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MEDICARE

“Because they weren’t blinkered bureaucrats or doctors, not only people with end-stage disease but also people with chronic diseases were chosen for palliative care.”

Photo: Vipin Chandran

The hope of comfort: Dr. Robert G. Twycross.

Is hope a wrong word for terminally ill patients? Dr. Twycross doesn’t think so. “Hope runs right through palliative care”, he says. “It is not hope for cure, not hope for survival, but the hope of comfort. It is the hope of not being isolated behind a conspiracy of science”. Everyone fears death. In most countries, society tends to turn its back on a mortally sick person. “That is a terrible form of exclusion,” he says.

However, palliative medicine has been responsible for people wishing to continue to live till a terminal illness takes its natural course, says Dr. Twycross. “Palliative care demands high levels of skill in communication for enabling a patient to express fears and concerns, and putting them in perspective, giving them goals too. They may be dying. But one has to convey the feeling that their life can still be comfortable. By giving them goals in terms of pain and symptom management, you give them hope — because the essence of hope is to have a realistic goal to aim at. To give them the hope of having comfort, the hope that people will continue to care for you and respond to you with a dignity of human being. Hope permeates through palliative care”.

Clarifying the two different fields of palliative care and euthanasia, Dr. Twycross says that the basic philosophy in palliative care is to help people live as best as they can till they die. “The use of medicine is not to make a patient die abruptly. But, to ease the pain and provide them stamina to allow them to live their lives …” Palliative care is a distinct philosophy from euthanasia. The attitude is completely different, says Dr. Twycross. Some countries have mixed euthanasia with palliative care, like Netherlands and Belgium. Netherlands got to euthanasia before palliative care. But, as they trained more doctors in palliative care, the need for euthanasia has become less and less. It is the ultimate, desperate option.

“My friends there tell me that there will always be a very small minority of patients who say I want euthanasia. If you offer palliative care, and if it is good palliative care, that proportion will shrink. Palliative care, judging by the Netherlands experience, doesn’t totally does away with euthanasia, but it almost obliterates the need to consider euthanasia as the ultimate option. We are looking at life until you die, relieving suffering with good pain management, good symptomatic treatment whereas the euthanasiasts give a deliberate overdose to end life abruptly there and then. If you’re working at the bedside, you got no doubts about the difference between the two.”

Dr. Twycross, scaling down his own achievements in palliative medicine that helped it become part of medical colleges, said that if there were more charismatic leaders like the late Dame Cecily Saunders who started the Hospice and palliative movement with St. Christopher’s Hospice in 1963, things will change. It took more than 20 years, for palliative medicine to became a part of medical study and treatment, in 1987. According to Dr. Twycross, “She transformed the way we look at death and dying. She transformed the care and treatment of the terminally ill.” He had met Dr. Saunders in the early 1960s as a medical student. “Her vision for holistic care for those who were nearing the end of lives inspired me.” After he completed his post-graduation in general internal medicine, he joined her in 1971 at her invitation to do research in therapeutics.

Though palliative care emerged as an offshoot of providing treatment to incurable cancer, there are many patients with other terminal diseases who are given relief from pain. “The focus is mostly on incurable cancer”, says Dr. Twycross. “We know when they are beyond cure. But, even at the beginning, we had a few other patients with end-stage neurological disease. But now, of course, doctors recommend palliative care to all patients with any disease that it is clearly life limiting.” In the U.S., for example, over 50 per cent of all palliative care patients have a non-cancer diagnosis.

Eighty per cent of all palliative care in India is in Kerala. According to him, there are about 20 lakh patients in India needing palliative care. In most other States, this branch of medicine is yet to take root. In some States where it has started, they are where Kerala was 10 years ago, says Dr. Twycross, who has been a guide to palliative care in India that took root in 1993 with a clinic attached to the Kozhikode Medical College. The Institute of Palliative Medicine grew in structure and nature, giving shape to the Neigbourhood Network in Palliative Care that is deeply embedded in the community. Predominant in North Kerala, the network, with 7,000 patients and 5,000 volunteers, is now seeking to spread down south, says Dr. Suresh Kumar, Director of the Institute of Palliative Medicine.

When doctors who get trained in palliative care go back to their own place and try to run such clinics, they achieve only about 25 per cent coverage. About six years ago, when this group of trained doctors got together, they decided to move from the medical-dominated palliative care to something that was more community oriented. This was the beginning of the Neighbourhood Network.

As Dr. Twycross put it, “Because they weren’t blinkered bureaucrats or doctors, not only people with end-stage disease but also people with chronic diseases who would live 10-20-30 years, people who had fallen off a coconut tree, with paraplegia or chronic diseases like sickle cell anaemia, strokes etc., were chosen for palliative care. Palliative care was embedded in the community, by the community. Because the community said these people deserve the same kind of care as the cancer patients and the emerging AIDS patients, you got a much broader range. It is the volunteers who give the basic psychological support to the family of the patients and then report back to the clinic which meets once or twice a week. And if necessary the patient is seen by a trained doctor or nurse. The Kerala experience is essentially unique because of its mix of culture, unique political system and tradition of good volunteering work.”

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