RAMYA KANNAN
Palliative care’s viability cannot be judged by commercial models, say experts who look at the current scenario in Chennai.
There is an increasing number of advanced diseases, beyond curative stage, that need care. About 80 per cent of cancer patients come for treatment in the advanced stage. This is a burden to hospitals, as there is a shortage of beds for such patients. These patients also need a multidisciplinary team and constant care. Modern palliative care centres are not homes for the dying. They take care of patients with the complete medical team, psychosocial workers, physiotherapists and counsellors, to improve all-round quality of the patient until the end comes.
Not enough
In India, there are around 72 Hospices with the south accounting for over 67 per cent. Considering the incidence and the demand, there is a long way to go.
Apart from this, there are problems palliative care specialists like us have to contend with every day: Non-availability of morphine and other relevant palliative drugs; lack of professional education and therefore, professionals in the field; lack of adequate training in syndromic management of chronic diseases, particularly for medical officers; lack of resources to train health workers in needed numbers; lack of public awareness on the subject; lack of proper understanding of policy issues relating to care of terminally ill or cancer pain relief and the general fear that use of opiod drugs may encourage drug abuse.
The government has to have a more rational policy on morphine usage and its availability for palliative care providers. The current regulations make it extremely difficult for patients to get access to medication for the management of pain.
Indian health insurance companies too need to recognise palliative care since it has significant cost savings without compromising on the care provided to patients.
There is a huge demand-supply gap in healthcare infrastructure which makes it very difficult for hospitals to cope with the demand for beds. The cost of care delivery is also on the increase. Healthcare service providers need to recognise that palliative care is one way of ensuring that the terminally ill patients get better quality care with significant reduction in costs.
Most importantly, palliative care is a social need and cannot be evaluated based on the conventional, commercially viable models. There is a need for subsidies by way of free land and financial support to establish more palliative care centres. The benefits of establishing more palliative centres is that we will be able to provide focused care for the chronically and terminally ill patients at the hospitals, and there would be more beds available for patients who need curative care.
Dr. Republica Sridhar, RMD, Pain and Palliative Care Centre, Chennai.
It began in 1991, when we took in an old man who was lying in the gutter and started our home for the destitute elderly. Since then, 64 people have died here and six of them, of cancer. More recently, we took in a Nepali woman with cancer and in grea t pain. Her cries of pain disturbed others in the senior citizens’ home and we found we could not provide her medical care.
A couple of my students are oncologists at the Adyar Cancer Institute (WIA), so they helped out initially, but looking at our numbers, they suggested that we set up our own palliative care centre, providing the range of facilities for people who are terminally ill.
The facilities for palliative care are better in Kerala. We were looking for nurses and finally, chose two people and sent them to Jeevodaya for training.
Fr.V.V. Paulose, managing trustee, St.Thomas Charitable Trust.
(Fr. Paulose is currently involved in raising funds to set up “Abhayam”, a palliative care centre.)
As far as palliative care in India goes, there are serious issues in the areas of awareness, education and training.
Firstly, no doctor wants to work in a palliative care set up — not only because there is no money involved in it, but also there is nothing much the doctor can do, curatively. So palliative care is the last of the specialities one chooses. There are a few correspondence courses and certificate courses that are being offered, but we are looking for an inclusion in the medical curriculum.
Strangely, India is the third largest producer of opium and we have problems getting our hands on the drugs. While availability of oral morphine has been made simple with the amendment of the Narcotic Rules, there are still problems with procuring injectible morphine.
It is key in the management of the terminally ill, whose pain, on a scale of 0-10, will be at 8, 9 or 10. Relieving pain is paramount and only morphine can do it. With morphine and palliative care, patients can live a fairly long while with a tolerable quality of life. Again, morphine is not available at the Primary health centres and at district-level government hospitals, leaving the rural areas nearly bereft of any palliative care facilities. We are struggling to raise funds to set up institutions in rural areas.
There is also the issue of the “point of crossover” — when does one move from curative to palliative care? It is a point of debate with doctors. When people come in at end stage when no treatment can help them, it would be better if doctors and family members realise that the patient has entered the palliative care stage and provide that kind of care.
Social stigma
Stigma continues to be huge. There was a case where a husband thought his wife’s cancer was contagious and isolated her at home. We have also known of a family where the girl’s marriage was called off when the groom’s parents found the father of the bride had cancer.
We get very little support from the government, raising our funds largely through public donations. Our expenses are huge — salaries, fuel for transportation (home care), morphine, blood and blood products and other medical consumables. The service we provide our patients is totally free, though some people pay for buying consumables.
Deepa Muthiah, Dean Foundation
The biggest need of the hour is to recognise palliative care as a specialisation — an MD Course. It has to be incorporated into the medical syllabus and we are meeting with the Indian Medical Council to incorporate the basics of pain management and general psychiatric counselling in the medical curriculum. It is also important to bring it into the nursing curriculum.
Through the Chennai-based Lakshmi Pain and Palliative Care Trust, we are conducting courses in palliative care, for batches of 20-25 at a time. In Tamil Nadu, we have already met the Health Secretary and he has given us the go-ahead to start a training course at the government hospital. We are soon going to begin an eight-week course, with 10 days clinical training at Government Royapettah Hospital, for MBBS graduates.
Mallika Tiruvadanan, National Secretary, Indian Association of Palliative Care and advisor, Chennai Association of Palliative Care
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