Thursday, June 25, 2009

CARE BEYOND CURE




When relieving pain is the priority…

For millions of patients with terminal illnesses, pain is an everyday reality. But with only two per cent of India’s population under the palliative care cover, we need to put a professional health service system and a well-defined policy in place.

It is imperative to use a multidisciplinary approach involving doctors, nurses, clinical social workers, psychologists, physiotherapists, dieticians and allied health personnel…


To die proudly when it is no longer possible to live proudly. Death of one’s own free choice, death at the proper time, with a clear head and joyfulness, consummated in the midst of children and witnesses: so that an actual leaving is possible while he who is leaving is still there.

Friedrich Nietzsche


The word “palliative” is derived from the Latin word “palliare” meaning to cloak or to cover. According to the International Association for Hospice and Palliative Care, palliative care is the care of patients with active, pro gressive, advanced disease, for whom the focus of care is the relief and prevention of suffering and maintenance of quality of life rather than striving to halt, delay or reverse progression of the disease itself or provide a cure. Originally, the term “palliative care” was synonymous with care for cancer in its various manifestations. Today, it is increasingly used with regard to diseases other than cancer such as chronic, progressive pulmonary disorders, renal disease, chronic heart failure, progressive neurological conditions and progressive infections such as advanced stages of Acquired Immune Deficiency Syndrome. In addition, there is growing awareness of the need for services geared specifically for children with serious illness, paediatric palliative care.

According to the World Health Organisation, the aim of palliative care is to improve the quality of life of patients with life-threatening illness, and that of their families. This encompasses all interventions that prevent and relieve suffering, physical, psychosocial and spiritual. Thus, with regard to pain, a common symptom of many progressive and debilitating disorders, a number of interventions in combination are useful. Drugs, both oral and intravenous for pain management; physical therapy to reduce pain, especially that relating to the joints, nerves or secondary muscle spasm; psychological approaches to help address grief, anger and guilt; emotions associated with terminal illness; and a spiritual approach that provides solace, helping the person cope better with the pain, thereby reducing the nature and quantum of human suffering. There is, therefore, a definite need for care providers to go beyond the conventional in providing care and solace to the dying person, addressing the varied dimensions of the human condition in the setting of chronic illness. Indeed, caring for the family in this setting is as important as caring for the ill person.

Hospice movement


Palliative care began in the hospice movement although it is now widely used outside the realm of traditional hospice care. Hospices were originally places of rest for travellers in the fourth century. In the 19th century, a religious order established hospices for the dying in Ireland and London. The modern hospice movement, credited to Dame Cicely Saunders, gained momentum in the United Kingdom after her founding of St. Christopher’s Hospice in 1967, and has grown dramatically in recent years. In India, Dr. D’Souza, a cancer surgeon from Tata Memorial Hospital, Mumbai, is thought to have started the first hospice, “Shanti-Avedna Ashram”, in the year 1986. Over the years, although there has been a mushrooming of such centres around the world, there remains a challenge of proportional provision of required services, especially in developing countries. There is also the challenge of meeting quality standards in palliative care. Key institutions like the Palliative Care Network; Asia Pacific Hospice Palliative Care Network (APHN); International Association for Hospice and Palliative Care (IAHPC) and the Indian Association of Palliative Care (IAPC) are involved in developing these resources, setting standards and influencing policy.

Significant burden

The World Health Organisation (1990) and the Barcelona (1996) declarations have called for palliative care to be included in every country’s health services. It is estimated that 52 million people die each year and a good proportion of them die with unrelieved suffering. About five million people die of cancer each year, to which can be added the numbers of patients dying with AIDS and other chronic infections who will benefit from palliative care. Add to this the number who suffer in terminal stages of non-communicable disease; afflictions of the brain, heart, lungs, kidneys, bowels, bones, joints and nerves; many consequent to lifestyle diseases. In developed and developing countries alike, people are thus living and dying slowly in unrelieved pain, with uncontrolled physical symptoms, with unresolved psychosocial and spiritual problems and in fear and loneliness. While this phenomenon has been widely reported and published, both in the scientific and the lay press, affirmative action in public health terms, to develop and provide services for people with terminal illness seems grossly inadequate.

Burden on the family


In India for example, the care of such individuals falls on the family, and the assumption appears to be that the family alone should take responsibility. Given our ethos and culture, while we would perhaps continue to make the family the focus of palliative care provision, it is critical that we understand and appreciate their need to be supported by health service providers and to ensure that such support is available, accessible, affordable and acceptable. At present, the efforts to support families of individuals needing palliative care are few and far between, many being cancer-led and NGO-based. All this places an enormous burden of care giving on families, and affects both their quality of life and their productivity. One comes across many young professionals who are forced to put their lives and careers on hold and care for their loved ones. With rapid urbanisation and changing family structures, there is an urgent need for the policy maker to focus his attention on developing adequate and appropriate resources that will support families of people with chronic and progressive illness. The relief of suffering is after all an ethical imperative for the healthcare provider and every patient with an active, progressive, far-advanced illness has a right to palliative care.

There is no one right or wrong model for the provision of palliative care. The best model is determined by local needs and resources. IAHPC believes that each developing country should be encouraged and enabled to develop its own model of palliative care, appropriate to the needs of the local patients and the available resources, taking advantage of the experience and expertise accumulated in developed countries, and not be expected to copy models more appropriate to affluent countries. The in-patient palliative care unit may be part of a hospital or an independent free-standing unit, community based, day hospice and/or day palliative care unit. A combination of these services may be ideal as it will give the patient and his family the opportunity to choose from a buffet, depending on their individual needs, rather than make do with what is available. In the Indian context, the development of community-based resources, including the training of primary care physicians, community health workers and relevant others in palliative care provision are urgently required. With the family being the focal point of care in India, training family members and developing supportive community resources may well be the ideal for us to aspire for.

It is also imperative to use a multidisciplinary approach involving doctors, nurses, clinical social workers, psychologists, physiotherapists, dieticians, and allied health personnel to cover all aspects of care. Such a holistic approach to care, encompassing all aspects of a patient’s suffering, is generally not regarded as modern medicine’s strength. Integration of the allopathic system with traditional indigenous medical streams that have innate palliative care based strengths; Ayurveda for example, may offer the person with terminal illness in India, a better quality of life. What is necessary, however, apart from developing awareness of this emerging need, is to develop health policy that will effectively address the gamut of palliative care needs in the years that come.


Dr. E.S. Krishnamoorthy is Director,

TS Srinivasan Chair and Senior Consultant

and Thadeus Alphons is a Clinical Social Worker

and Senior Research Associate at The Institute of

Neurological Sciences, VHS Hospital, Chennai. E-mail: esk@nsig.org


Guidelines to care-givers

Care-giving is a difficult and stressful process, one that can drain our energy and resources and test our resilience. Your ill relative may be battling with several emotions surrounding the illness and transmit these to you. You would do well to:


Try to accept the situation your loved one is in; focus on keeping her/him comfortable and stop constantly battling the cause once palliation has been chosen as the way forward.


Find an obliging local doctor who will support you in your intermittent needs; Once palliation begins, the relevance of the specialist diminishes considerably. Find a nursing service that can help you at least for half the time each day or through daily visits during which the more difficult tasks bathing; toileting; management of feeding and draining tubes etc. are taken care of.


Conserve your energy and draw upon all available resources to share the burden of care; no one can shoulder the burden of care giving alone, nor should they try to.


Find your own reference points - people you can share your emotions with; a shoulder to lean on. Your loved one can no longer do this for you, and yet you will have to be there always to support her/him.


Do not feel guilty about needing some respite or taking a break. It's important to take regular breaks in order to sustain effective care-giving. Continue to engage in your hobbies, meet up with friends, watch movies, read; in short doing things that give you pleasure.


Do not feel guilty about becoming angry (inside your head) with your loved one; or frustrated; or even feeling hostile at times. These are normal emotions that are brought on by the stress of care-giving. They are transient and will pass.


Do not panic each time there is a blip in your loved one's condition; remember palliation is about keeping a person comfortable and helping to maintain their quality of life.


One family member usually takes the lead in care provision; others play a supporting role. It's important that care-givers playing a supporting role learn to trust the judgement of the primary care-giver who is best placed to make decisions about situations as they evolve.


Remember, the effective care-giver is brave but not foolhardy. Do not hesitate to ask for help from loved ones and professional agencies.

--DR. ENNAPADAM S. KRISHNAMOORTHY AND THADEUS ALPHONS

BREEZE IN THE VALLEY OF PAIN



The comfort of assurance…

The palliative care movement is a silent social revolution that is sweeping across the villages of Kerala.



The rain, like a battered street dog, whined all night. Listening to the patter of raindrops on the banana leaves outside the window, Sameer wondered if the rain’s whine rhymed with the ups and downs of his pain. As the rain tapered off and the first rays of dawn filtered in through the broken window, Sameer’s face paled into a soft smile. “I’m alive to see one more dawn,” he sighed. After a huge effort, he managed to turn his fragile, cancer-eaten body to face the window. Then the pain erupted again. It pierced through every nerve and cell of his body, every finger and toe. The beast mauled him with a thousand claws. Sameer cursed God for the millionth time; and, then prayed to Him to take his life.

Sameer’s wife rushed out to ask the neighbour to call Haseena. Within an hour, Haseena arrived with her two colleagues from the Palliative Care Society. She put the doctor-prescribed morphine tablets in Sameer’s mouth. “The pain will go soon,” she assured him. The team turned Sameer to face the window and started attending to his bedsore. They kept on chatting with him even as they dressed his wounds, changed the “condom catheter” to help him pass urine, and told his wife to give the morphine tablets to him every four hours without fail. They handed the next week’s supply of medicines to the wife along with five kg of rice they had brought with them. “We’ll be back next week,” Haseena told Sameer as the team prepared to leave. “We will find someone to sponsor a water bed for you so that there will be no more bedsores.”

As he watched the three trek back the hillside and disappear, Sameer wondered how his poor family would have coped without the support of the Palliative Care Society. After three years of fight with cancer — several rounds of radiation and chemotherapy and months of hospital stay — his family was broke.


Silent service

Haseena and her friends are part of a silent social revolution taking place in Kerala’s villages, mainly in the northern districts of Malappuram, Kozhikode and Wayanad. The palliative care movement, born in the late1990s, has attracted thousands of ordinary people to the care of the terminally ill and bedridden people. And, tens of thousands of other common people make small donations to help the movement going. Trained volunteers like Haseena go to the homes of end-of-life patients and attend to their medical and psychological needs. “Since most of our patients are very poor, we have to provide not just drugs, wheelchairs and commodes for them, but often rice for the family, books and school fees for the kids and sometimes even clothes too,” says Haseena.

Sharafudheen Padath, a videographer who volunteers for a day every week for the Valanchery Pain and Palliative Care Society in Malappuram district, recalls how his unit once bought a pair of silver anklets for a five-year-old leukemia patient. A few days after she got her wish fulfilled, the girl died. The volunteers sit with the patients listening to their sorrows and fears. They also listen to the concerns of the family members and train them in simple nursing tasks. “Sharing of problems with the patient and the family is very important in palliative care,” points out Mohammed Saif, a pharmacist-turned-palliative care volunteer, who is now the State manager of the palliative care component of the National Rural Health Mission (NRHM).

The volunteers, coming from different backgrounds, serve at least two hours a week going on homecare visits, helping at the outpatient clinics and organising family help and raising funds. Most of the funding comes from the local people. For instance, in Nilambur, the crews of all the buses entering the local bus stand donate Rs. 2 a day, at the rate of 50 paise by each of the four crew members, to the Nilambur Pain and Palliative Care Society. Shopkeepers, autorickshaw drivers and schoolchildren all chip in.

Community participation in the management of pain and suffering of the chronically ill, called Neighbourhood Network in Palliative Care since 2001, is often referred to as the “Kerala model” (also, “Malappuram model”) internationally. “NNPC is a volunteer-driven people’s movement in which doctors and other healthcare professionals have only a secondary role,” says Dr. E. Diwakaran, director of the Institute of Palliative Care, Thrissur.


Global recognition

The movement has won global recognition and the WHO is now promoting it as a model for developing countries. “NNPC, with its focus on homecare, involvement of the community and the extension of coverage to many chronic diseases besides cancer, evolved in response to patients’ needs,” Dr. K. Sureshkumar, who heads the Kozhikode-based Institute of Palliative Medicine, recognised as a centre of excellence by the WHO, says. “It was a spontaneous evolution and was not planned by any single individual.” Volunteers, whom he calls the soul of the movement, had a big role in developing the concept, Dr. Surehskumar, who is one of the pioneers of the movement, adds.


Inadequate coverage


Thanks to NNPC, about 70 per cent of patients needing palliative care in the three districts are covered. Palliative care coverage in Kerala as a whole is 20 per cent and in the rest of the country it is just two per cent, notes Dr. Anil Kumar Paleri, honorary secretary of the Indian Association of Palliative Care. In Malappuram district alone, there are 29 palliative care units, and 25 of them have their own clinics with paid part-time doctors and auxiliary nurses and own homecare vehicles. Each unit serves several Panchayats.

It was the astounding success of the Nilambur Pain and Palliative Care Society, set up in 1998, that became a turning point in the NNPC experiment, says Dr. Mathews Numpeli, the programme executive of NNPC. K.M. Basheer, a farmer who has only studied till Class X, who had worked with the homecare unit at Manjeri, founded the Nilambur unit. Basheer was perhaps the first non-medical person to have headed a pain and palliative care unit in the world. In just one year, he had 60 trained volunteers and the ranks swelled in the following years. “A kind and caring heart and willingness to serve without any financial return were the only qualifications required,” Basheer says.

Following the Nilambur success, many such units opened in Malappuram, Kozhikode and Wayanad and, later on, in many other districts too. Panchayats and municipalities support the movement with money and buildings to locate palliative care clinics. Lately, the police also have joined in the movement and there is an ongoing project to train at least two policemen in each station as palliative care volunteers.

Recognising the importance of palliative care, the Kerala government has, for the first time by a government in Asia, come out with a palliative care policy. The policy emphasises the community-based approach to palliative care and considers home-based care as the corner-stone of the palliative care services. It also highlights the need for integrating palliative care with primary health care.

The challenge now for NNPC is to carry it forward to a people’s “total health care” movement.
-- N P K BASHEER

INDOMITABLE SPIRIT

She did not allow the diagnosis of MS to intimidate her …Instead, she seemed to get on with life, as if MS were an incidental inconvenience.


A s a physician I come across several people every working day, each representing a certain aspect of the human condition. Few of these meetings leave in me a lasting impression and it is one such experience that I recount here. I was called to see M rs. Santha Narasimhan for the first time a few months ago. Diagnosed in the mid-1970s as having Multiple Sclerosis (MS), an inflammatory disorder of the nervous system, she experienced progressive disability from the mid-80s, resulting eventually in her becoming largely house bound. Wife of a captain of the publishing industry and a tennis player of some repute, she had in her hey day donned many an impressive avatar, with a wide circle of friends and relatives. This wide circle remained closely aligned with her, judging by the number of visitors anxiously hovering around, each time I visited. That she was widely loved and revered was clearly apparent in the devotion she inspired in her family and friends. What amazed me most about this lovely lady of over 80 summers, however, was the indomitable nature of her spirit.

She did not allow the diagnosis of MS to intimidate her. Instead, she seemed to get on with life, as if MS were an incidental inconvenience. She did not view herself as a patient; more as a host receiving graciously a stream of visitors, including medical professionals like myself. She did not take on the sick role. Instead, she remained, until the very end, independent in her choices — her home, her devoted staff, her furniture, its arrangement and her daily activities. She did not wither with the travails of her illness: pain, disability, dependence and incapacity, all of which can reduce greatly the dignity of the human condition. Instead, she seemed to accept her declining health with all the cheer she could muster, dignifying it and everything around her, in the process. Other patients would wait for me to ask “how are you”? With Mrs. Narasimhan it was always her asking me, first, how I was, and enquiring about my family. From insisting that her family was present for doctor visits, as a courtesy to the doctor; to ensuring that those who visited her were received and well cared for, no detail missed her unwavering attention. Indeed, when I last met her on Deepavali day, she insisted on giving me sweets to take home, despite having suffered a painful injury to her foot, which had just been dressed by my surgical colleague. Sadly, that was the last time we met.

We medical men are fortunate to learn many lessons every day, from the patients we have the privilege to care for. Mrs. Narasimhan taught me the most important lesson, by far, that I have learnt to date; the indomitable nature of the human spirit and its inherent capacity to triumph over disease and disability.





DR. ENNAPADAM S. KRISHNAMOORTHY

LEADING THE WAY



In trusted hands…

Shanti Avedna Sadan, India’s first, and probably largest, hospice is an inspiring community effort.


Every bed overlooks the sea in Shanti Avedna Sadan, India’s first hospice to take care of the advanced and terminally ill cancer patients, set up in 1986. Run by a trust of the same name, it is entirely free for patients. Earlier called Shanti Avedna Ashram, the name was changed in 2003, as “ashram” gave out wrong signals to people that this was a place to dump patients, explains Sister Siena, hospital administrator.

Located opposite the Mount Mary church in Bandra, the hospice has recently expanded to 100 beds from the 50 earlier. It is a palliative care centre and provides medicines, food, clothes and occupational therapy for those inclined. Two doctors form a part of the 50 members of the staff, 30 of whom are voluntary. Dr. L.J. De Souza, a cancer surgeon at Tata memorial hospital, founded the hospice to ease the misery of patients who were either sent home or left on the street to die.

Keeping them comfortable

Run entirely on donations, the hospice could well be the largest one in India now, says Sister Siena. With the expansion, there will be some focus on research and alternative medicine. Patients come from all over the country and here the emphasis is on keeping them comfortable and giving them love. “We get people from all classes and communities and it is both a hospital and a home for them,” she says. There are facilities for indoor games, occupational therapy, handicrafts and music but many are too sick to do anything. In the women’s ward, beautifully lit by the evening sun, women sit and knit or do cross stitch. Each bed can be cordoned off by curtains for privacy. Some of the women have been here for a year or so. Sister Siena says, “When it is not possible to cure people, this is the best thing we can do for them. We also help the families reconcile with the person’s condition. When patients come here, they are still in a state of rebellion, especially if they are young. It is not easy for them to accept their situation.”

Special care

While most patients are in the ward, the more serious ones are given separate rooms so that their family member can also stay and care for them. There are 40 such rooms. Most people are visited by their families and rarely do they dump them. Some of the patients have to be tube fed or have frequent nausea spells. “In the hospice we focus on tender loving care,” smiles Sister Siena. There is only one thing she had to get used to, the frequent deaths — at least two or three people die every day. “In a hospital you get the joy of seeing people recover, here the staff has to contend with the opposite. The joy lies in giving the people happiness in their dying moments,” she smiles.

The hospice, though run by a trust, is a community effort. As you walk around, you can see that even school children have contributed to it. In fact, on the day it was inaugurated, “The School’s Ward” was opened by a young girl from Canossa high school which had made the highest contribution to the hospice.
--MENON MEENA

VITAL SOCIAL NEED



It takes skill and compassion…


Palliative care’s viability cannot be judged by commercial models, say experts who look at the current scenario in Chennai.




There is an increasing number of advanced diseases, beyond curative stage, that need care. About 80 per cent of cancer patients come for treatment in the advanced stage. This is a burden to hospitals, as there is a shortage of beds for such patients. These patients also need a multidisciplinary team and constant care. Modern palliative care centres are not homes for the dying. They take care of patients with the complete medical team, psychosocial workers, physiotherapists and counsellors, to improve all-round quality of the patient until the end comes.

Not enough

In India, there are around 72 Hospices with the south accounting for over 67 per cent. Considering the incidence and the demand, there is a long way to go.


Apart from this, there are problems palliative care specialists like us have to contend with every day: Non-availability of morphine and other relevant palliative drugs; lack of professional education and therefore, professionals in the field; lack of adequate training in syndromic management of chronic diseases, particularly for medical officers; lack of resources to train health workers in needed numbers; lack of public awareness on the subject; lack of proper understanding of policy issues relating to care of terminally ill or cancer pain relief and the general fear that use of opiod drugs may encourage drug abuse.

The government has to have a more rational policy on morphine usage and its availability for palliative care providers. The current regulations make it extremely difficult for patients to get access to medication for the management of pain.

Indian health insurance companies too need to recognise palliative care since it has significant cost savings without compromising on the care provided to patients.

There is a huge demand-supply gap in healthcare infrastructure which makes it very difficult for hospitals to cope with the demand for beds. The cost of care delivery is also on the increase. Healthcare service providers need to recognise that palliative care is one way of ensuring that the terminally ill patients get better quality care with significant reduction in costs.

Most importantly, palliative care is a social need and cannot be evaluated based on the conventional, commercially viable models. There is a need for subsidies by way of free land and financial support to establish more palliative care centres. The benefits of establishing more palliative centres is that we will be able to provide focused care for the chronically and terminally ill patients at the hospitals, and there would be more beds available for patients who need curative care.

Dr. Republica Sridhar, RMD, Pain and Palliative Care Centre, Chennai.


It began in 1991, when we took in an old man who was lying in the gutter and started our home for the destitute elderly. Since then, 64 people have died here and six of them, of cancer. More recently, we took in a Nepali woman with cancer and in grea t pain. Her cries of pain disturbed others in the senior citizens’ home and we found we could not provide her medical care.

A couple of my students are oncologists at the Adyar Cancer Institute (WIA), so they helped out initially, but looking at our numbers, they suggested that we set up our own palliative care centre, providing the range of facilities for people who are terminally ill.

The facilities for palliative care are better in Kerala. We were looking for nurses and finally, chose two people and sent them to Jeevodaya for training.

Fr.V.V. Paulose, managing trustee, St.Thomas Charitable Trust.

(Fr. Paulose is currently involved in raising funds to set up “Abhayam”, a palliative care centre.)


As far as palliative care in India goes, there are serious issues in the areas of awareness, education and training.

Firstly, no doctor wants to work in a palliative care set up — not only because there is no money involved in it, but also there is nothing much the doctor can do, curatively. So palliative care is the last of the specialities one chooses. There are a few correspondence courses and certificate courses that are being offered, but we are looking for an inclusion in the medical curriculum.

Strangely, India is the third largest producer of opium and we have problems getting our hands on the drugs. While availability of oral morphine has been made simple with the amendment of the Narcotic Rules, there are still problems with procuring injectible morphine.

It is key in the management of the terminally ill, whose pain, on a scale of 0-10, will be at 8, 9 or 10. Relieving pain is paramount and only morphine can do it. With morphine and palliative care, patients can live a fairly long while with a tolerable quality of life. Again, morphine is not available at the Primary health centres and at district-level government hospitals, leaving the rural areas nearly bereft of any palliative care facilities. We are struggling to raise funds to set up institutions in rural areas.

There is also the issue of the “point of crossover” — when does one move from curative to palliative care? It is a point of debate with doctors. When people come in at end stage when no treatment can help them, it would be better if doctors and family members realise that the patient has entered the palliative care stage and provide that kind of care.

Social stigma

Stigma continues to be huge. There was a case where a husband thought his wife’s cancer was contagious and isolated her at home. We have also known of a family where the girl’s marriage was called off when the groom’s parents found the father of the bride had cancer.

We get very little support from the government, raising our funds largely through public donations. Our expenses are huge — salaries, fuel for transportation (home care), morphine, blood and blood products and other medical consumables. The service we provide our patients is totally free, though some people pay for buying consumables.

Deepa Muthiah, Dean Foundation


The biggest need of the hour is to recognise palliative care as a specialisation — an MD Course. It has to be incorporated into the medical syllabus and we are meeting with the Indian Medical Council to incorporate the basics of pain management and general psychiatric counselling in the medical curriculum. It is also important to bring it into the nursing curriculum.

Through the Chennai-based Lakshmi Pain and Palliative Care Trust, we are conducting courses in palliative care, for batches of 20-25 at a time. In Tamil Nadu, we have already met the Health Secretary and he has given us the go-ahead to start a training course at the government hospital. We are soon going to begin an eight-week course, with 10 days clinical training at Government Royapettah Hospital, for MBBS graduates.

--RAMYA KANNAN

SMALL BEGININGS


Hard-won peace: A patient at a hospice.
In Andhra Pradesh, palliative care, with a few pioneering exceptions, still depends on the support structure of the family.


The absence of hospices or such services leads terminally ill patients to be tended at home as they simply cannot afford hospital expenses.



“Thanks to them, I could get tremendous psychological boost. They are doing remarkable service,” remarks a retired septuagenarian, who is among the 100-odd terminally ill cancer patients receiving home-care support in Hyderabad, from Dr. Reddy ’s Foundation for Health Education.

Launched as a pilot project as part of Dr. Reddy ’s Corporate Social Responsibility, “Life at your door-step” aims to provide “holistic” support to such patients — both physical and emotional — during a very stressful and difficult period, says an official in the Foundation, who did not wish to be identified.

Providing relief

The innovative project provides palliative care through symptom and pain management and seeks to re-assure patients that life is not burdensome despite devouring illnesses. It is a kind of mobile hospice designed to provide relief to patients who are unable to travel to the hospital due to financial, social or medical reasons. Only a fortunate few receive palliative home care support in Hyderabad. However, the virtual absence of hospices or such services elsewhere in the State leads terminally ill patients, particularly from poor families, to be tended at home as they simply cannot afford hospital expenses.

Take for example the case of Subbulu, a casual labourer from Ongole town, whose 37-year-old son, a municipal councillor, is battling leukaemia at an advanced stage at the Indo-American Cancer Institute and Research Centre in Hyderabad. Thanks to a grant of Rs. 1.37 lakhs from the Chief Minister’s Relief Fund, the family was able to cope with the resultant expenditure. “We will keep him here if there is a cure or take him home”, he says dejectedly. Subbulu lamented that most hospitals in smaller towns turned away such terminally ill patients without “giving even a tablet to ease the pain”.

With practically no hospices, there is a crying need for setting up palliative care centres all over the country, says Dr. G. Durga Prasad, a specialist in cancer pain management and palliative care. Dr. Prasad, an Assistant Professor of Radiotherapy at the Government-run Mehdi Nawaz Jung Institute of Oncology & Regional Cancer Centre, said that a separate department for palliative care was started at the institute with the help of International Network on Cancer Treatment and Research, American Cancer Society and Pallium India.

Pointing out that palliative care starts right from the time the patient is diagnosed with cancer, he observes that, “Difficult as it indeed is, we try to give the bad news as comfortably as possible”. Initially, the focus is on curative treatment, but as the disease progresses, palliative care becomes very important and continues beyond the patient’s death. The members of the bereaved family are provided emotional and psychological support.

Dr. Prasad points out that the Kerala Government had made palliative care a part of its healthcare system and sought a similar policy to be implemented on a countrywide basis. The concept of hospices has not quite taken off in India, he feels, essentially because palliative care is more of an unknown territory in our healthcare system. Another reason for the absence of hospices is because of the fact that it is primarily a Western concept. In the West, the family system has broken down as a support structure. But, this is not true of India where the patient receives a lot of family support right from the moment the disease becomes known. In hospices, the patients feel lonely and homesick.

Dr. Prasad said that plans were afoot to develop community-driven palliative care centres in rural areas in Andhra Pradesh on the lines of Kerala.

Providing service

Disagreeing with this line of argument, Dr. M. Subramanyam, an anaesthesiologist, says hospitals are not interested in establishing hospices not because the idea is Western in nature, but because “there is no money in it. Hospices are more like service centres. That’s why nobody is keen to start them.” Dr. Subramanyam, who runs Axon Anaesthesia Associates Private Ltd., says that his company was planning to set up a hospice in Hyderabad with the help of philanthropists. “Having a hospice will help people save money to a large extent. Typically, in end-stage cases, there is no point in keeping a patient in the hospital as it will be a drain on his resources,” he comments.

Describing palliative care as “adding life to months and not months to life,” Dr.Ch. Mohana Vamsy, Director, Indo-American Cancer Institute and Research Centre, says the first priority should be to take care of patients who are curable, particularly children. The next area of attention should be to create exclusive facilities for the terminally ill.

Dr. Durga Prasad says guidelines conforming to WHO norms would be framed in three months to help hospitals and other organisations establish palliative care centres.

--Y.MALLIKARJUN

SANJITA'S STORY



Pritish has turned his back on his career to look after his sick mother. It has made him realise how important relationships are, he says…

“I once drove a bus in Srinagar. The driver sat next to me and gave instructions. All the school children were screaming away in fright,” laughs Sanjita Mazumdar. “I told the bus driver I could drive a jeep and sometimes took my children out of Mumbai.” Sanjita’s memories of a school teacher keep her morale up. “I’ve done everything I wanted to in my life, now God is calling me,” she says.

Diagnosed with terminal lung cancer in December 2007, 65-year-old Sanjita says, “God gave me cancer but also a son who has sacrificed everything for me.” While her daughter and son-in-law too are supportive and caring, it is Pritish, her 36-year-old son, a 3D animator by profession who is by her side day and night. Married since three years, his wife Vidhya works as an instructor in gemology. Pritish, who is also a trained pilot, has not been focusing on his work the last few years. “My wife takes care of the finances and I care for the home,” he says. First his father-in-law was struck by paralysis and he nursed him till his death two months ago and now his attention is fully centred on his mother. He even installed a computer in her room so that she too can read from the Net and share things. Sanjita was a Math teacher in Mumbai for nearly 40 years, and after she retired she went to teach in a private boarding school in Barusaheb in Himachal Pradesh. She developed a bad cough after one-and-a-half years, and she had to come back for tests. Pritish says that the doctors were not in favour of chemotherapy or an operation and so she is being nursed at home.

“My mother is very strong willed and she has gone through a lot of hardships to educate us and make us what we are,” he says. Sanjita has a tube inserted into her lung to drain the fluid which keeps accumulating there. It is very painful for her to sit up or walk around, yet she does everything by herself. She even cooks at times, assisted by Parvati, her domestic help. “I promised I will recover and I want to tell people not to get scared of cancer,’ she avers. Her son too says, “Eighty per cent of the battle is with your own mind. The disease plays a mind game with you. When you conquer that fear, you have conquered the disease.”

Pritish calls himself a doctor without a degree. As a care-giver, he has a simple mantra: don’t panic. “Do you panic when you have a cold? Treat cancer like any other disease. I have faith in my mother and we take each day as it comes,” he says. The treatment for Sanjita costs around Rs. 30,000 a month. “There is a lot of pressure on my daughter-in -law and my medicines are very expensive. We are thinking of approaching a Non-Government Organisation (NGO) for financial help. Cancer is a rich man’s disease. It also eats your money,” Sanjita says.

After the initial shock, Pritish decided to take things into hand and charted out a course of action for the day with due attention to diet, rest and exercise. “A high protein diet is a must. Keep the person busy, distract them with news, information or discussion. It’s a bit like table tennis — you have to keep bringing the ball back, give an emotional boost at times.” Sanjita does Sudoku, reads the newspapers and religious books and watches movies. It removes the scare of death, she feels. She and Pritish also read near-death experiences downloaded from the Net. “I was very shocked by the news at first. I am an outdoors person. I was very fond of trekking and loved the mountains, that’s why I went to Himachal. I want to live for my family as I am very deeply attached to them,” says Sanjita, her eyes brimming with tears.

Lesson in humility

For Pritish, looking after his mother has been a lesson in humility. “It’s taught me not to take life for granted. I don’t have any regrets about not pursuing my work. I have not lost anything; on the contrary, I have gained a lot. I have realised how important relationships are and I saw a lot of things which I would not have done otherwise. My main objective is to make life easy for my mother. She should not suffer any pain. So I read out things to her, inspiring stories, sit and talk to her. Emotional support is the main thing, apart from a lighter way of looking at things,” he points out.

As a result, Sanjita has gained in strength; she tries to ignore pain and never says she is sick. Pritish was not too keen on keeping a nurse, not for the money but he feels that the personal touch is missing. At her age in any case Sanjita feels that one must be prepared for death. “Your mind never gets weak, even if your body does,” she smiles. And her son agrees.

Sanjita passed away a month after this interview was conducted. Pritish says, “She fought till the last minute. I was with her till the end
--MEENA MENON

THE JOINTLESS FAMILY



Familial equations: Redefine structures to ensure the family’s survival.

The unhesitating reply of many urban Indians, when they are asked to define the most unique identifier of ‘Indian culture’, is “the joint family”. I am never really sure whether they actually believe this or whether they assum e this to be the politically correct response. If indeed they believed it, their attitudes towards their families should be far more venerating than psychotherapeutic experience, contemporary literature, performing arts, and media reports would have us believe. I believe it to be an unconsidered response motivated more by a sub-conscious sense of guilt, for the joint family in metropolitan India has been a visible casualty in the course of the process of national development. In fact, as a practicing psychotherapist, I find that over the last ten years or so, the greatest stress factor in modern urban life is the family — an institution that has been the bedrock of Indian life over the centuries. Our leaders continue to lament the breakdown of the joint family in the country, exhort us to return to “Indian cultural values” and resurrect the joint family. But is this possible? Or, hold your breath, is it even necessary?

Historical necessity

The joint family was a historical necessity. Centuries ago, when environmental uncertainty was very high, when people were beginning to expand their geographical horizons, the village-community progressively became too large or too nebulous an entity to provide emotional support to individuals. The latter, who had a strong need to belong to a group of familiar and supportive people, looked to the joint family to fill this emerging void. And the joint family responded admirably to the situation. It served the role of parent, protector and nurturer, and by harnessing collective wisdom, created an enabling environment to permit the growth and development of its constituents.

To perpetuate itself, it had to evolve a strict code of conduct, clearly delimited individual roles, a prescribed power structure and unstinting subordination to the nominated paterfamilias (or, in some instances, the materfamilias) for it to be able to perform its function. But, as midnight’s children and grandchildren started appreciating their need for individual identity, the restrictions placed by the joint family were not easily manageable, and therefore the extended family (parents living with one married child and grandchildren) made its appearance, This seemed to, temporarily at least, satisfy the individual’s need, and guilt was kept at bay. Unfortunately, extended families, unable to shake off the hangover of their origins from the rigid joint family, began to function like downsized joint families. The dynamics were similar: The benevolent or tyrannical paterfamilias, the power structures, the subordination to the head of the family, all continued, though in a mildly diluted form.

But, in 21st century India, economic realities, practical considerations and the demands made by the process of identity development, all inevitable aspects of the process of maturation of a culture have already started gnawing at the institution of the extended family. More and more people are becoming dependent on their nuclear families to provide them whatever support they require. The joint family with its rigid structures or the extended family with its uncomfortable undertones has become more like albatrosses than the facilitating agents they were designed to be. Even in extended families, active jockeying for the coveted position of Head of the Family takes place, with the incumbent often finding it extremely difficult to relinquish the reins, even when economically dependent on the heir-apparent for survival. This often results in messy and sometimes Machiavellian power struggles resolved only by the passing on of the former. The situation is, of course, more critical in urban and peri-urban India, but given the rapid pace of development, it is not unreasonable to speculate that, over the next few decades, the problem may become more severe in rural India too.

Subliminal bonds

As a result of all this, equations within the family are not defined by mutual respect, as successful relationships should be, but more by some subliminal filial bonds that are expected to magically hold the unit together. They do not, because they cannot. Does this mean that the only possible future scenario is large numbers of broken families and elders abandoned by callous children? Not if we see the writing on the wall, get our collective acts together and actively redefine the institution of the family, just as we are attempting to do with the institution of marriage. One can actually visualise a scenario where families become more functional and their members engage in more mutually respectful relationships than has been the case in the past, provided the focus shifts from the individual having a relationship with the ‘family’ as an entity to having more conscious relationships with the constituents of the family. Only then can the family emerge as a more substantial unit of social support than the hollowed out institution it appears to be today.

It is the search for mutual respect that places a burden on the perpetuity of the family as a functional unit. But it is this same search for mutual respect that is finally going to ensure that the family survives as a unit, even if in a redefined form. For relationships to become mutually respecting, the fundamental requirement is for the individuals within them to be objective about each other. No longer can the parent-child relationship function in a parent-child mode. By this, I mean that the adult offspring should be able to relate to the parent as one adult would to another. Equally critical is for the parent to engage in a similar process. The child needs to cut the umbilical cord completely and the parent needs to ‘emotionally let go’ of the child and facilitate this process. Likewise siblings too, need to start relating to each other as adults and not with the same patterns that they have been used to since childhood.

Mutual respect

But for this to happen, we need to change the way we look at the institution of the family. Rather than look at the family as one large umbrella identity that requires rigid disciplinary processes to survive, we need to start thinking of the joint family as a cluster of nuclear families. Each nuclear family unit may have its own unique processes that distinguish itself from its counterparts. And each of these units needs to be respected as an organic entity that has every right to pursue its own stated aspirations, even if the other units in the cluster have a differing perspective. Such a redefined joint family, provides support to its constituents by learning to respect the space required by each of its constituents — a federalisation of the joint family, if you will. The end result is an apparently joint-less family, that is nevertheless jointed, not by virtue of a common genetic structure, but by virtue of mutual respect.

The redefined family, that builds itself on a satisfying present than on just a shared past, has the potential to construct an optimistic future. But the process of redefinition needs to be undertaken actively and consciously. It will not happen miraculously. There is, of course, one other way of dealing with the family: Keep chugging along and hope that something will happen to change things dramatically, or that with advancing age everyone settles down to mutually accepting and acceptable patterns of behaviour. Does it work? I have no evidence that it does. But the choice is ours. Hopefully, we will choose wisely, thereby preserving the integrity of the special Indian institution — the family, instead of constantly lamenting its breakdown.
--VIJAY NAGASWAMY

Monday, June 22, 2009

HEADING THE OTHERWAY


Creating the space for things other than success…

In these days of intense competition, living simply also means learning to climb down the ladder of success.

The number of letters I received in response to “Living A Simple Life” made me realise that there are many who follow the rules of simple living, and even more, who desire to do so. For simplicity to work as part of the ahim sa way, many felt that there has to be a spiritual element to it. Mr. Sreedharan pointedly asked, “What merit is there in giving away what I am not intrinsically fond of? One must give away what one loves most.”

What does one love the most? It is the self — so getting rid of the harsh parts of the self that one loves and clings to …the anger, bitterness, jealousy, .greed, possessiveness, prepares us inwardly for an outwardly simpler way of life.

In these days, when life is about climbing the ladder, being on top, in control, being the strongest, the best, being “right” and, ultimately, judging and competing with others, this inner preparation is necessary to be able to give up those outward things which seem to hold our hearts.

The way down

When everyone is wanting to climb up the ladder to cling to power, and be in control, living simply, is also “climbing down the ladder”. Mr. Ananthu and his wife relate, “We shifted from our professions — she was a professor, I was in the corporate world as a software engineer — to a simpler life. For 15 years, we were at the Gandhi Peace Foundation in Delhi, then we set up ‘Navadarshanam Trust’ and shifted to a village in TN, and have tried experimenting with eco-restoration, simple housing, farming, health and food and energy.” There are many more like them who have willingly given up powerful positions and lifestyles, to “climb down”, to share their knowledge and skills with those who are poor and marginalised. Part of “climbing down” is to recognise that there is a vast section of society that needs us and doing something about it.

Along with simplicity comes freedom. The freedom that enables us to be ourselves without the pretence and support of all the material things that surround us. The freedom to accept ourselves as we are, without wanting to change because of what fashion or adverts suggest. The freedom, too, to relate to each other as human beings, without being self-conscious or wary of the other. At the local corner shop where I buy vegetables, the vendor knows me and asks almost a hundred questions about my family. I in return ask about his. It takes time. Next to me is a lady who is not angry or threatening me because we take so long, but is friendly and curious as she asks me how to cook the gourd I have just bought. I tell her the recipe. The freedom of just being able to talk to each other and treat each other as human is facilitated by the grocer who has made simple living an enviable art. Here, time is to be spent bonding. “You can’t pay today? No problem, pay tomorrow or whenever,” he says. Those who have the freedom that comes from living like this, wear it about them like an attractive shawl. We admire it and want it so much for ourselves, but find that it is not for sale.


Acts of compassion

One of the products of a simple life is tenderness — a word we don’t often use these days. For a simple person, tenderness comes easily. My driver is a man from a small hill-top village near Vellore, where people still matter to each other. One day, during the summer, I stood in a long queue which snaked out into the road. I had a bottle of water tucked into my arm. An old man with dry lips came up and asked me for some water. The well-to-do men and women standing in the queue beside me told me not to give him any. “The minute you give it to one person, another will come up and there will be no end.”

Well, I did give the man some water, and within a few minutes, more raggedy, old people circled me. My driver, standing nearby, had seen what happened. He quickly went to the nearest shop and returned with several bottles of ice cold water, which he generously distributed to the old folk. Their faces lit up at this unexpected treat. Each one now had a whole bottle of deliciously cold water. They pressed the bottles to their faces, and revelled at the iciness. Some washed their hands and faces pouring a tiny bit on to their hands and splashing it all over themselves. They even sprayed it on each other, squealing as the chill water hit them. It was wonderful to see.

Later, I asked my driver what had made him do such a thing. “I too have a very old father and mother,” he said. “I thought, what if it was them, walking around in the heat.” Then he added shyly, “Actually it is my birthday today and my sister gave me some money to buy a shirt. I don’t need another shirt,” he said. Tenderness like this towards others comes from having a heart that always beats with compassion, and shows us humanness in all its pain and beauty.
BE WHAT YOU WANT TO BE.....
The hermit on a mountain lives a simple life, but he doesn’t have to struggle the way we do with busy lives and complicated relationships, so there is little merit or challenge in the kind of life he leads. For us today, the challenge in leading a simple life is to become people who can give away their most precious possessions to those who need it, and still feel content and rich; feel deep compassion for those who need it and still feel the vulnerability of being open and sensitive to others; and to live with the freedom to be what we want to be, rather than be moulded by consumerism and advertisements.

Living a simple life like this is not easy. It will not eliminate the complexity of our modern life to which we are all bound to some extent. But if we try, what it will do, is to allow us to live in harmony with all the complexities around us, so that we do not feel fragmented and soulless.
--USHA JESUDASAN

SELLING ONE'S CHILD




Still in a haze: Shyamlal (above) and Lalita Tandi (below).

Shyamlal and Lalita Tandi hit the headlines when it was ‘exposed’ that they had sold their child. The incident as it happened, from the couple’s perspective…


For a brief moment, a humble, impoverished dalit couple from Bolangir district of Orissa, Lalita and Shyamlal Tandi, acquired national infamy. The press carried a series of sensational stories of how the parents had sold their girl child Hema for a f ew thousand rupees, and there was wide official and public outrage and anger. The opposition lashed out at the State government in the legislative assembly. Ministers scolded district officials. An embarrassed ruling coalition responded by requesting the speaker of the assembly to personally investigate the child sale.

In a few days, amidst a haze of dust, an impressive convoy of official white ambassador cars, with flashing red beacons and peremptory sirens arrived in the startled remote hamlet Kundaputula. The pilot jeeps led them to the earthen home of the guilty parents. The speaker, aided by members of legislative assembly, senior officials of the State and district government, and local politicians, threw a volley of questions at the couple. “Why did you sell your child?” they asked accusingly. The man, Shyamlal, squatting in a corner on his haunches, simply stared. Looking stunned, miserable and shamed, he was speechless in his defence. It was the mother, Lalita, who, weeping inconsolably, tried to explain: “None of us would have lived, neither our daughter Hema nor us, if we had not sold her.” She intoned repeatedly, “We had no other choice.”

No sympathy

But her interrogators were not at all convinced. “Just because you are poor, it does not mean you sell your child. What kind of parents are you?” Lalita sobbed in reply, “It was because we loved our daughter so much that we sold her. Do you not understand? We sold her because we loved her.” Not one among those who had gathered for a transient moment, like a flash in a film, in that unfortunate hovel, indeed could understand.

It was not so difficult when Shyamlal was still strong in body. They owned barely half an acre of an un-irrigated upland farm, and it bore for them most years just enough gurji or coarse millets to feed the family for at most a couple of months. But even this lifeline betrayed them in successive drought years. There was no regular work in the village, so they migrated for seven years to the steel city of Bhilai, in neighbouring Chhatisgarh. They were employed at a construction site, and built a makeshift home of piled brick walls and a stretched plastic sheet for a roof. Lalita laboured side by side with Shyamlal, and together they earned enough to feed their three children, and even set aside some money. Hema at that time was just a baby.





Their troubles began when the head of their elder, four-year-old son Harendra swelled alarmingly. The hospitals in the Bhilai steel plant were not open to migrant workers, and they could not afford the private doctors in city. So they returned desperately to their village. The doctors in the Titlagarh government hospital demanded such extortionist bribes to operate on the boy that they settled for the more modest demands at the Tukla village Primary Health Centre. The illness cost the little boy his hearing, and the family five thousand rupees of their savings.

Shyamlal returned to Bhilai, but presently fell ill himself with pneumonia. There were secondary infections and sores around his mouth and on his eyelids, probably because of malnourishment. He could not close his eyes, his fever raged, and he rapidly lost weight. Lalita was alarmed that she would lose him, so she decided to submit this time to the demands of the Titlagarh government doctors. He required several injections every day. The doctor wanted a hundred rupees for each injection, and when they begged him he brought it down to sixty rupees.

Alive and indebted

The illness ravaged his health, but he ultimately survived, debilitated, with recurring pain in his back, and unable to undertake hard manual labour as in the past. The family was poorer, this time by another 12,000 rupees. Their savings gathered over half a dozen years of uninterrupted family toil in the construction sites of Bhilai evaporated completely. Lalita had a well-off relative, Ram Prasad, also a dalit, but he was fortunate to get a government job in the office of the Block Development Officer. He lent them money to pay the doctors.

Since then, the couple looked for work within the village. People employed them for tasks like paddy cutting, wood cutting, carrying soil and grazing cattle. But employment in the village is irregular, averaging eight to 10 days in a month. There are sometimes two to three months a year when they find no work at all. And wages are half of what they get in the city. There is barely enough food for the family; it was impossible to repay Ram Prasad’s loan.

How did they manage with so little? How do they survive even today in their unchanged circumstances? The word they used when they explained to me was “control”, in English. “It is with ‘control’ that we live”. When they earn, they eat better. They regard a full stomach as God’s special gift, but one that He grants sparingly. On bad days, they mix a fistful of rice in a pot of water, and let it ferment overnight. This is the food for the entire family.

As their unpaid loan to Ram Prasad mounted, with no prospect that they would ever be able to repay it, he suggested one day that they give him their younger daughter in adoption, and in return he would write off their loan. Lalita insists that he made the offer in kindness, and that he had no daughter, and therefore wanted to raise their Hema as his own child. Shyamlal was still very sickly. It was the decision of the girl’s mother to accept her relative’s proposal. The transaction was recorded on stamp paper; the parents did not know what was written but they pressed their inked thumbs to the sheet of paper, and their daughter left their home.

Little is hidden in a village, and the news spread quickly. A child’s sale is always a sensational story. The first person who came to their door was a stranger they did not recognise. He was fat and dark-skinned, and he asked them about their daughter. They learnt later that he was journalist in a local newspaper. Soon the story spread to the newspapers in the State capital, and then the national press. Within weeks, a crowd of senior politicians and officials reached their homes, and asked them why they had sold their daughter. Latika tried to explain, but they did not seem to listen. They went away very angry.

Ram Prasad was jailed for illegal trafficking for 15 days. When he returned, village elders accompanied Shyamlal to his home to demand that he return the child. He refused, saying that he loved the three-year-old girl like his own daughter, and was unwilling to let her go. But they returned with policemen in tow, and Ram Prasad reluctantly gave in.

What happened later

Years passed since I had heard about this story. I decided to search for the family to learn what had happened to them after the child was restored. I found their hutment with difficulty. It had the oppressive odour of long, unmet want and settled sadness.

I learnt that the child Hema was dead. Within less than a year of her restoration to her family, she contracted jaundice. She was too malnourished to fight the infection, and died quietly. “If they had let Ram Prasad keep the child, she would have been alive today”, her mother said wistfully. “Ram Prasad has money to feed her. We have none”.

No one visited them then, or since, except the local policemen. They came when they heard of the death. From the threshold, they saw the corpse of the dead child and the inconsolable parents. They just bowed their heads and left without a word.

--HARSHA MANDER

BLAMING IT ON THE SYSTEM

WHile communication and information systems have advanced beyond recognition, they are still no substitute for common sense and judgement in certain contexts.




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The people in charge of these corporations have allowed systems to be established which remove from staff the need to make decisions… and take responsibility.

Fifty years ago, for the first time, people were able to telephone other parts of the United Kingdom by the so-called trunk call, without going through an operator. To mark this major innovation, the Lord Provost of Edinburgh telephoned the Queen, and a somewhat stilted conversation was recorded for posterity.

For younger people, communicating instantly by mobile phone and by email, the huge change which the introduction of trunk calls brought about is scarcely credible. Yet, it undoubtedly transformed communication, and transformed it for the better.

To be more precise, what it changed for the better was the means of communication, and during the past half century there have been many more developments which have totally transformed the way in which we are able to communicate, and provide connections between different pieces of information. What has not always improved is the way in which people use these new technologies. Many organisations have allowed technology to displace judgment, to the point where communication with customers has actually got much worse than it used to be.

Service redefined

I have recently been battling against three examples of this. The first battle was with one of the UK’s major telephone service providers. I changed my arrangement with them and received a confirmatory letter which was confusing about the details. As, bizarrely for a telephone service provider, this firm does not give telephone numbers on its letters, I wrote asking for an explanation in writing. There ensued three months of frustration, ended only when I emailed the chief executive, pointing out, in exasperation, that the title “Customer Service Director” held by the person who had failed to answer my query was clearly an oxymoron.

The other two examples were with — different — major banks, in each case when charities with which I am associated needed to change signatories to cheques on long established accounts. One bank claimed that the honorary secretary’s name was not in the system. When I pointed out that the person concerned had been a signatory for several years, that I had actually seen her name on the bank’s computer when I called in to arrange the change of mandate, and that the bank had been regularly accepting cheques bearing her signature, I was met with a flat assertion that nothing could be done. The other bank informed the charity that my name was not on their system although, similarly, I have been a signatory for five years. A telephone call to the appropriate department produced, once again, an assertion that my name was not in the system — and a question, repeated twice, whether I was Mr. Kirkman. My reply, with heavy sarcasm, that I had not changed my identity since the call began produced not a glimmer of reaction. A chuckle would at least have made me think that, just possibly, the person to whom I was speaking was a sentient human being.

In all these cases, of course, the problem is human. “The system says” is a nonsensical position to take. Computers do not make mistakes; the people who use them frequently do.

Root cause

The root cause of corporate behaviour of this kind — and as soon as one mentions this kind of experience, pretty well everyone one speaks to proves to have suffered in a similar way — is that the people in charge of these corporations have allowed systems to be established which remove from staff the need to make decisions, use their common sense and intelligence, and take responsibility. It is extraordinary that the people at the top do not realise that staff should be taught to recognise that when a customer points out that the information coming up on “the system” is wrong, it is sensible to check the claim rather than assuming that “the system” cannot be wrong, but the customer must be.

The technological advances of the past half century have made it possible to handle information in ways that previously were out of the question. Some organisations — my local district council, to take one example — use this possibility well, and employ staff who deal intelligently with questions and requests for information.

It cannot be the case that the people in charge of the large corporations which make such a mess of their relations with customers are all lacking in intelligence. What is clearly the case is that too many of them have allowed themselves to become obsessed with the belief that systems are a substitute for thought and judgment rather than a means of applying them more effectively.
--BILL KIRKMAN

HEALING TOUCH

Confused and helpless: Displaced Tutsis at a refugee camp in Rwanda in 1994.
Although I was not in Mumbai on November 26, the memories of those ghastly days of watching and waiting affected me deeply. The rage I felt as I watched people stand by hoping and praying for their loved ones surprised me. For days later, my mind would churn out these painful images and fury would seep into my heart. I felt imprisoned by anger and unable to continue with my daily routine. Many people I spoke to felt the same way. Can we forget the heartbreaking scenes we have witnessed? Can those who were hostages ever forget the pain and suffering and loss they endured? What do we do with our tortured memories? The pain is raw; the heart bleeds; the mind is numb. How do we bring healing to such tortured memories? How do we transform destructive memory to life-giving memory? Painful memories need to be dealt with before we can even think about rebuilding peaceful communities. As we journey together in this column, exploring new ways of interpreting ahimsa in our 21st-century lives, let’s see if there is an ahimsa way of healing and dealing with our heartbreaking memories.

Inspiring examples

I remembered conversations I had with friends who had been victims of unspeakable brutality in Rwanda and Argentina and looked to them for inspiration. Some of them had a radiance and peace about them, despite their ordeals, that I envied. In Porto Allegre, Brazil, I was present at an interview given by the Nobel Peace winner Peres Esquivel from Argentina. He spoke of his years in prison where he and many others were regularly tortured. Although these memories were never forgotten, he was healed of that deep anger and his memories were not poisonous, but gave hope and new life to others. Almost all of them spoke about this “horrific” event in their lives which had become a turn-around point. The point at which they forced themselves to practise “active goodness” even though gut instinct told them to do otherwise. And in doing so again and again, lost the sting in their memories. Let me also share Madam Wangele’s story.

Mama Wangele is a widow, whose only son was killed in the Rwandan civil war. Filled with grief, she wanted to kill herself too, but her relatives wouldn’t let her. So she plodded on through life, angry and hard and miserable. One day, a worn-out, one-legged child soldier knocked on her door and asked for food. By the tribal marks on his face she knew that he was the enemy. She asked him very coldly, “Have you ever killed anyone?” “Yes, many,” he replied. Mama Wangele just banged the door shut on his face. She sat at her kitchen table and wept for her lost son. But something kept tugging at her heart. She followed this new stirring. She walked to the door slowly and opened it. She had no idea of what she was going to do. She saw that the boy had gone a little distance. “Mutabani,” she called. The boy turned back and saw her.

“Mutabani, come back,” she called. The boy was surprised. She asked him to come in and gave him some food and filled a tub of water for his bath. Then she brought out her son’s carefully preserved clothes and gave it to him. “These are my son’s clothes. He was killed in the war. But you can have them now, mutabani,” she said very quietly. The boy looked at her with tears…had she really called him mutabani? (Mutabani is the Luganda word for ‘son’.) As she related her story, Mama Wangele wiped her eyes. This was the beginning of healing for her, she said.

For most of us, the memories which need healing may not be of such violence. It may be a broken friendship or marriage; or of some injustice or a childhood scar or even just angry words thrown at us. However trivial it may seem to others, for us it is painful and so needs healing. Most of us hide our painful memories and hope that they will go away. But they don’t; they resurface when we least expect them and trouble us. Perhaps the first step on the journey to healing and wholeness begins when our memories are not borne in silence and hidden away, but are told, listened to with compassion and acknowledged as truth. In telling our stories, and listening to them, we learn how important it is to share, communicate and listen to each other’s sad experiences. We need to be witness to someone else’s painful memories, cry with them and feel with them and help them to recover.

Radha, a woman who was raped as a girl, found that her family hushed it up and pretended that it never happened. But it did. And she carried that memory and the anger and pain of it with her for years. It affected every relationship of hers — especially the one with her husband and her daughter. One day, at a woman’s meeting she stood up and spoke of her rape. Some of those who listened also gave voice to their own experiences. Those who listened, expressed their sadness, and comforted Radha. This sharing was the beginning of healing for her.

Willingness to share

As we reflect on an ahimsa way of dealing with life, there are two points to remember. One is of being an ahimsa person who is willing to share another’s painful burden to bring healing to him or her; the other is resolving and finding healing through being a medium of active goodness. Mama Wangele’s story shows a personal kind of goodness. Mr. Peres Esquivel, shared how for him it was the second way. Healing for him came through the act of solidarity with others, of listening to their pain, and sharing his again and again, however difficult that was and working towards a more just, humane society.

Both of them showed me the ahimsa way of dealing with all the horror life sometimes throws at us. If you have followed the ahimsa way of life which brings healing and wish to share your story
-- USHA JESUDASAN

NELLIE :INDIA'S FORGOTTEN MASSACRE


A lifetime is much too short to forget.

It was November 26, 2008, the day that was to become etched in India’s history for the audacious and traumatic terrorist commando attack on the country’s commercial capital Mumbai. I happened to be on that day at a location as distant as possible from Mumbai — psychologically, politically and socially — at Nellie in Assam, the site of one of free India’s most brutal forgotten massacres in 1983. I had been invited by the survivors to sit with them as they recalled and commemorated the events that had unfolded in this distant impoverished corner of the country 25 years earlier.

Journey into the past

We gathered in the soft sunshine of early winter in an open courtyard. A crowd quickly gathered: the older men with checked lungis and beards could easily be distinguished as people of East Bengali Muslim origin. The women and younger men dressed like anyone from an Assamese village. There were the initial courtesies of traditional welcome, as they offered us customary white Assamese scarves with exquisite red embroidery.

Senior officials of the State government who accompanied me had gently dissuaded me from the visit, questioning the wisdom of re-opening wounds of painful events of such a distant past. People have moved on long ago, they assured me. What purpose then would our visit serve? It would only revive memories that have long been buried. The same advice came from many non-official friends who worked in development organisations in the State. They added that the visit would stir issues that were too bitterly contested in the region. But the survivors persisted in their resolve that they wanted to be heard. It was impossible for me to refuse them.

Enormous suffering

On February 18, 1983, in the genocidal massacre organised in Nellie, just 40 km from Guwahati , 2,191 Muslim settlers originally from Bangladesh were slaughtered, leaving 370 children orphaned and their homes in 16 villages destroyed. As the survivors spoke one by one before our gathering a quarter century later, all of us who heard them — including officials, academics, social workers — were completely stunned, and shamed, by the enormity and immediacy of their suffering today, which retained an urgency as though they had only very recently suffered the unspeakable cruelties that they gave words to, not 25 years earlier. The bodies of many were twisted and deformed by inadequately treated injuries from the assaults by machetes and daggers; others pulled back their clothes to expose frightening scars of the attacks of a generation earlier.

Hazara Khatun, with scars of a dagger attack on her face that she survived in 1983, sat on the ground before us and pointed to her empty lap. “I was cradling my child here”, she said in a low voice. “They chopped him into two, down the middle”. Another widow Alekjaan Biwi, was far less calm. Her body was twisted, and we could all see that she had lost her psychological equilibrium. Eleven members of her family were slaughtered in the massacre, and she acted out for us how the mob had attacked them, how she had cowered and hidden herself, how she was discovered and wounded, and how she survived even though scarred and deformed for life. “I have no one in the world,” she concluded quietly.

Deluge of grief


In his early thirties, Mohammed Monoruddin began to cry inconsolably as soon as he sat before us. “My brothers, sisters were all killed, hacked into pieces,” he recalled. “I was seven years old then. I saw my parents slaughtered in front of me. I saw another woman being killed and her child snatched from her hands and thrown in fire. I wept in terror all day. The CRPF came in the evening and rescued me. Later we came to know that our house was torched. Nothing was left. All our belongings and stores of rice were gone in the fire. My elder brother, who was in Nagaon, brought me up. But I feel so lonely.”

Many others spoke of their loneliness. Noon Nahar Begum was 10 years old, and when the killings started, she tried to run away but was attacked and badly wounded. She was hospitalised for two months, and her mother and four siblings were murdered. “They were butchered here in the place where we are standing today,” she said, adding: “I have found no peace of mind for the last 25 years. I need justice for my peace. Justice is important because it was such a terrible crime. I feel lonely and miss my family…” Babool Ahmad, a tailor, was two years old when he lost his parents. He was brought up by his grandparents, whereas his sisters were raised in an SOS village.

And so the stories flowed, like a deluge of muddied waters of grief — long unaddressed and denied — gushing from a breached dam. The forgotten massacre in Nellie in 1983 established a bloody trail of open State complicity in repeated traumatic bouts of ethnic cleansing and massacres both in Assam and in India. It was followed by similar State-enabled carnages, in Delhi in 1984, Bhagalpur in 1989, Mumbai in 1993 and climaxed in Gujarat in 2002.

Series of incidents

Assam in turn has seen a series of violent ethnic clashes between various oppressed communities, each bitterly and ferociously ranged against other ethnic groups which may be as dispossessed, if not more so. The accord brokered by government with militant Bodos in 1993 assured them autonomous control over regions where their population was in a majority. The government therefore itself laid the foundations for ethnic cleansing. Bengali Muslims were driven out of their settlements by murderous attacks and the torching of their homes in 1993, and this scenario was repeated for Santhal and Munda tribals (called Adivasis) — many of whom are descendants of tea garden labour imported by the British two centuries ago — in 1996. Thousands of them continue to languish today in camps, some for 15 years, as they are still terrified to return home. Assam remains a tinder box of ethnic hatred, with recent attacks on Bihari migrant labour, Jharkhand agitators in Guwahati, bomb explosions and recent clashes between Bodos and Bengali Muslims this year, which left many dead and thousands in camps seething with hate.


The worth of lives

The government gave the survivors of Nellie compensation for each death of as little as 5,000 rupees, contrasted for instance with Rs. 7 lakhs that have been paid to survivors of the Sikh carnage of a year later in 1984. Six hundred and eighty eight criminal cases were filed in connection with Nellie organised massacre and of these 310 cases were charge-sheeted. The remaining 378 cases were closed due to the police claim of “lack of evidence”. But all the 310 charge-sheeted cases were dropped by the AGP government as a part of Assam Accord; therefore not a single person has even had to face trial for the gruesome massacre. Some lives are clearly deemed by the State of being of little worth compared to others.

The Mumbai terrorist attack of 2008 has witnessed an upsurge of understandable public anger, because a partisan and weak State leaves each of us unsafe. But States have long failed abjectly and shamefully to protect ordinary citizens and uphold justice. The lives lost in Mumbai’s Taj Hotel are precious. But the lives extinguished in distant hamlets of Nellie — and indeed the streets of Delhi, Bhagalpur, Gujarat and Malegoan — are no less valuable. A day must come when our rage and our compassion responds equally to each of these tragedies. We can be safe only by standing — and caring — together.
--HARSH MANDER

BABY IN BEIJING


It had taken 14 hours of labour, a late-night, rain-lashed car ride to the hospital and a room-full of people — husband, mother, obstetrician, mid-wife, anaesthesiologist, paediatrician —variously wielding needles, tubes, scalpels, a heav ily perspiring brow (my husband) and what looked suspiciously like a bathroom plunger (the obstetrician) — to vacuum out all three kilos of my bonny Beijing-born boy — Ishaan Raphael.

No more privacy

Suddenly my universe was transformed from one that had been filled with “Ps” — pregnancy, pain, pelvis — into one stuffed with “Bs” — baby, bottle, burp and breast. The most sweeping change had to do with this last category. Gone were the days when my breasts were my private business.

This fact was most forcefully driven home when three days post-partum, my gynaecologist, an ageing Australian with a folksy turn of phrase — (while pushing the baby out during labour he had kept urging me to assume an “Indian bum” position, which I realised referred to our propensity to squat on toilets, but am not sure he realised was a somewhat inappropriate instruction given whom he was talking to) — strode into my hospital room and, without so much as an if-you-please, reached into my loosely tied gown, grabbed a breast and gently squeezed.

“Oh! Nice and firm,” he said approvingly. “Milk coming along well.” A final squeeze and he was gone. Life had changed indeed. Just how much was something none of the baby books I had dutifully read or childbirth preparation classes I had taken quite prepared me for. From being a foreign correspondent and author I had morphed into a round-the-clock supplier of diapers and milk. Space ships were taking off, banks were collapsing and Sarah Palin was parading around in $150,000 worth of designer clothes but I remained at best peripherally aware of these momentous goings on.

The first two weeks were overwhelming. It was only in week three, however, the adventure began in earnest when Ishaan Raphael developed colic, leading to long bouts of inconsolable crying through what seemed like interminable nights. Helping us out during this challenging time was Auntie Mei, a Chinese nanny with attitude. Within days she was in complete charge, with my husband and I bowing to her imperious commands in terrified obedience.

The Chinese way

I was put on a diet of small black chicken soup — a perennial Chinese remedy for just about everything — to boost my milk supply. My husband was sternly stopped from swaddling the baby too tightly. We were roundly admonished if we even suggested taking the tot out for a stroll — in China there is a 100-day taboo on taking infants outdoors. And Ishaan himself spent large portions of the day sheltering in her ample bosom.

Auntie Mei displayed the kind of brutal honesty that I had often observed in China over the years. On my very first day in the country I remember having faced a classroom of students at the Beijing Broadcasting Institute where I had been hired to teach English. When I had asked the students to introduce themselves, a rather portly youth had stood up and announced, “My name is Fat, because I am fat.” I’d been rather bemused when his classmates merely nodded slowly in agreement at what they obviously considered to be no more that a straightforward statement of fact.

Six years on and we found ourselves at the receiving end of several similar truthful punches whenever in the company of Auntie Mei. My spouse once asked her to watch a video that taught frazzled parents how to calm colicky children, along with him.

Mei, who tended to treat any advice of non-Chinese origin with much scepticism, sniffed suspiciously when told the video featured a renowned child specialist from the United States but nonetheless sat down to watch. My spouse found that after a few minutes she moved away from her seat next to him to the far end of the room. Assuming she had made the move out of deference to their difference in status, he hastened to assure her. “Please don’t feel awkward,” he said. “You are very welcome to sit next to me.

“Oh, I know,” came the reply. “It’s just that your feet smell.”

Dealing with colic

The term “colic” we discovered is really a description of a certain kind of behaviour — more than three hours of crying for more than three days a week for more than three weeks in a row in an otherwise healthy baby — rather than a physical ailment. Doctors variously advised us to burp the baby regularly, swaddle him tightly and massage his tummy but invariably ended with the sobering conclusion that it was most likely we would just have to wait it out- most children mysteriously stopped crying by the end of three months.

Auntie Mei was totally baffled when we tried explaining “colic” to her as it had been explained to us. “In China there is no such thing,” was her response. In China, we were to discover, much was different. For example there was no difference between the word for “burp” and “hiccup”. Both were simply called “da ge.” We tried asking Auntie Mei how the Chinese could tell the two apart in the absence of different words to describe them. “But they’re the same thing,” she replied firmly. “Hiccups are just more intense than a burp.” It was all a bit confusing since this statement went something like “Da ge are just more intense than da ge.”

The dark tunnel of colic was lit with many moments of humour. At one point my husband and I found ourselves at three in the morning, he jiggling the baby like a jelly fish in a baby carrier while I followed him manically waving a rattle.

But the funny side was often difficult to see. For weeks nothing seemed to help soothe Ishaan during a colic-episode. Then one day, frustrated with all my attempts to calm the baby having come to naught I decided to blast some music over his screams to drown out his crying and lift my mood. I happened to play an old Bob Marley CD.

“Wai yai yai; wai yai yai yai,” the refrain for “Buffalo Soldier” sounded too much like a baby crying for comfort, when suddenly I noticed something. The baby was not crying. He was smiling. In that minute I wept. My baby was finally happy thanks to Bob Marley. He might be colicky but at least he had great taste in music.

Musical solution

I filled the house with music. We danced to dire straits, swayed to Bach and stamped through flamenco. Even Auntie Mei, at first sceptical at this thoroughly non-Chinese solution to the problem, came around and one day I caught her doing the twist, baby clasped to the hip, Chubby Checker belting out a number in the background.

And so here I am — falling in love with my baby a little more every day as we dance our way through colic. He is my wonderful audience of one. I sing to him while we pirouette and all my bathroom singer fantasies are realised. He would take my voice over Pavarotti’s. It’s a giddy complement.
- --PALLAVI AIYAR


It’s still a bit of a shock to have so completely lost my former life, but then I remind myself that my writings may have a far larger audience but none so devoted as my little one. Gradually I find myself in a place of stillness and peace of mind. That is of course until the next time baby goes “Waaaaah.” But even for a fleeting while, its good place to be