Pallium India Newsletter: January 2012

  • From: Pallium India Newsletter <info@xxxxxxxxxxxxxxxx>
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  • Date: Wed, 25 Jan 2012 21:10:33 +0000

Pallium India
Care Beyond Cure





         

DEAR FRIENDS,

IS THERE A CASTE SYSTEM AMONG DISEASES?

         [http://www.rarediseases.org/] 

        Power groups achieve a lot by advocacy and by collective bargaining. 
There are any number of organizations fighting for people with cancer or with 
HIV. Government programs in many countries support their treatment. 

        But if you have the bad luck to have an uncommon disease? Like  Rahmath 
[http://palliumindia.org/2011/09/rahmath-lives-on-in-memories-and-more/]  with 
systemic sclerosis, whom we blogged about a while back, no one wants you! 

        The USA’s National Institutes of Health (NIH) [http://www.nih.gov/]  
lists more than 6000 such uncommon diseases, and there are millions of people 
with such diseases. 

         [http://www.ekrfoundation.org/about] 

        At least that used to be the case… We are very very happy indeed to 
hear about the   National Organization for Rare Diseases (NORD) 
[http://www.rarediseases.org/]  in USA. Pallium India’s friend Dianne Gray, who 
lost her son to such a disease, is involved with this organization. A report 
from  thesurvivorsclub.org 
[http://www.thesurvivorsclub.org/family/support/rare-disorder-inspires-dianne-gray-to-become-involved-and-help-other-families_155]
 , below. 

MAY NORD LEAD TO GLOBAL ACTION!

" 

RARE DISORDER INSPIRES DIANNE GRAY TO BECOME INVOLVED AND HELP OTHER FAMILIES 
[HTTP://WWW.THESURVIVORSCLUB.ORG/FAMILY/SUPPORT/RARE-DISORDER-INSPIRES-DIANNE-GRAY-TO-BECOME-INVOLVED-AND-HELP-OTHER-FAMILIES_155]
 

         
[http://abcnews.go.com/Health/WellnessNews/rare-disease-rare/story?id=9952231] 

        Dianne Gray’ son Austin was 4 years old when he lost his vision and 
started falling. He was subsequently diagnosed with neurodegenerative brain 
iron accumulation, a rare disease which eventually killed him at the age of 14. 
However, the family’s often frustrating struggle to provide him with comfort 
and relief has spurred Gray to help other families dealing with un-researched 
conditions, according to ABC News 
[http://abcnews.go.com/Health/WellnessNews/rare-disease-rare/story?id=9952231] 
. 

        Recalling the obstacles she and Austin faced in order to obtain the 
right diagnosis, treatment and support, Gray told the news provider about the 
helplessness she felt when doctors were not able to treat her son, or even 
alleviate his pain. 

        That is what inspired her to become involved with the National 
Organization for Rare Diseases (NORD) [http://www.rarediseases.org/] , which 
sponsored the second annual National Rare Disease Day last Sunday. 

        NORD serves as a liaison for researchers and families coping with rare 
diseases, offering patient assistance programs and networking opportunities. It 
also collects donations as funding is among the most important obstacles to 
fighting these types of disorders. 

        According to the National Institutes of Health, there are more than 
6,000 rare diseases affecting approximately 25 million Americans." 
        * READ DIANNE’S INTERVIEW WITH ABC NEWS HERE… 
[HTTP://ABCNEWS.GO.COM/HEALTH/WELLNESSNEWS/RARE-DISEASE-RARE/STORY?ID=9952231] 

HOW MANY MILLION STORIES OF SUFFERING WOULD THAT WORK OUT TO? 

IT IS SAD TO SEE THAT THERE IS OFTEN DISCRIMINATION IN THE NAME OF A DIAGNOSIS 
EVEN IN PALLIATIVE CARE!

        - 

TIPS CLINICAL SERVICE IS MOVING! 
[HTTP://PALLIUMINDIA.ORG/2012/01/TIPS-CLINICAL-SERVICE-IS-MOVING/] 

         [http://www.suthospital.com/php/showHospital.php?hid=3&linkid=3] The 
clinical services of  Trivandrum Institute of Palliative Sciences (TIPS) 
[http://tipsindia.org] , the outpatient and inpatient clinics and headquarters 
of the home visit program, have just moved from S.U.T. Specialty Hospital 
(Pattom) to: 
        * 

S.U.T ROYAL HOSPITAL, KOCHULLOOR, TRIVANDRUM, KERALA 695011 
[HTTP://WWW.SUTHOSPITAL.COM/PHP/SHOWHOSPITAL.PHP?HID=3&LINKID=3] 

        * 

PHONE: +91 9387296889

        The move was unavoidable. Any inconvenience caused to our patients, 
families and visitors is sincerely regretted. 

        Our office and training center continue to be in the old location 
namely, S-10, Vrindavan Gardens, Pattom, Trivandrum 695004. 

        - 

NEW CEO FOR PALLIUM INDIA 
[HTTP://PALLIUMINDIA.ORG/2012/01/NEW-CEO-FOR-PALLIUM-INDIA/] 

        We are glad to report that a volunteer-trustee 
[http://palliumindia.org/about/team/] of Pallium India, V JAYAPRAKASAN has 
taken over as the Chief Executive Officer of Pallium India. 

        Dr V Jayaprakasan (right) is a retired Professor and Dean of Veterinary 
Sciences of the Kerala Agricultural University. 

        He came across palliative care when his dear wife Sushama got cancer of 
the pancreas.  She is no more now, and his work in Palliative Care is the Taj 
Mahal that Jayaprakasan (JP as he is fondly called by the team) has built for 
the departed Sushama. 

WELCOME, JP, AND THANK YOU FOR ALL THAT YOU ARE DOING FOR PEOPLE IN PAIN AND 
SUFFERING.

        - 

PALLIATIVE CARE COMES TO AGARTALA, TRIPURA STATE 
[HTTP://PALLIUMINDIA.ORG/2011/12/PALLIATIVE-CARE-COMES-TO-AGARTALA-TRIPURA-STATE/]
 

         

WE BRING YOU GOOD NEWS!

        PALLIATIVE CARE REACHES YET ANOTHER VIRGIN STATE IN INDIA. 

        Under the dynamic leadership of Dr Gautam Majumdar 
[http://tripura.nic.in/portal/aboutTripura/health%20care.aspx] in Agartala in 
the state of Tripura, the Regional Cancer Center 
[http://www.mediavoicemag.com/life-style/wellness/4583-northeast-the-epicenter-of-cancer.html]
 now has palliative care. 

        It is one of the eight palliative care centers 
[http://palliumindia.org/clinics/] that Pallium India has had the privilege of 
catalyzing in the last few years in eight different North and North-East Indian 
states. 

        Agartala is one of the projects funded jointly by Savitri Waney Trust 
[http://www.savitri.org.uk/] , Farida and Yusuf Hamied Foundation and Bruce 
Davis Trust 
[http://palliumindia.org/2011/11/bruce-davis-training-centre-inaugurated/] . 

        A doctor-nurse team, Ms Rita Saha (nurse) and Dr Batan Janapathy 
underwent Six Weeks’ Certificate Course [http://palliumindia.org/courses/] at 
TIPS, Trivandrum. Within one month of finishing the training program, they have 
already started home visits! 

CONGRATULATIONS, DR MAJUMDAR, DR JANAPTHY AND MS SAHA.

        - 

OUT OF POCKET (OOP) HEALTH CARE SPENDING IN INDIA 
[HTTP://PALLIUMINDIA.ORG/2011/12/OUT-OF-POCKET-OOP-HEALTH-CARE-SPENDING-IN-INDIA/]
 

         [http://www.flickr.com/photos/83198397@N00/3081937177/] In these days 
of discussion about improving access to pain relief and palliative care in 
India, and in all developing countries, it is important to understand the 
background reality that most health care costs need to be out-of-pocket (OOP):  
THERE IS NO SOCIAL SECURITY SYSTEM OR INSURANCE SYSTEM PAYING FOR HEALTH CARE. 

        In a Times of India Special Report, ON LIFE SUPPORT 
[HTTP://TIMESOFINDIA.INDIATIMES.COM/HOME/SUNDAY-TOI/SPECIAL-REPORT/ON-LIFE-SUPPORT/ARTICLESHOW/11152038.CMS]
 , Subodh Varma brings up some important facts about out of pocket (OOP) 
expenses: "

        _Economic theory would dictate that people would not buy goods or 
services that are too costly for them._ 

        _This may apply to chocolates and deodorants but healthcare cannot be 
dealt with in this way._ 

        _When somebody falls sick, the family will be forced to seek medical 
attention even if it means destroying their meagre budget._" 

        along with some jaw-dropping statistics. In India: 
        * personal expenditure on health care is 75%, vs. 12-13% in UK & USA. 
        * public expenditure on health care stagnated at around 1% of GDP. 
        * catastrophic OOP spending pushed 39–million people into poverty. 
        * 20% of sicknesses go untreated due to lack of money to see a doctor. 
        * there are 5,583 persons per rural hospital bed (Ministry of Health’s  
Central Bureau of Health Intelligence [http://cbhidghs.nic.in/] (CBHI)) 

WHAT THE ARTICLE DOES NOT SAY IS HOW INAPPROPRIATELY MUCH OF THE MONEY IS 
SPENT, AND HOW PALLIATIVE CARE COULD ENSURE THAT THE MEAGRE RESOURCES ARE SPENT 
APPROPRIATELY AND THAT SUFFERING IS MITIGATED AT LOW COST!

READ THE FULL ARTICLE: ON LIFE SUPPORT 
[HTTP://TIMESOFINDIA.INDIATIMES.COM/HOME/SUNDAY-TOI/SPECIAL-REPORT/ON-LIFE-SUPPORT/ARTICLESHOW/11152038.CMS]
 

        Varma also quotes from the   International Labour Organization 
[http://www.ilo.org/global/publications/books/WCMS_142209/lang--en/index.htm] 
‘s (ILO)  World Social Security Report 2010/11 
[http://www.ilo.org/public/english/protection/secsoc/downloads/policy/wssr.pdf] 

        - 

AVOIDING INAPPROPRIATE HEALTH CARE WITH ADVANCE DIRECTIVES 
[HTTP://PALLIUMINDIA.ORG/2011/12/AVOIDING-INAPPROPRIATE-HEALTH-CARE-WITH-ADVANCE-DIRECTIVES/]
 

         
[http://www.latimes.com/news/columnists/la-me-lopez-howyoudie-20111212,0,6194996.column]
 An article in the Los Angeles Times, “ HAVING TO THINK ABOUT THE UNTHINKABLE 
[HTTP://WWW.LATIMES.COM/NEWS/COLUMNISTS/LA-ME-LOPEZ-HOWYOUDIE-20111212,0,6194996.COLUMN]
 “, discussing advance healthcare directives assumes greater significance since 
we recently blogged about “ inappropriate care 
[http://palliumindia.org/2011/12/out-of-pocket-oop-health-care-spending-in-india/]
 “. 

        An advance healthcare directive allows someone to: _“authorise a loved 
one or someone else to have power of attorney — or serve as your agent — to 
make healthcare decisions for you if you’re unable.”_ 

        The article begins with a quote from Dr. Neil S. Wenger, Director 
of UCLA’s Health System Ethics Center 
[http://www.uclahealth.org/site.cfm?id=124] : "

        _“I could show you case after case, I could bet you million-to-1 odds 
these patients would not want to be in this situation.” _" 

        He was talking about patients in critical condition who are _“attached 
to machines, being kept alive”_ in hospitals, many of them suffering. 

        The answer, the author goes on to say, lies in people leaving advance 
directives. 

IT IS NOT TOO SOON FOR US TO START DOING IT IN INDIA!

        _Thanks to Ms Sunshine Mugrabi for bringing this to our attention._ 

        LA Times columnist, Steve Lopez, has many more interesting columns in 
his “ Matters of life & death 
[http://www.latimes.com/news/columnists/la-columnist-slopez,0,7768178.columnist]
 ” series. 

        - 

DECEMBER 2011 & JANUARY 2012 ISSUES OF SAHAYATRA MALAYALAM NEWSLETTER 
[HTTP://PALLIUMINDIA.ORG/NEWSLETTER/SAHAYATRA/] 

         [http://palliumindia.org/newsletter/sahayatra] 

        We are happy to announce that the DECEMBER 2011 & JANUARY 2012 issues 
of SAHAYATRA [HTTP://PALLIUMINDIA.ORG/NEWSLETTER/SAHAYATRA/] , our monthly 
Malayalam newsletter, is now available for DOWNLOAD HERE… 
[http://palliumindia.org/newsletter/sahayatra/] 

        - 

ANOTHER AWARD FOR PALLIUM INDIA – THANK YOU SENIOR CITIZENS! 
[HTTP://PALLIUMINDIA.ORG/2012/01/ANOTHER-AWARD-FOR-PALLIUM-INDIA-THANK-YOU-SENIOR-CITIZENS/]
 

         

        WHAT A DIVINE WAY TO CELEBRATE CHRISTMAS! 

        The Senior Citizens Association of Thiruvananthapuram celebrated 
Christmas by giving – to “ Buds [http://budsschool.org/] “, a school at 
Venganoor for mentally challenged children, to a home for destitute women and 
so on. 

        They gave their annual PMCMM AWARD to Pallium India – a Certificate of 
Honour and a cash award. 

        SENIOR CITIZENS ASSOCIATION, ALL OF US AT PALLIUM INDIA ARE IMMENSELY 
GRATEFUL TO YOU FOR THIS RECOGNITION AND ENCOURAGEMENT. 

THANK YOU VERY MUCH, AND A VERY HAPPY NEW YEAR TO ALL OF YOU!

        - 

WHAT DO THE ELDERLY SUFFER FROM? 
[HTTP://PALLIUMINDIA.ORG/2012/01/WHAT-DO-THE-ELDERLY-SUFFER-FROM/] 

        Dr Supten Sarbadhikari invites your attention to a study conducted in 
Tamil Nadu and Kerala about the problems of the elderly. Reported in The Hindu, 
New Delhi edition: " 

[HTTP://WWW.THEHINDU.COM/TODAYS-PAPER/TP-NATIONAL/ARTICLE2756114.ECE] JOINT 
PAIN AILS THE ELDERLY IN TAMIL NADU; HYPERTENSION IN KERALA 
[HTTP://WWW.THEHINDU.COM/TODAYS-PAPER/TP-NATIONAL/ARTICLE2756114.ECE#.TV0Z32A5OSA.EMAIL]
 

        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?

        - 

THE HINDU: NEED FOR PALLIATIVE CARE STRESSED 
[HTTP://PALLIUMINDIA.ORG/2012/01/THE-HINDU-NEED-FOR-PALLIATIVE-CARE-STRESSED/] 

        From the Hyderabad, Andhra Pradesh edition of The Hindu, 6 January 
2012: " 

NEED FOR PALLIATIVE CARE STRESSED 
[HTTP://WWW.THEHINDU.COM/TODAYS-PAPER/TP-NATIONAL/TP-ANDHRAPRADESH/ARTICLE2779607.ECE]
 

        _ROUGHLY, THERE ARE TWO LAKH CANCER PATIENTS NEEDING PALLIATIVE CARE IN 
STATE_ 

        There are countless number of patients, suffering from incurable 
ailments, in the capital and elsewhere who endure pain in silence. Such 
patients and their families are not aware of the applications of palliative 
care in controlling the pain and in the process lead a quality life, until it 
lasts. 

        Families also struggle to accept the fact that the terminally ill 
patients do not need a ‘cure’ but instead need palliative care to heal the 
pain. “There is a need for specialised palliative care departments in 
hospitals. It is not just cancer, patients due to other ailments like HIV, 
muscular dystrophy, dementia, end-stage and heart problems need pain relief. We 
are unnecessarily allowing them to endure pain in silence,” says executive 
member, Pain Relief and Palliative Care Society (PRPCS), Dr. Rohina R. Gupta.To 
drive home the virtues of palliative care and also to highlight the plight of 
terminally ill patients, the society is screening a documentary ‘Life Before 
Death’. The screening of the documentary will coincide with World Cancer Day, 
which is in the first week of February. 

        Palliative care is aimed at providing the patients with pain and 
symptom relief, spiritual and social support till the end of life. “Roughly, 
there are two lakh cancer patients needing palliative care in the State. This 
is in addition to patients suffering from other incurable diseases. Of them, 
only one per cent have access to morphine, which is a pain reliever and the 
rest just suffer in silence,” Dr. Rohina said. 

        Like many cancer hospitals, community cancer centres for HIV positive 
persons, secondary and primary health centres do not have palliative care 
departments. Such facilities do not have the necessary medications, including 
morphine, or trained health care workers. 

        “There is a need for develop State and national-level palliative care 
policies and strategies. Community-based and institution-based palliative cure 
is the need of the hour,” Dr. Rohina pointed out.The movie ‘Life Before Death’ 
is a multi-award winning documentary series that showcases the journey of 
health care professionals in 11 countries and their attempts to help terminal 
patients who desperately need palliative care. The documentary ‘Life Before 
Death’ comprises a feature film, 50 short films and a television 
documentary.Persons interested in contributing to palliative care can contact: 
94916-66688" 

        - 

WHAT SHOULD MEDICINE DO WHEN IT CAN’T SAVE YOUR LIFE? 
[HTTP://PALLIUMINDIA.ORG/2012/01/WHAT-SHOULD-MEDICINE-DO-WHEN-IT-CANT-SAVE-YOUR-LIFE/]
 

"

         
[http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all]
 “Our medical system is excellent at trying to stave off death with 
eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day 
intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death 
comes, and no one is good at knowing when to stop”" 

        Says Atul Gawande in the New Yorker of August 2, 2010 
[http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all]
 . 

        But do not think that this is one of those articles that blindly 
advises against aggressive curative treatment. It is not. 

        Atul Gawande argues forcibly for a balance. And for the evidence in 
favor of combining life-prolonging treatment with palliative care. "

        “A two-year study of this “concurrent care” program found that enrolled 
patients were much more likely to use hospice: the figure leaped from 
twenty-six per cent to seventy per cent. 

        That was no surprise, since they weren’t forced to give up anything. 

        The surprising result was that they did give up things. They visited 
the emergency room almost half as often as the control patients did. Their use 
of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell 
by almost a quarter.”" 

        Read the full article here 
[http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all]
 and Dr Michael Minton’s comments 
[http://palliumindia.org/2010/08/comment-what-should-medicine-do/] in a 
previous blog post. 

        - 

TOP 5 REGRETS OF THE DYING 
[HTTP://PALLIUMINDIA.ORG/2012/01/TOP-5-REGRETS-OF-THE-DYING/] 

        Blogger Kelly Oxford 
[http://kellyoxford.tumblr.com/post/14958669440/nurse-reveals-top-5-regrets-of-the-dying]
 quotes a nurse who wrote on the “ Arise India forum 
[http://www.ariseindiaforum.org/nurse-reveals-the-top-5-regrets-people-make-on-their-deathbed/]
 “: "

        “For many years I worked in palliative care. My patients were those who 
had gone home to die. 

        Some incredibly special times were shared. I was with them for the last 
three to twelve weeks of their lives. People grow a lot when they are faced 
with their own mortality. 

        I learnt never to underestimate someone’s capacity for growth. Some 
changes were phenomenal. Each experienced a variety of emotions, as expected, 
denial, fear, anger, remorse, more denial and eventually acceptance. 

        Every single patient found their peace before they departed though, 
every one of them. 

        When questioned about any regrets they had or anything they would do 
differently, common themes surfaced again and again. 

        Here are the most common five: 

        * I wish I’d had the courage to live a life true to myself, not the 
life others expected of me.
This was the most common regret of all. When people realise that their life is 
almost over and look back clearly on it, it is easy to see how many dreams have 
gone unfulfilled. Most people had not honoured even a half of their dreams and 
had to die knowing that it was due to choices they had made, or not made.It is 
very important to try and honour at least some of your dreams along the way. 
From the moment that you lose your health, it is too late. Health brings a 
freedom very few realise, until they no longer have it. 
        * I wish I didn’t work so hard.
This came from every male patient that I nursed. They missed their children’s 
youth and their partner’s companionship. Women also spoke of this regret. But 
as most were from an older generation, many of the female patients had not been 
breadwinners. All of the men I nursed deeply regretted spending so much of 
their lives on the treadmill of a work existence.By simplifying your lifestyle 
and making conscious choices along the way, it is possible to not need the 
income that you think you do. And by creating more space in your life, you 
become happier and more open to new opportunities, ones more suited to your new 
lifestyle. 
        * I wish I’d had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a 
result, they settled for a mediocre existence and never became who they were 
truly capable of becoming. Many developed illnesses relating to the bitterness 
and resentment they carried as a result.We cannot control the reactions of 
others. However, although people may initially react when you change the way 
you are by speaking honestly, in the end it raises the relationship to a whole 
new and healthier level. Either that or it releases the unhealthy relationship 
from your life. Either way, you win. 
        * I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their 
dying weeks and it was not always possible to track them down. Many had become 
so caught up in their own lives that they had let golden friendships slip by 
over the years. There were many deep regrets about not giving friendships the 
time and effort that they deserved. Everyone misses their friends when they are 
dying.It is common for anyone in a busy lifestyle to let friendships slip. But 
when you are faced with your approaching death, the physical details of life 
fall away. People do want to get their financial affairs in order if possible. 
But it is not money or status that holds the true importance for them. They 
want to get things in order more for the benefit of those they love. Usually 
though, they are too ill and weary to ever manage this task. It is all comes 
down to love and relationships in the end. That is all that remains in the 
final weeks, love and relationships. 

        * I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that 
happiness is a choice. They had stayed stuck in old patterns and habits. The 
so-called ‘comfort’ of familiarity overflowed into their emotions, as well as 
their physical lives. Fear of change had them pretending to others, and to 
their selves, that they were content. When deep within, they longed to laugh 
properly and have silliness in their life again.When you are on your deathbed, 
what others think of you is a long way from your mind. How wonderful to be able 
to let go and smile again, long before you are dying. 

        When you are on your deathbed, what others think of you is a long way 
from your mind. How wonderful to be able to let go and smile again, long before 
you are dying”. 

         " 

        - 

MORE GOOD NEWS FROM GUATEMALA! 
[HTTP://PALLIUMINDIA.ORG/2012/01/MORE-GOOD-NEWS-FROM-GUATEMALA/] 

        Dr Eva Duarte MD, Chief of Palliative Medicine and Symptom Control 
Department at National Cancer Institute of Guatemala 
[http://www.ligacancerguate.org/] , writes to share a piece of good news for 
all those interested in palliative care in developing countries: "

        The Guatemalan Government published yesterday in the official newspaper 
Diario de Centroamerica [http://www.dca.gob.gt/]  the AGREEMENT OF CONSTITUTION 
OF THE NATIONAL COMMISSION OF PALLIATIVE CARE OF GUATEMALA, with a wide 
representative body of institutions. 

        For us, it is definitely the best gift to start the year! 

        Our Government will change on January 14th, and we are so glad that 
they decided establish this Ministry Agreement so we can continue to work with 
the new team." 

        - 

LIFE BEFORE DEATH #NEWS 
[HTTP://PALLIUMINDIA.ORG/2012/01/LIFE-BEFORE-DEATH-NEWS/] 

         
[http://palliumindia.org/2011/10/life-before-death-wins-accolade-award/] 

        Have you missed normal weekly short films from the “LIFE BEFORE DEATH” 
series over Christmas and New Year? 

        Don’t worry, you haven’t missed a thing! 

        The team behind the series have paused the release schedule to focus on 
the upcoming premiere of the “LIFE BEFORE DEATH” feature film’s official 
release on 01 February 2012. 

        Pallium India hears excellent reports about it from those who saw a 
preview at the Leadership Development Initiative at San Diego. 

        The man behind this advocacy initiative, Mike HIll, requests you to 
consider 
        * HOSTING A SCREENING 
[HTTP://LIFEBEFOREDEATH.COM/MOVIE/HOST-A-SCREENING.SHTML]  – over 100 
screenings in over 30 countries have now been confirmed. Pallium India will be 
screening the film on  Feb 3 
[http://palliumindia.org/2011/12/reminder-organize-your-own-life-before-death-screening/]
  in Trivandrum. 
        * Issuing a Press Release linking your activities with the release of 
the film ( templates available 
[http://lifebeforedeath.com/movie/host-a-screening.shtml] ) 
        * Encouraging others to host or attend a screening 
        * Providing him with Calls-To-Action that can be included on the 
project website that allow individuals to Do Something about the issue (ie 
Donate, Volunteer, Advocate etc) 
        * Posting the Trailer to your website or Facebook page with an 
announcement about the upcoming release 

        As a pointer, please see the report in The Hindu: Need for palliative 
care stressed 
[http://www.thehindu.com/todays-paper/tp-national/tp-andhrapradesh/article2779607.ece]
 

         If you’ve missed previous episodes, catch up on the LIFE Before Death 
website… [http://www.lifebeforedeath.com/movie/short-films.shtml] 

        - 

“PALLIATIVE”: WHY SO TABOO? 
[HTTP://PALLIUMINDIA.ORG/2012/01/PALLIATIVE-WHY-SO-TABOO/] 

        The word “palliative” seems to be taboo all over the world! For a long 
time, no one knew what the word “palliative” meant. When finally people start 
hearing about it, yet it is so misunderstood. 

        Read the following by Dr Kohar Jones 
[http://www.drsforamerica.org/authors/dr-kohar-jones] … The man was a fighter, 
but that does not mean that he needed to be persuaded to fight against a 
windmill! His doctor realises with some regret that he should have encouraged 
the patient to take on a worthwhile fight: " 

THE POSITIVE EFFECTS OF PALLIATIVE CARE ON QUALITY OF LIFE

         [http://www.flickr.com/photos/81335564@N00/1633860621/] “I’ve been a 
fighter all my life,” said my new patient, a middle aged man with thinning 
hair, a worried wife, and a dismal prognosis. He had worked all his life as a 
plumber with no health insurance. When he was healthy, it was okay. But now he 
was sick. 

        I was meeting him for the first time in the community health center 
where I work as a family physician, tending to all the health needs of a 
community, from birth to grave. One week earlier, he had gone to the local 
community hospital when he could no longer swallow. The emergency room doctors 
admitted him for a complete workup. Inside the hospital they found a tumor in 
his esophagus, and two in his lungs, one in each lobe of his liver, as well as 
in his adrenal glands. 

        Metastatic cancer, spread throughout his body. 

        The private oncologist who covered the for-profit community hospital 
where he had received his diagnosis would not see a man in his office who had 
no insurance. The oncologist directed the patient to me, expecting me to make 
urgent appointments with the oncologists at Cook County Hospital, Chicago’s 
county-financed public safety net system for the uninsured. They would provide 
top quality care, but it takes months for appointments to make it through the 
referral system, even when they are marked urgent. 

        “The oncologist told me you would help me,” he said. 
        * READ THE REST OF THIS PIECE AT KEVINMD.COM… 
[HTTP://WWW.KEVINMD.COM/BLOG/2011/12/POSITIVE-EFFECTS-PALLIATIVE-CARE-QUALITY-LIFE.HTML]
 " 

         

        - 

SAD STATE OF PALLIATIVE CARE IN MAHARASHTRA 
[HTTP://PALLIUMINDIA.ORG/2012/01/SAD-STATE-OF-PALLIATIVE-CARE-IN-MAHARASHTRA/] 

         [http://www.mid-day.com/news/2012/jan/050112-Till-the-end.htm] An 
article in “Mid-Day” 
[http://www.mid-day.com/news/2012/jan/050112-Till-the-end.htm ] highlights the 
need for improved palliative care facilities in the state of Maharashtra and 
brings to attention the contrast between Kerala which has more than 170 
palliative centers and Maharashtra which has only THREE 
[HTTP://PALLIUMINDIA.ORG/CLINICS/MAHARASHTRA/] ! 

        The article, “Till the end…” 
[http://www.mid-day.com/news/2012/jan/050112-Till-the-end.htm] , describes the 
efforts that the palliative care leaders, Dr M.A Muckaden, Dr Manjhiri Dighe 
and others are making to bring in a palliative care policy in the state and 
also to improve palliative care education to professionals. 

        The Maharashtra Health Minister,  Suresh Shetty 
[http://en.wikipedia.org/wiki/Suresh_Shetty] , responds: "

        _ [http://www.mid-day.com/news/2012/jan/050112-Till-the-end.htm] The 
decision of a policy has to be taken by the Medical Education department. _ 

        _As far as making palliative care a compulsory part of the medical 
curriculum is concerned, we have forwarded it to the Directorate of Medical 
Education in Nashik. _ 

        _The decision has to come from there._" 

A LOT MORE ADVOCACY IS NEEDED, OBVIOUSLY!

        - 

UNION CABINET APPROVES NATIONAL POLICY ON NARCOTIC DRUGS & PSYCHOTROPIC 
SUBSTANCES (NDPS) 
[HTTP://PALLIUMINDIA.ORG/2012/01/UNION-CABINET-APPROVES-NATIONAL-POLICY-ON-NARCOTIC-DRUGS-PSYCHOTROPIC-SUBSTANCES-NDPS/]
 

        The Union Cabinet [http://en.wikipedia.org/wiki/Cabinet_of_India] on 
Thursday approved the NATIONAL POLICY ON NARCOTIC DRUGS AND PSYCHOTROPIC 
SUBSTANCES (NDPS) [http://pib.nic.in/newsite/erelease.aspx?relid=79513] drafted 
by the Ministry of Finance, Department of Revenue. 

WE ARE GLAD TO NOTE THAT THE POLICY SPECIFICALLY MENTIONS THE NEED FOR MAKING 
OPIOIDS AVAILABLE FOR PALLIATIVE CARE.

        It is also learnt that the cabinet has also decided to go ahead with 
privatization of manufacture of poppy concentrate from poppy straw 
[http://en.wikipedia.org/wiki/Poppy_straw] . This has so far been the monopoly 
of the Government. " 

CABINET APPROVES NATIONAL POLICY ON NARCOTIC DRUGS AND PSYCHOTROPIC SUBSTANCES 
[HTTP://WWW.NEWSTRACKINDIA.COM/NEWSDETAILS/258952] 

        New Delhi, Jan 12 (ANI): The Union Cabinet on Thursday approved the 
National Policy on Narcotic Drugs and Psychotropic Substances (NDPS) drafted by 
the Ministry of Finance, Department of Revenue, in consultation with the 
concerned Ministries and Agencies of Government of India and the State 
Governments. 

        The salient features of the policy are as follows: 

        * The policy recommends production of Concentrate of Poppy Straw (CPS) 
in India by a company or body corporate. This would enable India to retain its 
status of a traditional supplier of Opiate Raw Material (ORM) to the rest of 
world, while remaining competitive. 
        * The consumption of poppy straw by addicts will be gradually reduced 
and finally stopped in a time frame decided by the States. 
        * On the illicit cultivation of poppy and cannabis, the policy 
emphasizes use of satellite imageries for detection of illicit crop and its 
subsequent eradication and development of alternate means of livelihood in 
respect of cultivators in pockets of traditional illicit cultivation. 
        * The private sector may be allowed production of alkaloids from opium. 
At present alkaloids from opium are produced only in Government Opium and 
Alkaloid Factories (GOAFs). 
        * Non-intrusive methods of regulating the manufacture, trade and use of 
such psychotropic substances will be introduced, 
        * Emphasis will be laid on adequate access to morphine and other 
opioids necessary for palliative care, a strategy to address street peddlers of 
drugs, periodic surveys of drug abuse to gauge the extent, pattern and nature 
of drug abuse in the country, recognition of de-addiction centers. 
        * There will be a time bound plan of action, detailing the steps to be 
taken by different Ministries/ Departments/ agencies, in response to the 
recommendations of the International Narcotics Control Board. 

        The policy attempts to curb the menace of drug abuse and contains 
provisions for treatment, rehabilitation and social re-integration of victims 
of drug abuse. Implementation of the provisions of the policy will lead to 
reduction of crime, improvement in public health and uplifting of the social 
milieu. 

        The NDPS Policy will serve as a guide to various Ministries and 
organizations and re-assert India’s commitment to combat the drug menace in a 
holistic manner. 

        There are four broad aspects of narcotic drugs and psychotropic 
substances: 
        * administration of the NDPS Act and Rules framed there under 
        * legal production, manufacturing, trade and use of narcotic drugs and 
psychotropic substances for medical and scientific uses 
        * drug (Illicit) supply reduction 
        * drug (Illicit) demand reduction " 

        - 

RANBAXY PUBLIC HEALTH AWARD TO PALLIUM INDIA’S DR RAJAGOPAL 
[HTTP://PALLIUMINDIA.ORG/2012/01/RANBAXY-PUBLIC-HEALTH-AWARD-TO-PALLIUM-INDIAS-DR-RAJAGOPAL/]
 

         This year’s RANBAXY [HTTP://WWW.RANBAXY.COM/] PUBLIC HEALTH AWARD goes 
to Pallium India’s chairman, DR M.R. RAJAGOPAL. 

        Previous winners of the award include, 
        * MR. S.R. RAO, former Commissioner of Surat
for his contribution to the cleaning of the town in the aftermath of plague in 
1990s and for setting up systems which will keep the town clean. 
        * JUSTICE K. NARAYANA KURUP, Former Acting Chief Justice and Judge, 
High Court of Madras
in recognition of his outstanding contributions on wide ranging issues of 
societal concern and especially his relentless crusade against tobacco. 
        * PROF. K. SRINATH REDDY, President, Public Health Foundation of India
in recognition of his contribution towards promotion of health, prevention of 
cardiovascular and other chronic diseases and for his role in championing 
tobacco control. 

        The Award Presentation Ceremony will be on February 27, 2012 at the 
Jawaharlal Auditorium, All India Institute of Medical Sciences 
[http://www.aiims.edu/] , New Delhi. 

        - 

INDIAN RURAL MEDICAL DEGREE (MBBS) ABANDONED? 
[HTTP://PALLIUMINDIA.ORG/2012/01/INDIAN-RURAL-MEDICAL-DEGREE-MBBS-ABANDONED/] 

        We’ve just learnt that the much-awaited Indian Rural MBBS 
[http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)61006-9/fulltext?rss=yes]
 , which we had blogged about in October 2010 
[http://palliumindia.org/2010/10/rural-mbbs-degree-in-india/] , has been 
abandoned. 

        The MBBS will be replaced by a 3-1/2 year course leading to a BSc in 
Community Health Care. 

        The graduates are expected to serve at the sub-centres as a link 
between the nursing auxiliaries/public health nurses and the doctor at the 
Primary Health Center. 

        - 

LET US REJOICE: NO POLIO IN THE LAST YEAR! 
[HTTP://PALLIUMINDIA.ORG/2012/01/LET-US-REJOICE-NO-POLIO-IN-THE-LAST-YEAR/] 

         [http://www.thehindu.com/health/policy-and-issues/article2796401.ece] 
13th of January is a very special day. Two years back, in 2010, India was the 
country with the largest incidence of poliomyelitis in the world. 

ON THE 13TH OF JANUARY 2012, INDIA COMPLETES ONE YEAR WITHOUT A SINGLE REPORT 
OF WILD POLIOMYELITIS!

        Tremendous achievement indeed! 

        Apologies for bringing in unpleasant thoughts to celebration time. But 
do let us spend a moment to think how India will treat the survivors from 
previous years! 

         Read more in the Hindu… 
[http://www.thehindu.com/health/policy-and-issues/article2796401.ece] 

        - 

IAPCON 2012: PRECONFERENCE CME – UPDATE 
[HTTP://PALLIUMINDIA.ORG/2012/01/IAPCON-2012-PRECONFERENCE-CME-UPDATE/] 

         
[http://palliumindia.org/cms/wp-content/uploads/2012/01/iapcon2012cme-details.pdf]
 Dr. Sanghamitra Bora from Cancer Centre Welfare Home & Research Institute, 
Kolkata has sent us a detailed programme for the Preconference CME to be held 
at IAPCON 2012 [http://www.iapckolkata2012.org/] . 

         View on their website 
[http://www.iapckolkata2012.org/preconfworkshop.html]  or download the pdf here 
[http://palliumindia.org/cms/wp-content/uploads/2012/01/iapcon2012cme-details.pdf]
 . 

        - 

RECOGNITION FOR PALLIATIVE CARE: AWARD TO ALPHA PAIN CLINIC 
[HTTP://PALLIUMINDIA.ORG/2012/01/RECOGNITION-FOR-PALLIATIVE-CARE-AWARD-TO-ALPHA-PAIN-CLINICRECOGNITION-FOR-PALLIATIVE-CARE-AWARD-TO-ALPHA-PAIN-CLINIC/]
 

         [http://www.alphapainclinic.in/] Alpha Pain Clinic 
[http://www.alphapainclinic.in/] , founded by Mr K.M. Noordeen, is to be this 
year’s recipient of the “CHIRAYINKEEZH ANSAR MEMORIAL AWARD“. 

        Chosen by Abu Dhabi Malayali Samajam [http://www.abudhabisamajam.com/] 
, the award is in recognition of Alpha Pain Clinic’s social work among people 
in pain and suffering. 

        The award scroll and the purse of Rs. 100,000 will be received by Mr 
Noordeen in Abu Dhabi. 

CONGRATULATIONS ALPHA!

        - 

YOUNG MINDS “MEET THE SCIENTIST” IN KOLKATA 
[HTTP://PALLIUMINDIA.ORG/2012/01/YOUNG-MINDS-MEET-THE-SCIENTIST-IN-KOLKATA/] 

         

        Dr. Sanghamitra Bora from Thakurpukur Cancer Center and Research 
Institute [http://www.cancercentrecalcutta.org/] , Kolkata, writes to say, "

        I was one of the panelists in “MEET THE SCIENTIST” program in Eastern 
India Science Fair [http://www.bitmcal.org/calendar_sciencefair.php] at 
Kolkata. 

        It was good to be with young students of 4th to 12th. There were about 
250 young children and you won’t believe, they came up with such beautiful 
questions. 

        One sixth standard student asked me: _“IS THERE A RELATION BETWEEN 
SCIENCE AND RELIGION? AND WHAT IS IT?”._ 

        Another question was: _“DO YOU MEAN TO SAY THAT YOU HAVE BEEN DEFEATED 
BY CANCER ONCE IT HAS BEEN DECLARED INCURABLE?”_ 

        Many of them took my number and shared their experiences while dealing 
with cancer patients who were their relatives." 

        CONGRATULATIONS, DR SANGHAMITRA. 

NO DOUBT, ADVOCACY WOULD BE MOST WORTHWHILE WHEN WE WORK WITH YOUNG MINDS.

        - 

PARTING SHOT

INAPPROPRIATE INTENSIVE CARE 
[HTTP://PALLIUMINDIA.ORG/2012/01/INAPPROPRIATE-INTENSIVE-CARE/] 

         [http://www.flickr.com/photos/35034360660@N01/76765412/] Systems 
develop as solutions to problems, but once developed, they have a tendency to 
fall into a rut and go on even when perceived to have flaws. 

        Sometimes even to become part of the problem. 

        Intensive care in the context of incurable diseases is a case in point. 

        WHAT IS THE PURPOSE OF INTENSIVE CARE? 

        It is aimed at Intensive monitoring and Intensive therapy so that 
individual organ dysfunctions are identified early and corrected and lives are 
saved. Which is a great thing to achieve when the life is indeed salvageable 
and when the salvaged life is of reasonable quality. 

        Unfortunately, medical science, by and large, seems to have failed to 
restrain this facility with the result that even people who are obviously dying 
of incurable diseases are subjected to isolation in intensive care units where 
there is no difference between day and night, where they are imprisoned by 
monitors and devices with a tube in every orifice, where they die after 
prolonged suffering, devoid of human contact. 

        A study published by Ruth D Piers and colleagues in the Journal of 
American Medical Association [http://jama.ama-assn.org/] (JAMA. 2011;306: 
2694-2703 
[http://jama.ama-assn.org/content/306/24/2694.abstract?sid=2f432647-8ecd-41ad-9154-7c80149384b4]
 , 2725-2726 [http://jama.ama-assn.org/content/306/24/2725.extract] ) found 
that 27% of respondents (doctors and nurses working in intensive care units) 
perceived inappropriate care happening in at least one patient under their care 
on a particular day. 

        And in 89% of such cases, patients received inappropriately “too much” 
care. 

BUT THE SYSTEM GOES ON, REGARDLESS.

BETTER PROTECT YOURSELF WITH “ADVANCED CARE DIRECTIVES” 
[HTTP://PALLIUMINDIA.ORG/2011/12/AVOIDING-INAPPROPRIATE-HEALTH-CARE-WITH-ADVANCE-DIRECTIVES/]
 !

Other related posts:

  • » Pallium India Newsletter: January 2012 - Pallium India Newsletter