11

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

jescarrabill@gencat.cat

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.

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

4

Agenda

Agenda

Team training

Discharge

planning

Safety

1 2

3

5

Agenda

Agenda

Team training

Discharge

planning

Safety

1 2

3

6

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

7

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

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

PhysicianConfidence that the patient’s needs are being met

9

Key elements in discharge

Multidisciplinary effort

Comprehensive

      

                    Integrated

Starts earlierOver time

Process

10

Process

Multidisciplinary effort

Comprehensive

IntegratedHarmonic

Key elements in discharge

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 multidisciplinary 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

Monaldi Arch Chest Dis 2003; 59: 2, 119-122.

Diurnal adaptation

Efficacy of nocturnal ventilation

Hospital training: caregiver & patient

Follow-up plan

15

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

16

NIV: Feasibility

Indication

Feasibility

Characteristics of the respiratory failure

Home conditions

Patients preferences

Discharge

NON YESAlternatives

HospiceLow tech hospitals

Practicability of a proposed project

17

NIV: Feasibility

Indication

Feasibility

Characteristics of the respiratory failure

Home conditions

Patients preferences

Discharge

NON YESAlternatives

HospiceLow tech hospitals

Technical criteria

Social criteria

18

Actors of discharge

Health ServiceHospital

SupplierCaregiver

Home

Patient

Financial issues

Public/Private

Discharge teamCase manager

Risk management

Education

Experience

19

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

20

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)

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

DischargeAvoid the weekend

Case manager

                                             

22

Practical tools

Health professionals

Checklist

Patients & caregivers

Written information

Phone numbers

Ventilator settings

Especific recommendations

23

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

24

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

25

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

26

Daily living activities

Mobility– Strollers.– Standard Wheelchairs.– Rigid Frame Weelchairs.– Nonrigid Frame Weelchairs.– Seating Systems.– Motorized Weelchairs

Transfer and lifting systems

Transportation

27

Daily living activities

www.mobilityexpress.com/

28

Room setting

Accessibility– Doors– Elevators– Alternative systems (volunteers)

Bed and mattressses

Bathing and toileting

29

Room setting

www.medame.com

30

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

31

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.

32

33

34

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

35

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

36

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

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

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

40

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

41

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

42

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)

43

Follow-up assessment

Pulsioximetry

Home visits Outpatient clinic Hospital admission Phone call General practitioner Community resources e-mail

44

Vitacca M. Breathe 2006;3:149-158Vitacca M. Telemed & e-Health 2007;13:1-5

Telemedicine is an innovative medical approach

45

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

46

www.slideshare.net/jescarra