10. Reintegration

You have a right to:

Be fully reintegrated into society and protected from cancer-related stigma and discrimination, so that, in so far as is possible, you can return to work and a normal life.

Three key questions that every cancer patient may choose to ask:   

1. Should I anticipate any difficulties in fully reintegrating into society, including within my family and in social and work environments?
   
   
2. If I do experience problems in any of these areas, to whom can I turn for help and advice?
   
   
3. Where can I obtain advice on the legal issues that may relate to my employment, financial issues such as insurance and family issues such as international travel and holidays?

Explanation

European cancer patients should be able to reintegrate into society to the fullest extent possible, regardless of many factors including age, place of residence, sexual preference, gender, ethnicity, cognitive ability, religion, psychological state, education and job, and socio-economic class. However, increasing numbers of cancer survivors are facing challenges in some or all of these areas as they reintegrate into society. Work-associated stigma may include loss of employment, lack of opportunities for promotion or international work-related travel. 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 to contribute to society. These supports and advice should be signposted at the earliest possible stage by the cancer care team; some may be delivered by the cancer care teams themselves while others may be provided through patient advocacy groups (who will have specific expertise in advising survivors on social legislation, talking to employers, etc), community groups and government agencies or employers.

The diagnosis of cancer may disrupt family and social life and may lead to substantial absence from work through sickness. Cancer survivors may have long-term symptoms as a consequence of their disease or its treatment. Fatigue, emotional and mental health problems, persistent symptoms or reduced attention and memory can significantly diminish a cancer survivor’s working abilities, usually in the short term but occasionally in the longer term. There is an increased risk of unemployment among cancer survivors, perhaps 1.4 times higher than the general population of similar age.

Interventions that can help with reintegration into the workplace and other aspects of life can include workplace arrangements to allow flexible working or reduced working hours, modifications of duties or the provision of assistance in a working role, and psychological and educational interventions. These may sometimes be provided by telephone or websites or through patient advocacy groups specialising in this type of support. Employers, however well motivated, may need some help to design interventions that support cancer patients in returning to the workplace. Healthcare teams and some patient advocacy organisations can help to guide back-to–work strategies, including making agreements with the employer at the time of diagnosis and discussion with Human Resource departments on return to work. Some countries offer flexible reintegration schemes through social services. At the moment, provision of support for cancer patients returning to the workplace varies substantially across Europe. Cancer patients should also have the Right to be Forgotten, so that a previous diagnosis and treatment does not stigmatise cancer survivors in any way on their journey to return to normal living.

Supporting Literature and Evidence

The physical, social and psychological challenges faced by cancer survivors have been summarised in The Code 7, 8 and 9. However, a critically important aspect of reintegrating into normal life for many cancer patients involves returning to work (RTW) and normal living. The European Agency for Safety and Health at Work (EASHW) in 2018 reported on “Rehabilitation and return to work after cancer - instruments and practice” (62) and evaluated good practice, case studies, qualitative research, and stakeholder views. They found that the consequences of cancer and its treatment could result for some patients in diminished work productivity and ability and reduced functioning at work early in the treatment process as expected, but these consequences can also last years after diagnosis, when they are especially problematic. Key findings were:

• The total economic loss to the European Union (EU) due to lost working days to cancer was estimated to be EUR 9.5 billion in 2009, not all related to unsuccessful RTW.
  
  
• When returning to work, survivors may face difficulties in balancing work and treatment demands, including negative attitudes or behaviours among their colleagues and employers.
  
  
• Small or medium sized companies (< 250 workers), especially smaller ones, and the self-employed lack resources for RTW strategies or programmes, and support for them is needed.
  
  
• Results from the modest scientific literature show that only multidisciplinary interventions that combine vocational counselling with patient counselling and physical training have increased RTW rates, although only to a small extent.
  
  
• Workplace accommodations provided more flexibility or a reduction in working time, including paid leave for healthcare appointments, adjustments to workload and duties, and the provision of assistance. Psycho-educational interventions, such as advising cancer survivors by telephone or providing information on a dedicated website, were employed.

EASHW concluded that a range of RTW instruments, practices, policies and interventions exist for workers with cancer, and these are considered essential for improving the work outcomes of those diagnosed with cancer.

The Association of European Cancer Leagues (ECL, 48) has brought the issues and potential solutions to the challenges faced by cancer patients at RTW (48, 204). They concluded that of all chronic conditions, cancer has by far the highest prevalence of work loss and reduction in work functioning, with an average return to work rate of 64% after 18 months, and a risk of unemployment 37% higher after cancer diagnosis (174, 204).

In the workplace, employers face a communication struggle with employee diagnosed with cancer with myths, attitudes, excessive empathy and pity and often do not understand the needs of patient to return to work (RTW). The necessary adjustment for RTW is often not in place and an employer may show little confidence in an employee with cancer. They may struggle to find a balance between the company’s and the employee’s needs. On the other hand, employees may feel guilty about taking time off work and be nervous about job security and promotion aspirations. They may fear an uncertain future, be embarrassed with colleagues, lack personal confidence to work efficiently and have financial concerns connected to diagnosis and treatment. All this is happening when they face a life threatening and fearful illness and often complex treatment and side effects.

ECL (Table 12 and Refs 48, 204) urges employers:

1. Do not postpone the RTW problem and deal with it as soon as possible
2. Support a good and fluid communication during the whole pathway
3. Be flexible on working conditions where possible

Table 12. Advice to employers from the Association of European Cancer Leagues (204)

These solutions are aimed add advising employers and employees but they can provide a useful framework for planning for self-employed patients and their families, who will face considerable, work-related challenges.