The document discusses organizing teaching and discharge management for patients requiring home mechanical ventilation (HMV). It outlines key elements of effective discharge planning including multidisciplinary teams, caregiver education and support, ensuring clinical stability and access to resources before discharge, and developing follow-up and risk management plans. Networks of specialized and generalist healthcare professionals and community resources are important to coordinate long-term care for patients after hospital discharge.

1. Joan Escarrabill MD Director of Master Plan for Respiratory Diseases Institut d’Estudis de la Salut Barcelona [email_address] How to organize teaching and discharge management Vienna. September 12th 2009

2. Agenda Introduction Health professionals and team-working Discharge planning Follow-up and risk management Networks

3. Lassen. Lancet 1953;i:37-41. Bag ventilation

4. 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.

5. Bertoye. Lyon Médical 1965;38:389-410. HMV is not a simple acute discharge. A greement between doctors, patients and caregivers Caregiver involvement is essential Patient confidence is crucial M eet the technical needs Minimization risk strategies

6. Eur Respir J 2002; 20: 1343–1350

7. Discharge at different levels ICU Home Outpatient clinic General ward RICU High-dependency unit Hospice

8. Agenda Introduction Health professionals and team-working Discharge planning Follow-up and risk management Networks

9. Team Expertise +

10. Effective team It has a range of individuals who contribute in different ways . Clear goals . Everyone understands the tasks they have to do . Co ordinator There is a supportive, informal atmosphere . C omfortable with disagreement . A lot of discussion ( Group members listen to each other ) F eel free to criticise L earns from experience . www.kent.ac.uk/careers/sk/teamwork.htm

11. The team produces more than the individual contributions of members.

12. Patient care team Wagner. BMJ 2000;320:569-72. R. Casas & P Romeu (1897)

13. Aiken L. NEJM 2003;348:164-6 Holistic vision Better care related to coordination Increasing role of non-physcian health professionals .

14. Skills related to home mechanical ventilation (HMV) technology and home care Ability to assess the adequacy of caregivers Knowledge of community resources Capacity to integrate home, outpatient, and hospital care Designing of guideline-based care plans that integrate the clinical needs and preferences of the patient Behavioral counseling and teaching of self-management Expertise in group consultations

15. Learning curve The amount of clinical exposure and levels of self-reported competence, not years after graduation , were positively associated with quality of care Hayashino Y. BMC Medical Education 2006, 6:33 Hasan A. BMJ 2000;320:171-3 We can minimise the learning curve Formal training courses Simulation Assistance from expert

16. Qual Saf Health Care 2009;18:63–68.

17. Acad. Med. 2003;78:783–788. Low-tech simulators (mannequins) Simulated/standardized patients Screen-based computer simulators Complex task trainers Realistic patient simulators team training and integration of multiple simulation devices ultrasound, bronchoscopy, cardiology, laparoscopic surgery, arthroscopy, sigmoidoscopy, dentistry

18. Actors of discharge Health Service Health professionals Supplier Caregiver Home Patient Financial issues Public/Private Discharge team Case manager Risk management Education Experience

19. Actors of discharge : Health professionals Health professionals Discharge team Case manager Risk management Experience Chest physicians Nurses Respiratory therapists Speech therapists Nutricionists Social workers .... Hospital Primary care Resources in the community Non-profit Private Volunteers

20. Key elements in discharge Harmonic Multidisciplinary effort Comprehensive Integrated Starts earlier Over time Process

21. 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

22. Agenda Introduction Health professionals and team-working Discharge planning Follow-up and risk management Networks

23. 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).

24. 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.

25. Monaldi Arch Chest Dis 2003; 59: 2, 119-122. Diurnal adaptation Efficacy of nocturnal ventilation Hospital training: caregiver & patient Follow-up plan

26. Initiation of NIV 28 patients DMD Spinal musc atrophy Old polio Scoliosis Thoracoplasty Stable nocturnal hypoventilation IN group may be more effectively ventilated (al least in the first 2-3 months)

27. 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

28. Outpatient vs inpatient initiation of NIV Small impact in the hospital resources consoumption (availability of beds) Outpatient initiation of NIV It’s feasible and safe Not better than inpatient In some cases inpatient initiation is mandatory Social factors encourage inpatient initiation (distance, caregiver...)

29. 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

30. 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

31. 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

32. Respir Med 2007;101:1068-1073 A = Acute E = Elective n = 43 Age = 77 + 1.9 yrs Compliance : 8.3 + 3.1 hrs/day Dropout 11% Patients < 75 yrs: 2% 9% 4,8% Compliance < 4 h/day

33. HMV in patients > 75 yrs old Survival 6 yrs Farrero et al. Respir Med 2007;101:1068-1073

34. Chest 2004;126:1583-91 15% Octogenarians of ICU Admissions 35% Discharge to care facility Mortality

35. Ventilation and oxygen needs stable or palliative care plan. Cardiovascular stability or palliative care plan . Patient and family motivated to achieve discharge . Feeding established. Manageable secretions. Technical resources can be managed at home . Organization of care in the community can be achieved . Funding can be gained for home care package . No change expected in the management of the disease Criteria for discharge Addapted from Pratt P & Escarrabill J (2008) Kinnear (1994)

36. 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

37. Practical tools Health professionals Checklist Patients & caregivers Written information Phone numbers Ventilator settings Especific recommendations

38. Equipment needs for NIV Schönhofer B, Sortor-Leger S. Eur Respir J 2002;20:1029-38 Respiratory accessories Humidification Oxygen supplementation Drugs nebulisation Power supply: battery power source, backup ventilator Secretions management Daily living activities Communication Nutrition

39. 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

40. 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

41. Daily living activities Mobility Strollers. Standard Wheelchairs. Rigid Frame Weelchairs. Nonrigid Frame Weelchairs. Seating Systems. Motorized Weelchairs Transfer and lifting systems Transportation

42. Daily living activities www.mobilityexpress.com/

43. Room setting Accessibility Doors Elevators Alternative systems (volunteers) Bed and mattressses Bathing and toileting

44. Room setting www.medame.com

45. Technological support Architectural Elements Communication Computers Home Management Personal Care: eating, personal higyene Orthotics & Prosthetics Recreation Seating Sensory Disabilities Therapeutic Aids Transportation Vocational Management Walking Wheeled Mobility 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

46. Nutritional status Difficulties in chewing and swallowing Factors triggering or aggravating eating problems: Food textures States / consistences Bolus size Associated difficulties wuth salivation Breathing d isorders while eating 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.

49. Effective communication The maintenance of effective communication favors patients remaining in the communitiy Bach JR. Am J Phys Med Rehabil 1993;72:343-9 . Simple icons

50. A ugmentative and alternative communication (AAC) devices N ot waiting until speech is affected to start asking around for a AAC symbol-based , text-based , text-to-speech machines , in which you can type a sentence and the computer “speaks it.” www.als-mda.org/publications/everydaylifeals/ch6/#aac_devices Eye Tracking Head Mouse Trackballs Joysticks Touch Screens Mouse Alternatives

51. 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

52. Agenda Introduction Health professionals and team-working Discharge planning Follow-up and risk management Networks

53. Follow-up Package therapy Clinical follow-up Caregiver role Risk management Respite and Ongoing Support

54. Clinical follow-up Pulsioximetry Home visits Outpatient clinic Hospital admission Phone call General practitioner Community resources e-mail

55. Respir Med 2007;101:62-68 Post-operative intubation time 3,8 + 3,2 h. Only 1 patient > 12 h. Stay un postsurgical reanimation unit 19 + 9 h. 19 + 6 h. in the general population n=16

56. www.ventusers.org/vume/HomeVentuserChecklist.pdf

57. www.ventusers.org/vume/TreatingNeuroPatients.pdf The patient and designated caregiver are experts . accept the patient's suggestions even if they run contrary to standard hospital protocols . Communication is critical . Return to the patient’s routine as soon as possible. No oxygen alone. Be careful with anesthesia and sedation Use the patient’s own ventilator Ask the patient or caregiver about acceptable positions. Life continuation/cessation is the patient’s decision

58. Therapy “package” Servera E. Sancho S. Lancet Neurol 2006;5:140-7 It’s mandatory to evaluate therapy “package” C hanges over time

59. Caregiver depression Chest 2003;123:1073-81 Caregivers of patients receiving LTV have similar characteristics to other caregiving populations

60. Caregiver Strain & Participation Impact of tracheotomy Information Restricted personal life Rossi Ferrario S. Chest 2001;119:1498-1502 Education and support when approaching terminal issues Sharing information to formulate life plans Gilgoff I. Chest 1989;95:519-24

61. 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

62. Ann Intern Med 2005;142:121-8 41% ...test results return after discharge 9.4% of theses results were potentially actionable

63. CMAJ 2004;170(3):345-9 … of patients had an adverse event (AE) after hospital discharge 1/4 50% of the AEs were preventable or ameliorable.

64. BMJ 2000;320:791-4 Complex systems involve many gaps between, people, stages, and processes. Presence of many gaps , yet only rarely do gaps produce accidents. How practitioners identify and bridge new gaps that occur when systems change? Nocturnal t ransfers Admission just before change of shift Patients admited out of their service Weekends

65. August 14 2000 Power cut kills man on home ventilator BY SAM TOWLSON AN INVESTIGATION has been launched into the death of a disabled man whose life-saving equipment failed during a power cut. Safety Feb 15, 2001 A Fatal Complication of Noninvasive Ventilation Lechtzin N., Weiner C. M., Clawson L. N Engl J Med 2001;344:533

66. Alarm malfunction 0,9% Power off n = 300 18,6% Disconnection 5,1% Obstruction

67. 13 % 4 %

68. Power failure Ventilator malfunction Accidental disconnection Circuit obstruction Mask fit Tracheostomy: Blocked Falls out Cannot be replaced after changing Medical problems Thorax 2006;61:369-71 Risk exist We can prevent risk Tecnical service Training (patient and caregiver) Patient shared records

69. 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

70. 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

71. Respite and Ongoing Support.... when the burden of home care can be great Hospice Palliative care support

72. 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

73. Agenda Introduction Health professionals and team-working Discharge planning Follow-up and risk management Networks

74. Some questions Specific network for each disease? The needs of each patient are heterogeneous Patients' needs change through the natural history Balance between difficulties of accessibility and personal benefits Answer to problems non directlly related to respiratory failure.

75. Patients on HMV Prevalence / 100.000 hab (*) without pediatric patients

76. Relationship with resources in the community Population: 291.500.000

77. Generalists or specialized teams: only? Generalists Specialized teams Support network

78. Community nurse Home care General practitioner Resources in the community RRT Social worker Occupational therapist Multidisciplinary team

79. Network Reference center General practitioner Support network I nformation technology and communication Escarrabill J. Arch Bronconeumol 2007;43:527-9 Patient-centered care : accessibility vs performance

80. Support network Case manager J Nurs Care Qual 2004;19:67-73 Support team Care for patients with different diseases but with common problems Skills to care patients with HMV (respiratory problems) Coordination of care: specialized team / general ist Alternatives to the home (hospice)

81. Catalonia WHO Palliative Care Demonstration Project at 15 Years (2005) X Gómez-Batiste. Journal of Pain and Symptom Managemen t 2007;22: 584-590 21,400 patients received palliative care P alliative care networks 95% population coverage Home care, hospice, social support

82. Monaldi Arch Chest Dis 2007; 67: 3, 142-147. n = 792 patients 16% HMV >12 hours/day 20% Tracheo 45% Mobility / Handicap 36% Living > 30 km far from hospital Severity of the disease Accessibility

83. The “S. Maugeri” Telepneumology Programm Pulse oximetry / HR Pneumotacograph Central workstation on call Tutor nurse Vitacca M. Telemed & e-Health 2007;13:1-5 Technical elements Health professional access General support Nurse solving problems Access to pneumologist on duty 24 h/day Educational material Link with GP Telemetric monitoring

84. Vitacca M. Breathe 2006;3:149-158 Telemedicine is an innovative medical approach

85. Community nurse Home care General practitioner Resources in the community RRT Social worker Occupational therapist Multidisciplinary team Support team Hospice

86. MJA 2003; 179: 253–256 “ more expert” patients T o develop common ground . Patient autonomy : “fully informed choice” ... re-organising healthcare systems to maximise the partnerships of patients and doctors in managing chronic disease .

87. Health care system Direct access to the team Waiting time Fragmentation

88. Working for patients on home mechanical ventilation Organized by: With the contribution of: Welcome Benvinguts Bienvenidos

89. Technological innovation Care & organization Real life

90. Quality of life Autonomy: to decide Mobility Social networks Caregiver support