“WE are good at helping people coming into this life, but we are not necessarily very good at helping people be comfortable when they pass away.”
Dr. Ed J. Dubland of Burnaby Hospital’s Burnaby Palliative Care Program pointed that out to me last week when he came over to The VOICE with Dr. Ann Thyle, whom he had met in India in 2008 and persuaded to start a palliative care program in North India that is now providing amazing care and comfort to the dying poor in rural areas.
Anne is currently a consultant on anesthesia, pain and palliative care with the Emmanuel Hospital Association that has 20 hospitals across North India with a focus on the poor and the marginalized, catering to the rural poor.
Dubland, who speaks Hindi, was born in India and went through high school in Mussoorie in the north Indian state of Uttarakhand, which was part of Uttar Pradesh at the time. His parents were missionaries and he spent time in the Garhwal hills. He went to medical school in B.C. before joining Burnaby Hospital where he is the medical coordinator of Tertiary Hospice Palliative Care.
As Dubland explained: “Hospices are places where people can be cared for in their own home … and so they are dying, but family members can’t cope or take care of them. Hospices are locations where they can be taken care of outside of that by nurses and physicians, but it’s not in the hospital.”
When Dubland started out in family practice and took over from an elderly physician who had a number of patients who were quite ill, he noticed that “a number of those who died, died very poorly.” And he said to himself that there had to be a better way to come to the end of your life.
He added: “So as a result of that I went and did some training and found out that there existed this whole area of specialty called palliative and hospice care which is taking care of people as we come towards the end of their life. This was here in Burnaby. I did some training in England and did a bunch of work with that in the ‘80s.”
Then in the early’90s a palliative care unit was established at Burnaby Hospital. It became an acute unit which started taking care of people who had major symptom control problems of pain, shortness of breath, cough, vomiting, psycho-social issues, people who were struggling with the inevitability of the end of life type of thing. Then they developed hospices.
In 2008, a pastor from Kerala, whom Dubland’s parents had known many years ago, suggested that he should look at doing this kind of care in India.
Dubland decided to take that challenge up and headed to the south Indian state of Kerala, visiting Cochin and Trivandrum. Kerala has a well-established palliative care program. However, there is very little palliative care in north India.
Dubland noted: “And my heart is from north India because I grew up there.”
While looking around for some people who might be interested in palliative care, he visited an organization called Emmanuel Hospital Association where he met Dr. Ann Thyle, who was teaching at a rural hospital in Herbertpur in Dehradun district.
Dubland said: “She had an interesting chronic pain management and I said Ann what you need to do is think about doing palliative care. She thought about it and after about six weeks I got an email from her saying ‘I’d like to do this.’”
Thyle studied medicine at the famous Christian Medical College in Ludhiana, Punjab, from where she also earned her MD in anesthesiology. She also taught at the college. She and her husband, Sydney, an ophthalmologist, were then asked to visit the Herbertpur Christian Hospital because they very badly needed an anesthesiologist and an ophthalmologist. That was part of the Emmanuel Hospital Association mentioned above. The couple worked there for 16 years and then in a hospital in Mussoorie for six years. Thyle is currently based in Delhi.
She met Dubland in Delhi while doing a fellowship in pain management. She said: “When Dr. Dubland talked to me about palliative medicine, I started reading it up and I realized across north India there is very little by way of care for the terminally ill people. So I asked my organization if I can start this as another service and they agreed.”
So took a course offered by Flinders University in Adelaide with classes in Singapore at the National Cancer Centre. She was apparently so enthusiastic about it, that during her training she had already started planning the first palliative service which her organization set up in a small town called Lalitpur, close to Jhansi, in the state of Uttar Pradesh.
Thyle said: “We have a small 40-bed hospital there and we renovated one of the wards and created a palliative care in-patient and out-patient service.
“But we realized the majority of the patients would need to be cared for at home. So we built up a team that went from house to house. We registered people who had cancer or HIV or any kind of chronic organ failure like chronic heart disease. This was in 2010 and we did the planning and training in 2009.
“Eighty-two per cent of our patients have cancer, about six per cent are HIV positive, about six per cent are paralyzed for some reason – it could be a stroke or it could be a road traffic accident – and six per cent have an organ failure.
“So these are all people who would die without any kind of care whatsoever because in the villages they are hidden in the huts and you never come to know about them. They cannot access any kind of care because they cannot afford it. They are very, very poor people.
“So when we offered them a whole-person care, we were offering them medical care as well as emotional support, social support and spiritual support. When they were coming to the end of their life they had very deep questions about the value of their own lives and what will death be like and what will happen to my family?”
Thyle’s organization, the Emmanuel Hospitals Association, built up teams in six other hospitals, establishing palliative care services in a total of seven hospitals in five different states of rural north India. The teams have nurses, nurse aides, social workers, some volunteers and a doctor – and all of them receive training in this specialty.
The teams have to actually find the patients in the villages. The strategy was to hold very large community awareness programs.
Thyle explained: “We go into a village and as soon as people see the hospital vehicle, they all crowd around and we tell them the dimensions of palliative care. We say if you have a person who is very ill in your family and maybe has been diagnosed with cancer, we are willing to look after them.
“They don’t understand what palliative care is, so we spell it out. We use flip charts, we use banners, we use pictures and we use illustrations to help them understand. They are mostly illiterate people, so the message has to be repeated over and over again.
“And it’s during these awareness meetings that we actually find the patients because people will come to you afterwards and say my neighbour has cancer of the mouth or my other neighbour has cancer of the breast and they are not being cared for.
“So like that we built up our patient numbers. So now we have looked after over 700 patients in all the seven locations (that started at different times) over the last four years and we’ve had over 500 in-patients and over 500 out-patients. And we have brought about awareness to probably about 40,000 people just by holding awareness meetings.”
Thyle then took the next logical step: approaching the medical community to edify them about palliative care.
She recounted: “So we target the primary health centres and the community health centres and the chief medical officer of each town and we hold meetings among doctors, the government nurses and the ASHA (Accredited Social Health Activists) workers.
“ASHA is a system put together by the government’s National Health Mission. It’s a way of training village women to do certain key activities like maternal and child health, helping people access pre-natal care, helping children to be immunized, taking them to centres for safe delivery, but they also train them in simple nursing care for palliative care. Because they are from their own villages, they know their community, and they have access to the homes.”
Indeed, it’s become a movement in North India!
Thyle said the Emmanuel Hospitals Association is hoping to spread these services to their other hospitals. However, they also want to empower the local government hospitals.
She noted: “So once we train the government doctors, they become the people who refer patients to us because most times the villager goes to the local doctor first and the local doctor realizes they have advanced cancer which cannot be treated, and then they refer them to our unit to be taken care of.
“Unfortunately, they cannot offer cancer care. By the time we see them they are very advanced. And most of our patients die within three to six months.
“It’s devastating for the rural poor because they don’t have access to any care. They don’t even have access to a paracetamol or an aspirin tablet. So they will be dying in such terrible pain and suffering that it’s unimaginable. I’ve worked for this organization since 1981, so I’ve had 32 years of working with the rural poor. But I have never seen suffering to the extent that I am seeing now.”
Just imagine going to the home of a person with cancer of the cheek. He has a large wound and it’s crawling with maggots and there is no pain relief. It’s so smelly that no one goes near the patient.
Thyle added: “So we even have to start out by cleaning the patient’s home, then cleaning the wounds, giving them a bath, and then teaching the family members how to care better for that person. We teach them how to do simple dressings (of the wounds). We teach them how to give pain medication. We teach them about nutrition. We even cook for them and show them what nutritious food is.”
Then there was the question of prevent a patient’s family from starving when the main wage earner is stricken with a terminal illness.
Thyle said: “We started income generation projects to allow the family to generate some income and we found two things that really worked. One is helping to start a small tea shop in their village. And the other thing we do is if there are young teenage girls, we teach them how to sew clothes or bags and then we can market them. And once they reach a certain level where we know they are self-sufficient and they can sew clothes on their own, we gift them a sewing machine. So they can take it home. A sewing machine costs about Rs.3,500 now [CDN$70] and we have negotiated with the shopkeeper in Lalitpur and told him why we are doing this, so he gives us a subsidy.”
But then Thyle went a step further in compassion as she found that families are often starving because they don’t have even money to buy basic food items when the main wage earner is sick. She said: “So we give care packages – we don’t give money – but we give like rice, flour, lentils, salt, oil, the basic stuff they would use every day. And we give about Rs.2,000 worth of food supplies per month to needy families.”
Then there was the problem of children being pulled out of school if a parent fell sick to either earn or act as the main caregiver.
Thyle said: “So you would have a 10-year-old looking after their father who’s dying. We try and make it possible for children to remain in school and we can only do that if we are doing home visits on a regular and frequent basis. So we have a priority list. If someone is very sick, we would visit them three times a week. People who are less sick we would visit them maybe once in two weeks. Keeping children in school is very important.”
Another serious problem was children starting to chew tobacco at a very young age.
Thyle said: “We do very large school awareness programs in which we negotiate with the school principal to be able to talk to children from Grade 8 upwards and we do it in a very structured fashion, so that we teach them about cancer prevention, especially oral cancer prevention.
“I show them packets that are sold and say if you chew this, this is what is going to happen to you. We have banners we show them about the progression of the disease and in the end we show them this horrific picture that scares them terribly.
“And the feedback we get from the children is ‘we never knew this’ and ‘we have people in the family who are chewing tobacco and we are going to go home and tell them about this.’ And the other message we get back from them is ‘oh, we have a neighbour who has cancer of the mouth which you should come and see.’ So that’s another way of getting patients.”
I asked Thyle how she viewed the future of the movement her organization has started and she responded: “We really need to advocate with the government because each state government has funds under the National Health Mission for non-communicable diseases under which comes palliative care. To actually get funding from the government is very, very difficult.
“So we keep advocating for it with the local authorities. So sometimes we get donations of medicines, sometimes the local bank will give you a donation, but so far we haven’t had any success with tapping into government funds.
“But that is something that I am looking forward to in the future. For example, in Maharashtra we have one hospital that is doing palliative care and Maharashtra has a state policy that just came into effect in 2013. Under the state policy, if you can become a training centre, you can be funded.
“So we are already renovating a portion of the hospital to be a training centre for palliative care. We are part of the Indian Association of Palliative Care, the national body that offers this training, and the certification from the association then gives a doctor or a nurse the licence to practice palliative medicine and also to prescribe opiatic medicine.”
She noted: “Lalitpur, our first centre, is now the only accredited rural training centre accredited by the Indian Association of Palliative Care in all of India. It gets some funds for the training from the association.”
Thyle was recently recognized as faculty by the association and that gives her the licence to teach instead of being dependent on other people to teach.
As for the future, Thyle said: “What I see is that if we can build up models in different rural areas.” As the word spreads that people don’t have to die in pain, and that there is always something you can do, more people will seek their services.
She added: “What we are saying is that in palliative care, there’s always something we can do. We can always give some medication to improve the quality of life until the person dies.
As we say, we cannot add days to your life, but we can add life to your days. What Mother Teresa said was you just do small things with great love and that is the message we need to give over and over again when we are training.
“Things like cooking something for them, giving someone a bath who hasn’t had a bath for three months because no one will go near them. Giving someone a bath is an act of compassion. So people die with dignity because they know that there are people who come in and touch them. Mostly they are shunned and nobody will touch them.
“Everyone wants to be recognized and everyone wants to feel that their lives meant something. So when they are suffering they often question what was the value of their life, why they were born at all?
“But when you give them that importance, when you listen to their life’s stories and you are willing to participate in their suffering and decrease it to whatever extent you can and also provide support to the family members who are grieving, that means that they can go with the hope and comfort that every person deserves when they die.
“What lives on then in the memory of the family is that my loved one didn’t suffer when they died and leaves a deep impression on them.”
BY RATTAN MALL
Thank you, Rattan and team, for featuring this article and giving us an opportunity to share our experiences in medical care for the rural poor in north India.
Best wishes for every article that you publish – you really keep the subcontinent alive for those living in Canada!
Ann