From diagnosis to ADRT An experience of withdrawal of non - - PowerPoint PPT Presentation
From diagnosis to ADRT An experience of withdrawal of non invasive ventilation July 2014 Aged 55 Driving instructor Previously fit and well The Diagnosis 18 month history of reduce strength in left hand progressive in nature Started
An experience of withdrawal of non invasive ventilation
July 2014 Aged 55 Driving instructor Previously fit and well 18 month history of reduce strength in left hand – progressive in nature Started Riluzole Applying for PIP ~ DS1500 - given so they can apply under special rules Referred to COT for adaptations to the home
Seen respiratory team - advised to come in ASAP for trial of NIV
mid FEB – 3 clients awaiting driving tests
to persuade Gordon to put himself first!
March 2015 referred to SLT and dietician May 2015 - Still struggling to take Riluzole ?? Makes him fatigued Wife and son taking time off work to provide care Nov 2015 Anxiety +++ Px oromorph 2.5mg caused drowsiness required NIV Using NIV 4 or 5 times a day as well as overnight December - fast track CHC funding BUT didn’t want carers January agreed to have carers at home
QOL - spending most of the time in his room lying in bed using the ventilator
understands
deterioration in my condition, in as much as we can rule out chest infection? Or increase in ventilator pressures?
support will now be ineffective?
become more reliant on anti anxiety drugs and morphine
ventilator will I be given medical support to enable me to do so?
wish to remove the ventilator
The legal and ethical position is clear. If a patient with capacity makes the autonomous decision to refuse a treatment, which he or she feels is burdensome, it is imperative to ensure that this occurs.
Faull C, et al. BMJ Suppl Palliat Care. 2014;4:43–49
withdrawal of treatment in theory, in practice there is ethical and moral uncertainty and mixed feelings. Many experience negative reactions from
these colleagues were unclear of the distinction between palliation of symptoms, withdrawal of treatment and assisted death
Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK Respondents found withdrawal of ventilation at the request of patients with MND to pose legal, ethical and moral challenges in five themes:
withdrawal from treatment
complexity
The management of terminal ventilator withdrawal is controversial and should ideally be dictated by patient preference. Essentially the choice lies between an abrupt discontinuation of ventilatory support or a gradual withdrawal. Some might incorrectly view this approach as euthanasia If the patient is to have ventilatory support suddenly removed, dyspnoea is likely. As with any medical process, the clinician has a responsibility to execute the patient’s request in a compassionate and humane manner. Specifically, discomfort must be anticipated and rapid titration of medications (usually opiates and benzodiazepines) to maintain comfort is essential.
Educating colleagues and facilitating safe team working
because I didn't want any of them to feel that what we'd done was, well, something it wasn't and wanted to make sure that they were all happy with what we were doing and give them an opportunity to ask any questions
teamwork where there are difficult ethical issues to tackle. The value of sharing opinions, not just with other doctors but with other professionals, family, lay people. That is what makes an ethical society I think is the shared values.
colleagues because I wanted their approval and to make sure that they thought it was the right thing to do, because I knew it was the right thing to do, I didn't have any doubts about that at all, but it was just making sure that their views were consistent with mine…
Withdrawal of Assisted Ventilation at the Request of a Patient with Motor Neurone Disease. Guidance for
for Palliative Medicine of Great Britain and Ireland 2015
Hospital Teams
services
Community Teams
therapist
Consultant and palliative care nurse from St Mary’s hospice
Capacity assessment ADRT Arrange 48 hour hospice staff presence in the home GP to prescribe anticipatory medication
Wider team informed of Gordon’s decision to withdraw from NIV on Tuesday 23rd of August 2016
Attended patient’s home to withdraw treatment. Arrived at 12pm Discussion with patient prior to commencing withdrawal to confirm he wished to continue. Midazolam and Morphine titrated to symptoms/discomfort Settings on the ventilator reduced by 4cm H20, every 10-15 minutes
comfortable in bed. Lucid, talking in full
deterioration was too much for him to manage with as he could no longer move his arms fully.
for him.
wrong?, What if he becomes distressed and we cant wean him from the ventilator?
Attempted to stop the ventilator- patient became distressed. Ventilator restarted, medication increased Once patient settled, attempted to stop the ventilator again.
I felt nervous about stopping the ventilator. Was nervous to try again after the initial stop failed. Stopped the ventilator but left the nasal pillows in place in case we had to start it again. Removed after 10 minutes.
Patient’s breathing pattern seemed to distress the family after the ventilator was removed but he remained comfortable/ non rousable. Son left the room. Reassurance given to the family throughout. It was difficult to watch, felt like we had to keep checking on him. Longer time between each breath- family kept asking if he’d passed away. Eventually passed away after 20 minutes off the ventilator. It was a strange feeling to think that he was talking and lucid 2 ½ hours ago.