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.
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.
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 firstname.lastname@example.org