Strength does not come from physical capacity; it comes from an indomitable will.
-Mahatma Gandhi

It is this will that drives a caregiver.

Caregivers/carers are defined as people who “provide unpaid care by looking after an ill, frail or disabled family member, friend or partner”.

Cancer is rapidly becoming one of the commonest scrouges of medicine in recent times. It brings with it a whole spectrum of life changing events that not only the cancer sufferer, but also his immediate circle of family and friends go through.

From the point of diagnosis, through the long journey of hospital visits for tests and treatments and to the point of a stage of palliation and death, the patient and those involved get pulled into a vortex of unending physical, financial and emotional demands.

Care of a cancer patient can never be in isolation and most certainly cannot be met in a hospital based environment alone. A well established cancer set up can provide the necessary medical and initial psychological support. However the physical and emotional scars that the patient carries home, can only be dealt with by the presence of a round the clock support system. This is where caregivers step in.

Worldwide, there is a common pattern in that in majority of cases, it is a family member or a friend who takes on the role of a care provider.

The primary carer of a cancer patient plays a multitude of roles. These include tasks like helping the patient with routine day to day activities of personal care, shopping for groceries and essentials and preparation of food etc.

They help to co-ordinate visits to the hospital by booking appointments and providing transport. Some carers go on to provide nursing support by helping with wound dressings and also in some cases, administering injectables and i/v fluids. As the carer is involved in an almost continuous cycle of activities for the patient, it begins to affect them by causing anxiety, depression, fatigue, sleep disturbances, physical injury etc. This has a significant impact on their quality of life and their routine work/job.

It is essential to understand these challenges and create a framework within which a carer finds support for the enormous task that he/she has taken upon themselves. However, there is huge discrepancy in the support that the caregiver gets in different countries.

In the western world, caregiving is recognized as a formal arrangement rather than an obligation. There is a well established social support structure specifically to target the needs of a carer. This is government funded and helps a caregiver by providing physical, emotional, medical and also to some degree financial backup.

In the UK, there is a strong network of government agencies who work in tandem with carers to make their job easy. Carers save the UK economy an estimated £87bn a year, and economic considerations form a key element in government policy to support carers.

The government recognizes that carers can suffer from financial difficulties due to work related cutbacks as they are unable to carry on with their routine work. They are therefore given financial aid in the form of tax breaks and benefits.

Physical respite and help is very much needed at a lot of times. For this, the carer can enroll the service of a social worker who can come in at particular times of the day to help with tasks like bathing/dressing etc. They can also help with transportation of the patient for hospital visits.

For patients who are terminally ill and require injectables or even for patients with fungating cancers requiring dressings, there is a robust General Practitioner (GP) and community nurse system, which helps in meeting the basic medical demands of the patient.

Caregivers can entail the services of a multitude of governmental and non- governmental organisations, which guides them through every step along the way.

A major source of backup support comes from hospices. These are centres that specialise in care for terminally ill people and provide palliative care to improve the lives of people whose illness is not curable . A quarter-of-a-million patients are cared for by hospices in the UK each year, either in a hospice or in their own home.

Hospices can offer a wide range of services such as complementary therapies, counselling, spiritual care and bereavement support. They specialise in controlling pain and other symptoms, and in supporting the patient and their family and allow the carer to take a break. Hospices are free and a person may be referred at any time between the diagnosis of an illness and the end of life.

Unfortunately, none of the above systems is in practice in India. Cancer cases in India are on a phenomenal rise. A majority of them present at a late stage. Hospital based management of these cases is for limited indications for a limited period of time. The immediate family members end up becoming their carers by default, with little understanding of the disease process or its future implications. Sadly, there is very little help at hand to guide them. What compounds matters is that religious and cultural beliefs play a very strong role in deciding treatment.

On the contrary, in the UK a patient when diagnosed with cancer would be guided by dedicated specialty specific cancer nurses. They help the family to understand the true nature of the disease. Extensive written literature, video and audio CD’s are provided to explain the process. It is notable that this caters to the culturally varied population and is provided in languages ranging from Swahili, to gujrati. These nurses help the family by putting them in touch with the community based social support network.

Sadly there is a severe dearth of any such support for cancer patients and their carers in India. Most Indian cities do have an active cancer care organization, but due to limitation of their resources, they can also help only to a certain extent.

The financial burden of treating a cancer patient can be significant even for most middle class families. For the poorer section of the society, which constitutes a majority of the population, the scenario becomes even more bleak. To add to this, if the main earning member of the family is the primary carer, it takes a toll on their work and earnings, compounding the matter further.

In a private hospital set up where the attending patients belong to a more affluent class, money may not be a matter of significant concern. This strata of society is to a great extent immune to the financial burdens of cancer and can afford to get physical respite in the form of home based private nursing care They are also able to arrange home help in the form of trained nurses, who help the family with the day to day routine activities of the patient. However, the challenges that they face in terms of a systematic approach towards care of the terminally ill is common across the masses. Sadly there are hardly any government or private agencies that would guide families on what to do in terms of emergencies when they are caring for the terminally ill cancer patient at their house.

Another common difficulty faced across all classes is the lack of any psychological support for the family and careers as they live through the emotional effects of the cancer with the cancer patient.

What adds to the anxiety is a lack of information. There is very little understanding on what to expect in a terminally ill patient and how to manage the medical issues that can arise in these patients. The carer along with facing the above mentioned difficulties also begins to experience a fear that he may miss to recognize an emergency or not be able to help the patient in an appropriate manner. This anxiety is probably lesser in the educated carers, who by their own research are able to formulate a sensible plan for their patient.

As the detection of cancer cases in India continues to be on the rise, there needs to be a parallel increase in the framework of support that is provided to the patient and his/her carer. It is important to come up with a simple basic setup which is standardized and is reproducible across the population. So what is the way forward?

A strong government will forms the pivot of what needs to be a major change in the way cancer is perceived and cancer care services are organized. A major public information campaign is the need of the hour. This needs to target two major issues, one is of late presentation, which in turn increases the burden of palliative care population. Secondly, an understanding of the disease so that cultural beliefs do not override sensible treatment decision making process. A significant proportion of patients choose to opt for alternative treatments with doubtful curative value. This wastes precious time and makes their condition unsalvageable. As carers in India play a major role in deciding the treatment for the patient, they require extensive and intensive counselling , to help choose the line of management which is in the patient’s best interest.

We in India need to have a formal structure which is regularly audited and monitored. This ensures that quality of care is standardized.

Revamping of cancer care services on hospitals is important so that it becomes more holistic and guides the patient and the family in a systematic manner.

In utopian terms, social strata should not guide the standard of care. For the village and poor populations, creating a bevy of social support workers, akin to the anganwadi workers could go a long way in changing the face of cancer care in India.

Enlisting the role of NGO’s could be of great help as they have voluntary workers who are passionate about the work they do.

Local dispensaries and PHC’s need to be equipped with medication and the staff needs to be trained in dealing with pain management and emergencies in the terminally ill patient.

Psychotherapist, Dr. Denholm states that caregiving has been awarded the nickname of “rollercoaster ride from hell” because every day is brought with new challenges, demands, and adjustments”. This is even more true in the Indian setting where a caregiver lives in isolation without any form of systematic support. A wake up call is needed to change this and allow Indian cancer patients and their hapless caregivers to cope in a dignified manner.