Care Beyond Cure
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! June 2016 !
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May 31, 2016
SLOW, VERY SLOW PROGRESS; BUT CLEARLY POSITIVE TREND IN ACCESS TO PAIN RELIEF
We have generally relied on the quantity of morphine going out of the
Government Opium and Alkaloid Works (GOAW) as the index of access to pain
relief in India. Practically, the whole amount is utilised in India and though,
this is not the perfect way of assessing consumption, it is still a reasonably
We are very glad to report to you that the trend is clearly positive. The
first time in the last quarter century, the consumption of morphine in the
country went up above 300kg. In fact, it was 329kg in 2015.
We thank Mr A. K. Saxena of GOAW for providing the statistics and all
at Department of Revenue of Government of India for the support.
Reacting to our blog, Shri Romesh Bhattacharji, former Narcotics
Commissioner of India tweeted that though it has reached an all-time high of
the last quarter of a century, it is still way below the pre-NDPS Act, 1984
level of 411 Kg! Sobering thought!
Well, better days are coming, we are sure! (Wish they would come a bit
CHILDREN BACK HOME FROM ORPHANAGE, FAMILY REBUILT: THE POWER OF PAIN RELIEF.
[https://www.youtube.com/watch?v=1mtwrtiUYBQ] We palliative care
workers are often at a loss to convey adequately to others the simple fact:
INTENSITY OF PAIN CAN BE BEYOND OUR IMAGINATION.
SEE THIS VIDEO: USING MORPHINE TO STAY ALIVE
Zubair had intolerable pain from what had been diagnosed as giant cell
tumor. 3 step-wise amputations later, he was in agonising pain – like needles
being stabbed into him all the time.
He lost his job. He lost his home. He had to send his children to an
In 1994 he was started on morphine. He has to take it even now.
But today, he is earning. He works all day, still on morphine. He
brought his children back from the orphanage. They had an education and are
grown up men and women now, earning for themselves.
Thank you Ankita Rao and Atish Patel for this visual evidence about the
power of pain relief.
PARTHASARATHI SHOME ON END OF LIFE CARE
“Female and male nurses hurried about pushing and shoving the inert
body, robbing any peace, contemplation or prayer. Where was palliative care?
When she did leave, not a single doctor or nurse came by; only a new one
appeared to issue the death certificate. Where was compassionate care?” asks
Parthawarathi Shome, the celebrated economist, about his mother’s treatment at
the end of her life.
Somebody who matters had to ask these questions.
Read his article in the Business Standard: Compassionate and Palliative
METHADONE AVAILABILITY SEEMS VERY LIKELY
For the patient in pain who does not tolerate morphine very well (a
proportion of patients may not, for genetic or other reasons), we have had no
other opioid pain killer available for oral use in India. In most of the
countries, they switch from one opioid to another when one is not well
tolerated. But in India, if you cannot tolerate morphine, well, tough luck. Of
course, 99% of Indians have been putting up with even lack of access to
morphine; so who bothers about the minority who can get morphine but do not
Finally there is a ray of sunshine. The efforts of a lot of people seem
to have paid off. Access to methadone has been approved by the government of
India by the gazette notification in May 2015
. Now we understand that the Drug Controller General of India has approved
methadone tablets and syrup for sale for pain relief.
A word of caution to all palliative care people in India: Most of us
are not familiar with the medicine. Methadone needs to be understood; then it
will help us.
HOW WELL ARE WE REALLY DOING?
India’s poor performance in palliative care has been the subject of
much international attention; the New York Times
wrote not too long back, and the BBC
[http://www.bbc.com/news/world-asia-india-36137285] on 04 May 2016 wrote on the
BBC news quotes the Economist’s Quality of Death study which showed the
* 1: UK
* 2: Australia
* 3: New Zealand
* 4: Belgium 4
* and so on…
India came 67th out of 80, way below much poorer countries like Ghana
(51st out of 80). Malawi is one step above India.
The magnitude of suffering will be obvious only when we realize that
the situation is not too good even in the best! See what Scott Murray has to
say about UK in his article “ End of Life Care Still Not Living Upto Public and
Doctors’ Expectations [http://www.bmj.com/content/353/bmj.i2188?sso=] ” in the
British Medical Journal, 2016;353:i2188.
“WHY KERALA IS THE BEST PLACE IN INDIA TO DIE”
In a report titled “ Why Kerala is the best place in India to die
[http://www.bbc.com/news/world-asia-india-36137285] “, Atish Patel of the BBC
“Kerala has more palliative care centres than the rest of the country
put together and its extensive programme is bolstered by thousands of
volunteers who give up their time to tend to those who are incurably ill,
bedridden or nearing the end of their lives.”
Kerala can be proud. But not complacent. We are doing well only in
comparison. Most of our hospitals do not have pain relief or palliative care
programs even now.
That elderly woman in the picture is luckier than most others in her
situation in India, but what little we give her is only a tiny bit of what she
THE ECONOMIST ON THE PROBLEM OF PAIN
“Americans are increasingly addicted to opioids. Meanwhile people in
poor countries die in agony without them”, says this recent article in _The
that explores how ‘tighter prescribing’ to prevent abuse has caused unintended
“The International Narcotics Control Board (INCB), an independent
monitor that oversees the implementation of UN drug conventions, estimates that
92% of all morphine, an opioid commonly used to control the pain caused by
cancer, is consumed in America, Canada, New Zealand, Australia, and parts of
western Europe—which between them hold only 17% of the world’s population.”
“A report in 2009 by Human Rights Watch found that of some 300 Indian
medical colleges, only five taught palliative care. The consequence is that few
doctors know how to prescribe opioids safely. Even for patients with advanced
cancer, they avoid morphine.”
Read the complete article:
GLOOM HAS NO ROOM HERE
The Hindu on 6th May 2016 reports
_“Home has not been the same after my father’s death last year. But
Kuttikoottam gives me absolute fun, a temporary respite from my sorrows,” says
Abhirami. It is for the second time that 14-year-old Abhirami is participating
in Kuttikoottam, a three-day summer camp organised by the Pallium India trust
that began on Thursday._
As in previous years, about 70 school students got together for a
summer camp organised by Pallium India. The common bond between them: they are
all from families struggling with life-limiting diseases. Without support for
education, they might well have been forced to drop out of school.
Kudos to the volunteers who conceived this program and brought it to
For more photos please visit our Facebook page
[_Photo: The children who attended Kuttikkoottam 2016 with G. Venugopal
who inaugurated the program]_
THESE CHILDREN NEED YOUR SUPPORT [HTTP://PALLIUMINDIA.ORG/DONATE/]
We provide financial assistance and career guidance to our patients’
children who may have to drop out of school because of disease or death in the
family. We support their education all through to college and beyond – till
they can earn for the family. On an average we support 250-300 children every
The new academic year begins soon. Of the ₹1.5million that we need this
year, we must find ₹150,000 (US $2300) by 15 June. Please help.
To donate, please visit: http://palliumindia.org/donate/
[http://palliumindia.org/donate/] . Kindly add a comment during the online
transfer or write to us (info@xxxxxxxxxxxxxxxx) after the donation is made, so
that we can make sure it is used for this purpose.
ADVOCACY FOR PALLIATIVE CARE IN DEMENTIA
Stephen Connor of WHPCA and Katherine Pettus of IAHPC led advocacy for
palliative care in dementia at the World Health Assembly, on 28 May, 2016, when
the WHA resolution progress report was discussed. "
“Dementia care at the end of life is increasingly being studied as the
different courses of patient deterioration warrant dementia-specific palliative
care strategies and treatment decisions more frequently need to consider
Read the IAHPC statement on access to opioid medicines for pain relief
delivered by Katherine Pettus at the World Health Assembly
On behalf of the whole world, Stephen and Katherine, thank you for all
that you are doing.
SYNDICATE BANK SUPPORTS PALLIATIVE CARE
On May 20th, 2016, Syndicate Bank donated a car to support Pallium
India’s home visit program. At a function organized in Syndicate Bank Regional
Office, Vazhuthacaud, Syndicate Bank General Manager Shri C. B. L. Narasimha
Rao presented the keys of a brand new Datsun GO+ to Dr M. R. Rajagopal,
Chairman of Pallium India. The program was attended by Syndicate Bank Regional
Manger, Pallium India’s CEO and Justice M. R. Hariharan Nair.
We thank you for your support!
UNDERSTAND YOUR GRIEF, SO THAT YOU CAN DEAL WITH IT.
The unknown is scary. If you know what you are going through, you can
deal with it.
Dianne Gray, chair of Elisabeth Kübler-Ross Foundation, shares with us
Livestrong Foundation’s document
that teaches youth how to understand and deal with grief. Don’t miss this; it
will help you some day.
Thank you Dianne, and thank you Livestrong Foundation.
MONIKA HAS ADVANCED CANCER; BUT SHE GIVES MORE THAN SHE TAKES.
“How can you do this work, day in and day out?” This is a question that
palliative care workers hear all the time. Honestly, we are often surprised at
the question. We cannot see how we can do anything else; it is so enriching.
People blossom near the end of their lives and give themselves to us, and we
change for the better.
You cannot afford to miss this story of 25 year old Monika Ahuja, her
story so beautifully written
[http://www.tandfonline.com/doi/full/10.3109/15360288.2016.1161691] by her
palliative care doctor, Dr Aditi Chaturvedi, in the _Journal of Pain and
Palliative Care Pharmacotherapy_
[http://www.tandfonline.com/toc/ippc20/current] . Read: A Changing Force in My
The _Journal of Pain and Palliative care Pharmacotherapy_ is an indexed
journal that has made the narratives free access. The journal welcomes your
Narratives on Pain, Suffering and Relief
[http://explore.tandfonline.com/page/med/ippc-pain-narratives] . Tell your
story to the world and help improve palliative care awareness. If you have a
story to narrate, share it with us. Write to info@xxxxxxxxxxxxxxxx
NEEDED: A CONCERTED SHIFT IN THE MEDICAL SYSTEM
“In India, there is a fight-to-the-death mentality about treating the
terminally ill,” writes Dr Jean Jacob in an article titled “ Last Resort: India
is a bad country to die in
” published in _The Caravan_ [http://www.caravanmagazine.in/] dated 1 May 2016.
“Doctors treating a patient who is past the point of being able to make her own
decisions are bound to obey the wishes of her relatives, who typically opt to
use all possible means to prolong her life, no matter how artificial that life
Dr Jacob writes about an 83-year old man with terminal lung cancer who
was brought to the Intensive Care Unit of his hospital where he was on duty as
an intensivist. After receiving a battery of treatments aimed at prolonging his
life, his vital organs began to fail, and their functions were compensated with
drugs and invasive tubes. “Confined to a cold bed, isolated from his family and
friends, and at the mercy of strangers in white coats, he had a mental
breakdown. He raved about how the nurses were trying to kill him, and demanded
that he be set free.”
Dr Jacob continues: “To address the situation here, India will need
legal reform, and a concerted shift in the medical system to provide greater
access to end-of-life care outside hospitals. Such care, if properly planned,
can be provided effectively and affordably in patients’ homes, through
community-based approaches. There are numerous good examples of such systems
across the world, but perhaps the best one for India to consider already exists
on its soil.”
Read the complete article at:
WORLD HOSPICE AND PALLIATIVE CARE DAY THEME ANNOUNCED – ‘LIVING AND DYING IN
PAIN: IT DOESN’T HAVE TO HAPPEN’
World Hospice and Palliative Care Day is a unified day of action to
celebrate and support hospice and palliative care around the world. It takes
place on the second Saturday in October each year. This year, World Hospice and
Palliative Care Day will take place on Saturday 8 October. The theme of World
Hospice and Palliative Care Day 2016 is: ‘Living and dying in pain: It doesn’t
have to happen’. Continue reading->
INTERNATIONAL UPDATE ON PAIN MANAGEMENT AND PALLIATIVE CARE ADVANCES AT
The “ International Update on Pain Management and Palliative Care
Advances 2016 [http://www.sgrrmc.com/iuppca2016/] “, organized by the Pain and
Palliative Care Unit, Shri Guru Ram Rai Institute of Medical and Health
Sciences and the Indian Medical Association, Dehradun will take place on 25 &
26 JUNE 2016. The theme of the update is “Palliative Care-Everyone’s business”
and “Pain Relief-A Fundamental Human right”. VENUE: SGRR Institute of Medical
and Health Sciences, Patel Nagar, Dehradun 248001, Uttarakhand.
On June 25th, a workshop aimed at explaining in detail the NDPS Rules,
its amendment, procedure to obtain Recognized Medical Institution (RMI) status
for procuring and dispensing opioids etc. will be conducted, followed by a day
long conference on 26th June 2016. For more details, visit:
The speakers include Dr M R Rajagopal (Pallium India, Kerala), Dr
Sushma Bhatnagar (AIIMS, Delhi), Dr Anjum Khan Joad (Jaipur), Dr Gautam Das
(Daradia, Kolkata), Dr Brenda Ward (England), Dr Ann Thyle (Delhi), Dr Abir
Doger (England) and Dr Savita Butola (Jalandar) who will share their expertise
and path breaking ideas.
For registration and other details, please contact Dr Mayank Gupta
(Organizing Secretary): Ph.: 08171238996, Email: drm_gupta@xxxxxxxxxxx
[ Click on the image to view the complete scientific program
TRAINING: AN INTRODUCTION TO PALLIATIVE CARE [HTTP://PALLIUMINDIA.ORG/COURSES]
Are you interested in knowing more about palliative care and its
relevance in today’s society? Would you like to volunteer for the cause? Can
you work with an existing palliative care centre in your area and help improve
access to pain relief for the needy? Or, work with a hospital and start a
palliative care centre? Can you arrange awareness programs in your area? There
is something for everyone to do. Every little action helps. You need not be a
medical professional. All you need is a willing heart.
If this resonates with you, then this training is for you. Pallium
India organizes two-day trainings on palliative care at Trivandrum once in two
months. The upcoming training is on June 17-18 at Arumana Hospital,
Contact us for details: info@xxxxxxxxxxxxxxxx
[mailto:info@xxxxxxxxxxxxxxxx] / 9746745497
INTERNATIONAL VISITORS [HTTP://PALLIUMINDIA.ORG/PROGRAMS/VISITORS/]
We welcome international visitors at Pallium India and appreciate the
support from our colleagues around the world. We request that you contact us at
least 2 weeks prior to your visit so that we can make the necessary
arrangements. Sorry; we would discourage “drop-ins” for fear of the impact on
We have observership programs for interested professionals and
students, collaborative visits, and long term placements. Click here
[http://palliumindia.org/programs/visitors/] for more information. Contact:
SCHOLARSHIP PROGRAM FOR CERTIFICATE COURSES
Indo American Cancer Association (IACA), in association with TIPS (an
organ of Pallium India), is offering a scholarship to undergo a 6 weeks
residential/non residential palliative care training course at selected centres
* MNJ Institute of Oncology, Hyderabad, Telengana. Contact:
* Trivandrum Institute of Palliative Sciences, Trivandrum, Kerala.
Contact: education@xxxxxxxxxxxxxxxx [mailto:education@xxxxxxxxxxxxxxxx]
* TATA Medical Centre, Mumbai, Maharashtra. Contact:
muckadenma@xxxxxxxxxx [mailto:muckadenma@xxxxxxxxxx] , anuja.damani@xxxxxxxxx
* Gujarat Cancer and Research Institute, Ahmedabad, Gujarat. Contact:
* Bhagwan Mahaveer Cancer Hospital & Research Centre, Jaipur, Rajastan.
Contact: palliumjaipur@xxxxxxxxx [mailto:palliumjaipur@xxxxxxxxx]
TYPE OF SCHOLARSHIP
Depends on performance of the candidate in the telephonic interview
conducted by IACA interview panel.
Full support to the outstation candidates includes – Travel,
accommodation, canteen, local travel, fees with cap on all items. Partial
support is given to the local candidates.
Doctor – MBBS
Nurse – BSc/GNM
Please click on the following link for more info:
_For more information on our courses, please visit:
http://palliumindia.org/courses [http://palliumindia.org/courses] _
NSS STUDENTS VOLUNTEERS VISIT PALLIUM INDIA
NSS Student Volunteers from Sree Sankaracharya University of Sanskrit
Regional Centre Trivandrum Vanchiyoor visited Pallium India on 25th May 2015.
More photos at:
JYOTHIKUMAR BAGS AN AWARD!
This is Jyothikumar, a resident of Cheshire Home, Trivandrum, and a
dear friend of Pallium India.
Years ago, he fell from a building during construction and was
paralysed. Jyothikumar is a multi-talented artist.
Jyothikumar’s collection of poems has won an award offered by Kerala
Government. From the entire team at Pallium India, Congratulations,
Read more at:
CARING FOR THE TERMINALLY ILL AND THOSE IN PAIN, PALLIATIVE CARE HAS HELPED
_By Anandita Jumde_
There are some moments in life that define you. They stop you in your
tracks, rudely shake you awake from your comfortable existence and push you to
reconsider your life choices. They go on to guide your every decision and
become an intrinsic part of your character.
M R Rajagopal experienced one such moment at quite a young age. He was
studying medicine when his neighbour was diagnosed with cancer. “He lived about
100 metres away,” recalls 68 year-old Dr Rajagopal, “All night I could hear him
screaming in pain. The family asked me if I could help because I was a medical
student, but I was in my first year and did not know much.”
OUR GLOBAL COMPLICITY IN TORTURE?
_By Brett Sutton_
When I was first introduced to palliative care as a medical student, it
struck me as a rather mysterious medical specialty. Remarkable in its
acceptance of death and dying, when all the rest of us were battling to save
lives, almost as an end in itself. Doctors always out to ‘cheat death’,
regardless of means and sometimes wilfully disregarding the suffering incurred
along the way. Palliative care practitioners in stark contrast appeared to me
to be amazingly resilient, with depths of compassion and a unique medical
perspective. I still think that.
Now, though, after a twenty year career in emergency medicine and later
public health, I don’t see palliative care through that mysterious lens
MUCH OF WORLD SUFFERS NOT FROM ABUSE OF PAINKILLERS, BUT ABSENCE OF THEM
_By Rick Gladstone_
While Americans are confronting an epidemic of prescription drug abuse
, particularly for addictive painkillers, the reverse problem prevails in much
of the world.
Many ill people with a legitimate need for drugs like oxycodone and
other narcotics known as opioid analgesics cannot get them and are suffering
and dying in pain, according to health officials, doctors and patients’ rights
In Russia, India and Mexico, many doctors are reluctant to prescribe
these painkillers, fearful of possible prosecution or other legal problems,
even if they believe the prescriptions are justified.
A PLACE OF SOLACE AND PEACE AMIDST THE TURMOIL
_By John Ely & Jeena R. Papaadi_
At a recent six-week certificate course in palliative care, held at
Pallium India in Trivandrum, we asked course participants to read and discuss
the article: ‘Hospice – Where Peace and Turmoil Coexist’ by Dr Vidya Viswanath.
In this article, the author introduces to us to a young mother of two
with metastatic nasopharyngeal cancer, living with severe pain and the
indignity of tracheostomy and nasogastric tubes in place. Unable to speak, when
she was brought to the hospice, she wrote: “I do not want to live like this” on
a pad for her doctor to read.
CHOOSING A DIGNIFIED EXIT
_By Bindu Nair_
Modern medicine has advanced a lot — which is indeed a boon to
humanity. Even a limb severed in an accident can now be stitched back by
doctors under certain conditions using modern techniques. One who suffers a
heart attack can lead a normal life with the help of a bypass surgery or
angioplasty. A stroke victim can be saved if he or she is rushed to a good
hospital within the golden hour. But at the same time, there is a very
different aspect of modern medical practice that is seen to be manifesting
MY JOB IN PALLIATIVE CARE LET ME PRACTISE SOCIAL WORK AS IT IS MEANT TO BE
_By Suzy Croft_
When I started life as a palliative care social worker just over 26
years ago (although the term “palliative care” hadn’t been invented then) I was
based in a multi-professional team that supported people with terminal cancer
and their families in the community. I was employed by the north London borough
in which we worked. The first day I arrived at work the team administrator said
to me: “This is a good borough to work in; you can get anything you need for
patients here.” Well she was right (within reason) but oh how times have
A FIRST STEP FOR PATIENTS IN PAIN IN ARMENIA
_By Giorgi Gogia_
Several years ago I started researching the nearly insurmountable
barriers people with advanced cancer face in accessing opioid painkillers in
Armenia. I interviewed many people who were dying — in horrible pain. These
were devastating interviews, seared in my memory. I had to be careful not to
disclose an interviewee’s diagnosis – oncologists in Armenia do not normally
discuss the diagnosis and prognosis with their cancer patients because they
lack training on how to guide patients after the initial difficult
In many cases, these patients didn’t know they were dying. But others
DOCTOR’S NOTES: PALLIATIVE CARE IS NOT ABOUT DYING, BUT ABOUT QUALITY OF LIVING
There is now very clear evidence that people who receive specialized
palliative care actually live longer than those who do not. This is why it’s so
important to understand that palliative care is not about giving up — far from
it . It’s about living the very best you can for as long as you do.
Palliative care should be provided by family doctors, specialists and
many other health care professionals who are already treating people for
disease. This includes basic symptom management, emotional and mental health
support and the ability to discuss advance care planning and goals of care.
Read the complete article->
PALLIATIVE CARE INFORMATION CENTRE [HTTP://PALLIUMINDIA.ORG/INFO-CENTRE]
Contact Pallium India’s Information Centre (9 am to 12 noon) for
information related to palliative care and about establishments where such
facilities are available in India. Telephone: +91-9746745497 or E-mail:
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
A DANCE FOR THE NURSES ON INTERNATIONAL NURSES DAY
May 12, 2016 was International Nurses Day.
We thank all nurses for their selfless devotion towards people who need
You belong to one of the noblest professions in the world.
You heal with a look, with a touch, with a smile and with your
Best wishes to you to derive as much satisfaction from your work as the
comfort that you give to us all.
This month’s residents of Pallium India’s half-way home, Sameer, Shibu
and Gopika, along with social worker Dany, performed a dance for the nurses on
WHAT A GREAT WAY OF SAYING THANK YOU ALL, AND WE LOVE YOU ALL.