Sunday morning. I was rounding leisurely with my residents. We moved as a group to the patient’s bedside in our ICU and saw several patients: a middle-aged woman with acute myocardial infarction, a boy heavily parasitized with plasmodium falciparum and a young man fighting a dual attack of HIV and TB. We looked at their monitoring sheets, browsed through laboratory test results and revised our management plans.
We approached bed 7. Our patient was in her twenties with a feeding tube in her nose, an indwelling cannula in her vein and a catheter in her urinary bladder. Her face, arms, palms, legs, soles and torso were covered with blisters, most of them drying. Her mucous membranes- ocular, oral and genital- were ulcerated and crusted.
My residents correctly assigned her a diagnosis of Stevens Johnson syndrome – a life threatening skin disease in which cells rapidly die causing epidermis to separate from dermis. We discussed how some seemingly innocuous drugs can hit the skin so badly, how to distinguish this disorder from toxic epidermal necrosis – it’s more sinister version- and shared our uncertainties on the role of steroids. I was about to move to the next bed, when I eyed the haggard face of the patient’s mother at her bedside. I decided to go back to the beginning.
“Tell me her story, in your own words,” I asked the old woman. “It started with a simple fever. She went to a local doctor in her village who examined her and found nothing wrong. He gave her an injection and a tablet to swallow. Within hours of swallowing the tablet, her skin began to burn and the body turned red”, the mother said. “We saw three more doctors in the nearby villages. None of them had an idea of what was happening to the skin. We hired an auto rickshaw and paid 500 rupees to reach this hospital”, her mother said.
My residents gave me more details on the patient. On admission, she had skin lesions that resembled a bull’s eye and few vesicles that dotted her face. The lesions soon spread and several macules, papules and bullae began to drape her body. Over the next few days, lesions erupted in crops. Her eyes were blood shot and mouth, sore. Her skin burned and she could not eat or drink. A week later, the bullae ruptured, leaving her skin denuded.
To restore her system, she needed to consume three thousand calories a day and required supportive care, preferably in a burn unit. She also needed intravenous fluids and electrolytes, steroids and antibiotics and needed to stay for several weeks in the hospital to get back her healthy skin.
I began to dig her past. Our patient grew up in a small village and was married off when she was only 16, the marriage abruptly stopping her education. Her husband, I learnt, was an unskilled labourer and the bread winner for the family. Her mother-in-law, struck by a stroke 6 years ago needed full support for all activities of daily living. And her little daughter, she said, “goes to a school in the village.”
Her mother stood nearby, holding her daughter’s weak hand as she sipped some water. Wrinkles of worries creased her face. Her son-in-law was running errands between the patient’s bed and the hospital drug store, buying her antibiotics, steroid injections, catheters, IV access devises and emollients. Although our teaching hospital offers subsidized care to the patients, they have to pay user charges and spend out- of- pocket on drugs and food. Every prescription that our residents wrote and handed over to him, made a hole in his pocket. Left with no money he had gone back to the village, confused and depressed. His wife needed to be in the hospital for at least two more weeks. There was no one to look after his old mother at home. He had no options but to take loans or sell his meagre assets if his wife was to earn her healthy skin again.
I learnt an important lesson. During our ward rounds, we question our patients, listen to our residents and elicit physical signs. We discuss, debate and critique diagnostic tests, treatment options, and prognostic indicators at the bedside. When challenged with a complex patient, we try to make an accurate diagnosis, using the best of art and science. The joy of making a rare diagnosis and solving a clinical puzzle often boosts our ego and fills our heart with an orgasmic pleasure. And as we pass by each bed, deciding on the likely diagnosis and the best treatment, we use esoteric phrases and pompous jargon to show our knowledge, to out-smart each other and take fierce pride in invoking statistics from the latest journal article. But how often do we detour into such non-academic issues as the social cost of an illness? How often do we pick up and address unvoiced concerns and worries that our patients, their families and friends carry? How often do we discuss the impact of illness on home economics?
Our medical students, interns, residents and young consultants need to know that hospitalisation can impact the family budget in a big way. And we need to learn that if we want our patients to leave the portals of hospitals in a happy frame of mind, we must delve into the depths of health economics in our bedside discussions.
Like beauty, Medicine is skin deep.
I am sure that there are not many teaching hospitals where this aspect of the disease management is “taught’. I am proud to be trained in that institution.
Dear Sir,
In a country like ours we cannot afford to forget the healh economics, before taking any decision.It is very easy to scold a patient for not complying with treatment, not taking his cardiac drugs regularly, but when he tells you that his drugs cost him more than 50 % percent of his monthly income and he is the sole bread earner of a family of 7, we realise that he certainly has no options.
Govt has schemes for the poor in the form of some essential mediations in the primary health care centres, rural hospital ,but rampant corruption does not let any help reach the poor.
Even a little precaution while writing our prescription to ensure we dont add a lot to his burden might be of some help.Long way to go………….
A very true comment.I remember how as a trainee intern in MGIMS our patients had to unfortunately pay for the cost of our inexperience with venepuncture and cannulae.I also saw how as an SHO in Chennai patients were bankrupted after a few days in ICU, costing abt 10,000 rupeees per day on average even if physician fees were waived.Here in the UK with medical care being free for inpatients,we only delve into the physical and psychological aspects of the disease and our treatment.I look forward to a day when an optimal solution can be found to ensure all our countrymen get affordable quality healthcare…not sure when or how!
I believe most of the things of our use are skin deep except our feelings and emotions!….which are connected to our thoughts and thus make us act , and which make us what we are!
As always very well written, and how very right! I will look forward to reading more blogs from you, over time.
Is there any facility to help such patients other than health insurance and waving off the bills?
Ramji
Thought provoking.
Respected sir,
It is a paradox in India where most of us like watching IPLs involving millions of dollars as millions continue to die of curable diseases. If there is so much privatisation of cricket running successfully in the country, why not health.
Why is it that cricketeers are BOUGHT in spite of them having a fair chance of scoring a duck?
On the other hand, the young woman in this touching story, lies in disparity, in her bed with a 50 percent probability of death (50% of life… simple maths). Is there enough money to buy runs and lesser money to buy some moments and trade life. Can't there be a Health Premier league… Fund a patient and get tax relief… Can't there be equity and equality in healthcare or may be by some other idea…..
It is after few sentences that the number of full stops in my writeup increases. I start hoping! We are trying to solve the problems but they need more consolidated efforts. We do have schemes but we need to bring these to the bedside.
Medicine as it seems is a melodrama. It has exaggerated emotions and problems with the same stereotypical characters- an ailing human and another concerned and trained one. Being the latter makes us feel concerned for the former who share the stage with us. It is our duty to try to resolve these problems.
Kalantri Sir, in his aweinspiring style, provided the essential first step to resolve the issues by sensitizing us. Perhaps much lies ahead.
Sorry for being a bit long…
Rishi
Respecteed Sir,
As rightly pointed out, this is the SAME situation faced by almost all of us working in a rural setup hospital, like ours. Cost of hospital treatment is the biggest (perhaps the 1st)obstacle in our country to access any medical services. Though we are trying our best to cut down cost by providing medicines from hospital stock / arranging it directly from the stockist etc. Still patients have to pay a lot from their own pocket. In metros (like Pune) people are very likely to be insured from the employer / own private medical insurance, so as to pay their costly hospital bills. But recently Govt of India has initiated "Rashtriya Swasthya Bima Yojana" which is of great help for rural population. Let us see how this benifits our needy patients..
Wow !!!!!!!!!!!
So many comments in under 24 hrs
Sir has indeed touched the Achilles Heel of our medical system
Time for individual Introspection rather that politicizing the issue , I must say .
How many times do we hold the patient's hand to empathize and not to examine ? Do we teach our students to look listen and feel with compassion and not just for breath sounds ? Indeed medicine is skin deep
Sir, only a passionate Professor of your kind can think this way. It reminds me of my Sewagram days, when you used to waive off all the non-affording bills of many patients and Dr. Ulhas Jajoo insured many nearby villages for mere a pile of grains from the fields. You surely deserve the status of the Best Rural Hospital where humanity runs ahead of economy. Unfortunately, I can try such merciful waive offs only rarely in Mumbai.
Dear SP,
I read your blog with deep interest. The present cost of medical treatment can go beyond reach even for the middle class. The situation described by you can be seen in many hospitals in India. What we need is Comprehensive National Health Insurance that covers everything for everybody throughout the country. Otherwise the benefits of modern medical science & technology would reach only privileged few.
I very clearly remember a dyspnoic young boy in ICU suffering with pulmonary kochs, who was not maintaing oxygen saturation without oxygen and was also on ionotropic support. When we as residents explaind the seriousness to the mother,she had no expression of either worry or sorrow, but was quick to say that stop all the treatment as I want to take my son home right now. We were surprised . On probing as to why she wanted to take her son and not continue with the treatment, what came as her reply made me numb for some time. What she said was," I know my sons condition is bad.He in all probability is not going to survive.Now if I take him home alive may be in a serious state ,an auto rikshaw wala will charge Rs 10 whereas if i take a dead body home he will charge Rs 500. I will infact perform the last rights of my son in that amount.
We as doctors should look at all auspects during a course of treatment.
Need of an hour is a well planned National Health Insurance .
I will look fordward to read more blogs from you
Dear Sir
Good morning and Saprem namaskar.
“Yes we certainly need to have a reserve heart and long tracts free of “ multiple sclerosis” and sole sympathetic predominance to experience the pain and sufferings and to have due considerations for this core issue to resolve this particular syndrome”
I would like to salute the sympathetic humaneterian perspective that have always been taken into consideration at MGIMS.You have utrightly emphasized the concerned issues in your blog whch are absolutely touching and stunning.
At many instances we came across the helpless situation and came forward with reliable cooperation, however needs further considerations, nonetheless, MGIMS has its ubiquatous insurance facility for the rural people that they avail by depositing cotton & Jowar. Prof Jajoo in particular always emphasize to prescribe the safest and cheapest drugs to the poor people just to titrate agianst the HARD EARNED MONEY ( to understand you first need to sweat that way!) . One can ONLY understand and realise the pains if have experienced or seen the cry from very near . Yes we certainly need to have a reserve heart and long tracts free of “ multiple sclerosis” and sole sympathetic predominance to experience the pain and sufferings and to have due considerations for this core issue to resolve.
During my residency I remember a young boy came from Arvi with Snake bite. Father exhausted with ASV that needs to be replaced to ICU. I personally talked to the Govt Hsp at Arvi and they supplied 20 vials of ASV and the problem was solved to the better extent. Our hands should be ready and eyes needs to be kept open. Many patients, especially of RHD, we called for the examination, how many of us have attempted to help them form the heart after the exam is over. We need to at least direct them in a proper way. It is done only by the persons who has special considerations. The Superspeciality hospital , CVTS dept ,Nagpur is offering better services to the RHD patients(BPL) with Govt’s cooperation.
Yes, the beauty of a doctor lies bedside. The confidence we learned at MGIMS is all gifted by you all devoted teachers.To serve the rural and poor masses, it’s alone is not sufficient , we certainly need financers, much cooperation from all sides and integrated efforts all round.
With knid regards and best wishes,
Dr. Dhananjay Parshuramkar
This comment has been removed by the author.
Dear all
It is very true we copied all pages of British constitution except the Health care delivery which is very unfortunate. Since Independence many reforms were made but couldn’t contribute to strengthen the Public health system instead we are talking of Public private partnership.
Coming to Health economics aspects, there is an urgent need for looking into public demand Vs Utilization of services Vs what we are offering.
if we see, HIV/AIDS the prevalence is 0.6% and system is offering ARV i.e 27 Rs per pt per day apart from other services. if we compare this with Non communicable disorders for which we provide minimal attention, there are no real estimates even but different studies reflect about 30-60% of adult population have one or other disorder contributing to huge loss of productive years. These require 2 Rs per day on average. Even this we are not offering from Public sector.
There should be a rationale in budgeting national health programmes or should go as per the Public demands.
As said by Dr. Joseph Pizzorno in his book Total wellness as “Half the costs of illness are wasted on conditions that could be prevented” there is also time to think on prevention to get these costs converted into needy.
Even regarding drug procurement to prescription, costing and availability there is need for some reforms at all levels from country level to practitioner level. I don’t hesitate or regret to say that more than 95% of Indian private health care is being hijacked by pharmaceutical companies leaving poor patient to pay for it.
Do we really care for patients (not even a single time in history there was a strike to decrease the costs of essential drugs by doctors). I am not provoking for it but time to think.
So it’s the time to start momentum
Let’s start answering this list for every patient
1. Is our prescription rational?
2. Can the patient afford the treatment?
And not let any make these comments again
“Our doctor would never really operate unless it was necessary. He was just that way. If he didn't need the money, he wouldn't lay a hand on you”
A sad truth. Unfortunately, medicine provides only sub optimal solutions for the treatment of a patient (as against treatment of a disease).
This actually highlights a number of contentious issues –
a. A doctor's desire to prove his worth to himself, his peers and to his patients (very understandable),
b. Market forces, ( and, also, perhaps greed )which lead to price hikes for essential drugs,
c. The unavoidable need to train a newer generation of physicians, which may require us to prolong a patient's stay in hospital for providing the evidence base for diagnosis and treatment.
d. Our favourite whipping horse – the public health system – which never seems to deliver, leading patients to pay out of their pockets for medical help.
Is there a simple (or complicated, for that matter) solution for this ? I do really wonder.
Perhaps nature's inexorable laws give no leeway for the weak when it comes to survival.
Best,
Prabha
Respected Sir,
This is the situation for most of the patients who are admitted not only in our hospital but others too. Replying to the question put forth by Ramji Sir, I feel Rajiv –Arogyashri Scheme in A.P. is the only solution to this problem. In this Scheme patients who require referral to higher center but who cannot afford the treatment due to lower social economic class can avail free treatment from not only a government but also a corporate hospital (Specialized for care of particular group of Patients e.g. Care Hospital for Neurology and Cardiology, Yashoda Hospital for Cardiology and gastroenterology). The corporate hospitals are paid by the government as per the actual expenditure which is much less than what is charged by the hospital on routine basis. Also 10% of the patients are subjected to completely free treatment.
However in our setting where this type of scheme is not available, we can cut down the cost of treatment at least by half by prescribing cheaper brands instead of expensive ones. Just one change in the prescription can bring smiles to patients face and make him more compliant about his medication.
Another aspect which one must remember is to avoid any unnecessary admissions as these admissions directly or indirectly affect the patients and his/ her relatives in a massive way financially, mentally and physically. These admissions lead to loss of wages of the patient and most of the family members for at least 2-3 days.
Udit.
Very well put and extremely evocative. Your writing strikes a chord. Would love to know how she did.
Indeed a moving story. I think my interest in the personal narrative of each patient rather than their catgorisation into a diagnosis led me to psychiatry. Unfortunately more and more the bureaucracy in the NHS demands diagnostic cateories and respective ICD codes. At least the NHS can offer everyone free treatment and patients do not have to make the terrible choice particluarly on their loved one's behalf to decide if its worth spending their limited finances on treatment.
Dear SP,
Your concern is genuine and MGIMS appear to be heading in right directions with Jajoo sir's insurance scheme,which is the only answer for complete health care in rural India.The future appears bright with changing political scene.Yes I am with our youngsters who believe in Rahul !
VK Gupta
[email protected]
Sir,I wish each one of us thinks like you. only then would we actually live up to this "noble profession" that we are supposed to be in. Very well written…strikes a chord deep down in the heart..makes me ponder everytime I see a patient now.Thankyou so much Sir.