How many of us watch the repeat telecast of a TV show or a match with the same interest and anticipation as for a live telecast? How can you maintain the same level of curiosity and engrossment when you already know the result? And what if the same concept applies to our lives? What if we know exactly how much time we have left before we go for the eternal sleep? Or worse, what do we do when we realise someone very dear to us is about to leave us, forever?
Over 1 million new cancer cases are being reported in India each year. This figure is projected to reach 1.7 million by 2035. According to a WHO report, 14 million new cancer patients are diagnosed every year around the globe. In India, because of lack of awareness and regular screening, 80% of cancer patients seek treatment when the disease has reached stage 3 or stage 4. Two-thirds of the patients with cancer are incurable when diagnosed. The survival rate of cancer patients in India is lower than many other countries.
The word “cancer” spells doom. But life doesn’t end with diagnosis; it continues to breed dreams, hope and fears. This article is not about how cancer happens, its different types or how can it be prevented (just for the record, I am pretty certain that the pathetic advertisement featuring Mukesh Harane being shown in movie theatres cannot help at all). This article is about the emotional and psychological side of cancer, the situation faced by a patient and his relatives and how the society reacts to the “news”. This article is about the journey from “after I am cured….” to “before I die…”
The first thing that comes to a patient’s mind after being told about his condition is: “Why me?”. He suddenly starts to feel lonely and disconnected from the rest of the world. He is dejected and depressed. Clinical depression is very common in cancer patients. From uncertainty and adjustment disorders, to clinical depression and suicidal urges, the patient goes through immense mental torture. Suicidal thoughts are commonplace as the patient does not want to become a burden on others. The want of pain-free death and concern for his children and relatives are what hound him. In cancer patients, death anxiety is very strong. If deconstructed, it has several elements to it, like fear of pain and suffering, anxiety on behalf of loved ones and fear of the unknown. Going through chemotherapy is mentally and physically excruciating. It has devastating effects on the body like anaemia, bleeding, diarrhoea, fatigue, hair loss, infections, skin deterioration etc. It also leads to body image concerns. I am consciously avoiding the gory details. Apart from all this, it is mentally and emotionally agonizing. The patient is totally shattered. In such a scenario, emotional healing is more important even if physical healing is not possible. Improve access to oral morphine is a must for the treatment of moderate to severe cancer pain, suffered by over 80% patients in terminal phase.
The sentimental-me believes that it is even tougher on the relatives of the patient. Nobody wants to see their loved ones in such a torturous state. In such cases, the communication between the patient and the relatives totally collapses. The relatives are not asking the patient what he wants at the end of his life because they want to protect him from the truth. In western countries, the patient has the right to know the details of his disease. But in India, it is the relatives who make all the decisions. They do not know how to handle the patient often thinking that support means silencing the patient, telling him that everything is going to be alright. They feel guilty for not being there with the patient. So, they want to try all the possible methods of treating the patients even when the chances of survival are non-existent, inadvertently making the patient go through more pain, mentally and physically.
Our infrastructure for cancer patients is a cruel joke. In Australia, there is one doctor for every 70 cancer patients. In India, there is not even one doctor for every 7000 cancer patients. Although I admit that India and Australia are not objectively comparable, you got to agree we are not even close to providing a life of dignity, however short it may be, to our cancer patients. The ethics of medicine are determined by 4 principles: autonomy, beneficence, non-malfeasance and justice. Unfortunately, none of these principles equips a doctor to give an informed and humane end-of-life talk to the patient. Patients go through mechanical ventilation, resuscitation (meaning- to revive from apparent death) and are admitted to ICUs. These aggressive medical therapies worsen the patient’s quality of life. In the draft National Health Policy 2015, government proposed increasing health expenditure to 2.5% of the GDP from the present 1.2%. The focus, it said, would be on improving Maternal Mortality Rate, controlling infectious diseases etc. No mention was made of funding for end-of-life care for terminally ill patients. I guess the reason for it has more to do with the fact that the dead cannot vote, rather than ignorance. There is no “Do Not Resuscitate” policy in India. This means that when patients are admitted to ICUs, doctors are forced to make unnecessary interventions and try to resuscitate the patient because they are scared of the law suits.
I believe the most important element of end-of-life care is quality of life. In India, palliative care (meaning- care for the terminally ill patients and their children, especially that provided by an organised health service) is only provided at the end of one’s life when it should begin from the time the patient is diagnosed. This helps the patient get reconciled to his disease and face life with dignity. A study showed 83% Indians would prefer to die at home. But when the disease is aggressively treated with little possibility of cure, death takes place in ICUs with the patient fully ventilated.
It is ironic how we start to value something only when it is taken away from us. It is noted that a cancer patient, in his last days, starts valuing life a lot more than he did before. He becomes spiritual and finds love in everyone and everything. He tries to help other patients suffering like him. So, is cancer what it takes for us to become good human beings?
In India, breast cancer is a taboo. I guess we are naive enough to frown at anything to do with breasts. It is beyond me how we sexualise everything related to breasts, without realising that breast cancer is the most common type of cancer in urban India. It is also the most common type of cancer across India, after cervical cancer. 1 in 28 women suffers from breast cancer during her lifetime in India (1 in 22 in urban areas). Over 60% of its cases are detected in advanced stages. Early screening, tests and mammography is a must in a country like India. We have to remove the awkwardness and myths surrounding breast cancer, for our own sake.
Thinking about it, I comprehend that death itself is a taboo subject in India. People do not discuss or accept it. It is still considered “something that happens to someone else”. I hold that a healthy discussion about death is paramount to understand it and come to terms with our own mortality. As I explore words to conclude this article, two great quotations come to my mind. The first one from Albus Dumbledore reads, “After all, to the well-organised mind, death is but the next great adventure”. On a similar note, Rabindra Nath Tagore once said, “Death is not extinguishing the light. It is only putting out the lamp because the dawn has come.”