Difficult decisions at the end of life.

Dr. Fiona LisneyConsultant in Palliative Medicine

Fiona.Lisney@fhft.nhs.com01753 634879

End of Life Care is everybody’s business

And our business is…..

Ambitions for Palliative and End of Life Care 2015

‘Dying without dignity’

Investigations by the Parliamentary and Health Service Ombudsman into complaints about end of life care

May 2015

• 12 cases• All settings• Emerging themes

Themes

• Not recognizing that people are dying or responding to their needs

• Poor symptom control• Poor communication• Inadequate out-of-hours services• Poor care planning• Delays in diagnosis and referrals for treatmen

Themes

• Not recognizing that people are dying or responding to their needs

• Poor symptom control• Poor communication• Inadequate out-of-hours services• Poor care planning• Delays in diagnosis and referrals for treatmen

But ……..

This is REALLY difficult work and increasingly so:IdentificationCommunicationAllocation of resources

Specialty workUnder resourced

Which patients?

• EOL strategy – 2008– Last year of life

• Neuberger enquiry - ‘More care, less pathway’– Last hours to days

• LACDP - ‘Five priorities of care’– Last hours to days

• One chance to get it right– Last hours to days

• CQC – EOL inspections– Last year of life (NICE) including advance care planning and access to SPC

(PEER review)– Care after death

Dying is a long term condition

A summary label OR

An abnormal health state

DisabilityLong-term care

MortalityAn opportunity for advance care planning

The last year of life

Care after death

CPDP

Amber

(slide courtesy of Mark Roland)

All active treatmentComfort

Measures onlyCeilings of

active treatment

DyingMight DieLiving

Identification of ‘potential’ dyingWhy?

• Decision making ‘in context’• ‘More likely to die than live’

• Prognosis and ‘Core philosophy’ influences:– Goals of care– Patient choice

•

So …..We need to identify those that MIGHT die.

Why is this so difficult?

For doctorsFor patients

Doctors overestimate survival

• Median CPS – 42/7

• Median AS – 29/7

• Overestimated by >4/52 in 27%

• Longer CPS – greater error

For doctors:Clinical Outcomes

• Increased survival• Symptom management

• Restore independence/function• Decrease hospitalization

Prognostic disclosure to patients with

cancer near the end of life. Lamont et al, Annals of Internal Medicine 2001; 134: 1096-1105.

Overestimate if:

• Younger patient

• Female physician

• Least confident about prognosis

• Most experienced physicians

Prognostication

Gwilliam B et alAnn Oncol.2013 Feb;24(2):282-8

• Nurses– No worse than doctors

• MDT– Better than doctors or nurses alone

• Patients – 61.4% want to know, but nearly all are over

optimistic

19

Clinical outcomes at the end of life

Increased survivalSymptom management

Restore independence/functionDecrease hospitalization

Expected death in the place of choice(expressed preferences)

Expert symptom managementHolistic care – including spiritual support

Support for bereaved family/carersCare of the body after death

?increased survival

What do we know about patients?

Patients Plan for death (‘will die’) but not serious illness (‘might die’)

Caresse 2002

Some want to discuss eolc – best initiated after recurrence and topic introduced by someone skilled, over several meetings (Barnes 2007), and best not done in hospital in an acute episode

Seamark 2012

Nearly all are over optimistic

What is important to patients when they ARE dying?

– Symptom management– Control and autonomy

• place of death• QOL > survival

– Avoid ‘burden’ to those we love– religious/spiritual needs met– A life lived

• Most desirable age to die is 81-90• Only 6% of people >65yrs want to live to >100yrs

Where are the opportunities for systems to identify?

UK projections 1951-2074Government Actuary Department , 2004

• The population is ageing

• The number who die each year will increase by 17-20% by 2030

• Expensive• 15-20% of health

care resources are spent on those in the last year of life

• If current trends continue hospitals will need >20% more beds

Increasingly complex disease trajectories

• >80% of deaths are from LTCs

• 50% of older people have 3 or more LTC

• Need to think of better ways to integrate palliative care outside prognosis

Hospital – the reality

• Those in the last year have 3.5 Hospital admissions • Lyons and Verne 2011

• 1 in 3 DGH inpatients will die within a year • Clark et al, Palliative Medicine 2014/National audit office 2008

• Increases to 1 in 2 for the socio economically deprived extreme elderly (>85 yrs) admitted to medical wards via A&E

• (Clark et al, Palliative Medicine 2014)

• 1 in 10 adult inpatients in a DGH will die during the admission • (Clark et al, Palliative Medicine 2014)

• 54% in hospital deaths follow an admission of ≥8 days.

• 86% follow an emergency admission, the LOS is 27/7

Place of deathPersonal/demographic features

• Hospital• Older• Ethnic minority groups – Chinese• Discordance between patient and family

• Home• Married• Further education• Higher household income

• Care home• Living alone

Place of deathDisease related factors

• Hospital– Higher levels of co-morbidity– Uncertain prognostication

• Home– Longer disease trajectory

• Care Home– Older– Dementia/cognitive impairment

Place of deathPatient choice

Preferred place of care/death

…..‘Home’

cancer 67%

non cancer 50%

Hospital dying

1. Large volumes2. Elderly3. Most complex

1.Complex disease trajectory2.Complex uncertain prognostication3.Complex communication4.Complex cultural/religious requirements5.Complex social care needs

Early identification and integration of Specialist Palliative Care

• Improves QOL and survival with no cost difference

• (Higginson et al, Lancet RespMed Dec 2014;2(12):979-987/Temel et al, NEJM 2010;363:733-42)

• Doubles the odds of dying at home • (Gomes et al, Cochrane database,2013.June

6;6:CDoo7760)

• Halves AE attendances for those in the last month of life

• (Hensonet al, J Clin Onc 2015Feb 1;33(4):370-376)

Early identification …. ‘rectangles to triangles’

Modern concept of palliative care

Bereavement care

Curative treatment End of life care

Curative treatment

Modern definitions of palliative care

• an approach applying to life-threatening illness and applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life (WHO)

• provides an extra layer of support with relief from the symptoms, pain, and stress of a serious illness (Meier, D)

Summary• Early identification desirable but is specialist work

• Uncertainty will always remain

• Communication is therefore complex – so hold on to Individualised care

• Early integration with specialist palliative care improves outcomes for patients and families

• Specialist palliative care is under resourced in Hospitals

Thank you

Fiona.lisney@fhft.nhs.uk01753 634879

Thanks to: Jo Wilson, TVSCN and Prof Irene Higginson for their data and slides