Lessons of being a patient -personal thoughts about psycho –oncology in India
from Mens Sana Monographs(2016) 16:171 -186.
Psycho-oncology is a well-established field in the developed countries and ‘distress’ is recognised as the sixth vital sign in the care of persons diagnosed with cancer. However, centres in India caring for cancer do not make psycho-social aspects an essential part of their care programmes. The present narrative presents the personal journey of the author, reviews the situation of psycho-oncology in India and presents a three-part agenda for action.
At the of 66 years and after over 50 years of life as a medical professional (I retired as Professor of Psychiatry in 2003), I thought I had experienced life in all its variety. But there was a surprise for me, a life lesson in caring for the sick waiting to hit me. In August 2013, I was diagnosed with colon cancer, which was followed by surgery and chemotherapy from Aug 2013 to March 2014.
Below is an account of the following aspects: (i) the psychological impact of the diagnosis of cancer on me and how I addressed the changes, especially focussing on the skills of being a psychiatrist; (ii) the current situation of psycho-oncology in the country; and (iii) an agenda for future work to address the psycho-social needs of persons diagnosed with cancer.
As a psychiatrist, I had worked with persons diagnosed with cancer, especially while working at PGI, Chandigarh, India (1972-1982). I was involved in the care of a number of them providing them with psychological/emotional support through their journey (Ayyagari et al,1979 (2) ). I still have vivid memories of caring about 40 years back for a doctor diagnosed with leukaemia: she was referred to me with unexplained thigh pain, for which the medical team could not find a physical cause. I stayed with the patient till her death and understood her concerns for her 10 years old son as she faced death. It is emotional, even after four decades to recall the experience; and it brings tears to my eyes to remember that she called for me to say good-bye before lapsing into coma.
In August 2013, when out of the blue I was diagnosed with Stage 3 colon cancer, I thought I had the reserves and the skills to handle the condition. How wrong I was! The diagnosis of cancer hit me like a tsunami, wiping out everything of the past in a swift quick move. I recall my first reaction to the diagnosis, offered very routinely by my doctor, during the colonoscopy procedure, ‘You have definite cancer…You must have immediate surgery’. At that moment of diagnosis, I thought my life had come to an end. Interestingly, I had another thought at the same time, ‘I can start my life fresh!’
During the surgery and the six months of chemotherapy, and one year of post treatment phase(at the time of writing the article), I faced seven challenges (See Table 1) –
7 Challenges of a diagnosis of Cancer
- Understanding the illness
- Understanding what would its treatment means
- How would my personal life change?
- How would my family life be affected?
- How would my professional life change?
- What will be my social life?
- How to make sense of the uncertainty of future life and spiritual issues?
I feel these 7 challenges are part of all the concern of all sick people, with varying intensity and duration depending on the age at which illness occurs, the gender of the person, education, nature of illness, economic situation, the availability of treatment, and the professional and family/social situation of the individual. The following is an account of my journey of last 18 months and the lessons I learnt as a patient.
The process of colonoscopy is not the best of experiences. But to go into thinking of the embarrassment of going through the procedure and the come out of it with a diagnosis of cancer is not the best way to hear about the diagnosis. Was the gastroenterologist’s announcement of his discovery of a cancer growth during the colonoscopy the best way to share such a life changing and momentous information? I guess for him it was one more procedure and one more successful one with a ‘positive’ result. For me it was anything but so.
Following surgery, which was done three days later, the biopsy report came in a week. I was gradually recovering from the surgery, having put to use all the information I had of advising patients in similar situations, especially the first urine discharge, the first bowel movement. I was looking forward to an end to the uncertainties. The oncologist team came into my room, with me on the bed, the senior consultant and the junior consultant standing next to my bed (I thought, ‘Would it take too much time to sit and talk’), and with an attitude of let us get over the process quickly told me, “ It is not that you are going to die, we need to start you on chemotherapy”. With no time to process the information, the team left, with the advice, “Get in touch with us after the wound heals, we will discuss the details and options”. In one week, from an active professional, I had become a passive recipient of medical interventions, about which I knew so little and, much more importantly, had so little control over.
Next came chemotherapy, one of the most challenging treatments in medicine, probably only a little better than having to undergo an emergency amputation. The challenge was that from a thinking and feeling person, I was reduced to a mass of muscles, nerves and blood cells. For the next six months, everything was how my body accepted the medicines, what was my energy level (which remained mostly very low), the level of white cells, platelets, the body pains along with food and activity restrictions. From a ‘mental’ person I was reduced to a ‘physical’ person. The transformation was all the more significant for me as I, sadly, had given too little attention to my physical self during the last 6 decades of life.
There were so many things happening to me – one was the introduction of a chemoport to facilitate the chemotherapy (this is a great advance and helped me avoid all the complications of venous thrombosis etc). The fatigue, the nausea and need to drinks litres and litres of fluid were all new to me. I insisted on seeing someone having a chemotherapy, visiting the chemo-centre and talking to another patient undergoing a similar procedure. These exposures should have occurred as a routine, but it was not so. The treating team thought nothing of introducing me to the new procedures and processes. Could anything have been done? I think I would have done better to have more information.
The chemotherapy sessions were not as much a horror as I had heard about and read about. The angelic nursing team were efficient, courteous and the medical consultants were always with me and could be reached easily.
What was the battle about?
As my body was battling the cancer, or the chemotherapy, at times it was not clear what was the battle about, who was the attacker and who the attacked. There were bigger challenges. My personal life came to a grinding halt. The year was important, being the Golden Jubilee of my completing schooling (July 2013), and Golden Jubilee of the postgraduate centre where I trained as a psychiatrist (September 2013), Golden Jubilee of joining the medical school (Aug 2014). All passed by with I staying at home. I could not meet any of my colleagues who had gathered on these occasions. There was no clinical work, no meetings, and no travel. I had to stop travelling to Bhopal, something I did for a week every month to work with the disaster population there. It was a year of losses.
The challenge that my wife and family faced was equally daunting. The extra efforts to prepare fresh food for each meal, drive me to hospital for blood tests, chemotherapy sessions, besides single handedly running the home was the burden on my wife. Besides worrying and coming to terms with her own fears, she had to handle my emotional lability and irritability, and the ups and downs of concomitant medical condition like falling platelets and an intervening herpes infection half-way into the chemotherapy!
There was no organised psychological help for me or my wife, as the medical team was battling the cancer and not our fears and problems. There was no social worker, counsellor or self-help group in this top class tertiary cancer care centre!
Professional and Social Life
My professional life took a nose-dive, and it looked like I would have to rediscover my professional work with limited travel and lower levels of energy. It’s lucky I am 67 and feel I have given my best and therefore have limited desires for professional achievements.
Social life was equally challenging. My wife and I, contrary to the routine practice of keeping the illness secret, took the decision to share the information with all our family members, friends, colleagues and well-wishers. Part of it was guided by the need to stop clinical work, (and transferring patients under my care to colleagues) and stop my monthly travel to Bhopal. However, equally important was our desire to draw on the support of our social network.
Looking back, this was the best thing we did. Nearly everyone (yes, a few friends broke their long standing friendships – probably they were phobic to cancer) supported us in a wide variety of ways. The phone calls, emails, personal visits, books sent were all very valuable – they helped establish a continuity in our connectivity and helped us find emotional energy to go on during periods of despair and distress. I wish to thank my friends for this valuable and thoughtful support. Their support was valuable to both of us.
Of all the challenges, the most difficult was to confront the new reality of ‘living with uncertainity’. There were so many issues related to finding meaning in the suffering, thinking of the end of life and a bigger issue of the meaning of life. Out of sheer necessity, I entered an area that I had not given much importance to in all the 7 decades, namely the spiritual aspects of human existence. To be frank, this has been the most valuable benefit of the illness and I can say I am at greater peace with myself in this area due to the illness.
Psychiatric Skills in Self-care
One of the frequent questions asked is, “How did being a psychiatrist help you to face the diagnosis and treatment of cancer?” Yes, my profession helped to a large extent. Let me reflect on a few issues.
Firstly, I could understand the emotional turmoil better and avoid making a fool of myself when I had emotional lability by taking precautions and sharing my feelings with my wife. I also avoided talking to people over the phone, as I would break down crying and the person on the other side could not make sense of my mood.
Secondly, recognising the need for information to counteract the uncertainties, I read enormously to understand the medical information about cancer, the treatment procedures, life experiences of others in similar situations and books on spirituality. They were all very helpful. The most important books in this area start with the book ‘The Emperor of All Maladies’ (Mukharjee, 2011, (13) ), the others being personal account of oncologists( Holland and Lewis, 2001 (8) , Holland et al., 2010 (9) , Bapsy, 2011 (3) , Nayak, 2011 (14) , Srivatsava, 2014 (17) ).
Thirdly, knowing the value of ‘prescription by pen’ I kept regular notes of my experiences. I wrote down my experiences and this was helpful. (Scientific American, 2014 (15) ).
Fourthly, as shared earlier, I recognised the loneliness of the illness and made it a point to be in touch with my social supports and utilised them to the full. I was lucky to have such willing and supportive network of family, friends and well-wishers. Many of them made the effort to come and share time with me. These interactions were valuable to me to ‘rebuild’ myself at a time when I felt totally worthless and did not see a future. A well-wisher, by dwelling on the rich reservoir of emotions and past relationship, is best suited to be a source of support.
Fifthly, I kept up my physical activity during all phases of the treatment. I picked up the habit of walking in the house and physical activity built up both my physical strength and improved my mood.
Sixthly, I read books on spirituality which helped me view life beyond the self.
Learnings from the Illness
What has it been like to experience the illness, the treatment, and the living with uncertainties of the future? I have gained a better understanding of what it means to be a patient, what are the needs of individuals seeking care and their family’s needs. I also know I have to organise to meet these multiple needs as a team leader. I am also richer for having examined many new facets of my life, especially spiritual. My marriage is stronger for the journey through fire. I am told I have mellowed, become less impatient, become less hurried, less critical and more accepting of others.
I want to recognise the excellent medical and surgical care I received. The observations below are made to recognise the areas where there is need for further additions and improvement.
I began by saying that I want to share the lessons learnt from the illness experience – being on the other side of the medical bed. Being a patient has been a valuable lesson, and I wish I had been exposed to the same at an earlier phase of my medical life, so that I could have been a better doctor. As a medical carer doctors/surgeons etc play an important role in the recovery of their patients. I now know that all illnesses are not only medical events but personal crises and involve more personal challenges than taking medicines and getting operated. I also know that a patient is a human being with complex personal, family, social, spiritual lives, which require attention as much as does the body.
Lastly, the medical care team has to be sensitive to these needs for information, support, guidance and acceptance and should organise medical services to meet all such needs. This does not necessarily mean more time by the overburdened medical professionals. They can use information technology, survivors, families of survivors and non-physician personnel to meet these needs. Such an effort is not only beneficial to better clinical outcomes but will make the medical illness a source of growth and development of the individual.
Indian Situation regarding Psycho-oncology:
Cancer is recognised as an important public health problem in India (Mallath et al., 2014 (11)). Psychosocial care can be practiced at three levels, namely (i) at the level of the individual/family; (ii) by care providers like nurses, doctors; and (iii) by mental health specialists like psychiatrists, clinical psychologists, psychiatric social workers and occupational therapists (consultation-liaison care). ‘Psycho-oncology’ is in an early phase of development in India (Chaturvedi, 2012 (6) , Abhishekh et al., 2014 (1) ). In centres where organised psychosocial care is practiced, it is mainly one of the consultation type. Routine integration of the psychosocial care of all patients is missing. In addition, in India, we have differences in the way we look at our personal life e.g. meaning of illness, suffering, goals of life etc; our family life is different e.g. supportive, involved, interfering, crisis support etc; the social groups function differently e.g. support, stigma; and we have a range of religions with variations in ways of looking at illness and suffering; besides of course the issues of the economics of medical care and limited availability of cancer care in the public sector. On the positive side, the Indian focus on spirituality in day-to-day life, availability of family, interventions like yoga, prayer and meditation, makes it relatively easy to integrate psychosocial care.
For reasons of variations of the psychosocial needs of Indian patients diagnosed with cancer and the limited professional resources, there is a need for the development of Indian approaches to address the psychosocial needs of individuals and families (Chaturvedi, 2012(6)).
The way forward -Three steps needed
My experience of encounter with cancer has brought home to me both the importance of psychosocial care for persons with a diagnosis of cancer and their families and the current lack of this service. To address the needs there is need for three levels of intervention [Fig 1]:
1) Firstly, to collate the personal experiences of persons with a diagnosis of cancer and of their families, to understand their psychosocial needs as well as methods that have worked in the Indian context;
2) Secondly, bring to persons with a diagnosis of cancer and to their families, a range of self-care measures for meeting their different emotional needs during the diagnosis, treatment and survivor periods;
3) Thirdly, to advocate for making psychosocial care an essential and integral part of care for persons with a diagnosis of cancer and for their families.
The diagnosis of and taking treatment for cancer is a life changing experience. Life does not remain the same for an individual and his/her family following the diagnosis. The journey is marked, as described by Holland, psychiatrist of Sloane Kettering Hospital, New York, as one of ‘Living with Hope: Coping with Uncertainty’ (Holland and Lewis, 2001 (8) ).
Each individual/family respond to the illness in his/its own way. There are enormous amount of books of personal experiences from Europe and North America. There are only a handful of books of ‘living with cancer’ from India (Barthakur, 2006 (5) , Kumar 2011 (10) , Bhat and Bhat, 2013 (4) , Moorjani, 2013 (13) , Singh, 2013 (16) , Vattam, 2014 (18) ). It is important to understand the experience of living with cancer diagnosis, its treatment and its recovery from the Indian perspective. This is important as we have different views to life, our family functioning is different, there is limited availability of state social supports, the medical care is largely one of out of pocket payment and social attitudes to cancer vary in different communities.
It is towards this goal that efforts should be directed to bring together the experiences of individuals and families who are diagnosed/ treated/ living with cancer. An outline for preparing these narratives could include the following aspects of their life (Table2).
- Description of personal life and family life
- First recognition of the symptoms of cancer and process of diagnosis
- Reaction of different family members to cancer diagnosis
- First help sought – traditional care, medical person, other
- Experiences of getting initial help
- Specific treatment experiences – surgery, chemotherapy, radiotherapy
- How has the illness/treatment impacted personal life, family life, professional life, social life and spiritual life?
- During the period of diagnosis and treatment of cancer, what have been the satisfying experiences?
- During the period of diagnosis and treatment of cancer, what have been the frustrating experiences?
- What have been the sources of support during the illness/treatment period? What has been the impact of the illness on the family: health, finances, social life, cohesion, other aspects.
- What are the ongoing concerns ?
- What are the areas of assistance required by the patient/family?
- Other experiences worth sharing
There are a number of measures that can be undertaken by the persons diagnosed with cancer and their families to address these needs (Figure 2)
The collation of personal narratives and literature search will lead to these measures being available to all persons diagnosed with cancer and to their families as an integral part of cancer care. The initiative of HCG Hospitals in June 2014 to bring together the survival stories of persons diagnosed with cancer, to which more than 130 patients contributed by their 60 second videos illustrates the range of measures used by individuals (faith in God, yoga, meditation, alternative therapies, support of family, friends, reading of books, music, sharing of feelings, physical activity, spiritual support etc). (HCG HOSPITALS –Selfie competion, June 2014,7 )
Empowering people with psychological skills
Using non-pharmacological interventions for promoting quality of life and happiness is available from a recent Scientific American publication, Breaking Bad (Habits): Finding Happiness through Change (Scientific American, 2014, (15) ). Its essential message is that self-improvement is a lifelong quest. The compilation opens with Change Is in the Mind, which looks at how our thought processes can either help or hinder these efforts. Elaine Fox writes in The Essence of Optimism that negative thinking causes us undue stress and that by reversing this habit, we could beat depression, anxiety and substance use disorders. Emily Anthes’ Six Ways to Boost Brainpower, informs us that the adult brain is far more malleable than we once thought, putting to bed the idea of being ‘too old to change,’ and gives practical advice on improving the brain’s performance. Wray Herbert’s article The Willpower Paradox addresses the contradictory notion that if we keep ourselves open to failing instead of willing ourselves not to fail, we are more likely to succeed. Articles on Mindfulness show how being fully present in the moment can make us happier. It includes the article Being in the Now by Amishi Jha. There are other articles on self-improvement, many of which involve focusing on the present. The final section concentrates on lasting personal change, whether that involves cutting back on drinking and smoking, losing and keep off weight, exercising more or keeping the romance alive with your partner or spouse. One of the most useful articles Prescription by pen describes the value of writing down negative feelings when going through difficult life experiences.
A similar effort in India to empower persons diagnosed with cancer could be a valuable contribution towards psychological care.
- Psychosocial care essential and integral
Psychosocial care is an essential and integral part of care for persons with a diagnosis of cancer and for their families. Studies all over the world, including studies from India, have found that 35-45% of cancer patients for outpatients [and higher rates for inpatients] and their families experience significant clinical distress (Chaturvedi, 2012, (6) , Abhishekh et al., 2014 (1) ). Distress has an important implication for the quality of life of ill persons and their families. The diagnosis of cancer not only changes the bodily function (due to illness and the treatment processes) but also the personal, professional, family, social and spiritual aspects of the individual.
“You have cancer.” These simple words come as a terrible shock. Life, as you know, changes in an instant and nothing is the same again. Panic and fear overwhelm you as you desperately pin your hopes on doctors and the medical treatment. (Mukharjee, 2011, 13) )
In most countries, cancer specialists have limited expertise and time, and are unlikely to screen all patients for distress and provide the needed psychosocial care. There are a large number of psychosocial interventions to decrease ‘distress’. Many of them can be taken up by the individual and family (listening, sharing of feelings, writing down experiences, reading of others’ experiences, relaxation, meditation, physical activity etc). There are other interventions like support groups and group therapy where ill individuals can help each other. Some other interventions can be delivered by non-specialist and specialist professionals (e.g. psychotherapy, cognitive behaviour therapy, art therapy, problem solving, family therapy, medicines). Spiritual support from religious leaders is an important component of psychosocial care. There is sufficient evidence to demonstrate the value of psychosocial care in (i) decreasing distress; (ii) limiting the occurrence of anxiety, depression, sleep disorders; (iii) improving quality of life; (iv) enhancing the acceptance of treatments; (v) minimising the use of pain relievers; (vi) adherence of life style changes like giving up smoking; and (vii) increasing survival period (Holland et al, 2010 (9) ).
An Agenda for Action
The following are the steps that need to be initiated to address the current situation:
Step 1: Documentation of personal narratives of individuals and families, about how the diagnosis and treatment of cancer is experienced by individuals in different social groups and economic strata and how cancer and its treatment impact the personal, professional, social, spiritual lives and the methods they use to address these needs;
Step 2: Development of simple, easy to use psychosocial tools for assessment of distress and for self-monitoring by the individuals and families, suitable for literate and non-literate persons and those from different social groups;
Step 3: Making the assessment of ‘distress’ and psychosocial needs an essential part of the care programmes (inclusion of care providers, setting up of self-help groups etc);
Step 4: Sharing of self-care skills with each individual diagnosed with cancer and dissemination of informal care skills to families and other care-givers;
Step 5: Evaluation of the interventions both for short-term and long-term outcomes;
Step 6: Professional training of all care providers – doctors, nurses etc to include the essentials of psychosocial care, towards an integrated and holistic care; and
Step 7: Mental health professionals to be providers of (i) specialised care, (ii) support to medical team, (iii) trainers of medical team, (iv) development of interventions and evaluation of interventions.
The SEVEN challenges are: (i) Understanding the illness; (ii) Understanding what would its treatment mean (cost and side effects); (iii) How would my personal life change? (iv) How would my family life be affected? (v) How would my professional life change? (vi) What will be my social life? And (vii) How to make sense of the uncertainty of future life and spiritual issues?
Development of psych-oncology in India would require attention to 7 areas
Step 1: Documentation of personal narratives of individuals and families, about how the diagnosis and treatment of cancer is experienced by individuals in different social groups and economic strata and how cancer and its treatment impact the personal, professional, social, spiritual lives and the methods they use to address these needs
Step 2: Development of simple, easy to use psychosocial tools for assessment of distress and for self-monitoring by the individuals and families, suitable for literate and non-literate persons and those from different social groups
Step 3: Making the assessment of ‘distress’ and psychosocial needs an essential part of the care programmes (inclusion of care providers, setting up of self-help groups etc)
Step 4: Sharing of self-care skills with each individual diagnosed with cancer and dissemination of informal care skills to families and other care givers
Step 5: Evaluation of the interventions both for short-term and long-term outcomes
Step 6: Professional training of all care providers – doctors, nurses etc to include the essentials of psychosocial care, so as to move towards an integrated and holistic care
Step 7: Mental health professionals to be providers of (i) specialised care, (ii) support to medical team, (iii) trainers of medical team, (iv) development of interventions and evaluation of interventions.
In conclusion, the diagnosis of cancer in individual is a challenging experience for the individual and his/her family. Major reorganisation of life has to be part of the treatment process. The care of individuals with cancer and their families will be a growing need in the country. Currently, services for persons diagnosed with cancer are limited both in the amount of services and the range of services. As medical/surgical care develops, it is important for ‘psychosocial care’ to be an essential part of the development. Recognising the magnitude of the needs and limited availability of professionals, a way forward would be to empower the individuals and families to address these psychosocial needs. There are well proven psychosocial interventions that can minimise psycho-social distress. Some of these are reading of experiences of other people with similar health condition, daily recording of feelings and experiences, sharing of feelings with family members, utilising all the available social supports, regular physical activity, communicating with care givers, inclusion of prayer/relaxation/meditation practices in daily life, maintaining routines/interests and giving attention to spiritual needs. There is much that can be achieved in the psychosocial area by mental health professionals through development of self-care materials for the literate and illiterate people, organising survivor support groups and continuously evaluating the different interventions. There are both challenges and opportunities to develop an Indian way of addressing the psycho-social needs of persons diagnosed with cancer. .
Take Home Message
The diagnosis of cancer is a major life experience. There are challenges relating to the understanding of the illness, going through the treatment, and making changes in the personal, family, professional, social and spiritual aspects of individual life. There is need for sharing coping skills with all persons diagnosed with cancer and their families.
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About The Author
R.Srinivasa Murthy, M.D., was Professor of Psychiatry at the National Institute of Mental Health and Neurosciences, Bangalore, India, from 1982-2003. Murthy has worked with World Health Organization extensively. He functioned as Editor-in-Chief of the World Health Report 2001, focussing on Mental Health (New Understanding-New Hope). From 2004, he worked with the WHO at its Eastern Mediterranean Regional Offices of Cairo, Khartoum and Amman. During 2006-2007, he worked as mental health officer of WHO-Iraq. In the last few years, he has been assisting Afghanistan, Somalia and South Sudan with the development of mental health programmes. Murthy was the first psychiatrists to study the mental health impact of the Bhopal Disaster (1984) and he continued to work towards mental health care of the Bhopal population till 2014. He has been working towards understanding the mental health impact of disasters along with the development of interventions to meet the psychosocial needs of survivors. He has authored a number of manuals of mental health care for non-specialists. He is currently working towards developing ‘self-care’ mental health care interventions for persons with ‘Intellectual and Developmental Disabilites’(IDD) and their families and for cáncer survivors. Murthy was diagnosed with colon cáncer in July 2013 and received surgical treatment and chemotherapy.