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.

Governance : The Drill of Delay

Girija Soni received a cheque of Rs.1, 40,000 from the Madhya Pradesh government for the treatment of heart disease. She should be considered lucky on many counts. She was a poor woman who had applied to the government for help and had been favored with can be considered a significant sum to help her out with her treatment. There was only thing that spoilt the day. By the time, she received her cheque, she was dead. This was not the case of the cheque reaching a little late because of some postal delay. By the time cheque reached, Girija Soni had been dead for over thirty three years. The same article cites the instance of one Rakesh, who had been admitted to Bhopal’s cancer hospital for treatment. Ramrati, his mother too had approached the authorities for financial help in her case, it took the government over six-months to provide the money. By that time Rakesh was dead.

Then there is the story of Kawalzia came to the small town of Bispohar Bazar in the eastern district of Siddharthnagar, some 250 km from Lucknow, with her mother last month on a visitor's visa but decided to get married to her cousin Shamshad Ahmad. However, with lethargic bureaucratic ways coming in the way of a visa extension, Kawalzia has been told by the Indian authorities to leave Bispohar Bazar latest by Monday, failing which she would be deported. The Times of India reports blithely that Siddharthnagar police chief P K Srivastava said the proper procedures would have to be followed. "We cannot help it. We must follow the entire drill and carefully verify the marriage before submitting a report. All that is bound to take time," Srivastava said.

These are the stories that we can identify with which is why every encounter with the government is a moment of dread because delays – of smaller or bigger magnitudes are almost inevitable. But what of the other delays that we read of and which affect not one or two families (though in a welfare state set up, even that is unforgivable)? Reflecting rules of business inherited from colonial times that are wrapped up in opacity, the government trusts no one and suspects every one. The government like Caesar’s wife is meant to be above suspicion but is not as skeleton after Skelton keeps tumbling from the cupboard.

But since Caesar’s wife cant be probed Caesar taking shelter under systems and rules of procedure rather than the public good. The efficacy of a government – the measure of its governance ought to be measured (and usually is) by its impact on the public welfare. But in India, governance is not about welfare of the people – it is all about the (“i) being dotted the right way and the “(t) being crossed the right way and by the right people in he right sequence. And as indefatigable keeper of the Law, the bureaucracy tells us in the words of P.K.Srivastava, the Police Superintendent of Siddharthnagar “All these things take time”. Srivstava may be heading a district named after Gautama Buddha but compassion apparently hasn’t yet penetrated the police dictionary.

The Bible teaches about the necessity of law in a society to regulate society and to device norms that are beneficial to all and the common good can be pursued. But while describing God, he is described as the God of all grace whose mercy and compassion if need be overrides every law that might have been made. Law in our society we see plenty of. But in a society where the government rules as the mai baap, democracy not withstanding, people like Kawalzia and Shamshad Ahmed and every common man and woman would yearn to taste a bit of grace.

Cancer Patients: dying a thousand deaths

In spite of the advance of medical sciences in many fields , cancer is an area where in spite of a lot of progress , things haven't changed much on the ground. The patient still usually has to go through a prolonged treatment and at the end of which there is nothing called a cure in most instances. What you get is a stage of remission usually and even when you are in remission you are always looking over your shoulder to check for recurrences and in the many cases I have known , sooner or later cancer seems to catch up with you and more often than not , the prognosis progressively deteriorates.

Added to that is the burden of cost. Cancer treatment has always tended to bes expensive for several reasons – the treatment is prolonged for one , the treatment is also not available every where – typically the cheapest treatment available would be in the handful of regional cancer centers run by the government and the travel itself is fraught with costs and logistical expenses.
In spite of the fact that cancer strikes all sections of society and only perhaps lung cancer is associated with a clearly defined high risk behavior , which means that not much preventive measures can be really taken, the disease suffers from neglect. Conditions like HIV and AIDS which have got vocal activist groups taking up the cause of treatment care are able to garner funds from both the government and international philanthropic donors but cancer patients are not so lucky.

Apart from the fact that the very diagnosis of this disease spells worries for a cancer patient’s family, what hits even harder is the exorbitant amount of money charged by the pharma companies for the drugs that are crucial for a cancer patient’s survival at an advanced stage. Till recently the fact that Indian pharmaceutical companies reverse engineered many of the drugs and made them available at comparatively cheaper prices made them some what accessible.

This climate is slowly changing. The newer and more effective drugs which a patient would reach for tom try and prolong life or alleviate symptoms are also the most expensive and the changing patent laws in India more or less make them inaccessible. To cite an example , the multi national Novartis had filed a case in the Madras High Court, challenging the clause of the Indian Patent (Amendment) Act, which does not grant patents to medicines that are new forms of an existing drug or are “ever-greened” rather than being innovations. The patents office in Chennai refused to give patents to Novartis’ leukemia drug Gleevec on the grounds that it was “ever greened”, in February 2006.

Till the litigation in the Chennai patent office, many well known Indian forms were manufacturing the generic product end selling it for a fraction of the multi national's own product. However with Gleevec now having gone into litigation and the patent laws changing their color in conformity with trade laws , many firms have quietly stopped producing the drug. They do not want to invest in a contentious product without the law having been settled. This means that leukemia patients , who could have befitted from the generic versions of Gleevec, now have to purchase the hugely expensive product from Novartis or go without it..... or take the potentially explosive route of purchasing he drug by selling off home and hearth and eventually becoming bankrupt- a scenario by no means uncommon in India and in situations far less prohibitive than cancer.

Even the modified and much harsher patent laws of today which protect the interests of the producer than the consumer provide for the government to suspend the laws of patent and produce drugs generically if in the instance of a public health emergency. But in spite of the fact that cancer is one of the three top causes of death in the country , the government has so far looked the other way and not acknowledged it to be so. Although HIV and AIDS has received the attention it deserves and more there are other pressing public health needs which have not received their due attention. And mean while cancer patients and their families suffer a thousand miseries in their life time facing the burden of expenses and disease that they do.