School Nurse informed (via meditech referral) District Nurse Liaison informed (via meditech referral) Keyworker for End of Life care in community identified Name of Keyworker: Documentation ready to accompany child (see Appendices 2-4): Consultant discharge proforma letter for referring unit / hospice / DGH / community Proforma action plan letter for death in transit / immediately following discharge Nursing discharge proforma letter (completed by ward nurse) for keyworker in the community team / hospice / DGH Yes Not required Other Nurse Specialist informed Others informed (specify): Details, if variance: : Goal 10: Religious / Cultural / Spiritual / Communication support needs discussed Special wishes / communication needs around the time of death (record details) Date Goal 11: Patient has equipment needed for home care 11a: Sleeping / manual handling additional needs Yes No Bed / cot sides Pressure relieving mattress Slip sheet Hoist Pram / wheelchair Car seat Palliative Physiotherapy / OT assessment Other: Required before discharge Requested Date Provided Date Details, if variance: Pilot December

8 11b: Wound / stoma care additional needs Yes No Dressings Dressing pack Lotions/ cleansing supplies Required before discharge Requested Date Provided Date Details, if variance: 11c: Nutritional support additional needs Yes No i. Nasogastric Tube / Gastrostomy No NG Gastrostomy Spare tube Enteral feeding tube type: Required before discharge Requested Date Provided Date tube size: Indicator paper (if required) Adhesive dressings Syringes given Ongoing supply of tubes etc arranged Training for parents Routine tube changes to be performed by: Emergency tube replacement by: ii. Pump required for feeds No Yes Pump & giving sets for home feeds Pump training for family Required before discharge Requested Date Provided Date iii. Supply of feeds required No Yes Dietician informed Supply of feeds to take home Further supply of feeds to be obtained from: Required before discharge Requested Date Provided Date iv. Child has central venous access needs No Yes Central venous access to be managed by (who?): CVL pack Syringes IV Specialist Nurse informed Ongoing supply of equipment arranged 8 Required before discharge Requested Date Provided Date Complete further details of TPN / IV fluid requirements on the following page

9 Name Date of birth Date c: Nutritional support additional needs (continued) v. Child on Total Parenteral Nutrition No Yes Discussion with family about future TPN Decision to discontinue TPN Previous home TPN patients only: Supply of TPN feeds & equipment Required before discharge Requested Date Provided Date Details, if variance: vi. Child on IV Fluids No Yes Discussion with family about future IV fluids Decision to discontinue IV fluids If IV fluids still necessary: Infusion pump Training for parents Required before discharge Requested Date Provided Date Details, if variance: 11d: Respiratory support additional needs Yes No i. Home Oxygen No Yes Oxygen cylinders arranged with GP Oxygen giving sets arranged Oxygen concentrator ordered Mask/nasal specs/adhesive dressing Notifications according to home oxygen policy checklist Parents advised to inform: Home Insurance provider Car Insurance provider Training for parents Required before discharge Requested Date Provided Date ii. Home Suction required No Yes Suction machine Suction tubing Suction catheters & yankeurs Ongoing supplies arranged Training for parents Required before discharge Requested Date Provided Date Pilot December

10 11d: Respiratory support additional needs (continued) iii. Home Tracheostomy care required No Yes Spare tubes Essential equipment for tracheostomy care (see Tracheostomy equipment list Appendix 5) Ongoing equipment supplies arranged Suction training for parents Discussion with family about implications of blocked tracheostomy tube Parents able to perform emergency tube change / other appropriate emergency management as agreed with consultant Required before discharge Requested Date Provided Date Details, if variance Date 11e: Elimination additional needs Yes No Commode / urinals Bedpan Pads Stoma bags Stoma Nurse Specialist referral Catheter equipment (alcowipes, elastoplast / gauze, overnight drainage bag & catheter stand) Ongoing supply of equipment arranged Training for parents Required before discharge Requested Date Provided Date Details, if variance Date Goal 12: Patient has appropriate follow up arrangements (if discharged to community) First community nurse visit First GP visit (within 24 hours) Hospital follow up discussed with family 24 hour emergency contact details: (check family have access to a phone for outgoing calls) Liverpool Care of the Dying Child Pathway to be initiated Details of arrangements: Contact number: Yes No Details, if variance: : Date 10

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.