JEEVODAYA - South India’s first Hospice
Historically Chennai has many firsts to its credit, especially in the field of Medicine. Jeevodaya is yet another feather in its cap, introducing Palliative care to South India. Jeevodaya Hospice was established in 1990, as a non-profit, non-political, non-religious, charitable organisation to render Palliative Care services, free of cost , to advanced cancer patients irrespective of caste ,creed or social status.
WHAT IS PALLIATIVE CARE?
Palliative Care is derived from the word ‘Pallium’ which means a’ cloak or a cover’.The original definition of Palliative Care by WHO read ‘ Palliative Care is the TOTAL, ACTIVE care of patients whose disease is no longer responsive to curative treatment’. It has since been modified. The latest definition is ‘Palliative Care is an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative Care:
• Affirms life and regards dying as a natural process
•Neither hastens nor postpones death
•Provides relief from pain and other distressing symptoms•Integrates the psychological and spiritual aspects of care
•Offers a support system to help patients live as actively as possible till death
•Offers a support system to help the family cope during the patient’s illness and in their own bereavement
•Uses a team approach to address the needs of the patients and their families, including bereavement counselling, if indicated
•Will enhance quality of life and may also positively influence the course of an illness
•Is applicable early in the course of the illness, in conjunction with other therapies that are intended to prolong life such as Radiotherapy and Chemotherapy and includes those investigations needed to better understand and manage distressing clinical complications
What is Hospice Care?
Hospice is derived from the word ‘Hospitium’ to indicate the friendly relation between host and guest. The practice started in medieval Europe in the 17th century when places of rest were established for pilgrims who could not continue their journey, where they were fed and nursed –it is quite likely many of them died there.The modern Hospice movement is however attributed to Dame Cicely Saunders who established St.Chrisopher’s Hospice in London in 1967. Rightly called the ‘Founder’ of modern palliative care, she was the first to combine scientific medical care to compassion while caring for the terminally ill. She coined the word ‘Total Pain’ to emphasize the multi-dimensional aspect of pain, namely physical, psychological, social and spiritual.In today’s parlance Hospice Care is used to indicate a philosophy of care rather than a place and is used synonymously with Palliative Care.
PALLIATIVE CARE IN INDIA
In India, at any given point of time, there are 3 million patients with advanced cancer and an equal number with other incurable illness. There is a sizable population of patients with HIV/Aids and the geriatric population is increasing every year- all of them in dire need of Palliative Care Services.Though Palliative care was introduced in India nearly two decades ago, it is still in its infancy with less than 1% of patients having access to palliative care.First the WHO and now the Indian Association of Palliative Care has taken over the responsibility of propagating Palliative Care in India, but we still have a long way to go.
WHAT DOES JEEVODAYA OFFER?
Though Jeevodaya was originally started for the destitute, the homeless and the abandoned –with the realization that anybody with a life threatening illness is indeed a ‘Medical Destitute’- we have thrown our doors open to anyone who may need our help, irrespective of their social status or the stage of their disease.
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Role of Hospices in India
Widows and spinsters are a deprived lot - especially the latter as no one feels morally obliged to look after them.
b) Disfiguring lesions of the head and the neck: Malignancies of the head and the neck make the patient look grotesque. With high prevalence of oral cancer - thanks to tobacco - some patients have half their faces missing. Adults and children alike dread to go near them. Unfortunately these patients have to bear the burden for long periods because these are slow growing tumors.
d) Superstition: Superstition is in the bone of every Indian, educated or uneducated - only the degree varies. Hence it is not surprising that for some at least, cancer is a curse of the God and the patient must be left alone to serve his karma.
a) Needing Pain Relief: Pain as we know is all pervading problem of cancer. The medical practitioners are largely ignorant of the use of oral morphine or, even if they did know, there is no access to the drug, unless it is in a specialised centre like a hospice. This is the current picture, one, which has to be rapidly changed, if not, thousands of cancer patients will continue to live and die in pain.
b) Wounds Needing Repeated Dressing: Some wounds are large with copious discharge and need to be dressed five or six times a day. This is not feasible in home or even hospital.
c) Bedridden, paraplegic patients and bedsores: Bedridden paraplegic patients with bedsores are always a challenge to the nursing profession. An institution like Jeevodaya alone can provide round the clock facilities like waterbeds, dressing, and individualised nursing care.
e) Ostomy care: Patients with ostomies generally are too weak to look after themselves and need somebody to help manage their ostomies. It is true that the caretaker can be trained, but for most patients, a caretaker, who cares is hard to come by.
f) Patients needing special nutrition: Some patients are on tube feeds or ostomy feeds. They need a nutritious diet to keep them going. The poor usually feed them with a dilute Kanji (porridge) or half-milk, half-water diet - these patients die of inanition rather than their disease.
India is a country of contradictions. The metropolitan cities boast of state of the art medical care - available to the wealthy few. The majority of the urban poor have to rely on the Government run hospitals, which are overcrowded, and busting at the seams. Palliative care is the least of their priorities. It is natural that they should devote their limited resources to patients who can be cured. There is lopsided concentration of doctors in the cities, but to see them one needs money and in any case the average medical practitioner is not aware of palliative care, for it was not taught to him in his medical school!
The hospice movement was obviously started by people who saw with their hearts, people, who not only saw, but, who reacted to the plight of these unfortunate people by reaching out to help them, as they limped along slowly and painfully, to finish the last lap of their lives for, finish, it, they must!
The hospice, a home away from home for terminally ill patients, is said to have originated in France several years' back and is a very popular concept in the western world. In England alone, a country which is smaller in area and population to many of our Indian states, there are around 200 hospices. Of late, however, they are steering away from hospice and moving towards home care. This is quite understandable, as these countries have developed an excellent health care system. With a manageable population, better socio-economic standards and higher literary background, a patient can very well be managed at home, if health care is delivered at his doorstep as it is done in these countries. This is as it should be, for there can be no place like home.
In India, on the contrary as in most third world countries, the panorama is entirely different and in no way comparable to the west. The hospice movement, or for that matter palliative care itself is still in its infancy in India. The first hospice "Shanti Avedna" was started in Mumbai in 1988. "Jeevodaya" the second hospice in India and the first of its kind in South India was registered in Chennai in 1990 and started inpatient care in 1995.
It is true that the family structure in India is such that the responsibility of looking after a patient rests with the family, but, to generalise and to assume that every patient has a loving family, caring for him or for that matter to assume that every patient has a family at all is to deceive ourselves.
We have studied the types of patients and the reasons for admission to our hospice and are convinced, more than ever, that there is scope to start many such hospices all over the country.
1) DESTITUTE PATIENTS :
Any one familiar with India will not question the existence of destitutes or the life they are forced to lead - their plight gets compounded when they are struck with a disease that cripples them so much that they are unable to fend for themselves.
Mrs. Sakunthala (name changed) was picked up by the police from the platform and admitted in a Govt. hospital, where we found her on the floor, near the toilet with not a yard of clothing on her. She had a massive fungating tumor of her breast, crawling with maggots - no one wanted to go anywhere near her. We had her transferred to the hospice where she was cleaned, clothed and made to look like what she was meant to be - a human being. She died peacefully in the hospice after a couple of days, surrounded by people who cared for her. The last rites were done by the hospice.
She is one of the many destitute cancer patients, whom we picked up on receiving information, some from the roadsides and some from the hospitals. Many others are brought to us by social workers. These patients constitute only a miniscule of the destitute population scattered all over the country and - if we do not care who cares?
II) ABANDONED PATIENTS :
Many patients are abandoned by their families, for reasons, that may be convincing in some, perhaps not others but still the fact remains that they have nowhere to go.
a) Poverty
Three hundred million Indians now live below the poverty line. There is an eternal struggle for existence, a scramble for the next meal. When a healthy person has to struggle to survive, a sick person does not stand a chance. The family transfers the patient to a government hospital, give a false address and then do the disappearing act.
Miss Banu (name changed) was a 14-year-old who had Ewing Sarcoma of her leg. She was one of five motherless children who had a drunkard for a father, who used her sickness to make her beg on the streets. When she became very sick, he admitted her in a Govt. Hospital. The child underwent an amputation of her leg, but when the time came for her discharge, the father was nowhere to be found. Efforts to trace her family with the help of local police were of no avail - she was transferred to the hospice, where she spent the rest of her days in as much peace and comfort as on can get under such circumstances.
b) Lack of living spaces
Often large families live in small spaces - huts or single rooms - and to have a patient with foul smelling wounds would be near impossible. The neighbors too start complaining, hence out of compulsion, these patients ate either driven out or abandoned in hospitals.
Mrs. Radha (name changed) belonged to the upper middle class and she had a loving family - husband, son and daughter who doted on her. When she developed cancer of the breast, the family gave her the best care, surgery, RT and CT in the so-called five star hospitals, but inspite of treatment, the disease progressed. When we saw her she was in a grossly advanced stage with frank gangrene of her arm and chest wall with pus pouring from everywhere. At that stage none of the private hospitals or nursing homes were prepared to take her in - and the neighbors (the family was living in an apartment) started objecting to the smell emanating from her room. The family were desperate for help - and that was when Jeevodaya stepped in.
c) Abandoned by spouses
Sad is the story of young women developing breast or cervical cancer. This is a good reason for her husband to forget her and turn elsewhere. Not that wives do not desert their husbands - many a time the wife runs away to her parents home, but the usual story is of the wife having to seek employment, often doing menial work to feed and clothe her children, leaving her with little time to look after her husband (if she does come to see him she often gets beaten up by the husband because he suspects her fidelity!)
d)Widows and spinsters
Widows and spinsters are a deprived lot - especially the latter as no one feels morally obliged to look after them.
Miss Parvathy (name changed) was a teacher in school. As long as she was earning and contributing to the family, she was a welcome member in her brother's house. However when she became bed ridden with cancer of the breast her brother insisted that his other sister should take turns to look after her and sent her there - where she was politely refused entry. Heart broken she found her way to the hospice.
III) PATIENTS SHUNNED BY SOCIETY
a) Large foul smelling wounds: Mrs. Kanthi (name changed) a patient with cancer of the breast complained that she felt nauseated all the time and could not eat - reason? She could not tolerate the smell emanating from her wound "if I myself cannot tolerate the smell how can I expect others to come anywhere near me" she mourned pitiably.
b) Disfiguring lesions of the head and the neck: Malignancies of the head and the neck make the patient look grotesque. With high prevalence of oral cancer - thanks to tobacco - some patients have half their faces missing. Adults and children alike dread to go near them. Unfortunately these patients have to bear the burden for long periods because these are slow growing tumors.
Miss Barthy aged 20 had a maxillary antral growth and her face was so distorted that even the doctors found it difficult to face her. She was a recluse in the house, confined to her room where no one except her parents would go. She felt so depressed that she stopped eating and was starving herself to death. It was at this stage that her parents brought her to the hospice. With all the love, care, and affection, she received there, she overcame her depression and became her normal self. She spent the remaining of her days in the hospice.
c) Ignorance: Ignorance born of illiteracy - it is estimated that India has the highest illiterate population in the world - approximately 500 million. To them cancer is a contagious disease and patients are kept in isolation - the usual story is of the daughter-in-law refusing to let her child go anywhere near a sick grand parent - who yearns for children's company.
d) Superstition: Superstition is in the bone of every Indian, educated or uneducated - only the degree varies. Hence it is not surprising that for some at least, cancer is a curse of the God and the patient must be left alone to serve his karma.
IV. INABILITY TO BE MANAGED AT HOME
a) Needing Pain Relief: Pain as we know is all pervading problem of cancer. The medical practitioners are largely ignorant of the use of oral morphine or, even if they did know, there is no access to the drug, unless it is in a specialised centre like a hospice. This is the current picture, one, which has to be rapidly changed, if not, thousands of cancer patients will continue to live and die in pain.
b) Wounds Needing Repeated Dressing: Some wounds are large with copious discharge and need to be dressed five or six times a day. This is not feasible in home or even hospital.
c) Bedridden, paraplegic patients and bedsores: Bedridden paraplegic patients with bedsores are always a challenge to the nursing profession. An institution like Jeevodaya alone can provide round the clock facilities like waterbeds, dressing, and individualised nursing care.
d) Patients with VVF & RVF (Vesico-Vaginal & Recto-Vaginal Fistulas): Patients with VVF and RVF are usually due to cancer cervix - the constant dribbling of urine and leaking of motion can be acutely embarrassing to the patient in the home environment and also difficult to manage.
e) Ostomy care: Patients with ostomies generally are too weak to look after themselves and need somebody to help manage their ostomies. It is true that the caretaker can be trained, but for most patients, a caretaker, who cares is hard to come by.
f) Patients needing special nutrition: Some patients are on tube feeds or ostomy feeds. They need a nutritious diet to keep them going. The poor usually feed them with a dilute Kanji (porridge) or half-milk, half-water diet - these patients die of inanition rather than their disease.
V. LACK OF MEDICAL INFRATSRUCTURE
India is a country of contradictions. The metropolitan cities boast of state of the art medical care - available to the wealthy few. The majority of the urban poor have to rely on the Government run hospitals, which are overcrowded, and busting at the seams. Palliative care is the least of their priorities. It is natural that they should devote their limited resources to patients who can be cured. There is lopsided concentration of doctors in the cities, but to see them one needs money and in any case the average medical practitioner is not aware of palliative care, for it was not taught to him in his medical school!
In the rural areas the doctors and hospitals are few and far between. The vast distances and poor transportation facilities prevent these patients from getting medical relief and let us not forget - India still lives in her villages.
All said and done, it is true that Hospice alone is not the answer for advanced cancer patients. It is only one of the modes of rendering palliative care, along with home care, hospital based palliative care units or out patients' centers. All these must go hand in hand and compliment each other for - there is a place for everything and everything in its place!
The common accusation against the hospice is - too much is being spent on too few. But we must also remember, quantity by itself cannot be a virtue, and quality often matters. Though India is described as land of poor - there is no dearth of the rich. If the latter's eyes and heart can be opened to the plight of their unfortunate brethren, I am confident and I speak out of experience - they are only too willing to come forward to help such projects in cash and kind. I am also of the firm belief that such projects should be the collective responsibility of the society - not always expecting the government to do it for us.
And speaking of too few - there is this story of the Starfish. One little girl was frantically throwing the starfish that were washed ashore back into the sea. When her mother asked what she was doing she replied that she was saving the life of the starfish by putting them back into the sea. Her mother exclaimed, "look, there are thousands of them. By putting back a few how is it going to matter?"
The little girl held the starfish in her hand and said, "it matters to this one" as she gently threw it back into the sea!"
Dr.Manjula Krishnaswamy
Hon Medical Director
Jeevodaya, Chennai, India
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