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P rotocols for discharge planning . Neuromuscular disorders –  H ome mechanical ventilation for patients with neuromuscular disorders Joan Escarrabill  MD Master Plan of  Respiratory Diseases (PDMAR) Institut d’Estudis de la Salut Barcelona [email_address] Stressa, April 3th 2009
of cases of polio that needed ventilation during the acute phase required long term ventilatory support 10% Kinnear Br J Dis Chest 1985;79:313-51.
Bertoye. Lyon Médical 1965;38:389-410. ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Agenda Agenda Team training Discharge planning Safety 1 2 3
Agenda Agenda Team training Discharge planning Safety 1 2 3
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Actors of discharge :  Health professionals Health professionals Discharge team Case manager Risk management Experience ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Hospital Primary care Resources in the community Non-profit Private Volunteers
J Nurs Care Qual 2004;19:67-73 Case manager coordinates the discharge plan  Patient and caregiver  Confidence & competence  Nurses & RRT Understanding of what is needed Physician Confidence that the patient’s needs are being met
Key elements in discharge Multidisciplinary effort Comprehensive                               Integrated Starts earlier Over time Process
Key elements in discharge Process Multidisciplinary effort Comprehensive Integrated Harmonic
Agenda Agenda Team training Discharge planning Safety 1 2 3
Discharge planning Discharge planning is defined as the development of an individualised discharge plan for the patient prior to them leaving hospital for home Definition The discharge planning includes the  multidis ci plinary effort  for the transition between the hospital and the home (or the facility where we transfer the patient).
Aims of discharge planning   SAFETY  &  EFFICACY O’Donohue W.  Chest 1986;90(suppl):1S-37S. To prepare patients and carers... ...physiologically and psychologically for transfer home, with the highest level of  independence  that is feasible. To provide continuity of care... Bertoye A.  Lyon Médical 1965;38:389-410.
Monaldi Arch Chest Dis 2003; 59: 2, 119-122. ,[object Object],[object Object],[object Object],[object Object]
Respir Med 2007; 101:1177-82 5.5 + 1.3  ses s ions 7 + 1.1  LOS (days) 16 patients 6.8 + 1  hours/day 6.6 + 1.3  hours/day Compliance
NIV:  Feasibility Indication Feasibility Characteristics of the respiratory failure Home conditions Patients preferences Discharge NON YES Alternatives Hospice Low tech hospitals Practicability of a proposed project
NIV:  Feasibility Indication Feasibility Characteristics of the respiratory failure Home conditions Patients preferences Discharge NON YES Alternatives Hospice Low tech hospitals Technical criteria Social criteria
Actors of discharge Health Service Hospital Supplier Caregiver Home Patient Financial issues Public/Private Discharge team Case manager Risk management Education Experience
High dependency or high risk  Impaired self-care Free time out ventilator < 10 hrs Dependency Accessibility Living far from the hospital Comorbidity Non respiratory clinical condicionts Home and caregiver conditions Respir Care 2007; 52:1056-62 Invasive  home ventilation
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Criteria for discharge Addapted from Pratt P & Escarrabill J (2008) Kinnear (1994)
Discharge in practice Timing Discharge process starts as soon as possible Feasibility Identify the competent caregiver Education Analize practical issues Take your time Home visit Discharge Avoid the weekend Case manager                                               
Practical tools Health professionals Checklist Patients & caregivers Written information Phone numbers Ventilator settings Especific recommendations
Equipment needs for NIV Schönhofer B, Sortor-Leger S. Eur Respir J 2002;20:1029-38 Respiratory accessories ,[object Object],[object Object],[object Object],[object Object],Secretions management Daily living activities Communication Nutrition
Secretions management Hanayama. Am J Phys Med Rehab 1997;76:338-9 Seong-Wong. Chest 2000;118:61-5 Eductional programme Clearance secretions Manually assisted coughing Hyperinsufflations Insufflation-exuflation cycles Mechanically assisted coughing
Manually assisted cough  Air stacking Deliver volumes of air that the patient retained to the deepest volume possible with a closed glottis Ambu bag Volume ventilator
Daily living activities ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Daily living activities www.mobilityexpress.com/
Room setting ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Room setting www.medame.com
Technological support ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Patients will need a wide range of assistive devices, in some cases for a short period of time Support groups may help provide short term use devices
Nutritional status ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Proactive approach to anticipate dysphagia symptoms The  BMI  should be used with caution for the evaluation of the nutritional status of patients with  ALS  and Duchenne muscular dystrophy Pessolano FA  et al . Am J Phys Med Rehabil 2003;82:182-185.
 
 
Effective communication The maintenance of effective communication favors patients remaining in the communitiy ,[object Object],Simple icons
A ugmentative and alternative communication (AAC)  devices   N ot waiting until speech is affected to start  asking  around for a  AAC ,[object Object],[object Object],[object Object],www.als-mda.org/publications/everydaylifeals/ch6/#aac_devices Eye Tracking Head Mouse Trackballs Joysticks Touch Screens Mouse Alternatives
A ugmentative and alternative communication (AAC)  devices   Though handheld or palm computers may be attractive, their small size may soon make them unmanageable to a person with  neuro-muscular disease
Agenda Agenda Team training Discharge planning Safety 1 2 3
Neale G. J R Soc Med 2001;94:322-330. < 20% Directly related to surgical operations or invasive  procedures < 10% General ward care 53% 18% Misdiagnoses At the time of discharge
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Thorax 2006;61:369-71 Risk exist We can prevent risk Tecnical service Training  (patient and caregiver) Patient shared records
www.ventusers.org/vume/TreatingNeuroPatients.pdf ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Risk   minimisation (i) Accidental disconnection from ventilator Adapted from AK Simonds, 2001 Power failure Back-up ventilator Regular maintenance Battery Ambu bag Blocked Humidification Suction Falls out Trained caregiver to change trach Smaller size trach tube available Technical aspects The device Ventilator breakdown Tracheostomy
Risk   minimisation (ii) Adapted from AK Simonds, 2001 Medical and social aspects Resources in the community Communication Medical problems Exacerbation alarm signs  Ressucitation Medical hot-line Emergency phone numbers Ambulances Supplier
Follow-up assessment Pulsioximetry ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Vitacca M.  Breathe  2006;3:149-158 Vitacca M. Telemed & e-Health 2007;13:1-5 Telemedicine is an innovative medical approach
Hospital Pre-discharge Patient evaluation Community preparation Clinical stability Nutrition Secretion management Caregiver Technical support Financial issues Home conditions Feasible? Yes Non Home Alternatives (Hospice?) Discharge Plan Discharge Equipment Training Ventilator Humidification Suction devices Wheel chair Patient Caregiver Emergencies Funding application
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Discharge 03 04 09

  • 1. P rotocols for discharge planning . Neuromuscular disorders – H ome mechanical ventilation for patients with neuromuscular disorders Joan Escarrabill MD Master Plan of Respiratory Diseases (PDMAR) Institut d’Estudis de la Salut Barcelona [email_address] Stressa, April 3th 2009
  • 2. of cases of polio that needed ventilation during the acute phase required long term ventilatory support 10% Kinnear Br J Dis Chest 1985;79:313-51.
  • 3.
  • 4. Agenda Agenda Team training Discharge planning Safety 1 2 3
  • 5. Agenda Agenda Team training Discharge planning Safety 1 2 3
  • 6.
  • 7.
  • 8. J Nurs Care Qual 2004;19:67-73 Case manager coordinates the discharge plan Patient and caregiver Confidence & competence Nurses & RRT Understanding of what is needed Physician Confidence that the patient’s needs are being met
  • 9. Key elements in discharge Multidisciplinary effort Comprehensive                            Integrated Starts earlier Over time Process
  • 10. Key elements in discharge Process Multidisciplinary effort Comprehensive Integrated Harmonic
  • 11. Agenda Agenda Team training Discharge planning Safety 1 2 3
  • 12. Discharge planning Discharge planning is defined as the development of an individualised discharge plan for the patient prior to them leaving hospital for home Definition The discharge planning includes the multidis ci plinary effort for the transition between the hospital and the home (or the facility where we transfer the patient).
  • 13. Aims of discharge planning SAFETY & EFFICACY O’Donohue W. Chest 1986;90(suppl):1S-37S. To prepare patients and carers... ...physiologically and psychologically for transfer home, with the highest level of independence that is feasible. To provide continuity of care... Bertoye A. Lyon Médical 1965;38:389-410.
  • 14.
  • 15. Respir Med 2007; 101:1177-82 5.5 + 1.3 ses s ions 7 + 1.1 LOS (days) 16 patients 6.8 + 1 hours/day 6.6 + 1.3 hours/day Compliance
  • 16. NIV: Feasibility Indication Feasibility Characteristics of the respiratory failure Home conditions Patients preferences Discharge NON YES Alternatives Hospice Low tech hospitals Practicability of a proposed project
  • 17. NIV: Feasibility Indication Feasibility Characteristics of the respiratory failure Home conditions Patients preferences Discharge NON YES Alternatives Hospice Low tech hospitals Technical criteria Social criteria
  • 18. Actors of discharge Health Service Hospital Supplier Caregiver Home Patient Financial issues Public/Private Discharge team Case manager Risk management Education Experience
  • 19. High dependency or high risk Impaired self-care Free time out ventilator < 10 hrs Dependency Accessibility Living far from the hospital Comorbidity Non respiratory clinical condicionts Home and caregiver conditions Respir Care 2007; 52:1056-62 Invasive home ventilation
  • 20.
  • 21. Discharge in practice Timing Discharge process starts as soon as possible Feasibility Identify the competent caregiver Education Analize practical issues Take your time Home visit Discharge Avoid the weekend Case manager                                               
  • 22. Practical tools Health professionals Checklist Patients & caregivers Written information Phone numbers Ventilator settings Especific recommendations
  • 23.
  • 24. Secretions management Hanayama. Am J Phys Med Rehab 1997;76:338-9 Seong-Wong. Chest 2000;118:61-5 Eductional programme Clearance secretions Manually assisted coughing Hyperinsufflations Insufflation-exuflation cycles Mechanically assisted coughing
  • 25. Manually assisted cough Air stacking Deliver volumes of air that the patient retained to the deepest volume possible with a closed glottis Ambu bag Volume ventilator
  • 26.
  • 27. Daily living activities www.mobilityexpress.com/
  • 28.
  • 30.
  • 31.
  • 32.  
  • 33.  
  • 34.
  • 35.
  • 36. A ugmentative and alternative communication (AAC) devices Though handheld or palm computers may be attractive, their small size may soon make them unmanageable to a person with neuro-muscular disease
  • 37. Agenda Agenda Team training Discharge planning Safety 1 2 3
  • 38. Neale G. J R Soc Med 2001;94:322-330. < 20% Directly related to surgical operations or invasive procedures < 10% General ward care 53% 18% Misdiagnoses At the time of discharge
  • 39.
  • 40.
  • 41. Risk minimisation (i) Accidental disconnection from ventilator Adapted from AK Simonds, 2001 Power failure Back-up ventilator Regular maintenance Battery Ambu bag Blocked Humidification Suction Falls out Trained caregiver to change trach Smaller size trach tube available Technical aspects The device Ventilator breakdown Tracheostomy
  • 42. Risk minimisation (ii) Adapted from AK Simonds, 2001 Medical and social aspects Resources in the community Communication Medical problems Exacerbation alarm signs Ressucitation Medical hot-line Emergency phone numbers Ambulances Supplier
  • 43.
  • 44. Vitacca M. Breathe 2006;3:149-158 Vitacca M. Telemed & e-Health 2007;13:1-5 Telemedicine is an innovative medical approach
  • 45. Hospital Pre-discharge Patient evaluation Community preparation Clinical stability Nutrition Secretion management Caregiver Technical support Financial issues Home conditions Feasible? Yes Non Home Alternatives (Hospice?) Discharge Plan Discharge Equipment Training Ventilator Humidification Suction devices Wheel chair Patient Caregiver Emergencies Funding application