Sunday, December 28, 2008

Palliative Care -2 ( Personal Experience)

The following article is my Uncle’s personal notes about his experiences as a Volunteer- coordinator of Ottappalam Palliative care clinic. Actually it is part of a mail that my uncle mailed me and I’ve retained most of his words as in the mail.

When I heard about it first time:

It was about 4 years back when I had gone to a shop owned by a cousin of mine in Ottapalam, where two young men got introduced to me as hailing from a village nearby Vellinazhi ( Kerala). I did not understand the relevance of palliative care from them either, as some how or other I connected it to trauma units and I had no idea absolutely about the non-medical aspects of the deadly disease Cancer. I had assured them that I would get in touch with them later as I was going out of the country next day. The clinic with which these two young men were associated with, was functioning at Ottapalam itself and still very few people had heard about it.

Two years passed by, during which time, I had settled down in Ottapalam and was taking active interest in the socially beneficial activities of Ottapalam Welfare Trust. OWT was studying the feasibility of setting up a detection / diagnostic unit for cancer at Ottapalam and as a distant dream to set up curative facilities due to the relative large number of people affected by cancer coming to the free clinic we had set up there. On contacting a similar project at Ernakulam, we learnt that they had set up a palliative clinic there, which prompted us to get further details from Calicut Medical College and Institute of Palliative Medicine nearby. On reaching there, we had a first hand exposure to the way in which the outpatient clinic was functioning as also the relevance of such facilities to the society. We were bit surprised to learn that there was a clinic in Ottapalam itself, which is now functioning at Cherplacheri. This was none other than the unit about which the two young men referred to, in the previous para. The unit in the meanwhile had shifted to Cherplacheri from Ottapalam due to lack of public or community participation.

It took not much time afterwards for us at OWT to decide to start a unit in Ottapalam, guided and assisted by the Cherplacheri unit. We started with a once weekly nurses home care unit and started 7 months later a doctor's home care once a week. 8 months later we started outpatient clinic once a week.

What made me join:

The activities of Ottapalam Welfare Trust at that time were confined to such works, where my involvement was required for only an hour or so, just in an advisory capacity. A thought occurred to me; here I am doing nothing very concrete, spending time in reading articles and books and taking part in social activities related to my immediate relatives and neighborhood. I felt this is a field where I can do something, as anything done with a positive attitude would help many and so long as I enjoy reasonably good health I should be doing something like this. The doctors and a volunteer trainer who came from IPM Calicut and Manjeri, to conduct training sessions at Ottapalam, had stressed on one aspect that is at least one trustee of OWT should take active interest in the affairs, as otherwise many factors wouldn't be understood by the management. I decided that I should do it, as I might have only about 5 years before I cross the age of 70, by which time, my movements could get curtailed down. You can say that the prime motive factor in deciding that I should join the movement is my urge to be of help to the society at large, without involving in any politically oriented outfits, as is what is seen in Kerala State.

My experiences:

Two instances will never fade away from my memory.

One is the case of a woman patient, who was 79, suffering from acute stomach cancer and consequent pain, preventing her from taking any solid food. On our first home care visit to the home, we found the patient was wailing all the time, not giving a respite for her daughter for a minute, even going to toilet was impossible for the daughter, whose husband is both deaf and dumb, employed in the Amulya condiment factory near Ottapalam. Her only son's (aged 18) education had to be discontinued after 11th, due to financial constraints and was working in a STD booth nearby. The daughter was in a very distraught condition. The patient's son is working in Indian Army as an officer in Meghalaya and can't come on vacation when he needs to come. Seeing the situation in her home, I asked the nurse accompanying us, whom should we 'treat' now, the patient or her daughter. When we visited the same patient next week, the daughter was in very composed form and was clearing telling us to the effect that 'at last some one understands me". Her neighbors were definitely sympathetic to her, but did not know how and in what way she could be helped. We visited the home at least 6 times later and at all times, the daughter was composed. Ultimately, the patient met her inevitable end, but we had the satisfaction that we could make at least the daughter comfortable in her mother's last days.

Take the case of another 25 year old patient, suffering from paraplegia; damage occurred to the spinal cord due to a tree falling on her body, while she was walking to her home on 30th June '07, from the bus stop after a day's work as a sales girl. It suddenly rained on that day with heavy winds at the time of her return and an old, tall tree fell on her. Luckily (?!) two other people walking behind her noticed the tree falling and rescued her, from underneath the tree. She had tobe confined to her bed for more than 15 months after the initial treatments in hospitals who declared her suffering from damaged backbone and spinal cord. Nothing else could be done to bring her back to normal life. Prior to this unfortunate incident, she was engaged to get married. The prospective bridegroom is still interested in marrying her, in case she is in a position to walk. We at Ottapalam clinic, on hearing her plight started giving her the necessary care, such as changing the catheter tubes, dressing her bed sores etc. Our doctor had in the meanwhile heard of a clinic near Coimbatore who had offered to provide a special physiotherapy to similar patients (with some medical constraints to suit their methodology), in case no bed sores are there. Hence our doctor gave a crash course to the patient to cure her bed sores and later we took her to the clinic. After one and half month's treatment there, the patient was in a position to stand up and take a few steps with the help of a walker. The clinic had charged the patient nothing, as the expenses there are met by a charitable society. We need buy only the gadgets like a specially fitted wheel chair, calipers and walker. A benevolent lady and the local rotary club shared the costs and we could bring her back home after the first course. We have just taken her back to the clinic for the second phase of treatment, as was planned. One should see the relief and smiles we have been able to bring back to the faces of her poor mother and sisters to believe my story.

These two instances along with many other similar cases have proved to me the necessity of providing palliative care, as there is a large scope for such services to society, so long as we are in a position to render to our hapless brothers and sisters. Attitudes can make a lot of difference.

Not so pleasant experiences:

Since this system of home care has not been understood by most of the people, leave alone the close relatives of the patients who get assisted in taking care of them, unpleasant experiences can be understood better only after I describe what we are actually doing in the field.

What we are doing: (Volunteers):
I think I will be doing justice to myself only if I describe now 'what we are trying to do', as then only unpleasant experiences can be understood. You might conclude that what we are supposed to do is bit utopian, considering the enormity of the situation. Each patient has a different background, even if medical records may classify the disease as well as the extent of disease are just the same. Even if the physical conditions are the same, financial situation may be different. Even if financial background is also the same, the mental make up of the patient and his relatives or caretakers can be different. In a nutshell, we the volunteers are trying to offer solace to the patient in all the above spheres and hence each case will need be addressed as a distinctly separate and individualistic manner.

Hence in an ideal case, each patient will need to be taken care of by a single volunteer. It is just impossible to get such large number of volunteers, one for each patient. As per the statistics available for Kerala, each panchayath of population 30 to 35000 will have 50 to 100 patients to be taken care of. To get such large number of volunteers with inclination to do voluntary social work is next to impossible, considering the ground realities (requirement of employment, single unit families, commitments to the family, vocations, individual priorities etc). This makes it essential for those volunteers who are inclined and can afford to do social work to take care of more patients, which itself will reduce the effectiveness of each volunteer, both qualitatively and quantitatively.

Volunteers are expected to visit patients regularly to ensure they take the medicines regularly as prescribed by the doctor, to follow the changes in the patient, (level of pain and other physical conditions), to ensure that the patient's relatives are dressing the wounds due to bed sores, keep a schedule of the dates when the catheter tube is to be changed etc. In most of the case, the medicines will not be of curative type, but those required to limit the discomfiture the patient is facing.

Volunteers are also expected to monitor that the education of children of the patients does not get affected, nor they can get two square meals a day. Since most of the patients and their relatives would have understood that they were in the clutches of a killer disease, moral and psychological support could be the most important sphere, volunteers will need to address.

When a patient is declared as suffering from incurable disease, he could be subject to social isolation, as many of his old friends and relatives won't know how to react and console him. As time passes by, he would be forgotten by the society around him and that feeling itself is adequate to 'kill' man. We had nursed a patient, who wanted company of an understanding person for about an hour daily, as none was going to his house for days together. Volunteers can do a lot in such cases.

Financial assistance will be sought by most of the patients, particularly those who have had to undergo costly treatments like chemotherapy and radiation. Even if the patients belong to well-to-do class, they would have exhausted their resources considerably if they have to undergo these costly treatments, apart from the indirect costs involved. Distributing funds cannot solve the problems unless the clinic has access to unlimited resources which will not be the case at all. Distinguishing between genuine and ingenuine demands will pose another difficult problem. One will not be able to choose between patients as all patients approaching your clinic will need be assisted equitably and uniformly.

Further, social pressures from well meaning relations and friends would force them to spend on ineffective treatments and procedures. The patients and their close relations won't know how to take a practical and correct decision under social pressures. To recall a recent incident, a close relative of one of our volunteers was diagnosed as suffering from cancer which had spread all over the body after getting malignant. The patient had undergone all the three accepted modes of treatment in well known hospitals. Hoping against hopes he succumbed to pressures and had sought treatments from hereditary physicians who had no formal education, involving herbals and other concoctions which are not supported by adequate documentation or research. He was reluctant to keep me in confidence about such treatments as he himself was not convinced about the effectiveness of such treatments. But well meaning relations forced him to meet such quacks as he had lost hopes on the whole case. Even if I had known, I do not think I could have dissuaded him from going in for such treatments, as it will be extremely difficult to answer his question, why not try this method, as other methods have been pronounced ineffective. He was virtually looking for a miracle. (Needless to mention, the patient died within a couple of days at the age of 37, even before the first dose of the quack could be administered. The patient left behind his wife for 8 years and a child aged 4).

The psychological aspects will be the most difficult issues to be dealt with. There will be cases when a patient suffering from acute pain asks you to provide medicines for terminating his life and the pain. A volunteer can not accept such a request both on legal and moral grounds. How does one address such a situation? There is an added risk if the volunteer considers such request even sympathetically. Unless care is taken, the patient would treat the volunteer as his enemy who would like the patient to die, if at all the volunteer offers to assist him, out of sympathy on seeing his suffering.

It is also possible that the patient could get spiritually upset. If he is a believer in god, he might start questioning why he was chosen to suffer by the same god, in whom he had all the faith. Even if the patient is an atheist, he could start doubting whether he had been punished for being an atheist. Factors vary from individual to individual.

It is very essential that volunteers should undergo serious training to be able to handle difficult situations. Common sense alone will not be adequate to handle tricky situations.

While medical assistance is the first one to start with, the same should be followed up with assistance on social, financial, psychological and spiritual aspects. These factors cannot be easily quantified as in the case of medical assistance.

The only way to understand the situation is to take part in home care visits of nurses and volunteers. The actual condition of the patient, in all the above mentioned 5 aspects, can be understood during such visits. If the patient visits a clinic, aspects concerning the ailment only could be understood. This change in understanding can make a qualitative difference in the caliber of the care that can be given.

You might think whether all volunteers will need to do all the above. Not at all. There are so many indirect things one can do, without even seeing a patient. For example, some volunteers may be good in fund collection. They can do it as a part of their other vocations. They need not even visit a patient. But he will need to take part in home care visits initially to understand the gravity of situation, as that would make him more effective in fund collection. The premise of the system is that people of each village or locality should be able to take care of the patients in their locality. One can find the field of his service if he keeps his eyes and mind open, with a positive attitude.


Nurses provide the medical care such as dressing of wounds (bed sores), changing catheter tubes at regular intervals, dispense medicines to combat vomiting, pains, constipation etc., in short keep a track of all medical aspects. Nurse' home care visits are as important as more frequent and regular home visits by volunteers, which provide the basis for nurses' actions under the guidance of doctors.


Considering the limited availability of doctors (who have undergone special training in palliative care), home care visits by doctors are far less than what is required. They will need however visit more critical patients with a view to assess the type of care that could be given, apart from boosting the morale of the patients and their relatives.

Unpleasant experiences:

Since the care is being given to those patients for whom curative treatments have become ineffective, thereby declaring them as terminal patients, death rate will naturally be very high. We are only making the last days of such patients more endurable. Hence there could be many occasions, which might force one to think that we could have done better to serve such patients.

In the preceding paragraphs, I had already mentioned one or two instances which have been very unpleasant for me which left the feeling with me that I have not done what I was supposed to do. The most difficult situation was when one ex-volunteer of our clinic came to my home and started sobbing uncontrollably to inform me that his relative was declared terminal by the specialist hospital which informed the patient that no further treatment was possible and he could now go home. In fact I had information from the case history that, that was the case which I could not inform my friend at the right time. I virtually feared that my friend won't believe me, not that such information at that stage would have made any qualitative difference. The end was very well in sight, but to accept the same, was way beyond the relative.

How to break the bad news (BBN) remains as an enigma for any volunteer of palliative clinic as well as Doctors. Patients and their relatives would believe a doctor more than anybody else and hence the onus of breaking the bad news rests with the doctors more often than the volunteers. Doctors may not be questioned by the patients or their relatives, but volunteers could be questioned and hence they have to be more careful on this issue.


The first hurdle which comes in the way of extending care is the stigma associated with incurable diseases by the patients and his relatives. Pressures built up by financial and relationship factors complicate the issue. We have come across patients who are marginalized in their homes by his own siblings. Sometimes it will be unbelievable to imagine that people can behave in such cruel and inhuman manner when someone close to them get declared as suffering from incurable disease.

Constraints due to job/employment etc. on the part of the relatives can leave the patients unattended to for days. Since home nursing is not considered as a part of home care now, this adds a constraint to the system, as ensuring proper care at home becomes difficult.

I have come across at least one case in which the marriage proposal for the daughter of a patient got fizzled out when it was known that the father had become terminally ill. People are still ignorant when it comes to certain diseases, which some consider as hereditary.

There was a case reported in which the principal of a college refused a request for blood for a terminally ill patient saying that he can advise his students to donate blood for only those patients who are not terminally ill. Ignorance pervades through educated people as well.

General apathy is another important hurdle we are facing everyday. While everyone lauds the efforts, they expect others to take the initiative due to a variety of factors.

Maintaining level of optimism:

The feeling of gratitude expressed by the relatives of patients in their hour of need and the resulting pleasure of happiness that a helping hand could be given to the needy keep us going in our efforts to be of assistance to poor and needy, in spite of the various odds faced by us.

The author of the above article Mr. M.P. Ravindranathan may be contacted at

Palliative Care-1

Sometime last month I came across an extensive write up about Palliative Care in The Hindu Sunday Supplement . I've always had this concept of Palliative care stuck in my mind when I first heard about it. I think it was when some physicians from Kottakkal were sent for training to Kozhikkode years ago. The point of interest being purely and simply some kind of empathy. As one advances in age, one tends to think of many uncertainities of life and more about being able to handle it with some semblance of serenity and maturity. After reading the article I was reminded of my uncle and aunt who are very much involved in Palliative Care Services in their home town.
I mailed him asking him to send me articles regarding Palliative Care in general and his experiences in particular. He readily obliged and I’m hoping to post his article mostly verbatim with his permission here .

Apart from personal curiosity, I thought that his words might prove to be enlightening and inspiring to many those who are not fully aware of the impact and importance of all that Palliative care entails. I think it to be of increasing relevance in today's society in more ways than one.

What is Palliative care?

Objective of this write up

The objective of this brief write up is to generate awareness about Palliative care to those who had not heard about it. It is not the intention to describe all aspects of the same as it would take considerable time and personal involvement to get to know the various aspects.

How the concept of Palliative care has originated?

Diseases can be classified broadly into two categories, those which are curable and those which are not curable. Curable diseases can be handled by the existing system of medical care, both in public and private sectors. However, the medical services offered by the state and by private hospitals do not take care of patients with incurable diseases, who deserve sympathy and understanding, as they are left to the mercy of the family which often finds it extremely difficult to attend to them. In most of the cases, such patients get bed ridden permanently causing anxiety; feeling of helplessness, financial strains etc., with the stark truth of only death as the only reliever, unsettling their family in all respects. The need for palliative care arises to take care of these “incurable” patients.

Let me start with the background on how the concept of Palliative care had its genesis. The primary reason is the fact that nowadays medical profession has become very much doctor and equipment oriented. No doctor goes to the patients; patients have to go to the doctors or hospitals. And the problem has been compounded due to the fact that treatments have become very equipment based, with lot of medical electronics equipment to be used right from the stage of diagnosis. Without using these equipments which are costly and hence beyond the reach of even very rich patients, who also have to go to hospitals or even clinics, no treatment is performed nowadays. This adds a lot to the strain even to those patients who are not permanently bed ridden. Then one can imagine how much will be the difficulties faced by permanently bed ridden patients who have to be transported to the doctors.

Another reason which has given momentum to this concept is that during the last 30 to 40 years, joint family system has vanished due to a variety of factors and single unit family system has come to stay. While both systems have their advantages and disadvantages, single unit family system has thrown open a peculiar problem where in old parents, who suffer from incurable diseases have been left to the mercy of their siblings who often ignore their own parents, may be due to their own employment or profession, financial constraints or any other social factors, which cannot be justified when viewed from a human angle.

The concept of palliative care was propounded by a well known nurse, Ms Cicily Saunders in UK in 1960. In western countries, the service has been called “HOSPICE”, with specialty hospitals as the centre of action. In India, this service had its beginnings in 1990 in ‘Shanthi Avedhana ashramam’ near Bombay. However a system based on hospitals is not suitable to third world countries like India. In Kerala, the first Palliative care clinic commenced functioning in 1993 in Kozhikode Medical College. When it was noticed that patients from far away placed cannot reach the hospital, localized clinics were conceived. The first clinic with community participation was established in 1993 in Nilambur, Malappuram district. Such clinics turned out to be very popular thanks to community participation, which led to the establishment of Neighborhood Network in Palliative Care (NNPC in short). Now, in Malappuram district alone, there are 25 such clinics. In the other districts of North Kerala, Calicut, Wayanad, Kannujr, Kasargod and Palakkad, such community oriented clinics are very active. There are at present more than 3000 trained volunteers in Malappuram district alone. More than 2000 new patients become the beneficiaries of palliative care, in each year in Malappuram district. Statistics show that more patients require this care and service all over Kerala.

It must also be mentioned here that the Malappuram initiative has become so well known that nurses and volunteers from other third world countries are taking training in Malappuram and Kozhikode clinics.

Who needs palliative care?

One can appreciate that non curable diseases like some types of cancer, damage to backbone and hence to spinal cord, brain damage due to tumors or stoppage of blood circulation, HIV positive patients, geriatric patients, cuts and injuries which do not respond to any medicine, suffering from high intensity pains etc. force many patients to get bed ridden, which disable them to perform even the basic necessities of life. They will need assistance even for taking food or going to toilets etc, which will have to be performed in bed.

In most of these cases, the patient gets declared as suffering from incurable after undergoing difficult, costly and time consuming investigations, treatments necessitating hospitalization for longer periods etc. These break the mental and physical morale of most of the patients and their siblings. Most of these patients break down in the face of the realities of life, when the doctor or hospital advises them that they can now go back to their homes without any further treatment possible.

Even though medical treatment to the citizens is recognized as a responsibility of the state, can one expect attention to patients falling under this category to get solace from the government? Here comes the need for community participation, only with which some relief can be given to these patients.

Problems faced by permanently bed ridden patients

1. Physical problems:

Continuous medication will be required to contain the physical problems. Medication will need to take into account peculiar and individual problems of each patient and conditions of his family. Injuries will need dressing up regularly. Who will do it, as nowadays even trained nurses do not visit homes.

2. Financial problems:

Treatment in hospitals is an expensive affair. By the time the hospital sends back the patients declaring the disease as incurable, the patient and his family would have spent a very large amount by way of direct and indirect expenses. This could even mean starvation and stoppage of education to their children and a host of other problems, thereby virtually breaking the family into doom.

3. Social problems:

Confinement to the bed forces the patient to cut all social contacts, thereby forcing him to withdraw to himself. He has to depend on others for each and everything. This gives rise to a host of problems in his life. He starts feeling that he is an unwanted being in this world and a liability for all, including his close relatives.

4. Psychological problems:

The factors explained in the previous paragraphs leads to psychological problems. One can visualize the problems that will be encountered.

5. Spiritual aspects:

There could be cases where the patient can start thinking on his existence and spiritual aspects coming to the fore, when faced with a realization that there is no cure for his ailment and he is forced to start visualizing his end worrying about the safety and existence of his own family etc.

One can realize that there are no medical remedies to the above problems except possibly the first one. However with the body and psyche so much inter-related the patient and his family find that they are in a no-win situation. Doctors can attend only 20% of the problems faced by the patient. The community can at least try to attend to the rest of the problems.

What can the Community do for such patients ?

In fact there will not be any situation in which nothing can be done to help such patients. There is no limit to the care that can be given to them. What is more important is that the community should have ‘eyes and ears’ and a positive attitude to help such unfortunate patients. Rest will follow.

Members of the community can organize the efforts to provide the care to the needy. Trained volunteers provide the leadership that is required for such efforts. Required funds, medicines, food, cloth etc. are all collected by the community. Outpatient clinics and home care visits are organized by these volunteers, who find out the patients who need such care. They visit the houses of the patients frequently to understand the specific needs of the patients.

Doctors and nurses who have undergone specific training in palliative care provide the medical care that is required. They attend to the patients (who can travel to the out patient clinics) and bystanders / relatives (of patients who cannot travel), who are given the necessary medicines with instructions. Depending on the number of patients, the out patient clinics function on one or two days a week. Home care visits are undertaken by nurses and doctors (depending on the availability) at regular periods to provide the medical help required and to understand the actual conditions of the patient and family.

Since the patients have been declared as incurable, it is practically impossible to cure them completely or alleviate all physical problems. The objective of palliative care is to reduce the problems which can be solved, as much as possible. The objective also includes enabling the patient and relatives to solve their problems as also provide required medicines and other materials and advise them how to use them, besides overseeing whether the care is utilized properly. For example, where dressing of wounds is required, the relative or bystander can be trained in doing the same. Similarly they can be taught how to maintain water beds etc.

Home care - the distinct feature of palliative care

What makes palliative care different from other treatments is the home care. Doctors and nurses provide only the medical care to the physical problems of only those patients who suffer most, as often it is impossible to visit all patients, due to the non availability of trained doctors. Volunteers provide the link with all patients. There are three types of home care, one is home care conducted by doctor and nurse, second is the home care conducted by volunteers under the leadership of trained nurses and third by local volunteers by visiting the homes of the patients.

The three tier home care helps understand the conditions of the patients completely thereby enabling the clinic to provide all care needed by the patient. This helps develop contact with the family which gets self confidence in caring the patient. This also helps the family escape the social aloofness.

The funds required for the efforts are found from small contributions, money collection boxes kept in shops and public places, monthly contributions from public etc. Many village panchayaths or other local govt. institutions such as district panchayaths provide medicines. Assistance or grants from government is not available presently. (the president of Malappuram district Panchayath took part in the nurses home care in a clinic once and his feelings forced him to set apart a very considerable amount for helping the palliative clinics in his district).

Volunteers - the backbone of Palliative Care

Every one can contribute his mite in these efforts. Every form of positive work is welcome, right from locating a patient and linking them with the nearest clinic, providing physical or monetary help, linking the patient with governmental agencies for getting documentation that can help them get disability pension etc.

No educational qualification is required to become a volunteer. What is needed is only a positive attitude to help others in distress. There are so many volunteers who cannot read or write well, or who are not financially sound. They can be of any religion or caste or political affiliation. All those who are interested in alleviating the problems of fellow human beings can become volunteers. It is not a work that is required to be done affecting our regular occupation. Those who can spare a couple of hours in a week in their leisure can contribute a lot by becoming volunteers.

In short, volunteers are the backbone of this service oriented system of care. Let me end this note with a well known quotation by Mother Theresa.

“It is not how much we do, but how much love we put in the doing. It is not how much we give, but how much love we put in the giving”


(Note prepared by: M. P. Ravindranathan, volunteer-coordinator of Ottapalam Palliative care clinic, Palakkad district, a division of Ottapalam Welfare Trust. Please visit their website: to get to know more about this trust and its activities)