How to do a Palliative Care Needs Assessment for your Country

1. How to do a Palliative Care Needs Assessment for your Country Irene J Higginson www.kcl.ac.uk/palliative

2. Defining need • Pragmatic ways to estimate need • Epidemiological data (and mistakes to avoid) • Comparison with services available • Case example : a London strategy • Evidence of effectiveness

3. Need • For health - and social - care • Many sociological definitions ( see for example Bradshaw’s taxonomy of need)

4. Need: who decides and how? • What an individual feels they want (felt need)? • What an individual demands (expressed need)? • What a professional thinks an individual wants (normative need)? • How we compare with others areas or situations (comparative need)?

5. A pragmatic approach to needs assessment: • NHS Executive defined need for health care - as ability to benefit from care - three components Epidemiology Effectiveness and cost-effectiveness national and local Services available

6. Epidemiology: getting to the numbers who might need palliative care • Numbers and causes of death can give indication of need for palliative care - • Better if coupled with information on symptoms, emotional, social and spiritual problems • Note, have to allow for: • Data inconsistencies and gaps (e.g. cause of death) • Different diseases have different patterns of progression

7. Deaths in England and Wales, 2002 recorded death registrations: • Total 540,000 deaths in 52 million population • i.e.: 10.4 deaths per 1,000 ‘average England and Wales’ population • Like your countries, circulatory system is number one cause (42% of deaths), cancer second (25%) (Source: Office of National Statistics, 2002 population and mortality data)

8. Predicting need • So in UK, an area of 250,000 population will have around 2,500 deaths per year (200 per month) • 1,100 will be from circulatory disorders • 650 will be from cancer • 75% of those who die will be aged over 65 years

9. How many deaths will you have?

10. Do’s and don’ts when using death data • If possible get the ACTUAL NUMBERS • Rates can be misleading - and crude (rather than age standardised) rates are what you need here • Don’t add rates together • Recorded cause of death is subject to fashions, country and cultural differences • It can be inaccurate in older people where there are multiple causes

11. Therefore - when using death data • Get an epidemiologist to do estimates • Be careful – and use ranges if unsure • Train doctors in your countries to accurately record cause of death • Try to get accurate statistics Don’t worry too much there will still be plenty of need

12. Numbers of deaths are not enough – how many people who die from cancer or other conditions have symptoms and problems that would benefit from palliative care

13. Prevalence of ‘symptoms’ in the last year of life Percentage with symptom Source: Higginson I. Epidemiologically based needs assessment for palliative and terminal care, Radcliffe Medical Press 1997

14. Among 3,000 cancer deaths, estimated numbers experiencing problem in last year of life (for England and Wales, would be within population of just over one million) Source: Higginson I. Epidemiologically based needs assessment for palliative and terminal care, Radcliffe Medical Press, 1997

15. Among 7,000 non-cancer deaths -estimated patients with problems in last year of life (for England and Wales, would be within population of just over one million) Source: Higginson I. Epidemiologically based needs assessment for palliative and terminal care, Radcliffe Medical Press, 1997 Department of Palliative Care and Policy

16. Possible trajectories – will vary

17. Palliative care: levels may need these for different conditions • approach - employed by every doctor and nurse (suggests major need for education) • procedures and techniques - important adjuncts (specialists in anaesthetic techniques, radiotherapy for bone pain) • specialist - core speciality of units and services providing multi-professional care in hospices, in-patient units, home, hospital teams, day care.

18. The numbers of people with need can be compared with the numbers of people receiving services to estimate how well need is being met

19. A case example: developing a London Strategy for Palliative Care

20. London, UK • Population - 7 million, 14% of the of England • High deprivation and poorer health status (2 million), relative affluence (2.3 million) • 1991 census, 80% white, 8% Black, 10% Asian and 2% other. At a borough level, black or minority ethnic groups range from 4 - 45%. Diversity increasing. • Ageing - increasing.

21. Main causes of yearly 65,000 deaths in London

22. Where would palliative care help? • Progressive cancers, increasingly chronic. • Progressive non-malignant diseases. E.g. heart failure, stroke, chronic obstructive pulmonary disease, motor neurone disease, ALS, dementia and AIDS/HIV. • Children's terminal and hereditary diseases, including degenerative disorders such as muscular dystrophy and cystic fibrosis. • Have different trajectories.

23. Almost 60,000 patients each year would benefit from good palliative care in LondonAt least an equal number of carers and family memberswould also benefit

24. An ‘average’ GP practice of 2,500 population will have 24 deaths per year (2 per month) of whom 20 would have a period of progressive illness.A hospital serving an area of 250,000 (e.g. Hillingdon) would in that area have each year: 560 cancer deaths, 1230 from circulatory diseases, 300 from respiratory disease, 60 from other diseases, where patients and carers would benefit from palliative care.

25. Specialist palliative care services • In-patient - 17 hospice or units - 410 beds • 11 voluntary - 1/3 funded by NHS • 6 (86 beds) NHS (20%, less than national average) • Provision rank: 3rd out of 8 for n. of beds per million population, 4th out of 8 for n. of patients admitted

29. Need versus services accessed

30. Estimated yearly numbers of cancer deaths, cancer deaths with pain, and cancer patients who receive different services in London region.

31. Estimated yearly numbers of non-cancer deaths, non-cancer deaths with pain, and who receive different services in London region

32. What other data is useful?

33. Also use information on patient wishes (e.g. for home care) and effectiveness • NHS Executive defined as ability to benefit from care - three components Epidemiology Effectiveness and cost-effectiveness national and local Services available

34. Evidence of effectiveness - • Journal of Pain and Symptom Management 2003;25:150-168 – the first meta-analysis showing the effectiveness of palliative care (plus an economic evaluation) • www.nice.org.uk - International systematic literature review of the effectiveness of service configurations for supportive and palliative care in cancer, for UK government • Local surveys and views may also be used

35. Evidence of effective models of palliative care - • Palliative home care teams – good evidence of benefit to patients, families and in training others, from many studies in many countries • In-patient hospices, palliative care services – some evidence of benefit to patients and families • Hospital based palliative care teams – some evidence of benefit to patients and families and of improving practice in the hospital • Day care units, evidence that some patients like it, and some lesser use of other community services

36. Summary • Epidemiological data can help in planning need for palliative care • Based on number of deaths and likely prevalence of symptoms • Can estimate numbers within a population with problems and compare with services received – do this with caution • Local data on experience / services also important • Evidence of effectiveness completes the picture