DEVELOPMENT AND STANDARDS OF PALLIATIVE CARE IN HUNGARY

Hungarian Hospice Foundation

Dr. Katalin Muszbek

THE STATE OF ART OF

CANCER

Hungary

Leads the WHO cancer death statistics Cancer incidence 57.000 (new cases per year) 33.000 cancer deaths (0.0033 mortality rate)

second major cause after cardiovascular

MOSTLY IN HOSPITAL,

ALONE, IN PAIN,

WITHOUT DIGNITY.

END-OF-LIFE-CARE before 1991

Not a separate entitiy in national health system: oncology, geriatrics,poor conditioned nursing homes provedes care for terminally ill patients

No government policy at all, palliative care does not exist legally

No education, not included into health care provders curriculum

Other associations, national boards does not recognize its importance

DEVELOPMENT OF PALLIATIVE CARE

IN HUNGARY

1991 Hungarian Hospice Foundation 1991-1995 isolated initiatives 1995 Hungarian Hospice - Palliative Association 1995-1997 development 2000 development stops

(due to lack of regulation and finance)

Opening ceremony of Budapest Hospice House, 2002

LEGAL FRAMEWORK

1996 regulation on hospice home care 1997 new health law – first time involves

patients rights,and right to hospice care Drug availability- OK

BUT! Lack of regulation

NEEDS TO LOBBY FOR POLICY DEVELOPMENT

NEEDS FOR: Guidelines Minumum standards Education Public awereness

POLICY DEVELOPMENT – I.

2000-2002 Guidelines I. II

Hungarian Hospice-Palliative Association

collaboration with: Ministry of Health and Social Affairs National Health Insurance Patients associations Hungarian Soros Foundation National Home Care Association

GUIDELINES

Basic principles Levels of care (primary, hospice, specialist) Different settings, organisational forms, accessibility Personal and material requirements Multidisciplinary team Scope of activities and competencies Symptom control, psychosocial support Palliative care for children Efficiency, evalution Education, research Documentation, charts

LOBBY PATIENTS’ RIGHT AT THE

PARLIAMENT 2002

Interpellation at the Hungarian Parliament Collaboration of Hungarian Hospice Palliative

Association, Hungarian Cancer League and Associaion of Human Rights

Health act includes dignity and pain relief: does it act?Health Committee investigation with great publicity

POLICY DEVELOPMENT CONFERENCE

19-20 April 2004 – Organized by OSI

Collaboration WHO and Catalonian WHO demonstration Project, Death in America project

Hungarian participants: Ministry of Health, National Health Insurance, Universities, Association of Hospitals, Nurses Association, Patient Organisations, etc.

Aim: to develop action plans and sign a consensus paper

„National Palliative Care Development Plan 2004-2014”

Minister of Social Affairs at a PC Development Meeting

Policy meeting, 2004

OSI PC policy development meeting, 2004

DEVELOPMENT CONCEPT FOR HUNGARY

Aims:

A good coverage with more inpatient and home care settings

Equity of access An integrated hospice-palliative care

modell financed by NHIF

DEVELOPMENT CONCEPT

Based on general home care services and chronic bed hospitals – part of a reform

Advantages of integration Rely on existing capacities and services Accessibility will improve Rely on existing personal resources Material requirements

DEVELOPMENT CONCEPT

Minimum standards Quality monitoring system Information system Development programme

Legal framework New hospice code Regulation of Ministry of Health about

minimum standards (March 2004)

MINIMUM STANDARS

Patients with life-limiting illness,

in the terminal phase of their life

80% with cancer 20 % with HIV/AIDS and motor neuron

diseases

MINIMUM STANDARS

Multidisciplinary team (trained staff - accredited hospice training)

Core: nurse, psychologist, coordinator, physician with hospice training, training on palliative medicine, practice of 6 month.

Extended: dietician, physio, social worker, clergymen, occupational therapist)

DEVELOPMENT PROGRAMME

Complexity and continuity of care

Hospice home care

(3x50 days) Inpatient care, palliative units

(at least 10, at last 20 beds, cooperation with a hospice home care team is obligatory)

DEVELOPMENT PROGRAMME

Hospice home care 2 per county 6 per region 5 in Pest county 5 in Budapesten

Inpatient care 30 beds per county 50 beds in Budapest

DEVELOPMENT PROGRAMME

Advantage during the evaluation of the applications:

Complexity (home care AND inpatient unit) Linkage with other health care services Practice in providing hospice-palliative care

SUCCESSFULL RESULT

2 years Palliative Care project launched by the National Health Insurance

PC DEVELOPMENT 2004 - 2009

2004 - New regulation on hospice palliative care2004-2008 - Palliatve Care Development Project,

financed by NHIF2006 – PC is a part of the National Cancer Program2009 – New regulation for broadening the scope of

palliative home careBUT! Gradual and postgradual education on PC on

Medical Universities

BARRIERS OF DEVELOPMENT

Low interest of physicians Lack of gradual and postgradual education on PC

on Medical Universities Access to PC all over the country ? Financial difficulties

OSI Conference, Budapest, 2005

HOSPICE MADONNABUDAPEST HOSPICE HOUSE

Staff of HHF, 2002