Developing Holistic health care in the third world:

A working study proposal

- - Rakesh Biswas MD 1*,Nupur Sarkar MD 2, Arvind M Theodore MSc 3,Bisshow Kalyan Parajuli Phd 4, Vijay Alurkar, MD DM 5,Kiduwur J Shetty MD FRCP 6, J S Nagra MD 7

1Asstt Prof, Medicine; 2 Lecturer, Paediatrics; 3 Lecturer, Community Medicine; 5 Professor, Medicine; 6 Professor, Medicine; 7 Professor, Community Medicine, Manipal teaching hospital, Pokhara

4 Lecturer, Dept of Anthropology, Tribhuvan University, P.N. Campus, Pokhara, Nepal

*Address correspondence to: Dr Rakesh Biswas MD, Asstt Prof, Dept of Medicine, Manipal Teaching Hospital, Pokhara, 33701, Nepal

E-mail: rakesh7biswas@yahoo.com
Eubios Journal of Asian and International Bioethics 12 (2002), 143-147.
Introduction

We made this study proposal to answer a few questions, which our patients roused in us. We are in a tertiary care center catering to a large population in a hilly area in mid western Nepal and we have a fair amount of in and outpatients. Our time is mostly spent in catering to them in ward rounds and outpatient consultations apart from student teaching, which includes bedside clinics, problem based learning and lecture classes.

In the midst of all these if one tries to remember one's patients at the end of the day one can only recollect a confused garble of investigation reports, a few interesting clinical findings and bits of history thrown in. Rarely ever is one able to get a complete picture of the patient as a person and not just a few technical aspects of his/her disease. We needed to know more about our patients, the havoc their diseases wreaked in their life patterns, and also the kind of life they led before the disease entered their lives. We thought that the best way to do that would be to follow them up in their homes in the natural settings of their community and not only to establish a continued therapeutic support but also gather valuable data on their life patterns in relation to their illnesses. One way to record this data would be to use ethnographic tools, which have long been used in medical anthropology.

Anthropology is the study of humans and medicine is simply human trouble-shooting. Medical anthropology is an attempt to study humans in a holistic manner so that the patient is not just seen as a disease comprising a mass of signs and symptoms but also recognized as a person with a story of his own. Such an approach not only fosters a better doctor patient relationship but also more often than not brings out a lot of hidden clues to the diagnosis.

What are the components of Medical Anthropology studied usually?

1. Understanding the importance of "culture" in governing the type and frequency of disease in a population.

2. Recognizing the evolutionary and historical basis of current health issues.

3. Identifying the unique health beliefs and practices of ethnic communities.

How do we go about studying this in our community?

Stories have always been a recording tool of history, anthropology and ethnography, as they describe and explain what other people do. Their thick descriptions of what happened are told with as much detail as is relevant, and as many interpretations as the observations can sustain. Personal stories have often been used as an exploratory tool to bring out beliefs and values.

Understanding the narrative context of illness provides a framework for approaching a patient's problems holistically, as well as revealing diagnostic and therapeutic options. Furthermore, narratives of illness provide a medium for the education of both patients and health professionals and may also expand and enrich the research agenda (box). (1) Indeed, it is thought that anecdotes, or "illness scripts," may be the underlying form in which we accumulate our medical knowledge.

The processes of getting ill, being ill, getting better (or getting worse), and coping (or failing to cope) with illness, can all be thought of as enacted narratives within the wider narratives (stories) of people's lives

Narratives of illness provide a framework for approaching a patient's problems holistically, and may uncover diagnostic and therapeutic options

Taking a history is an interpretive act; interpretation (the discernment of meaning) is central to the analysis of narratives (for example, in literary criticism)

Narratives offer a method for addressing existential qualities such as inner hurt, despair, hope, grief, and moral pain which frequently accompany, and may even constitute, people's illnesses

The lost tradition of narrative should be revived in the teaching and practice of medicine

Need for a multidisciplinary approach: A physician is by virtue/side effect of his training adept in recognizing a person's problem in terms of his disease but sadly ill prepared to handle the patient as a person with a story of his/her own. We did make a small attempt of our own using medical students in their early years uncorrupted by the knowledge bias with encouraging results (1). However, a team of people from other disciplines, who can record a person's life events better integrating ethnography, can facilitate this. This can be given a narrative thread from people of literature and the physician can interweave the disease events in the end.

An illustration: This story is not representative of a particular framework or what we want because each and every patients story is different and in the end when we have collected a reasonable database of patient stories in and around Pokhara we ourselves were surprised by what we got. In fact it is the element of surprise and discovery, which gives the most satisfying conclusion of any study. The names and dates have been changed to protect the patient's identity. We welcome comments.

Case 1:

Physician's notes on the disease

7/10/01 - Jau Maya Pun came to me in my duty day on the 6th midnight .I saw her in the day time (Ward notes-- 44f -CGN-CRF 1998-investiqated for anorexia, vomiting and found to have CRF, renal transplant on 11/4/01 done in Kaliappa, Chennai, donor uncle, cross match 5%.-on t. Cyclosporin -100mg bd,t.Azoran-1-1/2 h.s, prednisolone 17.5mg bd,septran od....presently come with fever 1 day,azotemia-creat-2.7mg.Diarrhoea-Found stools spilt over her clothes while examining for backache. Also had oliguria. Started mx, CVP...urine spot Na+...28...

17/11/01-Today oliguria persistent, yesterday's Input-4lts/O-120ml,Developed hypotension today-80mm-started on iv Dopamine.

Nov 18th- We treated her for pre-renal causes but her urine output came only up to 300ml(on 17th) from 100ml(16th). We repeated an ultrasound for obstructive uropathy and found that there indeed was a hydronephrosis-pelvicalyceal diln and a 1000cc(cyst ? Urinoma) which was possibly compressing the ureter. Do we need to continue Cyclosporine in a renal dose modif inspite of the ARF (due to ? Ac pyelonephritis in graft kidney..another of the growing possibilities on the background of diabetes ? steroid induced).

The above is a physician's note on a disease, a patient who had required a renal transplant for an incurable kidney disorder.

Physician's reflections on the same patient:

Today after the walk I chatted with her in the ICU. She has improved a lot considering the amount of verbal exchange and enthusiasm she exuded. Her output was looking better in volume than yesterday. She had been born West of Beni probably in one of the villages in Peter Matthiessen's (The snow Leopard) route to Shey Phoksumdo. Her husband took charge of her when she was 15 and she went to Hong Kong with him as he was serving in the British Gurkhas. They were rich once they returned to Pokhara and they bought a nice house in its suburbs. The house served as an accommodation for the present Intern in the ICU, looking after her (when he was a student in the 2nd year) and he remembered her to be a very cheerful and helpful lady always inviting them to taste the goodies she'd prepare during festivals. No wonder the whole neighbor-hood had risen to the occasion of donating kidneys for her. She was said to have been given a kidney by her uncle but that was in reality just her neighbor. That heightened my suspicions of chronic graft rejection. She had earlier been having anorexia and giddiness due to CRF, which was diagnosed at a point when the kidney was unsalvageable by other means except replacement. She took some erythropoetin in Katmandu which hardly made any difference and she was bundled off to Vellore where they started planning for her transplant after which she called her whole neighbourhood down there. Now, it was only after one week of starting hemodialysis that she felt like eating something for the first time in months. After the transplant (which cost her 16,000 Indian rupees only for the operation) she almost returned back to her normal self except for the medicines she had to gulp everyday( costing around 5000 Rs. per month). Nov 19th-Mailed Vijay Kumar in Chennai, Kalliappa,

Dear Dr.Rakesh,

The features generally suggest septicemia and hence I would suggest giving a broad spectrum antibiotic like ceftazidime or ceftrioxone. The dilatation of the urinary system need not be tackled on an emergency basis. Once the patient stabilises, she can be shifted to Madras.

If the creatinine increases, she may need dialysis in which case patient can be referred to Dr.Kafle (Katmandu).

Please keep in touch, Dr.R.Vijayakumar

.... Meanwhile we found the serum creatinine had climbed up to 5.6 despite her improved urine output and the possibility was her renal failure was worsening and she would soon require a dialysis and so we started making arrangements to send her to Katmandu. Her husband said it would be difficult for him to arrange everything in the afternoon and we thought we would wait till this morning (we did put her on Gentamycin in renal modified doses after the urine c/s showed E. coli sensitive only to genta) but she worsened at night and succumbed to her renal failure on the 20th morning. The relatives and her neighbors who had rallied for her all these days, who had gone all the way to Madras to see if their kidneys matched, embraced me and cried.

Study Design - Aims and objectives

Illness is deeply embedded in the social world, and consequently it is inseparable from the structures and processes that constitute that world. For the practitioner, as for the anthropologist, an enquiry into the meanings of illness is a journey into relationships (2). It shall be our aim to document that journey.

Method Proposal for the Future Study

Data collection: A list of Patient's names and addresses will be collected from a variety of patients attending the inpatient and OPDs of Manipal Teaching hospital, Pokhara, Nepal.

The emphasis will be on home visits by the physician/anthropology team to interview the patient for a complete story, which shall comprise not only just the disease but the whole life story of the patient. Following is an illustration by two of our medical students who have independently collected data of a person's life events while recording the disease history. We have not attempted to edit it. All of us have an individual approach to people and it would be alright if this present study and enquiry into the nature of human beings and the structure of suffering is kept flexible. Again the first part is a case description and the technical terms used may easily be skipped.

Case 2

A 40 year old man was admitted to our hospital with the history of burning sensation in the stomach, shortness of breath, and swelling of the entire body for 17 months. His symptoms started 17 months back when he was working as a security guard in India. Breathlessness was of progressive kind, initially only on exertion but later on even at rest., which woke him all the night. Swelling then followed, initially his limbs and later his entire body to swell to such an extent that he was completely confined to bed making him a stationery creature. For these complaints he was taken to Agra hospital where he stayed there for two months. His symptoms subsided except for mild breathlessness. The poor fellow also contracted malaria during his stay at hospital for which he was given chloroquine. He remained OK for almost one month after which his old symptoms again stared to its awful countenance. He made many futile attempts to get relieve, even tried homeopathy but all the same. Lastly for good or bad he came to this hospital thinking that even he has to breath his last that would be in his own country. He never smokes nor consumes alcohol as regards the personal history but he was economically very deprived.

On examination his body was in a propped up position, the whole body being edematous. The pulse rate was 70bpm,regular but of collapsing nature. Blood pressure was 118/90 left arm supine but Hill's sign (difference more than 60) was positive. The jugular venous pressure was raised 5 cm from the sternal angle. There were widespread pulsations both in his praecordium and epigastrium. The ill sustained apex away from MC line in 6th IC space along with parasternal heave was felt on palpation. On ascultation an early diastolic murmur; high pitched, blowing, decrescendo was heard best in the IC space in left sternal border. An ejection systolic murmur was found in the aortic area. Other signs include pistol shot femur, dancing brachii carotid pulsations. Palpation of the abdomen reveled tender hepatomegaly.

Out of some of the investigations the CXR showed a large heart and ECHO showed an incompetent aortic valve.

He was given the diagnosis: severe AR with CCF.

Life events of the patient:

He was born in a small village of Myagdi in a very poor family. Being economically deprived from the beginning, his family has to eke out in scanty existence thereby creating an intense desire in his mind to make money.

He studied up to 5 class but could not pursue his studies as he has to support his parents to alleviate the burden of his family. He spent almost all his adolescence in inner turmoil of ignorance, needs and expectations. To wake up in the morning, toil almost his entire day in farm and eat whatever was available in home was his life. To put it in other way he was no more than a creature struggling to become compatible in Darwinian zeitgeist. He was married at 21,had three children making him more difficult to bear the brunt of the family.

He was perfectly healthy during his youth besides some body ache due to over exertion. There was no history suggestive of rheumatic fever that could explain his present condition. Or it may be that the symptoms (probably minor) might have failed to attract his and his parent's attraction in front of the great responsibilities.

Taking a high hope to sustain his family he decided to go abroad as most of our countrymen do. He went to India started working as a security guard. The salary was minimum about Rs 1800 IC and he couldn't save any money .So he left the job after 2 years and started working with sadhus where he had no problem of food but couldn't make money.

Here during this he started getting the mild initially burning of stomach. He left his job and worked as night guard in Calcutta. His disease became so severe that he couldn't sleep and move his body. He was left carelessly in that alien land. Then some people who could think of humanity took him to Agra hospital, and ultimately he landed here as explained earlier.

What is the cause of his present condition? Rheumatic fever? Might be because of his scanty existence, overcrowded surroundings and poor access to health. If it would have been found out earlier he wouldn't have to face this terrible consequences. Now there are two possibilities either to wait for a time until a severe chest infection comes and take his life away or to replace the incompetent valve which was beyond his reach.

Medicine might take greatest pride in itself in taking a giant step from cloning to designer babies but it must take into account that there are still a large fraction like this who because of poor access to health are forced to an untimely and undeserved death. As Fredrick Taylor stated "The high and ideal aim of medicine is to usher entire humanity into a world by banishing sickness from human life and bringing about universal health.".............still a long way to reach!!!

- Binod Dhakal ( 7th Semester MBBS).

Case 3

A 68yr old male from Chitwan, Bharatpur who is married and a farmer by occupation got admitted in MTH on 17th August _?~01 with the complaints of breathlessness for 5 months.

History of presenting complaints:

He seemed to be apparently well 5 months back when he had breathlessness that was sudden in onset and was precipitated by an emotional stress. He could not speak any sentences, was gasping for air. He became drowsy, nauseated and vomited and was in a confused state and was sweating. (no chest pain?) He was rushed to the college of medical sciences teaching hospital at Chitwan . He was given oxygen and IV drips. His condition improved and was discharged after 3days with the prescription of unicontoin 400mg tablets for 2months.

The severity of breathlessness decreased, but it was still there. It affected his daily work. He had to rest frequently during his daily work. Occasionally it was present during rest; he also experienced difficulty in completing a full sentence at one breath. The breathlessness increased in severity even when going to the toilet or walking a few steps. It was present when sleeping flat, therefore he had to raise the head-end of the bed and also found it more comfortable while sleeping on the right side. He also has had frequent episodes of getting up at night and gasping for air. (Air hunger). The breathlessness is associated with cough, swelling of hands and legs (more) and there is no history of chest pain. Cough followed the attack of breathlessness 5 months ago. It increased in severity when breathlessness comes about. Cough free intervals are also present and associated with white, frothy sputum, moderate amount. Hot drinks relieve cough ------? Swelling of limbs followed the attack of breathlessness. The swelling was first noticed on his both legs. He noticed it when his slippers became tight.

Past history: no history of hospital admission, no Chronic diseases, no hypertension, no tuberculosis history. Was diagnosed as a diabetic at Bharatpur 15 days prior to his coming here.

Treatment history: for this illness he was first treated at Bharatpur, then with a homeopathic doctor in Delhi and now he has come here. He is on salbutamol inhaler, verapamil tab., digoxin tab, frusemide A pleural tap was done and about 3 test tubes of pleural fluid (yellow in color) were aspirated. He was relieved of his breathlessness after the pleural tap. Now he says his condition has very much improved.

Family history: no history of any chronic disease in the family, no member has had this type of disease also

Social history: has a house in Chitwan, a shop farm land. His family is well supported.

Bowel & bladder habits: normal

Life events of the patient:

He was born at Armala VDC, Kaski District. (1990 BS). He spent his childhood there. He did not attend any school, he received an informal education, learning to read and write the Nepali script. His parents were farmers; he has 3 brothers and 3 sisters and two sisters in laws.

At he age of 14, penniless, he ran away from home along with his neighborhood friend to Gorakhpur in India to get enrolled into the Indian army. Around this age he started smoking. Used to smoke a pack of cigarette per day. He also liked consuming meat and good food. Never got into drinking alcohol. He was denied enrollment into the Indian army due to his thin built and then he went to Assam, Guwahati. Where he worked for a wealthy businessman as a cook earning about Rs-27 per month for 6yrs. During this time he didn't send any message back home. His brothers, though, had not given up searching for him, and finally his elder brother came to Guwahati and found him there and he was sent to his home.

Back home, he stayed for around 1yr. He was married to a girl of a very short stature of the same village and from a well to do family. She was 17yrs of age. He helped his parents and brother with tilling the land. Then after 1yr he decided to go to Madras where his cousin brother was working as watchman. He sold his coat to his friend for a mere rs80 and this amount of money took him to Madras. He started working as a watch in one of the companies there with a salary of Rs50.

Back home, his wife had given birth to daughter, then followed by a son after two years. He used to come home once a year during Dashain. He also sent some money back home. At home his family was now doing well financially, so his parents bought more land and built a big puke house and kept cows and buffaloes. His brothers were also sending him money.

His dad died 2yrs after his stay in Madras. He was of 82yrs. His mother passed away in 1996. He worked his way up as chief guard, head guard, and foreman. With a twin sharing room at the start, he ended with a company sponsored two bedroom flat with a kitchen and a bathroom. His Daughter did not receive any education and was married off at 17yrs old age to well supported family.

His son passed the S.L.C(school leaving certificate) exams and went to word in Dabur India Limited, Bombay. At the age of 22yrs, he was married. They produced two sons.

Finally after 30yrs. of service he sought retirement. He took retirement with a monthly salary of RS 4,800. Compared to RS 50 per month when he had just joined. Though he was away from his wife for long intervals, he did not indulge in any sexual affairs. While, about to return home from Madras grief struck him on the face, his son had succumbed to head injuries in a fatal motorcycle accident in Bombay. He performed his son's rites in Bombay and returned home with eyes full of sorrow.

Then with the money he had saved he bought land in Chitwan and built a house and set up a small tea and biscuit shop. He then moved with his wife, daughter-in law, and two grand children to Chitwan . He sent his grand children to school, asked his daughter-in law to run the shop, whilst himself took to helping with the household stuffs.

Since the time of their son's death, his wife began to behave in a strange fashion. She started becoming very pessimistic, and started abusing her husband. She never seemed content but used to complain about everything around her. His relationship with her gradually deteriorated to such an extent that he spoke to her only when necessary otherwise not. Then on that day, his wife was complaining to him about her plight and their financial status, her not being happy with the daughter-in law and the two grandchildren. Hearing this the attack had occurred.

- Gaurav Dhakal 7th semester MBBS

Analysing Data

The emphasis will remain on grouping the individual case records with their stories into a disease data-base recognizing at the same time, no two persons/patients will have the same disease-life pattern inspite of sharing the same diagnosis. The Tao of Physics provides interesting confirmation of long held beliefs about the representation of reality... randomised controlled trials or our thesis facts and figures are a poor substitute as an abstract representation of the actually infinite number of variables a single patient or human or for that matter an atom churns out...this we believe can only be depicted using a holistic approach ...through narrative. Critics may counter and a narrative is highly individual observer dependant but then so are all observations and data.

The scientific method of abstraction is very efficient and powerful but we have to pay a price for it. As we define our system of concepts more precisely, as we streamline it and make the connections more and more rigorous, it becomes increasingly detached from the real world. Ordinary language is a map, which due to its intrinsic inaccuracy, has a certain flexibility so that it can follow the curved shape of the territory to some degree. As we make it more rigorous, the flexibility gradually disappears, and with the language of mathematics we have reached a point where the links with reality are so tenuous that the relation of the symbols to our sensory experience is no longer evident. This is why we have to supplement our mathematical models and theories with verbal interpretations, again using concepts, which can be understood intuitively but which may be slightly ambiguous.(3)

Conclusion

This is a preliminary protocol for study and there are purposefully a lot of loose ends for we never know what a process of enquiry ultimately unearths. That is the joy of discovery. We welcome your comments.

References

1) Greenhalgh T, Hurwitz B, Why study narrative? BMJ 1999; 318:48-50.

2) Biswas R, Using patient narrative for medical education, http://www.bmj.com/cgi/eletters/318/7177/186

3) Kleinman A. The illness narratives. New York: Basic Books, 1988

  1. Capra F. Tao of Physics, UK, Fontana,1976.

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