End of Life Care Some Practical Tips and Case Studies

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Transcript End of Life Care Some Practical Tips and Case Studies

End of Life Care
Some Practical Tips and
Case Studies
Dr Luke Feathers
Consultant in Palliative Medicine
What will we cover?
• Identifying patients at the end of life - and
what do to next
• Advance Care Planning
• DNACPR forms
• Challenging cases
Identifying Patients at
• What are your challenges?
Identifying patients at
• Proactive vs reactive
• What’s the prize?
• Prognostic paralysis
What’s the prize?
• Symptom control
• Communication
• Planning for the future
• “I am sorry. I forgive you. Thank you. I love
Barriers to ACP
Barriers to ACP
• Hope and fear
• Death as Taboo
• Professional inexperience
• Reductionist thinking - tick box culture?
• Planning ahead
• Safer and more effective care
• Continuity
• Reduce misunderstandings/conflict
• Values – beliefs - feelings
• Interventions eg CPR
• PPC – acknowledging impact on treatments
• Religious, spiritual and personal needs
• Includes family views
GMC End of Life Care Guidance
ACP - ethical issues
• Is it autonomy or paternalism?
• So?
Advance decisions to refuse
treatment (ADRT)
• What you don’t want to happen
• Legally binding
• MCA 2005
• Specific circumstances, wording needed for
refusing life sustaining treatments
• MND, dementia
Advance Statements
• What you would like
• Not legally binding
• Aim to guide future treatment – values etc
• Preferred place of death (PCT measure?),
treatment escalation plan
• EMAS EOL decisions form
• GSF Care Home ACP tool
• Preferred Priorities of Care
• Foreseeing what will happen
• Response shift
• Differing views
• Impact of BBN
• “I want to live for the moment”
• Controlling death – The false promise of ACP
ACP cartoon
• New diagnosis
• Death of a family member
• Patient request
• Prognostic indicators
• Multiple admissions
• Going to a care home
Do patients want to
• 73% of patients would like to discuss prognosis
• 8% of people with COPD had been informed they
were going to die from the COPD
• 64% of clinicians felt it was difficult to start a
• In severe COPD, when offered an appointment
with a palliative care specialist to discuss
prognosis / end of life care issues (on top of usual
care) 29% took up the offer 2
Elkington et al, 2001 Matthews et al, 2007
Why ACP?
• Can instil hope
• Empowerment
• Helps relationships – less feeling of burden
• A future consistent with their values
• But…left to HCPs to initiate…not a focus
within current clinical care
BMJ 2006:333;886 Davison and Simpson
Other challenges
• Patient expectation
–COPD - BMJ 2011:2011;342;142
•Chaos narrative
“People like Mr X who doesn’t really bother us that
much, we really only see him when he’s not well.”
Hospital Dr
“At least if they are on the register, someone in the
practice is talking to them, whereas they are forgotten
otherwise.” GP
Useful phrases?
• “You’ve been quite poorly recently – what are
your thoughts about all of this?”
• “This is the third time you’ve been in hospital
this year, it seems to be getting more
frequent – what are your thoughts (feelings)
about this?”
• ‘Would you find it helpful to talk about the
future? How would you want to be cared
• “Let’s hope for the best and plan for the
• July 2010 New form
• Crosses care boundaries
• Explicitly about CPR and not other Rx
• Includes suitably trained/experienced nurses
• Patient keeps original
Decision making
• Where if might be useful, discuss option
• What about when patients insist when we
know it won’t work?
DNACPR discussions – when
• “Do you want to be resuscitated?”
= proxy question….”Do you want to live?”
= for families “Do you love them?”
Linguistics affects
• Recommendations for particular treatment
(e.g. ‘‘I’m gonna give her some cough
• Recommendations against particular
treatment (e.g. ‘‘She doesn’t need any
Social Science & Medicine 60 (2005) 949–964 Stivers
EOL parallels
• “Resuscitation won’t work so I need to fill in
a do not resuscitate form”
• “We’ve discussed that you’d like a dignified
and peaceful end and so….I’m going to let
the ambulance service know…to support
you and your family…rather than to try to
restart your heart...as it wouldn’t work …”
• “Allow a natural death….”
ACP recommendations
• Keep it simple
• EMAS EOL form, special notes, GSF list
• Consider identifying patients “at risk”
• Quality and productivity benefits….
• Useful phrases
• 16 June am, 17 Nov pm Loros Training
Challenging cases
Case Study
• 65 year old lady
• Advanced breast cancer
• Base of skull, skin, lung mets
• Recurrent hypercalcaemia – Rx 3 times
• Sent home to die (PPD)
• Family ask for feeding
• Subcut fluids from DN team
• What would you do?
More information
• Muslim – only Allah can decide on timing
• “We accept she is dying but it should not be
from starvation”
• Significant distress
• Family and professionals
• Mention of negligence
• Concern about bereavement
• Offer treatments of “overall benefit”
• Patient wishes (assess capacity)
• Family
• No obligation to offer a treatment you do not
consider will be of overall benefit but…
• 2 opinion
• If uncertainty then go with patient wishes
• Offer s/c dextrose
• Decline to offer feeding/admission
• Why didn’t I do more?
• Unexpected outcome
• Died at home – opportunity to help
Case study
• 65 year old lady
• Recurrent gastric cancer
• Bowel obstruction and vomiting
• Sent home to die
• Request for TPN – “She is hungry”
• On s/c fluids
• What would you do?
More information
• Hindu family
• Respectful but persistent
• Hospital MDT had made their decision
• Involved nutrition lead
• 5% dextrose - ?helps later negotiation
• Admission to hospice – useful
• Home then readmitted and died
What did I learn?
• Need to understand their perspective
• That I may not be able to satisfy their request
• How I negotiate now matters for later
• If I am clear on the lack of “overall benefit”, to
be clear in communicating that
• Including other “experts” means they are in
the loop
Ethical Issues
• GMC EOLC Guidance is fairly practical
• Involve an MDT/ 2 opinion in difficult cases
• It is challenging at times
• Your decision making and documentation
may be scrutinised…..
What have we
• Identifying patients at the end of life
• Advance Care Planning - further training and
local group?
• DNACPR forms - further training useful?
• Some challenging cases