Case Dr Samantha Lund Medical Director, Royal Trinity Hospice - - PowerPoint PPT Presentation

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