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: www.owelt.org.in to get to know more about this trust and its activities)