EUROPEAN GUIDELINES FOR CANCER PATIENTS RIGHTS Edited by the ECL s European network on patients' and health professionals rights and duties Athens, 16 th 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. 1. 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 - agreed quality standards, considering the existing European standards - qualified and multidisciplinary teams - quality and availability of patient communication and information - 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
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. - 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 relatives - 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 professionals The relationships must be developed in mutual respect and confidence. These relationships should be defined in terms of rights connected to duties and responsibilities. - 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. 3 4
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 organizations. - 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 relatives 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 - 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 community - support groups - internet technologies to develop networking opportunities for support and for patients to exchange experiences with former patients - former patients can provide informal support for those newly diagnosed. - access to a telephone helpline - importance of self-help and support groups 5 6
6. Social and financial support 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 - advice on the availability of financial help - help through knowledge of statutory benefits and in making application - support is needed throughout the cancer journey, and through survivorship - 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 7. Rehabilitation 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. - 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 7 8
8. Palliation 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. - 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 9. Patients advocacy 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. - patient associations providing help in public authorities and hospitals - constructive dialogue between patients, associations and the main stakeholders - promotion of networking with different organisations - training and ongoing support for patients to be effective advocates 9 10
About ECL: 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. 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 treatments. 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 Europe. What we do: Information and Prevention campaigns 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 http://ecl.uicc.org 11 12