Witnessing bottled-up sufferings…story of Nathu and many others…

Dr. M. R. Raja gopal
Chairman, Pallium India

Dr M.R. Rajagopal, Chairman of Pallium India, and Director of the WHO Collaborating Centre for Training and Policy on Access to Pain Relief, Thiruvanathapuram, India writes about his experience accompanying a palliative care physician in Jamnagar, Gujarat.

Three tiny homes open out to a narrow courtyard.  An elderly man reclines on a cot under the shade of the small solitary tree, a toddler nestling to his chest.  An amiable cow stands close by, contemplating the charming scene.  I walk behind Dr Jitesh Sarvaiah, the palliative care physician at the M.P Shah Government Medical College Hospital, Jamnagar, Gujarat, expertly dodging the friendly moist tail that the cow offers to caress me with.  

Small that I am, I still have to stoop to get into the one room hut. When my eyes accommodate to the relative darkness, two eyes with a hunted expression greet me above a mass of rags.  

Nathu (not his real name), 28, has advanced cancer of the tongue.  The word “advanced” seems so very inadequate to describe what Nathu has. I get to see it in a few minutes – when Jitesh has cleared enough space for us to perch on the rickety bench.  The eyes sparkle in response to Jitesh’s smile and greeting.  Nathu cannot talk. He seems to be asking Jitesh to take a look. Putting on a pair of gloves, Jitesh gently pulls the rags on Nathu’s neck to a side.  As he does, Nathu coughs, and from the now-exposed tracheostomy, a projectile of sputum hits me on my cheek.  Nathu’s elderly mother gasps.  A tear wells up in Nathu’s eye.  What would the composition of that tear be?  A blend of guilt and total, sheer  helplessness?   Does he hate himself at that point of time? I want to reach out to him, but Jitesh is already working on that neck.

The tracheostomy seems to arise from nowhere.  Beneath the angles of his mouth, Nathu seems to have nothing – till his chest seems to start at the end of that gaping hole.  Nothing at all, till Jitesh switches on his torch. Now, deep in there, I can see a yellow mass of tissues surrounding his spine. Most of his lower jaw and neck have been eaten away by cancer – leaving a cruel, sharp, knife-like piece of bone under the right ear.

Just a week back, Jitesh says, maggots had crawled over that neck.  Jitesh, working alone, had gently held a piece of gauze soaked in turpentine oil over the wound and had then removed the maggots one by one.  It had taken a long time, but now the wound is maggot-free.

The mother thinks Nathu has diarrhea. Nathu protests.  He had had constipation for a while.  Does Nathu now have overflow incontinence?  Jitesh wants to do a rectal examination.  Nathu agrees.  Nathu’s brother helps to turn him to a side, while Jitesh puts on another pair of gloves.  The rest of the family moves out of the room. I try to shut the door to give Nathu more privacy. The door comes loose in my hands.  The hinges had been gone these many months. Nathu’s brother picks up the door and balances it precariously against its rotting frame.  

Nathu is indeed constipated. Jitesh removes the hard fecal matter with his fingers, puts it in a plastic bag for disposal and cleans Nathu up. Prescriptions are written, the wound dressed, and we are almost ready to go.

Nathu has a question for me, mostly using sign language. Could I help to end his life?  He had been making this request to Jitesh for weeks now, and Jitesh was not obliging.  Could I?  

I sit down again and hold his hands. That is not enough.  Nathu is looking at me with pleading eyes. He wants an answer.  I wish he could talk so that I could help him to unburden part of the suffering bottled up in him. But he cannot talk; nor can he write.  Feeling very inadequate, I offer to pray that he lives with as little suffering as possible.  A tear rolls down what is left of his cheek.  As I reach forward to wipe that tear, he grabs my hand and holds it close to his eyes and weeps. A minute of silence and then Nathu’s sobs subside.  As we leave, his eyes smile at us, finally.

We now move to a second home, in the autoriksha that Jitesh has hired for the evening. The road is cruel, the autoriksha practically jumping over boulders.   The driver never takes a break from chewing paan, a killing combination of tobacco, betel leaf, betel nut and lime and periodically spits luxuriously on to the road. We reach another hut. The 45 year old man wearing dirty clothes has advanced cancer of cheek. He is on morphine and has excellent symptom control. He has a huge plastic ash tray near him; it is quite full.   But there is tension in the home.  He refuses to stop smoking or drinking.  Everyone wants him to stop.  Why should he stop at this advanced stage of the disease, we debate.  It is the only possible pleasure that he can have in these last few weeks or months of his life. But where will the money come from?  His wife is the only earning member of the family. If the pittance that she earns is spent on cigarettes and illicit liquor, how will the family eat?  We dispense medicines and leave, with the question unanswered.

The next family is visibly rich. The important looking men in the living room completely ignore us as we advance to the bed room. The elderly man with incurable cancer has a huge liver and has hiccups.  Many members of the family hover around as Jitesh adjusts his medicines.  Is there no chance at all of a cure, the son asks.  The patient looks on, seemingly unconcerned at the reply.

We had started the tour at 4 PM, after Jitesh had finished his routine work in the hospital. The sun is setting now. Our fourth and final visit is to a very narrow, tiny room that houses an elderly abandoned woman.  

Her husband died long back, and the married daughter lives elsewhere.  The woman has advanced cancer of the cheek and cannot talk.  Jitesh had found her a few weeks back, with no food and no support.  Jitesh would give her 200 Rupees during every visit out of his own pocket, so that she can get someone to give her food.  Jitesh had tried to talk to the neighbors who were all relatives.  None of them wanted to help; the woman was quarrelsome and would only abuse them, they said.  But today, a teenaged girl wanders in to watch, a distant relative.  Her pretty face is marred by the stained gum and teeth - she is chewing paan like almost everyone else, busy investing in her own personal cancer for the future. Jitesh does his ministering of the old woman and the girl comes forward to help. The woman asks for money. It changes hands, and the woman blesses us.  Will she help the woman, Jitesh asks the girl. She nods as if to say, she will try.  Could that be the beginning of involvement of the neighbors?  We leave, hopeful.

The palliative care service in Jamnagar in Gujarat was started as a Pallium India project by Professor S.K. Agarwal, the head of Radiation Oncology at M.P.Shah Government Medical College.  In projects like this, Pallium India works with funding agencies and with local enthusiasts and institutions, especially in states with little or no palliative care service, and provides for palliative care training for a doctor and a nurse and ongoing support for a take-off period.  Dr Agarwal, a great humanist who had built the Department of Radiotherapy in Jamnagar from scratch, had worked with Pallium India to add the palliative care service.  Dr Jerina Kapoor, founder president of Pallium India-USA got together several Americans of Indian origin to fund the project. Dr Jitesh volunteered to undergo six weeks’ training in Trivandrum and on his return to Jamnagar in February 2012, started the palliative care service.  Jitesh does his regular job as a tutor in Radiotherapy and combines the clinical Oncology work with palliative care. He found the patients who could no longer come to hospital for review and started making home visits to them. Till recently, he had used his own motorbike for the home visits, but it was difficult to carry the supplies and eventually, Dr Agarwal managed to get the Government’s Non-Communicable Diseases program to fund the hiring of an auto-riksha for the purpose. Sheer luxury now!

Dr. Jitesh near his home care vehicle-  the government sponsored Auto-riksha,  to carry medicines and other things needed for home care

Through the day, we did a program review, a planning session and interviews.  Jitesh must get the help of a nurse and a social worker. The medical superintendent is supportive; he will help. A retired nurse is willing to get trained and join the service. The service needs support from the community.  The state of Gujarat has been very progressive of late; the time appears to be ripe for palliative care planning.  Just a couple of days back, the Commissioner and Principal Secretary of Health, Mr P K Taneja had called a meeting to plan incorporation of palliative care into Gujarat’s health care system.  Pallium India has offered to work with Dr Geeta Joshi of the Regional Cancer Center at Ahmedabad and with Dr S.K.Agarwal of Jamnagar to prepare a concept paper leading hopefully on to an action plan. We are moving forward!

And move forward, we must.  There is this huge gap in India between the hospital and the home.  The health service is visibly improving in most of the country in the last few years.  But it still caters largely to curative treatment alone. The Government’s Non-Communicable Diseases program has begun to make a change, but is yet to incorporate palliative care, with the result that those with incurable diseases are left to die in their homes in misery, the dwindling family structure sometimes failing to offer even companionship.

In India, “the patients often see death as the only option”- Reports French News Paper ‘LeMonde’

“In India, the lack of trained medical personnel and highly regulated use of morphine prevent almost all of the population access to palliative care. Considered by the World Health Organization (WHO) as the “reference product" for pain relief, morphine is accessible only to less than 1% of the Indian population. Whether to import from one Indian state to another, the storage, transport or prescription, each step needs multiple administrative authorizations. Violations of law are punishable by a non-bailable imprisonment. Many hospitals and pharmacies have hence abandoned the use of morphine for fear of sanctions and to avoid endless administrative procedures. These very strict rules were set-up in 1985 by a law aimed to fight against trafficking and consumption of narcotic drugs, without consideration to the use of morphine for medical purposes. Opium, which helps in its manufacture and grown in India, is mainly intended for foreign countries: 500 tonnes are exported each year, or 200 times the annual consumption of the country.”The report says. 

The original article is available at http://www.lemonde.fr/planete/article/2012/08/24/les-soins-palliatifs-peu-accessibles-dans-les-pays-pauvres_1751048_3244.html

 Read the the English  translation of the article below:

" PALLIATIVE CARE INACCESSIBLE IN THE POOR COUNTRIES"

 

 

Indifference or legal restrictions in the use of opium prevent in easing pain at the end of life. A "Human Right” for the NGO Human Rights Watch

Tens of millions of people around the world do not have access to medication against pain. This is because of the indifference of authorities with respect to this problem, or due to legal and administrative restrictions in the use of major analgesics such as opioids.

In a public report in June 2011, the Human Rights Watch (HRW) organization recalled that “60% of people who die each year in the low or meager income countries, or an impressive figure of 33 million, need palliative care”. The NGO calculated that “more than 3.5 million people with a terminal cancer or AIDS die every year without adequate analgesic treatment”

One of the explanations is the single convention on Narcotics, adopted in 1961 by the United Nations. It recognizes that "the medical use of narcotic drugs continues to be indispensable for pain relief" and that "the appropriate measures should be taken to ensure that narcotic drugs should be available for this purpose”

But it says, at the same time, that “addiction is a curse for the individual and constitutes an economic and social threat to humanity” against which we must fight. A dual obligation for the States, hence, to which the International Narcotics Control Board (INCB), based in Vienna (Austria), complies with.

Problems, health concerns come after law enforcements. Senior researcher at the Health and Human rights department of HRW, Diederik Lohman explains: “At the end of life, people with incurable diseases, like cancer, needs to be relieved with Morphine. However, in the context of the war against drugs, regulations and laws have been set-up, and they constitute obstacles to the fight against pain. The patients are invisible collateral victims."

The report from HRW gives an overview of the problem. The organization which has reviewed 192 countries, note that in 35 of them, less than 1% of patients with moderate to severe pain, due to terminal cancer or an HIV infection actually benefit from powerful painkillers that they need.

Most of these countries are located in Sub-Saharan Africa, but others are in Asia, Middle-east, and North Africa or in Central America. For example, Nigeria, where every year, more than 173,000 patients with terminal Cancer or AIDS would require analgesics to relieve moderate to severe pain, only 274 patients benefit from administration of opioids.

The territorial inequalities are reflected in the medical use of morphine: nearly 90% of the global consumption is due to North America and Europe, while the countries with low or meager income represents only 6%, although they contain nearly half of the people suffering from cancer and more than 90% of patients infected with HIV.

Traceability of opioids

Other intervening factors. Ukraine, for example, offers Morphine only in oral form. The injectable form of the drug is used to treat chronic pains, as against the recommendations from World Health Organization. But these injections should be administered by a health professional which in fact, restricts its use.

Among the barriers to the access to opioids, states a 2010 report from INCB, shows the fears of health professionals to cause an addiction to the patients – although the studies have demonstrated that this is not the case – and the inadequate training of health care providers. Added to this, according to HRW, the fact that “several countries have adopted regulations that go beyond what is required from the Single Convention, often creating complex procedures to procure, store and deliver controlled drugs that hinder the accessibility for the patients who really require them for medical reasons”.

Hence, in Ukraine, “four signatures from doctors is required to issue an ordinance or modify the dose prescribed for a narcotic drug”, reports Diederik Lohman. Another example; Mexico has created a labeling system with barcodes for prescriptions. “There is only one place in the capital of each State providing Opioids, and the prescriber should himself go there, get the drug, describes the researcher. The pharmacist should provide an authorization but most often he does not have a barcode reader. In other words, the system set-up to ensure a traceability of opioids appears to be an obstacle for the patients and the doctors".

For the last few years, HRW participates in the OICS meetings. It recognizes that the UN body follows a positive trend, with more emphasis on the need for access to major analgesics. HRW do not appeal unless the States do everything possible to meet what it considers a “human right”.

In India, “the patients often see death as the only option”

In India, the lack of trained medical personnel and highly regulated use of morphine prevent almost all of the population an access to palliative care. Considered by the World Health Organization (WHO) as the “reference product" for pain relief, morphine is accessible only to less than 1% of the Indian population. Whether to import from one Indian state to another, the storage, transport or prescription, each step needs multiple administrative authorizations. Violations of law are punishable by a non-bailable imprisonment. Many hospitals and pharmacies have hence abandoned the use of morphine for fear of sanctions and to avoid endless administrative procedures. These very strict rules were set-up in 1985 by a law aimed to fight against trafficking and consumption of narcotic drugs, without consideration to the use of morphine for medical purposes. Opium, which helps in its manufacture and grown in India, is mainly intended for foreign countries: 500 tonnes are exported each year, or 200 times the annual consumption of the country.

Absurd situation

“We arrive at an absurd situation where India, which has both opium and numerous pharmaceutical laboratories, is incapable of supplying morphine to its cancer or AIDS patients”, says Dr. Nagesh Simha, President of the Indian Association of Palliative Care. The rate of per capita consumption of morphine is one of the lowest in the world. “The patients who suffer, and whose doctors do not know how to treat their pain or who do not have access to drugs, like Morphine, often see death as the only solution” writes, Human Rights Watch, an NGO in a report published in October 2009 and titled “excruciating pain: the obligation of India to provide palliative care”. Without access to Morphine, the medical personnel abandoned the use of palliative care. This specialty is hardly taught in medical schools and hospices are almost absent in the country. In 1998, the law was amended but only 14 of 28 states integrated the modifications in their legislations. A new law will soon be submitted to the Parliament. “A single central organization should provide all authorizations to expedite proceedings while allowing states to manage the access to palliative care, and especially to alleviate accrued penalties for violations”, argues Nagesh Simha.