The European Code of Cancer Practice (The Code), translated in many languages, is a citizen and patient-centred manifesto of the core requirements for good clinical cancer practice, in order to improve outcomes for all of Europe’s cancer patients.
It has been co-produced by a team of cancer patients, patient advocates and cancer professionals. It has its origins in the European Cancer Patient Bill of Rights, which was launched in the European Parliament on World Cancer Day 2014 and won the prestigious 2018 European Health Award.
The Code focusses on informing and assisting cancer patients at all stages of their cancer journey. It sets out a series of 10 key overarching rights, and in particular signposts what patients should expect from their health system, in order for them to achieve the best possible outcomes. It is an empowerment tool to ensure the best available care is delivered for European citizens and patients. Each of the 10 overarching rights is linked to three questions that a patient/parent/guardian may choose to ask their healthcare professionals.
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European cancer patients should receive affordable, best available cancer care in their own country which is comparable to other high quality cancer services in Europe. The cornerstone of The Code is the right of Europe’s cancer patients to have equal access to such cancer care, with the choice where to be treated and by whom, Each cancer patient, with their family/carer, should have the opportunity to discuss with their healthcare professionals whether the care that they will receive is the best available within their healthcare system and whether it is of the standard of good clinical cancer practice required by clinical guidelines.
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European cancer patients are entitled to reliable, good quality, comprehensive information from their hospital about their disease, its treatment and the consequences of that treatment. Patients should be informed that they can ask questions about their disease and its treatment, as well as receiving information on nutrition, physical activity, psychological aspects, etc. The hospital should also refer the patient to patient organisations which can provide invaluable information and support at many levels. Information given at a consultation should be supported with good quality, relevant and clearly-written material, with appropriate explanations for the individual patient.
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European cancer patients should be given access to information about the care provided and the outcomes achieved by their specific cancer healthcare team, allowing patients to take informed decisions about their treatment and where it is delivered. Specialised cancer care should be given by a team of healthcare professionals with expertise in a specific cancer and its treatment. Patients have the right to know the level of expertise and experience of healthcare professionals and teams who will be looking after them. Application of the European Cancer Organisation’s Essential Requirements for Quality Cancer Care can help support the delivery of best available care.
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European cancer patients’ care should be organised so that the best decisions about choices of treatment are made, ensuring best available care is delivered in the most effective and timely way, as close to the patient’s home as is safely possible. The two organisational structures recommended are the specialised multidisciplinary team (MDT) and the cancer network. These bring together all of the different healthcare professionals, whose combined knowledge ensures that the best treatment options are discussed with the patient and that Shared Decision-Making (SDM) takes place, thus ensuring a well-informed choice is made about the patient’s individual treatment and care.
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Participate in Shared Decision-Making with your healthcare team about all aspects of your treatment and care.
European cancer patients should have a choice as to how decisions are taken about their care. That choice should include Shared Decision-Making (SDM). Increasingly, a shared or collaborative approach is being employed, in which a doctor recommends a particular treatment, but takes account of the patient’s situation and views after careful discussion. SDM allows patients to fully inform themselves before making any choices about their treatment. It is a key component of patient involvement and engagemen in cancer caret, with healthcare professionals encouraging patients to influence how their own care and healthcare services are delivered.
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European cancer patients should be informed about any ongoing research and innovation (including clinical trials) within the cancer service delivering their care. Clinical cancer research provides the evidence which ensures patients receive the best available care, enhancing healthcare delivery, leading to better outcomes and improved quality-of-life for patients. Evidence indicates that research-active hospitals provide better care, achieve higher levels of patient satisfaction and deliver improved survival for patients compared to hospitals not active in research. Patients must be assured by the clinical team that a decision to not participate in clinical research or to withdraw from a research study, will not adversely affect their care.
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European cancer patients should expect to live as normally as possible with the optimum quality-of-life following their diagnosis, during treatment and through survivorship. Patients must be thoroughly informed on both medical and non-medical aspects of care and survivorship. Patients and their healthcare professionals must work together to preserve quality-of-life, while maximising chances of survival or cure. Referring patients to patient advocacy groups will provide additional support, particularly on the issues that patients specifically find challenging. Healthcare services should provide psychological support, to support the person’s mental wellbeing and mobilize advice and support to reduce social and financial difficulties.
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European cancer patients should have access to supportive and palliative care at any point of their cancer journey, from diagnosis, as survivors or in end-of-life care. As a patient, you have the right not to receive specific anti-cancer treatment such as surgery, radiotherapy or chemotherapy, but to choose supportive and palliative care to alleviate your symptoms. You have the right to make your own end-of-life decisions and for your choices to be respected within the current laws of the country within which you are receiving your care. Close working between cancer care and palliative care teams is a feature of good clinical cancer practice.
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European cancer patients’ care should be supported in their needs as a cancer survivor. In response to the growing number of people surviving cancer in Europe, there has been increasing focus on the quality of survival. High-quality cancer care should include an active approach to the challenges that patients face as cancer survivors. Every patient should be given a survivorship cancer plan, prepared for them in consultation with their cancer care professionals and fully explained. Patient advocacy organisations have a lot of experience in the practical issues that arise (e.g. relating to work, travel, leisure activities etc) and should be consulted.
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European cancer patients should be able to reintegrate into society to the fullest extent possible. However, increasingly cancer survivors are facing challenges as they reintegrate into society. Survivors should be able to obtain appropriate support and advice to help them with the process of reintegration, to sustain their quality-of-life, to ensure their ability to earn a living and to have an active and fulfilling social life and contribute to society. Cancer patients should also have the Right to be Forgotten, so that a previous diagnosis does not stigmatise cancer survivors on their journey to return to normal living.
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