Gabriella Pravettoni^1,2 and Soumitra Shankar Datta^3.4

¹Department of Oncology and Hemato-Oncology (DIPO), University of Milan, Italy

² IEO, European Institute of Oncology IRCCS, Milan, Italy

³Department of Palliative Care and Psycho-oncology, Tata Medical Centre, Kolkata, India

⁴UCL EGA Institute for Women’s Health, University College London, UK

Corresponding author: Soumitra Shankar Datta E-mail: ssdatta2000@yahoo.com

Around 1 in 6 deaths worldwide is due to cancer and the World Health Organisation (WHO) reported cancer as the second leading cause of mortality resulting in an estimated 9.6 million deaths in 2018. Even with the latest medical and technological advancements, there still remains a significant gap in the medical outcomes that have been achieved and those which may be desired. Scientific developments need to take into account the human, contextual and social factors for an equitable health care delivery and bring the benefits of advancement of knowledge to a larger proportion of the human population. The environment in which a person grows up, behavioural factors of the patient prior to diagnosis, availability and access to health care facilities and treatment adherence all have significant impact on the outcome of many cancers. Psycho-oncology aspires to explore all the socio-behavioural aspects of oncology over and above the direct psychological impact of the disease.

As cancer happens to an individual, the paradigm of patient-centered care is relevant in every sense of the word in the field of oncology. Individual values, preferences, needs and beliefs affect patients’ decision making. Similarly, clinicians are dependent on their individual judgement and decision making, particularly in situations where it is not easy to decide either due to high stakes, limited evidence base or limited resources in a low- and middle-income country (LMIC). No other field of medicine has witnessed so rapid a development and trying out of novel treatment strategies as that of oncology.  At the same time, most of the latest innovations are late to reach LMICs where the maximum cancer burden resides. This is largely due to economic factors. The current special issue on ‘psycho-oncology’ published by ecancermedicalscience would like to highlight some of the existing gaps in cancer care and showcase some of the work that has been done on the topic from around the world.

One paper from India discusses the ethical issues of cancer care in a resource poor setting (Ghose 2019). The authors bring out the various ethical dilemmas in planning and cancer care delivery. The article places special emphasis on women’s cancer in low- and middle-income countries but also touches on various other cancers. Patient engagement has been emphasized by the patient-centered approach that boosts the involvement of patients in the decision-making process on their care, promoting a shared decision between doctor and patient. The patient centered approach is one of the touchstones of patient empowerment in cancer care. Enablers of and barriers to patient empowerment were studied by Bailo 2019. According to Barry (Barry 2012, p.781), shared decision making is defined as a process where “the clinician offers options and describes their risks and benefits, and the patient expresses his or her preferences and values. Each participant is thus armed with a better understanding of the relevant factors and shares responsibility in the decision about how to proceed”.

However, it is important to acknowledge at this point that even before this choice is offered, the thought process and heuristics of cancer clinicians need to be explored. The variability of decision making may be related to a variety of factors. Doctors often have to work and deal with evolving situations with poor predictability, have access to limited and ambiguous information and as a consequence have to make an offer of a treatment based on probabilistic reasoning. In addition, perceived utilities and values around decision making are affected by subjective past experiences, beliefs, and interpersonal contexts (Pravettoni et al, 2016).

In clinical practice, cancer patients are often expected to understand the rationale behind complex and critical treatment steps, for example, understanding hazards associated with each treatment, short-and long-term side-effects, understanding screening and diagnostic tests, assessing a wide variety of the treatment options with many outcomes, and where sometimes benefits and risks are overlapping. The current issue reports a couple of studies on decision making (Datta 2019, Mazzocco 2019). In one of them (Datta et al 2019) decision making in oncology has been studied using a mixed method design using case vignettes and in-depth interviewing and the other paper reviewed the role of emotions in decision making (Mazzocco 2019). Mazzocco and colleagues highlighted how emotion is not always a roadblock to achieving a shared decision, but it could help to better comprehend the individual world of the patient.

Another key matter related to cancer prevention and health policy concerns the adoption of health risk behaviors in young non-clinical populations. An article explores tobacco initiation in youth in India and juxtaposes the findings against relevant health policy analysis (Ghose 2019a).

A challenge in shared decision-making in cancer is handling uncertainty between the patient, his or her family member and the doctor as for certain patients, in spite of the right decisions, there may be unexpected outcomes. There are different sources of uncertainty in medicine: technical (it is not always possible to have adequate information to forecast prognosis or the real outcome of treatments), personal (arises from doctor–patient relationship) and conceptual (arises from ineffectiveness to integrate preferences of the patient in medical decision) (Moumjid et al, 2007). Communicating this uncertainty at the very beginning is probably better than facing it as a surprise later on.  The current issue has tried to address the psychosocial and communication training required for practicing paediatric oncology in a paper on training in paediatric psycho-oncology (Datta et al 2019a). The paper sensitizes clinicians about common psychiatric morbidities in children with cancer, the threshold for referrals to specialist teams, burnout in paediatric oncology and the handling of families of children with cancer, amongst other topics.

For those who recover from cancer, there may be problems in adjusting to life in the medium and longer term and this topic is explored by Oliveri 2019 in the special issue. All the above highlights the importance of studying the social, psychological and cognitive aspects of medicine. Also included in the special issue is a paper that speaks about the methods of studying the sociological aspects of cancer (Caduff 2019).

Future directions and new challenges in cancer care

Cancer care encompasses an extended series of complex decisions involving doctors and patients and is strongly influenced not only by the health status and psychological wellbeing of patients, but also by health systems and policies. Considering this, the assessment and analysis of the “inner space of the patient and the impact of it on choice” should be a priority for doctors, and all healthcare professionals. Although patient involvement and shared decision-making were advocated by international institutions and patient groups several years ago, they are yet to be adopted fully in mainstream oncology (Pravettoni et al, 2016). Recent research has opened newer areas that may be further explored. Understanding how psychological factors, such as emotions, felt needs, and personal values influence health behaviors and treatment decisions will help us to implement health programs and interventions. It will likely also identify the best strategies to achieve optimum outcomes for cancer patients. Various tools and decision aids may be useful in engaging the patient further. In the times to come, it may demarcate a modern ethical framework for cancer care and also usher in an era of a more balanced cancer care model that relies not only on the existing medical model but also on other social aspects of health and patient choice, reducing dissatisfaction among patients. This is particularly important in the milieu of escalating health care costs that the majority of the world’s population face today.

Conflicts of interest

The authors do not have any conflict of interest to declare.

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