Care Beyond Cure
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! April 2017 !
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March 31, 2017
CONGRATULATIONS, EVERYONE. PALLIATIVE CARE FINDS A PLACE IN INDIA’S NATIONAL
HEALTH POLICY 2017.
[http://mohfw.nic.in/showfile.php?lid=4275] The Government of India
has announced the National Health Policy 2017
[http://mohfw.nic.in/showfile.php?lid=4275] . We are so happy to note that many
hopes of the palliative care fraternity have found a place in the document.
Some major features relevant to palliative care are:
* Healthcare Spending by the Government would double – to 2.5% of GDP
by the year 2025.
* The objectives mention specifically, “Improve health status through
concerted policy action in all sectors and expand preventive, promotive,
curative, palliative and rehabilitative services provided through the public
health sector with focus on quality.”
* Community or home-based palliative care is included among the
responsibilities of frontline health workers.
* Palliative care is mentioned as 1 essential feature of primary health
* In child and adolescent’s health, district hospitals have been
specifically asked to provide palliative care.
* The policy recognizes the growing need for palliative and
rehabilitative care for all geriatric illnesses and advocates for continuity of
care across all levels.
* It recommends starting specialised nursing training courses in areas
including “palliative care and care of the terminally ill”.
* In primary health care, particularly in urban health care, health and
wellness centres are to be developed and they are to include palliative care.
* Right to healthcare is mentioned as covering ‘a wide canvas,
encompassing issues of preventive, curative, rehabilitative and palliative
healthcare across rural and urban areas’,
* In school health, incorporation of health education as part of
curriculum is mentioned.
* The policy recommends integration of medical and paramedical
education with service delivery systems.
There are some disappointments, however. Representation to the
government regarding the National health policy had also emphasised the need to
include palliative care into the educational curricula of medical, nursing,
pharmacy and social work courses. We had also requested for refining the legal
and regulatory system to improve access to opioids for pain relief. These have
not found a specific place in the policy document.
Long Way to go!
Here are the various evaluations that appeared in the media:
The Wire: India’s New National Health Policy is Ambitious on Paper But
Indian Express: What is National Health Policy 2017: Everything you
need to know
The Hindu: National health policy 2017: A road map for health
First Post: India’s new national health policy is just a repackaged
version of the 2002 plan
“ISN’T PALLIATIVE CARE DEPRESSING?”
Here is one more answer to the frequently asked question to palliative
care practitioners, “How can you do this work year in and year out? Don’t you
Dr Vidya Viswanath, palliative care physician and Pallium India’s
fellow traveller from Vizag writes:
“Every day brings a new challenge, a new thought and new frustrations
in dealing with the huge gap between demand and supply. I saw 3 terribly
disfigured head and neck cancer patients with maggots, with HIV and zero social
support in two days. Just when I was in despair, I also had the privilege of
taking one of our old patients with Ca Buccal mucosa to the hospice in our bus
and then my car. He walked in and had his entire family around and died
serenely the same night. I felt I was seeing Buddha in his disfigured face. And
that is how I try to find my balance.”
SUMMER CAMP FOR CHILDREN OF OUR PATIENTS
Every year during the school vacation, Pallium India organizes a summer
camp for our patients’ children, where they get to play, to learn and to have a
lot of fun. Pallium India supports the educational needs of 300+ such children.
This year’s summer camp is organized from 27th to 29th April, 2017, at
We request your assistance in making this program as enjoyable for them
as possible – considering that with illness and death in the family, they do
not get to have a lot of fun in regular life.
_PLEASE DONATE TO US_, and let us know that it is for “Kuttikkoottam
Summer Camp”. For details on how to donate, please visit:
http://palliumindia.org/donate/ [http://palliumindia.org/donate/] Contact us if
you have queries: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx] /
*Donations to Pallium India are exempted from income tax.
NO REHABILITATION FACILITIES IN MAJORITY OF THE STATES
Even as the Mary Varghese Institute of Rehabilitation at CMC, Vellore,
completes 50 years of service, providing treatment and rehabilitation to
patients with spinal cord injury, brain injury, stroke, amputations and
cerebral palsy, physical medicine and rehabilitation (PMR) still remains
neglected in India.
Recently, it took another doctor, one with 70% locomotor disability, to
point out that despite nearly two decades since a directive of the Medical
Council of India to the effect, there still weren’t any departments of PMR in a
majority of the states, including Delhi.
In a petition filed before the chief commissioner of persons with
disability, which comes under the Union Ministry of Social Justice and
Empowerment, Satendra Singh, an associate professor of physiology at the
University College of Medical Sciences and G.T.B. Hospital in Delhi, noted that
despite several guidelines to the effect, “PMR departments are non-existent or
scanty in medical colleges of many states”.
Read the report in The Wire: When It Comes to Rehabilitation
Facilities, India’s Medical Community Remains Grossly Lacking
IN A FIRST, TRIVANDRUM CENTRAL RLY STATION INTRODUCES PORTABLE RAMPS,
_Times of India_ "
Moved by a harrowing incident which occurred in the life of former Miss
Wheelchair India runner-up Virali Modi while using the services of the Indian
Railway, Thiruvananthapuram Central Railway station has come up with an
innovation which is sure to bring smile on the faces of the physically
Thiruvananthapuram Central Railway Station has become the first station in the
country to introduce a ramp and wheelchair facility for the physically
challenged based on a offical order from Southern Railway.
“I have been groped and manhandled three separate times by porters.
They were helping me board the train because Indian trains are not wheelchair
accessible. I am a disabled woman living in Mumbai who loves to travel,” reads
the petition of the #mytraintoo campaign by Virali Modi, who was the Miss
Wheelchair India runner-up in 2014, motivational speaker and a model. She has
been paraplegic since she was 14. This petition which has already gathered a
support of nearly 10,00,000 people, was brought to the notice of the Southern
Railways by former Thiruvananthapuram division DRM Sunil Bajpai.
Read More ->
DEVELOPMENTS IN PUDUCHERRY
A team from the Trivandrum Institute of Palliative Sciences consisting
of Nandini Vallath and Sumitha T. S., visited Puducherry on 22 March and 24
March, 2017, to mentor and support the ongoing activities in the region. Dr
Dewan Roshan Singh, Associate Professor, Dept of Anaesthesiology, Mahatma
Gandhi Medical College & Research Institute (MGMCRI), Anu Thelly, the nursing
consultant, at MGMCRI and Dr Srikanth, Professor of Community Medicine at Sri
Venkateshwaraa Medical College Hospital and Research Centre (SVMC), are the
local champions who organized the events and made this visit a success.
This was a follow up visit for mentoring and monitoring of the
palliative care activities initiated there with funding from the Tata trust,
after faculty from SVMC, Dr Srikanth, completed training at TIPS, Trivandrum.
The palliative care service in the institution has taken off since then. The
activities are also gradually getting integrated into the clinical settings and
the professional community, through a committee representing all specialities
within the institution.
The team successfully conducted the ‘follow up workshop on Opioids
availability’ at the MGMC on the 23rd of March. All significant stakeholders
involved in improving opioid access within Pondicherry participated in this
event. They included the health secretary, Officials from Excise, and health
department, the senior faculty from local medical college hospitals and the
regional palliative care champions. The meeting concluded with specific action
points to ensure that the situation of access and availability to pain relief
improves for the region in the near future.
In addition, Dr Nandini gave an invited presentation on “Pain
Management in Palliative Care” at the SAF guest lecture series at MGMC. Anu
Thelly, and Sumitha T. S., Project Executive, Pallium India, interacted and
sensitized the nursing students at SVMC on palliative care topics relevant to
their future practice.
_(In the picture: Pallium India team with the SVMC team)_
WHO TORTURES THE DYING? THE FAMILY OR THE DOCTORS?
(Photo by Ruth Fremson/The New York Times)
A news report by Sophie Borland published recently in _the Daily Mail_
discusses how hundreds of thousands of elderly patients are being forced to
endure unnecessary and potentially harmful treatment at the end of their lives.
A global study, which involved 1.6 million patients across eight
countries, found that families cause loved ones to suffer at the end of life by
begging doctors for unnecessary treatments, including elderly patients, who are
being forced to endure unnecessary and potentially harmful treatment at the end
of their lives.
Up to one third are given chemotherapy, dialysis, blood transfusions or
CPR in their final weeks, which are of no benefit and only serves to prolong
suffering. Researchers say family members are unwilling to let loved ones go
and pressurise doctors into performing ‘heroic interventions’, which denied
A review by researchers at the University of New South Wales, in
Sydney, estimates that up to 38 per cent of patients are put through
unnecessary treatment at the end of their life. This includes radiotherapy,
scans, resuscitation or feeding tubes which doesn’t extend their lives and only
Dr Magnolia Cardona-Morrell, whose research is published in the
International Journal for Quality in Health Care, said that as a result, many
patients were ending their lives in operating theatres or intensive care units
rather than at home.
But we ask: Is it fair to blame the families? Or does the problem point
to grossly inadequate communication and counselling of the family? Naturally
they would be anxious and grieving, would they not? Don’t we need to have a
more robust health care system that would help the family to come to a state of
“Doctors also struggle with the uncertainty of the duration of the
dying trajectory and are torn by the ethical dilemma of delivering what they
were trained to do, save lives, versus respecting the patient’s right to die
with dignity.” She also highlighted a culture of ‘doing everything possible’
even though it may not benefit the patient. Her research looked at 38 previous
Simon Chapman, Director of Policy and External Affairs, National
Council for Palliative Care said: “We all die one day, and we need to challenge
the idea that death is somehow a medical failure.”
Read the full report: Families cause loved ones to suffer at the end
of life by ‘begging doctors for unnecessary treatments’
FOR WHAT GOOD IS THE SCIENCE OF PALLIATIVE CARE WITHOUT THE ART?
“Madam, palliative care is an art,” says Moulana, Chairman of Thanal
Charitable Trust, to Dr Ann Broderick who visited his palliative care facility
in Lakshadweep, off Kerala Coast.
Dr Ann Broderick is a volunteer-consultant in Palliative Medicine from
University of Iowa. She writes in her blog about her visit to the joint
palliative care project that Pallium India had initiated with Thanal Charitable
Trust, and taking part in their home visit programs, and a moving experience
she had: Is a razor in your palliative care toolbox?
PRECIOUS GIFTS! [HTTP://PALLIUMINDIA.ORG/2017/03/PRECIOUS-GIFTS/]
Thank you Odette! Thank you Rotary Suburban! What precious gifts!
You know how costly western text books are. We need them; but can’t
afford them. But look at the cartons and cartons of books that we now have.
They came as a gift from Dr.Odette Spruyt of Peter McCallum Cancer Centre,
Melbourne. Rotary Club in Melbourne and Rotary Suburban Club of Trivandrum took
the responsibility of sending and receiving them.
Dear Odette, you have been a friend of Palliative Care in India for 2
decades now. You have done so much for our suffering people and you continue to
work wonders. Thank you very much.
Mr. Jose Pampackal, President, Mr.Subramoniya Sarma N., Secretary and
Dr. N.R.U.K. Kartha of Rotary Suburban handed over the gift to us on March 7th,
2017. Rotary Suburban, we look forward to continuation of your support.
ELISABETH KüBLER-ROSS IS HERE WITH US IN PALLIUM INDIA!
Thanks to the generosity of Elisabeth Kübler-Ross Foundation
[http://www.ekrfoundation.org/] , its chief functionary Dianne Gray and Ken
Ross (Elisabeth’s son), we have received a gift of numerous precious books to
our Bruce Davis Education Centre at Trivandrum Institute of Palliative Sciences
TIPS was established in 2006 and acts as the flagship of Pallium India,
delivering and demonstrating quality palliative care and education. Doctors and
nurses from many countries, but particularly from all parts of India, come here
to undergo our six weeks certificate courses.
The library is for the use of the trainees as well less for our own
staff and volunteers. The process of cataloguing of the new arrivals is nearing
completion. The revamped “Kübler-Ross Pallium library” will soon be ready. It
will have a separate section on EKR publications.
LAW, AND HOW WE CHANGED IT…
What does it take to change an archaic and draconian law that violates
human right to life and death with dignity?
Here are the ingredients of a recipe:
* Enough courage of conviction not to be afraid of the enormity of the
* A lot of study to understand the matter at depth;
* Getting together of people of different essential abilities and
* Persistence despite odds.
Read how over a 20 year period, the Narcotic and Psychotropic
Substances (NDPS) Act was amended: Civil-Society Driven Drug Policy Reform for
Health and Human Welfare-India [https://www.ncbi.nlm.nih.gov/pubmed/28042065]
written by Vallath N, Tandon T, Pastrana T, Lohman D, Husain SA, Cleary J,
Ramanath G, Rajagopal MR, and published in the Journal of Pain and Symptom
DO YOU HAVE AN OLD LAPTOP IN WORKING CONDITION, THAT YOU NO LONGER USE? WOULD
YOU BE INTERESTED TO DONATE IT TO US?
Pallium India has a team of second-line volunteers and staff members
who assist with our activities from the back-end. Some of their work is
hindered because of the lack of sufficient number of laptops.
If you are interested to support us by donating old laptops that can be
used for Internet access and basic applications, please contact us. We would be
very grateful. Write to us at: info@xxxxxxxxxxxxxxxx
[mailto:info@xxxxxxxxxxxxxxxx] or call us at 9746745497
DR. M. R. RAJAGOPAL RECEIVES HEALERS OF INDIA AWARD
Pallium India Chairman Dr. M. R. Rajagopal received the inaugural
‘Healers of India’ Award in the Dr Prathap Reddy’s Selfless Service Award
category. The recognition was conferred on Dr. Rajagopal by Apollo Group of
Hospitals Founder Dr. Prathap C Reddy during a Healers of India award ceremony
held in New Delhi on March 29.
The award has been instituted by Network 18 in association with Apollo
Hospitals to celebrate, recognize and reward rural India’s unsung medical
heroes. Dr. Rajagopal was chosen by a jury consisting of eminent professionals
in the medical field, for his efforts to ensure the rights of palliative care
patients in India.
Expressing his gratitude, Dr. Rajagopal said: “This award will go
towards supporting patients undergoing treatment with Pallium India.” Dr.
Rajagopal urged the media to be the catalytic force in empowering patients and
their families to become partners in the healthcare system.
Kerala won the Healthy State Award, given for maximum improvement in
medical facilities and healthcare infrastructure which has helped in provision
of better healthcare services over the last 2 years.
‘Healers of India’ is an initiative to identify and honour the unsung
heroes who are contributing their best and working tirelessly to ensure better
healthcare for India’s rural population. The campaign focussed on rural India
to bring those unsung heroes into mainstream media who work silently and are
rarely appreciated for their humungous effort.
DR M. R. RAJAGOPAL RECEIVES NAVJEEVAN INSPIRATION OF THE YEAR AWARD
Dr M. R. Rajagopal, Chairman of Pallium India, has been conferred the
Navjeevan Inspiration of the Year award by Navjeevan school, Nalanchira,
Trivandrum. The award, consisting of a plaque and ₹50,000, was handed over to
Dr Rajagopal by K. Muralidharan MLA, at a function in Trivandrum on March 23,
The Navjeevan Inspiration award has been established by the school to
honour value-based social contribution by an individual. In a unique selection
process, students (with the help of their parents) were asked to submit
nominations. Dr M R Rajagopal came first with an overwhelming majority.
While accepting the award, Dr Rajagopal said that the award money will
be used for Pallium India’s patient care activities.
Thank you, students and staff of Navjeevan school, for this honour.
SCHOLARSHIP PROGRAM FOR PALLIATIVE CARE CERTIFICATE COURSES
Indo American Cancer Association (IACA), in association with TIPS (an
organ of Pallium India), offers scholarship to undergo 6 weeks residential/non
residential palliative care training course at selected centres in India.
Scholarship is offered for the CCPPM and CCPN courses beginning on June
5, 2017 at the following centres:
* MNJ Institute of Oncology, Hyderabad, Telengana. Contact:
* Trivandrum Institute of Palliative Sciences, Trivandrum, Kerala.
Contact: education@xxxxxxxxxxxxxxxx [mailto:education@xxxxxxxxxxxxxxxx]
TYPE OF SCHOLARSHIP
* Depends on performance of the candidate in the telephonic interview
conducted by IACA interview panel.
* Full support to the outstation candidates, including travel,
accommodation, canteen, local travel, fees with cap on all items.
* For local candidates, support for registration fee is provided.
PLEASE NOTE: Last date to send in applications: 1ST MAY, 2017
For more information on all our courses, please visit:
IAHPC TRAVELING SCHOLARSHIPS TO IPHPC CONFERENCE IN CANADA
The International Association for Hospice and Palliative Care
[http://hospicecare.com/home/] (IAHPC) announces that it will provide the
* TEN (10) SCHOLARSHIPS to support the travel of palliative care
workers to attend the 5TH INTERNATIONAL PUBLIC HEALTH AND PALLIATIVE CARE
CONFERENCE [http://www.iphpc2017.com/about/] . The conference will take place
in Ottawa, Canada on September 17-20, 2017. DEADLINE TO APPLY: MAY 15, 2017
In order to apply for a traveling scholarship, applicants must be
current members of IAHPC and should not ave received grants from IAHPC in the
past 3 years. (If you wish to apply and are not an IAHPC member, you may join
by clicking here [http://hospicecare.com/join-iahpc/] .)
PREFERENCE WILL BE GIVEN TO APPLICANTS:
* Living in Lower, Lower-Middle and Upper-Middle income categories as
per the World Bank income classification data. See here
* Applicants who have been IAHPC active members for two or more
* Actively working in palliative care.
* Graduated less than 10 years ago from specialty or medical school
* Have an accepted abstract for poster / oral presentation. Proof of
acceptance of the poster will be required.
More detailed information about the application process and the online
form are available at the IAHPC website here
[http://hospicecare.com/about-iahpc/iahpc-programs/traveling-scholarship/] . If
you need information on how to apply please contact Genevieve Napier, IAHPC
Manager of Programs and Projects at gnapier@xxxxxxxxx
VACANCY: MEDICAL SOCIAL WORKER AT PALLIUM INDIA, TRIVANDRUM
Organization: Pallium India [http://palliumindia.org/]
Job Title: Medical Social Worker
No. of Requirements: 2 (Nos.)
Nature of Job: Permanent – Full Time
Qualification: Masters in Social Work (Full-Time) from a recognized university
Experience: Fresher /1-2 years
Place of Job: Pallium India Trust, Arumana Hospital Building, Eanchakkal-West
Fort Road, Vallakadavu P.O., Trivandrum
* Evaluation and management of problems of patients and families
requiring palliative care with particular attention to social issues.
* Auditing of palliative patient care with intent to identification of
problems and bringing up possible solutions to problems to the attention of the
* Taking part in on-going research activities or initiating need based
research programs with the approval of scientific committee.
* Liaising with the Government departments for getting Scheme related
information for the patients.
* Taking steps to publish reports/data from audits or research programs
with the objective of improved patient care anywhere.
* Maintaining regular reporting to superior officials as advised in the
* Attending (first) and organizing (later) educational programs on
behalf of Pallium India.
* Maintaining good relations with clients, donors, well-wishers and
staff during telephone conversations, email contacts, personal contacts or any
Interested candidates can send detailed and updated CV to
hr@xxxxxxxxxxxxxxxx [mailto:hr@xxxxxxxxxxxxxxxx] with “APPLICATION FOR MEDICAL
SOCIAL WORKER” as subject. For more details, please contact:
hr@xxxxxxxxxxxxxxxx [mailto:hr@xxxxxxxxxxxxxxxx] / +91 9746745501
_For more vacancies, visit our Careers
VACANCY: PALLIATIVE CARE PHYSICIAN AT PALLIUM INDIA, TRIVANDRUM
Organization: Pallium India [http://www.palliumindia.org]
Job Title: Palliative Care Physician
No. of Requirements: 2 (Nos.)
Nature of Job: Permanent – Full Time
Place of Job: Pallium India Trust, Arumana Hospital Building, Eanchakkal-West
Fort Road, Vallakadavu P.O., Trivandrum
QUALIFICATION: M.B.B.S (Full-Time) from a recognized university
As a Palliative Care Physician,
* Provide symptom management, pain relief and supportive care for the
patient in inpatient care, outpatient clinic and home based care.
* Facilitate clarification of patient and family goals of care.
* Facilitate information sharing and decision making regarding patient
* In addition to providing expert symptom management, as a palliative
care physician you need to devote time to intensive family meetings, ensure
coordinated care across health care settings, link patients and family members
to support groups and other services and improve access to information so
patients can make confident, well-informed decisions about their care.
* Consult with fellow physicians and the interdisciplinary team in
establishing a written plan of care at intervals specified in the plan.
* Adhere to the practice of confidentiality regarding patients,
families, staff, and the organization.
* Assist in the development of standards of care and practice.
* Participate first and organise academic sessions and training
programs for skill development.
* Facilitate and participate awareness campaigns in the community.
* Collaborate with similar Palliative care organisations and oncology
community to create awareness and advocate for palliative care in India and
* Undertake and guide research and projects in the field of Palliative
* Any other duties assigned by the reporting authorities.
Interested candidates can send detailed and updated CV at
hr@xxxxxxxxxxxxxxxx [mailto:hr@xxxxxxxxxxxxxxxx] Please mention “APPLICATION
FOR PALLIATIVE CARE PHYSICIAN” in the subject. FOR MORE DETAILS, CONTACT: +91
_For more vacancies, visit our Careers
ANOTHER STEP TOWARDS INTEGRATION OF PALLIATIVE CARE IN HEALTH CARE
“What care pathways does the Indian law permit for a very sick patient
with an advanced disease, when there is no scope for curative treatment?”
The question was asked by a doctor from the audience, to Dr Nandini
Vallath, Pallium India’s consultant (in the picture) at the Association of
Physicians of India – API conference in Alappuzha held on the 25th of February
These and many other aspects of bringing in best care practices
surfaced during the invited presentation on “Relevance of Palliative Care
approach in routine clinical practice” by Dr Nandini. While she described the
current legal situation for the terminally ill in India, and explained about
empowering the patient through information and shared decision making as the
crucial focus in such situations, a senior professor of Medicine from the
audience elaborated on the point further by relating a patient instance, where
a decision on whether to aggressively intervene or introduce comfort care could
be solved through direct communications, and by providing clarifications. Both
emphasized regular repeated information sharing with patient / family as the
way forward for appropriate decisions to emerge in complex situations.
The API conference aimed to update the knowledge and competencies of
the physicians through enlightening presentations from oncologists,
pulmonologists, and nutritionists and other specialists on different relevant
areas of care. There was enthusiastic participation from the post graduate
students as well, due to the interesting prizes for Quiz programs which were
held at several phases during the conference.
Congratulations to Dr. Chandni. R, Hon. Secretary, API Kerala Chapter
and Dr. Suma T K Professor of Internal Medicine, Alappuzha Medical College for
bringing palliative care into mainstream academics of physicians – the anchor
speciality in healthcare.
BELIEVE THE PATIENT ABOUT HER PAIN
[http://www.tandfonline.com/toc/ippc20/current] “Even when we
suspected that a part of her pain could be psychological, we never doubted that
her pain was genuine,” writes Dr M. S. Biji, a palliative care physician, about
a 19-year old named Jeny who was admitted to her hospital with cancer.
Jeny had excruciating pain, but she was not responding to morphine,
which she was taking every 4 hours. Even with increased doses of morphine, her
pain was not getting better and she was sweating all the time. For a while,
this made some members in the treating team wonder if she really did have pain.
Could it be possible that Jeny had some underlying depression making
her feel severe pain? Emotional issues could greatly contribute to pain and
that kind of pain would be unlikely to respond to opioids. But on careful
observation, they came to the conclusion that poor control of pain was perhaps
caused only by inadequate dose of morphine. So they kept increasing the dose of
morphine, and sure enough, Jeny’s pain came under control.
Dr Biji observes: “Pain in cancer, in many instances is under-diagnosed
or under-treated. Failure to assess pain is a major factor leading to
under-treatment.” When the palliative care team believed the young woman’s
report of her pain, they were able to arrive at the right combination of
medicines to treat her pain, and to relieve her intolerable suffering.
Please read the complete article, _Believing Jeny About Her Pain_
[http://www.tandfonline.com/doi/full/10.1080/15360288.2016.1274811] , published
in the Journal of Pain and Palliative Care Pharmacotherapy.
The Journal of Pain and Palliative care Pharmacotherapy
[http://www.tandfonline.com/toc/ippc20/current] 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
EAST COAST ROAD AND ITS END
_Sumitha T.S., Project Executive, Pallium India writes about her recent
visit to Puducherry
My first official visit on behalf of Pallium India was to the once
French colonized serene shore of Puducherry. I arrived at Chennai by flight and
sat in the airport waiting for my colleague to arrive in another flight. We
would have to take a cab from there to Puducherry. Indians in Chennai made me
feel that it is the most caring and safest place; I should admit the fact that
I have not travelled much but isn’t true to say not at all.
After she arrived, we located our cab driver and we started our journey
through the east-coast road. On the way my colleague asked him whether he had
ever seen any cancer patients. He replied that his previous employer’s sister
suffered from cancer. He had worked with them for more than a decade and so he
knew the story but not in detail. She had lost her husband at a young age;
raised two children and got them married. After diagnosis, she lived with her
sister, the cab driver’s employer. No health care workers visited her at home
but she never used to show her pain to others. That was her way! She is now no
Our journey ended with our visit to the palliative care physician, Dr.
Srikant. He had another story to tell. A lady with percutaneous endoscopic
gastrostomy feed due to cancer hypopharynx came to him for euthanasia. Let us
leave these medical terms and use simple English: a woman in her fifties came
to him with the request to kill her or to facilitate a comfortable death as
early as possible. She could not take food orally as she was suffering from
cancer and was taking her feed through a not so acceptable route. She was
suffering from severe pain and breathlessness during her meeting with
Dr.Srikant and his team, and was well aware of her diagnosis and prognosis. The
matter that was haunting her most was not physical; her care giver was her
daughter who dropped out of school when she was in eleventh, to look after her
mother. She was feeling guilty for ruining her daughter’s life – by not dying.
Her symptoms responded to treatment, pain killing medications or analgesics
which most of the palliative care physicians are fighting for and its adjuvants
were given. Tracheostomy was done for breathlessness. She was fond of _Mysore
pak_ and and _dosa_ and expressed her desire to have them during her three-week
stay in Sri Venketeshwara Medical College Hospital, Puducherry, where Dr.
Srikant and his team practised palliative care. As she could not swallow, the
palliative care team took pieces of her favorite food items and allowed her to
keep it in her mouth for some time and then spit it out. Her taste buds and her
inner soul would have been happy at that moment. Is it happiness alone? She
also expressed her dream to see her daughter as a doctor. The palliative care
team took a photo of her daughter wearing coat and stethoscope so that the
mother could see what she would look like.
During discharge, they provided a pedal type suction apparatus and the
daughter was taught to take care of the tracheostomy. Periodic follow up was
done over the phone. After two months, when the team visited her house, she
recognized them despite her weakness and asked her daughter to serve them
juice. Imagine, a sick lady recognizing her health care providers during her
end stage, laughing at them and offering them juice, that too through actions
or signs. What other appreciation does a health care provider need to be happy
and satisfied? One week later, the news of the departure of that loving mother
reached the team. Now, her daughter has rejoined school to make her mother’s
dream a reality. The “nanban team” of Sri Venketeswara deserves a loud round of
It was time to return home. Again, through the east-coast road back to
Chennai airport. I expected it to be a lonely journey as my colleague had left
the day before. But the driver started talking to me. He was no different from
other Tamilians I have heard so much of. He started his talk with movies, Basha
re-release and so on. But I felt proud that he accepted Mohan Lal and Malayalam
story lines as well. I started calling him “Saitu paappa” as his name was
synonymous with ‘rich man’. He told me that he had been the school topper in
tenth grade, but had met with an accident in the twelfth. He was in bed for
about a year with fractures and then could not continue his studies as his
mother was ill by the time he recovered. In Puducherry, nobody diagnosed his
mother’s disease, but one clinic referred her to CMC, Vellore, where she was
diagnosed with blood cancer. She was treated there for a few months but passed
away. After that, his family – father, sister, and two younger brothers – lived
in different places for a few years and were unable to cope after his mother’s
This made me wish there were more “nanban teams” in different parts of
the world; the world would indeed have been a more delightful place to live in!
VIDEO OF THE MONTH [HTTP://PALLIUMINDIA.ORG/2017/03/VIDEO-OF-THE-MONTH/]
Ashla Rani’s presentation on “WHAT I LEARNED AS A RECEIVER AND PROVIDER
OF PALLIATIVE CARE” [http://palliumindia.org/2017/03/video-of-the-month/] at
IAPCON 2017, Coimbatore.
WATCH NOW >> [HTTP://PALLIUMINDIA.ORG/2017/03/VIDEO-OF-THE-MONTH/]
VIDEO: ACCESS TO OPIOIDS
Pallium India’s March 2017 newsletter
[http://palliumindia.org/newsletter/] had opened with an announcement of ten
international palliative care organizations
collaborating to urge governments to ensure balanced access to opioids for
pain relief. To this, Mr Yau Weng Wai of Asia Pacific Hospice Palliative care
Network (APHN) writes, “Here’s a 5 minute film to complement the 1st article in
the Pallium India newsletter, see http://lifeaskeddeath.com/opioid-access/
Indeed, that’s a brilliant visual description of the problem in just
about 5 minutes. You wouldn’t regret watching it. And to those who still wonder
whether it would not increase the risk of abuse of opioids, let us assure you,
many countries including several developing nations have ensured (notably, the
south Indian state of Kerala) have demonstrated that with some basic
precautions, it is indeed possibly to have the balance – making opioids
available for pain relief, at the same time preventing diversion.
Mr Weng Wai has also recommended watching another 5 minute film called
“ Reaching Policy Makers [http://lifeaskeddeath.com/policy/] ” which focuses on
the integration of palliative care into government run health systems.
Palliative care integration is necessary in all hospitals
“It is absolutely essential that the government should have a policy to
make life liveable for people with diseases because what is happening now is
cruel. A policy in that cupboard or in that computer doesn’t mean anything in
our country till it has guidelines and strategy for implementation and that is
where the gap lies. Just having the written policy is meaningless unless there
is concurrent educational professional.”
In an interview with ETHealthworld
, Dr M R Rajagopal talks about the need to improve the access and knowledge of
palliative care among the masses in India:
PLEASE WATCH THE VIDEO >>
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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.
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Write to us: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx] /
WHEN DRUG POLICY HURTS MORE THAN HELPS
_Kate Jackson, eHospice International_
Screams rent the air as we entered the children’s palliative care
clinic in Kerala, India. Tanvi, a two year old child, was writhing in pain,
with violent muscle spasms. She was now out of intensive care where she had
received artificial life support, but not pain relief.
Her father stood by, helplessness personified. He later confessed that
he had thought about killing the whole family and committing suicide. Tanvi’s
mother had been behaving abnormally for weeks. Her 11 year old sister had left
school. She had lost her childhood and had taken over the role of the mother.
Morphine brought amazing relief to the girl. Not total; but enough for
her to sleep. The child lived for a few months more at home, on morphine.
Her father went back to work, though he had to leave work every two
weeks to travel more than 100 kilometres to collect morphine. Her sister went
back to school and her mother was helped by psychiatric treatment.
Read More ->
MORE FOCUS NEEDED ON PALLIATIVE CARE
_Olinda Timms, Deccan Herald_
The theme of the National Bioethics Conference held recently and
titled, ‘Healing and Dying with Dignity: Ethical Issues in Palliative Care,
End-of-life Care and Euthanasia’ evoked tremendous response from all sections
of the society including health professionals. Care of the dying has not
received its due attention in India despite growing numbers of aged and
terminally ill population.
For the most part, hospice and palliative care is left to
charitable/religious organisations whose dedicated work is limited only by
resource. Very few tertiary hospitals have fully staffed and trained palliative
care departments. A 2010 study ranked India abysmally low, 67 out of 80
countries, in `access to end-of-life care’.
If we are to provide humane choices for the dying, palliative care must
compliment mainstream health services at every level, offering patients the
right to die with dignity. The duty to care for the patient does not end when
clinical interventions prove futile. Dying patients are entitled to basic
physical comfort and freedom from pain, two important pillars of palliation,
and respect of personal choice in refusal of surgery or invasive procedures.
The doctor has a central role in providing compassionate care in end-of-life
Read More ->
CIAL TO FUND PALLIATIVE CARE BLOCK AT GOVERNMENT MEDICAL COLLEGE
_The Times of India_
The government medical college, Ernakulam, will soon get a palliative
care block thanks to the Cochin International Airport Limited (Cial), which
earmarked Rs 10 crore from its corporate social responsibility (CSR) funds for
the purpose. Once the construction of the block is over, the activities of
palliative care unit at the medical college can be vitalized. The CIAL
authorities have entrusted KITCO with the design and implementation of the
Read More ->
ONLY SPECIFICALLY TRAINED DOCTORS TO TREAT CHILDREN WITH DISABILITIES, SAYS MCI
The Medical Council of India’s directives are intended to prevent
children from undergoing unnecessary procedures at the hands of incompetent
In order to ensure that children with disabilities are not made to go
through medical and surgical interventions where they are not required, the
Medical Council of India (MCI) has decided to abide by instructions from the
Chief Commissioner for Persons with Disabilities (CCPD) and has said that
doctors who are not trained in rehabilitation should limit their treatment of
children with disabilities only to their medical illness or disease.
The MCI’s order, issued by its secretary, has been issued in accordance
with the CCPD directing the body to provide appropriate instructions in 2008.
Read More ->
MORE HELP TO CHRONIC KIDNEY PATIENTS
A combined meeting of professionals and volunteers of Pain and
Palliative Care Society, Thrissur, and nephrologists have decided to work
together to improve the quality of life of chronic kidney patients.
The meeting stressed the importance of integrating principles of
palliative care in the management of chronic kidney patients. It is reported
that 50% of kidney patients are suffering from pain and 80% of them do not
receive any analgesics. In addition to the chronic pain, these patients suffer
from a host of other physical problems and psycho-social issues along with
Read More ->
EUTHANASIA, ASSISTED SUICIDE AND PALLIATIVE CARE — A NEVER-ENDING STORY
_Professor Lukas Radbruch, IAHPC Newsletter_
In the past four years I have been continuously involved in the
discussion on euthanasia and assisted suicide. First, in the board of the
German Association for Palliative Medicine as we struggled to find a clear
position, then in an extensive consensus process for the European Association
for Palliative Care (EAPC), which ended in the EAPC white paper on euthanasia
and physician-assisted suicide (PAS), and now in the IAHPC position paper.
The underlying attitude in all groups is the same (and this has been
confirmed in the EAPC consensus process for the European national
associations): palliative care neither hastens nor postpones death, and thus
practices related to euthanasia and assisted suicide should not be part of
On the other hand, we all seem to agree that palliative care is not the
antidote to euthanasia or PAS requests, as there are some (very few) patients
who, even with optimal symptom control and good psychosocial care, prefer to
have full control over how to end their lives, and who will ask for hastened
death as they feel that this is the only way to exert that control.
Read More ->
PHYSICIAN-ASSISTED DYING: THE ANTITHESIS OF MEDICINE, SAYS DOC
“The main reason physicians should oppose physician-assisted suicide is
that assisted suicide directly contradicts the purpose of medicine. It directly
contradicts physicians’ long-standing profession, which is to maintain
solidarity with those who are sick and debilitated. It’s not just bad medicine;
it’s the antithesis of medicine.
Relieving suffering is obviously an essential aspect of physicians’
work. But if we have no other objective criteria to decide what suffering
you’re obligated to relieve and what suffering you’re not, then there is
literally no boundary on our use of medical technology to achieve things that
people want. Whatever conditions that people suffer, they can ask that we take
Read More-> [http://www.medscape.com/viewarticle/874232]
JOINT ADVOCACY FOR PALLIATIVE CARE IN DELHI
Following the recent successful Indian Association of Palliative Care
Conference (IAPCON) in Coimbatore, a team from the Indian Association of
Palliative Care (IAPC), the Worldwide Hospice Palliative Care Alliance (WHPCA),
the International Children’s Palliative Care Network (ICPCN) and the Indian
Association of Paediatrics (IAP), took the opportunity to advocate for
palliative care with key Government of India personnel within the Ministry of
Health, the World Health Organization, the Indian Council of Medical Research
and the Medical Council of India.
The need for ongoing advocacy for palliative care at the state level
was evident, although the support for palliative care at the national level was
Focusing their advocacy in Delhi, the team started by meeting with Alok
Mather and Dr Arum Panda from the Ministry of Health and Family Welfare, key
people in the Ministry responsible for palliative care development.
Read More ->
I WENT TO A DEATH CAFE TO LEARN HOW TO TALK TO DYING PATIENTS
It is taboo in British culture to talk about death. We say someone has
“passed away”, “kicked the bucket” or “left us” – anything to avoid even using
the word. This has consequences. While 70% of people wish to die at home, half
of us will actually die in hospital. Our reluctance to talk about death and
make our wishes known is part of the reason for this.
So I didn’t expect to enjoy visiting a death cafe. As soon as I
arrived, I knew I had made the right decision, however. The room hummed with a
low level of chatter, and I felt prepared to practise talking about death and
Read More ->
WHY IS PROGRESS IN PALLIATIVE CARE NOT HAPPENING FAST ENOUGH?
_Sue Boucher, eHospice International Children’s Edition_
Global palliative care activist, Claire Morris, has posted a new blog
on the Clore Social Leadership site which questions whether we would see
quicker progress in palliative care provision if it was led by those most
affected by life-limiting illnesses – the patients.
Perhaps we need to readdress the existing power balance and look at who
is speaking on behalf of who to develop a more impactful social justice
movement on the issue?
Read More ->
UPCOMING EVENTS [HTTP://PALLIUMINDIA.ORG/COURSES]
APRIL 8-9, 2017: Kerala state volunteers meet at Aluva, Kerala.
Contact: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx] / 9746745502
APRIL 21-22, 2017: Volunteer Training Program. Contact:
info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx] / 9746745497
APRIL 27,28,29: Kuttikkoottam Summer Camp for children of our patients,
Trivandrum. Contact: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx]
MAY 5-7, 2017: Painting exhibition at Trivandrum. Contact:
JUNE 5, 2017: One month certificate course
in Pain and Palliative Medicine for Doctors, Nurses, Social Workers and
Volunteers in Hyderabad, Telengana. Contact: mnj.palliative@xxxxxxxxx
JUNE 5, 2017: Six weeks certificate course for doctors and nurses
in Trivandrum (CCPPM & CCPN). Contact: info@xxxxxxxxxxxxxxxx
JUNE 5, 2017: 10 days Foundation course
in Palliative Medicine for Doctors. Contact: info@xxxxxxxxxxxxxxxx
JUNE 29-JULY 2, 2017: Rehabilitation products sale at Saphalyam
Complex, Trivandrum. Contact: info@xxxxxxxxxxxxxxxx
OCTOBER 14, 2017: International conference on Peri-operative Cancer
Care at Jawaharlal Nehru Auditorium AIIMS, New Delhi. Register:
For details on these programs, contact: info@xxxxxxxxxxxxxxxx
[mailto:info@xxxxxxxxxxxxxxxx] . Find out more at:
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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
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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/
PUT YOURSELF IN THE PLACE OF A PERSON WITH A DISABILITY
IF YOU HAVE NOT THOUGHT ABOUT THE WORD EMPATHY, GIVE A MINUTE TO PUT
YOURSELF IN THE PLACE OF SOMEONE WHO HAS A DISABILITY OR PARALYSIS.
_Pallium India’s volunteer, Ashla Krishnan (right), writes in the Times
I live my life on a wheelchair. I cannot move my lower limbs. I have
only partial use of my arms and hands. I cannot hold a cup; I cannot even comb
my own hair.
I have quadriplegia.
I have two choices. I have a loving family. I am sure my mother, my
sister and other family members will take care of me. I need only to stay in
bed. They will feed me, bathe me, and do all they can to make my life
But I want you to know that my paralysis does not define me. I want you
to recognise that I am more than my body. My brain, ordinary as it is, still
functions. I also have other abilities.
I am a Master of Computer Applications and can do several things. I can
use my skills to earn a living. Not only that, I can even contribute to
society. My family’s loving physical support can only keep my body alive. To
enliven my mind and soul, I need to be considered a human being.
I began by saying I am a quadriplegic. But I would want you to think of
me as a human being with quadriplegia."
_READ THE COMPLETE ARTICLE AT:_ _WHEN COMPASSION ISN’T ENOUGH: SOCIETY MUST
WAKE UP TO THE RIGHTS OF THOSE LIVING WITH DISABILITIES_