By Ian Olver, Professor of Translational Cancer Research and Director of the Sansom Institute for Health Research, University of South Australia, for oncologynews.com.au.
When considering the potential harms of treatment for cancer most would focus on physical side effects in individual patients but the topic is far broader.
Patients’ perceptions of harm
Luke Ryan, a writer and comedian likes to focus on the everyday issues. He recounted his experience of a procedure that most would consider somewhat incidental to the experience of being treated for cancer; that of collecting sperm before treatment. Despite having residual side effects like tinnitus, managing with one leg shorter than the other and now facing a further knee replacement he remembers every detail of the staff attitudes and sterile clinical environment in which the collection took place. That is a “harm” that the health system could fix if it took a patient centred approach. Patients often regard anything unexpected or not going to plan, like a prolonged wait for a service, as an error that causes harm.
Drug related harm
The major physical harms of cancer treatment relate to the administration of cytotoxic drugs. It seems enough that normal dividing cells are damaged in addition to the cancer cells resulting in side effects such as myelosuppression and mucositis, but this is further compounded if medication errors occur. It is not only prescription errors but the potential inappropriate dosing of outlier individuals when body surface area approximations are used to calculate the initial dose. Even other calculations such as the use of creatinine clearance for carboplatin dosing introduce the possibility of errors of measurement or calculation of renal function on which the dosing formula is based.
A solution to help eliminate dosing errors, that Christine Carrington reported, was standardising the regimens and computerising the process. This does reduce dosing errors but can result in mistakes when demographic data is entered from another data collection. Checking of the doses is still needed in case inaccurate parameters were entered into the system. It can also be problematic when regimens are individualised or chemotherapy drugs deleted for subsequent courses or without changing the supportive care drugs prescribed. The process of administration needs personalising although the use of strategies like bar codes can assist with delivering the correct drugs to the correct patients.
Psychological issues of patients facing treatment are more than just anxiety and depression, which can be a source of stigmatisation. The models often used are from traditional psychopathology and treatments such as cognitive behavioural therapy are utilised. It is likely to be more acceptable and accurate, to speak of distress, often promoted as the sixth vital sign and the severity of which can be measured on a simple 10 point scale, often referred to as a distress thermometer.
Annabel Pollard contends that there should be a shift to a trans-diagnostic approach to diagnosing and treating the psychosocial impact of cancer. This acknowledges everyday experiences like managing the impact of the disease, managing loss of function and life opportunities and stress on managing relationships as both normal and adaptive despite psychological suffering. Subclinical mood disturbances may be quite distressing.
Instead of screening for psychological disorders, screening for vulnerability which will depend on disease characteristics and personality, which in turn may depend on early attachment experiences, may allow early referral of patients most likely to experience distress and this in turn will enable a preventive approach so that patients better cope with the burden of their disease and its treatment.
Ethical dimensions of harm in treatment
The concept of harm from cancer treatment can be broadened to negative impacts on society. Jennifer Morris argues that the culture of expecting patients to be positive is forcing adaption to a stereotype which will help sanitise cancer in the public view. There can be a veiled blaming of the “victim” for failing to display the expected positive image. Furthermore, the battle against cancer can help stigmatise disability, as cancer patients fight hard to prevent themselves becoming one of the disabled.
In the public health arena, the dominance of cancer and the public fear factor can skew research funding. This fear is highlighted by every report of a food or environmental agent causing cancer. The use of war language creates winners and losers. Moreover cancer winners are often portrayed as underdog winners, which creates more public passion. The fact that cancer is a chronic illness with the possibility of a curative treatment, differentiates it from other chronic illnesses and can create an enthusiasm for treating cancer, to the detriment of other chronic diseases (which ironically can also affect patients with cancer).
The constant emphasis on treatment can serve to normalise sometimes exorbitant costs of the treatments. Also, marginal technologies can be promoted by entrepreneurs as standard of care, and the emergence of crowd sourced funding to enable individuals to pursue expensive treatments can undermining a universal health care system. The other issue with the public focus on cancer treatment is that is can detract from cancer prevention funding, despite the potential impact of cancer prevention being greater over time.
In summary, whether we are dealing with individuals and physical or psychological effects or whether we take a whole of society view, the emphasis should be on help without harm.
Ian chaired the ‘Harms of Treatment’ session at the recent COSA ASM in Hobart.