PALLIATIVE CARE: ACHIEVEMENTS AND CHALLENGES FOR PUBLIC HEALTH

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1 CAMPUS GROSSHADERN CAMPUS INNENSTADT PALLIATIVE CARE: ACHIEVEMENTS AND CHALLENGES FOR PUBLIC HEALTH Prof. Dr. Claudia Bausewein PhD MSc

2 Cicely Saunders ( ) Founder of the modern hospice movement Nurse in World War II Trained as social worker Medical School Research on Morphine as analgesic Founded the first modern hospice, St. Christopher s in London, in 1967

3 Total pain spiritual physical psychological social Cicely Saunders 1963

4 Hospice and Palliative Care high-person-low-technology pain and symptom management psychosocial and spiritual care commitment to continuity of care individual care integration of volunteers coordination and supervision research teaching and training Dame Cicely Saunders 1977

5 Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. WHO 2002

6 Palliative care worldwide

7 Palliative care concepts

8 An idea put into practice

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10 Current situation in Germany Palliative Care Units Always part of hospital Physician-led Aim: symptom management and discharge (Ø 12 days) Funding: health insurances Inpatient Hospices Independent, free-standing Nurse-led, medical input from GPs Aim: long-term care for terminally ill patients (Ø 20 days) Funding: mixture of health insurance, long-term care insurance & hospice

11 Development of hospices & PCU

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13 Current situation in Germany Palliative Care Consult Services Often, not always in connection with a PCU Multiprofessional Number not known Specialist palliative home care Since 2007 right of every patient (social law) Teams with doctors and nurses Realisation challenging No clear overarching concept Planned 320 teams for Germany (1 team/ inhabitants) Currently 225 teams

14 Area coverage of specialist palliative home care Dark blue full coverage Light blue 30 teams in federal state Grey no teams Red negotiations with health care insurances

15 Challenges for the future Who receives palliative care? How is palliative care provided? When should palliative care start?

16 Challenges for the future Who receives palliative care? How is palliative care provided? When should palliative care start?

17 Who receives palliative care? D UK

18 Leading causes of death Mathers & Loncar, PLoS Medicine 2006

19 UK deaths and potential palliative care needs Low estimate Diagnoses (ICD-10) Primary diagnoses on death certificate: cancer, chronic heart, kidney, lung and liver disease, neuro-degenerative disease, Alzheimer, HIV/AIDS Proportion 63% Intermediate estimate - lower limit Intermediate estimate - upper limit Maximum estimate Low estimate & Alzheimer, dementia, chronic kidney disease Stage V as secondary diagnoses on death certificate 69% 75% Secondary diagnoses as low estimate 82% All deaths (without acute deaths) 97% Murtagh & Bausewein, Palliative Care Funding Review 2011

20 Population in Germany ,8 Mio 22,3 Mio 83 Mio. 77 Mio.

21 Births and deaths 2010: Dying 2030: Dying German Federal Statistics Office 2011

22 Place of death 47% currently die in hospital no data on home death deaths in hospitals Simon & Bausewein, Pub Health 2012

23 Future developments Until 2030: increase in cancer incidence by 50% (Deutsche Krebshilfe), in new cancer diagnoses Increase in chronic disease 2030: appr. 2 Mio. people with dementia (2010 1,1 Mio.) Medical advances increase life expectancy but also longer life with illness (UK: men appr 14,7 years, women 16,9 years with bad health (National for Council Palliative Care 2012)

24 The palliative care patient in 20 years suffers from cancer is older... Suffers more often from dementia might have a different religious and cultural background lives longer with chronic illness

25 Challenges for the future Who receives palliative care? How is palliative care provided? When should palliative care start?

26 Palliative Care Provision Generalist palliative care Both in home care and inpatient setting No clear defintion No reimbursement Specialist palliative care Inappropriate funding State Governement Victoria.Strengthening Palliative care: Policy and stratetic directions

27 Need for palliative care Extrapolated from actual deaths Patients with malignant disease Patients with non-malignant disease Recommended referrals for assessment 90% 50% Ongoing consultative capacity 70% 30% Direct care 20% 10% Palliative Care Service Provision in Australia: A Planning Guide. 2003

28 Need for palliative care and hospice inpatient beds Country Beds/ 1 Mio Inhabitants Germany (2004) 50 Austria (2004) 60 Ireland (2001) Switzerland (2008) Germany (2030)?

29 Future palliative care provision Hospital support teams For every hospital Specialist palliative home care Full coverage, comparable structures and funding Day care Day hospices Palliative care outpatient clinics Palliative care units with quality standards Hospices

30 Challenges for the future Who receives palliative care? How is palliative care provided? When should palliative care start?

31 Early Integration of Palliative Care newly diagnosed metastatic non smallcell lung cancer stage III b ECOG 0-2 standard oncologic care alone early palliative care integrated with standard oncological care palliative care when needed 3 weeks after diagnoses, at least monthly Temel J. et al N Engl J Med. 2010

32 Results Improved quality of life (98.0 vs. 91.5; p=0.03) Less depression (16% vs. 38%, p = 0.01). Fewer patients received aggressive end-of-life care (33% vs. 54%, p=0.05) Survival: 11,6 vs. 8,9 months (p=0.02) Temel J. et al N Engl J Med. 2010

33 Disease trajectories cancer Chronic kidney disease, conservatively managed Cardiorespiratory failure Frailty Murray, S. A et al. BMJ 2008;336

34 Palliative Care Concepts American Thoracic Society 2008

35 When does palliative care start? Palliative Care according to needs and not diagnoses or prognoses

36 When does palliative care start? Palliative Care according to needs and not diagnoses or prognoses Screening & regular evaluation of palliative care needs

37 When does palliative care start? Palliative Care according to needs and not diagnoses or prognoses Screening & regular evaluation of palliative care needs Disease related indicators for screening

38 Indicators for assessment of palliative care needs Tumour NSCLC Melanoma Sarcoma Ca Pancreas Ca breast Ca prostate stage IIIb IV IV alll metastases/ recurrence & systemic chemotherapy recurrence/ metastases (refractory to Doxotacel) Gärtner et al, Supp Care Ca 2011

39 General quesions 1 general clinical sign Boyd & Murray BMJ 2010

40 COPD Chronic heart failure Kidney disease Boyd & Murray BMJ 2010

41 Assessment of palliative care needs

42 Palliative Care Concepts American Thoracic Society 2008

43 What do we need to meet these challenges?

44 Qualification of professionals Palliative Care as compulsory subject in medical and nursing schools, for social workers, chaplains, physiotherapists etc. Sufficient coverage But Palliative Care as career? Only symptomatologists? How do we teach attitudes?

45 Qualification of doctors Palliative Medicine as subspeciality For generalist palliative care Training in form of courses as already provided Palliative Medicine as speciality In addtion to subspeciality 2 years general medical training & 3-4 years specialist training Clinical leads, complex cases, teaching, training, supervision, Similar for other professional groups

46 Palliative care research Burning questions Evidence based symptom control Patients wishes (e.g. preferred place of care, place of death) Needs of underserved groups Social, cultural, spiritual and ethical aspects Qualification in research methods Research networks Research funding

47 Ethical issues Physician assisted suicide? Legalisation of active euthansia? Euthanasia as part of palliative care?

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49 Association for Palliative Medicine It does not depend on predicting the future but to be prepared for the future. Perikles, griech. Staatsmann, v.chr.