On Saturday, January 28, Pallium India-USA and the community of Silicon Valley, California were honored with a special guest.

Pallium India chairman Dr. M.R. Rajagopal gave a talk to a full house at the private home of Dr. Jyoti Lulla, a well known and respected Saratoga physician and community member.

The event, organized by Pallium India-USA, was well attended by many physicians, healthcare workers, Silicon Valley executives and engineers, and others who wished to learn more about the work Pallium is doing in India.

Pallium India-USA Volunteers

Dr. Jerina Kapoor, chair of Pallium India-USA introduced Dr. Rajagopal.

Dr. Rajagopal’s hard hitting and at times emotionally intense talk took on the serious problem of suffering and pain relief in India.

He told two stories: one of a poor woman, Sangeeta, whose mother was dying of cancer. Her own future was foreclosed on as a result of the impoverishment created by the absence of an adequate medical and social system. The second story was of a wealthy man, Mr. Das, who nonetheless was traumatized by his doctors’ insistence he undergo needless life-extending treatments.

Dr. Rajagopal challenged the audience to think about and plan for their own future.

“Most of us won’t have the good fortune of an instant death,” he said. “The majority will have a prolonged decline.”

A lively and passionate discussion followed his presentation. The quality of the talk was a sure sign that positive change is possible when it comes to caring for the seriously ill and dying around the globe.

In all a very successful event.

Joint pain ails the elderly in Tamil Nadu; hypertension in Kerala

AARTI DHAR – THE HINDU - NEW DELHI, December 29, 2011

The commonest self-reported morbidity among the elderly in Tamil Nadu is chronic joint pain, while in neighbouring Kerala hypertension is highly prevalent, according to a new study conducted in the two States.

Over 57 per cent of senior citizens in Kerala suffer from hypertension and 32 from diabetes. The figures for Tamil Nadu are 20 and 14 per cent.

“The elderly are an important segment of our population. They have played a key role in shaping the future of the young India. Their share is expected to be at 12.4 per cent by 2026 [as per the Central Statistical Organisation's Situation analysis of the Elderly in India, 2011].” Therefore, it is essential “to make special provisions for the health care of the elderly and, in particular, offer treatment and diagnostic services for the management of non-communicable diseases. Also, it is essential to immediately initiate screening of people over 50 for key non-communicable diseases and simultaneously start health education for the ageing population,” says K. P. Rajendran, team leader of the research study.

The study was undertaken to validate the improvement brought about by projects run by HelpAge India and Cordaid (Catholic Organisation for Relief and Development Aid). It was done by the capacity-building organisation Four X 4 Consulting with support from the Institute of Palliative Medicine, Kozhikode, Kerala, and the Manakula Vinayagar Medical College and Hospital, Puducherry, covering 1,800 families in Tamil Nadu and 450 families in Kerala by random sampling.

In Tamil Nadu, the commonest self-reported chronic morbidities among the elderly were joint pain (61.3 per cent), eye and ear problems (38.4 per cent), hypertension (20.7 per cent), diabetes (13.9 per cent), heart diseases (4.4 per cent), respiratory illness (2.9 per cent), stroke (1.2 per cent) and mental illness (0.6 per cent).

In Kerala, 71.6 per cent of the elderly had at least one of the chronic morbidities at the time of survey with hypertension topping the list (57.3 per cent), followed by joint pain ( 37.5 per cent), diabetes and ear/eye problems (32 per cent each), heart disease (17.1 per cent) and asthma (11.4 per cent).

In Tamil Nadu, most of the chronically-ill elderly people (46.5 per cent) accessed government health care services and 31.4 per cent went to private hospitals. Five per cent accessed health care offered by village-based clinics of the HelpAge programme, while 15.2 per cent took no treatment. Utilisation of the Indian systems of medicine was less than 1.5 per cent on average.

In Kerala surprisingly most of the elderly received treatment from private hospitals (55.8 per cent) and 34.6 per cent from government hospitals. Five per cent adopted the Indian systems and 2.4 per cent did not take any treatment.

The study covered four domains of quality of life — physical health, psychological health, social relationships and environment.

Interesting that in Tamil Nadu, the majority of the elderly sought help from the Government agencies while Keralites seemed to seek private hospitals?

Why? Do Keralites have more money? Or is the Government’s health system better in Tamil Nadu than in Kerala?

Pain caused by a lesion or disease of the somatosensory system.

IASP offers the following footnote to the definition:

Neuropathic pain is a clinical description (and not a diagnosis) which requires a demonstrable lesion or a disease that satisfies established neurological diagnostic criteria.

The term lesion is commonly used when diagnostic investigations (e.g. imaging, neurophysiology, biopsies, lab tests) reveal an abnormality or when there was obvious trauma.

The term disease is commonly used when the underlying cause of the lesion is known (e.g. stroke, vasculitis, diabetes mellitus, genetic abnormality).

Somatosensory refers to information about the body per se including visceral organs, rather than information about the external world (e.g., vision, hearing, or olfaction).

The presence of symptoms or signs (e.g., touch-evoked pain) alone does not justify the use of the term neuropathic. Some disease entities, such as trigeminal neuralgia, are currently defined by their clinical presentation rather than by objective diagnostic testing.

Other diagnoses such as postherpetic neuralgia are normally based upon the history.

It is common when investigating neuropathic pain that diagnostic testing may yield inconclusive or even inconsistent data.

In such instances, clinical judgment is required to reduce the totality of findings in a patient into one putative diagnosis or concise group of diagnoses.

The previous definition by IASP (1994) had read:

Pain initiated or caused by a primary lesion, dysfunction or transitory perturbation of the peripheral or central nervous system.

The new definition takes away the word “dysfunction”.

In their editorial commentary, “A new definition of neuropathic pain” in Pain, 152 (2011) 2204-2205, Dr Troels S Jensen and colleagues explain why…

“Clinicians with neurological training and background have found it difficult to accept conditions in which symptoms and signs were not reflected in abnormal neuropathophysiology”

The new definition also specifies “somatosensory system” instead of the earlier more vague “nervous system”.

Amidst all the sadness, is it not heartening to see that someone cares?

The Assistant Sub-Inspector of Police, Mr Vijayraj, found Vasantha and brought her to us – giving us the privilege of doing what little we could to ease her suffering.

C. Maya reports in The Hindu on World Palliative Care Day:

For some respite from the pain

The Hindu: For some respite from the pain

Vasantha is just 37. But as she lies on the hospital bed, floating in and out of consciousness, she looks a hundred years old.

Painkillers coursing through her system sustain her through the day, giving her some relief from the unrelenting pain of cancer. But the anguish she goes through, just looking at her two young girls by her bedside, cannot be dulled by a shot of morphine.

Vasantha’s physically challenged sister, her sole caretaker, is helpless every time Vasantha cries over the fate of her children. Vasantha was brought to the palliative care clinic run by Pallium India at SUT Hospital four days ago by Vijayaraj, a palliative care volunteer. He found her at her house in Keezhattoor, Kattakkada, doubled over and writhing in pain. With pain relief and care, she is at least able to sit up and talk now. “All we can do now is to assure her that her two girls – aged 15 and 13 years – will be in safe hands,” says Vijayaraj, an ASI at AR Camp, Nandavanam.

Vasantha had been diagnosed with breast cancer four years ago and she had undergone mastectomy (breast removal) at the Regional Cancer Centre. By the time she came back from the hospital, her husband had abandoned her for another woman. With only an ailing father and a physically challenged sister at home, her hopes died fast.

“She used to go for manual labour and take good care of us. She kept her pain to herself and sent the children away to a charity hostel,” Vasantha’s sister says. She refused treatment because there was no money or support.

“I was fed up. I stopped taking the medicines because they gave me severe stomach upsets and mouth ulcers. I knew I was dying but nothing had prepared me for the pain that will kill me a little day by day,” Vasantha says.

Her children, brought to visit her by a neighbour, looked bewildered. Seeing their mother at peace had given them the tiny hope that she will come home soon.

“It is a sad, sad story and one that we cannot rewrite, however much we would like to. But then, this is the story of every patient we see,” says Dr. Sithara, at Pallium India.

“Think of the others whom we may not see at all, dying painful deaths in some dark corner. How can we, as a civilised community, just stand aside and shun all responsibility? Palliative care is not just about helping one die painlessly but about giving a helping hand to the devastated family to stand up and continue living. A government cannot do that always, but each one of us can,” M.R. Rajagopal, the chairman of Pallium India, says.

As part of this review they have undertaken 22 systematic reviews of topics relating to opioid treatment in cancer pain. These are published in the journal Palliative Medicine July 2011 vol. 25 no. 5389-390 (pubmed).

While they do highlight the limits of research in this field, they do provide the most up  to date  and comprehensive review of what we know about the use and side effects of opioids.

The EPCRC project to revise the European Association for Palliative Care (EAPC) guidelines on the use of opioids for cancer pain

In this special issue of Palliative Medicine, systematic reviews contributing to the development of the revised European Association for Palliative Care (EAPC) guidelines on opioid analgesics for the management of cancer pain are published. This brief comment tries to put this quite unique collection of coordinated articles in the context of the overall guidelines project and to help readers to make the best use of them.

The European Association for Palliative Care (EAPC) guidelines on opioid analgesics for the management of cancer pain were published in 1996 and 2001 and were seen as an evolution of the World Health Organization (WHO) recommendations, developing in detail the role of opioids in the analgesic ladder. The impact of WHO and EAPC guidelines on clinical practice and patient outcomes has never been demonstrated empirically, but it is likely that they had a profound influence.

• Full text here… (subscription required)

One of the most painful sights in many hospitals is that of children with cancer, HIV, burns or other accidents – all going through intolerable and needless pain.

WHO’s Research Agenda for the Treatment of Pain in Children

The World Health Organization aims to revise and publish an updated version of the 1998 guidelines Cancer Pain Relief and Palliative Care in Children (pdf) with an addition of other medical conditions with persisting pain: later this year, the WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses will be published.

A part of this guideline entails WHO’s research agenda, which highlights critical research topics of paediatric pain treatment. The research agenda was recently published. The article calls on researchers to focus their studies on one of the proposed topics.

Download: WHO Calls for Targeted Research on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses (pdf)

Research areas that need critical attention are: clinical studies on paracetamol, NSAIDs and opioid analgesics; clinical studies on adjuvant medicines (antidepressants, gabapentin, and ketamine) for neuropathic pain; safety and dosing of non-opioid and opioid analgesics in different age groups as well as dose conversion of opioids; and pain assessment tools for children.

In addition to the pharmacological research that is proposed in this WHO publication, we hope there will also be enough social research about getting the available science to reach the needy.

Is that not the major cause of unalleviated pain in the world – the failure of available knowledge to reach the needy?

Some things, like pain, know no borders. The reaction of insensitive doctors to someone else’s pain is another.

Ruth (not her real name) had grown up in USA. After she lost her husband to cancer, she migrated to Thailand, and worked as a Professor. Unfortunately, she had a fall, and there followed physiotherapy which included some form of electrical stimulation.

One day something went wrong. An accidental high strength of current, her leg shot up, out of control and she had agonizing pain.

What followed was a nightmare – doctors refusing to believe that she had pain, eventually finding that she had damaged nerves (during the abnormal muscle contraction following the electric current, she believes) and yet would not, or could not, relieve her pain.

Eventually she got to the pain management team at Siriraj Pain Center in Bangkok, run by Dr Pongparadee Chaudakshetrin, where she got some relief, enough to start working again. She still has to take opioids, along with physiotherapy and complementary therapy, but now she is earning for herself and building herself a life again.

There has to be a way by which stories like hers should be common knowledge to medical students and doctors. That would be at least of as practical educative value as the latest in the neuroscience of pain!

HRW comprehensively detail the failure of many governments to take even basic steps to ensure that people with severe pain due to cancer, HIV, and other serious illnesses have access to palliative care, as a result, millions of patients live and die in great agony that could easily be prevented.

• HRW press release
• Download the report (pdf)
• Read the report online

Some quotes From Patients and Healthcare Workers Interviewed by Human Rights Watch:

“Before I came [to Kenyatta National Hospital], I couldn’t eat or breathe well [because of the pain]. Now that I have been given medicine [morphine], I can eat and breathe. I couldn’t sit down, but now I can. I had pain for more than a month. I told the doctor and nurses [at another hospital] that I had pain. It took too long to get pain treatment… Here I got it immediately and started feeling well again.”
- Christine L., an 18 year-old woman with Breast Cancer, Nairobi, Kenya.

“I would sleep maybe an hour and a half per night. I could take any number of sleeping pills [without effect]. With morphine, I can relax. This place [the palliative care unit] is heaven-sent…”
- Shruti Sharma, Hyderabad, a breast cancer patient, India

“Cancer is killing us. Pain is killing me because for several days I have been unable to find injectable morphine in any place. Please, Mr. Secretary of Health, do not make us suffer any more.”
- A classified ad placed in El País newspaper in Cali, Colombia, on September 12, 2008, by the mother of a woman with cervical cancer

“I wanted to fall head down and be dead right away so it wouldn’t hurt anymore.”
- Vlad Zhukovsky, a cancer patient from Ukraine, describing a failed suicide attempt

“We have no pethidine, no DF-118 (dihydrocodeine) and no morphine…. We have children here with advanced HIV; some are in severe pain. The pain management for children with advanced HIV is not enough.”
- Nurse, Bondo District Hospital, Kenya

“Doctors are fearful of everything to do with opioids.”
- Oncologist, Jordan

Should it not be?

This was one of the major points discussed during a meeting organized by the International Federation of Health and Human Rights Organisations (IFHHRO) in Amsterdam on 20-21 January 2011, with support from the Open Society Foundations.

Taking part were World leaders from Human Rights Organisations:

• Dr Adriaan van Es – President, IFHHRO
• Professor Cees Flinterman – Member, UN Human Rights Committee
• Diederik Lohman – Human Rights Watch

Dr Kathleen Foley & Dr Liliana De Lima in Amsterdam

and from the Pain and Palliative Care field:

• Dr Kathleen Foley – Memorial Sloane Kettering Institute
• Mary Callaway – Open Society Foundations ["Health Care Without the Pain"]
• Dr Liliana De Lima – IAHPC
• Dr Michael Cousins – IASP

How much of access to pain relief and palliative care can be considered a basic right in the developing world? It would be no use bringing in unrealistic norms which cannot be achieved!

The group unanimously agreed that while the degree of care would be dependent on availability of resources, there would be some minimum standards that any country can and should provide. Like immediate release oral morphine.

The group worked on the draft of a declaration, that should take final shape in the next few weeks.

Please take a careful look at this picture.

Do you see a scar going round the neck?

That scar should be on our collective conscience.

“Ramesh” (not his real name) is just 25. The industrialization of our brave new India drove him from his agricultural land in rural Karnataka and made him a truck driver. When he got pain in his tummy and eventually was given a diagnosis of HIV, that world rejected him. Pain, HIV and the rejection together forced him to try to hang himself. “I did not succeed even in that,” he says ruefully.

How many thousands of desperate men in every state in India are like him, in pain and suffering, rejected by the medical system and the society?

Enormous advances have been made in India in developing a care system for those with HIV, but that system does not yet embrace pain relief or palliative care.

“Ramesh” is one of a small minority of people with HIV and pain who get care and pain relief. He has been taken in by Asha Jyoti, a care centre run by “Samraksha“ in Kushtagi, Northern Karnataka.

Pain management plan

Over the last two months Pallium India has been collaborating with Samraksha to bring in routine pain assessment and symptom control as part of the routine care at Asha Jyoti.

There is a long way to go yet at Asha Jyoti, but a good beginning has been made, and an amazingly sincere team is doing a wonderful job.

But how long will it be before pain relief and palliative care become essential components of HIV care in India?

Watch more video testimonials on Samraksha’s Youtube channel which includes Paramesh’s on Asha Jyoti in Kushtagi.