Care Beyond Cure
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! September 2017 !
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August 31, 2017
ICMR AND END-OF-LIFE CARE LAW
You may remember that in 2016, government of India put up on its
website the draft of an end of life care law. A major problem that we all
identified in the draft law was the confusion over meaning of terms,
particularly euthanasia being confused with withholding or withdrawing
artificial life support.
During the last International conference of medical ethics at Pune, we
requested Dr Soumya Viswanathan, the President of ICMR, to come out with
official terminology and definitions on the subject. Obviously realizing the
importance of the matter, she immediately agreed and entrusted work with Dr
A working group created for the purpose with the chairman of Pallium
India as the coordinator and stalwarts from the Indian Society of critical care
medicine, Indian Academy of neurology and Indian Association of palliative care
taking the lead, has created the document which is now on the ICMR website. We
must particularly recognize the phenomenal contribution by Dr Naveen Salins who
did the lion’s share of the work in creating the draft document.
The document can be seen in
Link to download PDF: Definitions of terms used in limitation of
treatment and providing palliative care at end of life
Thank you Dr Soumya Viswanathan, Dr Roli Mathur, Dr Raj Mani, Dr Roop
Gursahani, Dr Naveen Salins and many others for making this happen. And thank
you Karunashraya Hospice for hosting the working group meetings.
IMPORTANT DECISION FROM THE SUPREME COURT OF INDIA WITH POSSIBLE POSITIVE
IMPACT ON END OF LIFE CARE.
The recent verdict of the Supreme Court of India on the “privacy act”
includes an observation by Justice Chelameswar on the right to privacy being
inclusive of the right to self-determination on end of life care.
Please see the following evaluation by Arghya Sengupta: "
“I have closely read the judgment and having been part of the case
might be able to help in decoding some of the legalese.
1. The judges have unanimously held privacy to be part of personal
liberty that we enjoy under Article 21 of the Constitution.
2. This essentially entails the recognition that an individual ought to
be free to decide for himself/ herself in critical matters without interference
from others/ state.
3. The question which will then arise is: What are these critical
4. Though the answer to this will develop on a case-by-case basis, one
of the judges Justice Chelameswar, says on p. 303 (of the pdf; p. 37 of his
opinion), that one such matter is an individual’s decision to refusal to
prolong treatment and terminate one’s life.
5. While this is not binding law, it provides a strong argument which
can be used when the matter is next taken up, either legislatively or in court,
that the right to privacy ought to extend to the individual’s decision to
refuse to prolong treatment. However it should be noted that the right claimed
is not absolute and is subject to reasonable restrictions. To assess whether
any restriction by the State on the right to refuse to prolong treatment will
be reasonable, will depend on the exact nature of the restriction in that case.
So overall, the judgment on the whole, and the specific reference to
the refusal to prolong treatment, are both encouraging developments. Trust this
Thank you Mr Sengupta for this erudite evaluation.
A CANCER CENTRE WITH A HEART: KUDOS, DR RAGHUNADHA RAO!
What would you do if you were an oncologist and were given 77 acres in
a beautiful valley in Vishakhapatnam and asked to build a cancer centre?
You would get a good architect, good engineering team, select and order
the right equipment, look for the best staff, and start constructing, wouldn’t
Most people would. But not Dr Raghunadha Rao. He did all that, but at
the same time, he also started seeing patients. Often, with the patient under a
tree, an I.V. infusion set hanging from a low branch. Then he brought in
portable cabins made out of discarded containers.
That is not all. He also brought in one of the best palliative care
physicians in the country, Dr Vidya Viswanath, and simply integrated palliative
care into cancer care.
May your drive increase, Dr Raghunadha Rao.
SNEHA SANDHYA AGE CARE FOUNDATION AND AN INITIATIVE IN ANDHRA PRADESH
Wow, 11 events in two and a half days! Pallium India joined the vibrant
team at Sneha Sandhya Age Care Foundation in Vizag (Vishakhapatnam) on an
initiative to improve access to palliative care in Andhra Pradesh. We use the
word ‘vibrant’ with emphasis. Truly vibrant.
The days were packed with activities – several awareness programs for
the public, sensitization sessions for medical students and faculty of Health
University, the fifth anniversary celebration of Age Care Foundation, you name
it, we have done it.
We cannot but admire the team led by Dr Raju, who closely collaborates
with Dr Raghunadha Rao and Dr Vidya Viswanath at the Cancer Centre
, and with several educational institutions.
We have signed an MoU with Sneha Sandhya Age Care Foundation. We
promise you more action.
INTERNATIONAL ORGANISATIONS CALL FOR INCLUSION OF PALLIATIVE CARE IN WHO NCD
The Worldwide Hospice Palliative Care Alliance and the International
Children’s Palliative Care Network have submitted a response to the WHO online
consultation on the draft outcome document for Montevideo Roadmap 2018-2030 on
NCDs as a Sustainable Development Priority.
The main concern noted in the submission is the absence of any language on
palliative care within the draft outcome document. WHPCA and ICPCN note that
this is not in line with the WHA resolution 67.19 on palliative care or the
Global Action Plan on the Prevention and Control of NCDs.
HOPE FOR PEOPLE WITH ADVANCED CANCER: PALLIATIVE CARE WORKSHOP AT GOVERNMENT
CANCER HOSPITAL, INDORE.
More than 75,000 patients with advanced cancer are in pain in MP.
Government Cancer hospital, Indore, with the support of Pallium India
[http://palliumindia.org/] started a pioneering palliative care facility in
which pain and other symptoms are treated along with emotional support. Jivdaya
foundation also supports this initiative.
A workshop was held on 30 August 2017 to discuss modalities of
palliative care delivery with special emphasis on safe use of morphine. The
program was attended by doctors and nurses from several hospitals as well as
representatives of Sahayata, Lions club and several other non-government
Minister for health, Sharad Jain, and Usha Thakur, MLA visited the
workshop and extended their support for the compassionate activities of
palliative care personnel.
_[Photo: Sharad Jain, minister of health, with faculty and organise of
workshop at Indore]_
IAPCON 2018 [HTTP://WWW.IAPCON2018.COM/]
The 25th Annual Conference of the Indian Association of Palliative Care
( IAPCON 2018 [http://www.iapcon2018.com/] ) will be held from 23rd to 25th
February, 2018, at Jawaharlal Auditorium, AIIMS, New Delhi. The theme of the
conference is: CREATE, COLLABORATE AND COMMUNICATE.
Last date to submit abstracts: 30TH OCTOBER, 2017.
For more details on the Conference, please download the brochure
Visit the conference homepage: http://www.iapcon2018.com/
GLOBAL ONCOLOGY YOUNG INVESTIGATOR AWARD
The Conquer Cancer Foundation (CCF) of ASCO is accepting applications
for the inaugural 2018 Global Oncology Young Investigator Award (YIA). The
Global Oncology YIA is a one-year grant that provides research funding to
early-career investigators to encourage and promote quality research in global
oncology and to develop the next generation of researchers to address global
For 2018, the Foundation has funding for 5-10 grants, with total awards
between $25,000 to $50,000.
The application deadline is September 21, 2017, at 11:59 PM (EDT).
Recipients will be notified in April 2018.
For more information, please visit CONQUER.ORG/global-oncology-yia
PALLIATIVE CARE AWARD 2017 FOR SAARC COUNTRIES INSTITUTED BY CANCER AID SOCIETY
Cancer Aid Society invites Application / Nomination from Doctors,
Paramedical Staff and Social Workers with demonstrative leadership in the field
of Palliative Care for the Cancer Patients from India, Bangladesh, Bhutan,
Nepal, Pakistan, Afghanistan and Sri Lanka.
HOW TO APPLY
Apply through online form
along with the references and verifiable evidences to be sent in one email to
[mailto:palliativecare@xxxxxxxxxxxxxxxxxxxxxxxxx] (media coverage/ pictures) in
order to identify the leadership of the applicant/ nominee.
_Last date of Application is 24.00 Hrs. (India Time) of 15th October
Palliative Care Award 2017 of Rs. 1,00,000/- will be presented at the
25th International Conference of the Indian Association of Palliative Care
[http://www.iapcon2018.com/] in February 2018 to be held at AIIMS New Delhi
Cancer Aid Society [http://canceraidsocietyindia.org/] is an NGO in
Special Consultative Status with United Nations ECOSOC, working across India
since 1987 on Palliative Care, Advocacy, Prevention and Control of Tobacco,
Cancer and other Non Communicable Diseases.
IAHPC SEEKS SENIOR EDITOR FOR MONTHLY NEWSLETTER
The International Association for Hospice and Palliative Care (IAHPC)
is seeking a skilled Senior Editor for the organization’s monthly Newsletter.
The IAHPC Newsletter (NL) covers topics related to the progress,
challenges, resources, solutions and opportunities for the advancement of
palliative care and hospice care around the world. The NL is published
electronically before the 10th of every month on the IAHPC website. A shorter
version is also emailed to approximately 8,000 people across the world with
links to each article on the website.
For a complete job description, please visit:
Interested candidates, should send a copy of their CV, an example of
previous work, salary requirements, and a cover letter including a statement
explaining their interest in the IAHPC and this position. The materials should
be sent to: Liliana De Lima, Executive Director at ldelima@xxxxxxxxx
For more information about the IAHPC, please visit
TO THE SACRED MEMORY OF DR ELISABETH KüBLER-ROSS
24 August marked the death anniversary of Dr Elisabeth Kubler-Ross, the
celebrated American psychiatrist who transformed “death, the enemy” to “death,
the inevitable consequence of life”. Her seminal work on the five stages of
grief has allowed clinicians to help people struggling from losses.
On that day, Red FM radio channel at Trivandrum dedicated several hours
to Kubler-Ross anniversary and its message of end of life care. Listeners got
inspiring words of compassion interspersed with popular music.
Pooja Kashyap, a journalist-turned-artist who has already presented
three solo exhibitions in Calicut, Kannur and Payyannoor in the recent past,
commemorated the day with the opening of her art exhibition, _Celebrating
Life_, at Russian Cultural Centre at Trivandrum. DGP Lokanath Behra was the
chief guest at the event. 30% of the proceeds of the sales go to supporting
care of cancer patients through “Art Can Care”.
“My two cousins, a civil servant and a doctor, died of cancer at a very
young age and it still haunts me. It is also an ode to them. It is festive
season in Kerala and I think it is the best time to do something for the
underprivileged,” Pooja Kashyap said. _Read the report in The Hindu._
LIVE, SO YOU DO NOT HAVE TO LOOK BACK AND SAY “GOD, HOW I HAVE WASTED MY LIFE!”
Please read the latest newsletter from Elisabeth Kubler-Ross foundation
[http://www.ekrfoundation.org/current-newsletter/] . You might find it
Please don’t miss the EKR quotes on the website.
DEAF TO THE ACHIEVEMENTS OF THE DEAF
On August 1, _Times of India_ reported
that though the Indian Deaflympics contingent won five medals at the 2017
Deaflympics held in Samsun, Turkey (July 18th to 30th), there was hardly anyone
at the airport to welcome them back with cheers.
Compare that with the milling crowds that welcome back a cricket team
after an international victory.
It is easy to blame it all on the sports Ministry or the Sports
Authority of India; but we would like to ask, where were we all?
Hubert Humphrey said, “The moral test of a society is how that society
treats those who are in the dawn of life…the children; those who are in the
twilight of life…the elderly; and those who are in the shadows of life…the
sick, the needy, and the handicapped.”
Now let us judge ourselves.
20 YEARS AFTER HER DEATH, DIANA’S LEGACY OF CARE LIVES ON
The work of Diana, Princess of Wales, relieved the pain and suffering
of thousands of people with incurable illness around the world.
During her lifetime, Diana, Princess of Wales, was dedicated to
improving the lives of the most disadvantaged people in the UK and
internationally. She used her high profile to raise funds and awareness for
critical but challenging and stigamatised issues such as those who were living
with life-threatening illness such as HIV and AIDS.
Functioning between 1997 and 2012, The Diana, Princess of Wales
Memorial Fund continued the Princess’ humanitarian work in the UK and overseas.
One area of focus was the need for palliative care – holistic care to treat
avoidable pain and suffering of people with serious illness and their carers.
20 years after her death, hospice and palliative care programmes, organisations
and services supported by the Diana Princess of Wales, Memorial Fund continue
to bring comfort and hope to those suffering around the world – irrespective of
what the illness is.
The Diana, Princess of Wales Memorial Fund was ahead of its time in
supporting a holistic, patient and family centred approach to care, encouraging
community based models in countries such as Kenya, Malawi, South Africa and
_Read the complete press release
from Worldwide Hospice Palliative Care Alliance (WHPCA)._
Thank you, Kate Jackson, for bringing this to our attention.
A HEART-WRENCHING STORY FROM TRIPURA
_Pallium India’s Nursing Consultant, Jaikrishanan, writes:_
We concluded a 5-day home based palliative care training for doctors,
nurses, pharmacists and multi-purpose worker (MPW) in Tripura last week. We, a
project officer and three trainers – Dr. Vidya Viswanath from Vishakhapatnam,
Andhra Pradesh, Dr. Iqbal from Silchar, Assam and I travelled from Trivandrum,
Kerala to train palliative care teams from all eight districts of Tripura.
Nurse Bishwajeet shared with us a heart wrenching story that describes
the dire need of palliative care in our society. In one of the home visits, the
palliative team reached the patient’s house and found her with a knife in her
hand and blood oozing out of a wound on her breast where the fungating ulcer of
the breast cancer was causing excruciating pain. The family had isolated her
and she was trying to kill herself. With no pain relief, a fungating ulcer and
maggot-infestation, killing herself seemed the only escape for her. At the age
of 42, she had attempted to kill herself earlier also by jumping into the river
but the villagers had saved her. Her family had isolated her from the
household. She was put up in a room away from the main house with separate
utensils for her food. With the isolation and deteriorating health, suicide
becomes an obvious choice to a lot of our patients.
The district palliative care team removed almost 200 maggots from her
wounds, provided medicines and counselled her. Then they took her to the RCC,
Agartala and provided pain relief with morphine. After the treatment in RCC,
she was able to walk around. The family had left the patient alone in the
hospital. With the intervention of the palliative care team, they took her
Pallium India’s new initiative, partnering with Regional Cancer center
of Agartala and the National Health Mission (NHM) of Tripura hopes to bring
about a positive change for a lot of such people.
It is many years since we started working with RCC to establish the
state’s first palliative care center and we are proud of this new state-wide
50 YEARS OF ST. CHRISTOPHER’S HOSPICE
Thank you David Oliviere for informing us about this historic event:
“I was invited to the 50th Anniversary service in Southwark Cathedral,
London, to celebrate the 50 years of the founding of St Christopher’s Hospice.
50 of us were chosen to carry a candle in the procession marking each of the 50
years and representing a different strand of palliative care. The service ended
with 50,000 petals drifting down for each of the patients cared for over the 50
years and a moment to reflect.”
St. Christopher’s Hospice was established in 1967 by Dame Cicely
CORDOVA PUBLIC SCHOOL HONOURS ASHLA RANI AND BABU ABRAHAM
Cordova Public School Trivandrum, a school with a heart, has already
been involved in supporting palliative care. They are now gearing up to more
organised activities which were inaugurated at an elegant function on 4th
At the event, the school honoured Ashla Rani, Kerala Youth Commission’s
Icon of the year 2017
[http://palliumindia.org/2017/07/ashla-rani-wins-youth-icon-award-2017/] , and
Pallium India’s Senior Advocacy Manager Babu Abraham, who has been doing
phenomenal work in palliative care awareness.
Best wishes for your activities, students, staff and management of
Cordova school, and congratulations, Ashla and Babu.
A JOURNEY INTO PALLIATIVE CARE IN TURKEY: EVERYONE HAS THE RIGHT TO LIVE
Dr Serpil Özsezgin, Palliative Care Health Services, Turkey, explains
the journey that has led to her setting up a mobile palliative care service.
I worked in the ‘Painless Living Centre’ in Izmir, from 2000 to 2010 on
pain management of cancer patients and also Alzheimer’s disease and dementia,
as an Anaesthesiology and Reanimation specialist. I did my best to comfort
patients and alleviate their suffering, and to support bereaved family members.
Based on my experiences of up to 1,000 end-stage cancer cases, I identified
lack of empathy, barriers to opioids, opiophobia and thanatophobia.
Fortunately, I met the ATOME project (Access to opioid medication in
Europe) (1) that sought to overcome the same obstacles to opioid access as I
had been observing for ten years.
Read More on EAPC ->
UNCARED FOR, IN THE SUNSET OF LIFE
The Maintenance and Welfare of Parents and Senior Citizens Act, 2007,
is aimed at ensuring that senior citizens, who cannot fend for themselves, are
provided food, clothing, residence, medical attendance and treatment by their
children or relatives. But not many have actually used the law to claim
maintenance, and in the few instances that cases have been filed, there has not
been much success, a recent study shows.
Read More in The Hindu ->
FOR THE HOMELESS, HAJI CREATES A HAVEN
Lined in a plot beneath lush green trees at Adakkakundu, a remote hilly
hamlet in Kalikavu panchayat, are six single-storey houses. No, these are not
luxury villas built by any known builder. They are houses constructed for
elderly people abandoned by their families.
Led by Bappu Haji, an octogenarian, the villas have been built by a
group of social workers under the aegis of HIMA (Haven of Intimacy and Merciful
Atmosphere). The six villas are now home to 10 people from across the
state.Known for his charity and educational works, Bappu Haji, 85, contributed
three acres of land for these villas, in addition to a huge amount as financial
“We live at a time when a large number of aged people are forced to
leave their homes for a number of reasons,” says Bappu Haji. HIMA functionaries
say Haji’s close affinity to social and political leaders helped him extend a
helping hand to the poor.
Read More in The New Indian Express ->
FROM A ‘TYPICAL’ AUTO DRIVER WHO USED TO BULLY PASSENGERS TO AN EXTRAORDINARY
MAN WHO COMFORTS TERMINALLY ILL PATIENTS
For the last 22 years, since 1995, Soma Shekara Chari’s life has
revolved around caring for terminally-ill patients. Home visits, which include
bathing them, giving them a haircut, shaving the male patients and sometimes
even indulging them with knick-knacks on his own volition, take up a lot of his
But this is not how Shekara, as he’s commonly known, used to be. He was
once, in his own words, the “typical” auto driver who would “bully” passengers,
and at the end of the day, splurge his day’s earnings on alcohol and
Read More in Bangalore Mirror ->
VIDEO OF THE MONTH: HIPPOCRATIC [HTTPS://WWW.YOUTUBE.COM/WATCH?V=O__2HRC2GVY]
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] /
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]
OCT 14, 2017: International conference on Peri-operative Cancer Care at
Jawaharlal Nehru Auditorium, AIIMS, New Delhi. Register:
OCT 23, 2017: 10 days Foundation course in Palliative Medicine for
doctors in Trivandrum, Kerala. Contact: info@xxxxxxxxxxxxxxxx
[http://palliumindia.org/courses/foundation/] Last date to Apply: Oct 10
NOV 7, 2017: Six weeks certificate course in Palliative Medicine &
Palliative Nursing (CCPPM, CCPN) in Trivandrum, Kerala. Register for CCPPM:
Register for CCPN: http://palliumindia.org/courses/ccpn/
[http://palliumindia.org/courses/ccpn/] Contact: info@xxxxxxxxxxxxxxxx
[mailto:info@xxxxxxxxxxxxxxxx] Last date to Apply: Oct 25
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:
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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/
THE UNACCEPTABLE COST OF DYING IN INDIA
_END-OF-LIFE INTERVENTIONS IN INDIA OFTEN AMOUNT TO TORTURE._
DR NAVEEN SALINS, THE HUFFINGTON POST
The 2015 Quality of Death Index report published by the Economist
Intelligence Unit exposed the poor quality of end-of-life care in India. Among
the 80 countries studied, India ranked 74th in the affordability of care at the
end of life. A 2011 Lancet article on healthcare equity in India showed that 39
million Indians are becoming poorer every year due to rising healthcare costs.
Most of these costs are related to aggressive medical interventions at the end
of life. According to a 2014 World Bank report, the government spends less than
2% of the GDP on health and 89.2% of Indians spend out of pocket to meet
healthcare expenses. A review by researchers from the Government Medical
College in Calicut, Kerala, on the increasing out-of-pocket healthcare
expenditure in India showed that there has been a more than 100% increase in
outpatient expenditure and 300% increase in inpatient expenditure in the last
10 years. In India, 5.6% of families manage out-of-pocket healthcare
expenditure by taking out loans.