It’s rare to see someone satisfied with his/her life irrespective of the power, money and status they possess which are rarely reasons to stay happy/unhappy at the end of day. I believe that its purely our mindset that affects our mental well-being and happiness quotient. If you doubt whether happiness and peace of mind have any roles in affecting your health even the World Health Organization recognizes it as a part of the concept of health and says that it has an indispensable role in affecting your quality of life. This fact holds good in the case of common man but what about its role in people living with advanced cancer? We need to mention about palliative care at this point as this is the treatment used to relieve pain and improve quality of life of patients in their advanced stages of cancer where there is no hope for cure. This exists as one of the topmost needs of people living worldwide with cancer, especially in those with advanced stages of cancer where cure is highly improbable and relief from physical, psychosocial and spiritual problems is achieved almost 90% of the time with palliative care.
Cancer is the second leading cause of death worldwide and was responsible for more than 9.6 million deaths in 2018. Almost 1 in 6 deaths is due to cancer, there are more than 14 million new cases diagnosed annually and more than 32 million people living with the disease. Of these 32 million there are some of them undergoing treatments in the form of chemo and radiation to kill the cancer cells and few who are in the advanced stages where complete recovery is not possible. The probability of treatment in these patients is close to nil but even these people live longer and these days, want to live well despite their nearing death which calls for more and more research and probing into this field of study.
Frame of Mind of People with Advance Stage Cancer
Old age always keeps a person in constant fear of death as the individual expects it at any time in life. Likewise, an advanced-stage cancer patient too fears death anytime and this causes psychological impact on the person. Those with advanced cancer are burdened with multiple issues such as side effects from prolonged treatments, complicacies of the health system and the burden of living with a certain guarantee period for life. These sometimes changes the person’s entire perspective on life and death. Almost 15-19% patients in palliative and cancer care experience depression, 10% experience anxiety and 38% experience mood disorders. Physicians are obliged to provide psychological support to all of their patients but its been noticed that physicians mostly focus on physical health in comparison to psychological health. Advanced cancer patients suffer greatly from psychological issues but the problem is that there are not many interventions and methods addressing these issues and providing effective solution to patients.
Researchers are now more into understanding the thought process of people with advanced cancer and there is in-depth study conducted regarding the outlook these people have towards dying. One recent metasynthesis found that people with advanced cancer wished to lead a normal life despite their nearing death and physical suffering too trying to find a new meaning in life. Such people include various strategies such as avoidance, try to be normal, focus on the positive aspects in life, minimize the disease’s impact and try to predict the output of their present treatment.
While we do know that people survive through advancer cancer living a life well-lived the process and manner in which they do it are not quite clear. A research focused on 43 participants who were dealing well with the complications of different chronic illnesses in such a superb way that the researchers were surprised and happy for them. A theory (Theory of Living Well with Chronic Disease) based on the research was framed and this theory shows that there is an iterative ‘healing Process of Moving On’ through which people revisit five interconnected phases (The fight, Accepting, Living with the Chronic illness, Sharing the Experience and Reconstructing Life). The individuals keep rotating between these phases depending on their illness condition and frame of mind.
Two authors were involved in the secondary study, the first one was familiar with the theory which led to a question whether the theory could be applied to different cultures as well. This present study is a secondary analysis of quality data collected in a phenomenological study that was conducted to gain a deep understanding of the thought process in people with advanced cancer. The current study mainly focuses on the process of living and has a 2-fold aim – to explain the process of living and support patients when time is uncertain and limited, and to check whether the theory formulated in the previous study could be applied to a more specific scenario of advanced cancer. Original data was collected by interviewing 22 Spanish participants of which 12 of them were men and 10 were women who were from 45 to 83 years of age. The time interval between the interview and participant’s death varied from 22 days to 2 years. The patients were asked questions such as ‘Would you describe your life with this disease?’ Two researchers were involved and both of them listened to the audio recording of the answer, coded one transcript at a time and discussed about it before moving to the next. Two main questions evolved while coding-What is it about? What is going on here (in relation to living with advanced cancer)? The second step involved comparing the codes with the Theory based on questions such as ‘Does this code fit the Theory?’, ‘If so, how?’ and ‘If not, what is going on that is different?’ While in the Theory the first phase was called ‘The Fight’ in the secondary analysis participants experienced more of ‘Struggling’. The second analysis showed that participants with advanced cancer lived around the concept of ‘Awareness of Dying’ with five phases that included Struggling, Accepting, Living with Advanced Cancer, Sharing the Illness Experience and Reconstructing Life.
Struggling: There were responses of shock, anger, anxiety and fear in participants when they realized that they would die anytime soon. The duration and intensity varied and in due course they learnt to let go of the struggle and move forward in life as the struggle was creating more problems alongside the emotional disturbance.
Accepting: This phase is where the participants started accepting the presence of advanced cancer in life as it helped them attain peacefulness in life.
Living with Advanced Cancer: Four strategies help in living with advanced cancer when the patient’s time limit in life is short-making life adjustments, maintaining a positive attitude, normalizing and hoping. Normalizing is quite difficult as not everyone can lead a normal life-some of them are hospitalized for months together while some get to lead their normal daily routine life. For those who cannot experience normalization hoping was the one they sought solace from-hoping to get out of the hospital and resuming their normal life.
Sharing the Illness Experience: Many patients feel good to have someone to share their feelings with, someone to stay with them daily every day and night and having someone to count on to share their experience. At the same time the patients were worried that their sufferings were also shared by their dear ones.
Reconstructing Life: Here, patients were focused more on living thereby pushing advanced cancer into the background. Focus was given more to shifting one’s perspective away from illness and living in the moment-a way to maximize precious time in life.
This study clearly shows that accepting is the best way to move forward in people with advanced cancer. Staying positive, making best use of the time provided and cherishing the care and affection of family members are golden ideas that can be practiced by patients with advanced cancer.
In another study 26 participants suffering from advanced breast, prostate, lung and colorectal cancer discussed about four different coping strategies that they practiced in their life: everyday pragmatism, self-awareness, relying on others and communicating.
Everyday pragmatism: There are three sub-strategies involved in this including being realistic, changing priorities and focus on the everyday. Participants felt that being realistic was much needed for maintaining wellbeing as it helped in decreasing depression and anxiety. It also helped the volunteers accept the presence of the disease and the reduced life expectancy in course of time.
Self-awareness: Volunteers planned activities, outings or ‘good days’ and created a self-awareness of coping with various strategies. The patients also made conscious efforts to like few foods as they were good for their health, acknowledged the advantages of getting enough rest and fight off fatigue. They also experienced well-being by indulging themselves in small treats, rewards and certain activities that helped them switch off the diagnosis and prognosis such as shopping or visiting loved ones. But this isn’t possible on all days as many are spent in resting owing to symptoms such as nausea or vomiting or general fatigue.
Relying on Others: Participants spoke about relying on others for emotional and social support but some of them expressed that to accept the need for support was challenging. Though they didn’t always ask for support the participants took enough time to express their gratitude to people who offered their support in times of need.
Communication: This was a coping strategy by itself and also helped improve the effectiveness of other strategies. While some people felt it comforting to communicate with complete openness this level of disclosure did not suit certain other participants.
This study too shows that people with advanced cancer develop coping strategies that uplift their well-being. The patients also wish to develop such strategies at an early stage of their disease trajectory by discussing with their peers and healthcare professionals. Physicians too are obliged to identify people with advanced cancer who might benefit from access to such information about coping strategies. Hence, these physicians also cater to the person’s psychological well-being besides caring to their physical wellness.
Palliative care is becoming more and more important and is a central aspect to cancer care. We cannot extend the life tenure of patients with advanced cancer but surely can contribute towards their well-being, hope, happiness, trust and peace by taking care of their mental and physical health.
People with Advanced Cancer: The Process of Living Well with Awareness of Dying: https://journals.sagepub.com/doi/full/10.1177/1049732318816298
Coping Well with Advanced Cancer: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5249149/
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Dr. Nafeesa Imteyaz of First Eat Right clinic, is the Best Dietitian Nutritionist in Bangalore. Best Dietitian Nutritionist in Pune. Best Dietitian Nutritionist in Hyderabad. Best Dietitian Nutritionist in Chennai. Best Dietitian Nutritionist in Mumbai. Best Dietitian Nutritionist in Delhi. Best Dietitian Nutritionist in Kolkata.