|Ahead of print
Psycho-oncology: My chosen journey
Indian Institute of Technology, Hyderabad, Telangana, India
|Date of Submission||30-Oct-2019|
|Date of Decision||31-Oct-2019|
|Date of Acceptance||28-Mar-2020|
|Date of Web Publication||22-Jun-2020|
Indian Institute of Technology, Hyderabad, Telangana
Source of Support: None, Conflict of Interest: None
Before choosing psycho-oncology, there was a juncture in my life when I had to select my specialization for further education. It was overwhelming to choose one from all the areas available at that time and be solely responsible for this decision as it had a bearing on not just me, but also on my family. In 2013 (when I decided on my area of specialization), psycho-oncology was a new field. With just a belief to hold onto, that one day psycho-oncology would be widespread and welcomed in Indian cancer care, I pursued this field with dedication and passion. Despite knowing the risk of choosing a career of a barely trodden path, I took the plunge because I believed in its need and that I could contribute to this field meaningfully. Persistent efforts to integrate psycho-oncology into mainstream oncology are being made by psychologists, policymakers, oncologists, social workers and palliative care professionals and I will continuously strive to add my bit to this field. Cancer, as is commonly known, is an illness of the patient, as well as the family. Cancer impacts patients, caretakers, and oncologists. I observed that factors such as culture, age, caretakers beliefs, their perceptions about the illness, society, and the stigma associated with the illness are some of the barriers to truthful disclosure. This is an area within psycho-oncology that interests me and I have dedicated the past few years of my research to knowing it in depth. In this narration, I share with you an encounter with a patient which propelled me certainly and went deeply into psycho-oncology.
Keywords: Cancer patients, end-of-life care, oncology, psychology, psycho-oncology
| » Psycho-Oncology: a Journey of Making Choices|| |
As a part of my Master's in Health Psychology, undergoing clinical internships was compulsory as this helps in preparing us to provide appropriate psychological support to patients undergoing various medical treatments. Each of us had to choose our wards, so I chose the surgical intensive care unit. One is required to take several precautions while entering these wards (sanitization, hospital safety gowns, and so on) and after undergoing these safety measures on my very first day, I entered the unit only to have my olfactory senses unpleasantly accosted! Adding to this were the surprised looks from the nurses and orderlies as they did not understand why and what was I doing in their unit. Indeed, the initial days of my attempts to integrate mental health with physical health in the surgical intensive unit were met with quite some cynicism. On my first day, I walked through this unit and saw a patient without a caretaker and upon further inquiry was informed by the nurse that his family had employed a full-time caretaker. This increased my curiosity since it was unusual for patients not to have family members taking care of them.
Reviewing his medical history, I learned that Mr. S was diagnosed as stage 4 liver cancer with comorbidities. He had undergone a surgery and was receiving chemotherapy. I approached him with apprehension and enquired how he was doing. He seemed preoccupied and responded, “I am fine.” I felt I was intruding his space and turned to leave when he called me and offered me a seat. He went onto say, “Sorry if I sounded rude. I have never seen you around and you do not seem like a doctor. Is there something you wanted to ask or tell me?”, I told him about the purpose of my visit. He was courteous and generous with his time. I learned a lot about Mr. S during our conversation such as his interests, his cancer story and how he was presently feeling. As time closed in, I got up to leave, and to my pleasant surprise, he asked me if I would come back the next day. What warmed me the most was that I had succeeded in reaching out to him. Consequently, I spent time with him every day for the next three months of my internship at the hospital.
He introduced me to other patients who were being treated alongside him, “Being in the hospital long enough, just lying on the bed all day, you end up making friends,” he would say smilingly. We spoke about his family, his postings as an army officer, places he traveled, and how he missed his family. His primary concern was that he had never indulged in any health risk behaviors and yet was diagnosed with cancer. I inquired how Mr. S felt about the treatment, its side effects, and impact on his life. He said, “If I were you, I would not worry too much about it and live my life today.” His attitude and perceptions towards the illness provided me a clue into his levels of resilience and coping strategies of acceptance and information-seeking. However, he did break down while talking about his parents, saying he wished he had spent more time with them. These conversations gave me a glimpse into his desires, hopes, and regrets, and how cancer was impacting his psychological well-being. During these interactions, I was able to perceive and interpret his mental disposition toward the illness and its impact using my skills of open-ended questioning, paraphrasing, empathic questioning, and active listening.
After 3 months, he was being discharged from the hospital as he opted to continue his treatment near to his home. Before Mr. S bid me farewell, in his usual calm tone he asked me about my future plans. I said that I was yet to choose a stream within health psychology and he replied, “It is just my opinion, but I think you are a perfect fit into oncology.” He added, “In this ward with nothing but beeping machines, white curtains, and hazy faces of doctors…I looked forward to meet you every day. That was the only time I felt normal, you never treated me merely as a patient…to you I was a person…and not just an illness. You were the little ray of hope I had in this closed room with no sunlight.” Listening to Mr. S, I was overwhelmed and for several days his words resonated within me.
When I revealed my decision to pursue psycho-oncology to my friends, well, I got many stares and then painfully protracted silence. The worst was yet to come! At home, I shared my final career choice to my family. My grandmother took the first dig at me and she asked, “Will you wash your hair every day after you come from the hospital because patients are constantly passing away in cancer hospitals? It is a part of our culture and you have to visit the temple to perform some rituals to cleanse yourself. Will you do that?” The question disguised the demand! I looked to my parents for support, but to my disappointment, they remained silent. Concerns from my near and dear kept pouring in: “Why would you want to see so much pain every day? How will you deal with death? It's not a pretty sight in the cancer wards. Who will marry a person dealing with sick people every day? Finding a groom will be difficult. How would I describe your profession to anyone? You are a girl so why don't you take up counseling and not psycho-oncology? Is your profession even recognized? Do you even have a future in it?”
It was not comfortable dealing with these questions and doubts; I felt helpless and struggled to explain my motivations for this career path. During those days when I continued my internship in the hospital, I found my solace and the right response to my worried family and friends. The oncologist who had treated Mr. S recognized me in the hallway and called out my name. He said, “Looks like you made quite a difference to Mr. S! He ensured that I remembered your name and to tell you that you would not regret it if you took up this field of specialization. So have you made your decision?”, I said, “Yes sir,” and that moment was when I knew that I had paved my path for this journey. The realization that I made such a big impact in a patient's life told me that there was scope to contribute meaningfully to the lives of other patients too. So, in reality, 8 years ago in the basement of a hospital a single individual changed the course of my life.
Working alongside patients with cancer, their carers, and oncologists, I realized that there is not just a physical aspect but also a 360 degrees holistic aspect to the illness. An individual is diagnosed with cancer but the impact is on a variety of factors which influence their mental health. Factors such as family's well-being, finances, societal response to a cancer patient, prior experiences with cancer, patient carer stigma, age, gender–all these significantly have an effect on them before, during and after diagnosis. As a result, the unmet needs of caretakers and oncologists exist. Each of the stakeholders tries to support the patient and themselves as well, which might not be possible at all times.
Over the years of working within the field of psycho-oncology, I observed that often the desired ease of communication was not accomplished by all three main stakeholders (i.e., patients, caretakers, and oncologists). This had huge effects on their psychological health, frequently leading to stress, distress, and dissatisfaction. I believe psycho-oncologists act as facilitators between caretakers and oncologists by providing them with the skills to communicate effectively and efficiently. Indeed, the role of psycho-oncologists is vast, ranging from explaining cancer causality to preparing patients for amputations, being empathically present in the patient and carers' lives, supporting oncologists in order to avoid burnout, providing psycho-education for patients, guiding carers through ways in which they can manage their emotions, facilitating medical decision-making, and dealing with death and bereavement. I employ a variety of psychological techniques for patients and carers depending on their psychological needs. For example, when a carer lost their parent to cancer, I introduced the empty chair technique of Gestalt Psychotherapy in order to help them deal with their bereavement. This technique helped alleviate their grief and distress. In some patients progressive muscle relaxation techniques were also found to be helpful while undergoing chemotherapy and radiation. Another example would be when I used play therapy for a child with acute lymphoblastic leukemia who was struggling with reintegrating herself back to school after the initial cancer treatment. In this way, I was fortunate to work in hospital settings which were supportive of psychological care services, and with patients and caretakers who warmly welcomed my presence.
Considering Indian cancer patients, there are some tough challenges which I faced while working with caretakers and oncologists especially the question of “to tell or not to tell” a patient about their diagnosis and prognosis. I encountered a variety of concerns from carers and oncologists such as “How do I know if the patient wants to know the truth?” “If we tell them, how much should I tell?” “I am a doctor, I should be disclosing all this information to the patient yet I need to balance the family's wishes,” “Does, not informing the patient, make me a bad person,” “My religion/culture doesn't approve of this treatment”. These questions are what drove me to pursue a PhD in psycho-oncology through which I am unpacking the lived experiences of prognosis disclosure and nondisclosure from the perspectives of Indian patients, caretakers, and oncologists.
Over my years of work in psycho-oncology, I am constantly aware that this field requires not just empathy, but advanced empathy, benevolence, nonmaleficence, patience, and emotional stability on the part of the psychologist. It is not a field that everyone can handle because we lose patients who we become close to and yet we have to turn up the next day with a balanced mind to take care of the patients awaiting us. Yet, I am fueled and passionate about this field as I get to help them cope with their illness, communicate better with their families, and share a satisfying relationship with their treating oncologist.
Now, reaching the final year of my Ph.D., my family and friends ask me if I think this career path was and will be worth it. I simply tell them that I am grateful every day for this opportunity of being able to be a part of the patient's life and I do not regret choosing this field. Psycho-oncology has made me a better person, broadened my perspectives and gave me a strong purpose in life to pursue and persevere.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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Gupta B, Kumari M, Kaur T. Effectiveness of progressive muscle relaxation technique on physical symptoms among patients receiving chemotherapy. Nurs Midwifery Res J 2016;12:33-40.
Chari U, Hirisave U, Appaji L. Exploring play therapy in pediatric oncology: A preliminary endeavour. Indian J Pediatr 2013;80:303-8.