Living with cancer

//An ICO programme aims to alleviate the suffering of cancer patients and their families

Because cancer is one of the main causes of death worldwide, reducing its impact primarily means curbing its incidence. However, the impact of cancer goes beyond the number of people with the disease because there are also the psychological, family, professional and social consequences of cancer for patients and their immediate environment. The Catalan Institute of Oncology (ICO) is well aware of this. In response, it has launched the Living with cancer programme (Conviure amb el càncer).

The ICO’s extensive knowledge of cancer comes from having worked exclusively in this field. The centre has a comprehensive approach to the disease, and is comprised of multidisciplinary teams that cover all related areas, including early detection programmes, palliative care, diagnosis, treatment, medical care, research and training. As ICO staff were aware of the vulnerability associated with cancer, they began to introduce measures to reduce the suffering of patients and families living with the disease, which may become a lifelong challenge, and this is what the programme is about.

The collateral effects of cancer

Living with cancer aims to improve the well-being and quality of life of cancer patients and those in their immediate environment. The programme is based on the assumption that “if the main determinants of health are social, the solutions also have to be social”. Advances in medicine mean that for the first time in the history of humanity, almost half the total number of cases of cancer can be cured. However, social progress has not kept pace with scientific advances.

«We try to give patients and their families all the things that they need but that the government cannot provide»

In the words of Anna Rodríguez, the ICO’s Director of Strategy and Projects and the driving force behind the programme, “During the course of the disease we try to help, support and guide patients and their families by giving them all the things that they need but that the government cannot provide. Living with cancer is very hard and patients are affected by social, professional and family issues, among others. Of course, they also need the right diagnosis and treatment. But what about the other issues related to the disease?”

One of the programme’s first actions was empowerment through education, to increase patients’ knowledge of the disease and help them make appropriate decisions. The ICO has also introduced a range of services to ensure the comfort and meet the needs of patients and carers. For example, facilities have been adapted: works of art have been hung throughout the centre to make hospital stays and waits more pleasant, and a room has been set aside so that people have a quiet space to be alone or mourn in private. In addition, the ICO organizes workshops on skincare, bearing in mind that skin tends to suffer during chemotherapy, and on personal image, to provide beauty tips for patients including how to recreate eyebrows with makeup, how to wear a wig and how to tie a headscarf.

Corporate social responsibility

The ICO has also started a corporate social responsibility initiative to encourage institutions to make donations and collaborate for the benefit of patients. “We try to ensure that patients can obtain what we, as a public entity, cannot give them. Three years ago we signed an agreement with the Barcelona Bar Association. We have a free legal advice service, but it is very slow. And time is precisely something that our patients do not have. When a social worker detects a problem that needs to be addressed with a certain degree of urgency, and the patient lacks financial resources, we pass the case on the Barcelona Bar Association. Every year, around 20 to 22 people benefit from this agreement”.

Likewise, an agreement has been made with a funeral service. “Legally, everyone has the right to be buried. However, welfare funerals are very basic: there is no wake, flowers, no extras. We have managed to arrange funerals that are slightly more elaborate, but very cheap or free, for families with financial difficulties. Four or five people a year have funerals under this agreement”. Two initiatives have been launched for women with breast cancer: physiotherapy sessions to prevent or relieve lymphedema, an abnormal accumulation of fluid caused by the obstruction of lymphatic vessels; and the creation of heart-shaped cushions that help to bear the discomfort caused by mastectomy. “We pay for the material and the stuffing, and a group of volunteers sew them”.

«What really distinguishes us is that we consider all the problems patients may have, not just their medical ones»

Anna Rodríguez uses two words frequently: friendly and caring. The hospital must be friendly and the treatment that patients receive from professionals must be caring. “The ICO has some things in common with other institutions, such as the presence of psycho-oncologists and social workers. However, I think that what really distinguishes us is this sensitivity: we consider all the problems patients may have, not just their medical ones; we take these problems into account; and we try to address them. How do we help? By using our imagination, looking for ingenious methods, and trying to be creative. We should never lose sight of these needs, because they are fundamental to patients and carers. And our professionals are aware of them: they know how important these needs are.”

The Living with cancer programme exists because of collaboration agreements with institutions and companies, private donations and the participation of volunteers. The ICO webpage includes information on different ways to take part in the project.

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