Difficult decisions at the end of life. Dr. Fiona Lisney Consultant in Palliative Medicine Fiona.Lisney@fhft.nhs.com 01753 634879

End of Life Care is everybody’s business 2

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 …….. Specialty work Under resourced This is REALLY difficult work and increasingly so: Identification Communication Allocation of resources Specialty work Under 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’ One chance to get it right 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 Disability Long-term care Mortality An opportunity for advance care planning

The last year of life Amber Care after death CPDP

Living Might Die Dying All active treatment Ceilings of Ask them what constitutes a good death………. All active treatment Ceilings of active treatment Comfort Measures only (slide courtesy of Mark Roland) 12

Identification of ‘potential’ dying Why? 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 So ….. We need to identify those that MIGHT die. Why is this so difficult? For doctors For 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 17

Prognostication Gwilliam B et al Ann 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

Clinical outcomes at the end of life Increased survival Symptom management Restore independence/function Decrease hospitalization Expected death in the place of choice (expressed preferences) Expert symptom management Holistic care – including spiritual support Support for bereaved family/carers Care of the body after death ?increased survival Prognostication Available treatment options Whether life prolongation is a) what the patient wants and b) in their best interests

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 1951-2074 Government 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 54% in hospital deaths follow an admission of ≥8 days. 86% follow an emergency admission, the LOS is 27/7

Place of death Personal/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 death Disease related factors Hospital Higher levels of co-morbidity Uncertain prognostication Home Longer disease trajectory Care Home Older Dementia/cognitive impairment

Place of death Patient choice Preferred place of care/death …..‘Home’ cancer 67% non cancer 50%

Hospital dying Large volumes Elderly Most complex Complex disease trajectory Complex uncertain prognostication Complex communication Complex cultural/religious requirements 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

Jo Wilson, TVSCN and Prof Irene Higginson for their data and slides Thank you Fiona.lisney@fhft.nhs.uk 01753 634879 Thanks to: Jo Wilson, TVSCN and Prof Irene Higginson for their data and slides