When terminal disease ravages the body, palliative care can bring relief from pain
“I want to live to see my daughters married. Who will take care of my children if I die?,” asks Gowramma Amaresh even as she chokes on the last few words, overcome by emotion.
Suffering from an advanced stage of oesophagus cancer, the 51-year-old Raichur native is now at the Palliative Care Unit of the Kidwai Memorial Institute of Oncology. She is one of the 20 in-patients here.
Ningamma (70), crippled by cervical cancer, does not even know that her days are numbered. “Nanage ee novu kammi aadare saku (All I want is relief from such pain),” she manages, pointing to her lower abdomen.
Doctors and support staff at the Palliative Care Unit of the hospital know death is round the corner for most of the patients as they are all suffering from an advanced stage of cancer.
Palliative care concentrates on reducing the severity of disease symptoms rather than strive to halt, delay or reverse progression of the disease itself or provide a cure.
It gained momentum after the advent of the modern hospice concept in the United Kingdom with the founding of the St. Christopher's Hospice in 1967 by Dame Cicely Saunders.
“The goal is to prevent and relieve suffering and to improve the quality of life for those facing serious and complex illness. Palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment,” said K.B. Linge Gowda, Head of the Department of Palliative Care in Kidwai.
With nearly 2,500 new patients coming to this State-run institution for treatment and more than 10,000 for follow-up, palliative care is of utmost importance.
The magic hug
To put it simply, palliative care is to compare it to the lead character of “Munna Bhai MBBS”. Instead of the “jadoo ki jhappi” offered in the film to a cancer patient, doctors here use a whole range of holistic tools such as managing the patient's physical symptoms, emotional distress, social and spiritual needs and also helping the families to cope with the stress of illness. Care is not only provided at hospital but also even at the patient's home.
While there is a misconception that palliative care comes into the picture only after the disease has gone beyond the limit, experts say it should ideally start at the time of diagnosis as far as pain relief is concerned.
“With the National Human Rights Organisation declaring that freedom from pain is one of the most important human rights, palliative care is aimed at relieving the person of pain,” said Nagesh Simha, Medical Director of Karunashraya and chairperson of Bangalore Hospice Trust that runs the centre.
With most cancer patients in India reporting late to hospitals (at an advanced stage), they would have been eligible for palliative care at the time of admission itself, he said.
Palliative care starts with managing severe pain and the most effective method is administration of oral morphine.
Only a few hospitals and non-governmental organisations (NGOs) in Bangalore have palliative care units. While St. John's Medical College and Hospital, Baptist Hospital, HCG and Narayana Hrudayalaya's Mazumdar Shaw Cancer Centre apart from Kidwai offer the facility, Karunashraya offers the most comprehensive, complete and all-round care. There are other organisations such as Snehadan, which offer palliative care for HIV+ patients. All of them refer chronic and needy patients to Karunashraya.
Karunashraya is a 50-bed, free, round-the-clock facility where the philosophy is to value life until death.
“We do our best to give the dying patients a peaceful and dignified end,” said Dr. Simha.
Dr. Simha, who also heads the Indian Association of Palliative Care, said not even one per cent of those who need palliative care are attended to in India. This is because of “bureaucratic red tape in the procurement of morphine”, he said.
Citing examples of how palliative care can help, Sadanand Gopal, Medical Superintendent of Karunashraya, recalled how a six-year-old patient often spoke about his passion for planes.
“He wanted to sit in a real plane. So we arranged it. He was so happy … he died 48 hours later,” he said.
With 37 nurses and three doctors on duty round-the-clock, Karunashraya has at least three admissions every day.
“There is never a waiting list because so many of them succumb to the illness. We see at least 35 to 50 deaths a month. The average stay of any patient at our facility is 10 to 15 days,” Dr. Gopal said.
Not all patients are aware of their condition. “In such situations, we counsel the patients and family members to help them accept reality,” Dr. Simha said.
Shobha Nair, Head of the Department of Palliative Care Unit at St John's Medical College and Hospital, said that palliative care is not just for cancer patients. “It is appropriate for all incurable diseases such as HIV and chronic neurological problems,” she said.
Like Kidwai and Baptist Hospital, St John's offers free day care and home care services. “We charge only for the wards,” she said.
Experts said that the main barrier in palliative care is non-acceptance of the methodology by doctors themselves. “Although the concept is not new, most physicians have traditionally concentrated on trying to cure patients.
Treatments for alleviation of symptoms are viewed as hazardous and seen as inviting addiction and other unwanted side-effects. Some doctors also take it as a personal defeat if they are not able to provide the cure.
“For some medical and surgical oncologists, palliative care comes secondary. But soon patients start demanding pain relief. World over, there have been instances where patients have sued their doctors for not providing pain relief,” said Dr. Simha.
Naveen Salins, Consultant Integrative Oncology at HCG, said that lack of awareness was the main problem. “But it is important for integration of medical oncology and palliative care to provide holistic treatment to a patient,” he said.
Karunashraya, on the HAL Airport-Varthur Main Road in Marathahalli, can be contacted on 28476133 / 28476509 / firstname.lastname@example.org