The Princess Alice Hospice Certificate in Essential Palliative Care Pan-Birmingham Cancer Network Autumn 2009 Course

1. The Princess Alice Hospice Certificate in Essential Palliative CarePan-Birmingham Cancer NetworkAutumn 2009 Course

2. Introductory Session for PAH courseApril 2009 • Improving end of life care and generalist palliative care • Introduction to the PAH course and course materials • The written paper, orals and exam day details • Summary and questions

3. Vision of End of Life care • The Pan Birmingham Palliative Care Network aims to move towards a situation where any patient, from diagnosis to the advanced stage of disease, in any setting, at any stage, lives well and dies well in the place and in the manner of their choosing .

4. The 1+% Rule Vs The 100% Rule Approx 1% die each year- 1% of popn are in the last year of life • approx 530,000 deaths p.a. • cause of death - 25% cancer - 19% heart disease • 11% strokes and related disorders • 14% respiratory disease - 31% other • 84% (448,307) of deaths are people 65 or over (ONS 2003) Office of National Statistics summer 2004 Statistics relate to 2003

5. Illness trajectoriesGP’s Workload - 20 Deaths / GP / yr A 5 Cancer 6 Dementia,frailty and decline 1-2 Sudden death B 7 Organ failure C

6. Who should provide Palliative Care • Hospices? • Hospital Palliative Care Teams? • Hospice at Home Teams? • MacMillan Nurses? • Marie Curie Nurses? • District Nurse Teams? • GP’s?

7. Beer Mat Calculation • 200 GPs in BSMH area. • 20 deaths per GP • 20 x 200 = 4000 • 25% cancer = 1000 • 10 CNSs = 25 – 30pts. each = 300 • Dayhospice = 100pts. / week. • Referrals per year 750-ish.

8. SBPCT Calculation • 3000-ish deaths per year • 2039 with palliative care needs! • Hospice seeing 650 SBPCT patients. • 300-500 patients on QoF register at any one time

9. 1. Improving Generalist Palliative Care 1. Workforce - GPs, DNs, hospital staff, NH staff, carers (family and agency) 2. Education and training 3. Working to plans / protocols eg Preferred Place of Care, GSF meetings, End of Life Care Pathways and Drugs. 4. Specialist palliative care support, advice, services when needed

10. Clarification of Terms • End of Life care • ‘Care that helps all those with advanced progressive incurable illness to live as well as possible until they die’ • Patients living with the condition they may die from- months/ years • All 3 types of patient (cancer, organ failure ,frail elderly /dementia ) • ‘Ante-mortum’ care like ante-natal or early life care Diagnosis End of Life Care Death

11. Clarification of Terms • Supportive Care • Helping the patient and family cope better with their illness • not disease or time specific, ‘less end stage’ Diagnosis End of Life Care Supportive Care Death

12. Clarification of Terms • Palliative care • holistic care (physical, psychological, social, spiritual & emotional) • specialist and generalist palliative care • Some regard as overlapping or following curative treatment Bereavement Support Diagnosis End of Life Care Supportive Care Palliative Care

13. Clarification of Terms • Terminal care/ Final days • Diagnosing dying-care in last hours and days of life Bereavement Support Diagnosis End of Life Care Supportive Care Palliative Care Terminal Care

14. Cancer High Possible hospice enrollment Function Low Death Often a few years, but decline usually a few months Time Onset of incurable cancer “Cancer” trajectory, diagnosis to death

15. High (mostly heart and lung failure) Function Low Death ~2-5 years, but death usually seems “sudden” Begin to use hospital often, self-care becomes difficult Time Organ system failure trajectory

16. High Dementia/frailty trajectory Function Low Death Time Quite variable - up to 6-8 years Onset could be deficits in ADL, speech, ambulation

17. Current Inequity

18. When might someone need supportive/ palliative care or be in the last year of life? • The Surprise question- ‘would you be surprised if the pt were to die in the next year?’ • Patient is in need of support or chooses ‘non curative’ care • Clinical Indicators- Prognostic Indicators Guidance Paper

19. Where people die-

20. BSMH CPCT Patients Place of Death 2008/9 (first 6 months) and 2007/8 2008/9 (first 6 months): Total deaths = 310 2008/9 (first 6 months): New Patients = 353 If Home defined as Home + Reg NH + LA res + Temp res = 150 (48%) 2007/8: Total deaths = 576 2007/8: New Patients = 684 If Home defined as Home + Reg NH + LA res + Temp res = 245 (42%)

21. WHAT PATIENTS WANT • Control of symptoms • Co-ordination of services facilitated by key worker • Human being/dignity • Information to be available and timely • Communication-skilled and face to face • Psychological support-patient,family and friends

22. Palliative Care History • Hospices were originally places of rest for travellers in the 4th century. • It was first applied to the care of dying patients by Mme Jeanne Garnier who founded the Dames de Calaire in Lyon, France, in 1842. • The name was next introduced by the Irish Sisters of Charity when they opened Our Lady's Hospice in Dublin in 1879 and St Joseph's Hospice in Hackney, London(1905). • Dame Cicely Saunders is regarded as the founder of the hospice movement. • The modern hospice originated in the United Kingdom after the founding of St. Christopher's Hospice in 1967

23. Modern Hospice Movement HOLISTICMULTIDISCIPLINARYPATIENT, FAMILY AND CARERSGROWING SCIENTIFIC BASIS • In the UK in 2005 • 220 hospices for adults and 33 for children, offering 3,411 beds. • 358 community palliative care teams, one third based in hospices, as well as 361 day centres • palliative care teams in nearly all larger hospitals. • 2000 89 countries have initiatives operational.

24. Recent policy developments in End of Life Care • Building on the Best and the NHS EOLC Programme 05-08 • The first DoH National End of Life Care strategy - July 08 • Darzi NHS Review includes EoLC • All SHAs to develop EoLC Strategies • PCTs including EoLC in their Local Delivery Plans – by End Sept 08 to start April 2009.

25. Recent policy developments in End of Life Care • Holistic Needs Assessment – Pan Birmingham Cancer Network

26. Education- PAH courseAims of course • To improve care of patients • To enable all health professionals to practise the essential principles • To raise the profile of palliative care • To engender confidence in HCPs • To foster communication between HCPs

27. Know your ceiling!