Introductory Talk MaryAnne Vass Clinic overview Care management from diagnosis through the trajectory of disease Diagnosis ID: 920033
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Slide1
Practical care of the person with MND
Introductory Talk
Mary-Anne Vass
Slide2Clinic overview
Care management from diagnosis through the trajectory of disease
Diagnosis
Multi-disciplinary team
2-3 monthly reviews
Confirmation of diagnosis Continuity of care practical difficulties are anticipated
Nurse triage call Respiratory Function End of Life
patient goals identified Resp. Specialist / Lung Function Care & support
Secondary consulting service
Support for other service providers
Slide3Meet the team
Neurologist Pastoral care
Speech
therapist
Music therapist
Clinic Nurse
Dietician
Clinical Neuropsychologist
Social worker
Occupational therapist
Psychiatrist
Research nurse
Physio therapist
Clinical psychologist
Lung function test.
Slide4Meet and greet by nurse
Main co-ordinator of care - allocated a patient caseload
Patient Shared Care Plan
(SCP)
MND Victoria, Regional Advisor
Advanced Care Planning (ACP)
Slide5zzm
Advanced Care Planning
Patient information Kit given
Slide6Slide7Slide8Slide9Slide10Slide11Slide12If you can’t come to us – we can come to you!
Telehealth
Slide13Weekly multi-disciplinary team meeting
Together we plan patient care and future management
Our approach is one of a shared, collaborative role
Referrals made to external providers
Slide14Patient SCP are completed
Slide15Case Study
Meg
is a 48 year old
Married with two
daughters aged
8
& 10yrs old
.
Very healthy and athletic
Onset late 2011
Frequent yawning, slurred speech, mild
dysphagia
Diagnosed bulbar onset MND
Referred to Bethlehem Aug 2012
Slide16Sept
2012 – first assessment
Pseudo bulbar affect
Generalised brisk reflexes
FVC – 98% predicted
SNIP- 66%
Early discussion about PEG
Referral to
SP
DT
OT
Pastoral C
Slide17Dec 2012 – 3 months
Speech and swallowing a little worse
Weight loss.
Tongue fasciculation, wasting/weakness.
Plan for PEG early New Year, after holiday.
Referral to
SP
DT
Clin
Psych
SW
Slide18Slide19Feb 2013 –
6 months
PEG placed privately
Complicated by PEG site infection
Home Enteral Nutrition (HEN) Program
On-going involvement of AH
Slide20Sept 2013 –
12 months
Moved house
Speech less than 100% intelligible
Modified oral intake
Secretions troublesome
Poor L) hand function
Referral to
SP
DT
OT
PT
Slide21Cancelled next appointments
Slide22One year later ………….
Oct 2014Email
request to investigate technology for communication and environmental controls
No speech and poor hand function
Mobile in powered wheel chair
Stand transfers
Anxious about the future
Referral to
SP
OT
PT
Clin
psych
Slide23Jan 2015 – 2 ½
years
Wheelchair bound
Most of nutrition via PEG
Constipation
Botox to salivary glands
Mild
orthopnoea
Interested in exploring NIV
Referral to
Resp. Spec.
Music T
Nrsg
Slide24Feb-March
2015
Respiratory review
FVC – 28%, SNIP – 27%
Sleep study
Co2 53 overnight
Trial of NIV as a day case at Austin hospital
Advanced Care Planning - ACP
Slide25Slide26Advanced Care Planning
(ACP)
Slide27May 2015 – 3yrs
Husband turns up alone for ACP
Meg has filled out on-line Questionnaire
Driving to Queensland for a holiday
Slide28June 2015 – 3yrs
Phone call from Queensland Hospital ICU
- Chest infection
- Difficulty clearing secretions
- Using NIV 24/7
Should they do a tracheostomy?
Recovered without invasive ventilation
Back to intermittent use of NIV
Able to fly home to Melbourne
Keen to have an ACP discussion
Slide29What is important?
Being at home
Ability to communicate
Minimising the impact on her children
Burden of care
NFR
For active medical management,
a
ntibiotics, IV therapy
Wanted to consider the role of elective
tracheostomy
Further education from VRSS doctor & nurse
Regular review over
tele
-health with Austin team
Slide30Jan 2016 – 3 yrs 8mths
Secretion problems worse
-
Probanthine
tablets
- Saline nebuliser
- Suction
* Changed to
Glycopyrrolate
tablets ( special access)
Slide31March 2016 – 3 yrs 10mths
Decides against elective
tracheostomy
Using NIV @ 10/24 hours
Agrees to community palliative care referral
Considering IDC
Slide32End of Life Care
Progressive weakening of the respiratory muscles leads to respiratory failure, often precipitated by pneumonia. TERMINAL PHASE can be associated with -
More severe shortness of breath
Anxiety
S
ecretion management
Improve symptom management by
- reducing discomfort with Opiates and Benzodiazepines.
Slide33