The Burden of Caregiving: Roles and Challenges of Cancer Carers

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 most common scourges 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.

Roles of a Caregiver

As the carer is involved in an almost continuous cycle of activities for the patient, it begins to affect them as well.

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.

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How Much Support Do Caregivers Get?

Physical respite and help is very much needed at a lot of times.

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.

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 enrol the service of a social worker who can help with tasks like bathing/dressing etc.

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 for terminally ill patients, 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.

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.

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Situation in India

The immediate family members end up becoming their carers by default, with little understanding of the disease process or its future implications.

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.

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.

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 to guide families.

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

Lack of information adds to the anxiety. 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 also begins to experience a fear that s/he may miss to recognize an emergency or not be able to help the patient in an appropriate manner.

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What is the Way Forward?

An understanding of the disease is important so that cultural beliefs do not override sensible treatment decision making process.

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.
  • Carers also require extensive and intensive counselling, to help choose the line of management which is in the patient’s best interest.
  • Revamping of cancer care services in hospitals is important so that it becomes more holistic and guides the patient and the family in a systematic manner.
  • For the village and poor populations, creating a bevy of social support workers, akin to the anganwdi 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.

(Dr Kanchan Kaur is an Associate Director, Breast Services, Cancer Institute at Medanta.)

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