‘Palliative care is integral to a caring health system’

Civil Society News, New Delhi

Medicines deal with diseases. But patients coping with pain or the loss of bodily functions need more rounded care to help them along. From administering morphine to providing compassion and empathy in periods of dark despair, palliative care is now being regarded as a specialty that cannot be ignored whether it is for cancer or strokes or crippling amputations and loss of bodily functions.

The challenge is to transform palliative care from being a boutique offering to integrating it with the main healthcare system.

The Telangana government has shown what is possible by opening palliative healthcare centres in each of the state’s 33 districts and making them a part of the health budget. It has institutionalized palliative care in the MNJ Cancer Hospital in Hyderabad. Doctors and nurses have been trained in large numbers and oriented to palliative care. Postgraduate courses are now available.

Dr Gayatri Palat, an anaesthetist, helms the district programme in addition to teaching palliative care at the postgraduate level. Civil Society spoke to her to find out how the programme has grown and matured since 2017 when it was started.

 

Q: You have been running palliative care centres for some time in Telangana. How extensive is the network of centres? For how long has this effort been on? 

We work with the government of Telangana and we have established a palliative care programme in every district of Telangana. We have 33 districts and we have an in-patient palliative care centre in each district together with supportive home-care services, which includes the availability of opioid medications, like morphine.

Now we are at a stage where patients undergoing treatment in Hyderabad in a major cancer hospital go back to their districts, either after treatment or in between, and we can always refer them to a district centre. And they will continue to get care and support from a trained team of doctors and nurses in the district centre closest to their homes. It will include pain relief with oral morphine. There will be no need to come here to Hyderabad for that. In this way we have provided universal access to palliative care in Telangana. 

 

Q: Is it one centre per district?

Yes. It’s a tertiary-level centre with in-patient quality care. And more work in the community by way of an extensive home-care programme. When patients are very sick, they move to the district hospital for in-patient care. But when they’re better, they go back to their homes and are supported by the home-care programme.

ASHA workers and ANMs at the Primary Health Centres (PHC) have been given some basic training. They have been told that if a patient is in pain and needs palliative care they should inform the palliative care team at the district hospital. And so, they link with the district hospital. It’s not that we have doctors specialized in palliative care in every PHC. Instead, the PHC doctors are trained in the basics of palliative care. And if they need help, they go to the secondary-level doctor. It’s a kind of network that we have. 

 

Q: And the palliative care centres are embedded in the state’s healthcare system?

That is the beauty of this programme and what makes it a very sustainable model. I don’t need to raise money to run the programme. It’s within the government health system. The government has officially established palliative care. We monitor quality at the state and district levels. There is delivery and monitoring as well.

 

Q: There must be a huge demand for palliative care.

There is a huge demand. Now that we have established the system between 2017 and 2023, our focus is on quality. In the public healthcare system, ensuring quality can be a big challenge. There will be some attrition of doctors and nurses and we will have to replace them with trained people so that the standard of the programme is maintained.

Secondly, we have to ensure that the programme is not just about patients with cancer. Even non-cancer patients who are terminally ill should have access to palliative care.

So, when you look at that spectrum of patients, it’s a huge number. Our next focus will be to expand the scope of work to reach out to all those patients through capacity building of the health system and a massive awareness programme. You’re right, if you look at the real numbers they are huge.

 

Q: And right now you are focused on cancer patients?

Right now, in the district centres, they’re doing full-blown cancer. When they go to the community, the proportion changes. Universally, of the people who require palliative care, 30 percent will be patients with cancer, 70 percent are patients with non-cancer conditions. It is also so in our programme. When they go to the community, as in the villages, and they see patients who are bedridden and terminally ill, the proportion is almost similar. Cancer is only 30 percent, 70 percent is non-cancer. Among the non-cancer patients, the most common are neurological conditions — stroke, cardiovascular conditions, especially among the elderly. There’s huge scope for expanding the access to care. 

 

Q: What is a palliative care team?

Typically, when you see a patient with any serious illness, they have a physical need and also a lot of psychosocial and spiritual distress. When you talk about delivering palliative care to such patients, the need is not just physical, it’s a huge need. The suffering is beyond physical. You need a multi-disciplinary team. It’s not just about having a doctor. The doctor’s role is, I would say, maybe 25 percent of what the suffering is about. You need doctors, nurses, counsellors and social workers to help with mental health issues. A physiotherapist is needed for rehabilitation.

Suppose you have a patient with tracheostomy. You need to live life with tracheostomy. You need an occupational therapist and a speech therapist. And then you need volunteers because when they go back to their homes they need to live as normal a life as possible.

 

Q: You must now have a very large network of people. What would your pool of talent in palliative care be like?

If you look at the health workers trained — not in just some one-hour class, I’m talking about detailed training — the numbers are huge because in each of the 33 districts there are five nurses, one doctor, one physiotherapist. In addition, there is massive sensitization and training that has been undertaken at all levels of the healthcare system.

It’ll easily be around 300 to 400 nurses who are working at any point of time in the state, doing just quality care full-time, not part-time. And maybe around 50 doctors working full-time in palliative care.

The state health minister, who is very dynamic, does a monthly review of our programme just like he reviews other programmes. He gives special importance to palliative care. He will do a face-to-face review, virtually, but it is very official and detailed.

 

Q: What kind of doctor would be in palliative care? 

We don’t have many specialists because it’s an upcoming specialty. It was just recently that we started offering MD and DNB degrees in palliative medicine. Right now, what is happening is that either there is an MBBS doctor who undergoes more detailed training in palliative care, either a fellowship or certification course, or similarly an internal medicine or family medicine doctor who takes this up as a career. But I think the profile is going to change over the next few years because there are so many postgraduate students now who are going to pass out with a degree in palliative care.

 

Q: How long does it take to train a nurse or a doctor in palliative care? What do they need to learn?

Palliative care training is at three levels. The first level is palliative care approach. Every practising doctor should have this patient-centred approach of providing quality care. They should know how to talk to the patient, communicate with the patient, effectively discuss diagnosis problems. Every health worker should know that. The secondary-level training involves basic palliative care. It involves one month of training or a one-year fellowship where they practise basic palliative care. At a tertiary level you specialize in palliative medicine.

 

Q: And people are doing specialized degrees in palliative care?

I wear two hats here right now. Two years ago, I officially joined as a professor in the Department of Pain and Palliative Medicine, MNJ Cancer Hospital. I also work with the government of Telangana to establish the palliative care programme in the state.

In a voluntary capacity I work with the Pain Relief and Palliative Care Society. I am also associated with the Two Worlds Cancer Collaboration, a Canadian foundation, which has been helping our programme.

We have a formal department of pain and palliative medicine here in the MNJ Cancer Hospital. And we also started a postgraduate training programme in palliative medicine. We have postgraduate students who are getting trained in the new specialty since 2017.

 

Q: Does a knowledge of palliative care enrich and sensitize the healthcare system? Does it make doctors and nurses better at what they do? 

I think you have touched on a very important point there. The one thing they learn (apart from the medical skills) is the value of compassion and the care angle to it. That is what we try to instil in them. They see suffering from up close and we tell them how we can still help these people with compassion and empathy. And that is what they go back home with more than anything else. It percolates down the entire health system. Palliative care is integral to a caring health system.

 

Q: You know, we tend to see palliative care as something which is post-treatment. But surely palliative care should begin along with treatment. What is your experience in such a unique project?

In the districts they  purely see patients who have done everything and are in their homes, languishing and suffering. That’s the kind of patient they see there.

But what I see here in the MNJ Cancer Hospital is totally different. More than 60 to 70 percent of patients will come to my programme here in the department. They receive concurrent treatment, disease-oriented treatment. For both adults and children here, it is a well-integrated system that we have here.

In my work with the Pain Relief and Palliative Care Society, we have been providing home-based care and hospice care in Hyderabad. We have 10 vans going to different parts of the city, taking care of patients in their homes. We also have an adult hospice with 20 beds and a children’s hospice with 10 beds.

Our presence is here in the MNJ Cancer Hospital and in the neighbouring Nilofer Hospital, which is for children. Children born with little issues and having other serious illnesses while growing up are referred to us. And if they go back to the districts, we help these children through the public health system’s programme. It is a beautiful collaborative effort with the government.   

  

Q: How complex is your training of doctors in palliative care?

Good question. Most of the time, when we study medicine, we think of curing patients and making them all right. We never have any content on what if we can’t fix the problem? What when we can’t cure? This training is all about dealing with people with life-limiting or serious illnesses. And helping them live as normal a life as possible. We teach the doctors about management of various symptoms.

We teach the doctors about communication. How to talk to patients, how to discuss serious illnesses. We call it a serious illness conversation: discussing diagnosis, prognosis, end-of-life care issues, making advanced care plans. Doctors need to learn about mental health issues because we cannot refer patients to psychiatrists all the time.

Doctors and nurses need to acquire cultural competency so as to help patients live the life they wish to live. And then we also talk about spiritual care. More and more, modern medicine is talking about patient-centred care. And that is what is evolving in palliative care.