Killing her softly

While it is the larger tragedies that capture the public imagination, we tend to overlook the numerous quieter tragedies that decimate peopl...

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While it is the larger tragedies that capture the public imagination, we tend to overlook the numerous quieter tragedies that decimate people’s lives. We are reminded of this everyday as members of the CanSupport home care team. More often than not, as the majority of our patients are from the economically weaker section, after we enter people’s homes as professionals offering them medical, nursing and counselling support, we are soon faced with a piquant situation, where ensuring the continued survival and well being of the family becomes the most pressing need. This is especially true if the person who is ill and dying is the sole earning member of his family and has spent his all on treatment. The question is, what future can we offer these young families, namely, the women and children who will be left behind? Should we pretend this is none of our concern? But then, what happens to our commitment to address the “total pain” of the patients and families under our care?

The concept of “total pain” was first introduced by Dame Cicely Saunders, a nurse and later a social worker in a London hospital. In conversations with patients, she realised pain had many dimensions other than the physical. WHO was to later take this up in its definition of palliative care, describing it as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount.”

In the Indian context, what does “total pain” mean? Besides the physical element, certainly the financial is an important aspect, as is the psychological, social and spiritual. Relationships within the family also merit attention. We have found that a closely knit family with good inter-personal communication amongst its members ensures a secure and loving environment and facilitates emotional coping. However, there is another aspect that deserves equal mention and is the cause of much pain but about which at present we do very little. I refer here to the vulnerability of dependents left behind, especially of women and young female children. They face the prospect of abject poverty and perpetual exploitation by others.

In order to ensure the continued survival with dignity of women and children left behind, here are a few suggestions. Doctors have to stop insisting on more and more expensive treatments even when they know the patient is terminal and can ill afford more treatments. They must be open to discussing this issue with the spouse, even if she is a woman and a home maker. Palliative care must become part of primary care in every medical institution and clinic and should be offered appropriately and at minimal cost. Widows should be offered free instruction and training to help them earn a livelihood. Children in school, especially girls, should be given free tuition and helped to complete their high school education.