Palliative Care : Love in a time of Hopelessness

A couple of years ago a friend of ours was diagnosed with cancer. After the usual treatment with radio therapy and chemo therapy had run its course and it was clear that the patient was terminal, he was moved home. However the rigor of looking after the demands of some one who was getting weaker by the day was far too demanding for the family which too understandably was going through its own emotional stress. Some one suggested that the patient be shifted to a hospice. The suggestion was made on two counts – first, that this would provide an opportunity for the family which was physically and emotionally exhausted to recuperate and secondly because as a person approaches an “ end of life” situation, the level of care required becomes increasingly professional with pain management components combining with emotional and spiritual therapy.

At that time, in the city of Delhi, there was only one hospice existing that any one knew of; so some one went off to enquire. The nuns running it were welcoming enough but said that they usually were quite full and a place became vacant usually when some one passed away. In effect, there was a waiting list for their facility at most times. However on this occasion, a bed had just become available fortuitously which could be allotted. So the friend was shifted to the hospice where amidst the best possible care that he could have received under the circumstances. He died there a few days later.

With increasing life expectancy in India the incidence of diseases like cancer are on the rise and yet as we found out through our own experience, we are only beginning to recognize the value and significance of palliative care or” end of life” care as it is also has been termed. Palliative care in India is beset by many barriers. A key factor is the ominous overtones inherent in the word “palliative” or end of life. Even if all available evidence says so, it is not easy for any one to accept that their loved one is terminally ill and that conventional treatment to try and “cure” is not going to work any more. It is not easy to accept that the wisest and the most compassionate course of action after a certain point of time is to prepare some one for their last days. End of life care begins operating from the premise that a cure is no longer possible. The focus of care and treatment starts with the intent of accepting the inevitable and making the patient spiritually, emotionally and physically prepared for dying. This is a rather radical paradigm shift for the medical and nursing care givers too, as their traditional training them prepares them to treat with the intent to cure.

Typically palliative care in India has typically tended to be restricted to increasing shots of morphine as cancer progresses through the body. But of course palliative care is more than pain relief though that is an important component no doubt and will continue to be so. The rise of HIV & AIDS and other debilitating diseases has widened the parameters of palliative care and it is no longer just pain relief or “end of life” care. Today it is not only terminal care or only for dying. “Palliative care now emphasizes the quality of life of the patient and the treatment required to maintain as normal and positive a life as possible, irrespective of the number of years of life left and whether or not eventual cure is possible.”

Incidentally, although palliative care is a relatively new field in the country, one state where it has stuck deep roots is Kerala. The state has two-thirds of the approximately 100 palliative care services in the country. These services cover a population of 32 million in a country of over a billion people which of course is grossly inadequate. The missing link as well as the gap- deliberate or otherwise is summed up well by the statement made some time in the late 1990s, the famous psycho-oncologist Buckman who said that “there was one missing chapter in Harrison’s Textbook of Internal Medicine. The missing chapter was, “What do you do when all the treatment advised in all the other chapters fail?”

Palliative care is that missing chapter. It is missing in our planning, priorities and programs but is fast emerging from the shadows as an urgent necessity as we and our loved ones live longer and become more and more prone to debilitating and life threatening diseases that can not be perhaps be cured but with some a professional approach endured, and possibly endure well.

A Bahu from Bengal

Kerala has been a pioneer in man power export in many areas and for long. But a new manifestation of this export should be causing all of disquiet. The state has largely been known for its export of man power as NRIs but of late it has begun exporting women as brides in girl starved North Indian states like Haryana. On the face of it, cross cultural marriages in an ethnically fragile country ought to be encouraged as a cementing factor – except for two things – The “ export” of brides and their relatively easy availability would mean that there is even lesser incentive for communities in many of these North Indian States to abort female fetuses. Demographic threats have often been held out as a potential deterrent that might work to retard the increasingly wide spread malaise of female feticide.

The other thing that is happening is that human trafficking, particularly trafficking in women and minor girls is shifting shapes and is often enough now coming disguised as marriages. Trafficked women are no longer clandestinely bought and sold as used to mostly happen, it is possible now to “marry’ such women and then “divorce’ such women who then go on to “ marry” other men.

With marriage – whatever be its colors enjoying social sanction, it becomes difficult to prosecute any one and with birth certificates and mirage registrations largely non existent in rural hinterlands, it is next to impossible prove that a particular girl was a minor or that a particular woman was not married but trafficked. In India in any case, the Prevention of Immoral Traffic Act despite its name, covers only offences occurring in brothels and non brothel based trafficking as occurs in these kind of sham marriages are not covered. So effectively India lacks current ant trafficking laws.

Of course the issue of trafficking and women being trafficked is not restricted to Kerala and is perhaps more rampant with more dire consequences in other impoverished states. “Trafficking can be disguised as migration, commercial sex or marriage. But what begins as a voluntary decision often ends up as trafficking as victims find themselves in unfamiliar destinations, subjected to unexpected work,” A BBC report for instance quoting the Assam police informs that since 1996 3,184 women and 3,840 female children have gone missing in the state and many have ended up working as call-girls around Delhi or used as “sex slaves” by wealthy landlords in states like Punjab and Haryana. That piece of statistic means that we are talking of about two women a day.

The market rate for a bride currently it seems is between 4,000 and 30,000 rupees ($88 to $660) and the custom of buying brides has not just infected the states of Haryana and Punjab only, it is spreading. In a district where the urban sex ratio is the lowest in the country at 678/1,000 and where the largest tehsil has a sex ratio of 535/1,000, the system of bride buying has become quite rampant in the last five years. Shahjahanpur’s block Bhawaal Kheda has several villages where, due to the low sex ratio, men have been buying brides from states like West Bengal, Orissa, Jharkhand and Bihar.

Coming back to the case of the brides out sourced , even if a woman is not bought and sold in the slave market, the racial memory of polyandry as in Draupadi it seems still persists. As the Hindu reports “ In some villages in Punjab, however, all the men in a household have access to the bought bride. She has no choice. Even if she is married to one brother, she must be available to all the other brothers in the house. Thus, polyandry exists, particularly in poor households where only one man can “buy” a wife. Sex selection has ensured that there are too few local women available. And poverty has dictated that only those with money can “buy” a woman. And with sex ratios touching 535 girls per 1000 boys in parts of the country, it may be that soon in places there may be no women to celebrate or observe the annual International Women’s’ Day that just went by.