Fr. Dr Piotr Krakowiak, prof. UMK
UNIQUE HISTORY OF SOLIDARITY
IN HOSPICE-PALLIATIVE CARE.
TOWARDS COMPASSIONATE COMMUNITIES
IN POLAND AND EUROPE
National Chaplain
of Hospices
BRITISH INSPIRATIONS FOR MODERN HOSPICE MOVEMENT SINCE 1960
The modern hospice movement started in St. Christopher's
Hospice, London in 1967. From there it spread rather quickly
within the United Kingdom and to many other countries worldwide.
Dame Cicely Saunders has been named the Founder of the
Modern Hospice Movement. She was a great friend of Poles!
She received her first donation for a future hospice house
from Polish Jew, David Tasma, who was dying
under her special care in London – he told her
it would be for a future „window in the house for dying”
Religious and spiritual care has been
fundamental for holistic care offered
by interdisciplinary hospice team in London
Development of NGO's as a part of Democratic Changes in Poland since 1970…
1981 – St. Lazarus Hospice, Krakow. First NGO in PL
from the short time of freedom - during 2 years
of Solidarity Movement. 1996 - Stationary Hospice.
1983 – Home Care Hospice Teams; Gdansk
model of palliative care - effective, done with
cooperation with parishes and religious orders
- all based on voluntary work of doctors, nurses,
social workers and people of good will.
1983 - 1989 – over 70 home care services.
Most of them run by the parishes, religious orders
or groups of lay volunteers with support of the Church
1990 RENOVATION OF Caritas Poland –
The Catholi Church charitable organization working on
Behalf of Bishops’ Conference in Poland since1990.
2019 – 587 PC services with most developed the home care model: 404 mobile
teams for adults and 66 teams for children across Poland (EAPC Atlas 2019)
Difficult and fascinating years of transformation 1990-2000
Caritas is the largest charity organization in Poland.
It consists of 44 diocesan Caritas organizations,
which act at the regional level, and Caritas Poland
- responsible for national campaigns and providing
international aid.
Hospice-palliative Care in Poland
- Forum Hospicjów Polskich - since 1991
- dedicated mostly for catholic hospices runned
initially by volunteers. They do not cooperate
with palliative care centers and new centers
which are combining 'spirit of volunteerism'
with professionalism.
1990’s we have started in Poland an international
initiative - Fields of Hope - originally from
Edinburgh Scotland - adapted in Cracow, Gdańsk,…
New Challenges For New Century - Poland in XXI century
HPC in Poland - in 1998 HPC has been implemented to the
Health Care System in Poland - first in the Eastern Europe and one
of the first in whole Europe. By year 2000 we have had over 200 HP Care centers
More HPC centers have been created - professionalism only instead of
the 'blend' of paid workers with volunteers. Often - we do not need volunteers
any more - they are the burden to our professional procedures.
Since 2003 – Law regarding volunteering and NGO’S and 1% Income Tax Rule
New Challenges for New Century - Poland and Europe in XXI century
Since 2002 - PROMOTION OF HOSPICE & PALLIATIVE CARE as a duty of–
National Chaplain of Hospices by Catholic Bishop Conference in Poland
Coordination of more than 200 HP Care centers in Poland – most of them
strictly connected with the Catholic Church – parishes, orders, Caritas…
2004 - HOSPICJUM TO TEŻ ŻYCIE 1 NATIONWIDE CAMPAIGN (TV, RADIO,…)
05.11. 2004 – ANGELUS – ROME; JOHN PAUL II, IMPORTANT WORDS OF
ENCOURAGEMENT AND RECOGNITION OF HOSPICE & PALLIATIVE CARE
BROADCASTED BY ALL POLISH TV & RADIO STATIONS
CHANGING NEGATIVE STEREOTYPE OF „HOSPICE”
INTO POSITIVE WAY OF THINKING ABOUT END-OF-LIFE-CARE
“Hospice is life too”
GDAŃSK & POLAND
HOSPICE IS
HORRIBLE
PUBLICATIONS AND MULTIMEDIA TOOLS FOR SOCIAL EDUCATION
AND TRAINING OF VOLUNTEERS: PUPILS, STUDENTS, ADULTS,
ELDERLY; PART OF IT IS ALSO AVAILABLE ONLINE
I LIKE HELPING PROGRAM 2007-10
RECEIVED SPECIAL BLESSING
FROM POPE BENEDICT XVI
The editors’ intention is to present the history of
the establishment of palliative and hospice care
in Poland as broadly as possible: by identifying
its sources and inspirations, through the
personal experiences of people involved in end-
of-life care and the stories of particular palliative
and hospice centres and the organisations
supporting them.
In Solidarity. Hospice-palliative Care In Poland, E-book, 2015
www.academia.edu/27253218/In_Solidarity._Hospice-Palliative_Care_in_Poland
http://hospicefoundation.pl
SOCIAL EDUCATION
- NATIONWIDE CAMPAIGNS
medical events, concerts, debates, meetings, performances…
around 600 information centres in media, tv, radio, Internet, flyers,
folders, posters, city lights, billboards, spots
CARE OF THE ORPHANED CHILDREN AND HEALTHY
SIBLINGS OF ILL CHILDREN
scholarships school accessories summer camps Christmas presents the Children’s Day presents
By 2019 the Orphaned Children’s Fund
helped about 11,500 children
CARE OF THE ORPHANED CHILDREN AND HEALTHY
SIBLINGS OF ILL CHILDREN
“Tumbo Helps” Programme – inspiration from Winston Wish, UK
Programme intended to help children and young people during bereavement as
well as their parents, guardians and teachers
accompanying them in these difficult days.
The website www.tumbopomaga.pl
gives the necessary information and
professional advice on how to go
through mourning consciously and
to the end in order to be able to rebuild
one’s life and regain a sense of security.
www.winstonswish.org.uk - cooperation
2003-2011: good experiences – cooperation
with detention centre in Gdansk – semi-open
2008-2009: National pilot program, with 15
hospices and 15 semi-open detention
structures, has given a chance to the best,
carefully selected prisoners, who became
hospice volunteers in stationary hospices
2009 - Program received first prize from
Council of Europe „THE CRISTAL SCALE”
for the best program of re-adaptation of
prisoners into the society: WIN-WIN FOR ALL
2015: More than 40 hospices in Poland
continue cooperation with local detention
centres as well as many Nursing Homes too
2020: only 3 HPC and detention centres
cooperate – change of rules by Government
Convicts/prisoners as hospice volunteers
Answer to growing needs in end-of-life care?
Demographic changes in Poland – one of the fastest ageing
societies in Europe
Not everything is nice and smooth - emerging problems in Poland - solutions
Health and social care (broken in HP Care recently in 2008 - exclusion of social
workers from HP teams - and we see consequences of lack of cooperation there!).
GROWING PROBLEMS OF CARE – ESPECIALLY AT HOMES
To answer for these needs - idea of common,
ecumenical work - TEXTBOOK FOR INFORMAL CAREGIVERS
with 3 logos of Caritas, Diakonia and orthodox Eleos.
Textbook & training materials (pictures, step-by-step DVD)
offered for all those who need to care for their
elderly and fragile at homes – long term & palliative care
Various church communities train volunteers;
ecumenical - mostly roman-catholic,
but orthodox and protestant are also
cooperating strictly with us..
Great success - this book is widely used in Poland.
SHARING OUR KNOWLEDGE WITH OTHERS
Translation into Russian language - this book has
been used in Russia and other places of the ex
Soviet Union – you are welcome to ask this ‘TZMO’
– SENI for it – they operate in most courtiers of
Eastern Europe! Latvian version soon…
This book is recently more and more useful in
Poland - to train informal - paid caregivers doing
home care as semi-legal emigrants - mostly from
Ukraine, Belarus and other East European
countries.
The editors’ intention is to present the history of
the establishment of palliative and hospice care
in Poland as broadly as possible: by identifying
its sources and inspirations, through the
personal experiences of people involved in end-
of-life care and the stories of particular palliative
and hospice centres and the organisations
supporting them.
In Solidarity. Hospice-palliative Care In Poland, E-book, 2015
www.academia.edu/27253218/In_Solidarity._Hospice-Palliative_Care_in_Poland
http://hospicefoundation.pl
Migration of Polish People to European Countries since 2004
The stock of the Polish population
in the UK in 2004–2013
PACE - Palliative Care for Older People
in care and nursing homes in Europe
6 EU COUNTRIES - The overall aim of the PACE project is to inform and
assist policy and decision-makers at national and European levels.
PACE will help to achieve the objectives of the European 2020 Strategy,
specifically the European Innovation Partnership on Active and Healthy
Ageing.
Ultimately, this will lead to optimizing the delivery of palliative care to the
large proportion of elderly EU citizens. RESULTS PUBLISHED IN 2019
www.eupace.eu
PACE - Palliative Care for Older People
in care and nursing homes in Europe
HPC vs. LTC – POLAND 2019
Data from the international PACE project shows that palliative care
knowledge among Polish and Italian nurses and care assistants
working in long-term care facilities is deficient and lowest among 6
European participating countries. (Smets et al., 2018).
There is also evidence that the integration of palliative care in long-
term care facilities in Poland and Italy is minimal if not non-existent,
especially compared with West European countries.
Researchers of LTC urge that national policies focusing on enhancing
palliative care development in long-term care facilities are particularly
needed in Poland and Italy to ensure optimal levels of care (Honinx et
al 2019).
www.eupace.eu
PACE - Palliative Care for Older People
in care and nursing homes in Europe
REACTIONS IN POLAND – NIK,2019
The recent audit showed that only 10% of HPC patients in Poland are dying
from diseases other than cancer, although Polish legislation has been adapted
to the requirements of the WHO, opening HPC for all people end of life.
The Polish Supreme Audit Office (NIK) ordered an amendment to the
regulations aimed at ensuring access to care for the needy, regardless of the
disease (NIK 2019). So far over 90% of patients in HPC are cancer only!
After the NIK audit the Minister of Health was ordered, among other issues, to
coordinate - in cooperation with the minister competent for social affairs - HPC
with primary health care and social services, especially with LTC centres.
A lack of coordination and integration of activities in the local environment -
especially the lack of cooperation with social assistance and other social
economy entities was mentioned in 2019 NIK rapport. It was mentioned as the
main problem of integration of end-of-life care much earlier (Krakowiak, 2012).
www.nik.gov.pl/aktualnosci/opieka-paliatywna-i-hospicyjna.html
PACE - Palliative Care for Older People
in care and nursing homes in Europe
REACTIONS IN POLAND – NIK, 2019
Not all people in need have access to appropriate end-of-life care - narrow list of
diseases - mainly cancer–for HPC care. All others are referred to Long Term Care (LTC)
Well-funded HPC, almost entirely for cancer patients, are totally different from the
situation of people at the end of their life suffering from diseases other than cancer.
The end-of-life care by LTC is poor both in institutions and in home care. It is confirmed
by PC specialist who state that in Poland general standards of PC are not adjusted to
long term care. Specialists form PC are by-law are excluded from LTC facilities (money).
HPC has been developed under the umbrella of oncology and consequently enjoys
much higher funding than any other kind of LTC. HPC in Poland is very well developed!
HPC is free of charge for families, with optional donations only, while LTC is expensive
for families of patient or complicated while connected to social service co-funding and
support. LTC levels: expensive-private/Church owned; underfunded-community owned
www.nik.gov.pl/aktualnosci/opieka-paliatywna-i-hospicyjna.html
BUILDING THE FUTURE OF PALLIATIVE CARE AND EOLC IN EUROPE www.eupca.eu
Po co wrazliwe społeczności?
I dalej wg Twojego schematu
Professor Allan Kellehear 50th Anniversary Professor (End of Life Care) BRADFORD
https://www.youtube.com/watch?v=mqYmTTY-3gs#action=share
https://charterforcompassion.org - VISION
We believe that a compassionate
world is a peaceful world.
We believe that a compassionate
world is possible when every man,
woman and child treats others as
they wish to be treated-with dignity,
equity and respect.
We believe that all human beings
are born with the capacity for
compassion, and that it must be
cultivated for human beings to
survive and thrive.
Join to make compassion a clear,
luminous and dynamic force in our
polarized world. Embrace the
compassion revolution.
Verjamemo, da je sočutni mir miren svet.
Verjamemo, da je sočutni svet mogoč, kadar
vsak moški, ženska in otrok ravnajo z
drugimi, kot želijo, da se z njimi ravna - z
dostojanstvom, pravičnostjo in
spoštovanjem.
Verjamemo, da se vsa človeka rodijo z
zmožnostjo sočutja in da jih je treba gojiti,
da bodo človeka preživela in uspevala.
Pridružite se, da bo sočutje jasna, svetlobna
in dinamična sila v našem polariziranem
svetu. Objemite revolucijo sočutja.
(Google translation into Slovenian)
Compassionate Comminities/Cities - public
health approach to PC and EOL care
In well-integrated EOL care in the West they go one step
further with Compassionate Communities/Cities approach
What is a ‘public health’ approach to palliative care?
Expanding our approach to health care to include the community as genuine
partners – not simply as targets of our service provision
FROM: direct services, clinical, face-to-face, bedside, acute care, or
institutional approaches
TO INCLUDE: communities and neighbourhoods, civic partnership
approaches, and the promotion of health and wellbeing
Welcome to Public Health Palliative Care International: http://phpci.info/
Why this CC business and development of public health approach to EOL care?
To enable end of life care to conform to current developments in the rest of the
health care system – palliative care as acute care & disaster management
To address the burden of morbidity and mortality associated with living with life-
limiting illness or loss, and the care of both (‘co-morbidities’)
The epidemiology of primary care (the 40% rule – the inseparability of health &
social care)
To re-engage the community whilst recognizing the limits to professional care
and service provision (Remembering the 95% rule)
To recognize the increasing limits to national budgets for direct services of all
kinds (100% and decreasing)
To remind ourselves and our community that end of life care – like all health care
– is in fact everyone’s responsibility
Welcome to Public Health Palliative Care International: http://phpci.info/
Compassionate City Charter - implemented in the UK by various communities
1.School policies or guidance documents for dying, death, loss and care
2.Workplace policies or guidance documents for dying, death, loss and care
3.Trade unions to work with employers for policies or guidance documents for
dying, death, loss and care
4.Our churches and temples have a dedicated group for end of life care support
5.Our city’s hospices and nursing homes have a community development
program
6.Our city’s major museums and art galleries hold annual exhibitions on the
experiences of ageing, dying, death, loss or care
7.Our city hosts an annual peacetime memorial parade (“March of Memories”)
8.Our city has an incentives scheme to celebrate and highlight the most creative
compassionate organization, event, and individual
9.The city will showcase its current achievements and services in ADDLC
10.The city will work with print and social media to organise annual short-story
or art competitions around the themes of ADDLC
11.We will focus on diversity in everything we do
12.We will not forget the vulnerable (ie homeless, prisoners, refugees, etc)
13.We will review after 2 years and add another sector every year (eg higher ed,
emergency services, sporting associations, etc)
http://phpci.info/become-compassionate-cities
CC - public health approach to palliative care (PC) and EOL care – how?
Expanding the responsibility for end of life care
•Going beyond an illness-bound view of end of life care – especially cancer
•Including older people
•Including both the well and the ill
•Including carers and the bereaved
•Including schools, workplaces, businesses, unions, places of worship, media,
and leisure sites and groups
Further Reading - for those interested:
A. Kellehear (1999) Health promoting palliative care. Oxford University Press.
A. Kellehear (2005) Compassionate cities: Public health and end of life care.
Routledge.
L. Sallnow, S. Kumar, & A. Kellehear (eds) (2012) International Perspectives on public
health and palliative care. Routledge.
K. Wegleitner, K. Heimerl & A. Kellehear (eds) (2016) Compassionate Communities:
Case studies from Britain and Europe. Routledge.
See also: Public Health Palliative Care International http://phpci.info/research
http://media.wix.com/ugd/14d74a_e5b7cd4e798541e5aa534192f48cd284.pdf -
Rumbold, B. (2011). Health promoting palliative care and dying in old age
Compassionate Cities: the progress so far #1
Frome, Somerset, UK (pop. 25,000) Committed
Ottawa, Canada (pop. 1,000,000) Committed
Londonderry (NI) UK (pop. 230,000) Committed
Inverclyde, (Scot) UK (pop. 82,000) Committed
Vic (pop.42,000), & Seville, Spain (pop. 750,000) Committed
Burlington, Toronto, Canada (pop. 175,000) Committed
New Westminster, Vancouver, Canada (70,000) Committed
Koshikode aka Calicut, India (pop. 400,000) Committed
Compassionate Community – Cologne, Germany
https://palliativzentrum.uk-koeln.de/forschung/letzte-lebenszeit/caring-
community-cologne-english/
Compassionate Community Cologne; 2019-2022 (German version available)
Hindering and supportive factors for setting up a participatory round table to
improve care and support in the last year of life Gerontological research on Well-
Beeing (GROW II)
Project Description: With increasing age, the probability increases that relatives,
friends and acquaintances die and that oneself goes through various mourning
processes. At the same time, the risk of dying also increases.
In this last phase of life, the "last year of life", competent health care is a
prerequisite for the best possible quality of life. But we spend only about 5% of
our lifetime in this phase accompanied by professional caregivers, 95% of our
time is spent in our social environment. Both aspects belong to a "compassionate
community" when it comes not only to optimizing care, but also to improving general
health competence in dealing with the issues of "dying, death and grief".
Methods: Participatory action research through interviews with stakeholders, practice
partners, focus groups, participant observation method. Practice partners are
companies, politicians, citizens' representatives, health care institutions and others.
Compassionate Community
“It is neither desirable nor cost effective to see death as the province of
clinical medicine. The new unit will implement the charter for A Good
Death, stress the need to ‘normalise’ death, build public health capacity
and aim to create a compassionate community approach to end of life.”
Joined effort of Hospice-Palliative Care and local communities can move
forward and help to develop Compassionate Communities in Poland - first
in Eastern Europe? There are acctivities in Gdańsk, Poland
Slovenia as part of Compassionate Communities? Welcome!
Contact: [email protected]
Fr. Dr Piotr Krakowiak, prof. UMK
UNIQUE HISTORY OF SOLIDARITY
IN HOSPICE-PALLIATIVE CARE.
TOWARDS COMPASSIONATE COMMUNITIES
IN POLAND AND EUROPE
National Chaplain
of Hospices
