Edited by the ECL’s European network on
patients' and health professionals’ rights and duties
Athens, 16th October 2004
Preliminary considerations
A diagnosis of cancer profoundly changes the life of the patient
and their family. It has a deep impact on human life, suffering and
societal perception of the patient both during and after treatment.
Cancer can be a chronic disease with associated special issues
and needs.
Therefore the Association of European Cancer Leagues
recognises that it is necessary to provide legal guarantees and
specific services for patients and their families.
In June 2002, the Association of European Cancer Leagues
adopted a Joint Declaration on the Promotion and the
Enforcement of Cancer Patients’ Rights: a document designed to
achieve recognition of patients’ and health professionals’ rights
and duties at both national and international levels.
ECL believes that the implementation of the joint declaration could
be promoted by a list of practical recommendations in selected,
specific issues in health, but particularly in the field of cancer care.
In order to facilitate its implementation, the Association of
European Cancer Leagues (ECL) has agreed upon the following
European Guidelines, which should be adopted and implemented
by the European Member States in respect of human rights.
Requirements for early detection, diagnosis
and treatment
Requirements for early detection, diagnosis and treatment must
be promoted to improve health and life expectancy, to minimise
the insecurity and suffering of patients and to avoid wasting
resources. All cancer patients, irrespective of age, gender or any
other social conditions, have the right to the best possible early
detection, diagnosis and treatment wherever they may live
Relevant components are:
- agreed quality standards, considering the existing European
- qualified and multidisciplinary teams
- quality and availability of patient communication and
- the right to have honest and sensitive answers to questions
- latest technical equipment and technology
- clinical guidelines
- quality assurance
- continuity and co-ordination between different departments
and sectors
- the right to a second opinion
- minimum waiting lists
- access to clinical trials wherever possible
- support for making informed choices
2. Quality of care
The quality of care must be the result of a comprehensive
approach to respond to the particular needs of the patients and
their families.
Quality of care must be promoted to improve the lives of patients
and families, and to lead to a more efficient use of resources.
Relevant components are:
- patients should have the right to participate directly in making
decisions about their care
- availability of a wide range of services ( hospital at home,
community-based services)
- co-ordinated medical, social and psychological services
- support for families
- increased resources at local level available for patients and
- supportive and palliative care including pain management
- support for integrating complementary therapies alongside
conventional treatment
- access to a multi-professional team
- access to specialist cancer services
- integration of voluntary and charitable cancer organisations
- right to privacy and to be treated with dignity
3. Relationships between patients and health
The relationships must be developed in mutual respect and
These relationships should be defined in terms of rights connected
to duties and responsibilities.
Relevant components are:
- protected time for consultation and communication
- right to the best quality of care
- right of free choice
- right to have full information about diagnosis, treatment, care
and prognosis, and the right to choose not to be informed..
- right to get information in appropriate media
- right to give or withhold consent
- right to have access to personal medical file
- right to privacy
- right to have complaints listened to and responded to
- right to involve family members if desired.
4. Informed patient
Access to information for patients and their family must be
promoted in order to ensure the greatest understanding, reducing
anxiety and distress and enhancing coping. Information may be
available from health professionals, from other external sources
(Internet, magazines, television, etc) and from cancer
Relevant components are:
- discussion and communication
- available directories (hospitals, hospices, services)
- code of standards and guidelines on providing reliable and
evidence-based information
- the role of the associations as a source of information
5. Psychological support for patients and their
Psychological support is essential to meet the range of emotional
needs as patients and families adjust to diagnosis, treatment and
post-treatment phases.
Emotional support is also important
Relevant components are:
- access to psychological support at each stage of the disease
- adequate training in psychological support and
communication for health providers
- availability of psychologists in all cancer care settings
- role of cancer associations both in hospitals and the
- support groups
- internet technologies to develop networking opportunities for
support and for patients to exchange experiences with former
- former patients can provide informal support for those newly
- access to a telephone helpline
- importance of self-help and support groups
6. Social and financial support
7. Rehabilitation
Social and financial support must be promoted to avoid the
additional financial and social burden for the patient and family.
Carers’ needs are also important
Relevant components are:
- advice on the availability of financial help
- help through knowledge of statutory benefits and in making
- support is needed throughout the cancer journey, and through
- specific support for family members when necessary
- specific protection for employees ( sick leave, part time job,
guarantee not to be dismissed)
- help for vulnerable groups (immigration, unemployed people)
and those with caner related disabilities
- offer of education, training and job opportunities
- specific practical support
Rehabilitation must be available for patients both during and after
treatment. This will restore health, emotional well being and
provide a better quality of life.
Rehabilitation requires a comprehensive (physical, social,
occupational, psychological
and spiritual rehabilitation) and multidisciplinary approach.
Relevant components are:
- comprehensive approach to rehabilitation
- patient-tailored plan for rehabilitation as an integrated part of
the treatment
- on-going education programmes about cancer treatments,
side effects of treatments and survivorship issues
- prevention, management and treatment of side effects (for
example, post treatment depression)
- the potential for reconstructive surgery
- facilitate access to employment opportunities
- support for reintegration into the workplace to prevent
stigmatisation and prejudice
- access to insurance and bank loans
- homecare
- support the concept of self management
- help health care professionals to support patients and their
families to take more control over what is happening to them
8. Palliation
9. Patients advocacy
Providing palliative treatment and care, and facilitating access to
them must be promoted to minimise problems and improve
support for patients and their family at the end of life.
Relevant components are:
- flexible and personalised solutions for each patient
- the patient’s right to choose the place of care and of death,
and to have access to effective symptom control
- provide support to family before and after death
- facilitate access to general and specialist palliative care
- access to a multidisciplinary team
Patients’ advocacy must empower patients to be a partner and
active participant with the health and social care providers. This
will help to ensure optimum treatment and outcome. Patients’
advocacy must also recognise the role of patients in the planning
and development of services.
Relevant components are:
- patient associations providing help in public authorities and
- constructive dialogue between patients, associations and the
main stakeholders
- promotion of networking with different organisations
- training and ongoing support for patients to be effective
About ECL:
What we do:
The association of European Cancer Leagues is a federation of
national and regional Cancer Leagues, made up of patients’
coalitions and cancer control’s professionals. ECL is located in
Brussels and is a non-for-profit association, under Belgian law.
 Information and Prevention campaigns
It was created in 1980 and consists of 34 members, located over
extended Europe. Our members join forces to provide support to
cancer patients, their relatives and improve the quality of
All together, the leagues spend more than 120 Million Euro to fight
cancer, with a total staff of about 2,500 people and over 200,000
volunteers. Most of their budgets are spent in Patients’ care,
Prevention and Research.
The objectives of the association are to improve communication,
to promote, enhance and co-ordinate collaboration between
European leagues/societies and to foster fruitful activities between
European cancer leagues and organisations, which are members
of the ECL, in order to reduce the growing cancer burden in
 European Union: Advocacy and monitoring
 Consider and recommend policy positions in various cancer
related fields
 Tobacco Control: advising and influencing EU decision makers
for tobacco control legislation
 Build network of cancer leagues professionals to exchange
best practices and tips
 Propose guidelines and advice to develop and implement
innovative plans
To achieve its missions, ECL organises, manages or develops:
- workshops
- technical meetings
- joint projects with organisations having similar aims
- exchange of information material
- set up working groups
For further information please contact the ECL secretariat:
ECL co-ordinator, Catherine Hartmann
Chaussée de Louvain, 479
B- 1030 Brussels, Belgium
Tel: +32 (0)2 743 3705; Fax: +32 (0)2 734 9250

Patients` rights guidelines - European Public Health Alliance