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 Riluzole Applying for PIP ~ DS1500 - given so they can apply under special rules Referred to COT for adaptations to the home

Pre diagnosis

Family

Enjoying life

• Assessment • Symptom Management • Referrals • Future planning • December 2014 ~TOSCA CO2 6.12kPa • 3 Monthly Assessments

Seen respiratory team - advised to come in ASAP for trial of NIV • patient wanted to wait until mid FEB – 3 clients awaiting driving tests • It took a few telephone calls to persuade Gordon to put Early January c/o himself first! orthopnoea and anxiety

March 2015 referred to SLT and dietician May 2015 - Still struggling to take Riluzole ?? Makes him fatigued End of Feb Wife and son taking time off work to provide care 2015 discharged Nov 2015 Anxiety +++ home with Px oromorph 2.5mg caused drowsiness required NIV 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

Wife reading about end of life Begins discussing end of life decisions with MDT March 2016 Decided against gastrostomy tube Off vent for only 2 hours

June 2016 • Openly discussed poor QOL - spending most of the time in his room lying in bed using the ventilator • Feels ready to die, wife understands

• Are my breathing difficulties due to deterioration in my condition, in as much as we can rule out chest infection? Or increase in ventilator pressures? Email from • Is it right that increased ventilation support will now be ineffective? patient and • If I remain on the ventilator will I wife 10 th become more reliant on anti anxiety drugs and morphine August 2016 • Should I wish to remove my ventilator will I be given medical support to enable me to do so? • What is my life expectancy should I wish to remove the ventilator

Last Party

The legal and ethical position is clear. Withdrawal - If a patient with capacity ethical debate, makes the autonomous decision to refuse a treatment, emotional which he or she feels is stress, and burdensome, it is imperative to team stress ensure that this occurs. Faull C, et al. BMJ Suppl Palliat Care . 2014;4:43–49

• Though clear about the legality of withdrawal of treatment in theory, in practice there is ethical and moral uncertainty and mixed feelings. Many experience negative reactions from Theory verses other healthcare professionals when Practice these colleagues were unclear of the distinction between palliation of symptoms, withdrawal of treatment and assisted death

Respondents found withdrawal of ventilation at the request of patients with MND to pose legal, ethical and moral challenges in five themes: • Ethical and legal rights to withdrawal from treatment Withdrawal of ventilation • Discussions with family at the patient's request in MND: a retrospective • Discussions with colleagues exploration of the ethical and legal issues that have • Experiences of legal advice arisen for doctors in the UK • Issues contributing to ethical 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 Terminal euthanasia Weaning 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 • I wanted to get all the nursing staff together 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

• It's reinforced for me the value of 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.

• I don't think I was asking colleagues or discussing it with 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 Professionals. Association for Palliative Medicine of Great Britain and Ireland 2015 What do we need to do?

Our Hospital Teams Community Teams • Palliative care Consultant • Neurologist challenges • GP • MND Specialist nurse • Palliative care Nurse Specialist in co- • Respiratory ventilation • Counselling services ordinating • Occupational therapist • Physiotherapist • Physiotherapist care • Occupational therapist • DN • Orthotics • Wheelchair services • Social care • Assistive technology services • Dietitian • Speech and language therapist

Wider team informed of Gordon’s decision to withdraw from NIV on Tuesday 23 rd of August 2016 ‘Tuesday’s are a bad day for me’ Consultant and palliative care nurse from St Mary’s hospice Arrange 48 GP to Capacity hour hospice prescribe ADRT assessment staff presence anticipatory in the home medication

Attended patient’s home to withdraw treatment. Arrived at 12pm Discussion with patient prior to commencing withdrawal to confirm he wished to continue. Withdrawal of Ventilation Midazolam and Morphine titrated to symptoms/discomfort Settings on the ventilator reduced by 4cm H20, every 10-15 minutes

• On attending the patient’s home, he was comfortable in bed. Lucid, talking in full sentences. He explained that his deterioration was too much for him to manage with as he could no longer The move his arms fully. ventilation • His family were in attendance. • He said that Tuesday’s were a bad day nurse….. for him. • My worries- what if anything goes wrong?, What if he becomes distressed and we cant wean him from the ventilator?

Attempted to stop the ventilator- patient became distressed. Altering the Ventilator restarted, ventilator medication increased settings 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. Weaning settings Stopped the ventilator but left the nasal pillows in place in case we had to start it again. Removed after 10 minutes.

After 10 minutes the nasal pillows were removed He spent his last 20 minutes with his family He passed away at approx. 2.30pm

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. Nurse’s views 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.

Thank you to our patient and his family for allowing us to share his story