DEVELOPMENT AND STANDARDS OF PALLIATIVE CARE IN HUNGARY Hungarian Hospice Foundation Dr. Katalin Muszbek
Dec 31, 2015
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)
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”
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
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