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.
