Cancer is known to have become one of the most dreadful diseases that have affected millions throughout the world. It is estimated that half of all men and one-third of all women in the US alone will develop cancer during their lifetimes. In another estimation by WHO, around 20 million people will develop cancer by 2020 worldwide with 70% in the developing countries, and out of those in developing countries only 5% will have access to any healthcare system.
With recent advances in the field of cancer biology, while majority of the cancers are clinically manageable if not completely curable in developed countries with increase in survival years with quality of life, in poor countries such as India once cancer is diagnosed patients are often left to the mercy of God as there are hardly any dedicated cancer hospitals in India except few big cities such as Mumbai and Delhi. For significantly lower number of patients who are lucky enough to be diagnosed in early stages of cancers which is very uncommon owing to the lack of general health awareness among common people and lack of routine health check-up programs such as annual mammograms or endoscopy etc. Majority of the patients with cancers are diagnosed when cancer is inoperable (in patients with solid cancers) and due to the lack of a super specialty program namely Medical Oncology in most of the hospitals, these patients are left with only one choice, to go to the radiotherapists (even radiotherapy departments are quite uncommon in majority of hospitals even in bigger cities in India) who eventually become overwhelmed with number of patients they have to deal with using their limited resources including often nonfunctional old generation machines. It is not uncommon to end a radiotherapy session in the middle of it due to power outage, only God knows what might be happening to those patients who go through such radiotherapy sessions which are forced to be terminated by power outage because there is no such study which has ever been conducted anywhere in the world to determine whether or not power interrupted radiation beams (that are aimed to kill cancer cells) do actually kill the cancer cells as effectively as they do without any such technical interruptions? Well let us assume, nothing bad happens during such kind of technical hiatus as anyways we are not talking about effectiveness of cancer treatment in India. As I mentioned earlier, in spite of best intention a radiotherapist may have to treat a cancer patient, due to delay in start of radiation therapy because of long waiting line, old generation and often nonfunctional machines, and so many different technical problems that may occur during a radiotherapy session, most of these patients end up having very short span of life ranging from few months to few years depending upon various factors including stage of the disease and type of cancer.
After chemotherapy and/or radiotherapy is over, while patient gets a sense of relief of having concurred the disease (which may or may not be true), another episode of suffering starts for a cancer survivor. Most of these patients develop side effects of radiotherapy and chemotherapy which in most cases adversely affect day to day life of a cancer survivor. Few examples of radiotherapy related side-effects are as follows:
Radiation therapy: side effects
Radiation therapy treats cancer by using high energy to kill tumor cells. The goal is to kill or damage cancer cells without hurting healthy cells however, it is well known that most of the radiation therapy modalities available in India are not updated at par with international standards and end up killing normal healthy cells as well which often results in moderate to severe side effects. The specific side effects one may have depends on the type of radiation being used, the dose of radiation, the area of the body that's being targeted, and the state of patient’s health. There are actually two kinds of side effects from radiation therapy -- early and late. Early side effects, such as nausea or fatigue, are usually temporary. They develop during or right after treatment and last for several weeks after treatment ends, but then improve. Late side effects, such as lung or heart problems, may take years to develop and are often permanent when they do. The most common early side effects from radiation therapy are fatigue and skin problems. Other early side effects such as hair loss and nausea are typically specific to the site of the tumor being treated.
Most cancer hospitals in western countries have counselors and/or do offer a class to help educate the patients about possible early and late side effects of radiation/chemo therapy and ways to conserve energy, reduce stress, and use distraction to not focus on the fatigue, pain and other problems, prioritize the regular activities so that patients do the ones that are most important to them first when they feel less fatigued. They also educate on importance of nutritious diet and exercise. Unfortunately, cancer patients in India going through chemo- or radiotherapy do not have such privilege of being educated about forthcoming problems intensities of which can be reduced with prior awareness if not completely avoided.
One of the common side effects from radiotherapy is lymphedema. It is more common among women who have gone through radiotherapy for breast cancer or gynecologic cancers. Lymphedema is an accumulation of lymphatic fluid (lymph stasis) that causes an abnormal swelling of an extremity. Lymphedema affects 90 million to 150 million people worldwide each year. While for most patients, the mild swelling of a limb that may occur after lymph node removal during surgery resolves within a few weeks of surgery, in 10 to 30 percent of patients, however, the edema (swelling, or fluid accumulation) recurs, resulting in chronic lymphedema, which is associated with recurrent infections, pain, impaired limb mobility, and a decreased quality of life. It is a condition there is no good treatment for and no rational way of preventing.
In a recent personal experience, I shockingly learnt from a relative (located in a mid-size town in Northern India) who has developed radiation therapy induced lymphedema, that most of the physicians in that town either are ignorant of this side effect of radiotherapy or do not have experience of managing lymphedema with this etiology as they treated the patient with high dose antibiotics which has no role in radiation induced and infection free lymphedema, and those who acknowledged it to be lymphedema showed their unwillingness to treat this patient probably due to the fact that this condition is beyond their area of expertise. Or after realizing the fact that such conditions have very dismal prognosis these otherwise very able physicians considered to invest their time and resources in treating rather some other patient with manageable or curable disease. And I do not blame them, it is not the job of a radiotherapist who is not specialized in managing side-effects (a radiotherapist is rather too busy making treatment strategies for newly diagnosed and/or old patients who are in immediate need to receive radiotherapy/chemotherapy. It is rather a medical oncologist (a rare super-specialty which hardly exists in most of the academic university hospitals in India), or a palliative care specialist (who don’t exist at all in India) who should take care of such debilitating conditions.
What is Palliative Care?
Palliative care is an area of healthcare that focuses on relieving and preventing the suffering of patients. Unlike hospice care which is often confused with palliative care, palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual, and social concerns that arise with advanced illness.
Medications and treatments are said to have a palliative effect if they relieve symptoms without having a curative effect on the underlying disease or cause. This can include treating nausea related to chemotherapy or something as simple as morphine to treat a broken leg or ibuprofen to treat aching related to a flu infection.
Palliative care for cancer patients in India: a realistic dream
The focus on a patient's quality of life has increased greatly during the past twenty years. In the United States alone, 55% of hospitals with more than 100 beds offer a palliative-care program, and nearly one-fifth of community hospitals have palliative-care programs. Some European countries have even better palliative care availability. A relatively recent development is the concept of a dedicated health care team that is entirely geared toward palliative treatment: a palliative-care team. As we all are aware of high mortality rate and almost all of cancer patients (in Indian context) dying in pain accompanied by so many other physiological complications, one can easily appreciate the need of a palliative care center in hospitals in India.
In my opinion, while advocating for state-of-art cancer hospitals in every small and big cities is still unrealistic and probably unfair demand from Indian government who has much bigger challenges in health sector such as to fight against malaria, tuberculosis and, Japanese Encephalitis which alone kills thousands of children each year in one small town namely Gorakhpur, UP, located in northern part India, I believe it would not be too much to ask if government could establish independent /autonomous departments of Palliative Medicine in every university hospitals that could take care of dying patients from cancers and many other debilitating diseases. In west, almost every hospital has an independent unit of palliative medicine. I think it is right of every human being on this earth to die gracefully, without pain, and without other complications which could have otherwise been avoided if we had these palliative care specialists in every hospital premises in India.
However, in order to make it a reality, authorities who decide what to include in curriculum of medical education in India such as Medical Council of India, should consider about starting a new MD program which focuses on to train physicians to become specialists and leaders in the field of palliative medicine, especially those planning a career in an academic cancer center. The focus of training should be the development of expertise in:
- Diagnosis and treatment of pain syndromes associated with cancer and cancer therapy
- Diagnosis and treatment of non-pain symptoms associated with cancer and other life-limiting illness
- Diagnosis and treatment of the neurological, psychiatric, and psychosocial complications of cancer and other life-limiting illness
- Communication skills with patients, families, and professional colleagues
- Clinical research methods used to address symptom control and quality of life
- Basic principles and practical applications of the medical ethics and legal aspects of pain management and palliative care
- Cultural, spiritual, religious, and existential aspects of palliative care
- Care of the imminently dying patient including management of terminal symptoms
- Assessment and management of patients in community settings, such as home and long-term care
I find it a typical example of deductive fallacy to open new institutions with promise of unrealistic dreams such as “Institute of Molecular Medicine” or “Institute of Regenerative Medicine” in cities like Lucknow, Jabalpur, Ranchi or Patna where they do not even have facilities to perform PET scans to diagnose some nuances of malignant cancers. These are the places where a patient who has recently been diagnosed with cancer and immediately needs a session of radiotherapy to help prevent his cancer from spreading to other organs, has to wait for somewhat 3-6 months before his actual cancer therapy starts just because there a long waiting line of cancer patients and so few radiotherapy units (often 1-3 for a whole state) do exist in those places let alone a dedicated cancer center. Well, if you can’t provide them reasonable treatment for their cancer (it will certainly take at least few decades to have modern, state-of art treatment modalities and, specialists available in Indian hospitals at par with the west), at least help them die peacefully with dignity and without pain. And to do so, you need palliative medicine units in at least every university hospitals and this is a realistic goal that can be achieved with not much infrastructural investment.