Care Beyond Cure
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! August 2017 !
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August 1, 2017
ASHLA RANI WINS YOUTH ICON AWARD 2017
“If I had a choice, I would opt to walk again. But it is also true that
my life in a wheelchair for the last few years has been more worthwhile than
that of the 28 years when I could walk”, said Ashla Rani, addressing a public
meeting at Kochi last year.
That “worthwhile work” as volunteer with Pallium India made Ashla one
of the winners of Kerala Youth Commission’s Youth Icon award 2017. Ashla has
been selected under the category “Social Service”.
Ashla Rani joined Pallium India in 2014 as executive assistant to
Pallium India’s Chairman. Currently she also works for Pallium India’s
educational support program for children of poor patients, and provides
emotional support and counselling to people who are in the throes of depression
and loneliness. She also leads a campaign to make Trivandrum city wheelchair
The youth icon award will be presented to Ashla Rani and the winners of
other categories by the Chief Minister Pinarayi Vijayan at Trivandrum on August
Congratulations, dear Ashla, and thank you for everything you do.
_Read Ashla’s story published in ehospice._
THE ECONOMIST INTELLIGENCE UNIT REPORT: GLOBAL ACCESS TO HEALTHCARE
In 2015, The Economist Intelligence Unit published the _Quality of
Death Index_ [http://palliumindia.org/2015/10/frightening/] in which, out of 80
countries studied, India had ranked one of the worst 15 countries to die in.
Now, in a new study published by The Economist Intelligence Unit on
Global Access to Healthcare, India finds itself among the worst 10 in equity of
access to health care.
This report looks into how healthcare systems across 60 countries are
working to offer solutions to the most pressing healthcare needs of their
The key findings are:
* Political will and a social compact are prerequisites for both access
and sustainable health systems.
* Public investment underpins good access and demonstrates the
commitment of governments to ensuring the health of their populations
* Universal coverage does not mean universal access, but extending
universal health coverage (UHC) can be a crucial part of improving access.
Click here to read the report
UN WORKING GROUP ON AGEING TO CONSIDER LONG TERM AND PALLIATIVE CARE
Two very important aspects of elder care are coming into focus in UN
Working Group on Ageing. They are the mutually related areas of “palliative
care” and “autonomy and independence”.
Please read: UN Working Group on Ageing to Consider Long Term and
Thank you, Katherine Pettus, for bringing this to our attention.
“HIPPOCRATIC”: A DOCUMENTARY ON DEVELOPMENT OF PALLIATIVE CARE IN INDIA
“ Hippocratic: 18 Experiments in Gently Shaking the World
[http://hippocraticfilm.com/] ” featuring Dr M. R. Rajagopal will be released
on World Palliative Care Day, Oct 14, 2017.
ABOUT HIPPOCRATIC: "
_Hippocratic is a feature-length film exploring the life story of this
acclaimed Indian pain & palliative care physician, Dr M. R. Rajagopal. This is
a must-see documentary for all those interested in the power of the human
spirit, human rights and social justice. It is essential viewing for anyone
working in health care, medicine, nursing and public health._
Thank you, Mike Hill, Sue Collins and Moonshine Agency, for this
wonderful tribute to our Founder-Chairman and for bringing the course of
palliative care in India to the eyes of the world."
WATCH THE TRAILER [http://hippocraticfilm.com/]
WHAT’S IN A NAME? A LOT, PERHAPS.
In response to Pallium India’s newsletter of July 2017
[http://palliumindia.org/2017/06/july-2017/] , Prof. June L. Dahl, Professor
Emerita of Neuroscience, University of Wisconsin School of Medicine & Public
Health, Madison, Wisconsin, writes to us: "
I know it is common to refer to short-acting opioids as immediate
release opioids. I believe drug companies coined the term ‘immediate release’
to distinguish the older (short-acting) drugs from the opioids that are
specially formulated to provide a long duration of effect. The opioid is slowly
released from those oral formulations. But short-acting opioids are not
immediately released – it takes 45 minutes to an hour to achieve analgesic
blood levels after ingestion of morphine sulfate, hydrocodone, hydromorphone or
oxycodone tablets. That is not indicative of immediate release of these
opioids. There are oral transmucosal delivery formulations of fentanyl that do
provide more immediate release of fentanyl and a shorter duration of action
than is characteristic of morphine, hydromorphone, hydrocodone or oxycodone
Knowledge of the pharmacokinetics of opioids is essential to the wise
use of these drugs. I am wondering what clinicians expect from so-called
immediate release formulations of opioid analgesics? Surely they can’t expect
quick onset of action. Why can’t one use the accurate term to describe the
Thank you, Prof June Dahl, for pointing out to us that the use of the
term ‘immediate release’ can be misleading.
THE SOUND OF MUSIC TO RELIEVE SUFFERING
_Sajan Antony, Social Worker at Pallium India writes:_ "
“Music is the mediator between the spiritual and sensual life” –
On World Music Day, 21 June 2017, Pallium India conducted a program for
the residents of our inpatient centre – live music to ease suffering.
We are grateful to Raji Vishwanathan, who volunteered to perform for
our patients and their families. The _keerthanam_ she rendered enthralled her
audience. She was met with requests for _encore_, while others sang light music
and _keerthanams_. My colleague Reshma and I joined them. Reshma, though not a
trained singer, delighted us with her rendering of a beautiful _keerthanam_.
Everyone smiled and swayed to the music, forgetting their troubles for a while.
What a wonderful way to relieve pain and suffering!"
Thank you Raji Vishwanathan, for taking the initiative. We look forward
to starting more such activities.
PALLIUM INDIA ORGANIZES REHABILITATION PRODUCTS SALE
“I ride a tricycle. When I seek help, people either ignore it or make
nasty comments. It is a painful experience. I once had to hire head load
workers to carry me down from an auto rickshaw while visiting a government
hospital. Even the pension for the disabled is not given on time.”
These are the words of Aji, a differently-abled person who makes a
living by making handicrafts from recycled materials and working as a cobbler.
Aji was one of the ten people on wheelchairs who had put up their products for
sale at the Saphalyam Complex, Trivandrum on July 7, 8, 9. The program was
inaugurated by G. Shankar, Director of Habitat Group. _Read the report in The
New Indian Express._
Ninsy Mariam Mondly, an artist on a wheelchair, enthralled visitors
with her paintings. Preetha, who makes beautiful jewellery, Sindhu, who creates
paper bags and lotions, Ambika who makes pillow covers, table clothes and
towels, and Mohanan who makes knives, were some of the others whose products
were on sale at the event.
We thank TRIDA executives and Pallium India’s staff, volunteers and
well-wishers for making this program a huge success.
If you are interested in purchasing any of the products mentioned
above, please write to us: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx]
A TOUCHING VIDEO FROM WION: DON’T MISS IT.
Manju has cancer. She and her husband have moved from their faraway
village to Delhi for treatment. Manju talks about her concerns: small children,
their education; their future. The husband adds that the dad and mom and the
younger brother are all ill. He will have to get through Manju’s treatment, and
go back to the village and sort it all out. He adds with a faint smile, “All I
can say is, let us keep smiling. Try to be happy. The happier you are, the more
effective the treatment”.
How can you help getting inspired by the simple wisdom of that man! Or
from the laughing children with cancer! Watch Priyanka Verma’s show on WION –
Ours being a democratic country, each one of us is responsible for the
sorry state of needless suffering in the country due to lack palliative care
ADDRESSING EMOTIONAL AND SPIRITUAL SUFFERING
Alex Pierce, one of the three visitors Pallium India had for a month of
palliative care training through Child Family Health International (CFHI),
spoke about his experience, towards the end of the program.
“Last week at home visits, Dr Annamma sat down with a patient, held his
hand and talked to him as a person before she started a physical examination.
During the consultation, the man mentioned his loneliness. Dr Annamma
joined the man in prayer. These are not things that I am used to seeing in
There is cancer in my family. It is good and reassuring to see there is
a healthcare system that addresses emotional and spiritual suffering like this.
On a personal level, I shall remember to listen more when there is illness in
THEME FOR WORLD HOSPICE AND PALLIATIVE CARE DAY ANNOUNCED:
The WHPCA has announced the theme of this year’s World Hospice and
Palliative Care Day:
“UNIVERSAL HEALTH COVERAGE AND PALLIATIVE CARE: DON’T LEAVE THOSE SUFFERING
It falls on 14 October 2017 (2nd Saturday of October).
Please see the WHPCA website for more information:
CHILDREN’S EDUCATION PROGRAM – YOU CAN HELP!
Pallium India supports the education of children from families ravaged
by disease. Many of them were on the verge of dropping out of school owing to
financial difficulties. This year, Pallium India supports the education of 300
students (upto +2). The average fee (including tuition & transport) is
estimated to be ₹7,500 per child, this year. We need your assistance to meet
CAN YOU HELP?
Our target is to raise _₹5,00,000 _by_ JULY 15TH, 2017_.
Whatever you donate, however small an amount it may seem, would go a
long way in reaching our goal.
You can donate online, or through NEFT, or via demand draft. Let us
know that your donation is for “Children’s Education Program”. Please visit
this link for details: http://palliumindia.org/donate/
In case of queries, please contact us: info@xxxxxxxxxxxxxxxx
[mailto:info@xxxxxxxxxxxxxxxx] / 9746745497
_(Image: Kuttikkoottam Summer Camp for children, April 2017)_
DONATE TO PALLIUM INDIA [HTTP://PALLIUMINDIA.ORG/DONATE/]
[http://palliumindia.org/donate] The money you give will pay for
essential free medicines for the poor, for their travel to the clinic or for
schooling of their children, or other forms of care. Please give whatever you
can. No amount is too small.
To donate, please visit: palliumindia.org/donate
Write to us: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx] /
HOW TO DEAL WITH DEATH AT HOME
_By Jean Jacob _
“What should I do after he passes away? I mean…the practicalities. How
do I deal with the dead body at home?”
It was this question, put to me by the son of a patient whose home we
were visiting in Hyderabad, India, that inspired me to write this article. The
patient was an elderly gentleman with a terminal medical condition. We were
there to offer the patient and the family, palliative care.
One of the services provided by palliative care, a medical specialty
that deals with life-limiting and terminal illnesses, is to plan for a good
death. This involves providing supportive care to the patient and relief from
pain and other symptoms (at home or in the hospital, as per the patient’s
choice), and also providing support to the family during the last days of the
patient’s life and beyond death, to assist the family with the practical
arrangements that need to be made and to provide bereavement care.
If a patient’s last wish is to die at home, then we want to support the
family through that process with the necessary information and guidance.
As our palliative care service is based in Hyderabad, I can tell you
how it works here. The first thing you need to do is to get a doctor that lives
nearby (or call for one from a hospital nearby) to come and confirm the death.
It would be a good idea to find this doctor beforehand and inform them that you
have a dying relative at home. Request the doctor to provide you with a written
record of the time and date of death (and probable cause if it is a known
life-limiting illness like cancer, heart disease etc.) on their official
letterhead. Next, you need to decide whether you are going to move the body
right away or whether you need to wait for relatives to come. In the latter
case, you can rent a freezer box to preserve the body at home till you are
ready to transport it to the cremation or burial ground. This will cost around
₹3000 per day, and you can find the contact for dead body freezer box rentals
on Google. You can also contact our palliative care society
[http://www.palliativecarepartners.in/] for details on freezer box and hearse
When you are ready to move the body from home, you need to make contact
with the nearest cremation or burial ground, as per the religious beliefs of
the deceased. For Hindus, there are _Smashana Vatikas_ that will take care of
cremation (electric or wooden) at a cost of around ₹4000. Additional puja
services can cost between ₹10,000 to 20,000. For Muslims, contact the nearest
_Kabristan_. The burial will cost around ₹4000, which is labor charge for the
grave diggers. Christians will have church memberships that include right of
burial on church grounds, and for those who don’t have such a membership,
certain churches may allow for funeral services at a cost of around ₹3000. Call
and inform the facility beforehand so arrangements can be made.
Carry the Aadhaar card or other identity proof of the deceased and the
doctor’s death declaration with you and at the end of the funeral service
collect a receipt of cremation or burial from the facility. This receipt, the
doctor’s declaration, and copy of the identity proof of the deceased need to be
submitted at the nearest Greater Hyderabad Municipal Corporation (GHMC) office.
In addition, you will need to submit copies of your own Aadhaar card and of the
electricity bill as address proof. In 2-3 weeks, the death certificate will be
available on e-Seva online.
Dealing with the death of a loved one is something difficult that we
all have to go through in life. This article describes the practicalities of
how to deal with death at home in Hyderabad. It is reasonable to suppose that
this protocol can be used in other cities and towns in India. For help with
this and other aspects of care for a loved one at the end of life, contact your
nearest palliative care service. If you are in Hyderabad, reach out to us:
palliativecarepartners@xxxxxxxxx [mailto:palliativecarepartners@xxxxxxxxx] or
_The author is a palliative care physician employed by Two Worlds
Cancer Collaboration, Canada, and working with the Pain Relief and Palliative
Care Society (PRPCS) in Hyderabad. He can be contacted at jeanjacob82@xxxxxxxxx
_A short version of this article was published by Deccan Chronicle
UPCOMING EVENTS [HTTP://PALLIUMINDIA.ORG/COURSES]
AUG 11, 2017: ICRA Pain 2017 (International Conference on Recent
Advances in Pain), Hotel Hyatt Regency, Pune. Theme: “From Tears to Cheers”.
Visit: http://www.icra-pain2017.com/ [http://www.icra-pain2017.com/] Contact:
AUG 18, 19, 20: Volunteers’ Training Program in Trivandrum. Contact:
9746745497 / info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx]
SEP 4, 2017: One month certificate course in Pain and Palliative
Medicine for Doctors, Nurses, Social Workers and Volunteers in Hyderabad,
Telengana. Contact: mnj.palliative@xxxxxxxxx [mailto:mnj.palliative@xxxxxxxxx]
SEP 6, 2017: 6 week certificate course in Palliative Medicine/nursing
for Doctors and nurses at Trivandrum, Kerala. Contact: info@xxxxxxxxxxxxxxxx
SEP 6, 2017: 10 days Foundation course in Palliative Medicine for
doctors in Trivandrum, Kerala. Contact: info@xxxxxxxxxxxxxxxx
OCTOBER 14, 2017: International conference on Peri-operative Cancer
Care at Jawaharlal Nehru Auditorium, AIIMS, New Delhi. Register:
FEB 23, 2018: IAPCON 2018, Jawaharlal Auditorium, AIIMS, New Delhi.
Visit: http://www.iapcon2018.com/ [http://www.iapcon2018.com/]
FEB 24, 2018: 8th Congress on PAIN – South Asian Regional Pain Society.
Last date to register: 1 January, 2018. Contact: bssp1997@xxxxxxxxx
[mailto:bssp1997@xxxxxxxxx] Website: www.bsspbd.com [http://www.bsspbd.com]
For details on these programs, contact: info@xxxxxxxxxxxxxxxx
[mailto:info@xxxxxxxxxxxxxxxx] . Find out more at:
JOIN OUR FACEBOOK PAGE [HTTPS://WWW.FACEBOOK.COM/PALLIUMINDIA]
Pallium India’s Facebook page has over 5000 Likes. We regularly post
articles related to palliative care from around the world.
CLICK HERE TO LIKE OUR PAGE [HTTPS://WWW.FACEBOOK.COM/PALLIUMINDIA] !
We’re also on Twitter: @palliumindia [https://twitter.com/palliumindia]
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/
“BY ITS FRUITS, ONE KNOWS THE TREE.”
_By Ana Luísa Pereira and Tania Chalton_
“By its fruits one knows the tree.” – Brazilian proverb
It is important to talk about this tree. As visitors that came from
far, it is inspiring to see Pallium India’s patients and families – it is not
an overstatement to say how much your work brings them answers, respect, relief
and orientation. In the storm of pain and disease there is a safe harbor.
We don’t need to know more than three words in Malayalam* to see that.
Pallium’s fruits speak for themselves.
The tree is growing, not only providing shelter to so many different
patients and families but also welcoming those who want to learn and improve
palliative care worldwide.
The nurses are in the roots, the body and branches of this tree. They
go way beyond care and comfort and holding hands and bringing a smile.
In every shift, in every visit, you carry in your arms the
responsibility of one of the most rewarding jobs in world, navigating the
system and crossing the shadows of suffering.
We won’t talk about holding hands. The celebration goes to the arms.
You hold hands but your arms are arms. Arms that fight for those who can’t
fight for themselves. Arms that hold, relieve, change. Arms that tell, hear and
prepare. Arms that learn, teach and grow. Not just the hands, the holding of
You, nurses, are the engineers that balance art and science by the
bedside of the patient. In a room or a ward. In a corridor or in a street. At a
meeting or a conference.
We celebrate the nurses of yesterday and the nurses of tomorrow. The
nurses that know and the nurses that learn. The nurses that do and the nurses
So raise your arms and keep your fight so inspiring.
_*Important note: We know more than three words in Malayalam._
_Ana (physician) and Tania (nurse) are volunteers who visited Pallium
India in May 2017._