Transcript final days, looking after yourself (Workshop) – Dr

End of Life Care in MND
Dr Sarah Forrest
“So Doc, how long have I got?”
Prognostication in MND
• Prognosticating / estimating survival is complex in predictable
diseases and really hard in MND.
• Patients can deteriorate rapidly, often with decompensating
respiratory failure and some patients die suddenly in the
night.
• Some patients have a more predictable slower end of life.
Perhaps 70% of people have a recognisable end of life phase.
• Many have respiratory failure, approx 50% have infection
complicating respiratory failure as the mode of death.
Case Study: part 1
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My chap, C.
First symptoms July 2013, Rt foot, diagnosed August 2014. First met him April 2015
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“When they find out what’s really wrong with me...”
April 15: Wheelchair, independent transfers, no speech / swallow issues,
breathing stable.
Day Hospice, Physio in the gym, OT support.
Muscular pain, low mood, anxiety...but doesn’t like taking medicines.
October 15: Wheelchair bound, fatigue and sleepiness
Discussions about NIV and future PEG, anticipating MND clinic tests.
“When you have so few days left you don’t want to spend them in hospital,
even if you are going to get them back later. After all, it’s the days I have now
that I want, not later.”
Jan 16: Electric wheelchair, hoist transfers, NIV at night, some dysarthria, some
coughing with food. Unstable with rapid symptom change.
Discussed EOL plans: preferred place of care and death, DNA CPR, just in case
medications.
Triggers for a short prognosis in MND
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Breathlessness / respiratory failure
Swallowing issues
Cognitive changes
Weakness
Worsening complex symptoms, including pain, anxiety.
Hussain J, Adams D, Allgar V, Campbell C. Triggers in advanced neurological conditions: prediction and
management of the terminal phase. BMJ Supp Pall Care 2014; 4: 30-37
Triggers in months prior to death
End of Life Management
• Future Care Planning in 3 stages
– Explaining the diagnosis
– Discussing interventions
– Talking about the end of life
• What do people need to know about dying with MND?
Case Study: part 2
• January 16: First chest infection, likely aspiration pneumonia.
“How long have I got?”...retracted... “speak to my wife, she’ll tell me anyway”
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Establish starting point
Acknowledge change and explain it
Talk about uncertainty in making a prognosis
Ask about concerns (find those fears!)
Focus on symptoms and managing them
Explain that death is usually comfortable and not related to choking or gasping
for breath.
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Respiratory failure, rising CO2, falling conscious level, medication as needed.
Symptoms at the End of Life
End of life care is quite generic;
it’s not that different in MND
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Breathlessness
Pain
Anxiety / agitation
Secretions
Nausea
• NIV
• Feeding
4 A’s of Anticipatory Drugs: “Just in case”
• Analgesia
– Morphine, diamorphine, oxycodone
• Anxiolytic
– Midazolam, levomepromazine
• Antisecretory
– Hyoscine, glycopyrronium
• Antiemetic
– Cyclizine, haloperidol, levomepromazine
Symptoms at the End of Life
End of life care is quite generic; it’s not that different in MND
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Breathlessness: Opioids, fans, sometimes O2
Pain: Opioids, positioning, bladder/bowels
Anxiety / agitation: Midazolam, levomepromazine
Secretions: Hyoscine/glycopyrronium, suction, turning
Nausea: usually drug related
• NIV: to stop or to continue...
• Feeding: reduce volumes as person deteriorates
Case Study 3
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September 1st: more sleepy, didn’t make Day Hospice
September 8th: seen in DH with wife. Very sleepy but rousable, sleeping much
of the time, eating little, drinking from teaspoon, not thirsty. Pain worse and
has started using oxynorm. Anxiety bad and needing lots of diazepam.
Community Matron has raised question of a syringe driver. Talked about last
weeks to days. Discussed and agreed syringe driver: oxycodone 5mg and
midazolam 10mg / 24hrs.
“I’ve had enough now....will you run away with me?...Goodbye everyone!”
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September 13th: Reassessed at home, deteriorated, pain and anxiety needing
extra sc and oral medications. Not bothered by sleepiness, prefers it.
Prescribed new doses for syringe driver: oxycodone 20mg, midazolam 20mg
and add glycopyrronium 0.2mg / 24hrs.
September 15th: Reviewed by CNS, unsettled night, wants to be sleepy, not
eating, just having sips of fluids. Driver doses increased further to oxycodone
30mg, midazolam 40mg and glycopyrronium 0.4mg / 24hrs.
September 17th: Breathing changes, wife called DNs for stat dose midazolam.
Died peacefully at home.
Taking care
“Emotional toil”: the work/burden we carry as a result of caring.
Young patients
Fit and healthy
Long relationships
Short relationships
Sudden deaths
Unmanaged problems/symptoms
Inability to make plans
Resilience
“Psychological resilience is defined as an individual's ability to
successfully adapt to life tasks in the face of social disadvantage
or highly adverse conditions”
Team working and informal support
Debriefing and Schwartz rounds
Supervision
Counselling