To go with dignity!

A recent article I read on the way two rational scientists decided to leave the world was very interesting. (http://www.theage.com.au/interactive/2016/the-big-sleep/) The 87 year old husband and 83 year old wife, with family and friends in the know, took their own life in a planned manner. It was something they had thought about, decided with a rational mind and for which they found support from Exit International, an organization that supports and works for legalizing euthanasia.

In sharp contrast, dying with dignity is becoming difficult for Indians. In the recent issue of Caravan, Jean Jacob writes that “India is a bad place to die in” – which has been my sentiment for a while now (the link does not give full article).  Its a painful article to read but highlights a very pertinent issue for any ageing society, and for each one of us who are care givers to those older than us, and are part of  the one inevitable truth -“time and tide waits for no man”. Jacob recounts the painful story of an 83 year old man who was making the fourth trip to the ICU in a serious state and when the family was asked about advanced life support (ventilator care and other intensive methods) they said they wanted it and could afford it.

Palliative care, a branch of medicine focused on improving quality of life of people with life-limiting illness, is almost non-existent in our country. As per this article on the quality of death index, (yes, there is a methodology to even measure death!!) India ranked 67 among 80 countries. In spite of a WHO directive, we have no national palliative care policy. Geriatrics as a specialty has no status and there are no efforts to promote it. There is a a slow awakening for the need to have the care givers (doctors, nurses, physiotherapists, home attendants) for an ageing population, but the active efforts are few and far between.

And like so many other uncomfortable issues, this is a conversation that individuals, families, society and of course the Government does not want to look in the eye!  In a mature system, individual autonomy of the patient would be respected, and the patient is allowed to discuss and take decisions as to his/her preference for the terminal days of life. This may include accessing ventilator assistance when breathing fails, or intravenous support for drugs etc. or not.  These choices are recorded in a living will, a legal instrument that does not exist in our system. On the other hand, what we see is a frantic, do-all-you-can efforts to which the fragmented family structure subscribes (for often the wrong reasons) and the over-aggressive health system supports. The overall result is that most Indians, have a ‘bad death’, that is dying alone (inside the ICU), often in pain and after a life that has been prolonged by aggressive and de-humanising care rather than a ‘good death’ – peacefully, without pain among loved ones and often at home.

To change this, we need change in the law, change in society, more trained personnel and infrastructure – namely, homes offering palliative care. As this article highlights, Kerala is the only State which has a palliative care policy and has over 200 facilities that offer such case as against 100 in the rest of the country. There is an urgent need to address these issues and I for one would like to have the ‘good death’. And the end,  for our 83 year old man –

‘An hour later, the code blue was announced. Two doctors were taking turns giving him chest compressions when we reached the ICU, and every alarm on his monitor was crying for attention. A nurse was breaking ampoules of drugs  for injections from an emergency trolley, and another was charging a defibrillator. A rib broke. Frothy red fluid leaked out from the ventilator tube in the patient’s mouth. We delivered 360 joules of electricity electricity over his heart. Someone had forgotten to draw the curtains shut, so the last moments of his life became a public spectacle. We continued for half an hour before we declared him dead.

The death-care began. THe curtains were finally drawn around the bed, the nurses started removing his plastic tubes. Besides the one in his mouth, there was one in a vein in his neck, that had sent medicines to his heart; one in his nose, that went down to his stomach, another in his penis, that drained his urinary bladder. After these were all out, the patient’s nasal and anal orifices were packed with cotton. His hands were tied together at the front, so that when the body became rigid it would maintain a posture of dignity. A roll of gauze was wound around his jaw to shut it, and tied into a neat bow over his head. A nurse applied tincture of benzoin to his lips, so that they would stick together and forever seal him in peace.

The body was cleaned and wrapped in a shroud, and a white sheet was placed over it. Later, it was sent to the mortuary. The bed was cleaned ans fresh sheets were laid. THe curtians were pulled open”

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I salute you, JNU!

I have spent all my working life at medical academic Institutions, and have in the latter part of my career been involved in various aspects of medical education including at a policy level. And being a research scientist, have also had long associations with many scientists in a host of Universities and research organizations, including JNU.  But I must admit, that it was only now that I learn of the unique and wonderful admission policy of JNU,  which is

“According to JNU’s admission policy, each district in India is divided into four quartiles. Quartile 1 includes most backward areas and quartile 2 backward areas. Quartiles 3 and 4 are relatively advanced areas.

Students seeking admission in JNU after completing the qualifying degree from institutions in the quartile 1 area get five weightage points. Those obtaining a degree from institutions in quartile 2 areas get three points. Girl students get five weightage points.

S. Chandrasekaran, a former coordinator (evaluation and admission) at JNU, said the policy of giving deprivation weightage had existed for more than three decades. He said no other university in India gave such weightage.

Every district and region in the district is assessed on the basis of criteria such as agriculture production, labour pattern and literacy, among others. The deprivation weightage does not affect the reservations for Scheduled Caste, Scheduled Tribe and Other Backward Classes, he said.

“SCs, STs and OBCs constitute about 50 per cent of the total students. Because of the deprivation criteria, I am sure another 10 per cent would be getting admission. So, 60 per cent should be marginalised sections,” Chandrasekaran said. The university had tweaked the deprivation weightage this year -while earlier,  weightage was given to students, completing their last qualifying examination from institutions in backward areas. students who had done their schooling in backward areas and then gone to a college in the state capital or in advanced districts were being ignored. The changed policy will give differential weightage to students based on their schooling, graduation and post-graduation – now a student will get six points, the break-up being three for schooling, two for graduation and one for post-graduation from an institution in a most backward area. Women students will get four weightage points from this year. The weightage is added to the entrance score while selecting the students.”

It appears that because of this kind of selection process, parents of 40 per cent of JNU students earn less than Rs 6,000 a month. It has more than 60%  students from backwards communities, none of which prevents it from being among the best academically performing Universities in the country.Why was this model not adopted by other Institutions established after JNU?  I would really like to know how this system came to be, at JNU, and even more importantly, how it got the approvals of the powers that be!

In my own profession, there is constant talk on the vagaries in the selection processes in medical education.  The Government has been battling with problems of poor manning of peripheral health delivery centers leading to lack of access to even very basic health care in a large parts of the country. In fact, the less developed and/or more remote the area, less the chances of getting staff to man the health centers.  It is  well accepted  that if more students from backward areas were given opportunities to qualify, there would be more manpower in these areas. Why has  the Government not tried to introduce the JNU parameters of entrance in the Government medical colleges?  I can only assume that the elitist establishment, would not have promoted this concept.I  salute JNU for the opportunities it is offering to young people from less privileged groups.

 

 

 

A matter of shame! and of concern.

A picture taken on January 16, 2016, in Rennes, western France, shows the logo of the Biotrial laboratory

“France drug trial: Brain-dead man dies in hospital”

What is a drug trial? It is a defined sequence of activities that test a potential drug for safety of the patient and efficacy for the condition that it is being prescribed for. A potential drug undergoes many safety tests in the lab as well as in small and large animals before it is tested in humans. This consists of 3 stages –

  • Phase I tests for safety. A small number of people, sometimes healthy, and sometimes with a medical condition, are given a tiny dose of the drug under careful supervision, not to test if the drug works, but in order to check for any side effects
  • Phase II sees the drug given to people who have a medical condition to see if it does indeed help them
  • Phase III trials are only for medicines or devices that have already passed the first two stages, and involve them being compared to existing treatments or a placebo. The trials often last a year or more, involving several thousand patients.

Each country has laws and regulations for the testing and marketing of drugs. Over time these have become stricter. The Indian drug research scenario is rather arid and few original new drugs come out of our system. But we do have laws by which even those tested and approved abroad have to have a final Phase III trial on Indian patients before it gets marketing approval. In the last few years, there has been considerable attention drawn to certain unethical practices in the conduct of these trials which has resulted in Supreme Court intervention and a major slowing of International trials in India.

In the early post-war days of euphoric discovery, there was the Thalidomide tragedy in Germany in the late 1950s. (https://en.wikipedia.org/wiki/Thalidomide) Around 10,000 babies were born around the world without arms/legs etc. after the mothers took  the drug for pregnancy related nausea. Following that disaster, and the many stories of unethical use of prisoners and mental home inmates for drug testing, many regulatory mechanisms were put in place. And over the years, with increasing awareness, there has been increasing demand for transparency in the conduct of clinical trials. In the recent past, the regulations have been considerably tightened and companies have to take all precautions that trials are conducted in an appropriate and ethical manner.

In spite of that things go wrong. About a decade ago, a promising new entity, TGN1412 was given to 6 healthy volunteers (Phase I)  but “after very first infusion of a dose 500 times smaller than that found safe in animal studies, all six human volunteers faced life-threatening conditions involving multi-organ failure for which they were moved to intensive care unit.” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964774/)  And much changed after this experience, and my understanding was that new drugs could not be given to many subjects at the same time in a Phase I study.

Obviously this is not the case as the headline above shows. (http://www.bbc.com/news/world-europe-35337671). The drug was a pain killer and developed by a well established Portuguese company and the trials done by a reputed French firm Biotrials. It leaves many questions for us – while it is indeed a matter of shame that healthy recruits, who are recruited into such studies by appealing on their sentiments regarding service to mankind etc., should suffer such adverse events, there is no alternative testing option to a Phase I in human! So, do we stop drug development? There is a constant demand for new drugs for established diseases, and we keep seeing new diseases as well – Ebola and now Zika!!

Is the ‘sacrifice of a few for the good of many’ an acceptable principle in the 21st century? The drug lobby is large and powerful and in the absence of any viable alternatives, testing will go on. And in this country, where financial reward is an easy inducement, recruitment is never difficult. I can only hope that there is a more intense public dialogue  with an overall recognition that there is a need to re-assess matters, and that no individual is made to make this kind of extreme sacrifice for ‘society’s benefit’.

 

 

Of the dengue epidemic and cartoonists

Keshav in the Hindu on 16th September 2015

Cartoonists really catch the public mood – and Keshav always hits the right spots!!! These 2 cartoons give a great commentary on the current ‘Headlines’ – the dengue epidemic.

Keshav in the Hindu on 17th September 2015

The official statistics is that about 2000 cases have been diagnosed and as of now 15 people have died. (For Delhi, not NCR) This is disgraceful, as it is an infectious disease, which can be completely prevented but has no definitive treatment. And in any modern, functional city, such vector borne outbreaks should NOT happen. But we have to accept that Delhi, or for that matter, any of our other cities, is neither modern or functional.

But let me come to Keshav’s cartoons. The upper one says ‘System of health care’ on the back of a doctor who is examining a dengue patient, and looking at the money. And that is public perception – healthcare means doctors and doctors only look at patients as cash cows. However, healthcare or looking after the health of a group/community/nation is the responsibility of the Government. It starts with intention to provide health care, allocation of adequate funds for this and policies and governance to  achieve desired results. Doctors only form part of the terminal delivery mechanism, along with other health care providers. However, since the health care provider is the point of public interaction, they are who are most often held to blame for failures. And while, many levels and cadres of health care providers play a prominent role in most countries, including our neighbors in Sri Lanka, Thailand etc., we in India have continued a doctor centric policy, that works to the detriment of the profession.

And of course, the failure of the State to take responsibility for the health of its citizens, has encouraged the growth of private providers –  stand alone practitioners, un-regulated nursing homes and hospitals and the more prominent face of healthcare today, the corporate hospital. Corporate hospitals are large businesses, like any other,  with investors and and often share holders to whom they are responsible. Regulating their pricing, goes against the principles of encouraging business.

The lower cartoon captures the essence of governance – problems land on the politicians desk and just stay there. Hollow promises are made at election time, with either no intent to fulfill or inability to do so for any number of factors. In the case of healthcare, it does not even come into the ambit of ‘issues’ that can harvest dividends. And for that we have no one but ourselves to blame – we have accepted that health is a personal issue and so do not make it a ‘political’ issue. Only when something like the dengue outbreak hit us, do we demand the Government to magically deliver.

All this is not to absolve the doctors of their responsibilities. Or to override the fact that the profession itself has played its part for the current state of things  – it has systematically obstructed efforts to regulate hospitals, share the delivery mechanism with other professionals or allow other cadres to be empowered. In actual numbers, the hue and cry is not proportional to the extent of morbidity and mortality – 1671 people (80% young men) died in Delhi last year in road accidents!!! How many of these lives could have been saved with better emergency facilities,. And we are not even talking of the many times larger numbers who are temporarily or permanently maimed/handicapped and have to deal with prolonged treatment and often a life time of handicaps.

The bottom line is that a private sector ‘dominated’ health delivery has not worked in any country – and the promises of ‘health for all’ in the election manifesto has not seen any actual translation into action by this Government. From recent news items it also seems that the Government is leaning towards a PPP/private insurance model for healthcare. THis does not bode well for the future.

But to come back to dengue, there is NO EXCUSE for any death due to preventable conditions. ANd everyone involved has to share the blame – but do they? Will they? And as on so many issues, I bow to the political cartoonist to show us some glim0ses of the truth>

I am confused!!

These are confusing times for those of us who follow the daily dose of ‘news’. I do so, partly because I have the morning paper addiction of many of my generation and partly, I guess because we do need to know the world we are living in.

There is a recurring trend among our political class to make off the cuff remarks, that reflect various shades of ignorance, intolerance and prejudice. These are later revoked, shrugged off or claimed to be a ‘misquoted’.  But the current trend of people within the same party refuting each other in the pubic domain, on important issues leaves me confused. Especially when this is the party that is in power. The most recent set of contradictions relate to the  linkage between tobacco and cancer. This is a well established and universally accepted linkage based on sound research and data.  Even in our country, policies over the last many years have been directed to decrease smoking, with increasing taxes on cigarettes and  compulsory labeling on packets and in movies and TV when any character is smoking. Most of the closed spaces and even open spaces ban smoking and the anti-smoking campaign has had such an impact that even children know about the hazards.

The current issue relates to a commitment made by India, that along with many other countries, that it wound make it mandatory for the the statutory warning “Cigarette smoking in injurious to health” to occupy 85% of the package. The parliamentary committee, looking into the issue has recommended that there should be more discussion on the subject.  They want to re-assess the economic impact of the decision. In fact, all forms of tobacco use (smoking, ingestion, inhalation) are harmful and in India beedi smoking is more prevalent than cigarettes. But no Government has ever taken any measure to restrict beedi sales, citing the very same reason – economic impact and loss of livelihood. Its almost as though, the health of the middle class (who are the cigarette smokers) is more important than that of the lower classes who smoke beedis!! Both the current and the earlier Health Ministers had made their strong support for anti-cigarette measures known.  So, the present stand  has led to speculations about the  Government-tobacco industry nexus, which was also rumored to be the wheels working behind the removal of the previous Health Minister.

But it is another aspect of the Committee’s (or is it just the Chairman’s) views that is alarming, if not ridiculous!! The justification for their decision is given as “No Indian study links cigarettes to cancer” and then others from the same party call this statement ridiculous and ask us to ignore it.  This maybe all staged drama, as some are suggesting, or not. But it is alarming when the  lack of a “scientific temper”, prevalent in the Indian public at large, reaches the halls of our Parliament and Government. It maybe argued, that these gentlemen and women are elected from amongst the very same ‘public at large’. All I can say is that I, an ordinary citizen, am confused and groping in the dark – who to believe, is it a real difference in perception, is it staged, what is the role of the media channel and their corporate master??? I do not see any light at the end of this particular tunnel!!

There have been many other issues (which are more political) on which contradictory stands are espoused within hours of each other from within the same political alignment. And it is confusing! It has been sometime now, since I have opted out of watching any of the news channels  and felt a small load off my back with that decision.  But, there are the phone alerts (which I plan to switch off), various blogs you have signed on to, forwards through FB and from friends. And of course there is the morning paper – so maybe I need to work towards a sabbatical from all these sources. And then I maybe less confused…..