Pain is the most feared complication of cancer. Nearly 30-50% of patients with cancer suffer from pain. But what is really disturbing is that, in patients with terminal or advanced cancer, nearly 75 to 90% suffer from, sometimes unbearable pain. It has been estimated that approximately 80% of patients are diagnosed in the advanced stages of cancer and as many as 10 lakh patients require pain management.
It is not just pain that results in agony to the patients and their caregivers. Very often, there are associated symptoms such as extreme weakness, fatigue, loss of appetite, nausea & vomiting, constipation and insomnia. In addition, they have psychological symptoms like anxiety, depression, fear of suffering, irritability and even anger. They often have social issues like withdrawal from family members and society, fear of losing their job, financial concerns and they are often worried about the future of their near and dear ones. Many of these cancer patients also have existential issues and they often question God for their illness & suffering. Some patients are also under the assumption that they are paying a penance for their past sins.
Thus, suffering in patients with cancer is not entirely due to physical pain. Psychological, social and even spiritual issues can also contribute to the suffering of patients with cancer. In fact, physical pain & discomfort is only the tip of the iceberg and only one of the many facets of their suffering. Dame Cicely Saunders, who was the founder of palliative care in the 1960s, first elucidated the concept of ‘total pain’ in patients with cancer. She vividly described the inseparability of physical pain from mental suffering in these patients.
It is, therefore, obvious that one needs to address pain in its entirety. This means that we need to address physical pain as well as psychological symptoms, social concerns of the patient and even the spiritual issues that the patient is facing. This is ‘total pain management’. This would be a more holistic approach to deal with patients suffering from cancer as it would involve treating the person as a whole rather than just the disease.
What is palliative care?
The World Health Organization (WHO) defines palliative care as, ‘an approach that improves the quality of life of patients and their families facing a life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’
This definition of palliative care stresses on, ‘improving the quality of life’ and, ‘relief of suffering’. The WHO, in 1984, proposed a very simple and structured way to deal with cancer pain. This was termed the ‘WHO analgesic ladder’ and it is widely used for managing cancer pain even today. By following these guidelines, it is possible to provide satisfactory relief of pain in up to 75% of patients suffering from cancer pain. The basic premise of the WHO Ladder is that the pain medications are given orally (“by mouth”), at regular intervals (“by the clock”) and its dosing is individualized by actual relief of pain (“by the individual”). This regime of management is particularly useful for patients who are receiving care in their own homes (home care), as these drugs are given orally.
Many are under the assumption that having cancer means one has to suffer pain as well. This is not true. According to international human rights law, relief of pain is a human right and every person should have access to pain relief.
Cancer pain can be amenably relieved and patients need not necessarily suffer due to pain. Also, the quality of life in these patients can be improved by addressing pain and other problems associated with cancer. Most states in India have cancer centres and institutes with trained palliative care doctors, nurses, psychologists and social workers who can deliver palliative care to patients suffering from cancer. Also, there are many voluntary organizations, especially in major cities of India that are providing palliative care at the doorstep of the patients. Despite this, we still have a long way to go before every citizen of our country suffering from cancer can be provided palliative care. It has been estimated that palliative care is not available to 99% of the population in India. In fact, India is ranked near the bottom of the global league with regard to access to end-of-life care. This is the enormous burden that cancer has levied on the Indian society. However, many cancer institutes and pioneers of palliative care in India are trying to make inroads to every state in our country to ensure that palliative care is available at the grass root level and every citizen has access to palliative care.