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.