Anda di halaman 1dari 51

ProHospiz

Mul cultural and prac cal oriented


Guideline for establishing pallia ve
care services

Title:ProHospiz.MulticulturalandPracticalOrientedGuidelineforStablishingPalliativeCare
Services
Coordinator:MaraPilarGarcadelaTorre.UniversityofACorua,Spain

Authors:

SimoneJennewein.DiakonieZentrumPirmasens,Germany
PavelGrabowski.OnkologischeHospizstiftungPodlaskie,Poland
RamnaDicu.SfntuGheorgheRumnien,Romania
KingaDnes.SfntuGheorgheRumnien,Romania
UlrikeBusch.DeutscheEv.KirchengemeindePorto,Portugal

ThisprojecthasbeenfundedwithsupportfromtheEuropeanCommission(Grant:20141DE02
KA204001583).Thispublicationreflectstheviewsonlyoftheauthors,andtheCommissioncannotbe
heldresponsibleforanyusewhichmaybemadeoftheinformationcontainedtherein.
TABLE OF CONTENTS

Preface ......2

Introduction .3

1. Forms of hospice services and their functionality ....................................................................... .4

Germany .................................................................................................................................4
Romania..................................................................................................................................8
Poland .................................................................................................................................. 10
Portugal ............................................................................................................................... 13

2. Staff management ...................................................................................................................... 17

Germany .............................................................................................................................. 17
Romania............................................................................................................................... 18
Poland .................................................................................................................................. 19
Portugal ............................................................................................................................... 20

3. Communication with stakeholders ............................................................................................. 23

Germany .............................................................................................................................. 23
Romania............................................................................................................................... 25
Poland .................................................................................................................................. 26

4. Death in cultural context ............................................................................................................ 31

Germany .............................................................................................................................. 31
Romania............................................................................................................................... 38
Poland .................................................................................................................................. 43
Portugal ............................................................................................................................... 46

1
PREFACE

We live in a time of profound changes and rapid developments. Value systems and social structures are
under closest scrutiny. An increasing individualization and pluralisation has brought not only a liberation
of the questionable social norms. It has made it difficult to find a common response to the challenge of
time. The question of "common sense" is harder to answer than ever. Not to mention, that in many
areas in Europe a lack of financing resources makes it harder to live together in the own country and
with other countries. The described changes are also reflected by the experience of suffering, illness,
dying, death and grief.

In this guideline, as a result of the "EU project - Pro Hospiz", in the field of hospice work, money is not
the issue. It is about considering the living conditions in five European countries and highlighting the
differences and rather the commonalities. This project deals with the exchange of experiences and
communication between the project partners. Only in this way Europe can move ahead.

Just in the last few decades life expectancy of people in many countries has grown significantly (e.g. as
much as 20 years in Germany). At the same time many people experience their last stage of life not at
home, death gets repressed. On this background, hospice work is gaining more and more importance
throughout Europe.

This guideline gives a very good overview of the different requirements and organization of hospice and
palliative work in five European countries. According to these descriptions, the guideline wants to
encourage and facilitate the hospice work in other cultures and contexts. It is also a first guidance for
practical implementation.

It is a document that shows that Europe can only develop through exchange and communication,
although this is sometimes a difficult road. Life to share until the last minute belongs to this road.

I thank all those who have followed this hard road in the last two years and worked with passion to
create this guideline.

Norbert Becker

Theological Board Member DiakonieZentrum Pirmasens

2
INTRODUCTION

In the ProHospiz Project, an Erasmus + Strategic Partnership, five different institutions from five
European countries have participated in the development of this practical and multicultural guide.

The partners of the Project brought their different experiences and backgrounds:

Institutions with a job based in palliative care through hospices as Diakonia Centrum in
Pirmasens (Germany), which has acted as coordinator of the project
Institutions with experiencor in hospitals, such as the Oncology Hospital Foundation of Podlas
(Poland)
Institutions providing home cares in rural environments such as Diakonia Foundation of the
Reformed Church of Transylvania (Romania)
Organizations interested in the implementation of care services in their own countries, as the
German Protestant Church in Porto (Portugal).

This is a practice-oriented guide, with a clear intercultural orientation and revised in its pedagogical
aspects by the University of A Corua, which has extensive experience in higher adult education and the
implementation of European projects.

This guide is the result of four transnational training activities and the consequent exchange of best
practices throughout the two years of the project.

The contents have been created for being used in the launch of new services, for improving the quality
of the services already rendered and the implementation of good practices adapted to the various
social, economic and cultural needs of each European country.

3
1. Forms of hospice services and their functionality

According to the WHO hospice and palliative care is an active, comprehensive and holistic care of
patients with incurable and progressive disease in the last section of their lives. The terminally ill person
and his/her relatives who take care of him/her are accompanied by professional care.

The goal of palliative care is to improve the quality of life of the patients and their families. Palliative
medicine includes relief of pain that is difficult to control and relief of other physical symptoms, as well
as relief of mental, spiritual and social suffering. Not to mention the support of the family in the course
of the disease and at the end of life.

The beginning of the development of the modern hospice leads back to the year 1967, as Cicely
Saunders founded the first hospice in London. In this first chapter we are going to show 4 different ways
in which palliative care and hospice are being developed in Germany, Romania, Poland and Portugal,
according to the different cultural and economic reality of their societies.

Germany

Legal framework and the conception of inpatient Hospice

The main issue of hospice work is the outpatient care at home, having the aim to allow dying people a
dignified and self-determined life to the end. Wishes and needs of the dying and their families are the
heart of hospice action. Besides the outpatient hospice care and support of the dying in nursing homes,
stationery hospices are also necessary to a limited extent. If a palliative care in the home environment is
not possible and a hospital treatment is not needed, stationary hospices for sufferers are an alternative.

Stationary hospice aims to offer care and accompaniment (palliative treatment and care), which
improves the life quality of the dying person, corresponds to his/her dignity and excludes active
euthanasia.

According to the German legislation, any insured person who requires hospital treatment is entitled to a
subvention of full stationary or partial inpatient care in hospices, in which palliative care is provided, if
an outpatient cant be done. According to the laws a framework agreement between the head
organizations of the health insurance companies and the Federal Hospice Association Hospiz
registered association at the federal level (from 13.03.1998 amended by 09.02.1999) has been
completed. Also, inpatient hospices are subject to the respective regional home care legislation.

Inpatient hospices are independent facilities that through independent health care mission - provide
palliative treatment for patients with incurable diseases in the last stage of life. These are small facilities
with a familiar character up to 12 persons, where the interior design of the institution is organized
according to the special needs of the seriously ill and dying people. Inpatient hospices have special

4
equipment, which ensures a palliative medical and nursing care, as well as social, mental and emotional
care. A significant proportion of the costs of the hospice must be covered by donations and various
voluntary commitments, besides a contribution from the insured person (in accordance with SGB XI). In
order to provide palliative patients the best possible care, hospices work in the framework of regional
networks together with resident doctors and hospitals.

The Hospice in Pirmasens, the Evangelical House with ecumenical orientation and nondenominational
openness bears the name of Magdalena House", as Maria Magdalena, Jesus disciple, who provided
support for Him and his disciples and who had a deep knowledge about life, death and what
resurrection may mean.

The word "hospice" comes from the Latin word "Hospitium" and means hospitality. In the middle ages,
"hospice" denoted a building where guests were hosted and accommodated. Apart from them there
were also sick persons accepted. That is why today at the hospice we are talking about guests and not
about patients. Dying people should find comfort, security, comprehensive care and support according
to their wishes and needs in their last phase of life. "To share life" is the objective of all activities in the
community care center, which means in the segment of hospice work specifically parts of life - until the
last minute".

Today, the term hospice is a comprehensive concept of medical, nursing, and spiritual care, a certain
attitude towards death and care for the dying. The seriousness of the disease will be treated, so that
those affected can live until their death as comfortable as possible.

Objectives of hospice work

To offer care and accompaniment with pain and symptom control


To create and maintain a high quality of life if possible
To offer our guests and their families individually adequate assistance and support by our
trained personnel in case of mental and spiritual pressure
To maintain intact the dignity of the individual
Active euthanasia is excluded

Structural premises

Due to its health care mission, inpatient hospices are structurally, organizationally and economically
independent facilities with separate staff and concept. So the hospice is not part of an inpatient care
facility and meets the following requirements: to have small facilities with a familiar character (between
8-12 beds) and is subject to the minimal residential home standards or the state legislation.

Other rooms are single with shower and WC, have a bath to relax and quiet places as a retreat
possibility. The hospice also have a lounge with kitchen/living room as a meeting place.

Basic instrumental equipment

To carry out care and treatment the following issues must be particularly provided:

5
Blood glucose meter, blood pressure monitor, test strips, oxygen unit with accessories, tools
against decubitus, feeding pumps, suction unit, inhalation and respiratory therapy device,
wedge, oropharyngeal airway, perfusor, refrigerator for medication storage, drugs cabinet,
nursing beds with bed side rail and raising aid, toilet aid, lifter, bed, bath tub, wheelchairs,
walking aid, infusion pumps, infusion stand, adaptation aid, bathing aid, communication aid,
nursing equipment, positioning aid, mobility aid, nursing aids for body care / hygiene.

Personnel requirements

Nursing service management /


representative nursing service
management
Certified nurse, in the course of
time palliative care training -
160 hrs
Certified geriatric nurse
Nursing assistant
Housekeeping - and functioning
staff
Volunteers
Resident contractual physicians for care of the guests

What do we offer?

Holistic and individual care (24 hours), as well as pain relief and symptom control
Support / care of the guests and
their relatives in case of
psychological, social and spiritual
stress
Support by volunteers
Pastoral support
Aromatherapy / aromatic care
Music therapy

Who can get into the hospice

People with advanced disease, in which a cure is excluded and there is a limited life expectancy
A hospital treatment is no longer required
An ambulatory care at home is insufficient or is not possible
Care in the nursing home is not sufficient or is omitted

These criteria must be confirmed by a medical certificate according to 39a, SGB V.

6
Usually, a palliative treatment in an inpatient hospice comes into question only by one of the following
clinical pictures:

Advanced cancer
Full symptoms of the AIDS
disease
Disease of the nervous
system with inexorably
progressive paralysis
Final state of chronic
kidney, heart, digestive
tract or pulmonary
disease.

Volunteers at the hospice

Volunteering is a public voluntary activity without a financial gain. Volunteers do it regularly for a certain
time within the framework of free carriers, projects, associations, initiatives or institutions.
"Volunteering" is also used together with terms such as "voluntary social work" or "civic engagement".
There are about 100 million volunteers in Europe.

The hospice "House Magdalena" works in cooperation with the "Outpatient hospice and palliative
counseling service Sdwestpfalz Zweibrcken" (AHPB Sdwestpfalz). In addition to the full-time active
staff, volunteers are an essential supporting pillar for our guests, their relatives and friends.

Tasks of the volunteers may be: regular visits, being there together with patients, talks about farewell,
grief, fear, doubt and hope, looking after the dying people if he/she desires, not letting those alone, who
are close to the dying person, offering the last supporting activity, for example small purchases, going to
the doctor or the pharmacy, accompanying family members and friends in their grief.

Volunteers are coached within a basic seminar and advanced seminar for the work in the inpatient
hospice and are accompanied by coordinators of the outpatient hospice and palliative counseling service
(AHPB).

7
Romania

Presentation of logistics

The Christian Foundation Diakonia, the assistance organization of the Transylvanian Reformed Church
District, is a non-profit organization based on the Christian concept of values. The main center is located
in Cluj-Napoca but there are still another 6 branch offices at different points of the Transylvanian region
of the country. A branch in Sfntu Gheorghe, Covasna county was founded in 2002 as well.

The branch in Sfntu Gheorghe has two specific sectors, namely the disabled service and geriatric care.

Our most determinant activity is home care service: we offer help for older, chronically ill, bedridden
and disabled persons, who need specialized nursing care. The sick or old people will be visited on the
basis of a family request at the beginning by our professionals and an analysis of the health and social
situation of the sick person will be carried out; after that a written contract (nursing plan and nursing
contract) will be completed and - depending on the requirements the person who needs care will get
professional care once or several times per week.

A brief geographical overview

Covasna county is located in the corner of the Transylvanian region, with the county capital Sfntu
Gheorghe. The country is divided into 41 counties and Covasna is one of the Hungarian-inhabited areas
of Romania. The county has a total surface of 3.710 km, furthermore it has 210 177 inhabitants. Our
service covers a total area of 108 km.

Workspace

We have contact to 18 communities within Covasna county, namely 3 towns, 15 communes (consisting
of 51 villages). 17 service cars are used in 54 localities. Most of our colleagues live in one of the villages
supplied by us.

On average we offer services to a number of 942 persons per month and 4620 persons are visited. A
nurse has 154 visits each month and 7 per day on average. Supply is provided by: 12 caregivers, 18
nurses, 2 social workers, 1 psychologist, 1 accountant, 1 project developers, 1 regional director. Covasna
county was divided into three regions. The office with the main coordination is in Sfntu Gheorghe, but
there are two more centres. This division makes it easier to cover the target area.

We have 3 team meetings every week, divided according to the regions. These take place on Tuesday in
Sfntu Gheorghe, on Wednesday in Covasna and on Thursday in Baraolt. Within this team meeting the
activities (report) of each nurse referring to the previous week are presented. Beside these weekly team
meetings we have a large meeting every month. The monthly meeting takes place at the main centre,
here comes the entire staff. All the materials needed for work are collected there and the new ones for
the next month ordered.

8
Areas of assistance interventions

Basic care: Washing, bathing, hair washing, diaper change, underwear change, clothes changing,
bed linen change, nails and hair cutting, shaving, feeding, nursing advice.

Health care: blood pressure measuring, blood sugar measuring, doing injections, wound care,
bandaging, catheter - urine bags changing, ear wash, mobilization (movement, massage), health
advice.

Social assistance: help in household activities, buying medication and monitoring of medicines,
transport of dirty clothes and linens to the laundry, washing, support in contact between patient
and doctor, tools rental, visits, guidance, providing information.

Challenges and difficulties

A challenge and at the same time a great difficulty is that houses are not supplied with water in the
villages. This means that drinking water is obtained from the fountain. Many people havent got any
bathroom in their houses. First of all the nurses need to chop wood in the morning and then make a fire
to be warm in the house and water can be heated. Only after this work one can start the care work.
Many of these people are alone and are visited only by the employees of the Diakonia.

9
Poland

In Poland hospice and palliative care began in 1976, when Mrs. Halina Bortnowska organized a group of
volunteers at the Church of "Ark of the Lord" in Nowa Huta (Krakow). Other important data were 1981 ,
when the Society of friends of the hospice patients in Krakow was established and 1984, when the first
hospice called Pallotinum in Gdask was founded.

The palliative care team for home supply was founded in 1987 in Poznan at the oncology department. In
1990 it was enlarged and a 7 beds department came into being. This was the first department of
palliative medicine with a training program for students in Europe. At that time there were about 450
institutions dealing with palliative care and hospice in Poland, most of them inpatient hospices, 7 of
them belonging to the Medical Universities.

Basic definitions and concepts

Palliative care in Poland is a specialized medical


care. Medical performance in palliative medicine
will be provided according to the needs of the ill
person and his/her family. Coordination and
nursing care is carried out by a multidisciplinary
team consisting of doctors, nurses,
physiotherapists, psychologists, pastors, a social
worker and volunteers, who are ready to provide
assistance for the dying patient.

Palliative medicine is a medical specialty in Poland since 1998. There are also specialized professional
trainings for nurses in this area.

Terminal period is the time when the treatment - with the aim of extending life - is over and the disease
inevitably results in death in the near future. The actual terminal period begins when symptoms occur at
patients, which lead to irreversible deterioration of the general condition and performance. This is the
actual time of palliative medicine and takes usually 6-8 weeks. Care at the end of life is provided for
patients at the end of their lives. The term palliative medicine is narrower than palliative care and
represents only one of the many elements of care in the last weeks and days of life. The goal of palliative
care is the improvement of life quality of the patient and his/her family in the last stage of the disease
and the concern for dignity at the end of life. These goals can be achieved by professional care of the
patient through pain relief, symptomatic treatment of physical complaints (such as breathing, digestion
problems, etc.) but also, health education of people in care, their family members and employees who
care for the sick is very important.

Long term care is the effort made for people who need help with the daily activities of their life and
need support because of the different serious disabilities. It is provided by personnel with different

10
qualifications. In Poland long-term care is separated from palliative care. Unlike palliative medicine, no
medical supply is necessary for long term care.

Indications for hospice and palliative care in Poland

Palliative treatment in advanced, incurable stage of the disease (usually a cancer) is a treatment for
symptom relief. Its goal is not to relieve patients from the underlying causes of the disease. These
include:

Palliative surgery (e.g, fistula formation, palliative bypass treatment, reduction of tumor mass,
removal of individual metastases), installation of stents, surgical treatment of pathological
fractures,
Palliative chemotherapy, palliative hormonal treatment with the objective of the extension of
life.
Palliative radiation therapy (e.g. destruction of tumor metastasis in certain places).

During this treatment patients can stay at home under the care of their relatives; at this stage they are
rather independent and require no professional help.

Patients with access to hospice

In order to admit patients in palliative care, determination of the causal treatment is necessary. This
happens through a referral by a physician. The written consent of the patient and / or his family is
necessary. Every doctor can assign a patient in the hospice.

Patients may be assigned stationary in the hospice by following disease:

Cancer
Central nervous system infections caused by slow
viruses
Diseases caused by HIV
Primary systemic misconducts of CNS
Cardiomyopathies in decline
Respiratory diseases - incurable at the end of life

Pressure ulcers and kidney failure - in


decline.

In Poland there are three possibilities to offer services


in the field of palliative medicine and hospice:

Inpatient hospices
Outpatient hospices and
Palliative medical clinic

11
In the inpatient hospice patients have 24 hours care available. Patients who cant be treated at home,
are qualified for care. Indications include symptoms that cannot be handled or would mean an
inefficient and inadequate care at home.

In the outpatient hospice the patient remains at home and the hospice team will come to him to fulfill
the duty of care. Patients and their families or caregivers are informed and trained about the planned
process of the treatment within the framework of care.

Hospices provide special equipment and teach the family how to use it. There is also the possibility of
establishing a telephone contact with the hospice staff. The staff can provide advice on the phone and if
necessary will visit the patient more frequently.

Palliative medical clinic provides care for patients whose health condition allows them the visits to a
doctor. They will receive there medical examination, recommendations, recipes for medicines,
instruction on other treatments and procedures. The palliative medical ambulance also provides support
for families of the patients and costs are included in the price of advice for the patient.

Financing of palliative medicine in Poland

Patients, mostly with cancer, bear no costs for medical care in the palliative medical facility. Grief
counseling is included in the cost of patient care through the hospices. Requirements for hospice care,
hospice equipment and employed staff are regulated by law.

What is financed by the health insurance fund:

24 hours availability for palliative care at home, 7 days a week (outpatient Hospice)
24 hours medical care in the inpatient units
Full protection for medicines (stationary Hospice)
Treatment of pain according to the WHO guidelines
Treatment of other symptoms
Care and prevention of complications
Rehabilitation according to the instructions of the hospice physician
Transfer for a specialist consultation and delivery of laboratory tests
Fulfillment of mental health needs and other procedures performed by a psychologist
Fulfillment of spiritual needs
Free rental of equipment for patient care and rehabilitation as well as medical devices (for
outpatient palliative care)
Health education and advice
It is acceptable the so-called short-term care stationary unit / department of palliative
medicine - accepting patients for a short time, so that the family can rest
Orphan care

12
Portugal

Legal framework and financing

The Hospice idea in the classical sense hasnt been included in the national health system in Portugal
until recently. Since 2004 the legislature ensures that the supply of patients at the end of their life must
be assured by skilled palliative medical care. However, palliative medical care in Portugal has the
character of hospital care.

The Portuguese health system is based, as in the other European countries, on the requirements and
standards of the WHO. The implementation of standards is however dependent on the government
budget and the institutions, being very limited since 2008.

Therefore, a qualified support of hospice services by private and/or religious institutions would be useful
and desirable, especially since the state services cannot ensure 24 hours care. Initiatives aimed at the
establishment of hospice services in Portugal should take into consideration the fact that the term
"hospice" appears to be a negative term and its use in the language is equated with poverty.

Typology of services in palliative care

The national program for palliative care (PNCP) emphasises that the complexity of care at the end of life
is a multidisciplinary discipline that requires an interaction between patients, their family members,
professional nursing staff, volunteers and society.

Palliative care in Portugal in the year 2015 is being offered stationary in specialized hospitals, stationary
hospitals, outpatient day clinics and as a home health care.

Inpatient care. The Law provides that all public hospitals with more than 200 beds must have an
intra-hospital nursing team for palliative care (Equipa Intrahospitalar de Suporte em Cuidados
Palliativos, EIHSCP). This concerns also the facilities of the network of the national long term
care (RNCC I). The care teams interact selectively in the hospitals, because there are no pure
palliative stations. There are pure palliative care units (Unidades of Cuidados Palliativos) in
oncological hospitals, some university hospitals and some private hospitals. It is left to them to
be integrated in the national network of RNCCI. Some specialty hospitals have taken out their
beds from the network due to the increased own needs, like the palliative care unit of the IPO in
Porto (Unidade dos Cuidados Palliativos do Instituto Portuguesa de Oncolgia), which needs the
existing 40 beds in its own palliative medical department.

Outpatient care. It is provided by the Equipas intrahospitalares (EIHSCP) for their own patients,
as well as by the care team (Equipas de Cuidados Continuados integrados ECCI or Equipas
Comunitrias de Suporte em Cuidados Palliativos ECSCP) in the health centres (Agrupamentos

13
Centro Sade and Unidades), if there is a palliative-care team. It is required that the patient is
mobile enough to visit the clinic or health center.

Home care. It is provided by the EIHSCP as well as the ECCI, among others. However, the main
pillar of care consists of family members, friends and neighbors, as well as the church and
private nursing services.

A good knowledge of the structures of local health system is required for the establishment of a hospice
service. Good relations with the local medical facilities should be established, as well as a personal
contact with the medical staff. In Portugal, palliative care is fulfilled in the 20 districts on the Mainland
and in the autonomous regions of Madeira and Aores (status 2015). International references stipulated
in 2006 a health care team for each hospital with more than 250 beds and a care team per 140,000 to
200,000 residents. Because of the reduction of beds in public hospitals for long-term care, there is an
increase in the number of beds in private hospitals.

The current reality shows that there are still "white spots" in the national supply. It shows that
differences exist both in urban and rural regions. The situation in the health sector is only close to the
formulations of the PNCP due to the economic situation of the country and is still far from a nationwide
treatment in palliative care. The establishment of supporting hospice services appears sensible and
necessary.

Patients with access to palliative care

The national program of palliative care stipulates which patients gain access to palliative care:

Patients with limited life expectancy


Patients with intense pain disorders
Patients with severe diseases which require a specific and interdisciplinary organized care

The most common diseases in palliative care are the oncological diseases, HIV, rapidly progressive organ
failure, some neurological and cardiovascular diseases. For admission to palliative care is not only the
medical diagnosis decisive, but it will also be taken into consideration the complexity of the situation,
the individual needs of the patient and the impact in terms of family. The palliative care orientates itself
not only to the patient, but also integrates the members of the family during the care and stimulates the
grieving stage. The national plan of palliative care (PNCP) stimulates the increase of public recognition
and appreciation of palliative care as individual contribution with social importance through family
members and private organizations.

Classification and assignment of a patient. The classification of patients is carried out by the
attending physician at the health center or hospital if the need is recognized from a professional
perspective. If the particular hospital has a stationary care team and free beds, the care is supplied
locally. If the situation of the patient should allow a domestic care of the patient, it is preferable to the
stationary care.

14
If the supply of the patient from the hospital can be guaranteed, an assignment is done by the ARS in an
appropriate health care facility of the national care network that has free beds at the time.

The regional distribution of palliative care services and equipment makes it clear that, if a patient is
classified as palliative, he/she will depend on the allocation of the ARS and the selected health care
facility is not often situated in the immediate vicinity of the residence place of the patient or the family
members.

Partner organization - German Protestant Parish in Porto

German Evangelical Christians are historically found in Northern Portugal since the 18th century. They
were mainly merchants from northern Germany, as well as from the evangelical diaspora in other parts
of the country. They settled in and around Porto, used their native traditions and their Lutheran faith. In
1901 Pastor Martin Richter, who worked as a priest for the workers in the glassworks of Amadora, was
called to Porto. His first official duty was the foundation of a church community headquartered in Porto.
In 2001 the German Evangelical congregation of Porto moved its seat to Canidelo, a district of Vila Nova
de Gaia, on the southern shore of the Douro river. Since its foundation the German Evangelical Church
of Porto offers regular worship services, liturgies and pastoral care in German language.

The parish founded in 1901 the German school in Porto as well, being in partnership to this day. The
parish considers the task of its Lutheran reformed tradition to support the training of people. Until 2011
the parish could perform its social duties in a limited way only in smaller, short-term projects. Since
November 2011 the German Evangelical congregation in Porto is a recognized religious community and
therefore has obtained the premise for establishing an IPSS (Instituies Particulares de Solidariedade
Social, Diario da Republica I n 50-1-3-1988, no 138/88do 1 do Maro). This status may be applied by
private associations, foundations and church-based organizations, enabling them to launch recognized
social projects with and without government support.

Due to the large financial cutbacks, including the social and medical area of the country since 2008, the
German Evangelical Church in Porto has been dealing with the idea of establishing an outpatient hospice
service.

Project location - Vila Nova de Gaia

Vila Nova de Gaia is the country's second largest city after Lisbon with over 300,000 inhabitants. The
population density in the 24 communities is variable, ranging from 396 to 5126 inhabitants per km.
Health care for the people in the district of Vila Nova de Gaia is similarly structured as in the rest of the
country, secured by public and private hospitals, public health centers and private, established
physicians. All facilities and approvals are subordinated to the Ministry of Health (Ministrio da Sade).
In the year 2015 each community in the district of Vila Nova de Gaia had at least a health centre. 2 state
and a private hospital are responsible for the town and the surrounding area. Although the number of
medical personnel in the public health centres takes into consideration the number of population of
individual communities, it still doesnt have the proper care quality as hospitals. The attractiveness of an

15
employment in hospitals compared with the health centers in the urban and even rural areas
corresponds to the European trends.

In order to establish an outpatient hospice service, a thorough location analysis with regard to
population statistics, supply conditions and needs is necessary and useful. A good knowledge of public
administrative structures is a premise, especially in case of government integration of the planned
project or when applying for financing. Information about the establishment of associations or
foundations is available to the public. Advice and support by notaries and accountants are required.

As a conclusion of the current situation of palliative care in Portugal, the establishment of supporting
palliative care services through private and/or church-based organizations is useful and necessary. The
initiative should always find direct collaboration modalities with the existing palliative medical facilities
and physicians. Recognition by the ARS allows and facilitates effective cooperation for the benefit of the
patient.

16
2. Staff management

Germany

Staff and qualification profiles in the inpatient Hospice House Magdalena

Nursing service management: Registered nurse with minimum 3 years of experience,


completion of a palliative care training and completion of a 460 hours training as a management
function
Registered nurse with palliative care training
Certified geriatric nurse
Nursing assistant
Housekeeping - and functional staff
Volunteers

Pastoral care at the Hospice House Magdalena

We work with a Protestant pastor and a Catholic priest. They come to visit our guests and their family
regularly once a week. If necessary, they also come when guests want it or if a last benediction after
death is desired. They are also involved in the memorial and prayer services.

Offers of support in an important phase of life according to the very different expectations and
opinions of the guests and their family members:

Willingness to talk with an open ear and listening heart


Truthfulness according to the situation
Connection to good memories
Concerns about difficult life experiences

17
Ways to reconciliation and forgiveness
Invitation to conversation with God
Possibility of common prayer or even of singing a familiar religious song, if possible together
with the members of family
Invitation to personal prayer, blessing of the sick
Sacramental signs offering
Communion for the sick
Anointing of the sick if possible privately, with members of the family
Opportunity to the sacrament of penance and confessions
Last benediction and memorial service for the deceased
Occasional request to take over the funeral
Special church services with ecumenical cooperation
Memorial service on the Saturday before the last Sunday of the church year
Prayers at Christmas and Easter

Romania

Training for medical nurses and caregivers

Medical nurses. Romania has two options in the training of nurses. First possibility is the
postgraduate school (after the 12th grade), the second possibility is to study in a college. There is no
difference between the diplomas regarding the name and the competences, but their salary is different.

Each of the two training systems includes a proportion of 70% theory and 30 % practice. Every nurse
needs an authorization to be able to work. This means that each nurse must join the Order of Nurses
Midwives and Medical Assistants in Romania (OAMGMR) after graduation. Nurses must pay each month
1% of their remuneration for membership tax. And there is a professional training obligation, one must
accumulate 30 points per year. Only then she/he can continue working. Their authorization must be
renewed annually. The nursing training doesnt give every competence. One can make a further
professional training. It takes 3 months to get each special discipline.

Nurses have competence for:

Professional care of patients, taking into consideration the individual needs and current life
situation
Knowledge of the latest nursing care theory and medical findings
Implementation of medical orders professionally
Giving adequate information to family members and patients
Informing, advising and training caregivers

18
Complete, correct and comprehensible documentation
Implementation of legal and organizational frameworks
Including of economic and ecological requirements
Knowledge of health care and financing system
Measuring physiological parameters
First aid

Caregivers. Education and training in nursing can be fulfilled only by accredited organisations. For
example, private educational institutions, or Red Cross. This training lasts 6 months. One must have
attended the tenth grade if he would like to participate at the training. The training includes 360 hours
of lessons, that means approx. 200 teaching hours theory, and 160 hours practical training.

There are education and training services for nurses and nursing attendants at the Diakonia. An
accredited training is organized for every nurse twice a year for four years. The number of participants is
always limited. The OAMGMR determines how many points one must gather. Our foundation has other
training programs as well, but they are only applied to our employees, for example the palliative
education or exchange of experiences with other Diakonia branches.

Poland

Outpatient Hospice for adults

Staff requirements

Specialist in palliative care or physician in the course of specialization in palliative


medicine or a doctor with a completed course in palliative medicine - 1 for 30 patients.
Nurses - with a specialization or training in palliative medicine - nursing - 25 % work time
or 1 place for 15 patients.
Other staff: a clinical psychologist or with a master's degree in psychology, place for
15 patients, physical therapist - place for 15 patients.

Requirements for the rooms and other. Office room with telephone, answering machine and
fax, room for the provision of medicines, bandages and medical devices, mobile phones for staff.

Conditions for visits. According to the requirements of the national health fund, a hospice
physician provides services for patients at least twice a month, a nurse at least 2 times per week and the
other team members depending on the needs of the patient.

19
Devices requirements. Oxygen concentrator (or another source of oxygen), electric aspirator,
inhaler, glucometers, blood pressure monitor, ECG device, first aid kit, crutches, canes, walking frames,
wheelchairs, infusion pumps - at least 1 piece for 10 patients, nursing case.

Ambulance - palliative medicine.

Staff requirements

Specialist in palliative care or physician in the course of specialization in palliative medicine


or a doctor with a completed training in palliative medicine.
Nurses - with a specialization or training in palliative medicine or in the course of the
specialization.
Other staff: a clinical psychologist or with a master's degree in psychology.

Other forms of support for the terminally ill and dying, as well as for their carers:

Homes for incurable sick people supported by religious orders.


Private houses (mostly for chronically ill, bedridden patients, family doctor)
Hospices organized and led by foundations, without the support of the health insurance fund.

Portugal

Staff requirement and quality in palliative care in Portugal are specified by PNCP (Preliminary Nursing
Care Plan).

Palliative care units (Unidades de Cuidados Palliativos)

Trained palliative healthcare professionals, ensuring a 24 h care


Registered nursing attendants for a 24-hour care
Nursing staff for a 24-hour care
Clinical psychologists, who provide a daily care of the patient and his family
Physiotherapists who guarantee the daily therapy schedule
Social assistant if needed
Pastoral care
Own leadership-, administrative- and technical coordination services

Care teams in hospitals (EIHSCP) - Equipas intra-hospitalares de suporte em cuidados paliativos


trained palliative physicians
registered nurses in palliative medical care
Clinical psychiatric and psychological support
Physiotherapy support

20
Pastoral support
Support by a social assistant
Own management and coordination service

Community nursing service

A trained palliative doctor


Registered nurses in palliative medical care
Psychiatric and psychological support
Physiotherapy support
Pastoral support
Support by a social Assistant
Own leadership and management service

Except for the nursing facilities (Unidades) the remaining elements cant offer a 24 h service. In addition,
there is a high rate of emigration of highly qualified medical professionals since 2013, meaning that
there is a staff shortage nationwide in hospitals and nursing homes.

The PNCP doesnt regulate the usage of volunteers, whose value is not properly appreciated. A large
number of volunteers in action are in care facilities and hospitals throughout the country. Being highly
committed and tightly organized, they carry out an invaluable service for the benefit of patients and to
support the medical care personnel shortages.

An outpatient "hospice service" by private or religious institutions should have at least the first two
components of personnel. It is also advisable for an outpatient hospice service to have a part-time use
of psychologists and social assistants at its own disposal. If the pastoral component can be offered in
addition, that is a plus. This requires a good ecumenical collaboration with the local parishes.

The hospice service should provide a 24 hours service in any case. This leads to increased personnel
expenses and a greater financial burden. An outpatient hospice service is dependent on extensive
support through volunteers as well.

For a high-quality palliative care service access to the appropriate drugs and opiates is fundamental.
These are important for symptom control in the palliative care of patients. An outpatient "hospice
service" offered by private or religious institutions must have a corresponding state recognition and
qualified medical personnel in order to have access to drugs which are necessary in palliative medical
care. Access to drugs is regulated by law (Despacho n. 10280/2008, de 11 de Maro) and requires the
proof of an appropriate education and training of medical personnel and health care workers.

Quality control and continuous training

Doctors and nurses in the state institutions are subject to monitorization and periodic external
assessments. Participation at the regular training courses, both in theoretical as well as practical areas of
palliative care, is a duty. Since a good palliative care system cannot be guaranteed without the close

21
cooperation with the family members of the patient as well as with the actions of volunteers, the PNCP
also provides education and training for them.

An outpatient "hospice service" offered by private or religious institutions must have the corresponding
state recognition, otherwise the medical care personnel cant participate at the training events
organized by the government or institutions.

22
3. Communication with stakeholders

Germany

Fundraising

There are no cots for guests at the Hospice Magdalena. We take over the application for health and
nursing care insurance. The quality of our work is strongly reliant upon donators and volunteers. All
questions, measures, etc. concerning the topics of donations, fundraising, partnerships, sponsorship etc.
are centrally controlled and managed by the section of marketing or fundraising. In the Magdalena
House internet page there is the possibility to "Support our work" through donations or supporting our
facilities.

Ways to donate

Sponsorship
Occasional donation
Donations for joyful occasions
Donations in the bereavement
Volunteering (active)
Company
Donations service

Sponsorship. We have the program Life share be a


Godfather. Since we unfortunately cant cover all
services of our hospice House Magdalena by health and
nursing care insurance and own funds, we need help
from others.

5% of the current costs of the hospice must be covered


through donations on the basis of a nationwide scheme.
Therefore we are searching for citizens to take over a
sponsorship for the inpatient hospice House Magdalena
in form of an annual donation of 90 EURO (7.50 / month).

These donations are, of course, tax deductible. The sponsorship can be finished at any time.

Occasional donations. Those who give something to others, show something important: they dont
only donate money, but help people in need and give a sign of humanity at the same time.

23
Donations on joyful occasions. As the birthday, a
wedding, the birth of a child, the anniversary of a
company, bereavement, etc .

Other options for support:

Charity events
Advent lunch at the hospice
Fundraising bike ride
Community lectures about the hospice
Setting up donation boxes

The non-profit association 'Hospice House


Magdalena e.V.' supports the hospice financially
and morally.

All donators whose address is known by us


receive from us a thank you letter with a
certificate of donation, which is tax deductible at
the tax office.

How can I find donators and attract them?

We can find new donors through


fundraising events organized as a
facility or through the Foundation
House Magdalena. New donors
come to us through word of mouth
propaganda or just because of the
fact that the Diakonia centre has
great confidence in the region. You
can attract donators if you
communicate continuously with
them, if you appreciate them and their support for the organization and if you also let them
know this.

The media presence helps to attract new donors as well. But the active maintenance of
networks or making new contacts can lead us find new donors.

Other stakeholders

The ultimate goal of the hospice is to give more quality of life to the terminally ill and dying guests. This
is achieved only through the collaboration of various professional groups, such as doctors, pain
therapists, pharmacies, hospitals, palliative stations, social workers, outpatient hospice services,
volunteers, pastors. In this sense, it is important:

24
Mutual recognition and appreciation
Open exchange of views
Respectful dealings with each other
Confidence base
renunciation of hierarchic structures if possible

Working with doctors. In case of renewed registration the further medical care will be discussed
with the guests and their relatives.

Care is supplied mostly by our palliative healthcare professionals. They are accessible 24 h
for problems, questions, pain crises, etc.
Visits take place daily.
In case of renewed registration, physicians will receive a copy of the medical letter of
transfer.
The first medical interview takes place mostly a few hours after the registration.

Moving into the hospice is possible if there are sufficient capacities. An early discussion with the hospice
as a possible form of care is useful in order to be able to make the right decision in case of need. An
existing need for hospice is a precondition for moving in. The attending physician certifies the existence
of needs for a hospice. Thus, he is the first contact person in case of need, but also the social services of
the hospitals, the outpatient hospice, palliative consultation service etc.

Communication with the health insurance company and other stake holders. The hospice fills in
the application for hospice costs at the health and nursing care insurance companies and it classifies
through the medical service of the health insurance companies.

Communication with other stakeholders such as nursing homes, social services of the hospitals,
palliative centers, ambulatory care services, etc. is a management task of the nursing service
management and its delegate in order to maintain communication with outsiders and with the
stakeholders. From time to time, appointments are made with various stakeholders to discuss things
together and to maintain the flow of communication.

At the annual strategy meetings of the Diakonia Centre we plan how should we have an external effect
and interact, thus achieving a positive image.

Romania

Communication with local communities

The Romanian social system is very defective and undeveloped. There is no centralized, uniform,
country-specific and instructed system, which can handle persons in need of care using the proper care

25
service. So the family must organize nursing at home or join a home care service. Either there is such a
local service or you must register at a retirement home, but there is a waiting list first.

Since 2004 we have developed a home care service and tried to implement it in collaboration with the
political community beyond Sfntu Gheorghe.

We have a partnership agreement with every Mayor's Office and have worked together with them. At
present we have a partnership agreement with 18 local communities.

Tasks of the local community

Local communities assure us


the possibility of a local office
in every village.
Contribute with at least 50 %
of the current expenses of the
service.
Good cooperation and
collaboration with each other

Tasks of the Diakonia

To deliver the home care


service monthly
Company cars must be insured
The remaining 50 % of the current costs must be covered by Diakonia.
Coordinating and tracking (monitoring) and accounting

Poland

Communication with sponsors and donators

In Poland there are several ways for funding the activities of health care facilities established by NGOs.
These include for example:

Grants and subsidies from the national and local government


Funds from foreign organizations, which offer scholarships
EU funds and donations from individual donators, who can be contacted through the payment
for individual persons.
Other activities to raise funds: public collections, charity gambling activities, money boxes
(collection box in a public place), etc.

26
Cooperation with enterprises - donations, sponsorship, bartering, payroll (donate a small
portion of the remuneration for statutory (charitable) purpose of NGOs).

Raising funds from sponsors and donors -institutions, organizations, economic companies, stores and
individual donors-, requires communication skills and the art of interconnectedness skill and continuous
maintenance of relationships and communication. They must be aware of the fact that the benefits of
the relationship between donors (transmitter) - receiver refer to both parties.

Definitions

A donation is one of the sources for financing the


activities of NGOs. Donor transmits any material
goods, for example, money, items, real estate free
of charge for the organization. For the donation
the donor receives nothing in return - the
transmission does not result in any direct material
benefit for the transmitter. The subsidy wont be
returned, it is considered as financial support
received by the organization from the donors or
sponsors for any purpose in accordance to their
statute. The subsidy is usually awarded for the
implementation of specific activities, such as the nursing expenses of a patient in a month. It can also be
used by the organization, e.g. for training of personnel. Donors can be the national or local government,
a commune (communal offices, voivodeship marshal, etc.). They outsource the execution of public tasks
with public funds. To obtain a grant, the organization writes a proposal (draft) for the implementation of
an action. In order to get a grant, you must sometimes write a letter of intent.

Sponsorship is one of the most common forms of promotion. The essence of sponsorship is to link a
positive image of the funded organization with the sponsor. Sponsor logo, advertising for its products,
accompanied by sponsored events or activities. Sponsoring is rarely an anonymous action, although it
sometimes happens in the activities of NGOs.

Sponsorship is often understood as a form of charity. However, for most sponsors, it is an additional
form of promotion. It is the action of marketing in order to promote a business, a product or a service
and it is beneficial for both parties.

The sponsor is the person or institution that finances totally or partly any action, often in exchange for
advertising his own business. The sponsor can be a company but also a person.

Fundraising is scheduled to collect effective money which will serve the common welfare. Money that
will be donated to charity, will go entirely to the receiver. Fundraising means not only "asking for
donations" - it is an issue in the area of organization and financial management. Such a fundraising
requires planning, methodology measures and compliance with the rules of ethics. Some fundraising
activities, such as setting up of a solid base of donors, require many years of hard work and investment

27
costs, which arise in the initial phase of the project. Only a few fundraising methods allow a quick profit
with minimal investment.

Who do you ask for support and how can you get it?

Stakeholders involved in discussions concerning


sponsorship, donations and other support activities of the
NGO are: Companies (enterprises), individual charity
organizations, national government and local government.

We get from sponsors and donors, among other things:

Financing
Real estate donation
Donations in form of services provided by the
sponsor.
Financing of professional training of the staff (so -
knowledge)
Event funding and support
Volunteers

How to find a sponsor and donor?

There are different ways to attract donors. Direct marketing, through which we can create a solid base
of donors and sponsors. Direct conversation is a way of raising funds directly from persons. Employees,
friends, supporters, family members, can be a possible support for the organization. Besides meeting
individuals it is important to plan and to act on a larger scale. In order to understand better the activities
of the organization, you must advertise with brochures, business cards, publications and materials to
illustrate the situation.

Presentations at conferences and meetings, organization of courses, training, promotions, cultural or


sport events ,are an opportunity to present the activities of the foundation and to find allies.

Use of mass media, informing the media about the activities of the organization, the creation of a
positive image and being present in local and national newspapers, radio and television.

Maintaining and updating the website and social networks, as well as the use of other options on the
internet (including online campaigns).

How to speak with a sponsor?

In a first stage, and most often, we turn to the companies and institutions from the immediate
surroundings for fundraising. Helpful contacts are our friends or those who are already involved in the
action. Media should be informed about the undertaken projects just through articles in newspapers,
reports in the news, on the radio or television, thus increasing the number of people willing to donate.

28
Over time it becomes clear that for most companies, to collaborate with an organization which works
for the common good is considered very cost-efficient. Their logos in the report are visible for a wider
group of potential customers. The enterprise recognized as a sponsor promotes the image of the
company as a supporting and socially responsible company.

How can I keep the sponsor?

In order to gain the sponsor it is important to


foster a long-term and stable relationship. One
should thank every sponsor for his/her help
and let him/her know, in which way money or
other things will be used. A person can't
handle this alone in case of a large number of
sponsors. For efficient operation we need
other persons to carry out the same work for
the organization. Listen carefully in order to
understand the purposes of your potential
donors - why, how and under what
circumstances he/she is willing to support the
organization.

Rules and regulations in Poland

Principles of public collections in Poland are legally regulated since 1933. Currently, the principles of
public collections or a collection of donations in the form of cash or other goods for charity are
regulated by law from the year 2014. Some fundraising activities require special permits from state
authorities or the local government.

All economic activities of NGOs are subject to a reporting obligation, including fundraising activities.
Foundations are required to create an annual report and make it accessible for their supervisors and the
public, for example by publishing it on the webpage. Certain types of donations require a signature of a
notarial deed, for example in case of a real estate donation. Without this agreement the donation will
be null and void, even if it has been already handed over. When transferring money from the donor who
wants to benefit of tax deduction, a proof of the bank transfer is enough to bring.

Ethical aspects

The code of ethics of fundraising was adopted in 2006 during the IV International Fundraising Summit in
the Netherlands. The document regulates the ethical standards, such as acquiring the money for charity.
It emphasizes the use of funds in accordance with the will of donors, transparency, integrity, legal
compliance and reporting obligations. It is recommended to inform the provider about the costs of the
campaign.

29
As a conclusion, although the
main objective of a business
organization is to be profitable
as opposed to the main objective
for NGOs, that is to promote the
common good, cooperation is a
chance to increase not only the
material benefits, but also to
improve the image of the
business. Access to material
resources of the company is
important (such as: money,
equipment, experts). Learning a
well developed organizational
culture of the company and a
good knowledge of the
management system enables a more efficient implementation of projects and social programs in which
NGOs are involved. Advantage of the business side is the image construction of a socially responsible
company involved in charitable actions among other things - the use of knowledge of nonprofit
organizations for voluntary participation in social projects as well as knowledge of writing and managing
social project plans. Business representatives and heads of NGOs are being in other realities such as
organizational reality and have different objectives. Their encounter and cooperation is a clear
explanation to the fact that they identify basic values and principles and for these values and principles
they are ready together to change and improve their closer and further habitat.

30
4. Death in cultural context

Germany

Dying from a Christian perspective

Each death has its own history: people who have death before their eyes as well as family members and
the living environment are affected by the mercilessness of the end of life. The hospice guests are
accepted as persons in respect for their dignity, regardless of their religion and belief. Truthfulness
characterizes the coexistence with the terminally ill and dying people as well as with the affected
families.

Common questions of bereavement for the dying person as well as questions for the persons left behind
have to do with their biography, what was my life?, with practical topics settling the last things and
making ethical decisions and always concerning deep spiritual questions: Where did my life come from?,
where are we going?, what remains of it and what may I hope?

Hospice pastoral care doesnt aim to evangelize people in the last phase, but rather to recognize
sensitively their needs and to seek together appropriate answers and offers. Pastoral care can lead to
the valuable treasure of prayer, sacraments and blessings, which can make clear Gods loving closeness.

Hospice pastoral care is reflected: in conversation, in support, in prayer, in church service, in the
celebration of the sacraments.

Pastoral support and care can also mean:

To have time, to be there, to be


resistant
To help people come closer to
those things that move their soul
To encourage them to feel the
sensations and make questions
concerning the last time of their life
To help them to get into the
process of dying with their own life
conclusion
To identify the Christian hope for a
life beyond death

31
Symbols of farewell

Farewell rituals

We give the family members and ourselves time to say goodbye from the deceased.
In order to say goodbye, we have a farewell ritual, through which we give the deceased the last
honor and say goodbye to him/her.
Until the deceased will be picked up, he will stay in the room until he is picked up by the funeral
undertaker. During this time a candle burns in the hallway.
The names of the deceased are written down in a memorial book.
Thus, we try to preserve a place in our memory of the people and their names.
At the end of the year we invite the family members to a memorial ceremony for the deceased.

Ethical guideline

Dealing with life support measures to incurable and dying people at the Hospice House Magdalena.

"Care has moral implications," writes Benedicta Arndt. The nurse, religion teacher, care scientist and
catholic nun considers nursing as a moral act. According to her, every action is morally loaded. Easy
activities such as food offering, body care etc. should not be underestimated. They reflect values that
are important to us. How much more does this apply to life maintaining measures that must be taken by
incurable and dying people - or doesnt. Arndt says: "To be concerned about others, to do a good deed
for others is a moral act" (Lay, 1991, Ethik in der Pflege, p. 184. Schlutersch). But defining the term
"good" is complex because in many cases it is very difficult to say what's good for clients. Basically we
assume today that only the concerned persons can decide what is good for them. It is necessary to
respect his/her autonomy. But this principles got problems as well. Do we all know what is good for us
at any time? Anyway, we are on the various fields of the Diakonia centre Pirmasens, not only in the field
of care and education. Generally speaking, goals of our actions are life sharing. We should agree again
about what that means. In the areas in which we orientate ourselves as Christians on the person of Jesus
Christ, "the" Christian view of man is not there. Therefore there is a need to discuss the way to this goal
over and over again. None of the ethical guidelines can expect final answers.

On the situation

Concerning the question how we should deal life maintaining measures of incurable people, we meet
very different positions, ways of thinking and religious beliefs among people who seek our help and
among employees, physicians and doctors. Thereby it always leads to ethical conflicts that force all
those affected to make hard decisions, which burden the already difficult situation of monitoring and
caring of terminally ill persons. Such different conflict situations occur especially when it comes to the
issue of life or suffering extension through "artificial feeding" or hydration (subcutaneous; PEG-tube). To
prevent such conflict situations, we consider ourselves responsible to create a guideline for dealing with
incurable and dying people as a guidance. For a better understanding we pay attention to problem
situations.

32
Description of the problem

The meaning of the term "dignified death" is subject to the cultural and social change and changes in
historical perspective. We know that the medical development is putting nowadays the responsibility for
things - that used to be considered as God-given and therefore accepted by people - in the hands of
people themselves. Nowadays "dignified death" is often equated with a short and pain-free death
phase.

There is often a clear divergence between desire and reality: it is not the quick and sudden, but the slow
death, announced by disease that comes generally. Concerning end-of-life care there are serious lacks of
information, which we want to counteract.

Our belief is that every life given by God is unique and we respect every person who needs help with all
his needs and values. The Christian work in the Diakonia centre is of primary importance. Therefore we
are trying to accept, to promote the acceptance of end-of-life care by advertising our Christian
principles, in order to make clear with the society these Christian values and the dignity of the people.
Our goal is to ensure a form of accompaniment and support - serving the people concerned and
corresponding to our principles - on the last section of their life cycle. If a person takes the help of one
of our facilities, we assume the responsibility as a carrier and as an employee to care for him/her and to
accompany him/her as good as we can. Therefore, we see ourselves as carriers without questioning

the right of affected people to self-determination and


ultimate medical responsibility

when it comes to the topics of life-maintaining treatment and care to the end-of-life. We emphasize that
each person involved in the end-of-life care is involved in all decisions.

The ethical guidance conceptualized and compiled within a work group, should help raising awareness
of issues in our work and setting framework values, in which we act according to our guidance and
policies and at the same time providing assistance to decision making processes. In this way it is clear to
the affected people themselves and their families, as well as other professionals involved, how do we
want to deal with ethical situations. There are no solutions for different individual situations provided.
To find an adequate solution for individuals in their special situation is the common responsibility of all
people involved. They should meet the will of the people affected as much as possible.

We have formed a work group in the hospice, which has the function of an ethics council, gathering to
make individual and situational decisions.

Guidelines of our action in the Diakonia centre

In our decisions and actions we are guided by the following aspects:

Dying is part of life dying is so individual and unique as individual and unique is the life of a
person.

33
The will of the people concerned is decisive for our work; if he/she cant express himself/herself
any longer, the Patient Decree, his/her authorized representative or ultimately his/her
presumed wish will be decisive.
In our decision-making process we will focus on the people affected, together with his/her
approach to life and his will.
An active death help is always excluded, even if the affected person wishes so. Exclusively for
the relief of symptoms it might be considered to accelerate the process of dying the dosage of
drugs.
In the situation in which a person faces death and a cure is no longer possible, we use all
possibilities of palliative care.
If we are unsure of the decision, the following principle counts for us: In case of any doubt we
choose life.
In case of a decision making by a representative, we make the process together with the
representative as clear as possible.
When we make a decision we involve family members, friends of the person affected, doctors,
nursing staff, pastors and other people, who may contribute to a decision.
According to Christian belief, dying is a part of life. It is a transition. This allows trust and serenity
even in remission and mourning.

The situation on the border between life and death. Assessing whether a person is already in a
current dying process is difficult. However, the assessment of this situation must be made every time.

The accompanying persons (nurses, doctors, family members and so on) are finding themselves on the
border of an ethical conflict:

How strong is our own emotional need or even our unreflected routine as caregivers, as doctors,
to disallow death?
Do we give up just because cure is no longer possible and because of this life doesnt seem to
make sense for us any longer?

Self-critical reflection of own emotions and attitudes belongs to a professional action.

The will of the people affected. We have already mentioned our guiding principle dealing with
incurable people. We stress again that the will or the presumed will of the affected people must be
taken into account under all circumstances and that the action is focused on the will. In case of the
persons incapable of giving their consent, life-maintaining measures in our view may be cancelled or not
ordered only if the dying process of the person is irreversibly established, or the patient decree defines
it clearly. We disagree with the opinion that dementia is already an indication that a person is in the
dying process. Our belief and experience speak clearly against this opinion. The same applies if the wish
for death appears in connection with mental illnesses (e.g. depression, delusions).

Under the term of will we understand the ability to set goals and to pursue the achievement of this
objective.

34
The will of the patient is that statement, when the patient capable of giving his/her consent is fully
enlightened about the medical facts of the case and the necessary treatment and he/she expresses
his/her will to do so. If he/she not is able to do so, the legal supervisor has to express to the doctor and
the caregiver the presumed will or that included in the patient decree of his/her protg in accordance
with 1901 BGB. The examination whether the patient decree is applicable to the current situation is
the responsibility of the representative or supervisor. If there is no patient decree or the present patient
decree is not applicable on the current situation, the presumed will of the patient on the basis of
concrete evidence is decisive. These are written or oral statements, ethical or religious beliefs and other
personal values that must be considered. If this is not possible, the best way to make decisions for the
good of the patient in accordance with palliative medical principles is the consensus of all the people
involved.

If the supervisors and doctors dont have the same opinion in the process of decision making, the court
of guardianship must be appealed. The home operator doesnt have the competence to examine the
doctors instructions, who has followed the above described road in order to make a decision.

Education. We would like to inform and support comprehensively and sensitively people who
we look after and accompany in their last stage of life, through the involvement of family members and
accompanying persons about the possibilities of end-of-life care and pain medicine and thus about the
possibilities of a dignified death.

We are convinced that the fear of unbearable suffering as well as the fear of dying can be reduced.

Making decisions. "Human dignity is inviolable. To respect and protect it shall be the duty
of all state authority "(art. 1, paragraph 1 of the Basic Law for the Federal Republic of Germany).

When we think about the end of life, there are many discussions and disputes about the dignity of the
human person, and this in particular in the context of the current discussion on prohibition of the
organized and commercial forms of assisted suicide. We are responsible to fulfill the wishes of persons
affected if possible and to exclude at the same time each approach to an active euthanasia.

Dignity and the autonomy of people, self-determination at the end of life, these are the issues of our
attitude. We experience this with mindfulness, empathy and enduring of uncertainty.

First and foremost, we always focus on the affected person with his/her personal situation. Even if he is
no longer capable of making decisions, those involved in the process of their representative decision-
making must specify this expressly. We are fully aware that all participants bring their own personality,
their history, their concern into every human relationship. This is the reason why everyone should try to
understand each other patiently and sensitively in order to maintain the dignity of the people affected.

This ethical principles set out the framework in which we move in our decision-making processes. In
conflict situations these guidelines should be a help, ethically responsible and, if possible, by consensus
in order to make the necessary decisions.

35
Basic care

In case of old and seriously ill people who suffer from an incurable disease, the following measures
should be taken:

Individual body care


Pain and symptom control
Spiritual accompaniment

These activities should serve the well-being of the seriously ill and elderly and help prevent additional
suffering. The affected person should not feel disturbed or bothered under no circumstances by the
measures taken. Doctors and nurses should do everything possible that these people can die in decent
conditions. In case of the seriously ill one should focus on the relief of suffering in a way that an
unavoidable life shortening resulting from it must be accepted.

Euthanasia - between prohibition and legalization

Euthanasia is the term for active assistance to die.

Acceleration or bringing forward a death process at the request of the affected person
Refers to simplification of dying or inducing death, for example in case of incurable diseases due
to medications (pain relief).

Euthanasia is illegal in Germany.

Different forms of euthanasia:

Passive euthanasia. Renunciation at life-maintaining measures at the moment of death (allowed


in Austria, Holland).

Indirect euthanasia. The dying receives legally allowed pain-relieving measures, even if this
reduces the death process. it is legally allowed.

Direct euthanasia. Direct objective: Killing of people on demand it is strictly forbidden in


Germany.

What speaks for and what against euthanasia?

Pro arguments: People have the possibility to die in dignity because they dont want to be
connected helpless to machines any longer and dont want to suffer from pains any more. If the
dying is still able, he can determine his/her death time himself/herself. Another aspect: keeping
alive a dying person is financially very complicated and expensive, a burden on the health
system of the Federal Republic; the lethal injection is the cheapest way to induce death but
since it is forbidden in Germany, it remains only a hypotheses.

36
Contra arguments: Everyone has the right to life and physical integrity. The freedom of a person
shall be inviolable. In the legal sense an intervention may be provided only on the basis of a law.
This law establishes that nobody has the right to define others lives, every life is worth living
and is unique. In 1 art. 1 paragraph 1 of the German Basic Law: human dignity is inviolable.
To respect and protect it shall be the duty of all state authority."

Alternatives to active euthanasia

Active end-of-life care in a


hospice - people still can
experience some beautiful
moments, complete uncompleted
tasks in peace, reconcile with
estranged persons and say
goodbye in peace.

In hospices there arent taken any


life-prolonging measures, the
focus is here on the symptom-
relieving therapy.

Patient decree

A patient decree is the written definition of a mature person capable of a given consent in case of
his/her incapacity of a given consent, concerning the question whether he/she agrees on examinations
regarding his/her general health, on medical treatments or medical interventions at a certain time - at
the time of the definition not necessarily imminent - or whether she prohibits them according to
1901a BGB.

Decision in case of doubts:

If the caregiver and the doctor dont agree on the will of the patient, an assessment must be
made by the court.
If the order isnt relevant to the current situation, the caregiver can determine the supposed
will.

Health care proxy. A health care proxy is granted as a precaution for the case when the mandatory
is not capable any more of managing of his/her own affairs. A power of attorney is issued during the
time when the mandatory is still capable of making decisions. A power of attorney may be granted to
anyone mature and with legal capacity.

Basically a power of attorney mustnt be certified, but a confirmation by a third party is useful e.g. by a
doctor, who can confirm that the mandatory has signed personally and was fully competent. A doctor is
the most suitable person to judge this.

37
Romania

Rituals and customs

In her book entitled Together with the deceased (2005, Egytt az eltvozottal), the author Polcz Alaine
writes as follows:

According to ethnographers, as far as the culture of a people is differential and developed as much
elaborated is the notion of death. Rituals play a crucial role in it. The rite is a collective behavior program
for the turning points of life - birth, marriage, death - and as part of this, for handling the loss and the
crises. The goal of the death rituals is the flexible coping with loss of the living ones: the removal of the
body from among the living ones, at the same time taking care of the body and care of the soul - and
concern for the grieving bereaved.

The idea of death in the 20th century has changed rapidly and significantly (the small communities -
which have maintained the traditions - cease to exist slowly, thus the rituals and the patterns of
behavior offered by the traditions and rituals - disappear and get lost.)

In the past, people were cured in their home, they were born at home and died at home. Even today in
the villages grieving relatives are helped through these rituals by their religion, society, family and
community, in which they are living. There were and still are mourning flags, funeral masses, funeral
dresses, funeral music, deep mourning (meaning: you may wear only black clothes) or partial mourning
(you may wear grey and white dresses). Children and parents were mourned for one year, distant
relatives for six months or six weeks. In the villages the neighbors also wore the sign of mourning for
one or two days.

All residents attend the funeral if possible (in the villages) and wear certain symbols of mourning on
their clothes (women wear a scarf of sorrow, men wear black hats) and they are dressed in black. The
grieving person is surrounded by family, relatives and friends.

Religion can offer much help, such as for example the care of the body. The funeral ritual, the cemetery
cult, the requiem mass, the memory bell, the prayers, the psalms, all of these help the mourner.

These social customs begins during childhood. Little children were brought to the dying as well, -
although less common nowadays, we want to protect children and with the other family members
they had the opportunity for farewell. Among the Catholics the priest is called in this case to give the
sacrament of the anointing of the sick for the patient, if the patient has not previously asked it.

The farewell from the body of the deceased, the caress, the kiss, the embrace and after that the closure
of the eyes, tying up the jaw, washing and the festive dressing of the body followed after the time of
death. Older people have provided and prepared the clothing (underwear, clothing) - in which they
wanted to be buried in advance. In the villages women have washed, ironed and had in reserve every
year of their life the burial shroud. Until they got married, they have embroidered the nuptial sheets,
later as wives the burial shroud and the men told them in which clothes they should be buried: mostly in

38
their beautiful Sunday best. Older people held the coffin in the attic. (Polcz, 2005) According to the rite,
the tasks around the dying and dead help people to get through the crisis, keep away the possibility of a
shock and help avoid and solve the shock.

Preparation of the house of mourning, preparations for the funeral and the funeral service.

Covering the mirror. Cessation of the deceased of seeing his/her own body. - In accordance with
the ritual death itself is a reflection for the survivors about what the deceased has done with
his/her life.... What do we do with our own lives?

Stopping the clocks. The earth time has stopped for the deceased. At the same time, another
time begins for us - without the deceased. According to the rite, the emphasis on the time of
death shows that we have arrived to a point which becomes a dividing line in our lives and our
relationship to it.

Lying in state. This happens at home in our villages, morgues in the villages started to appear
only in the last 5-10 years. The embalming of the dead body is obligatory according to the law,
only then can take place the lying in state. In the Catholic regions, where the morgues were built
by means of state subventions, the funerals from peoples homes are no longer allowed.

Candle light, prayer, psalm singing

Wake. Mourning is the possibility for living and recognizing the pain. Catholics invite the Rosary
association to organize and lead the process of the wake. This consists of the following: after the
lying in state prayers are said near the coffin at 12 oclock at noon until the funeral, in the
evening they come together again at the coffin and pray for the deceased. This means generally
2 noons and 2 evenings.

Funeral. Takes place on the 3rd day. According to the reformed tradition, the flag is carried
forward, it is then followed by the brass band, followed by the priest and the men carrying the
body, they are followed by the family members, relatives, and the women.

The main cross is leading the way at the Catholics, followed by the two burial flags with the
triple cross. They are followed by group of the wreath carriers (if the deceased is a woman, then
the wreaths are carried by women when it is a man, the wreaths are carried by men). If the
deceased is a woman, then the altar-boys are lead by two white flags, they are then followed by
the priest and the Cantor, then comes the coffin, carried by six people and with six people
holding 6 candles next to it - these candles were burning near the coffin during the lying in state,
followed by the distant relatives and the remaining group of women.

The funeral ceremony consists of 3 parts: the first part of the burial ceremony religious service
- the second part of the burial ceremony and the funeral.

39
Funeral banquet. People dont cook in the mourning house. Neighbors bring food and close
friends cook for the ceremony after. When coming out of the cemetery after the funeral, every
person is offered milk-loaf and caraway brandy.

These days were led by a series of rites, which strengthened the emotional force and at the
same time constantly intensified the feeling, that the deceased is still with the survivors and the
others are also next to him/her in order to help him. The fact that someone passed away, can be
relived also during the ceremony (Polcz, 2005)

The rites help the confrontation with death, deepening of empathy, living the farewell through
deeds, words, movements. They serve in particular to experience and express the pain.

We have also been influenced by the modern world: the death culture will change more and
more. The local cultures, customs and rituals are overshadowed and the customs including
global marks are spreading. Most rituals disappear, another part is in change. In big cities people
dont always wear black
during the mourning
period, black clothing of
teenagers being very
fashionable at the same
time. We consider it right
and fine, if someone
endures loss heroically,
shows no signs of sorrow,
doesnt talk about it, turns
back to work one or two
days later returns and acts
as if nothing happened
(Polcz, 2005). People of
nowadays dont know any longer what to do with a dying person, how to help a dying, how to
solve the problem of a suffering person or how to behave in the mourning period.

Most people die in hospitals - hospital domination in an isolated room or intensive care unit, among
devices and cables, disconnected, in total solitude. After the autopsy, the body is dressed by strangers,
then it is transported to the morgue. The number of bureaucratic tasks has been increased, therefore
we hire different funeral enterprises, mostly private companies which take care of everything. The only
task of the family members is to order the funeral. The company arranges all the obligations concerning
the funeral, the mourner puts away the obituary and thanks for the sympathy and aid of the
acquaintances in a daily newspaper. The relationship between human beings and institutions begins to
reign slowly over the relationship between person and person.

40
We still live in a happy time. The regions protect the traditions and if we really desire, we can do
something to transmit the traditions to the next generations. At the same time we can hear the silence
that surrounds death. The relationship between doctor-patient is transforming.

The group of family members

After the development of our foundation, we have noticed that there is a demand for the family
members - who care for the sick - for a small group, in which they could talk about their difficulties,
doubt, and tiredness. Thus, from the beginning we established the group of family members. There we
have tried to offer not only spiritual, but also physical help - through the various techniques or ideas
recommended by the assistants.

Slowly, these groups began to attract widows and mourners and among them were fewer and fewer
persons involved in the care of dying. Those who took care of their family members had less and less
time for the meeting. After a while we decided to turn these groups into bereavement counseling
groups, since there was much more demand for it, even by outsiders.

The group - as the modern method of bereavement counseling

Grief is the response to loss. The strongest emotional period of our lives is present when we lose
someone who is important to us. At the same time, it is one of the most important periods. Alaine Polcz,
the leading representative of the Hungarian thanatology writes that if we do not grieve after the loss
and do not complete the mourning process, the loss will affect then not only our way of life and our
fate, but also the fate of several generations. According to the author the modern society cannot handle
the experience of death and the preparations for the dying. Society removes and obscures the problem
and lies even the dying. The reason for this is obvious, that the tension - that has no solution is
suffocated and not only the patient defends himself/herself with this mechanism, but the family and the
doctor as well".

There have always existed rituals concerning the mourning, the release of the deceased and processing
of death. These meant a grisp for relatives, offered security, made the inevitable end and the
subsequent processing of grief easier. In the small rural communities everybody was involved in the
ritual process, showing the mourner, that he/she is not alone in his/her grief and that they share his/her
pain. These days people avoid the mourner - thus, the mourner is left alone with his/her loss people
dont dare to ask the mourner how he/she feels, because they fear that they would cause pain and if the
mourner begins to cry, they blame themselves for this. Often banalities are said. For example: life goes
on! Of course, for those who are not mourning. Life never goes on as before for those who have lost
someone. After a loss we have to learn to live with the loss and that does not mean that we would only
suffer.

Time heals all wounds - Yes..., grief is a psychological process but time alone doesnt solve everything.
Time can solve something only when the inner struggle, the work begins as well. In this case, the
mourning process. The proper mourning process helps to experience and express our pain, to process

41
things that happened and to return to everyday life. It is important to talk about the pain but we need
someone who really listens and offers not only superficial consolation.

Our groups consist of 6-8 people and are led by bereavement group leaders (social workers,
psychiatrists, psychologists, pastors, etc.). It is focused in particular on talks about emotions and on the
mutual support. Experiences show that a strong confidence among the members of the group has
formed. Within the group therapies tasks are done, which help them processing the loss of the beloved
ones; they write for example a letter to the deceased. Transcendent issues are also discussed, but there
are discussions about anger, feelings of guilt, because all these feelings are part of grief. The suppression
of emotions can lead later to physical and mental problems but the bereavement groups can help to
prevent and overcome these.

The survivor often doesnt only suffer but also loses his/her power, he/she feels almost paralyzed,
his/her confidence in himself/herself is reduced, that's why there are self reinforcing tasks within the
bereavement therapies. We try to bring out memories from the members, for example an extremely
difficult situation in the past, as they still managed to solve their problems. The mood in such cases
varies significantly, everyone praises them and the mourners are filled with joyful emotions. Grief is very
individual and therefore the processing of pain is also individual. However, it is important to overcome
the pain and to release the memory of the deceased, without forgetting him/her. Mourning also means
retention, not only remission. In order to reconcile ourselves to the death of a family member, we
should also review the things left behind from the person of the deceased. An important task of the
mourner is to change his/her habits and to reorganize his/her life.

The bereavement groups in our town gather every two weeks, the duration of the therapy is one and a
half hours, not more than 2 hours. It's a closed group therapy, consisting of 10-12 sessions that have
been previously planned. These sessions usually include the following topics, which can change to a
certain degree:

Getting acquainted, creation


of trust
Self improvement
Review on mourning
Mourning
Grief processing
Creation of a future image
Objectives, building the
future
End of group therapy:
reviews, gift, saying goodbye

42
Poland

Selected dilemmas at the end of life: Teaching of young people on the issues of death and suffering at
the end of life.

A society in which we are born, in which we live and die claims itself the role of the educator but it can't
be, although the society transmits legal sanctions, the basic principles of ethics and ethical ideas as a
heritage for the future generations. The educator, the master of people can be only another person with
ethical values.

Ethical values have their roots, their origin only in humans. Where the communities have a strong
influence on the individual and as individuals on the community, it comes to a decline, to a fall, since the
magnitude - of which everything depends - suffers inevitably, meaning the spiritual and moral value of
the unit. The dehumanization and demoralization of society is getting on. (...)- wrote Albert Schweitzer
in 1926. Today we observe such phenomena in the European culture. Not to miss it, is critical in the last
stage of human life as well.

A few generations ago all stages of human life: birth, adolescence, adulthood, aging and dying were
experienced within the family.

Suffering, dying and death were mystique, a mystery experienced by a collective group of people
friends and family were accompanied by a sacred. Death and dying was a secret, all family members -
including children - were affected by them. Today death and dying have received their social role. It is
estimated that more than 60% of people die in hospitals and this proportion is about 90% in the big
cities.

Well, on the one hand, in the media, art, computer games for children and young people more and
more images of death and suffering appear. Death is realistically portrayed in movie-news regarding
accidents, disasters, execution or graphically perfect computer games. People are afraid of death and
the dead, but dying affects though. Dying is the final stage of human life. We often limit ourselves only
to drugs and devices. Ancient rituals, traditions associated with dying and death since decades are
partially rejected, while others are shortened. Rituals are heavily dominated by the past and dont have
the same role for the grieving family as they used to have. The economic pressure and the dissemination
of technologies for the supply of a dying person favors dehumanization of this concern and turns this
concern into a number of more or less cost-efficient medical procedures. In order to be brought to
account, this whole system needs a series of completed formalities. The medical staff focuses on
individual diseases, their treatment and handling and reporting requires more and more time.

Death is often seen as a failure, as the defeat, not only by the dying and his/her family, but also by the
nursing staff. This creates unrealistic expectations and with that claims and complaints.

The phenomenon of secularization (life without God) is also significant. It kills the possibility of eternal
life. Christians believe that human life, once started, never ends. The answer to questions about the

43
meaning of suffering without God and the hope of immortality needs to be different in this case.
Understanding of the end of life, as the definitive end of humans - this causes very different attitudes
towards death and what happens after death by patients at the end of their life and their family
members. Some scatter the ashes, so that nothing remains after death. Other freeze or plastinate
bodies or make a diamond out of the ashes of their beloved ones.

Conversation about death and dying

How do we talk in this complex reality with our children and young people about the suffering, dying
and death? Are such conversations really necessary, communities often reject these problems and dont
see a necessity to make this moving matter a subject of discussion and to speak with young people
about it.

We need to recognize that suffering, incurable disease and death have effects on sick people. The
disease affects the family as well. Roles can change within the family. The family is the wealthiest and
the most advanced civilization. Children learn inevitably by imitation.

We cant run away from the issues concerning suffering, dying and death. The attitude of the parents is
significant. When children grow up, they are often faced with the problem of disease and disability at
their parents.

Our own experience shows that it is appropriate to inform children and to bring this topic closer to
young people. Lessons and classes should be carried out by people who know what they want to
communicate. They should have the competence, to communicate tactfully, with great sensitivity and
appropriate to the age of the trainees. In the process of learning children acquire new personal and
social knowledge and experiences.

Are there other methods of education or only the implementation of the lesson? As hospice workers, we
have the knowledge and medical experience, but we are not teachers or educators. That is why the
cooperation with schools and educators is important.

Methods for education of children and young people:

Events and charity events.It is a possibility and an opportunity to communicate and transmit
children and young people of all ages the basic idea of hospice and respect for life. For example
donations, charity bike rides or the celebration of the international day of hospice or the day of
the sick together with children serve this purpose. Children learn about support and assistance
of the weak, old and sick through games and imitation.

We dont offer lectures and presentations to children in the first year of primary school, only an
encounter with the hospice workers in form of a game, as described above.

Volunteering for schoolgirls and schoolboys.Volunteering as a teaching / educational activity is


closely linked to the previous point. Children and young people are not only recipients of the

44
events and occasions but they are involved and active within the organization. They support
activities promoting the idea of hospice - respect for life until its natural end.

Workshop methods. This type of work with young people requires a rearrangement of the
classroom or conference room in the hospice and the active participation of all persons
involved. In most cases we make a circle and we discover together what an incurable disease is
or means. Such meetings are not suitable for young children. Experiences such as illness or
death of the grandmother, grandfather are told and exchanged within the group of young
people. It is a good way to discuss with young people about ethical dilemmas at the end of life.
A flipchart, markers, paper, projector, etc. are useful devices, depending on the needs and
creativity of teachers.

Teaching in the classroom. Schoolchildren are methodically taught by teachers according to pre-
determined guidelines. In order to determine the goals of formation and education, the work
methods, the teaching materials and the necessary teaching time must be established. The
hospice staff is usually not invited to deliver a lesson. The lesson should be short. We
recommend that in addition to the short part of the lecture, a discussion should be held on one
or more cases.

Texts of culture. This term means literary texts, films, music, artists works. We use them in the
classroom for young people, but we should pay attention of the fact that these have a much
broader effect.

The goal of our activities with children and young people is.

Change and attitude for older people, suffering and the end of life, a change of mentality,
breaking taboos.
Learning how to talk about this topic, respect and understanding for the situation.
We should recognize that the obstacles are difficult for older people at the end of their life.
Discrepancy must be overcome without anyone getting hurt.

45
Communication and transfer of knowledge concerning palliative care and hospice work, about
the role of hospices and about the ethical dilemmas of modern palliative medicine.

Teaching and education are a long process. We don't expect immediate results for this difficult task.

Albert Schweitzer wrote in the introduction: The educator, the master of people can be only another
person with ethical values.

For children and young people parents are the first and foremost teachers. A separate issue is the social
responsibility of teachers, educators and cultural workers and their impact on the attitude of children
and young people. As we read in St. Paul: All things are lawful, but not all things are helpful. All things
are lawful, but not all things build up. (1 Cor. 10, 23).

The hospice team members should be part of such system for shaping the attitude of young people.

Portugal

The cultural context of death

The funeral rites in Portugal at the end of the 19th century and the beginning of the 20th century are
based on very old and different cultural influences, which had a strict protocol in the depiction of pain of
the grieving family towards the society.

In his doctoral thesis "Esttica do morte" (Aesthetics of death), Antnio Delgado comes to the
conclusion that the Portuguese are still mourning after their past respectively the golden era and
antiquated behavior patterns are followed in recent death rituals.

For his doctoral thesis at the University of the Basque region, Delgado investigated since 1996 the two
oldest public cemeteries of Lisboa, Alto de S. Joao and Prazeres.

He refers to the public display of the coffin with floral decorations in the funeral vehicles equipped with
glass side walls. According to Delgado, the construction of funeral homes - which has always been
connected with big financial efforts is also based on old traditions.

We still find relics from the time of the Islamic occupation in the cult of the dead in Portugal, as a
Western European country. In rural areas the widow mourns in her deceased husbands family house.
She goes through her grief as a kind of punishment.

Even today women are those who go to the cemeteries, clean and decorate the graves of their loved
ones on feast and memorial days. For women the cemetery is not only a place of intimacy for mourning,
but in rural areas the tomb serves often as a place of exhibitionism.

46
In the Portuguese folk traditions grief was deeply experienced and controlled by society.

Black was the color of mourning, both for men, women and children. People denied themselves any joy
and the grief touched the family members deeply.

Women hid their faces under scarves and shawls. The clothes allowed no accentuation of female
silhouette and women often went barefoot. The grieving woman was invisible to the society. If a woman
didnt follow this ritual, she was marginalized by the village community.

In case of the parents death, the mourning lasted from 18 months to 2 years, in case of the
brother/sister it was 1 year, 8 months by grandparents and 3 months by uncles and aunts.

Weddings and celebrations were postponed, even the slaughtering was suspended.

Death was indicated by the ringing of the bell of sadness in the rural communities and the news about
the person who passed away in the community spread from mouth to mouth.

The deceased was laid out at home. All the decorative elements were removed from the house. Even
the watches were taken to the neighbours, so that the sound of the clock cannot be heard. The furniture
was removed from the house and the neighbourhood borrowed chairs.

In some villages water was poured out of the storage jars and the sausages were removed from the
smoke.

The body was dressed in the best clothes which have already been acquired partly during the lifetime of
the deceased (dead suit) and remained lying on the bed. On the following day, the body was wrapped in
a blanket and placed in the coffin. This was carried to the cemetery on foot.

They put a glass or a bowl with a tiny twig next to the bed and they sprinkled the dead with it.

The deceased was mourned with loud complaints by female members of the family. Wealthy families
were able to afford so-called professional mourners "Carpideiras", demonstrating through their
lamentations, that the deceased was a beloved and honorable person.

If a child died, it was put in a white coffin. A deceased girl was dressed as a bride and adorned with a
bridal wreath. Older children then carried the coffin to the cemetery. After the funeral the

47
neighborhood cooked and served the grieving family and helped the family during the entire mourning
period.

One week after the funeral everybody attended the seventh day mass, which is deeply rooted in the
Catholic tradition.

Nowadays most of the mourning rituals and traditions are lost. The deceased must be buried within 48
hours. Since most people die in hospitals, there are professionals in the hospital who prepare the dead
body and hand it over to the undertaker.

At the request of the family the deceased can be laid out in a chapel, so that the family members and
friends can say goodbye. The coffin is taken into the church. There, it can be re-opened at the request of
the family. After the mass the coffin will be taken to the cemetery and can be opened once again to say
goodbye. The coffin key is handed over to the closest family member. The closing of the tomb is carried
out mechanically.

Since the acquisition of burial sites is very expensive, people tend more and more to cremation in
Portugal. The coffin with the dead body is brought to one of the few cemeteries, which carry out
cremations. After a few days one gets the urn with the ashes. There is no legal framework for the
problem of keeping the urn/ashes.

Generally speaking, the family takes little time for farewell and the grief overlies the pressure of daily
routine for a very short time, even if people fulfill the church tradition and attend the mass of the
seventh day.

The Department "Servio de Humanisao" of the University Hospital S. Joo in Porto makes real efforts
to support patients psychologically in the final stage of life and to help family members in the mourning
period.

A catalogue has been assembled in 2012, in which professionals in the hospital were informed about the
behavioral measures in different life situations to be observed, taking into account the religious rules
and ethnic traditions of patients and thus providing the necessary respect but also facilitating the work
of specialists.

48