Till the end...

The mission is to improve the quality of life and ease the pain of dying patients. With an increasing number of people battling advanced diseases and just three palliative care units in the city, a palliative care policy in Maharashtra is the need of the hour
Shobhnath Kahar (60) had lost all hope, when he was referred to the palliative care unit at the Tata Memorial Hospital in Parel. Kahar, battling head and neck cancer is in his terminal stage now. Kahar had to go through chemo and radiation therapy, "a painful procedure," he said before the doctors advised him to forego any more radiation therapy as, "it was of no use."

Care: A picture of the late Princess Diana (R) with John Collins, a
51-year-old lung cancer patient at Northwestern Memorial Hospital's
Hospice- Palliative Care Unit in Chicago, File Pic/AFP

Detected with cancer six months ago, there was nothing much the doctors could do. "The cancer had already spread by then. I was losing my voice. The doctors suggested that I go through a surgery, where they would place an artificial voice box. After the surgery my voice was going to change. I knew that the surgery would be both painful and expensive. The doctors told me that it was a temporary measure," said Kahar.

This was five months ago. "For the last one month, Kahar is with the palliative care unit at the Tata Memorial Hospital in Parel. Since his condition is incurable, he is on palliative medicine. When he has pain, we give him painkillers. When he has digestion problems, we give him tablets to stimulate his digestion," explained Dr Maryann Muckaden, Head of the Department (HoD) of the palliative care unit at Tata Memorial Hospital. "The pain has reduced now with the treatment. I also get free medicines and sometimes money from the place," said Kahar, who has come to accept the fact that his condition is incurable. He said, "If that is what God has in store, I will have to accept it."

Urgent: Dr Maryann Muckaden, HoD of the palliative care unit at Tata
Memorial Hospital

The aim of palliative cure, as Muckaden elaborated is, "to improve the quality of life for patients with 'life limiting' conditions, where the condition of the patient will continue to deteriorate within days, months or years.
Some suffer from cancer; others suffer from lung, heart or nerve conditions. Some even have HIV. In
Paediatrics some conditions are cerebral palsy, thalassemia, HIV, etcetera. These are cancer and non-cancer conditions where ultimately the patient would succumb to the disease. A team of doctors, social workers, nurses, counsellors, psychiatrists, volunteers offers 'Holistic Care' which involves physical, psychological, social and spiritual care for patient and their family through the disease trajectory, to make the dying process as comfortable as possible."

Not only does it help the patient to deal with the condition better, "it also helps them to plan the rest of their lives in order to get the most out of the time left. It helps the family to accept the situation and plan the immediate future. It helps them through the 'Stages of Grief'. It helps them to accept that there is no point in throwing away precious resources if there is no cure. The judicious use of palliative care can save a lot of spending on health when it is futile," added Muckaden.

Treatment: Dr Sunil Dhaliwal examines Shobhnath Kahar, a patient at
the palliative care unit at the Tata Memorial Hospital in Parel, Mumbai.
Pics/ Pradeep Dhivar

Unlike in the US and Europe, palliative care is still at a nascent stage in India. Mumbai, where cancer incidences and terminal illnesses are on the rise, has a few palliative care centres. In Mumbai, there are two units at the Tata Memorial hospital. One unit is for adults, the other unit is for children. Sion hospital too has a palliative care unit for HIV kids. Said Dr Pradnya Talawadekar, country coordinator for the Indian Association of Palliative Care (IAPC), "There are very few palliative care centres in Mumbai and Maharashtra. Tamil Nadu has 13 centres, Kerala has more than 100 such centres. Kerala is the only state that has the state palliative care policy. There is a definite need for every hospital in the country to have a department of palliative care services. Doctors and health care professionals need to be trained. Palliative care is not included in any medical curriculum, though the Medical Council of India (MCI) has agreed to introduce it as a post-graduate course this year. The biggest hurdle is lack of awareness." Agrees Dr Manjhiri Dighe, a paediatrician who takes care of the children palliative care programme at the Tata Memorial Hospital, "The subject has to be brought up before the state legislature. Only then can we see some positive changes in the palliative care sector."

When asked if the government was looking into the proposal, Maharashtra Health Minister Suresh Shetty said, "The decision of a policy has to be taken by the Medical Education department. As far as making palliative care a compulsory part of the medical curriculum is concerned, we have forwarded it to the Directorate of Medical Education in Nashik. The decision has to come from there."

Taare zameen par: Sachin Tendulkar talks with a group of child cancer
patients at an event organised by the Cancer Patients Aid Association in
Mumbai. File Pic/AFP

Many think that there is lack of commitment from both professionals and government authorities as far as palliative care is concerned.

Said Dr Muckaden, "Maharashtra is lagging because we still do not have a critical mass of people to carry this effort forward. The Maharashtra chapter of the Indian Association of Palliative Care with the Tata Memorial Centre is committed to training faculty in medical colleges across the state for under and postgraduate training all over the State. But a week long workshop will not serve the purpose. Palliative care as a subject should be made part of the curriculum. Money is another factor. Unlike other specializations, there is not enough money one can earn in this sector. Hence, most medical students are not interested. We too are short staffed."

Dr Namrata Peswani, currently pursuing her fellowship in oncology and palliative care rightly points out the connecting link between the two fields. Said Peswani, "As an oncologist, when you fail to cure a patient, you just have to let him go. Whereas, I as an oncologist wanted to continue the journey with my patient till the end. Palliative care will help me do that, once all the treatment options are over."

Doctors are also taught how to break the news to the patient or his family. Added Peswani, "This is where the
cultural difference between the US and India comes to the fore. In India, the family is informed first about the condition of the patient, whereas in the US it is the patient who is informed first. It is his decision that the doctor has to abide by, when it comes to informing his family." The treatment of a patient using palliative care involves medicines, which can be used to lessen the pain as well as counselling sessions.

"Sometimes, patients are forever in a state of denial. Our counsellors speak to them and help them accept the truth," said Dr Sunil Dhiliwal from the palliative unit. Since most patients are outdoor patients, the team visits patients at home. "For the underprivileged, we provide free medicines and ration," said Muckaden

Volunteers who are trained to counsel the patients have diverse backgrounds. A former mechanical engineer by profession, Niranjan Parikh (74), who currently works as a volunteer with the palliative unit at the Tata, said that counselling is a tough job.

Recollects Parikh, who has been associated with the unit for more than 15 years, "I vividly remember this incident, when a girl in her first year graduation was detected with cancer. As a counsellor we try and help patients through art therapy, so I asked that girl to draw something. She drew a picture of a girl who was holding an ice cream. On the ice cream she had written �life is too short, eat it before it melts. My job as a counsellor is to help patients deal with their condition better. But I have learnt a lot about life from patients who know that the end is near."

Another counsellor, Sangita Inamdar (42), a former lecturer, devotes one day of the week for counselling. "I sometimes go and meet patients at home, but I don't have the courage to deal with children. Hence, I only counsel adults," said Inamdar.

What is palliative care?
w Palliative care is a specialised area of healthcare that focuses on relieving and preventing the suffering of patients. The aim of palliative care is to improve the quality of life for patients with 'life limiting' conditions, where the condition of the patient will continue to deteriorate within days, months or years
w Palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases.
Palliative medicine utilises a multidisciplinary approach to patient care, relying on input from physicians, nurses, social workers, psychologists, etcetera, in formulating a plan of care
w This approach allows the team to address physical, emotional, spiritual, and social needs of a patient

w The patient and family can come to the outpatient unit at the Tata Memorial Hospital any day and register
w A team of doctor, social worker, volunteers, counsellors visit the patient from time to time

w Adoption of palliative care policy by the government
w To impart training and awareness to doctors, nurses, social workers, health care professionals, volunteers, NGOs in knowledge, attitude and skill base to deliver supportive care to patients

Kerala has the highest number of palliative centre in India:
Kerala: 177
Tamil Nadu: 13
Andhra Pradesh: 3
Maharashtra: 3

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