1. Session 7: Withdrawal of ventilation

2. Aims / Objectives
Background
Legal stance
Case report
Learning points

3. Disease progression
Respiratory muscle function will worsen, and if untreated, respiratory complications eventually cause death
MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones
Non-invasive ventilation (RCT) and weak cough management (Ex Op) will increase length of life in non-bulbar MND

4. The most challenging decisions are generally about withdrawing or not starting a treatment when it has the potential to prolong the patient’s life. This may involve treatments such as… mechanical ventilation.
(GMC. Treatment and care towards the end of life:
good practice in decision making, 2010)

5. The withdrawal experience – need for increased understanding
“Professionals have said that providing the care for a ventilator dependent patient who has asked for assisted ventilation to be withdrawn is practically and emotionally challenging.”
Although the ethics and legality are, in theory, very clear, in practice many professionals felt and to a lesser extent still feel very uncertain about these aspects
Families recount how care during withdrawal has often fallen short of what they and the patient needed

6. Withholding and withdrawing treatment
Primary aim of starting a treatment is to provide a health benefit to the patient
The same justification applies to continuing a treatment already started
Psychologically may be easier to withhold a treatment than to withdraw it……

7. How to do it?

8. Preparation from the start….

9. When the patient asks for treatment withdrawal…
“The law requires that an adult patient who is mentally and physically capable of exercising choice must consent if medical treatment of him is to be lawful...
Treating him without his consent or despite a refusal of consent will constitute the civil wrong of trespass to the person and may constitute a crime.”
Lord Donaldson MR (1993)

10. Autonomy
As long as a person has capacity they have the right to make their own decisions relating to medical care
Individuals must be given help and information to make a decision themselves
Unwise, eccentric or odd decisions are appropriate and allowed
ADRTs should be encouraged in case capacity is lost and follow the same guidance as for someone who hasn’t lost capacity.
MCA 2005 ENGLAND AND WALES

11. What about those who lack capacity?
MND frequently affects the bulbar and facial muscles causing difficulty with communication
NIV and TV affect the ability to communicate
Up to 15% have associated frontotemporal dementia
Inability to communicate desires, concerns and consent to continue treatment
(TV patients can become locked in)
and/or
Loss of capacity

12. Withdrawal in those lacking capacity
Hopefully patient who is or becomes ventilator dependent will have an ADRT in place.
Enactment of a valid ADRT in a patient who has lost capacity is appropriate and legal
In the absence of an ADRT but where there is LPA (health & well being) requesting withdrawal, the MDT must agree withdrawal is in the best interests of the patient. Withdrawal in a patient who has lost capacity is then appropriate and legal.
In the absence of an ADRT and LPA, withdrawal decisions must be based on a best interest determination as set out in the MCA 2005.
Withdrawal in a patient who has lost capacity is then appropriate and legal.

13. The degree of sedation required (For MV dependent) is that whicor painful stimulus
Adequate anticipatory sedation for the patient must be administered
This can includes high doses of opiates and benzodiazpines to prevent any distress, particularly to highly dependent ventilator patients. Levomepromazine may be a useful second-line sedative
The route may be intravenous or, more appropriate in the community setting, sub-cutaneous
st’ reduction of the assisted ventilation, no symptoms are precipitated

14. The often short time between withdrawal of ventilation and death feels uncomfortable and causative
In withdrawal of mechanical ventilation, the reason death occurs is because of the underlying disease

15. Case Study
Steve
55 years old
Motor Neurone Disease

16. November 2012 - diagnosed MND

17. January 2015 Lower limb weakness; right upper limb weakness
Morning headache
Orthopnoea
Reduced PFTs
Well preserved bulbar function
Referral for NIV
January 2015

18. January 2015 March / April 2015 May 2015 June 2015
Commenced NIV – expectations discussed
January 2015
Further respiratory deterioration and NIV use increased
March / April 2015
Ventilation dependency almost 24/7
May 2015
Request to discuss treatment withdrawal and EoL management
June 2015

19. Still able to manage 15 – 30 mins ventilator free breathing
Steve very clear about what level of disability he was prepared to tolerate
process of NIV withdrawal discussed
Capacity assessed
ADRT discussed and recorded
Personnel to be involved agreed
All parties aware of who to be contacted when approporiate
– Meeting at home

20.
Family made team aware that Steve felt his QoL had deteriorated and withdrawal of NIV requested

21. 11.08.15 Arrangements made to visit the following evening
Stat dose (2.5mg) of sedation and opiate given that evening with little effect

22. 12.08.15 All family members present and aware of plan
Further stat dose (5mg Morphine and 5mg Midazolam) given and driver installed that morning – each at 10mg / 24 hour
Steve comfortable throughout the day, but did require further stat dose of 15mg / 5mg around 16:00 and 16:30
Now very settled

23. Spoke with family about the events that may follow; expectations prepared
Initially reduced ‘back-up’ respiratory rate from 12 to 8bpm
Further stat dose 15mg Midazolam given 17:45
Over the 45 minutes that followed, inspiratory pressure reduced from 18, to 12, then to 8cmH2O
17:30

24. Although some spontaneous breathing, no arousal or distress evident, therefore ventilator switched off
18:15
Mask initially left in place in case treatment had to be recommenced and sedation reviewed
Mask then removed
18:20
When we left, Steve continued to breath spontaneously, but appeared settled throughout
18:30

25. Steve continued to make spontaneous respiratory effort but remained settled, until he died just after 2am on Friday 14th August

26. Reflection……..

27. What went well?
Steve decided, and therefore had full control over, when his treatment should be discontinued
“MND is not taking any more of me”
His death was peaceful and dignified, with his family around him
He and his family were included in all discussions and preparations
Communication and co-ordination between those involved
“Dream Team!”

28. What did we learn? The unpredictability of MND……
The practicalities around these arrangements left a feeling within the health care team that this situation was engineered
Family saw this as necessary and positive
Time between decision being made and commencement of plan is critical
Practical aspects – alarms, separate room for meds…
Removing NIV will not always result in immediate death
Collaboration is key!

29. Audit and data collection

30. Audit Overall: withdrawal was a positive experience for the family
only in one case did a family member become very distressed
withdrawal was a positive experience for the team
In 12 cases it was thought the process was positive for the patient
being involved improves confidence
Overall:

31. Doses used: Audit Mean Midazolam 26mg (Range 10mg- 120mg)
Mean Morphine 15mg (Range mg)
7 patients required levomepromazine, mean dose 102mg (Range mg)
Time until death after removal: immediately up to 24hours
Time until death from administration of first drug: 30 mins-3 days
Doses used:

32. Summary NIV and TV prolongs life in MND
A significant number of patients will become ventilator dependent
A small number of patients will ask for ventilatory support to be removed
Removal of ventilation is legal and in keeping with good and ethical medical care
Withdrawal needs to be appropriately managed to minimise distress for everyone