End of Life Care, Delivered With Empathy

The story of Dr. Suresh Kumar and the Neighborhood Network for Palliative Care

HOW WE TRY TO HELP people get better is changing but how we look after people who cannot be restored to complete health is also the subject of change.

Palliative care has been seen as a way of keeping people comfortable and free of pain for some time now. With ageing populations across the world, there are no two ways about it - there is a greater demand for palliative care.

Many of those involved in palliative care are volunteers and this makes it far more difficult to manage. People who give up their time freely cannot be treated like a member of staff and leaned on to do more and more. Often people end up caring in palliative situations because their personal circumstances brought them there. They may have been a carer for a loved one or have seen the distress that the end of life situation can bring to people. They need this desire to be nurtured and supported, particularly if the care they deliver is to a loved one.

Looking at the patient as a whole in their last days doesn’t always get the precedence it should. Quality palliative care is something that retains dignity in the face of harrowing circumstances. The solution is to deal with the situation in a different way.

In the early part of the 21st century, Dr. Suresh Kumar decided that he would look at a solution for palliative care. One of the main issues in palliative care in his home state of Kerala was the cost of care. It meant that it was out of the reach of most of the population. People were dying at home in discomfort, surrounded by people who loved them but were not able to provide anything of quality in their care program. The other main issue was the fact that palliative care wasn’t covered in any great detail in medical school in India. This is a trend that can be seen across the world in medical schools.

The two factors above made it obvious to the doctor that education was the first step on the road. Like the education systems that we looked at in the last post, Dr. Suresh Kumar decided that working on this on a neighborhood level to pass on best practice was the right way to go. The Neighborhood Network for Palliative Care was set up and the work began.

It offers a training program so volunteers know what standards of care are required from patients. It takes the empathy that a volunteer has and molds it in the right way so they can offer care that meets the needs far better than what has been delivered before. The Institute for Palliative Medicine is the branch of Dr. Kumar’s model that delivers the training, while the Neighborhood Network for Palliative Care puts this training into practice. It provides a connection between volunteers and the professionals of the healthcare industry that can provide training and support. This is a vital connection. Volunteer help doesn’t have to be amateur, so long as it is nurtured in the right way.

It switches the view of how palliative care is delivered. In much of the world, palliative care is viewed as a medical treatment. The administration of pain relief, the journey to death and the plan for that journey have all been put together by doctors. The social care element of this is tagged on at the end – as some sort of afterthought. Dr. Kumar has switched this around and makes the social aspect the biggest factor in the plan. People want to help and be helped. The social part of the care is what get volunteers out of bed in the morning to come and help. This help needs to be nurtured and developed to become the driving factor behind why people volunteer.

The medical needs are secondary. People need pain relief, but it should not be at the center of all that is going on. For people to retain dignity and have a life that is as comfortable as possible, they need to feel human. They need to feel loved. They need to feel cared for. All of these come from time, not drugs.

So, the first step on the road to becoming an effective volunteer is training. Just learning the basics of care is one thing – learning how to deliver palliative care in a different framework to what has gone before is another thing altogether. Luckily, Dr. Suresh Kumar has been able to build the network from the ground up, so every part of it works to the same goal. The volunteers are given a 16-hour training course that covers the different parts of palliative care and where they can fit into the team. This means that each new volunteer adds extra support to the existing Neighborhood Network. The training isn’t all in the classroom, as volunteers are asked to visit people in their homes and look at the effective provision of palliative care. When different people look at the situations in their neighborhood, they are able to discuss what they have seen with their peers, this collective knowledge helps to build future care plans that are more practical and effective.

The networks are charged with providing support emotionally and financially so fundraising is an essential element of the care these volunteers provide. The Institute for Palliative Medicine has a series of local hospitals that provide in-patient facilities and in larger neighborhoods they establish outpatient clinics to deliver as much help as possible to as many people as need it. The numbers that are now present under the banner of the Neighborhood Network for Palliative Care are pretty impressive –

·      200 neighborhood units

·      10,000 volunteers

·      60 full-time doctors

·      200 auxiliary nurses

·      2,500 patients seen per week

Whichever way you look at it, the growth of this from a basic idea to something that is changing lives is astounding. Volunteers with no connection to palliative care are getting involved, whether a few hours here and there or giving up a vast amount of their time. The fact that they are trained and supported gets people through the door. The fact that they are appreciated and become part of the decision-making process, rather than just running errands for the healthcare staff transforms this into something that people want to do day in, day out.

It has also changed the mindset of the medical community and the legislators. The local government in Kerala has recognized for the first time that palliative care in the home is part of the healthcare system. Getting the medical community to support these volunteers with training and guidance keeps people out of hospital and saves money, as well as providing quality care that makes the patient and their family feel better. Healthcare has become disjointed over the last few decades as the specialisms have gone off on their own path without looking over their shoulder at what the rest of the industry is doing. Bringing this all back together again for the final days, weeks or months of life is the way forward. It also shows the way forward to the rest of the medical community.

Looking at a system and reinventing it from the ground up takes some guts. Dr. Kumar decided that what was there wasn’t working in any way that was important to the patient. It is another classic case of the healthcare system being set up for the ease of the medical community, not the patients. But effective change brings about sustainable results that improve lives. This is what Dr. Suresh Kumar has done in Kerala, and now expanding to other parts of the world.

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This post is part of a series on The Healthcare Gamechangers. Read all the stories in this series here.

If you liked this post, you might be interested in my other posts: The Healthcare Gamechangers, Hospitals, a historical perspective and relevance for the future, You are not the Unicorn, You are Awesome, Shoot me if I ever say these things to a startup team, The Doctor is NOT in, the Doctor will see you NOW, and Davos Learnings for my Daugther.

About Ashwin Naik

Ashwin Naik is an entrepreneur with interest in affordable healthcare, social enterprise and healthcare technology. You can also visit his blog to read more.

Ashwin has been recognized as a Economic Times Leaders under 40, Young Global Leader By World Economic Forum, Young Leader by Asia Society, Senior Ashoka Fellow & as a Ted Fellow.