|Ahead of print
Thinking about the individual in the midst of cancer
Department of Liberal Arts, Indian Institute of Technology Hyderabad, Kandi, Sangareddy District, Telangana, India
Department of Liberal Arts, Indian Institute of Technology Hyderabad, Kandi, Sangareddy District, Telangana
Source of Support: None, Conflict of Interest: None
Keywords: Oncologists, patient empowerment, psycho-oncology, psychological well-being, self-care
The incidence of non-communicable diseases in India is on an alarming rise accounting for 53%, or 58, 68,800, deaths in the country. In response to these staggering statistics, the Indian government as well as international agencies such as the WHO, Bill and Melinda Gates Foundation, and IMPRINT Healthcare focus on improving patients' help-seeking experience through a variety of methods and mechanisms. Notwithstanding each agency's vantage point, there is little or insufficient emphasis on the psychological factors involved in the health-and-illness continuum such as symptom identification, awareness about health and healthy habits, decision-making processes, and adherence to the doctor recommendations. This is especially relevant in a disease like cancer which places a huge demand on the patient's mental resources right from the time of symptom identification to the point of reaching the end-of-life. Yet, it is surprising how research on cancer in India does not pay nearly half the attention to the patient experience, views or wishes as it does in the medical/technical aspects of care.
I will dive straight into sharing two key psychological aspects of cancer I come across several times in my experience working as a psycho-oncology professional. The foremost and most compelling feature of the cancer encounter is the sheer volume of patients who remain in the dark about their diagnosis, prognosis, treatment, its side-effects and the self-care they need to engage in order to combat the disease. Inherent in the cancer journey is the negligible emphasis on improving the patient's capacity to make decisions. This is, in fact, a reflection of our prevailing family-centric way of life where the family is often the key decision-maker in the patient's treatment, resulting in many preferring diagnosis nondisclosure for a variety of reasons such as protecting the patient's emotional well-being, not knowing how to disclose and the patient's personality was not favorable to disclosure. Often, oncologists initially comply with this cultural practice (i.e., family's requests for nondisclosure), sometimes by even asking the patient to wait outside the consultation room in order to first speak with the family. Our preliminary research suggests that this delay in open, honest communication centered mainly on the oncologists' desire to understand the family dynamics (e.g., what is the patient's role/place in the family structure) before gently discussing the potential benefits of partial or full disclosure with the family. In this way, the complicated power and culture dynamics of the care-seeker (patient) and care-providers (particularly family) is expressed where access to information and decision-making hierarchies are nested within the larger fabric of collectivism. Consequently, 54% of Indian patients are unaware of their true cancer diagnosis, as opposed to other Asian countries which range between 36%-42%., In parts of Asia, there are communication skills training programmes for oncologists which addressed the issue of nondisclosure. For example, in Japan psycho-oncologists successfully developed a socio-culturally relevant communication skills programme for oncologists which reported positive patient outcomes such as better adherence, decreased psychological distress, and increased trust and satisfaction with their care provider. Following suit, psycho-oncologists in Taiwan and China tested, adapted and are in the process of rolling out their own communication skills programmes for oncologists and nurses., Contrasting these developments in cancer communication, our psycho-oncology research revealed that Indian patients preferred paternalism in the medical setting, believing the oncologist to be the authority on the disease, thus the natural medical decision-maker. These findings emphasize the persistent nature of paternalism to the extent that patients internalized and rationalized physicians' decisional power. However, in my experience, this can be problematic for all the stakeholders involved in the cancer care trajectory since, in the end, it is the patient who needs to be sufficiently aware of the seriousness of their health condition, thus allowing them the opportunity to actively partake in their own care.
The most common reason for excluding the patient in the decision-making process is their illiteracy or low levels of formal education. Interestingly, research evidences that the link between formal education and health literacy is mediated by several socio-demographic variables such as income, geographical location and so on. In fact, (lack of) education in its traditional form is not a difficult barrier to overcome. Sometimes, having higher levels of education may be a barrier in itself! I have frequently heard my oncology colleagues say that illiterate patients were more aware of their cancer and the required care practices, attended medical check-ups regularly, and complied with their overall care recommendations than their literate counterparts. Hence, it is important to establish that (formal) literacy and cancer literacy can be mutually exclusive, such that having the former is not a prerequisite to gaining the latter. Cancer literacy refers to an individual's ability to consume, make sense of, and act on certain cancer-related information. It can be a great tool for patient (and community) empowerment, as is the case with any kind of knowledge. Therefore, public health programmes, hospitals, primary care centers and so on need to concentrate on culturally sensitive and innovative methods to package and deliver cancer information in India. For example, it may be useful to engage healthcare providers in the information delivery both to patients but also at a community level as this can aid in increasing the trust and credibility of the information among the latter. Further, the healthcare provider will be able to help patients interpret and adapt this information to their individual preferences and lifestyles in a constructive and conducive manner. However, successful delivery of a healthcare provider assisted cancer information programme hinges on their communication skills, emotional intelligence, and patience.
This brings me to the second and striking aspect of cancer, which is oncologist burnout. Of all the specialty physicians I talk to, I've noticed oncologists are the most empathic and rarely admit to stress and almost never to burnout. Possibly because most oncologists relied on buffering factors such as a supportive family, friendly work colleagues and the all-in-one workplace assistant. However, I had a niggling feeling that maybe these resources are insufficient or oncologists are not harnessing their supportive network effectively to aid in coping with their work demands. Many oncologists in India see greater than 50 patients a day, deal with an unstructured workplace, adapt to a unique socio-cultural environment which is sometimes at odds with their training and ethics, and have to remember each patients' needs and family structure. For example, we interviewed oncologists about how they handle nondisclosure of a cancer diagnosis. As described above, they revealed that they take a step-by-step, culturally nuanced approach where they first seek to locate the patient within the family, understand the family needs and beliefs, negotiate the family's and patient's wishes, and shape each of their patient-family encounters based on these interactions. Somewhere in the midst of these consultations, the oncologist will communicate their thoughts and beliefs. Therefore, empathy is not exhibited solely at the workplace, but it is an ongoing personal and professional experience and often internalized. When I asked oncologists whether they feel stressed by this effort – to be engaged all the time – they brushed the stress aside, talking of how they compartmentalized their feelings at work and home, and that they were used to it. When I asked them about sleep quality, time spent with family, how they express empathy to themselves, and whether they took vacation time – well, they struggled with these questions. I would like to pause here and deliberate on the importance of self-compassion/self-care and how closely it is associated with one's ability to effectively deliver healthcare – you need to experience and express loving-kindness to yourself before you can share it with another. In the case of oncology, not engaging in self-care can eventually lead to the oncologist becoming burned out. Indeed, worldwide research highlights the high levels of stress and burnout among doctors, bringing to the fore the importance of acknowledging and identifying early symptoms of burnout.
So how do we help doctors engage in self-care before they spiral into burnout? Through a variety of techniques ranging from narrative therapy, diary keeping, time management, mindfulness, and, my favorite, self-compassion exercises. Healthcare professionals with whom I conducted self-compassion activities always felt moved at the end of the session and felt the long-lasting effects of this self-care technique. Supporting this, recent research shows that loving-kindness interventions are linked to reduction of levels of stress and improved the effectiveness of practice among doctors. However, it's difficult to convince doctors (and management!) about the importance of self-compassion. You see, loving oneself is not acceptable (or lucrative) both from in the socio-cultural sense, but also from the professional front. That said, I am always excited that there are a subset of medical institutions and individuals who continue to push the self-compassion agenda in India.
To conclude, in the gamut of cancer care delivery in a country as vast and diverse as India, there are opportunities to forget that there is an individual (patient/carer/oncologist) who brings their private, personal world into the cancer setting. Cancer research and practice in India will greatly benefit from widening its scope to include this individual's perceptions, thoughts, needs, and motivations while making medical decisions which directly or indirectly impact them.
The author would like to thank all the patients, carers and oncologists she interviewed during the course of her research. She would like to particularly thank Prof. Paul Norman (PhD supervisor; University of Sheffield, UK), Prof. Phyllis Butow (small project supervisor during the PhD and now research collaborator; University of Sydney, Australia), IIT Hyderabad, and her research group at IIT Hyderabad who are all a huge part of her journey as a psycho-oncology researcher.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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