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Protocols for discharge planning.
Neuromuscular disorders – Home mechanical ventilation for patients with neuromuscular disorders
Joan Escarrabill MDMaster Plan of Respiratory Diseases (PDMAR)
Institut d’Estudis de la Salut
Barcelona
[email protected]
Stressa, April 3th 2009
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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.
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3Bertoye. Lyon Médical 1965;38:389-410.
HMV is not a simple acute discharge.
Agreement between doctors, patients and caregivers
Caregiver involvement is essential
Patient confidence is crucial
Meet the technical needs
Minimization risk strategies
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Agenda
Agenda
Team training
Discharge
planning
Safety
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Agenda
Agenda
Team training
Discharge
planning
Safety
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3
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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
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Actors of discharge: Health professionals
Health professionals
Discharge teamCase manager
Risk management
Experience
Chest physicians Nurses Respiratory therapists Speech therapists Nutricionists Social workers ....
Hospital
Primary care
Resources in the community
Non-profitPrivateVolunteers
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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
PhysicianConfidence that the patient’s needs are being met
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Key elements in discharge
Multidisciplinary effort
Comprehensive
Integrated
Starts earlierOver time
Process
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Process
Multidisciplinary effort
Comprehensive
IntegratedHarmonic
Key elements in discharge
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Agenda
Agenda
Team training
Discharge
planning
Safety
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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 multidisciplinary effort for the
transition between the hospital and the home (or the facility where
we transfer the patient).
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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.
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Monaldi Arch Chest Dis 2003; 59: 2, 119-122.
Diurnal adaptation
Efficacy of nocturnal ventilation
Hospital training: caregiver & patient
Follow-up plan
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Respir Med 2007;101:1177-82
5.5 + 1.3 sessions
7 + 1.1 LOS (days)
16 patients
6.8 + 1 hours/day
6.6 + 1.3 hours/day
Compliance
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NIV: Feasibility
Indication
Feasibility
Characteristics of the respiratory failure
Home conditions
Patients preferences
Discharge
NON YESAlternatives
HospiceLow tech hospitals
Practicability of a proposed project
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NIV: Feasibility
Indication
Feasibility
Characteristics of the respiratory failure
Home conditions
Patients preferences
Discharge
NON YESAlternatives
HospiceLow tech hospitals
Technical criteria
Social criteria
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Actors of discharge
Health ServiceHospital
SupplierCaregiver
Home
Patient
Financial issues
Public/Private
Discharge teamCase manager
Risk management
Education
Experience
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High dependency or high risk
Respir Care 2007;52:1056-62
Invasive home ventilation
Impaired self-care
Free time out ventilator < 10 hrs Dependency
AccessibilityLiving far from the hospital
Comorbidity Non respiratory clinical condicionts
Home and caregiver conditions
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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)
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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
DischargeAvoid the weekend
Case manager
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Practical tools
Health professionals
Checklist
Patients & caregivers
Written information
Phone numbers
Ventilator settings
Especific recommendations
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Equipment needs for NIV
Schönhofer B, Sortor-Leger S. Eur Respir J 2002;20:1029-38
Respiratory accessorie
s
• Humidification• Oxygen supplementation• Drugs nebulisation• Power supply: battery power source, backup ventilator
Secretions management
Daily living activities
Communication
Nutrition
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Secretions management
Hanayama. Am J Phys Med Rehab 1997;76:338-9Seong-Wong. Chest 2000;118:61-5
Eductional programme
Clearance secretions Manually assisted coughing
Hyperinsufflations
Insufflation-exuflation cycles
Mechanically assisted coughing
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Manually assisted cough
Ambu bag Volume ventilator
Air stacking
Deliver volumes of air that the patient retained to the deepest volume possible with a closed glottis
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Daily living activities
Mobility– Strollers.– Standard Wheelchairs.– Rigid Frame Weelchairs.– Nonrigid Frame Weelchairs.– Seating Systems.– Motorized Weelchairs
Transfer and lifting systems
Transportation
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Daily living activities
www.mobilityexpress.com/
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Room setting
Accessibility– Doors– Elevators– Alternative systems (volunteers)
Bed and mattressses
Bathing and toileting
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Room setting
www.medame.com
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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
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Nutritional status
Difficulties in chewing and swallowing Factors triggering or aggravating
eating problems:– Food textures– States / consistences– Bolus size
Associated difficulties wuth salivation Breathing disorders 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.
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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
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Augmentative and alternative communication (AAC) devices
Not 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 TrackingHead MouseTrackballsJoysticksTouch Screens
Mouse Alternatives
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Augmentative 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
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Agenda
Agenda
Team training
Discharge
planning
Safety
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3
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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
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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
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www.ventusers.org/vume/TreatingNeuroPatients.pdf
1. The patient and designated caregiver are experts. accept the patient's suggestions even if they run contrary to standard
hospital protocols.
2. Communication is critical.
3. Return to the patient’s routine as soon as possible.
4. No oxygen alone.
5. Be careful with anesthesia and sedation
6. Use the patient’s own ventilator
7. Ask the patient or caregiver about acceptable positions.
8. Life continuation/cessation is the patient’s decision
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Accidental disconnection from ventilator
Risk minimisation (i)
Adapted from AK Simonds, 2001
Power failure
Back-up ventilatorRegular maintenance
BatteryAmbu bag
BlockedHumidificationSuction
Falls out Trained caregiver to change trachSmaller size trach tube available
Technical aspects
The device
Ventilator breakdown
Tracheostomy
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Adapted from AK Simonds, 2001
Medical and social aspects
Resources in the community Communication
Medical problem
s
Exacerbation alarm signs
Ressucitation
Medical hot-line
Emergency phone numbers
AmbulancesSupplier
Risk minimisation (ii)
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Follow-up assessment
Pulsioximetry
Home visits Outpatient clinic Hospital admission Phone call General practitioner Community resources e-mail
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Vitacca M. Breathe 2006;3:149-158Vitacca M. Telemed & e-Health 2007;13:1-5
Telemedicine is an innovative medical approach
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Hospital
Pre-discharge
Patient evaluation Community preparation
Clinical stabilityNutritionSecretion managementCaregiver
Technical supportFinancial issuesHome conditions
Feasible?
Yes NonHome Alternatives
(Hospice?)Discharge Plan
Discharge
Equipment Training
VentilatorHumidificationSuction devicesWheel chair
PatientCaregiverEmergencies
Funding application
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www.slideshare.net/jescarra