Caring for people who are dying

Reflections on the Liverpool Care Pathway (LCP)A doctor’s perspective

Dr Rosalie DunnMacmillan Palliative Care GP Facilitator

NHS Lanarkshire

Background to LCP

• Keri Thomas Macmillan Facilitator• Gold Standards Framework: Communication

Coordination, Continuity of care, Control of symptoms, Care for the Carers, Continuing education

• John Ellershaw Professor of Palliative Medicine Marie Curie Institute Liverpool

• Care of the Dying

Liverpool Care Pathwayfor the Dying Patient

• A framework to provide the best possible care in the last few days of life

• Sensitive communication with family/carer is essential• Decision by senior doctor and care team

– Not always an easy decision especially in non cancer patients

To bring hospice standard of care to all• Only for people whose condition is not reversible, all

reversible causes having been excluded (CELT Forth Valley)

• Patients should be involved in decisions, if possible

Newspaper headlines

• Sentenced to death on the NHS

• Care? No, this is a pathway to killing people that doctors deem worthless

• End of life row ‘causes public fear’

• Hospitals treating the Liverpool Care Pathway as just another ‘thing to do’

• How I saved my father from the Liverpool Care Pathway two years after mother endured ‘agonising’ death on the system

Newspaper headlines

• Police probe the death of mother on ‘Care Pathway’: son claims ‘cruel’ withdrawal of fluids and food was ‘attempted murder’

• District Nurse put 90 year old father on the Liverpool Care Pathway in his own HOME without consulting his family

• Moments after coming off the Care Pathway, my mother was enjoying a G+T and scrambled eggs - and lived for another seven precious weeks

What does/does not happen?

• LCP is not designed to hasten death• No need to withdraw fluids/nutrition –

balance of good and harm (e.g. fluid in lungs). Keep mouth moist to avoid discomfort

• Family/carer should always know about LCP

• Difficult to predict death, so possible to start LCP and stop if recovery begins

• None of the recent media coverage relates to Lanarkshire patients

Where we use the LCP

• Community• Care Homes• Hospitals

Criteria for use of the LCPThe multiprofessional team has agreed thatthe patient is dying and two of the following

must apply

• The patient is bed bound• Only able to take sips of fluid• Semi-comatose• No longer able to take tablets

• All personnel must sign paperwork• Three sections• Initial assessment ,with 11 goals for

achieving maximum comfort levels – NB goal 10 plan of care explained and

discussed with patient and/or family– goal 11 family/other express

understanding of planned care

LCP

Section 2 Ongoing assessment

• 14 goals to ensure patient is symptom free and the family/carer are prepared for the patient’s imminent death

• Including holistic assessment of all symptoms and covering psychological and spiritual aspects and especially attending to the needs of the family/carers

Section 3 Care after death

• 7 goals

• all procedures following death to be discussed and bereavement leaflet to be supplied to family/carer

Variance analysis

• If a goal on the LCP is not achieved this should be coded as a ‘variance’

• Clinicians are encouraged to note what variance has occurred and why. What action was taken and the outcome

David Brown’s experience

Audit of family/carer involvement in the LCP in Lanarkshire

• Was the family aware of the diagnosis?• Yes 88% No 2% Not recorded 10%

• Did the family recognise the person is dying?• Yes 88% No 2% Not recorded 10%

• Was the plan of care explained to and discussed with the family?

• Yes 87% No 1% Not recorded 11%

• Did the family express understanding of planned care?• Yes 82% No 1% Not recorded 17%

Areas to address

• Living Wills

• Anticipatory Care Plans: covering Next of Kin, Preferred Place of Care, DNACPR, Guardianship/Power of Attorney, Just in Case prescriptions

• Public Debate with media involvement

Implications for the future

• Dame Julia Neuberger to lead major enquiry into LCP acceptability in England

• Lanarkshire and Glasgow subgroup responsible for reviewing End of Life guideline ?should consider new title e.g. “End of life Priorities”

• Far earlier discussion of issues around Death and dying