This story is part of our series of articles on metastatic breast cancer.
A group of metastatic breast cancer experts has urged policymakers to empower patients with greater choice and participation in their treatment and care, to improve the quality of life of patients, their carers and families.
Breast cancer is the most common form of cancer in women and the second most common form of cancer overall, after lung cancer. It kills more than 90,000 people in the EU each year.
Almost one-third of all breast cancer patients develop metastasis, an advanced stage of the disease that spreads to other parts of the body. Despite being so common, survival rates among patients that develop metastatic breast cancer (MBC) are below 20%.
“Urgent policy action is needed for prevention as well as diagnosis of cancer at an early stage in order to save lives and social costs, and to fight the ever-increasing burden of chronic disease,” MEP Daciana Sarbu, who sits on the European Parliament’s environment, public health and food safety committee, told EURACTIV.com.
An expert working group of MBC stakeholders, including organisations representing doctors, nurses, carers and researchers, has called on policymakers to develop a holistic support system to allow patients and carers to balance MBC treatment with other aspects of their lives. The working group published its Policy Roadmap in October.
Making informed and empowered choices
It is common for MBC patients to feel disempowered by their condition and treatment options. But this situation can be massively improved by health policies that aim to involve patients actively in decisions that concern them, the experts say.
According to the roadmap, some 63% of patients want to participate actively in decisions about their treatment, “and the portion of patients who state such a preference is growing over time”.
Improved access to information and professional guidance on the risks, benefits, and uncertainties of certain treatment options can empower MBC patients to make informed choices that allow them to balance all aspects of their lives in the way most appropriate for them.
The roadmap recommended that the European Commission Initiative on Breast Cancer (ECIBC) to specifically address the needs of metastatic breast cancer patients and create a dedicated pathway for these patients, including a system of Specialised Breast Units (SBUs) that should ensure patients and informal carers’ access to supporting services for ongoing physical health, psychological and social needs. “Carers can play a key role in helping with this decision-making,” Claire Champeix, a policy officer for Eurocarers, the European association for carers, told EURACTIV.
To help achieve this aim, the roadmap urged the MBC advocacy community to “collaborate with key stakeholders to build MBC decision-aids for both patients and their informal carers, building on existing best practice methodologies”.
It also called on national health services to train doctors and healthcare providers in shared decision-making and communication, a commitment already made by the European Society for Medical Oncology (ESMO) and the American Society of Clinical Oncology (ASCO). Both societies have already included in their oncology curriculums the requirement for healthcare professionals to be trained in communication.
“As MBC is increasingly a long-term condition, with many elements of a chronic disease, there are metastatic cancer patients who still live an active and professional life,” the policy roadmap said.
But patients often have difficulty juggling their work with their care needs and many feel unable to tell their employer about their illness, for fear of damaging working relationships and perceptions of their competence. According to the roadmap, on top of the dramatic effect this can have on patients’ quality of life, it can also greatly increase the pressure on those who care for them, in addition to other family and professional commitments.
“We must tackle the health inequalities between EU member states, and it is important that the European Commission presents guidelines for companies in order to limit discrimination at the workplace and job losses for patients with MBC,” said Sarbu.
The MBC stakeholders noted that the European Pillar of Social Rights would help the European Commission to ensure EU member states adequately protect workers in this fragile situation. This policy framework aims to guarantee equal opportunities in the labour market, fair working conditions and social protection and inclusion for all EU citizens.
It will be proclaimed jointly by the European Commission, Parliament, and Council at a special social summit in Sweden on 17 November.
Yet while the Pillar of Social Rights will go some way to improving the quality of life of MBC patients, the roadmap highlighted the need to formalise the role of their carers and ensure they enjoy adequate social protection and recognition for their work.
Formalising support for informal carers
Care for MBC patients is often provided on an informal basis by family members or people close to the patient. These informal carers most often get no financial compensation and have to make big changes to their own lives to provide the support required, including bearing part of the financial burden.
“Many informal carers are forced to reduce their working hours and are sometimes pushed to quit their jobs in order to manage the responsibility of caring for someone with a severe and long-term disease,” the policy roadmap states.
“Relatives should have the opportunity to make choices about the level and the type of care they are likely to provide and be supported for the care they are providing,” Champeix said.
Yet support and recognition for the carers themselves are severely lacking in many countries, affecting not only their quality of life and their own health but in some cases also the quality of care they can provide.
“Carers need to be supported through formal recognition, information, advice and guidance, training, flexibility on the workplace, financial compensation, as well as access to quality and affordable long-term care services,” Champeix added.
The experts behind the policy roadmap pointed to Austria as an example of best practice policymakers across Europe should follow. Here, informal carers are entitled to training and financial aid and their right to recovery time is protected by the national labour law.
The policy roadmap’s authors went on the recommend that carers’ organisations be involved in national healthcare discussions, that ‘informal care’ be officially recognised by the MBC clinical community and that national governments show their concrete support by applying the principles of the Pillar of Social Rights.