European Cancer Patient’s Bill of Rights – Lessons Learned and Our Recommendations for Patients and Families

Our approach to cancer prevention, diagnosis and treatment is developing in our country as worldwide, and public awareness is increasing. Organizations and countries that have renewed themselves, improved their approach and defined patient rights can guide us. For this purpose, we will share the European Cancer Patient's Bill of Rightsin its latest form revised in 2016.

The European Cancer Patient's Bill of Rights makes extremely important points for cancer patients. We sincerely hope patients and families learn their rights during diagnosis and treatment, express appropriate demands and contribute to national awareness. We have tried to translate the declaration into Turkish and make it understandable with our own commentary.

The Approved Articles Address Three Basic Principles: 

1. Patients' right to accurate information from healthcare professionals and proactive participation in treatment.
2. The right to optimal, timely access to appropriate expertise during diagnosis and treatment supported by scientific innovation.
3. The right to appropriate, ongoing prevention programs; evidence-based innovative early diagnosis and treatment led by competent professionals; rehabilitation; and care within systems providing the best quality of life and affordable healthcare.

Let Us Examine These Three Principles from an Oncologist's Perspective in Our Country

Over the last 20 years, our efforts have only now brought us to openly discussing cancer diagnosis with patients in our country. "Do not discuss the cancer diagnosis with the patient; it will upset them. Please do not tell my father he has cancer" has gradually begun to be replaced by "Doctor, we do not know how to talk to our patient. Could you discuss the diagnosis with my father? We do not want it hidden; knowing his diagnosis is his right" . Although this change pleases us, we still have a long way to go regarding the right of cancer patients in our country to information.

Related Topic:

• How should patients, families and physicians communicate?

Approaches such as "Does a cancer patient really need to know the diagnosis?", "It is fine if they do not know" or "It should be hidden" are outdated. For years in routine practice, we sadly encountered two negative consequences of this approach. First, when an early-stage diagnosis is hidden, patients may discover it accidentally at any point during follow-up, through family whispers or seeing a medical report about their illness.

Consider a patient diagnosed early with lung cancer who has undergone surgery. The physician could say: "We diagnosed lung cancer and you had surgery. You are very fortunate: early detection and successful surgery saved your life. You must stop smoking, look after your health and attend regular checks" . Instead, if the diagnosis is hidden for fear of upsetting them, accidental discovery may cause far greater distress than expected, withdrawal and severe depression . They may even conclude that their cancer is actually very advanced and was hidden for that reason. Missed follow-up, failure to stop harmful smoking, self-destructive behavior because they believe they will die anyway, damaged relationships with family and friends, and loss of work and finances can follow.

Consider a similar patient, this time with stage 4 lung cancer. Concealment and accidental discovery may lead them to underestimate the illness and avoid treatment, missing many options now proven successful. They may lose trust in their doctor and family and, above all, feel hurt and withdrawn because they were excluded from decisions about their body and future, facing psychological distress. A patient given chemotherapy or radiotherapy without adequate information cannot be expected to manage treatment successfully without knowing what they face or how to cope.

• Important questions people with advanced cancer can ask their doctors

Apart from patients with intellectual disabilities, individuals receiving difficult treatments in clinics such as cancer units cannot be assumed to have no curiosity or questions about their illness.

We oncologists have encountered variations of these scenarios hundreds of times. The Hippocratic or paternalistic, protective medical attitude supporting this approach is now giving way in our country to shared, informative care. This paternalistic attitude, dominant in America until the 1960s, was rapidly abandoned in the United States as individual rights and freedoms were defined and concealing information became recognized as an offense. Our country's legal regulations also follow this direction.

Nevertheless, just as patients have a right to information, some do not wish to learn adverse information about their bodies and feel unable to bear its burden. Identifying and protecting these patients is a responsibility of oncology clinics and a universal patient right. Everything concerning diagnosis and treatment is then shared with a family representative appointed by the patient, and medical responsibilities are shared with that person under the patient's legal authorization.

It should be remembered that recent years have brought rapid changes in cancer diagnosis and treatment through dizzying innovations . Patient selection and participation in treatment decisions are far more important than before. To illustrate their importance, consider a prostate cancer scenario:

Internationally approved options for early-stage prostate cancer include open prostate surgery, laparoscopic prostate surgery, robotic prostate surgery, radiotherapy, radiosurgery, brachytherapy (radioactive seeds implanted in the prostate), HIFU (ultrasound-wave treatment), cryoablation (freezing), radiofrequency ablation, nano-knife, one or several of these combined, with long-term hormonal therapy added.

For just one patient, scientific evidence and international approvals can support all these options. Each has advantages and disadvantages. Some offer high success but higher lifelong urinary incontinence and sexual dysfunction rates; others have fewer such side effects but slightly lower success. The treating team's experience is extremely important, and some methods impose financial burdens. Just as hiding prostate cancer makes managing treatment impossible, the situation is very similar in other cancers.

Our Strengths and Greatest Shortcoming in Cancer Care

Time is extremely important in cancer treatment, as is access to evidence-based innovative treatments. Diagnostic appointment delays due to physicians or patient volume have markedly decreased compared with the past in our country. We are better placed than many European countries in this respect. Advanced health technologies and highly modern hospitals are available nationwide. From an oncologist's perspective, our greatest shortcomings are limited multidisciplinary oncology services and a lack of accreditation in cancer treatment fields. Alongside chemotherapy, surgery, immunotherapyand radiotherapy, which we successfully use in treating cancer patients, our country is still developing in oncological rehabilitation, quality-of-life approaches, evidence-based complementary medicine and palliative medicine . It is extremely important that patients and families be informed and make demands in these areas. Quality of life matters as much as recovery or longer survival.

Clinical research is another subject to address. Even in developed countries, innovative cancer treatments have reached costs that strain national economies. Supporting clinical research, raising public awareness and bringing trials of promising new treatments to our country may ease economic pressures and provide access to new drugs.

Access to clinical research is one of the most important issues emphasized in the cancer patient rights declaration.

For cancer patient rights, the development of civil society organizations and their integration with specialist associations and decision-making government bodies is another important need. We have seen efforts in recent years, but remain behind developed countries; progress will require everyone's work and support. Defining cancer patient rights and raising awareness is a process, and we need everyone's support to advance it.

European Cancer Patient's Bill of Rights 2016

Article 1: Every European Citizen's Right to Accurate Information and Proactive Involvement in Their Care.

1.1 The right to access evidence-based public health interventions that can prevent cancer.

1.2 The right to access accredited cancer diagnosis and screening services of optimal quality.

1.3 The right to access all information about their health and proactively participate in treatment decisions.

1.4 The right to patient-centered information in an understandable format and language, an optimal standard of care and information at every stage of the cancer journey.

1.5 The right to know that the cancer unit or center meets accepted optimal quality thresholds for appropriate expertise in cancer care.

1.5.1 The right, before treatment, to transparency in access to all national anonymized data on treatments and clinical outcomes from healthcare institutions, cancer registries and independent audit programs.

1.6 The right to a second opinion before any treatment and to a clear, transparent personalized care plan for their disease.

1.7 The right to confidentiality of patient data and respect for privacy.

1.8 The right to access information on local, national and European cancer research and innovation activities.

1.9 The right for cancer survivors to adequate information and support services for post-treatment problems.

1.10 The right to representation and support through civil society organizations working for equality in all areas affecting patients' health and well-being.

Article 2: Every European Citizen's Right to Timely Access to Appropriate Cancer Diagnosis and Treatment Supported by Research and Innovation.

2.1 The right to accredited diagnostic methods ensuring accurate cancer diagnosis as quickly as possible.

2.1a The right to a diagnostic process led by an expert, experienced clinician and delivered accurately and compassionately.

2.2 The right to optimal-quality, timely access to oncology care, including research and innovation, to obtain the best possible outcomes.

2.3 The right to access, as locally and centrally as possible, diagnostic and treatment options offered by nationally and internationally approved guidelines.

2.4 The right to appropriate psychological support at every stage of screening, diagnosis, treatment, quality of life and survivorship.

2.5 The right to choose the location of diagnosis and treatment within national borders.

2.6 The right to rapid access to the latest approved innovations in cancer diagnosis and treatment.

2.7 The right to the best care according to need rather than ability to pay.

2.8 The right to trials appropriate to their cancer type and access to ongoing clinical research.

2.9 The right for children with cancer to treatment at a competent pediatric oncology center / unit.

Article 3: Every European Citizen's Right to Improved Care within Health Systems for Patient Rehabilitation and the Best Quality of Life

3.1 Patient care services organized according to national guidelines, including patient representatives, are regularly reviewed by external experts and supported by National Cancer Control Programs.

3.2 As part of the National Cancer Control Program, care outcomes must be audited to ensure optimal progress and benefit for cancer patients.

3.3 The right to cost-effective care at every stage of the cancer diagnosis and treatment journey.

3.4 The right for cancer survivors to long-term follow-up, support for optimal quality of life, social integration and return to work.

3.5 Ensuring optimal pain and symptom management strategies for cancer patients.

3.6 Promoting and maintaining adequate expertise and experience in treating specific cancers, including education and training for all relevant healthcare and patient-care professionals.

3.7 Recognizing and accepting cancer patient organizations as equal partners in decisions across cancer care, research and innovation.

3.8 Coordinating cancer treatments through multidisciplinary teams according to national guidelines.

3.9 The right to timely, transparent referral and follow-up between community / primary healthcare workers and cancer units or centers.

3.10 The right to assessment and necessary treatment within an optimal, predetermined timeframe.

3.11 The right to protection from harm caused by potentially poor healthcare, medical malpractice or errors.

3.12 The right to support for high-quality clinical research and encouragement of patient participation.

3.13 The right for patients, caregivers and patient organizations to participate in designing clinical research for cancer patients.

3.14 The right to a high-quality integrated palliative care strategy.

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