PALLIATIVE CARE EPIDEMIOLOGY

Maurizio Mannocci Galeotti Firenze Italy 1 04/06/2008

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• Overall life expectancy increasing in all developed countries, either in developing ones • “we live longer but more sick” • The changing pattern of disease towards serious chronic diseases • Older people are more likely suffer from MULTIORGAN failure towards the end of life • Increased longevity is inevitably accompanied by longer period of disability before e-o-l? may be not. • High development of symptoms control even at E-o-L

2 04/06/2008 Population [email protected] vs. End-of-Life care

Population ageing: % aged 60 and over source UNPD 2002 40 30 20 10 0 1950 WORLD

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1975

2000

MORE DEVELOPED REGIONS

2025

2050

LESS DEVELOPED REGIONS

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MAIN PREDICTED CAUSES OF DEATH FOR 2020 AND PREVIOUS CAUSES IN 1990 PREDICTED PREVIOUS RANKING RANKING DISORDER 2020 1990 Ischaemic heart disease 1 1 Cerebrovascular disease (including stroke) 2 2 Chronic obstructive pulmonary disease 3 6 Lower respiratory infections 4 3 Lung, trachea and bronchial Cancer 5 10 source: Murray & Lopez 1997

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Changing social structure vs. End-of-Life care • The number of informal CAREGIVERS (in the past traditionally women) are decreasing, due to the following trends: – Families are becoming smaller (“mono nuclear”, with one maximum two children) – Migration, divorce, urbanization – Increasing of working women out of home

• Challenge for Health care system to meet these new needs.

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• People living with chronic (life-threatening) diseases face different problems, but in the last year of life many symptoms and problems are similar. • Although with different Physiopathology, Intensity and frequency. • Last but not least, the concern and interpretation of quality of life is highly individual Different chronic illnesses = different needs? 6 04/06/2008

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FAMILY ANXIETY PATIENT ANXIETY VOMITING CONSTIPATION TROUBLE BREATHING LOSS OF APPETITE PAIN DEPRESSION SLEEPLESSNES CONFUSION 20

30

40

50

60

OTHER TERMINAL ILLNESSES

70 CANCER

Prevalence of symptoms in the last year 7 04/06/2008 [email protected] source: Higginson 1997

80

90

• To communicate with familiar and health professionals • To cope with disability • To control symptoms • To express bad feelings • To support caregiver • IN PEOPLE LIVING WITH CANCER OR NOT

Needs at The End of Life [email protected]

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• Course of illness due to cancer easier to be predicted, uncertainly fort the others chronic life-threatening diseases • Such as: Heath failure, Liver failure, chronic obstructive respiratory disease, neurological diseases (ALS, MS, Alzheimer), AIDS Different needs [email protected] caused by uncertain prognosis

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A – CANCER SHORT PERIOD OF EVIDENT DECLINE WORSENING BY FREQUENT AND SHORT STEPS TIME = 1 / 3 MONTHES

Models 10 04/06/2008

of the illness trajectory for common serious [email protected] chronic diseases. Source Lynn & Adamson 2003

B – LONG TERM LIMITATIONS WITH INTERMITTENT SERIOUS EPISODES HEART FAILURE OR CHRONIC OBSTRUCTIVE RESPIRATORY , Die Suddenly With Little Warning After Deterioration TIME = > YEAR

Models 11 04/06/2008

of the illness trajectory for common serious [email protected] chronic diseases. Source Lynn & Adamson 2003

C – AIDS PROLONGED DWINDLING GRADUALLY DEPENDENT YET UNAWARE OF CLOSE FAMILIAR TIME = MANY YEARS

Models 12 04/06/2008

of the illness trajectory for common serious [email protected] chronic diseases. Source Lynn & Adamson 2003

DIFFERENT TRAJECTORIES HOWEVER SIMILAR NEEDS FOR PATIENT & THEIR FAMILIES

Models 13 04/06/2008

of the illness trajectory for common serious [email protected] chronic diseases. Source Lynn & Adamson 2003

CHANGING PALLIATIVE CARE [email protected] STARTING POINT

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• fifty-two million people die each year • it is estimated that tens of millions of people die with unrelieved suffering • about five million people die of cancer each year, to which can be added the higher numbers of patients dying with AIDS and other diseases who might benefit from palliative care • that many people die with unnecessary or untreated suffering has been well documented in many studies and published in hundreds of scientific papers and reports

THE NEED FOR [email protected] PALLIATIVE CARE 15 04/06/2008 IAHPC 2008

• in developed and developing countries alike, people are living and dying Ø in unrelieved pain Ø with uncontrolled physical symptoms Ø with unresolved psychosocial and spiritual problems Ø in fear and loneliness

• this is the suffering that could be helped or prevented with palliative care

THE NEED FOR [email protected] PALLIATIVE CARE 16 04/06/2008 IAHPC 2008

• the World Health Organisation (1990) and the Barcelona (1996) declarations both called for palliative care to be to be included in every country’s health services • the relief of suffering is an ethical imperative o every patient with an active, progressive, faradvanced illness has a right to palliative care o every doctor and nurse has a responsibility to employ the principles of palliative care in the care of these patients

THE NEED FOR [email protected] PALLIATIVE CARE 17 04/06/2008 IAHPC 2008

• Physician o Reluctant to refer, Late referral o poor prognostication o lacks communication skills to address end-oflife issues o doesn’t understand or believe in palliative care o loss of control, loss of income o lack of institutional standards for end-of-life care

PC and Equity 18 Service Coverage 04/06/2008 [email protected] Barriers to palliative care

• Patient o Believe prognosis better than what they are told o Unrealistic expectation of disease response o Patient-family disagreement about treatment options o Lack of advance care planning

PC and Equity 19 Service Coverage 04/06/2008 [email protected] Barriers to palliative care

• Social factors o Ethnic minorities, language barriers o Rural communities o Poor or underprivileged

• Access factors o High cost of care, treatments and medications for the public Heath Service o No physician reimbursement for palliative care in developing countries o Laws and regulations restricting or prohibiting the use of opioids

PC and Equity 20 Service Coverage 04/06/2008 [email protected] Barriers to palliative care

THE PARTNER ORGANISATIONS

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