Pallium India Newsletter: December 2010
- From: Pallium India Newsletter <info@xxxxxxxxxxxxxxxx>
- To: "" <palliumindia@xxxxxxxxxxxxx>
- Date: Mon, 27 Dec 2010 02:36:19 +0000
Pallium India
Care Beyond Cure
A CARER, YOUR SUPPORT AND FORGIVENESS
[HTTP://PALLIUMINDIA.ORG/2010/12/A-CARER-YOUR-SUPPORT-AND-FORGIVENESS/]
[HTTP://WWW.FLICKR.COM/PHOTOS/14016905@N02/3078673728/] LAST WEEK, “SUMA”
COMMITTED SUICIDE.
Suma (not her real name) was a 26 year old postgraduate diploma holder
in computer science, but had been unable to go to work because she had to care
for her mother in their precarious thatched hut, perched on a strip of land
that, according to Government records, did not belong to them.
SUMA HAD GIVEN UP HER LIFE TO LOOK AFTER THE MOTHER. If there was a
support system to help care for people like her mother, Suma could have had a
good career, built a life and still looked after her mother. But it was not to
be. The medical system bled the family and forced them into abject poverty.
Neighbours found the mother dead, with Suma hanging right above her.
We palliative care workers are too often overwhelmed by stories like
this. We reach them too late, or when we do, our support is nowhere near
enough. And, not infrequently, we are forced to reject people who need us most,
because they live too far away or simply because their social or other problems
are beyond our ability to solve. Some of us burn out, unable to cope with the
suffering. Some of us go on, because so many of you out there wish us well and
support us.
This CHRISTMAS season, we share our pain with all of you for feeling so
impotent that we were not able to support Suma and her mother enough. "
_Suma, you lived a brave and meaningful life while it lasted. __We pray
for your forgiveness for not being supportive enough._"
-
PALLIATIVE CARE WORKSHOP AT RAJIV GANDHI CANCER CENTRE
[HTTP://PALLIUMINDIA.ORG/2010/12/PALLIATIVE-CARE-WORKSHOP-AT-RAJIV-GANDHI-CANCER-CENTRE/]
[HTTP://WWW.RGCI.ORG/] ONE OF THE GREATEST FAILURES OF THE INDIAN PALLIATIVE
CARE SCENE IS POOR INTEGRATION INTO ROUTINE HEALTH CARE.
The little palliative care that is in the country, is too often limited
to end of life situations, so that patients often have to go through a lot of
suffering during months or years of potentially curative treatment. But things
are changing, though slowly.
Rajiv Gandhi Cancer Centre [http://www.rgci.org/] at New Delhi has
been having a home visit program for a long time and is now seriously
considering integration of palliative care into their routine services.
_(Dr Dewan addressing the workshop, above.)_
As a first step, on December 10th 2010, they organised a one-day
workshop on palliative care, which PALLIUM INDIA had the privilege of
participating in.
Mrs Jyotsna Govil, one of the founders, and Dr Dewan, Medical Director,
were the chief organizers.
THEIR ENTHUSIASM WAS INFECTIOUS, AND WE LOOK FORWARD TO WORKING WITH THEM ON
THEIR NOBLE MISSION.
-
CANSUPPORT 10TH ANNUAL FOUNDATION COURSE IN PALLIATIVE CARE
[HTTP://PALLIUMINDIA.ORG/2010/12/CANSUPPORT-10TH-ANNUAL-FOUNDATION-COURSE-IN-PALLIATIVE-CARE/]
Dr. Ambika Rajvanshi, Director of Home Care at CanSupport
[http://www.cansupport.org] sends us an invite from CanSupport
[http://www.cansupport.org/] and Institute Rotary Cancer Hospital, AIIMS
[http://aiims.edu/aiims/departments/spcenter/IRCH/introduction.htm] to their: "
[HTTP://WWW.CANSUPPORT.ORG/NEWCANSUPPORT/INDEX.PHP?OPTION=COM_CONTENT&TASK=VIEW&ID=57&ITEMID=82]
10TH ANNUAL FOUNDATION COURSE IN PALLIATIVE CARE
[HTTP://WWW.CANSUPPORT.ORG/NEWCANSUPPORT/INDEX.PHP?OPTION=COM_CONTENT&TASK=VIEW&ID=57&ITEMID=82]
21-23 JANUARY, 2011 AT INDIA INTERNATIONAL CENTRE, NEW DELHI
[http://maps.google.com/maps/place?cid=8945137710068600106]
COURSE OBJECTIVES
* To introduce the principles of palliative care to a
multi-disciplinary group of doctors, nurses, counselors, social workers and
volunteers
* To equip participants with knowledge and skills to improve pain and
symptom control of patients under their care at home, hospital or hospice
* To enable participants to improve their communication skills and
handle difficult issues, such as breaking bad news and coping with loss and
grief
* To demonstrate the need and viability of multi-disciplinary team
approach in providing palliative care to patients
COURSE DETAILS
The course is a concentrated, multidisciplinary introduction to the
growing specialty of palliative care. Although the focus is on patients with
advanced cancer, the principles discussed are applicable to the care of all
patients with life-limiting illnesses. It is a practical structured course
aiming to tackle the subject of palliative care in the Indian context. Besides
expert trainers from CanSupport and Institute Rotary Cancer Hospital, AIIMS,
the faculty will consist of national and international experts in palliative
care. (Delhi Medical Council accreditation of 19 CME hours)
COURSE FEE: RS. 1000/-
LAST DATE FOR REGISTRATION: 10 JANUARY 2011 (LIMITED SEATS)
GET FULL REGISTRATION DETAILS ON THE CANSUPPORT WEBSITE…
[HTTP://WWW.CANSUPPORT.ORG/NEWCANSUPPORT/INDEX.PHP?OPTION=COM_CONTENT&TASK=VIEW&ID=57&ITEMID=82]
"
-
CANKIDS CAPACITY BUILDING WORKSHOP, NEW DELHI
[HTTP://PALLIUMINDIA.ORG/2010/12/CANKIDS-CAPACITY-BUILDING-WORKSHOP-NEW-DELHI-14-17-DEC/]
[http://www.cankidsindia.org/capacity_workshop.html]
CanKids [http://www.cankidsindia.org/capacity_workshop.html] , in
association with INCTR
[http://www.inctr.org/network-magazine/current-edition/reports/mnj-palliative-care-program-makes-enormous-strides/]
and PALLIUM INDIA [http://palliumindia.org/] , is held their 2ND CAPACITY
BUILDING WORKSHOP in New Delhi recently. "
CANKIDS 2ND CAPACITY BUILDING WORKSHOP FOR PEDIATRIC CANCER SUPPORT SERVICES &
PEDIATRIC PALLIATIVE CARE [HTTP://WWW.CANKIDSINDIA.ORG/CAPACITY_WORKSHOP.HTML]
– 14-17TH DECEMBER 2010, NEW DELHI, INDIA
Trainers included:
* Dr Anjay Babu Sadasivan, CanKids Pediatric Palliative Care Physician
& Palliative care consultant – GCCI, New Delhi
* Dr. Amita Mahajan, Senior consultant & Pediatric Oncologist – Apollo
Hospital & CanKids Vice president, Technical
* Dr Sindhu Nair, Oncologist and Palliative Care Physician, Global
Cancer Concern India
* and the CanKids Training Team "
MORE INFORMATION ON THE CANKIDS WEBSITE…
[HTTP://WWW.CANKIDSINDIA.ORG/CAPACITY_WORKSHOP.HTML]
-
ACCESS TO PAIN RELIEF IS A HUMAN RIGHT
[HTTP://PALLIUMINDIA.ORG/2010/11/ACCESS-TO-PAIN-RELIEF-IS-A-HUMAN-RIGHT/]
[HTTP://WWW.IASP-PAIN.ORG/CONTENT/NAVIGATIONMENU/INTERNATIONALPAINSUMMIT/DECLARATIONOFMONTR233AL/DEFAULT.HTM]
PLEASE SIGN THE DECLARATION OF MONTRéAL
The International Association for Study of Pain
[http://www.iasp-pain.org] (IASP) had organized a “ Global Pain Summit
[http://palliumindia.org/2010/09/award-at-13th-world-congress-on-pain/] ” on 3
October 2010 at Montreal, Canada. The chairman of Pallium India was a member of
its steering committee.
The summit had announced “ THE MONTREAL DECLARATION
[HTTP://WWW.IASP-PAIN.ORG/CONTENT/NAVIGATIONMENU/INTERNATIONALPAINSUMMIT/DECLARATIONOFMONTR233AL/DEFAULT.HTM]
“, which has now been accepted by the IASP council. Essentially, the document
declares access to pain relief as a human right, and spells out the components
of that right.
You can view the declaration at the IASP website
[http://www.iasp-pain.org/Content/NavigationMenu/InternationalPainSummit/DeclarationofMontr233al/default.htm]
and sign the declaration either as an individual
[http://www.iasp-pain.org/AM/Template.cfm?Section=Declaration_of_MontrandNum233_al&Template=/CM/HTMLDisplay.cfm&ContentID=12217]
or on behalf of an organization
[http://www.iasp-pain.org/AM/Template.cfm?Section=Declaration_of_MontrandNum233_al&Template=/CM/HTMLDisplay.cfm&ContentID=12218]
.
PLEASE SUPPORT THE CAUSE BY SIGNING
[HTTP://WWW.IASP-PAIN.ORG/CONTENT/NAVIGATIONMENU/INTERNATIONALPAINSUMMIT/DECLARATIONOFMONTR233AL/DEFAULT.HTM#SIGN]
IT.
IT WILL TAKE ONLY A MINUTE OF YOUR TIME!
-
JCNC HEALTH & WELLNESS FAIR
[HTTP://PALLIUMINDIA.ORG/2010/11/JCNC-HEALTH-WELLNESS-FAIR/]
[http://palliumindia.org/usa] Pallium India-USA [/usa] was invited to
participate in a Health and Wellness Fair
[http://www.jcnc.org/home/news/jcnchealthwellnessfare] at the Jain Center of
Northern California [http://www.jcnc.org/] , in Milpitas on 13th November 2010.
The event was organised jointly with the South Asian Heart Center
[http://www.southasianheartcenter.org/] .
The topic was PALLIATIVE CARE AND ADVANCE HEALTH CARE DIRECTIVES for
the US based South Asian population.
Quite a lot of people expressed interest with two pages of our
guestbook filled with names of people who want to know more about Pallium India
– many of them want to consider VOLUNTEERING
[http://palliumindia.org/usa/about] .
MANY THANKS, YOU WONDERFUL PEOPLE. EXPECT AN EMAIL FROM US SOON!
-
PLACES AVAILABLE FOR APHN PALLIATIVE CARE CERTIFICATE AT FLINDERS UNIVERSITY
[HTTP://PALLIUMINDIA.ORG/2010/12/PLACES-AVAILABLE-FOR-APHN-PALLIATIVE-CARE-CERTIFICATE-AT-FLINDERS-UNIVERSITY/]
Ms Wei-Yee from Asia Pacific Hospice Network (APHN)
[http://www.aphn.org/] , writing on behalf of APHN Chair Dr Cynthia Goh: "
[http://www.aphn.org/board/list.html?code=notice&num=35] The 2011
intake of the APHN Diploma/Graduate Certificate in Palliative Care of Flinders
University still has vacancies.
The course fee for selected candidates from India will be at a
subsidised rate of USD2,000.
The course application form and funding information can be downloaded
from the APHN website… [http://www.aphn.org/board/list.html?code=notice&num=35]
"
Wei-Yee goes on to say that ADDITIONAL FUNDING is also possible from
Help the Hospices [http://www.helpthehospices.org.uk/] .
If you have questions, plesae contact Wei-Yee by email: aphn@xxxxxxxx
[mailto:aphn@xxxxxxxx]
See our previous blog entry on: APHN Diploma Of Palliative Care /
Graduate Certificate In Palliative Care
[http://palliumindia.org/2010/11/aphn-diploma-of-palliative-care-graduate-certificate-in-palliative-care-flinders-university/]
-
PEDIATRIC PAIN MASTER CLASS SCHOLARSHIPS
[HTTP://PALLIUMINDIA.ORG/2010/12/PEDIATRIC-PAIN-MASTER-CLASS-SCHOLARSHIPS/]
[http://www.childrensmn.org/Services/PainPalliativeCare/] Dr Frank
Ferris has informed us of a wonderful scholarship opportunity open
to physicians from developing countries, offered by The Foundation of
Children’s Hospitals and Clinics of Minnesota [http://www.childrensmn.org/]
and Children’s Institute for Pain and Palliative Care (CIPPC)
[http://www.childrensmn.org/web/hospice/026045.asp] .
Dr Ferris says, _“Dr. Friedrichsdorf and his team are very committed to
advancing pediatric palliative care in low and moderate resource countries.”_
APPLICATION DEADLINE: JANUARY 15, 2011
"
SCHOLARSHIPS TO APPLICANTS FROM DEVELOPING COUNTRIES FOR THE PEDIATRIC PAIN
MASTER CLASS, MINNEAPOLIS, MN, USA (JUNE 11-17, 2011) PLUS A ONE-WEEK CLINICAL
PRACTICUM (JUNE 6-9, 2011) WITH THE PAIN AND PALLIATIVE CARE TEAM. [ PDF
[HTTP://WWW.CHILDRENSMN.ORG/WEB/HOSPICE/194757.PDF] ]
Funded by The Foundation of Children’s Hospitals and Clinics of
Minnesota [http://www.childrensmn.org/] , the Children’s Institute for Pain and
Palliative Care (CIPPC) [http://www.childrensmn.org/web/hospice/026045.asp] is
offering two competitive scholarships for physicians from developing countries
currently working in the field of pediatric pain and/or palliative care.
The recipients of this scholarship will be selected based on leadership
abilities, commitment to moving the field of pediatric pain and palliative care
forward, and attending to underserved pediatric populations. The goal of this
scholarship program is to identify medical professionals who are in a position
to improve acute and chronic pain management for children both in their
institution and beyond (region or country).
THIS 2-WEEK INTERNATIONAL SCHOLARSHIP INCLUDES:
* Airfare to and from Minneapolis/St. Paul
* Hotel accommodation and meals
* 1-week practicum with the Pain & Palliative Care Team at Children’s
Hospitals and Clinics of Minnesota (June 6-9, 2011)
* 100% course tuition for the Pediatric Pain Master Class
[http://www.childrensmn.org/Services/PainPalliativeCare] , Minneapolis, MN,
USA (June 11-17, 2011)
* Ongoing mentorship
CLICK HERE FOR FULL DETAILS & APPLICATION GUIDELINES…
[HTTP://WWW.CHILDRENSMN.ORG/WEB/HOSPICE/194757.PDF] (PDF)
"
-
TWO OUT OF THREE BRITS WANT TO DIE AT HOME…
[HTTP://PALLIUMINDIA.ORG/2010/11/TWO-OUT-OF-THREE-BRITS-WANT-TO-DIE-AT-HOME/]
The DEMOS [http://www.demos.co.uk] report, Dying for Change
[http://www.demos.co.uk/publications/dyingforchange] , finds that two out of
three Britishers would prefer to die at home, but actually 60% of them die in
hospital today. And that is in a country in which the concept of palliative
care was born and bred and which is in the forefront in the international
palliative care scene.
The report mentions that UK needs 500 billion pounds a year to provide
sufficient support at home. Is that not a lot of money? It sure is, but think
of the huge amount of money it will save from needless hospital costs! "
DYING FOR CHANGE [HTTP://WWW.DEMOS.CO.UK/PUBLICATIONS/DYINGFORCHANGE]
[http://www.demos.co.uk/files/Dying_for_change_-_web_-_final_1_.pdf]
The institutionalised ways we cope with dying do not align with how
most people aspire to die. Most people want to die with family and friends
nearby, cared for, free from pain, with medical support available when needed.
Yet most people will die in hospitals and care homes, often cut off from
friends and family, dependent on systems and procedures that feel impersonal,
over which they have little control and which too often offer them little
dignity. We spend large sums of taxpayer’s money – at least £20 billion a year
– on services that leave too many people feeling confused, frustrated and
distressed too much of the time.
The UK should be able to provide people with better ways to die. The
pamphlet argues for improvements to existing services: making end of life
advance care plans the norm; training more in the medical profession in
palliative care; and more greatly integrating the care services provided by the
public, private and voluntary sectors. It also suggests radical innovations: a
new infrastructure of home hospices, the creation of a compassionate care
benefit and a properly trained volunteer support network providing palliative
care – a perfect opportunity for the Big Society. The challenge is to help
people to achieve what is most important to them at the end of life. Dying for
Change describes how that challenge can be overcome."
WHEN WE CONSIDER DEVELOPING COUNTRIES LIKE INDIA, EVEN IF THE HEALTH CARE
SYSTEM DOES NOT CARE ABOUT THE FEELINGS OF DYING PEOPLE AND THEIR FAMILIES, IT
SHOULD AT LEAST CONSIDER THE REDUCTION IN HEALTH CARE COSTS!
-
PALLIATIVE CARE AT THE 30TH INDIA INTERNATIONAL TRADE FAIR 2010
[HTTP://PALLIUMINDIA.ORG/2010/11/PALLIATIVE-CARE-AT-THE-30TH-INDIA-INTERNATIONAL-TRADE-FAIR-2010/]
[http://dnipcare.blogspot.com/2010/11/palliative-care-first-time-in-india.html]
Volunteer palliative care group, Delhites’ National Initiative in Palliative
Care [http://dnipcare.blogspot.com/] (DNipCare), has been exhibiting at the
India International Trade Fair 2010 [http://iitf.in/] in the Health Ministry
[http://www.mohfw.nic.in/] pavillion.
The 30th India International Trade Fair [http://iitf.in] is being held
at Pragati Maidan, New Delhi and runs from 14-27 November, 2010 – more
information here… [http://iitf.in/complex.html]
FROM THE DNIPCARE
[http://dnipcare.blogspot.com/2010/11/palliative-care-first-time-in-india.html]
BLOG: "
_Shri _ _Ghulam Nabi Azad_
[http://india.gov.in/govt/rajyasabhampbiodata.php?mpcode=126] _, Honourable
Union Minister for Health & Family Welfare appreciated DNipCare by his jotting
down in the Visitor’s book, __“I AM EXTREMELY HAPPY THE WAY DNIPCARE IS
PROVIDING HOME TO HOME SERVICE. I WISH THE ORGANIZATION BEST OF LUCK”__._
_It is the first time in the history of India International Trade Fair
that Palliative Care concept has been given a chance to propagate to the
masses. We are grateful to the Ministry of Health & Family Welfare and also to
all our wellwishers who encouraged us in our mission for the ailing patients._
– Visit the DNipCare blog for more pictures…
[http://dnipcare.blogspot.com/2010/11/palliative-care-first-time-in-india.html]
"
CONGRATULATIONS, DNIPCARE! AND THANK YOU MR SURESH THALIYARIL FOR SENDING THE
INFORMATION TO US.
* We’ve blogged about DNipCare before: Indian Express: Weekend Visits
[http://palliumindia.org/2010/05/indian-express-weekend-visits/]
-
INSTITUTE OF PALLIATIVE MEDICINE: WHO COLLABORATING CENTRE
[HTTP://PALLIUMINDIA.ORG/2010/11/INSTITUTE-OF-PALLIATIVE-MEDICINE-WHO-COLLABORATING-CENTRE/]
Dr Suresh Kumar, Director of the Institute of Palliative Medicine
[http://instituteofpalliativemedicine.org] (Calicut) informs us of a new
designation from the World Health Organization [http://who.int] : "
[http://apps.who.int/whocc/Detail.aspx?cc_ref=IND-106&cc_code=ind&;]
Dear All, Happy to inform you that Institute of Palliative Medicine
[http://instituteofpalliativemedicine.org/Link%202.html] has been designated as
a WORLD HEALTH ORGANIZATION COLLABORATING CENTER
[http://apps.who.int/whocc/Detail.aspx?cc_ref=IND-106&cc_code=ind&;] (WHOCC) in
Palliative Care. IPM becomes the fifth WHOCC
[http://www.who.int/collaboratingcentres/en/] in Palliative Care in the World
and the first one in the Developing world. We hope that this important
designation to a center in India can be used to strengthen the evolving
national palliative care initiative in the country.
Regards,
Dr Suresh Kumar
DIRECTOR, WHO COLLABORATING CENTER FOR COMMUNITY PARTICIPATION IN PALLIATIVE
CARE AND LONG TERM CARE
[HTTP://APPS.WHO.INT/WHOCC/DETAIL.ASPX?CC_REF=IND-106&CC_CODE=IND&] "
-
HIV/AIDS, INDIA AND OUR COLLECTIVE CONSCIENCE
[HTTP://PALLIUMINDIA.ORG/2010/11/HIVAIDS-INDIA-AND-OUR-COLLECTIVE-CONSCIENCE/]
DO YOU SEE A SCAR GOING ROUND THE NECK?
THAT SCAR SHOULD BE ON OUR COLLECTIVE CONSCIENCE.
“RAMESH” (NOT HIS REAL NAME) IS JUST 25. THE INDUSTRIALIZATION OF OUR BRAVE NEW
INDIA DROVE HIM FROM HIS AGRICULTURAL LAND IN RURAL KARNATAKA AND MADE HIM A
TRUCK DRIVER. WHEN HE GOT PAIN IN HIS TUMMY AND EVENTUALLY WAS GIVEN A
DIAGNOSIS OF HIV, THAT WORLD REJECTED HIM. PAIN, HIV AND THE REJECTION TOGETHER
FORCED HIM TO TRY TO HANG HIMSELF. “I DID NOT SUCCEED EVEN IN THAT,” HE SAYS
RUEFULLY.
HOW MANY THOUSANDS OF DESPERATE MEN IN EVERY STATE IN INDIA ARE LIKE HIM, IN
PAIN AND SUFFERING, REJECTED BY THE MEDICAL SYSTEM AND THE SOCIETY?
Enormous advances [http://www.avert.org/aidsindia.htm] have been made
in India [http://www.indiatogether.in/health/aids.htm] in developing
[http://www.nacoonline.org/] a care system for those with HIV
[http://en.wikipedia.org/wiki/HIV/AIDS_in_India] , but that system does not yet
embrace pain relief or palliative care.
[http://www.samraksha.org/] “Ramesh” is one of a small minority of
people with HIV and pain who get care and pain relief. He has been taken in by
ASHA JYOTI, a care centre run by “ SAMRAKSHA [http://www.samraksha.org/] “ in
Kushtagi, Northern Karnataka.
Over the last two months PALLIUM INDIA has been collaborating with
Samraksha to bring in routine pain assessment and symptom control as part of
the routine care at Asha Jyoti.
THERE IS A LONG WAY TO GO YET AT ASHA JYOTI, BUT A GOOD BEGINNING HAS
BEEN MADE, AND AN AMAZINGLY SINCERE TEAM IS DOING A WONDERFUL JOB.
BUT HOW LONG WILL IT BE BEFORE PAIN RELIEF AND PALLIATIVE CARE BECOME ESSENTIAL
COMPONENTS OF HIV CARE IN INDIA?
Watch more video testimonials on Samraksha’s Youtube channel
[http://www.youtube.com/user/Samraksha1#g/u] which includes Paramesh’s on Asha
Jyoti in Kushtagi [http://www.youtube.com/watch?v=aZ8fLiEB4Yk] .
-
SEA OF POPPIES [HTTP://PALLIUMINDIA.ORG/2010/11/SEA-OF-POPPIES/]
[HTTP://EN.WIKIPEDIA.ORG/WIKI/SEA_OF_POPPIES]
THE ISSUE OF OPIOID AVAILABILITY IS SUCH A HUGE CONCERN FOR PALLIATIVE CARE
PEOPLE THAT ALL THEIR ANTENNAE GO UP WHEN THEY HEAR THE WORD ‘POPPY’.
Well, you will not regret it if you pick up “SEA OF POPPIES”
[http://en.wikipedia.org/wiki/Sea_of_Poppies] by Amitav Ghosh
[http://www.amitavghosh.com/] (Penguin Books, 2008) – a book
[http://www.guardian.co.uk/books/2008/jun/07/fiction7] short-listed for the Man
Booker Prize [http://www.themanbookerprize.com/prize/books/363] in 2008.
Set on the Gangetic [http://en.wikipedia.org/wiki/Indo-Gangetic_Plain]
plains and the wide ocean during the days of the British Raj, it is indeed a
masterpiece. Read it and it will take you inside
[http://www.bihartimes.in/articles/amarnath/opium.html] the Opium and Alkaloid
Factory [https://goaf.gov.in/factories.html] in Ghazipur
[http://cbn.nic.in/html/ccf.htm] . And the poppy is indeed a major character in
the book, "
_LIKE ALL THE GIFTS THAT NATURE GIVES US – FIRE, WATER AND THE REST –
IT [OPIUM] DEMANDS TO BE USED WITH THE GREATEST CARE AND CAUTION._"
WISE WORDS INDEED. WE PALLIATIVE CARE PEOPLE IN THE DEVELOPING WORLD
PARTICULARLY NEED TO REMEMBER THIS. In our enthusiasm to improve access to
opioids, do we sometimes forget to ensure that it is stored, dispensed and
monitored with caution?
-
THE AVASTIN DEBATE [HTTP://PALLIUMINDIA.ORG/2010/11/THE-AVASTIN-DEBATE/]
[HTTP://WWW.GUARDIAN.CO.UK/COMMENTISFREE/2010/AUG/25/AVASTIN-CANCER-DRUGS-PALLIATIVE-CARE]
ONE OF THE FUNDAMENTAL ETHICAL PRINCIPLES OF MEDICAL PRACTICE IS “JUSTICE” –
the fair allocation of available resources. So, should the National Health
Service [http://www.nhs.uk/] of UK offer Avastin
[http://en.wikipedia.org/wiki/Bevacizumab] , a drug that can possibly prolong
survival in cancer?
When the National Institute for Clinical Excellence
[http://www.nice.org.uk/] (NICE) announced that it would not approve funding
for Avastin, it set off a predictable firestorm of protests from concerned
groups.
The Guardian points out
[http://www.guardian.co.uk/commentisfree/2010/aug/25/avastin-cancer-drugs-palliative-care]
that a rational discussion should take into consideration a recent report in
the New England Journal of Medicine
[http://palliumindia.org/2010/08/palliative-care-improves-quality-of-life-prolongs-survival/]
which showed that early access to palliative care improved survival by as much
as three months in people with lung cancer.
It also showed that access to early palliative care increases the
likelihood of people getting precisely what they want out of their final months
and reduces suffering, depression and burden on their family at the same time
enabling them to live longer.
INTERESTING, IS IT NOT, THAT DESPITE THIS EVIDENCE, THERE ARE PEOPLE TO
FIGHT FOR AVASTIN, BUT NOT FOR THE MUCH LESS EXPENSIVE OPTION OF EARLY ACCESS
TO PALLIATIVE CARE!
-
NEW SECTION: YOUR HEALTH
[HTTP://PALLIUMINDIA.ORG/2010/11/NEW-SECTION-YOUR-HEALTH/]
[http://palliumindia.org/yourhealth]
PALLIUM INDIA IS HONOURED TO PARTNER WITH AMERICAN CANCER SOCIETY
[HTTP://CANCER.ORG] (ACS) IN DISSEMINATING AN EXCELLENT RESOURCE ON CANCER
“PREVENTION TO PALLIATION WITH AN ADDITIONAL FOCUS ON THEIR CAREGIVERS”.
The material, created by an expert ACS team of medical editors
[http://www5.cancer.org/docroot/subsite/ACSIndia/content/Editorial_Team.asp]
from India and the US under the guidance of a National Advisory Board
(India), falls into two categories:
* KEEP YOURSELF HEALTHY [http://palliumindia.org/yourhealth]
A series of documents about healthy behaviours and prevention & early detection
for breast, cervix, and oral cancers and
* IF YOU HAVE CANCER [http://palliumindia.org/yourhealth]
Documents addressing common issues such as side affects, pain, lab tests, etc.
that patients and their caregivers are concerned about when undergoing cancer
treatment.
ACCESS THESE PRECIOUS DOCUMENTS FREE FROM OUR NEW
[HTTP://PALLIUMINDIA.ORG/YOURHEALTH] ‘YOUR HEALTH’ PAGE…
[HTTP://PALLIUMINDIA.ORG/YOURHEALTH]
The PDF files are available in English, Hindi and Gujarati. Please
share them with your colleagues, friends and family.
If you have taken a good look at the WHO’s definition of palliative
care [http://www.who.int/cancer/palliative/definition/en/] , you would
recollect that it includes “PREVENTION OF SUFFERING”.
WHY SHOULD WE WAIT TILL A CANCER HAS PROGRESSED TO THE INCURABLE STAGE AND THEN
ONLY PROVIDE TENDER LOVING CARE? LET US DO WHAT WE CAN TO PREVENT SUFFERING.
-
MEDICATED INTO POVERTY
[HTTP://PALLIUMINDIA.ORG/2010/12/MEDICATED-INTO-POVERTY/]
[http://www.flickr.com/photos/8011986@N02/2689975613/]
WE HAVE, ON THIS BLOG, TALKED ABOUT THE HIGH COSTS OF MODERN MEDICAL
TREATMENT AND ITS IMPACT ON SOCIETY.
The 2009 edition of the Oxford Textbook of Palliative Medicine
[http://books.google.com/books?id=1n93PGjL0IMC&printsec=frontcover#v=onepage&q&f=false]
says, "
_… a study in rural Kerala, South India, of those below the poverty
line, the main reason for the poverty in nearly 30 percent of cases was the
cost of medical treatment._"
Well, India does not seem to have monopoly on the matter. The UK’s
Independent newspaper reports in “Counting the cost of a drugs revolution”
[http://www.independent.co.uk/life-style/health-and-families/health-news/counting-the-cost-of-a-drugs-revolution-2149767.html]
that Western medicines are making China’s ancient medical practices
increasingly redundant, but their high price tag is also pushing millions
further into poverty.
-
A BEAUTIFUL DEATH – FACING THE FUTURE WITH PEACE
[HTTP://PALLIUMINDIA.ORG/2010/12/A-BEAUTIFUL-DEATH-FACING-THE-FUTURE-WITH-PEACE/]
Cheryl Eckl shares her poignant story in “A Beautiful Death – Facing
the Future with Peace” [http://www.abeautifuldeath.net/the-book] , her book on
facing death, grief and loss with confidence, peace and grace, "
[http://www.abeautifuldeath.net/the-book] I wrote this book because I
was moved to share what I learned from facing death.
IN 2004 I WAS LIVING A DREAM. I HAD BEEN MARRIED TO STEPHEN, THE LOVE
OF MY LIFE, FOR 14 YEARS. BUT WHEN HE WAS DIAGNOSED WITH TERMINAL CANCER, I
SUDDENLY FOUND MYSELF ON AN UNEXPECTED AND UNWELCOME JOURNEY WITH NO ROAD MAP.
At first I did my best to keep him alive, to preserve our life
together, to give us more time to love each other. When it became horribly
clear that he was not going to make it, I had to change my focus from his
survival to easing his pain and helping him through the dying process as
authentically as he had lived.
A Beautiful Death is our story of love and loss, of learning and
letting go, of my doing absolutely all I was capable of for the one I loved.
And of believing that, while nothing could save him, everything I did could
contribute to a better end.
I wrote this book to explain to myself what happened so I could bear to
go on with my life alone. And I wrote it for you as proof that not only can you
handle whatever challenges life sends you, but you can also become more present
to life’s joys in the process.
Dying is something we will all do in this life, and it is likely to be
difficult; but what matters is who we are being while we’re doing it. Stephen
taught me that and that’s the story I fashioned from the journals I had kept
during our 18 years together.
Throughout Stephen’s illness, I found that reading about how other
people faced death gave me courage and confidence that I could walk up to that
final doorway with my beloved. I hope that reading A Beautiful Death does the
same for you."
* Cheryl offers plenty of helpful advice on her blog…
[http://www.abeautifuldeath.net/blog]
-
A LETTER: PARENT TO PARENT
[HTTP://PALLIUMINDIA.ORG/2010/12/A-LETTER-PARENT-TO-PARENT/]
Here is a letter from a parent who suffered prolonged pain and finally
loss of a child – to any parent whose child has been given a difficult
diagnosis or who has lost a child. The writer is Ms Dianne Gray
[http://palliumindia.org/2010/10/a-child-in-pain-a-mothers-suffering/] of
Elisabeth Kübler Ross Foundation [http://www.ekrfoundation.org/] . "
[HTTP://WWW.FLICKR.COM/PHOTOS/23172783@N07/3533955807/] DEAR PARENT,
First, my most sincere condolences on the diagnosis of your child.
Second, hold on to your to hat, your heart, your mind, and most of all,
get ready for the ride of your life.
You will no longer see life as expendable, and you will never be able
to go back to a time when the candles of a birthday cake mean looking forward
with hope or with an eager anticipation of joyous beginnings.
I know because, like you, I was once the parent of a child who was
newly diagnosed with an incurable disease. The most honest advice I can give is
this: Let the dishes pile up in the sink (though mold is just plain gross) and
let the fresh air in, because there is no time like the present to enjoy your
child’s laughter and smell his or her skin. Kick your shoes off, eat popcorn in
bed, then have a good hard cry. First for your child, then for yourself.
Honestly, not only is your child’s life ending, but your lifetime
dreams have just been “put to sail”, so to speak. Feel sorry for yourself,
because you deserve it. Then get up, and make the most of the incredible life
lesson that you have just received. It’s called, “Life is Short.” You will
never, ever, take a day or an hour with your child or any other loved one, for
granted again.
Trust me, there are millions of drugs sold every day to people who are
filled with a life lacking gratitude or an appreciation for those around them.
You will not be in line for those, though at times you will feel like you need
some sort of pharmaceutical assistance to get through the day. Shockingly, you
probably will not need them because your drive to protect and love your child
will act as a drug itself.
Most important, listen to your gut, your intuition. You know what I’m
talking about. Some of you already knew before you were told by your child’s
physician, that you were in deep, deep “doo-doo” as they say, when it came to
the topic of your child’s health. On those days when you look into your child’s
eyes, and you “know” something is wrong, listen. No one knows your child as
well as you do. You have probably been “connected” way before the moment of
his/her diagnosis, so trust your intuition and take seriously your role as your
child’s advocate, mouthpiece, and protector.
Finally, remember that you are loved by a community that is by far
larger than you can possibly imagine at this moment. The “club” of parents who
have had sick kids is many and we are mighty. We may not carry on our backs a
placard that says “mother of dying or dead child”, but we are there and we love
you though we don’t know you. We are in line at the grocery store and the mall.
We are in the elevator, at the gas station, and on airplanes sitting next to
you. We ache for you and somehow, we know of your unspeakable burden.
[http://www.ekrfoundation.org/about]
Reach out for help sometimes when it seems completely ridiculous or
terrifying to do so. You never know who will standing beside you. It may even
be me.
Blessings as you continue your journey,
Dianne Gray"
-
AS WE CLOSE OUT 2010…
No matter how much we read about suffering or watch other people
suffering, it is only when we ourselves suffer that we know what pain is.
This Christmas season, let us take a pledge to be sensitive to the
suffering of others.
Life does not require us to make good, it asks only that we give our
best at each level of experience.
WISHING YOU ALL A HAPPY NEW YEAR. WE LOOK FORWARD TO YOUR CONTINUED SUPPORT AND
ENCOURAGEMENT IN 2011.
Other related posts:
- » Pallium India Newsletter: December 2010 - Pallium India Newsletter
