Starting and monitoring NIV in MND Dr David Oliver Consultant - - PowerPoint PPT Presentation

Starting and monitoring NIV in MND

Dr David Oliver Consultant Physician Wisdom Hospice Honorary Reader University of Kent D.J.Oliver@kent.ac.uk

Introduction

• How do we discuss?
• How do we start?
• What should we discuss when we

start?

• How do we monitor?

Monitoring

• Ongoing monitoring from diagnosis

Suspicion SNIP Oximetry Symptoms

• Orthopnoea
• Disturbed sleep
• Morning headache
• Dreams
• Feeling muzzy / unwell

Monitoring

• Suspicion

Symptoms Signs Investigations

• Further investigation

MIP / MEP Overnight oximetry Blood gases

Patient issues

• Facing multiple losses

Physical

• mobility, speech

Cognitive changes Emotional

• expression problems
• Fear of disease

Previous experience “Information”

• Fear of death and dying

Communication and discussion

• Communication problems

Speech issues Understanding issues

• Cognitive change

Fronto-temporal dementia

• 10-15%

Frontal changes and cognitive change

• ?50%

Early decision making - benefits

• Increased discussion
• Involvement of all
• Options can be considered carefully
• Gradual information giving
• Slower decision making
• Cognitive impairment less likely

Options and Choices

• Clear options presented

Positive and negative aspects

• Non judgemental approach
• Opportunity for discussion
• Time to consider

discussion early enough for consideration patient not feeling rushed into a decision

Discussion

• Ongoing

At all stages opportunity to discuss possible changes Explanation of testing

• Awareness of issues

Patient Family Professionals

• Joint clinic

Palliative medicine Respiratory medicine

Starting NIV – discussion of issues

• Positives

Symptom management benefit Sleep improved Eating More energy

Starting NIV - discussion of issues

• Negative

Disease progression Issues with mask Issues coping with NIV Future planning

• Withdrawal
• Deterioration
• Advance care planning

Starting NIV

• At home
• Specialist respiratory nurse visit at home
• Monitoring

By nurse

• In person
• Telephone
• 24 hour telephone availability

By modem

• Continuous monitoring
• Checked every day
• The settings can be altered remotely

Problems when starting

• Negative perception of the mask

Offer masks, try without the machine, listen to the fears

• Concerns over “the machine”

Practice, reassurance that the settings cannot be increased by mistake

• Pressure tolerance

Ramping (slow increase), ensuring leakage is minimised

Problems when starting

• Noise

Place on a towel, ear plugs

• Dry mouth

Full face mask, humidification

• Leaks

Try new masks, consider removal

• f beard

Problems when starting

• Saliva

Medication “Some is better than none” Daytime use

• Claustrophobia

Explore possible reasons Time and patience Familiarisation Slow increase in use

Issues with ventilation

• Deterioration

Disease still progresses Increasing risk of reduced communication

• Emergency situation

Sudden deterioration Tracheostomy placed as an emergency Possibility of becoming “locked in” with tracheostomy

Issues with interventions

• Reduced discussion of future

Disease progression Effectiveness of intervention Discussion of dying Preparation

• Family

Advance care planning

• Increased awareness and use
• Complex issues
• Decisions may be difficult to discuss

Person Family Professionals

• Patient involvement

Potential conflicts in families

Advance care planning

Multiple teams

• Neurology
• Rehabilitation
• Specialist palliative care
• Respiratory

ventilatory support

• Gastroenterology

PEG

• Primary Care
• Social care

Multiple teams

• Complexity of the situation
• Differences in

Goals Roles Processes Relationships within the different teams.

• Overlap and interaction between

teams the team members

Co-ordination of care

• Need

A proper flow of communication and information for patients and their families A designated point of contact for each stage in the pathway A needs assessment identifying the patient’s individual problems

Deterioration

• Coping with deterioration

Breathing issues General deterioration Cognitive / communication issues

• Planning

What will happen?

• Medication available
• Patient and family aware
• Professionals aware
• Discussion

Within team Across teams

Planning ahead

• Ensuring all are aware of what to do

Emergency situation Co-ordination of care

• Plans are well known
• Back up available

Conclusion

• Care is individualised
• Complex issues

Physical Psycho-social Spiritual

• Multidisciplinary assessment
• Maximising

Quality of life Quality of death