July 2013 Newsletter

2013 July 31

Please help with Narcotics Law in India

The Honourable Minister of Finance, Government of India will be moving the official Amendments to the NDPS (Amendment) Bill, 2011 in the forthcoming session of Parliament.

We seek your support in helping the bill go through the Lok Sabha without any disruption or delay.

Please visit palliumindia.org/activities/narcoticshelp for details on how you can help.

India’s Health Secretary, Shri Keshav Desiraju visits Pallium India

Keshav Desi Raju Central Health Sec visit to PICrossing flooded and mud-clogged fields, Shri Keshav Desi Raju IAS, Health Secretary, Govt. of India took time to visit bed-ridden patients under home based care of Pallium India on 13 July 2013, during his visit to Kerala. Shr. Rajiv Sadanandan IAS, Health Sec, Govt. of Kerala, Dr. Beena IAS, NRHM Mission Director and Dr. Rajagopal, Chairman, Pallium India and team, accompanied him to get a first hand understanding of field requirements and poor patient’s needs during the visit.  A meeting was later held at Pallium India office on various aspects of the proposed National Palliative Care Strategy and the possibilities of support for palliative care from the Health Care system at State and National levels.

Looking back on the day, we are full with equal measures of gratitude and awe. Here is one man who must be feeling the burden of being responsible for the health of one-sixth of the global population, yet he finds time to travel to the heart of India where people live and suffer. Thank you, Shri Desiraju.


Pallium India – USA at Sevathon 2013

sevathonPallium India – USA participated in Sevathon 2013, a marathon/walkathon organized by the India Community Center, Milpitas, California on Sunday 14 July 2013.

This year’s Sevathon was the largest ever with 3,500 participants who helped raise funds for 57 local nonprofit organizations.There was enthusiasm with the torch ceremony, music and dance, and the tasty warm Upma was the favorite of all!

Pallium India – USA booth attracted many curious visitors eager to learn about the new field of Palliative Care, and showed great interest in our work both locally in the Bay Area and in India.

Inpatient palliative care facility in Hyderabad

prpcsPain Relief and Palliative Care Society, Hyderabad has started a new in-patient/ hospice Centre as an extension of its home care and outreach services. The center is a 25 bedded facility situated in a nice green place but in the heart of the city. This is one big step forward in PRPCS’s efforts towards improving the quality of life of those suffering from chronic pain and life-limiting illnesses. Pallium India is proud to have worked with the Hyderabad team and INCTR to develop a training center from the fledgling palliative care center that existed.

WHO Model List of Essential Medicines

Liliana De Lima from IAHPC writes to inform us that the World Health Organisation has published a revised model list of essential medicines. IAHPC had a major role in preparation of this; congratulations, Liliana and team.

The list for adults can be downloaded  from here and for children from here. The section on palliative care includes 17 medicines. Aspirin, Ibuprofen and Paracetamol feature in the non-opioid analgesic section. Codeine and Oral Morphine are the two opioid analgesics. For children, the included analgesics are Ibuprofen, Paracetamol and Morphine. framework_for_access_to_essential_medicines

By the way, these are also on India’s own list of essential medicines.

In India, lay periodicals keep coming out with lists of “40 Best Hospitals in India”, “50 Best Medical Colleges in India” and so on. Perhaps it is time someone bothered to ask these “best” hospitals and other institutions, how many of them stock the essential “oral morphine” and whether they have any doctor trained in using it effectively!

And, to ensure that the medicine does reach the person who needs it, we might as well remember the framework that WHO recommends in this picture.

Lancet Oncology writes on India’s dextropropoxyphene ban

Dr Dinesh Sharma, writing in Lancet Oncology reports on India’s ban on Dextropropoxyphene. Please see…

India urged to reverse dextropropoxyphene ban

Dinesh C Sharma; Lancet Oncology, Early Online Publication, 5 July 2013

Palliative care experts have urged the Indian Ministry of Health to reverse its decision to ban the manufacture and sale of dextropropoxyphene and formulations that contain it. The ban on the cheapest opioid available for oral use could increase the pain burden of patients with cancer who cannot afford costly alternatives….

Obituary: Professor Geoffrey Warren Hanks

geoffrey hanksThe international palliative care community is saddened to hear of the death of Professor Geoffrey W Hanks, Professor Emeritus of Bristol University, on 27 June 2013. He left his indelible mark in the history of palliative care in the globe in many capacities including the first chair of Palliative Medicine in UK, editing the Oxford Textbook of Palliative Medicine and the journal, “Palliative Medicine”.

His work touched people all over the globe. Our condolences to the bereaved family.

Rest in peace, Baby

BabyMs Baby died very early in the morning on 16 June 2013.

She was one of our patients.

She was also one of our volunteers.

We came across her about 7 years back. She heard about Pallium India on the radio and called us from her home town which is about 100 kilometers away.  We met up soon after. She was in a desperate situation, with severe breathlessness and agonising pain.

We were able to take care of the symptoms, while the oncologists from the Regional Cancer Center kept her cancer under check.

Though suffering from her cancer-related symptoms, chemotherapy-induced heart failure, steroid-induced diabetes and a very difficult family situation, she continued to work as a volunteer, sending patients to us, helping patients to get Government grants and making sure that children of our patients got educational support from Pallium India when necessary.

We thank Sr Veronica, Dr Sr Elsa and their team at Fatima Hospital, Thumpa for their loving care to Baby in her last few days.

We are proud to have known you and worked with you, Baby. Rest in peace.

Life after the Liverpool Care Pathway

By Dr Wendy Pattemore

It is with concern that we watch the demise of the LCP – Liverpool Care Pathway. More than a decade ago it was hailed as the tool to ensure the dignified death of those who were clearly dying. It was to bring clear communication and expectations for the patient and family alike and to prevent futile and invasive procedures being carried out in a persons final precious days or hours.

The risk, as with all protocols slavishly followed, was that the principles and care behind the document would be forgotten in the rush to fill in the paperwork. This seems to have occurred and has led to distressed families and patients alike – and probably distressed carers.

What started as a caring model to raise the quality of care in the dying has been reduced to a ‘tick box procedure’. There is no doubt that when implemented by caring and well educated and resourced staff  the LCP works well, allowing a “peaceful and dignified death”.

So what now? The LCP has been splattered with mud that will not come off. People have been hurt and disillusioned. I do not believe that the LCP in its current form will survive. But does that mean that all it stood for and attempted to achieve is to be thrown away as well?
Certainly not! The thinking use of the principles embodied in the LCP must be continued. Some guidelines for the Care of the Dying need to be in place. Certainly there needs to be the educational support and caring investment in the guidelines that can only come from people that truly believe in the principals of a ‘good death’.

Every ‘protocol’ that is produced runs these risks. This is one reason that I prefer “guidelines” rather than “protocols”. Guidelines can and should be adapted to the individual situation. The very name suggests that it should be used in a thinking manner.

The work done by the proponents of the LCP remains sound. We now need to take the knowledge that has come – both the good and bad outcomes of using the LCP – and create a guideline for our own situations. One that takes into account the cultural needs of the people it serves, one that understands the restrictions on carers and medical systems that it seeks to aid.

So that we may be able to facilitate that last experience of life – dying – in dignity and comfort.

Do you know what real pain is like? And what it means to have relief?

For most of us, pain is what we have experienced some time in the past – a toothache, your post-operative pain or some such. We cannot even begin to imagine how severe it can become when one suffers from a cruel unrelenting disease.

Please click here to read Mr Sarmah’s pain experience from Guahati, Assam.

Thank you Dr Dinesh Chandra Goswami, for what you do for people in pain, and also for bringing this article to our attention.

Thank you, Ipswich City Rotary

rotaryHelping hands from across the seas support our patients! Ipswich City Rotary in the far away Queensland, Australia has been offering support to Pallium India for some years now, thanks to the continued advocacy by our friend, Dr Judith McEniery. In this picture you see Judith receiving the donation from the outgoing president of Ipswich City Rotary, Mr Rowarn Luder.

A few years back when Judith got married to Kevin, the guests were asked to donate to Pallium India instead of giving presents. Judith is doing the same thing when she has her next birthday in November.

Thank you Judith. We feel strengthened by your support.

Well done, Rajeswary Foundation

Rajeswary foundation, one of Pallium India’s close associates in Trivandrum district, really shows us how the community can get involved in palliative care.  They got together hundreds of people who all now have the privilege of supporting someone whose family is struggling from the aftermath of disease and expensive treatment.

Seven families of Pallium India’s patients received support for vocational rehabilitation from Rajeswary foundation, when it got together on the 24th of July.

Well done, Sri Vijayakumaran Nair, the founder, and thank you.

Lesson 1: Help another child:

clubfm“Lesson 1” is a program by “Club FM”, a popular radio station in Trivandrum.

They have been requesting parents of school children to buy some extra materials when they buy books, school bags etc for their own kids and to donate them to help another child.

Today, we had the pleasant experience of receiving Mr. Vinod, (Manager- Radio Solutions) and Mr. Prasoon (Producer) from Club FM at Pallium India office. They came with a large bundle – notebooks, pens, pencils, pencil box, alphabet blocks, pencil sharpeners, erasers and so on for donation to Pallium India’s “Kuttikkoottam”- educational support program for children of families afflicted by prolonged life-limiting diseases.

Thank you Club FM.

Hearty congratulations, Zippy.

Zipporah Ali

Dr Zipporah Ali (Zippy to her friends), the palliative care pioneer from Kenya has been awarded a honorary doctorate from Oxford Brookes University! Please read more at e-hospice.

Hearty congratulations, Zippy. Proud to be associated with you.

Because we love Nelson Mandela

Nelson MandelaNelson Mandela seems to be close to death.  He has given us all so much; we all wish him well. Would you wish or pray that he live longer, even if that life seems to be one of suffering?  Or would you rather tell him, “Thank you for everything, Nelson. You are a truly great human being. We love you. We release you. Go in peace.”

Please take five minutes to read what Monica Williams-Murphy has to say in “Nelson Mandela is Dying: Three Lessons for You and Your Family by Dr. Monica Williams-Murphy”. It is about Nelson, you and I and our dear ones.

Thank you Monica for reminding us.

PARTING SHOT

The empathy-discrimination connection

tribal personWould you think that the Adivasi (tribal person) who is used to a lot of hardships in his life would require less pain medication than you, the person from the sophisticated society? Please think, and find an answer before you read the rest.
If you think yes, do you think your answer would influence your decision in giving pain medication to the two people?
The article “I dont feel your pain” argues that there is a connection between empathy and racial discrimination. Though the article seems to be about black and white races, it could well be applicable to our everyday practice in India, though we may be neither quite black nor quite white.

It certainly merits reflection. Our upbringing and our bias may influence our decisions and our behavior when we treat someone from another stratus of society with which we are not familiar. We may, with respect, say of the illiterate tribal person, “They are so hardy”, not quite recognizing that we have inadvertently referred to him or her as “they” thus branding the individual with our bias. And the result: the person gets less pain medicine. Or we may see the worried face of the member of the Royal family and say to ourselves, “They are such crybabies”.
Once that happens, we may still be compassionate, but empathy would have faded away.

Why Not Donate? Every little bit helps.

  • $ 5 will pay for Medicines for a week
  • $ 20 = Medicines for a month
  • $ 80 = Schooling support for one child/year
  • $ 500 = Vocational rehabilitation for a family

Visit palliumindia.org/donate

Don’t forget to sign the Morphine Manifesto!

 

One Response
  1. Dr.Chhandashree Bhuyan permalink
    August 24, 2013

    I had not known about this newsletter until my cousin brother B.C.Sarmah after his attack of Buerger’s disease left an article relating his agonizing pain to his present wellness.His condition was well known to our family and it gives us a real pleasure that he got an opportunity to share his experiences globally.In addition there are so many heart rendering articles which were very informative and touching!

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