End of Life CareSome 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 EOL

•What are your challenges?

Identifying patients at EOL

•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 you”

Barriers to ACP

Barriers to ACP

•Hope and fear

•Death as Taboo

•Professional inexperience

•Reductionist thinking - tick box culture?

ACP•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

Challenges•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

Triggers?

Triggers

•New diagnosis

•Death of a family member

•Patient request

•Prognostic indicators

•Multiple admissions

•Going to a care home

Do patients want to know?

•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 discussion

•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?

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 for?”

•“Let’s hope for the best and plan for the worst”

DNACPR

•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 futile

•“Do you want to be resuscitated?”

= proxy question….”Do you want to live?”

= for families “Do you love them?”

Linguistics affects resistance

•Recommendations for particular treatment (e.g. ‘‘I’m gonna give her some cough medicine.’’)

•Recommendations against particular treatment (e.g. ‘‘She doesn’t need any antibiotics.’’).

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”

vs

•“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

•16th June am, 17th 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

Principles

•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…

•2nd opinion

•If uncertainty then go with patient wishes

Outcome

•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/ 2nd opinion in difficult cases

•It is challenging at times

•Your decision making and documentation may be scrutinised…..

What have we covered?

•Identifying patients at the end of life

•Advance Care Planning - further training and local group?

•DNACPR forms - further training useful?

•Some challenging cases