Illustrative Case Dr Samantha Lund Medical Director, Royal Trinity Hospice
Conflicts of interest • Nil • Slides are as anonymised as possible but please don’t disseminate specific details
Patient MG • Gentleman in his eighties • Referred in October 2016 for community support • Diagnosis of MND and PMH of prostate cancer • Referral was made for pain and symptom control and carer support
MG • Lives with second wife • Children from previous marriage and one from current marriage • Grandchildren • Retired • Describes reading as his hobby • Lives in a house, considering microenvironment • Describes his wife and family as his motivation
MND diagnosis • Diagnosis had been made in Spring of 2015 • Had 3-4 year history of vague symptoms • Then started to have falls • Finally diagnosed under neurologist • At time of referral to community services had been given a prognosis of 6 months by neurologist and was awaiting respiratory studies
Advance care planning • Had completed an ADRT • This detailed that he did not want- ❖ Cardiopulmonary resuscitation ❖ Artificial feeding of any sort ❖ Lifesaving surgery • Wife LPA for health and welfare
Initial assessment • Generalised aches and pains- not wanting medication • Increasingly SOB- would be out of breath by end of a sentence, awaiting assessment re NIV • Poor sleep • Mobility- ‘significant deterioration’ over preceding 2 months. Able to mobilise with a stick, struggling with stairs, finding it difficult to move in bed • Social- made some adaptations including moving bed, bed handles and leaver, bath chair
Initial assessment- psychological • Known to psychiatrist, on antidepressant • MG’s wife fully aware of disease and likely prognosis • Notes that ADRT in place • Also notes that considering going to Dignitas
Psychiatry • Not clear how long he had been seeing psychiatrist but for ?years prior to referral • Letter from review 2 weeks prior to first assessment. ❖ Details physical deterioration ❖ States that MG had declined carers ❖ Talks about Dignitas- MG had stated that his consideration of this was based 50% on his fears of incapacity, 50% on not wanting to be a burden ❖ Noted that he had not made a definite decision ❖ Conversation around increasing care provision
Psychiatry continued ❖ Fearful of future ❖ Described still getting joy from life and that he was trying to remain as positive as possible ❖ Remained on antidepressant- felt it was helping
Ongoing care • MB referred for outpatient physio at hospice ❖ Goals- to increase functional ability (specifically get in and out of bed/ chair and on/off commode ❖ - to help maintain muscle strength and exercise tolerance ❖ - to help pace his exercise to manage his breathlessness • Re-referred to community neuro- rehab team
Ongoing care • At the beginning of the following year officially retired • Felt he was deteriorating- increasingly fatigued, mobility affecting ADLs • Some further adaptations being made at home • Continued to have physio as outpatient, also accessed PAFS and complementary therapy
Ongoing care • By spring of that year has relocated at home into microenvironment • Feels breathing is worse- now needs careful positioning at night • Still awaiting respiratory review • Starts seeing a befriender
Ongoing psychiatry • Continues to be seen regularly • Consultation at the beginning of the year mentions largely physical changes but also that he has put ‘Dignitas to one side’ • Describes his mood as short tempered and frustrated
Ongoing care • Later in the spring has respiratory review and is set up with NIV • This is difficult- feels panicky and that he is choking on his saliva • Spends a month abroad but on return has deteriorated further • No movement in his left arm • Has carers to help wash and dress morning and night • Very tearful with HCPs • Talks about Dignitas again but now feels it would be too much for his family
Ongoing care • Within 2 weeks of return from abroad MG is admitted to hospice • Admission is for symptom control, carer support and rehabilitation
Inpatient admission • Largely uneventful • Uses atropine drops for excessive salivation- positive effect • Seen by neurology and changed to nose mask • Issues around incontinence managed • Sleeps better
Ongoing care back at home • Manages further trip abroad • Physical health ‘plateaus’ for a number of months ❖ Carers 24 hours a day ❖ Able to mobilise short distances inside ❖ Goes out with carers 3x week ❖ Has commode and convene
Ongoing psychiatry • Continues to be reviewed regularly • Often letters document physical changes and how these affect mood • Anxiety becomes increasingly prominent • Advises regular diazepam and considers antidepressant change (not actually done) • Talks about fear of what will come and of being frightened • Some concerns GM’s wife not managing as well
Ongoing care • Further review under neurology team and feeding is discussed • Considers potential for feeding tube but declines • Following further deterioration reviews ACP and states preference not to have antibiotics (IV or PO) • Discusses withdrawal of NIV- explained that this is not a clear process as not dependent on it 24 hours a day
Ongoing care • Has further short admission to IPU, referred for ‘symptom control and carer support’ • Very anxious about whether the inpatient nurses will be able to provide the care he has got used to • Eventually is discharged after 3 days as his wife feels it is easier for him to be at home
Medications • On referral- ❖ Finasteride (remains on throughout) ❖ Mirtazepine (remains on, dose changes twice) ❖ Riluzole (is stopped) ❖ Alfuzocin XL (remains on throughout) ❖ Starts diazepam regularly ❖ Trials atropine drops for secretions (stopped when they improve) ❖ Trials paroxetine and fexofenadine for itch ❖ Starts carbocisteine
Medications ❖ For SOB uses oramorph prn 5 times and then stops because of constipation ❖ Uses lorazepam prn ❖ 6 weeks before he dies he tries a 5mcg butrans patch but does not feel that it helps so removes it ❖ Oramorph prn is used again in last week of life in order to try and estimate how much medication should be put into a syringe pump
Back at home • Decides he wants to stop NIV • Has problems clearly explained (?length of time ?how to monitor symptoms) ❖ Important to note we have done this before but difference was that patient was completely NIV dependent • Has capacity assessed by 3 different health care professionals (as visiting to say goodbye) • Has anticipatory medications put in place and commenced on syringe pump, DNs are made aware, primary care is made aware • Goes to bed and does not wear NIV
Final night • Agitated but no call to HCPs • Dies at lunchtime
Issues • Practical- how to palliate? Had limited opiates before. Did our fear of ‘hastening death’ make us overly cautious about medication • Capacity- very clear that he had capacity to make the decision to stop the NIV but did he fully understand/ could he fully understand the problems of predicting how long death would take/ the difficulties of symptom control
Issues • Previous express wish to go to Dignitas- did he see this as a different form of assisted suicide? Did this matter? • Some confusion in expressed wishes/ actions • History of depression and psychiatric input • Were we helping him to die? • Intention in stopping treatment • Issues of control over timing of death- very specific to withdrawal of certain treatments (ventilation)
Thank you • slund@royaltrinityhospice.london
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