1. Difficult decisions at the end of life.
Dr. Fiona Lisney
Consultant in Palliative Medicine

2. End of Life Care is everybody’s business2

3. And our business is…..
Ambitions for Palliative and End of Life Care 2015

4. ‘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

5. 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

7. 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

8. But …….. Specialty work Under resourced
This is REALLY difficult work and increasingly so:
Identification
Communication
Allocation of resources
Specialty work
Under resourced

9. 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

10. 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

11. The last year of life
Amber
Care after
death
CPDP

12. 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

13. 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

14. 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

15. Doctors overestimate survival
Median CPS – 42/7
Median AS – 29/7
Overestimated by >4/52 in 27%
Longer CPS – greater error

16. For doctors: Clinical Outcomes
Increased survival
Symptom management
Restore independence/function
Decrease hospitalization

17. Prognostic disclosure to patients with cancer near the end of life.
Lamont et al, Annals of Internal Medicine 2001; 134:
Overestimate if:
Younger patient
Female physician
Least confident about prognosis
Most experienced physicians 17

18. 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

19. 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

20. 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

21. 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

22. Where are the opportunities for systems to identify?

23. 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

24. 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

25. 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

26. 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

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

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

29. Hospital dying Large volumes Elderly Most complex
Complex disease trajectory
Complex uncertain prognostication
Complex communication
Complex cultural/religious requirements
Complex social care needs

30. 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): /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): )

31. Early identification …. ‘rectangles to triangles’
Modern concept of palliative care
Bereavement care
Curative treatment
End of life
care
Curative treatment

32. 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)

33. 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

34. Jo Wilson, TVSCN and Prof Irene Higginson for their data and slides
Thank you
Thanks to:
Jo Wilson, TVSCN and Prof Irene Higginson for their data and slides