To help endure the last days

By Najma Sadeque

 

The cancer ward is in the remotest section of the Jinnah hospital, says Dr. Saira, “Not that it was willfully chosen to be that way, but it was therefore the least noticed by visitors. Only if a patient had a relative or friend who was deeply concerned, did anyone, apart from the medical personnel, go that way. So it compounded the air of isolation and deep loneliness.”

When patients families were poor, they could not go too often; when they couldn’t cope for whatever going, they’d stop going altogether. “For example, there was a patient who had nine children and whose wife had TB: they couldn’t even fend for themselves. Or in troubled times, there would be curfews, and people couldn’t visit even if they wanted to. Then there would be terminal patients going through the painful process of dying slowly over periods of many months.”

In the early 80’s the OPD (Out-Patient Department) rush increased, but patients here, because of social attitudes, always tend to come when the ailment has progressed very far or when it is too late. “First they go to the mohalla quack, then to another, and then as a last resort to some mazaar where a quack pir, instead of having the mercy to advise going to the doctor, will relieve them of their hard earned money and send them away with a taawiz around their foreheads!” she says in exasperation, “Faith healing is all very well for some psychologically induced ailments, but a true God-fearing pir would know where to draw the line and use his wisdom to direct the patient to a proper doctor in time”

She relates a hair-raising example.

“There was this wife of a domestic servant who developed a lump. His employers wanted to take her to the hospital, but he wouldn’t allow it. Instead he took her back to their village in Kashmir to have his Pir treat her by “dum”. She eventually ended up with five lumps it was cancer and she died a horrible death, quite unnecessarily, because of the ignorance and stubbornness of her husband.

In the 80’s with increased focus on cancer worldwide, there was a spate of invitations to Pakistani doctors to attend seminars, workshops and conferences propagating early detection and prevention.

“While as many people as got the opportunity attended these meetings, very little practically was done about it. The government hospitals should have been the first to start with early detection programmes but didn’t.

There were NGOs which were interested, but in principle were not allowed to get officially involved. “It was heartbreaking to watch sights like an older woman carrying a younger one who was too ill to walk, such as a mother carrying a daughter. Diagnosis and medicines alone aren’t enough concern has to extend beyond to the family whose survival and livelihood are also sadly affected.”

The sort of care and understanding needed that one didn’t get from OPDs or ward came from volunteer service of young doctors who still retained their idealism. Volunteers worked in the hospitals as they still do often providing food for the patients so that poor relatives who could themselves ill afford to eat were not doubly burdened apart from having to spend on transport fare and having to take time off from work or leave small children in the grudging care of others so as to run such errands. They also concern themselves with families of patients, keeping in touch with them when breadwinners die, helping out in the interim while trying to find alternatives for them.

“After many efforts and indifference or resistance whatever it was for those doctors concerned and for reason best known to themselves one lost hope in the government.” In 1982, Dr. Saira Khan organized the Medical Aid Foundation and in 1989, it was registered under the Social Welfare Department. In the same year, it was decided to open an early detection unit. With limited funds, it was only possible to start with two tiny room. “But what is important is that it serves the purpose and is located in one of the countless places where it is needed in Neelam Colony. Mr.Yaqub Tabani was the Chief Guest at its opening.”

In early 1990, less than a year later, a second unit a model center complete with X-Ray, Ultra Sound and laboratory, was established at No. 6 Mahmoodabad, where all services are made available at cost. “It’s very densely populated there’s a population of between 5 and 6 lacs in its 6-mile radius and quackery abounds. There must be at least a dozen quacks on Mahmoodabad Road alone.”

In the last two years since its opening, the model centre has carried out 1400 pap smear tests free of charge. A motivator accompanies Dr. Saira as they go into the localities, literally herding the women in, teaching them how to check themselves for their own good, encouraging them to bring their children in to be checked or treated at the first sign of something not being quite right, drumming in the need to space children, warning against self medication especially with antibiotics, and so on.

“A malaria blood test known as MP costs only 5 rupees, yet people won’t bother to get it done, while on the other hand they will down any amount of other expensive medicines, many of them a waste of money.”

There are four divisions to the Medical Aid Foundation, the first being a comprehensive package of primary healthy care and family planning advice combined with full diagnostic facilities including early cancer detection services on a non-profit basis, and with good reason: too many pregnancies make women highly vulnerable to uterine cancer. The others are social welfare, which includes rehabilitative and palliative care and looking to the patients’ families as well; mobile services’ and the care and rehabilitation of cancer patients.

A recent example of the far reaching social services was medical Aid Foundation’s presence in many flood-stricken areas of Sindh. Not only were donations in food and other kind distributed to isolated villagers, comprehensive inoculation and medical attention was provided. Significantly, wherever MAF went, there were no epidemics of malaria, typhoid and cholera at least.

Initially, the idea of an hospice had not arisen. The object first was to provide the extensive nursing care not possible at home. The cost of chemotherapy by itself was colossal enough, and hospitalization was necessary for chemotherapy. Patients who came from upcountry and elsewhere who were referred here had nowhere else to stay and could scarcely afford other accommodation. Given the degree of suffering of the cancer patient and the nature and extent of attention required, it was seldom possible to take care of such patients at home especially when there were other members of the family, especially children, to be looked after as well.

But the need for a hospice quickly became evident. The concept has been put to practice for decades now in many countries. It was finally realized that when there was no cure and the patient was in abject pain, there was no justification in going through the motions of administering drugs in pretense of treatment that was known would not work. It was far more important and desirable that patients be enabled to live out their remaining days with dignity and comfort whether it was weeks or months and find some joy in the company of loved ones conditioned to accept the inevitable, allowed to eat and drink whatever they wanted and pursue activities that they found physically practical without being forced into a strict regimen, the focus being on keeping them pain-free to the maximum that any means allowed.

Similarly the need for a hospice here too became quickly evident. There were those patients who were not going to recover. Families would have long since realized that home care was not possible nor able to alleviate suffering the way a fully-equipped nursing home could. Some patients were simply abandoned because the family could no longer cope. It was not a matter of callousness: it was simply a matter of people of little means who had few choices having to make the painful choice between the dying and the dependant living.

“Tremendous support came from the Parsi community,” says Dr. Saira. “Without them, so much would not have been possible so soon. They helped us to surge ahead and they gave wholeheartedly of their charity without any strings attached whatsoever.” She fondly remembers Dr. Nancy Cowasjee, the first chairperson of the committee and the late wife of Mr. Ardeshir Cowasjee. “There were others who had less sympathy for facilities for the dying. But she pushed it through. Then there was Meher Minwalla who provided the Hotel Metropole venue free for a fund-raiser it raised 5 lacs.”

All fund-raised lie imprinted on her mind because of the warm support, and the sacrifices of time and effort that never looked for personal reward. “There was this function on M.M.S. Nazim belonging to the Maritime Agency. Rubina Noorani was the patron and chairperson of the fund-raising committee. Commodore Yunus got the ship painted and lit up for the occasion. It got us 6 and a half lacs.

And so on September 1, 1991, Rahat Kada to be. Once the initial funds were raised, finding a place was even harder. Not every one wanted to rent out their premises for a cancer hospital. But an understanding landlord emerged eventually. Rahat Kada filled up quickly and always tends to be full. “There is not only a need for more than the 25 beds, which is Rahat Kada’s present capacity, there is a need for any more Rahat Kadas all over the country.”

The degree of neglect of terminal patients could be gauged from the fact that when one patient was transferred from JinnahHospital, when he was lifted from his bed, sheet and all, there were hundreds of cockroaches mulling around under the bed sheet.

All cases that turn up at Rahat Kada are tragic, but some are more than others. There was, for example, a pretty 22-year old who had been suffering frequently from pain in one leg for the past several years. On the very day she got married, the pain became so unbearable, instead of being able to take her to her new home, the groom had to rush her to the hospital. That, as it turned out, became her new and last home. A biopsy revealed that she was suffering from ewing sarcoma, a bone condition. Nine months later she died.

There was also this young ma, married with a three year old daughter who developed such a painful condition in one leg that he simply could not put pressure on it, and would have to stand on the other leg alone whenever he did. When the pain was unbearable he would stay at Rahat Kada, and go home when he felt somewhat better. But after a year he died.

But a very typical case was that of a young mother of two children from Bangladesh most husbands completely abandoned wives who developed cancer, especially those with breast or cervical cancer. She had almost recovered, or rather, enjoyed a long remission, but he turned his back on her and the children anyway, permanently. She died eventually.

But the most cruel kind of case is when a problem is detected and relief is denied to the patient. A 13 year old girl was brought because of a large tumor on her back. An immediate operation was recommended but the mother simply would not allow it on the grounds that it would reduce the chances of marriage, foolishly overlooking the fact that in the condition that she was already, the child had no chance of getting a marriage proposal at all and without treatment, it would only grow worse. It ultimately became so bad that her back bifurcated and doing the dressings were unspeakable agony. The tumor and the pain grew relentlessly for the next two years, but the mother remained undeterred. She died with great and unnecessary suffering, only 15 years old.

Then there are those whose idealism lead them to inflict themselves with loneliness. One migrant had come over to Pakistan in 1948, leaving his entire family behind who refused to share his faith. He had only one very distant relative here he occasionally visited his family in India, but his unenviable economic circumstances gave them no reason to join him here. He contracted lung cancer and died after two months in Rahat Kada. But he was able to leave a letter for his family.

“There are many such loners,” says Dr. Saira, “Old people especially. Sometimes they do have relatives, but everyone has to continue with their own jobs to support families and themselves to be able to give more than a little time. Like this gentleman who died of cancer of the colon. His niece and nephew were also doctors, but they could do only so much. For people such as these, Rahat Kada is home. They are cared for around the clock, and those who take care, genuinely feel for them. There is complete administrational, nursing and janitorial staff. Some patrons see to the family’s problems. Others send specially cooked food every day. Diet is according to requirement as well as request, Bed linen changed daily or as often as needed, and so on. Patients are referred to us from hospitals all over. Several senior consultants give us free services. There’s Dr. Zulfiqar Hossain, oncologist. Dr. Shaida Zaidi makes ultrasound available free. One must remember there are few cancer specialists. Many more are needed. And the kind of care needed for cancer patients is in short supply. All are not terminal, but they need periods of hospitalization. Which makes Rahat Kada all the more important.”

What with the bounties of life being inequitably divided among people and such division institutionalized in the bargain, those of modest means and those absolutely impoverished, will for a long time in the foreseeable future, have to depend on the humanitarianism and charity of the better off.

If there are some who abandon cancer patients, there is also the other extreme of those refusing hospitalization to patients who want and need it, simply because the healthy feel an unwarranted guilt over their failure to help cure, or they are afraid to “lose face”. Unfortunately also, the conscious cultivation of empathy and the giving spirit among growing children seems to be on the decline.

But setting examples are bound to inspire. Such as that of Mrs. Oofi Khan, Chairperson of the Managing Committee of Rahat Kada without whose commitment so much would not have been possible so quickly. The same with the members of the various committees handling MAF’s many projects.

“During my childhood, nuns would take the pupils to hospitals and other places for exposure to the sufferings of the poor. The government hospitals would invariable be overcrowded and the conditions quite bad. Yet the poor would have to go there because they could not afford private doctors. We would be given fruit baskets to gift to poor patients. I tell you, it makes a world of difference when you give with your own hands: you can’t imagine the feeling the joy of giving, and you count your blessings you feel privileged that you are able to give. These are the forgotten values that have to be inculcated again.”

Once sensitized to others’ suffering, her mind opened up on the many other aspects the loss of breadwinner, the minors and dependants left to fend for themselves, the immediate problems of daily survival especially with something as basic as food. And so the focus on cancer grew, from frequent observations to hearing narrations of the problems and sufferings, including some horror stories, of someone’s relative or acquaintance, about little efforts to help out whether by extending Zakat or in the form of medicines and other essentials too expensive for the patient.

A bigger Rahat Kada with at least a hundred beds, and the other projects of the Medical Aid Foundation such as several early detection centers and other facilities which go far beyond cancer, will continue to depend on the generosity of the public. And everyone needs to be. Cancer and hard times can hit anyone, any time.

Everyone is able to help in some way or the other, even if not personally. The consolidation of efforts and contribution, big or small, direct or indirect, sums up to something considerable, so that much can be resolved. But people first have to stop and think just long enough to admit to it. That seems to be the biggest hurdle of all.

Printed in The News – Friday, February 26, 1993

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About denebsumbul

Documentarian, Activist, Journalist, Photographer, Capacity Trainer
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