‘We have set up palliative care centres in 8 districts’

Civil Society News, Hyderabad

Telangana has become a frontrunner in State-supported cancer treatment by opening palliative care centres in eight districts in partnership with the Pain Relief and Palliative Care Society since 2017.

Earlier, in 2007, the government-run MNJ Cancer Institute partnered Two Worlds Cancer Collaboration, a Canadian NGO, to set up a palliative care facility at the institute in Hyderabad.

Palliative care is generally neglected though it is an essential part of cancer treatment. Funds exist for palliative care under the National Health Programme, but go unutilised because of ignorance and lack of medical training.

Civil Society spoke to Dr Gayatri Palat, an anesthetist and director of the Palliative Access Programme, about the centre at the MNJ Institute and the outreach in the eight districts. 

Palliative care has not received the emphasis it should. How did your programme attract the interest of the state government?

My programme started in 2006 when I first moved to Hyderabad and we formally began working at the MNJ Institute of Oncology, which is run by the government and serves as the Regional Cancer Centre. In 2011 the Telangana government gave official recognition to this programme. It is now called the Department of Pain and Palliative Medicine and it has a proper faculty which is a big thing for us. 

Are you here in a government capacity?

I work for an international NGO called Two Worlds Cancer Collaboration, which is based in Canada. We approached the management of the MNJ Institute and they were very open to the idea. We got into an MoU with the government and the palliative and cancer care programme was established here. I work in the government system, and this is due to the good vision of the management. But I also network with other NGOs. Working with the government is very helpful especially for advocacy and policy.

A lot of things have happened in five years. Slowly, the state government started recognising the importance of medications like morphine, a crucial component of palliative care, especially for patients of cancer. It isn’t easy to get morphine in India because of stringent regulations. The government has been concerned that it will be misused, but rules have been so strict it hasn’t been available for medical use and patients have suffered.

But that is now changing because we worked with the government of united Andhra Pradesh, amended the regulations and made morphine available for patients. We are now one of the few centres in India where medications like morphine are available and we undertake training, research and clinical work.

But you also do outreach through another NGO?

Yes, the Pain Relief and Palliative Care Society, which does outreach. I formed it in 2007 with like-minded people. We have a 24-bed hospice for palliative care in Hyderabad and we collaborate with the state government to run palliative care centres in eight districts.

While I was working with cancer patients in MNJ I realised that almost all of them over a period of time would become very sick and could not come to the hospital. They would suffer at home and die.

If I sit in this hospital then, yes, I am catering to some patients but I am not reaching the people in the community. That’s why I formed the Pain Relief and Palliative Care Society, for outreach. 

So now we have two NGOs and the government working together to provide palliative care within the hospital and reaching out to people in the community.

How many patients does your palliative care centre in MNJ handle?

For palliative care we see on average 70 to 80 patients per day. They come to our outpatient service. There is no other hospital offering this service. Our outreach provides home care. We have five vans going to different parts of the city with a team of doctors, nurses and counsellors trained in palliative care. They take care of patients in their homes. Most patients want to be at home and die at home, given the choice.

How many patients do you manage to reach in their homes?

Because of the traffic and distance we cater to four to five patients each day. We have five vans so that would work out to 20 to 25 patients per day, six days a week. It’s not enough and there is a lot of scope to expand. Most of them are cancer patients.

We don’t really cater to the population of non-cancer patients with end-stage diseases. A few approach us, mostly through word of mouth. The major chunk of non-cancer patients has neurological and geriatric problems. There are people afflicted with paralysis, stroke, dementia and old age-related issues. They all require palliative care at some point of time. We hope one day they will all have access to palliative care.

Your MoU with the government dates back to when?

In 2011, the central government set up a programme for palliative care for which they earmarked funds. In 2017, a National Programme for Palliative Care (NPPC) was started, a landmark move. It recognised palliative care as an important part of the health system. The centre encouraged states to utilise that fund to develop their own palliative care system.

It is a need-based fund. They are keen to fund district-based programmes, not big public hospitals. They are saying, decentralise and go to the districts and we will give you money. The funds are for infrastructure, human resource, and patients. It’s a nicely planned programme.

The state government applied for the grant from the central government through the National Health Mission and it was lying unused. MNJ was approached. They involved us and the Tata Trust. So the government of Telangana, the Tata Trust, MNJ Hospital, and Pain Relief and Palliative Care Society came together and brainstormed on how we could use this grant.

In October 2017, our NGO signed an MoU with the state government to roll out a district- based programme in Ganga Reddy district. We established an in-patient facility and a home care programme.

In the first phase, from October 2017 to October 2018, we thought we would just set up eight centres across the state depending on the patient population. We did a need-based assessment before deciding on which districts to choose.

How does each centre work?

We have an in-patient facility with eight to 10 beds within the district or in the area hospital along with a home programme. If patients are critically ill they come to the in-patient facility where they get good end-of-life care. The state government has set aside really good funding for human resources so we have a dedicated staff of doctors, nurses,  physiotherapists, ANMs and drivers. Each centre has a staff of 14.

MNJ Hospital provides intense training for six weeks to staff and sends them back to the districts. The NGO’s role is to select the staff, oversee the programme and ensure quality. We connect with all eight centres to make sure they are functioning smoothly.

Where do trainers come from?

I have a local team of doctors and nurses who are trained. We have a very senior faculty. We also invite national faculty and they actually volunteer to go and stay in the district facility and spend time handholding the team. We also have international faculty coming here, looking at how to improve quality. Two Worlds supports the NGO with a grant for faculty. 

How much does it cost to run each centre?

Each centre costs Rs 3 lakh per month. We have 31 districts in Telangana. If you want a centre in each district it will cost just Rs 11 to 12 crore a year. That’s all. And we reach out to the people.

Our eight centres have 64 beds. Our home care team has done 500 visits every day. Palliative care is not a very high-cost specialty. The cost is mainly in human resources. Medicines are inexpensive, though they may be difficult to procure. The more human resources you have, the better the quality of care.

And this money is available from the central government?

Any grant from the central government is in proportion — about 60:40. But the state government is saying, we will not limit your funds. If you are doing it in all districts we will give you the money. They are very receptive. They all feel for the cause. We are talking about suffering, about death and dying. It touches a chord.

Who pays the doctors?

We go by government standard norms. We are paying a little more than what regular doctors are paid. They are all working in the districts. We have a centre in Adilabad, one of the most remote districts in Telangana. We have a young enthusiastic doctor working there and five excellent nurses.

But doctors and nurses don’t like to work in remote areas. How do you get quality people?

When we rolled out this programme, that was our biggest concern. Surprisingly, I am getting doctors. For one centre, four doctors came for the interview. We do give them an assured salary which is paid on time. In each centre we provide good quality furniture and a good ambience. These gaps are filled by the NGO.

How much would a doctor in your remote centre be paid? Are they young doctors?

A young doctor on average in a government facility would be paid Rs 40,000. We pay them Rs 60,000 as a starting salary. We leave scope for a yearly increment. They should be happy otherwise we cannot retain them. In four centres the doctors are quite senior. In the other four we have younger doctors. They may pursue higher education and leave. I encourage that.

Do they have any specialisation in palliative care?

No, they have no clue. Most are MBBS doctors. I have postgraduate doctors because we do a lot of training. Initially, they don’t come seeking to work in palliative care. They just come looking for a job but when we enrol them and they undergo training, they feel motivated. The doctors in our centres say that if they can do their postgraduation in palliative care they would like to continue with this specialty.

What about medications?

In almost all eight centres we have managed to procure opioid medications. For any good pain relief programme, especially a cancer programme, you have to have opioid medication.

In India this is a big issue. India is only one of two countries that legally cultivates opium and exports it to the rest of the world for pain relief. Yet, in our own country less than one percent of the population has access to pain relief through morphine and related products because of stringent regulations.

Since we have morphine in all our eight centres, a patient in a distant place like Adilabad doesn’t need to come to Hyderabad to procure it. He can get it at the Adilabad district hospital.

The other problem is lack of education and training. Training in palliative care is not part of our medical education. It is a big gap and patients suffer. In the absence of training, physicians fear administering morphine and other opioids because they are addictive.

So legally you can get it? But it is not used because of lack of training.

Yes. In 2015 the Government of India amended the NDPS Act. States cannot decide that they don’t want to use opioids. The law is uniform across the country now. Clear instructions on how to procure medications like morphine and how to dispense them are laid out. You have to follow certain protocols. Yet, in most states we don’t have access to such medication. You need to demand supply. No demand is due to ignorance.

But is that enough to formalise palliative care?

The government’s National Health Plan 2017 clearly includes palliative care as part of their official health strategy. It says every health and wellness centre at primary health level should have palliative care, along with health promotion treatment and rehabilitation. It’s official. We have arrived. It’s just that we don’t know how to implement it. It should be part of the mainstream health system. When you talk about medicine, surgery, cardiology you should also include palliative care.

So why isn’t it like that?

Ignorance. Our doctors graduate without learning about palliative care. The Medical Council has not revised the curriculum.

So you managed to make morphine and its equivalents available in all eight centres?

Which, I think, is very significant and exciting in the palliative care world. The other thing which our health administration has done is to involve the local administration in this planning process. When I go to any district to set up a programme, I meet the collector.  He decides the infrastructure the administration is going to provide.

Even if the central commissioner changes, the collector is involved. The local administrations have gone out of their way. I have a WhatsApp group of all the collectors and I message them on any issue and they interact with me directly. This is an amazing response. It’s a lot of hard work.

When we think of cancer we think of chemotherapy, radiation and so on. Is palliative care a part of cancer treatment?

This is a very pertinent question. Why does a patient come to hospital in the first place, often before the first diagnosis? They have a symptom, a swelling and pain. So when they come to hospital and undergo investigation and get the devastating news that they have cancer, no support is given. 

Throughout cancer treatment they get no support. Only when everything is over and you are referred to palliative care, you start getting good medicine for pain, good supportive care, good counselling, handholding.

That is not the internationally accepted model. They say every patient diagnosed with cancer from day one must be given the choice of seeking palliative care. Palliative care is not end-of-life care. Even after a cure survivors have fears and worries. Remission is a constant threat. We also talk about bereavement care. When you lose your loved ones you grieve and that process becomes very difficult. Our palliative care team extends bereavement support till they move on in their lives. So it’s a big spectrum we talk about.

Are you doing this in MNJ? 

When a patient is referred to us in our clinic we do a triage. We ask, do you want to continue to come to our OPD? Do you want to opt for home care or a hospice? Or do you want to go to the district facility? So now we can offer a choice to patients. With the kind of patient numbers we get, people do question the quality of care. We do worry about quality.

How many patients come to MNJ?

In a year we get 12,000 new patients. I agree this is not enough but at least we are doing something.