Q. In 1973, the term ‘palliative care’ was coined and you started your hospice ‘Kosish’ in 2006. Can you explain what palliative care is and what ‘Kosish’ is all about? Could you also elaborate on the evolution and history of palliative care in India?
To address palliative care in the most common sense, cancer patients are most often referred to. Most of the cancer patients in India are diagnosed quite late. By the time they are diagnosed, it’s already in stage 3 or stage 4, when actually there is no cure available. Most of the times in these advanced cancer conditions, the doctor tells the family to take the patient back home and take care of them.
This is easier said than done. There are lots of issues surrounding caring for a very sick patient who is terminally ill, who has just a few days left to die; for example, going to the washroom. Passing stool while on your bed into a bed pan while having other people in the room watching you is very difficult.
Cleaning it up is even harder; a sense of revulsion and shame comes in. Suppose the patient is your father and you are his only child and have been assigned to clean him up, how would you go about it? How comfortable would you feel cleaning up the stool of your father, of whom you have looked up to all your life?
Collecting the stool in the bed pan, cleaning up the patient’s private parts, then taking the bed pan to the bathroom and cleaning it.
People don’t think of the details unless they are suddenly faced with it. And when they are faced with such challenges, they are totally unprepared.
This is when there is a lot of resistance which comes up, there is shame, guilt, anger and most of the time these frustrations are taken out on the poor patient. Patients are abused, either verbally or even physically at times. So, palliative care basically is a specialty which addresses all these symptoms.
A terminally ill patient who is alone in a hospital or at home, say who has severe pain or nausea or vomiting – how to make the last few days of his life worth living and of comfort, to die with dignity
We are not focused on death, we are concerned with life. Even if you have only one day of life left, that day should be as comfortable as possible. That is the aim of palliative care. Here we are not trying to cure the disease; the disease has no cure. But that doesn’t mean that nothing can be done; a lot can be done. We can take care of systems such as nausea, vomiting, anorexia, bed sores, painful dressings.
Addressing other issues like cultural issues. The patient may go into depression because no one wants to talk to him. Even if you just focus on the elderly, a patient who is paralysed, how does the family cope with the patient’s illness? You literally become a social outcast because your friends will stop visiting you out of stigma of having a patient at home. The suffering is not of the patient alone.
The whole family suffers with the patient. So the problem is not just physical but also psychological, social, financial and cultural.
Then there are spiritual issues; you start blaming god. Even if you don’t believe in god, you might think “why is this happening to me?” You start seeking answers but most of the time you don’t find them because there is anger, frustration, guilt. So, palliative care is a branch which addresses all these concerns of a terminally ill patient where there is no scope for a cure.
You know the patient is not going to survive for very long but here we are not concerned with the number of days a patient has but the quality of life the patient has during those days.
The whole family suffers with the patient. The problem is not just physical but also psychological, social, financial, and cultural.
“The whole family suffers with the patient. The problem is not only physical but psychological, social, financial, and cultural”
Palliative care started off in India around 1992. The first so-called hospice was in Mumbai and the Indian Association of Palliative Care gradually started. But the palliative care movement saw a lot of resistance because doctors don’t want to give up on their patients, even those that are terminally ill. In the medical profession, we are taught, wrongly, to never give up.
Dying, is a normal thing. If you are born, you will die. We need to accept the fact that death is normal. Death doesn’t simply happen, there is a cause for death. It could be a heart attack or a stroke or anything else. Doctors need to understand that death is a physiology and should be given a chance too.
You should learn to let go at times. That is where there is a lot of resistance on the part of doctors because they don’t want to give up on their patients easily, there are financial concerns and many other things. There is also a lack of awareness.
So the palliative care movement was pretty slow to start in India and it went about in hiccups. The social and cultural building of our unique country is such that we are a death denying society. Death is not spoken about. As children we are taught to fear death. But death can be a beautiful thing, a sort of release, for a person that is suffering.
If you look up the near-death experiences of people who nearly died and were resuscitated and then brought back to life, they say that death was very beautiful.
The so-called out-of-body experiences of seeing the white light or whatever it is. Those were very peace giving moments. And so death is not something we should be scared of as at some point we are all going to die. Death is the only guarantee that you have.
“Most of us in this death-denying culture, die in hospitals, die very lonely, undignified deaths, die in neglect. This is where a lot of advocacy is still needed.”
Sadly, although, we realize that death is the only guarantee, and as we are a death-denying society, we don’t plan for our death. The only thing which matters to us in this life of ours is our death because that is the only reality that will happen and it requires a bit of planning. And so you need to ask yourself a very simple question: where would you like to die? If you had a choice, would you like to die in a hospital? Or at home, surrounded by your family?
Ask yourself this and see yourself having the answers already. Sadly, most of us in this death denying culture, die in hospitals, die very lonely, undignified deaths, die in neglect. So this is where a lot of advocacy is still needed.
But if you asked large hospitals to not admit their terminally ill patients and let them die at home, they will not listen to you. That is where their billing comes from. If their hospital beds are empty, then they can’t survive. They need their finances to start flowing in.
Whatever money a person earns in his life, whatever savings he has, most of it is spent in the last few days or years of his life on medical bills. The sad fact is that although you are spending your savings on hospitals in the last few days of your life, still those expenses can’t save you.
That money spent also isn’t going to prevent death. So people need to understand and change their whole thought process about death and dying so they can focus on making their last days of life more comfortable, dignified, and peaceful.
This is my understanding of palliative care. Palliative care is not limited to cancer patients. The single largest group of people who require palliative care is the elderly because even if we don’t die of cancer we will die of old age. So the elderly, especially those who are bedridden, require palliative care. There are other illnesses such as chronic heart failure, chronic liver diseases, dementia, and other neurodegenerative diseases.
Q. As of 2018, there are approximately 150 centers for palliative care. However, the total number of people that require it is likely to be 5.4 million people per year. What is your opinion about the policy changes that are required to improve the palliative care system?
Way back in 2008, I had decided to go on a tour of India. I wanted to tour the whole of India, taking the lesser travelled routes, going through villages and small towns rather than big cities, to find out what exactly are the palliative needs of the patient.
“The single largest group of people who require palliative care is the elderly because even if we don’t die of cancer, we will die of old age”
Whether the general public is aware of what palliative care stands for and whether or not they justify the use of palliative care. I had no access to any funding and with great difficulty, arranged a car. I was accompanied by one OT technician of mine.
We just started driving and managed to cover seven states in Eastern India. We used to start driving at 6 o’clock in the morning, stop at 11 o’clock for a combined breakfast and lunch because there was a shortage of money and around 5 pm whichever Dhaba or Dharamshala or gurudwara we could find, we used to sleep.
And we used to talk to people. During this tour which lasted a total of 15 days, what I found out was that in India, the basic need still is food. There is poverty. As they say, you can’t pray on an empty stomach. So, in a house, if there is a dying person, and if it is in a family which can hardly afford food, the family actually prays that the person dies early. Because if that person dies, then his share of food can be shared with the rest of the family.
So poverty is a real issue and it’s a big issue that needs to be addressed. So in India, our priorities are slightly different. These people cannot even focus on the quality of life as the term itself means something very different.
For us, it may mean an AC room, a private bathroom, a soft mattress, and a bottle of Pepsi. But for them, quality of life may mean a full meal at least once a day, some water to drink. They don’t mind the pain – I have seen such people in villages because I practice in a rural setting.
The rural people are more tolerant to physical stress because they have faith. It is said that faith can move mountains. They won’t have access to medications but they have faith. They have full faith that god or some superpower will take care of them. They are not afraid of death; they know that they have to die and they accept it. That is the difference.
So as I said, poverty is a big issue in India and unless it is addressed, we can’t go to the next level which is palliative care. Of course, in big cities where bellies are mostly full, you might go ahead, but the real stumbling block from the grassroot level is to first satisfy the basic needs. You need to give food and shelter to people before you think of the next level which is quality of life.
We still don’t have a national policy on palliative care although suggestions were given to the ministry which is pretty positive about it and have been working on those suggestions. I hope that very soon we have a national policy on palliative care but until then, the ball doesn’t go rolling really fast. Some states do have state policies but there is still a lot of work required. Still, the first priority remains food and shelter.
Q. Although palliative care is critical to managing symptoms, pain, and transitions to end-of-life care among those facing serious or chronic illness, however, it is often overlooked due to the stigma attached to it. Can you elaborate a little bit regarding the stigmas surrounding palliative care and explain why is it such an overlooked issue?
“You need to give food and shelter to people before you think of the next level which is quality of life.”
As I had mentioned earlier, there are many stumbling blocks towards the acceptance of palliative care, especially in urban society. One of the largest blocks, especially in the urban population is ‘Bagal wala kya bolega’ (What will others say?).
For instance, you have a relative who has terminal cancer, requests and pleads to you to not take them to the hospital, and that they want to die at home. However, you still take them to the nearest hospital as soon as their condition would deteriorate. This is only because you start wondering what society will think and say? This is the social stigma.
Here, sadly, we are not focusing on the patient’s last wishes, instead, we are focusing on ourselves. It is our selfish interest that is coming forth. Here your love for your family member who is terminally ill gets overshadowed by your selfish nature and ego.
Although most people realize the fact that dying at home is blissful and satisfying, yet they take the patients to hospitals, where they would die in isolation, without dignity, hooked onto a ventilator. Do you know what it feels like to be hooked onto a ventilator?
There is a tube that goes down your windpipe, your hands and feet are restrained so that you don’t pull out the tubes. Suppose your nose starts itching, you can’t call out for help because you can’t speak, you can’t do it yourself because your hands are restrained. It is a very costly death.
On an average, a person pays Rs.25-30 thousand per day for the ICU. So not only are you spending money but at the same time, you are dying in pain and paying for neglect, all without dignity. This is the so-called blessing of modern medicine. The choice is ultimately yours, and it has to be a very firm choice.
Whether you would opt for that type of death or would you rather choose to die with dignity and comfort, with palliative care coming in and supporting you and your family throughout the journey of your life. As far as pain is concerned, morphine is a big issue, however, narcotics are very useful.
The NDPS Act of India, which was implemented to prevent the misuse of narcotics, is a draconian law. This is because, under its umbrella, the use of narcotics for medical use also got restricted. There are a lot of legal and licensing issues, to handle, procure, store and dispense narcotics.
“Not only are you spending money but at the same time, you are dying in pain and paying for neglect, all without dignity. This is the so-called blessing for modern medicine”
This is one of the main reasons for the decrease in the usage of narcotics. These drugs go a long way in the prevention of physical pain. Here I am stressing about the physical pain. Pain is not just physical. Imagine a person who is terminally ill, with only three months to live. S/he is immobile with severe pain- this pain is not always physical, it can be psychological, social, or even spiritual pain.
There was a recent study conducted at AIIMS Delhi, where they found out that the physical pain of terminally ill patients accounts for hardly 33% of the total pain. The rest of the pain is psychological, spiritual, and social pain. This is something we should never forget. These kinds of pain can be tackled by family members, friends, and volunteers.
The common man can contribute a lot to improve the quality of life. Palliative care is not just the responsibility of the doctors and nurses, it is a social movement and a social responsibility. This is the essence of palliative care.
Q. The pandemic brought along a lot of changes concerning access to public healthcare. How has the virus and the lockdown impacted the access and functioning of palliative care?
Palliative care, like any other medicare, relied a lot on home visits, as compared to hospital visits. In palliative care, the health professionals believe in visiting the homes of the patients, because the patients are not in the state to walk over the clinic. Home care is the backbone of good palliative care. Naturally, due to the lockdown, home visits were curtailed to a severe extent.
However, we used social media to help the patients as far as possible. In the case of the pandemic, especially during the first wave, patients died lonely deaths. There was fear on part of the healthcare personnel, fear for your own lives and then there was a dehumanization of care. In one case, a person was dying due to the virus and had only a few hours to live.
He would try to look up to the doctor or nurse to see their face, but couldn’t because of the PP kits and masks. It was a horrible way to die because it was a lonely death. No one would come close, in the fear of contracting it.
Apart from that, after the death, the body would be packed up and zipped up in a black bag. The family members were not allowed to perform the last rites in a culturally appropriate manner. The whole process of grieving had to be curtailed. Grieving is a very important part of the process of bereavement. After people die, the relatives need the period of grieving, as it gives a sort of meaning and purpose to whatever that person stood for.
Paying your last respects, in a culturally appropriate fashion, was also denied during the lockdown. There were hurried burials and cremations, which was not an appropriate thing. Palliative care took its own thrashing, just like other specialties of medicine.
“In case of the pandemic, patients died a lonely death. There was fear on part of the healthcare professionals. fear for their own lines and then there was a dehumanization of care.”
Dr. Abhijit Dam is the founder of KOSISH- The Hospice. KOSISH is an NGO that has pioneered the provision of palliative care services to the elderly and the terminally ill in the states of Jharkhand and West Bengal. Starting from humble beginnings in 2006, this is one of the few genuine initiatives in palliative care to have sustained their efforts in rural settings over time.