Pallium India
Care Beyond Cure
* ~~~~~~~~~~~~~~ *
! September 2016 !
* ~~~~~~~~~~~~~~ *
http://palliumindia.org/2016/08/september-2016/
August 31, 2016
DEAR FRIENDS,
Every day we try to convince ourselves that we are doing the right
thing, to the best of our efforts, and that our hard work and commitment will
bear fruit, sooner or later. This gives us the strength to keep going, day
after day, in the face of adversity. And every once in a while, we come across
news that makes us buckle before its intensity, and brings home to us the truth
that we still have a long, long way to go.
Read Mahesh’s story, written by Smriti Rana:
FALLEN ANGELS – MAHESH’S STORY
[HTTP://PALLIUMINDIA.ORG/2016/08/FALLEN-ANGELS-MAHESHS-STORY/]
On the 14th of August 2016, a leading newspaper in India published an
article about a man who moved a local court in the Chittoor district of Andhra
Pradesh, seeking to euthanize his 4-year-old son
[http://www.thehindu.com/news/national/andhra-pradesh/man-seeks-euthanasia-for-son/article8986981.ece]
. He was denied this request.
According to the article, the little boy, Mahesh, was diagnosed with
cancer a few weeks after he was born. The family took him to some of the major
cities of southern India – Chennai, Hyderabad, Vellore and Bangalore – seeking
help and treatment. They racked up a debt of 15,00,000 rupees (the equivalent
of approximately $22,500) – a prohibitive amount for anybody in a developing
country. A devastating amount for a family whose only breadwinner works as a
barber in a village.
Each of these cities has established pain and palliative care centers.
Yet, no referrals were made to them. Mahesh suffered unnecessary, debilitating
pain. He cried constantly, causing his family unrelenting anguish. At the end
of 4 years, the family had sold everything they owned, with no resulting
benefit to the child.
On reading this article, palliative care teams in both Hyderabad and
Trivandrum started frantically networking in a desperate attempt to track down
the family, reach them and try to alleviate Mahesh’s suffering before it was
too late. It took the teams close to 48 hours to finally make contact with the
father. The family was found in Bangalore, with little Mahesh in an ICU,
bleeding from multiple places.
His pain had still not been addressed.
A counselor from the MNJ Institute of Oncology, Department of Pain and
Palliative Care made an overnight bus journey carrying essential opioids to try
and reach the family, while other avenues were explored locally.
On the 20th of August, despite our best efforts, Mahesh died hooked up
to machines
[http://www.thehindu.com/todays-paper/tp-national/tp-andhrapradesh/cancerhit-boy-whose-mercy-killing-was-sought-dies/article9015968.ece]
, far from home, in unyielding and unspeakable pain, watched by his horrified
parents.
He had completed his 5th birthday just the day before.
This is not a story about the pros and cons of euthanasia – a concept
hotly debated today by an entire country that, at best, has a feeble grasp on
its many nuances. This is a story about the unforgivable failure on the part of
the healthcare system to address the boy’s pain in the absence of curative
treatment options.
Before we demand unilateral legislation for or against euthanasia, we
need to examine the reason why so many people seek it. If the sole reason is
pain and distress that we have an arsenal of medication to significantly
relieve, but withhold, it is not just incompetence or ignorance – it is the
equivalent of willfully inflicting torture on another human being.
The ordeal left deep scars on everyone who connected with this family
for the few days and hours before Mahesh died. A senior palliative care
physician reported feeling “ashamed” that one of the hospitals Mahesh was taken
to is a stone’s throw away from her office window. The hospital did not even
think to refer the child to its neighbour, which happens to be one of the
leading Palliative care departments in the country.
The counselor who made the overnight journey, and has extensive
experience in palliative care, was left numb with grief and despair in the
aftermath of witnessing Mahesh’s traumatic death.
The rest of us continue to feel in turn appalled, angry, indignant,
helpless and heartbroken at the reprehensible way in which this family has been
dealt with over five long years, when all the while help was at hand.
Mahesh’s father said that on several occasions, after making what must
have been a cruel journey over long distances with a very sick child and no
resources, they were outright denied admission.
We cannot take lightly the fact that we know about Mahesh only because
someone told his story, whatever the angle might have been. There are thousands
of families undergoing this ordeal as you read this. Some have not waited for
death to come naturally. Two years ago, a couple killed their own child and
then committed suicide
[http://palliumindia.org/2014/06/parents-kill-son-in-pain-before-committing-suicide-in-hospital/]
_while admitted_ in a hospital. How many more must be taking their lives into
their own hands hidden behind the veil of impoverished obscurity, and going
unnoticed?
At what point will we finally tap into the resources and teams that are
waiting on standby for just that one referral a hospital has to make when they
are no longer equipped or inclined to manage pain?
There are situations over which we have no control as a society. And
then there are situations that can be made better. If you care about the
euthanasia debate, you need to begin with the back-story.
* If you are reading this, you have access to us.
* Through us, you have access to organizations that are working hard to
improve access to pain management in India, and
* You can help put an end to such incidents that can only be classified
as atrocities.
1-2-3 steps. Not even six degrees of separation.
Don’t turn away from this story because you don’t think you are like
that poor family or that your life is not connected with theirs; or that you
can get to the best hospitals. The best hospitals in this country would usually
offer high-tech, expensive, painful intensive care to the dying person; but not
pain relief. Less than 1% of hospitals in our country have oral morphine, which
is classed as an essential medicine in the Government of India’s list.
If you consider one of the markers of a civilized society to be its
stand on the right to self-determination, know that making available the human
right to freedom from pain is an even bigger touchstone.
Everyone is connected. We are your connection. You can play a part.
Let no more people seek to euthanize themselves, their children or
loved ones when a pain-free life is within reach.
_(The author, SMRITI RANA, is a Consulting Psychologist and Programme
Director for Pallium India’s Children’s Palliative Care Project. Photo
courtesy: The Hindu)_
–
LIVING WITH DIGNITY – TILL THE VERY END
[HTTP://PALLIUMINDIA.ORG/2016/08/LIVING-WITH-DIGNITY-TILL-THE-VERY-END/]
In June 2016, the Government of India uploaded on its website a
proposal for a draft law for “Protection of Terminally ill Patients and Medical
Practitioners”.
The way it was drafted, it threatens to violate one’s autonomy and to
worsen suffering towards the end of one’s life. Pallium India participated in
two very successful public awareness programs on the subject, one in Delhi and
one in Mumbai. Dr Nandini Vallath represented Trivandrum Institute of
Palliative Sciences on both occasions.
On 26th of August 2016, 2 days after Elisabeth Kübler-Ross’ death
anniversary, we conducted a public awareness program in Trivandrum. Please see
the report in _The Hindu_: Draft Bill should be clear about euthanasia: experts
[http://www.thehindu.com/news/cities/Thiruvananthapuram/draft-bill-should-be-clear-about-euthanasia-experts/article9039252.ece]
Thank you, Sri M G Radhakrishnan of Asianet News for moderating the
discussions, Dr B. Ekbal, member of the planning board of Kerala for
inaugurating the event, and Dr Usha S. Nair, Smt Parvathy Devi and Justice
Hariharan Nair for participating in the program. Thank you, supporters of
Pallium India for joining. We are in a way pleased that the hall was
overflowing beyond capacity, and apologise to the few people who could not find
sitting room.
–
KARNATAKA GETS ITS OWN PALLIATIVE CARE POLICY
[HTTP://PALLIUMINDIA.ORG/2016/08/KARNATAKA-STATE-PALLIATIVE-CARE-POLICY/]
Dr Linge Gowda, director of the Kidwai Institute of Oncology (Regional
Cancer Centre) informs that the Karnataka state palliative care policy has come
through.
The department of palliative medicine at Kidwai Institute of Oncology
has also been sanctioned new positions of Associate Professor, Assistant
Professor and Senior Resident, so that they are now ready to start MD course in
Palliative Medicine. The inspection by Medical Council of India happened on
20th August 2016.
CONGRATULATIONS, DR LINGE GOWDA AND TEAM!
–
WHO BEGINS REVISION OF GUIDELINES ON THE MANAGEMENT OF CANCER PAIN IN ADULTS
[HTTP://PALLIUMINDIA.ORG/2016/08/WHO-BEGINS-REVISION-OF-GUIDELINES-ON-THE-MANAGEMENT-OF-CANCER-PAIN-IN-ADULTS/]
A group of international palliative care experts were among those
invited to advise on the revision of the WHO Guidelines on the Management of
Cancer Pain in Adults at WHO Headquarters in Geneva from 28-29 July this year.
The most recent version of WHO’s Cancer Pain Guidelines was published in 1996.
Civil Society organisations were invited to attend as observers of the
process. These included: The International Association for Hospice and
Palliative Care, Médécins Sans Frontiéres, the Pain and Policy Studies Group at
the University of Wisconsin, Physicians for Responsible Opioid Prescribing, the
Union for International Cancer Control, and the Worldwide Hospice Palliative
Care Alliance (WHPCA).
This is the first effort, following the passage of the WHA resolution
67.19 on palliative care in 2014, to develop new global policy on symptom
management. WHO Guidelines on the Pharmacological Treatment of Persisting Pain
in Children with Medical Illnesses were published in 2012.
Read the complete report in ehospice.com
[http://www.ehospice.com/articleview/tabid/10686/articleid/20202/language/en-gb/who-begins-revision-of-guidelines-on-the-management-of-cancer-pain-in-adults.aspx]
_Photo: Dr Stephen Connor / ehospice_
–
INSPIRING CONFERENCE AT KAMPALA, UGANDA
[HTTP://PALLIUMINDIA.ORG/2016/08/INSPIRING-CONFERENCE-AT-KAMPALA-UGANDA/]
Close to 500 registrants from more than 35 countries participated in a
three-day conference of the African Palliative Care Association (APCA) at
Kampala, Uganda, on 17-19 August, 2016, jointly hosted by them and the
Worldwide Hospice Palliative Care Alliance (WHPCA).
India has a lot to learn from Uganda and from Africa as a whole. In the
face of poverty very often worse than in India, they have managed to achieve a
great deal by the strength of team work and tenacity of purpose. How can one
not admire the pioneering spirit of the Nobel Prize nominee, Dr Anne Merriman,
who adopted the country first and then embraced Africa. Hundreds of
enthusiasts, with “fire in the belly” as Anne would put it, lighted the candle
from her – and look where they have reached! Certainly nowhere near excellent
coverage of the continent or even of the country, but certainly they are moving
forward at a steady pace.
The choir raised their voices and sang, “let us raise our candles and
light up the sky!”
An enviable feature of the conference was a pre-conference workshop for
a whole day on 16th August for ministers and their representatives from African
countries. Imagine! Ministers sitting together and reviewing palliative care
activities and progress including action on the World Health Assembly
resolution of 2014 and on the sustainable development goals! The Prime Minister
of Uganda himself attended the event. Not just to inaugurate; but to stay and
take part in the deliberations.
–
ANNE MERRIMAN FOUNDATION-LIGHTING UP THE WORLD!
[HTTP://PALLIUMINDIA.ORG/2016/08/ANNE-MERRIMAN-FOUNDATION-LIGHTING-UP-THE-WORLD/]
An important side event at the APCA conference
[http://palliumindia.org/2016/08/inspiring-conference-at-kampala-uganda/] was ;
the launch of the Anne Merriman Hospice foundation on 17th of August 2016 – an
invigorating experience chaired by Dr Emmanuel Luyirika, executive director of
APCA.
The full throated choir sang: "
_“When my life is finally measured in months, weeks, days, hours,_
_ I want to live free of pain, free of indignity, free of loneliness._
_ Give me your hands_
_ Give me your understanding_
_ Give me your Love_
_ Then let me go peacefully_
_ And help my family to understand”._ "
In her inspiring address, Dr Anne Merriman recounted the story of a
dying girl who wanted pain relief and Coca-Cola. A nurse provided morphine and
Coca-Cola. To Anne, that is the Essence of palliative care.
I am taking home a pearl from Dr Anne Merriman’s address, quoting
Bishop Desmond Tutu: “You cannot be human all by yourself”.
–
SCALING UP PALLIATIVE CARE INITIATIVES UNDER NATIONAL HEALTH MISSION
[HTTP://PALLIUMINDIA.ORG/2016/08/SCALING-UP-PALLIATIVE-CARE-INITIATIVES-UNDER-NATIONAL-HEALTH-MISSION/]
A two-day meeting on “Scaling up Palliative Care Initiatives under
National Health Mission: A National Consultation” was held on 11th and 12th
August 2016 at National Institute of Health and Family Welfare (MoHFW), New
Delhi. MoHFW officials including Prof Jagdish Prasad, DGHS, Dr. Alok Mathur,
Mr.Satyanarayan Dash, and Dr Fukru Tullu, team leader, NCD, WHO Country office
for India attended the program. Dr Nandini Vallath represented the WHO
Collaborating Centre at TIPS.
The National Program for Palliative Care (NPPC) is now operational
since 2012; however budget allocation has not been made and funds are now
available for states directly from the NCD flexipool. Programme implementation
plan (PIP) for palliative care needs to be submitted by the states. Model PIP
is available on the website of the Directorate General of Health Services
[http://dghs.gov.in/] . ;
Palliative Care still lacks clarity despite being in practice in India
for two decades. The group emphasized the need to include all diseases and not
just cancer under the purview of palliative care.
A detailed action plan was drawn up for each state and the person(s)
responsible for this identified.
–
THE SIXTH NATIONAL CANCER GRID MEETING TATA MEMORIAL HOSPITAL, MUMBAI
[HTTP://PALLIUMINDIA.ORG/2016/08/THE-SIXTH-NATIONAL-CANCER-GRID-MEETING-TATA-MEMORIAL-HOSPITAL-MUMBAI/]
_“This is the era of evidence-based medicine._
_ Coming together of the cancer centres in India is a great step and the
tremendous possibility of pooled resources for impacting the quality of cancer
care is way beyond anything possible through individual or institutional
efforts.”_
These words of appreciation were spoken by Dr Soumya Swaminathan, the
director of the highest academic office in India, ICMR, on the occasion of the
6th meeting of the National Cancer Grid (NCG) held at Tata Memorial Hospital on
the 9th and 10th of Aug 2016.
NCG is a growing network of cancer centres in the country, with 86
institutional members currently, that aims to reduce the disparities in the
standards of patient care amongst various geographic regions of India. This is
attempted through development of implementable evidence-based management
guidelines for common cancers. These include a systematic method of data
capture of every patient being treated at a cancer center. The clinical
guidelines of NCG serves the dual purpose of assessing patterns of presentation
(including common cancers, stages of presentation, etc.) and needs assessment
of individual centers.
Exchange of expertise and mentoring between the centers and
collaborative research are other prime objectives. National Cancer Library
under the NCG provides open access to ample scientific literature for all the
registered individual and institutional members to encourage and support high
quality clinical and research practices. Medium and long-term steps include a
voluntary process of audit and peer review[1].
Dr Soumya Swaminathan, who inaugurated the NCG website, emphasized the
responsibility of keeping data on public domain and looked forward to the
coming together of cancer registry and the ICMR Registry.
The uniqueness of this year’s meeting was its emphasis on developing
palliative care services across the centres of the NCG network. A breakout
session that included experts in the field as well as oncologists with
interest, discussed and presented the strategies towards achieving this
objective. Dr Mary Ann presented a hub and spoke model of extending the
expertise after an initial ‘gap analysis’ across the centres. A direct
possibility to incorporate palliative care components within the clinical and
research guidelines developed by the NCG was also discussed.
We are especially happy to note these possibilities that NCG has opened
for integrating the ‘care’ component within the comprehensive cancer management
in India.
An entire session was devoted to inform practical IT based solutions
for data access and technological support available for simplifications in the
process of patient care.
There was a detailed presentation on Education for Community Health
Outcome – the ECHO model for moving knowledge to where it matters; rather than
moving patients to tertiary centres away from their base. It is a solution when
knowledge is trapped in the heads of few who are practicing in major cities and
urban centres beyond the access of most needy patients who are spread all over.
ECHO appears to be a viable model for education in palliative care in the
Indian scenario. Here experts from varied geographical locations organise case
based discussions at regular intervals and impact capacity building.
We are grateful to Dr C. S. Pramesh and the entire organizing team of
NCG, for making Trivandrum Institute of Palliative Sciences a member and feel
strengthened and inspired by knowing that terrific leaders and visionaries are
in positions that matter!
[1] Indian J of medical and paediatric oncology Jul 2014;33(3)
–
KEM HOSPITAL TAKES A STEP TOWARDS PALLIATIVE CARE
[HTTP://PALLIUMINDIA.ORG/2016/08/5070/]
“I don’t know how to change the system; but what I learned during this
workshop will reflect in my professional approach in caring for all my
patients”, said a doctor who attended a two-day educational program on
palliative care at KEM hospital, Mumbai on 15th and 16th July.
The program was organized by the department of Humanities of KEM
hospital, in collaboration with Pallium India’s Trivandrum Institute of
Palliative Sciences (TIPS), with the mission of its WHO Collaborating Centre to
improve access to pain relief and palliative care. The program, which was
primarily meant for undergraduate students, was attended by a large number of
nurses and doctors, including post graduate students.
The enthusiasm of the attendees was palpable. As reflected by Dr Lopa
Mehta’s comment, “Let us take this forward; this has to be integrated here in
KEM hospital,” and in the Dean Dr Avinash Supe’s words, “I am interested in
improving availability of essential narcotics in KEM hospital.”
The experience tells us again that a short two-hour sensitisation
program may have its value, but we need to go in deeper depth if we are really
to effect any change. Congratulations to Dr Nandini Vallath for initiating this
activity and our thanks to all the faculty who contributed.
Dr Nandini reports that an important outcome from the meeting is that
KEM, in its annual intercollegiate debate, has chosen the topic “The future of
medicine does not lie in technology but in the humanities and enhanced clinical
skills”.
–
NEW PALLIATIVE CARE SERVICE OPENED IN MIZORAM
[HTTP://PALLIUMINDIA.ORG/2016/08/NEW-PALLIATIVE-CARE-SERVICE-OPENED-IN-MIZORAM/]
Pallium India collaborated with Synod Hospital in Aizawl, Mizoram to
start a palliative care service. This is Pallium India’s second project in
Mizoram. Ten years ago, we had helped establish a palliative care unit in the
Regional Cancer Centre in Aizawl, under the leadership of Dr Jeremy Pautu.
On the 30th of August, we helped conduct an opioid access workshop.
Unlike the usual opioid access workshops that we do, here that part of the work
was easy. The Drug Controller was very well-informed. There were no issues on
that subject brought up during discussions, despite the background of a high
incidence of addiction in Mizoram.
There was a very healthy discussion on involvement of voluntary
organizations and on reaching out to the community, much of it led by Dr Jeremy
Pautu, Dr Eric Zomawia of National Health Mission and Dr Sanghluna Renthlei.
We had a pleasant surprise. The health minister Lal Thanzara not only
attended the meeting, but stayed on for an hour and a half. We have high hopes
for Mizoram.
Thank you Dr Sanghluna for organising the event and for leading the
palliative care program. Thank you Dr Lalchhanhima Ralte for connecting us with
this institution in the first place and for reaching out into the community.
–
INDIAN ALLIANCE OF PATIENT GROUPS (IAPG) MEETS IN DELHI
[HTTP://PALLIUMINDIA.ORG/2016/08/INDIAN-ALLIANCE-OF-PATIENT-GROUPS-IAPG-MEETS-IN-DELHI/]
People with health issues (often we call them patients for want of a
better term) must be on the forefront of health planning and advocacy. After
all, health care is all about them, is it not?
The Indian Alliance of Patient Groups (IAPG), an umbrella body of 12
organizations, met up in New Delhi on 18 August 2016. Dr Geeta Joshi,
palliative care physician and deputy director of the Regional Cancer Centre at
Ahmedabad, represented Pallium India.
We thank Dr D S Ratna Devi, founding member of IAPG and Founder & CEO,
DakshamA Health, for this important initiative.
–
AFTER A PAUSE, LIFE GOES ON [HTTP://PALLIUMINDIA.ORG/NEWSLETTER]
_C. MAYA WRITES IN THE HINDU:_
Life can change in a moment … tomorrow, an accident or an illness could
render you disabled, without the use of your arms or limbs.
Nothing in your imagination can prepare you for life after disability,
when suddenly, you cannot independently do any of the things that you normally
used to.
“We read about innumerable road accidents daily. But only the dead make
the news. Have you ever thought how life would be afterwards for those people
who survive these accidents with grievous injuries, who might have been
crippled or bed-ridden for life?,” asks Ashla, a paraplegic and a volunteer
with Pallium India.
Who better than Ashla would know about the isolation and despair of
suddenly losing one’s mobility.
Life had come to a full stop for this young woman, an MCA holder, one fine day
when she fell off a train. Her resilience and spirit and the helping hand of
Pallium India’s chairman, M.R. Rajagopal, helped her find her feet again.
But for hundreds of others, who are left crippled for life, the lack of
that helping hand and emotional support often proves to be their undoing
UNTOLD MISERY
“Once they leave the hospital, everyone including doctors as well as
friends and family, somehow assume that life will once again fall back into
place. But few are able to accept their fate stoically and go through severe
psychological stress and depression,” says Dr. Rajagopal.
Psychological issues aside, it is not easy to start life on a wheelchair one
morning. One needs training to learn how to get into and out of the wheelchair
independently, how to use the toilet, bathe and dress independently, to remove
the urine bag etc. Early rehabilitation can do wonders to help these people.
RESIDENTIAL PROGRAMME
The trauma that the spouse goes through is another untold tragedy.
Pallium India decided to take up a rehabilitation scheme last year after they
had to deal with some tragic situations wherein the spouses of some young
paraplegic patients committed suicide.
With the Social Justice Department approving funding for the scheme, Pallium
India today runs this residential rehabilitation programme at Arumana Hospital,
Perunthanni, for the disabled, wherein, the patient and his/her family or care
giver are given physical training, counselling and support so that the
wheelchair-bound person can become independent once again.
Jeevathaalam
On Friday, the scheme was given a name — Jeevathaalam — and formally
inaugurated by Social Justice Minister K.K. Shylaja.
The patient and spouse/family member can stay at the hospice for a month.
During this time, they undergo psychological and physical evaluation and
receive training in daily living and counselling on issues – spiritual, sexual,
diet guidance and physiotherapy. At a time, three patients can be accommodated.
So far some 18 patients with paraplegia have utilised this facility.
Read the article in The Hindu
[http://www.thehindu.com/todays-paper/tp-national/tp-kerala/after-a-pause-life-goes-on/article8990286.ece]
–
NO MEAN FEAT [HTTP://PALLIUMINDIA.ORG/2016/08/NO-MEAN-FEAT/]
Ashla Rani, volunteer for Pallium India, shares this news of Sidhartha
Babu with us:
Sidhartha, a paraplegic shooter, was initially denied permission to
participate in the National Games. But he persisted, and later was granted
permission to compete in the prone category. And he has emerged as a state
champion, rubbing shoulders with top professional shooters. Read the news in
The New Indian Express: Beating severe odds to emerge champ
[http://www.newindianexpress.com/cities/thiruvananthapuram/Beating-severe-odds-to-emerge-champ/2016/08/22/article3590802.ece]
Ashla, herself a quadriplegic and a part-time software engineer, writes:
“Dear Sidhartha, You made my day. Of course the first thought was, Kudos,
friend, very happy for you. What an achievement! You make me realise that it is
true; sky is indeed the limit. Nothing can limit you unless you limit yourself.
Keep inspiring!”
–
ANUBHAVA SAKSHYANGAL – EXPERIENCES OF A PALLIATIVE CARE VOLUNTEER
[HTTP://PALLIUMINDIA.ORG/2016/08/ANUBHAVA-SAKSHYANGAL-EXPERIENCES-OF-A-PALLIATIVE-CARE-VOLUNTEER/]
[http://palliumindia.org/cms/wp-content/uploads/2016/08/Anubhava-Sakshyangal-1.jpg]
Dr N. Ajayan, a palliative care volunteer, drank deeply from the cup of
suffering that he saw around him. From those life experiences comes this book
of stories, titled “Anubhava Sakshyangal”. Dr Ajayan got the book published at
his own expense, but the proceeds from its sale go towards serving the patients
whom Pallium India cares for. The book that costs ₹100 is published by Kisalaya
Publishers and is available at Pallium India office at Trivandrum. Please
contact us [http://palliumindia.org/contact/] if you are interested in ;
purchasing this book.
Thank you Dr Ajayan, for your book and for the kind gesture.
–
DR DAVID BRUMLEY ORDER OF AUSTRALIA
[HTTP://PALLIUMINDIA.ORG/2016/08/DR-DAVID-BRUMLEY-ORDER-OF-AUSTRALIA/]
Our friends from Australasian Palliative Link International (APLI)
inform us that Dr David Brumley, a dear friend of palliative care in India, has
been awarded a Medal in the General Division (OAM) in the Queen’s Birthday
Honours List for 2016.
Anil Tandon, Chairman of APLI, writes in the APLI Newsletter
[http://apli.net.au/newsletters/apli-newsletter-august-2016/] : ;
“The Queen’s Birthday Honours List recognises a diverse range of
contributions and service across many fields, and highlights an individual’s
significant achievements and service to the community.
David is a most worthy recipient of this award for his outstanding
service to palliative care, not just here in Australia but to our friends in
neighbouring countries. David was previously secretary of APLI. He has worked
for many years teaching palliative care in Malaysia, Vietnam and Japan. He has
been an outstanding mentor within Project Hamrahi, leading 4 teams to provide
collegial support and teaching at the Cachar Cancer Hospital and Research
Centre in Silchar, Assam.”
CONGRATULATIONS, DR DAVID BRUMLEY!
–
WHEN PAIN IS MEDICINE [HTTP://PALLIUMINDIA.ORG/2016/08/WHEN-PAIN-IS-MEDICINE/]
“We can’t stop treatment. We are supposed to do everything we can to
keep the patient alive,” says the doctor about the man who has multiple organ
failure, has “blood and urinary infection” and whose “kidneys are not
functioning”.
The fight to prolong life at all costs continues. The wife and the
daughter are allowed into the intensive care unit for five minutes each in the
morning and evening. The daughter says, her 84-year old father, her best
friend, was “wailing and roiling in pain, all I wanted to do was run, somewhere
far, where his cries wouldn’t reach me.”
The man has many tubes inserted into his body. He cannot turn his head
to the left because of the catheter going into his neck. He is in agony after
every dialysis, in all “a harrowing experience.”
She stands by his side, “trying to convince all those who seemed to
have a say on his life that it was a cruel line of treatment they were
imposing.” The man got no sedatives or pain killers “for fear his weak heart
could not take more chemicals.”
The daughter feels that the sight of him stripped of any sense of
comfort or dignity on that hospital bed was unbearable. The doctor says the
situation is bad. ‘‘If the situation is that bad, why can’t you get rid of all
these wires and needles, and give him some sedative so he can sleep?’’ asked
the daughter. But the doctor feels that he is supposed to do everything he can
to keep the person alive.
“I didn’t get it,” writes the daughter. “Why keep the patient alive for
a few more days, if it involved excruciating pain? Keep the patient alive for
whose benefit?”
The saga continues. In hospital after hospital, all through India,
patients are kept on life prolonging treatment even when they have no hope of
recovery, because doctors feel they need to do everything to keep the person
alive.
Doesn’t the problem lie right there? Is there clear understanding about
what is the primary purpose of medical treatment? Is it to keep the heart
beating at all costs?
In India, a new law is contemplated on end of life care. The original
draft law published on the government’s website had made advanced directives
invalid. We hope the draft is being corrected. There is a lot of discussion
about euthanasia. While it goes on, no one talks about our right – yours and
mine – to die a natural death, with some dignity when cure is not possible. The
medical system doesn’t seem to know at all what its duty should be.
Isn’t it time we suspended the discussions on euthanasia and law, and
go deep down into the basic issue – what is the duty of the medical profession?
We need it there in golden letters, bold enough for every medical student and
doctor to see that our duty is to cure when possible, relieve suffering and
provide comfort, permitting dignity and recognising that death is the
inevitable consequence of life, and that a natural death is NOT a failure of
the medical profession.
Please read the article by Sindhu S, Pallium India’s volunteer,
published in _The Hindu_: When Pain is Medicine
[http://www.thehindu.com/opinion/open-page/article8960602.ece] ;
–
FINDING PEACE BEYOND THE PAIN
[HTTP://PALLIUMINDIA.ORG/2016/08/FINDING-PEACE-BEYOND-THE-PAIN/]
“During my morning rounds as I enquired about his pain, his eyes welled
up with tears. As I asked gently, “Would you like to talk?” he started to cry,
great heaving sobs filled with pent-up suffering.”
Dr Seema Rao, consulting psychiatrist from Mumbai, narrates this
account of Sunder, a 38-year old driver who came to her hospice. He was
suffering from penile cancer that had metastasized to the lymph nodes, lungs,
and liver. “I don’t think you can do much for me. I have seen so many doctors,
taken so many medicines, nothing helps. I want to die,” he said, his voice
resonating with despair.
The narrative titled “ Finding Peace Beyond the Pain
[http://www.tandfonline.com/doi/full/10.1080/15360288.2016.1204408] ” describes ;
the journey of Sunder in the hospice. A caring husband and a doting father, he
came to the hospice by force, in immense pain and suffering. He stayed on by
choice and found the peace he was looking for, ably supported by the dedicated
hospice team. He was able to live the last few months of his life as
comfortably as was possible, and left this world in peace, with dignity. The
narrative reiterates the belief that hospice, with its philosophy of active
“total care” is an ideal place for addressing the concept of “total pain.”
Read the complete narrative published in the Journal of Pain and
Palliative Care Pharmacotherapy
[http://www.tandfonline.com/doi/full/10.1080/15360288.2016.1204408] . ;
The Journal of Pain and Palliative care Pharmacotherapy is an indexed
journal that has made the narratives free access. The journal welcomes your
Narratives on Pain, Suffering and Relief. 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 [mailto:info@xxxxxxxxxxxxxxxx] ;
–
LAST WORDS [HTTP://PALLIUMINDIA.ORG/2016/08/LAST-WORDS/]
One of the videos shown during a two-day workshop
[http://palliumindia.org/2016/08/5070/] in KEM hospital was IAPC’s “Last Words” ;
[http://palliumindia.org/2016/02/the-lastwords-ever-spoken/] . One of the ;
students who attended the program commented, “Anyone who is not moved to
reflect on their practice differently after seeing the last words probably has
a heart of stone.”
Indeed, the message that the Last Words video conveys is really
powerful. Hats off to everyone who worked together to make this video possible.
–
WANTED MEDICAL OFFICER FOR PALLIATIVE CARE SERVICES AT JAIPUR
[HTTP://PALLIUMINDIA.ORG/2016/08/WANTED-MEDICAL-OFFICER-FOR-PALLIATIVE-CARE-SERVICES-AT-JAIPUR-AND-JODHPUR/]
* Qualification: MBBS
* Salary: INR 40000 per month
* Type of appointment: Contractual for One Year, can be extended for
two more years
* Upper age limit: 65 years
* Preference to candidates with palliative medicine or Oncology
exposure
* Computer familiarity desirable
_CONTACT OR APPLY TO:_
R. K. Birla Cancer Center, SMS Medical College Hospital, Jaipur
Dr Hemant Malhotra drmalhotrahemant@xxxxxxxxx
[mailto:drmalhotrahemant@xxxxxxxxx] Dr Ashwin Mathur drmathurashwin@xxxxxxxxx ;
[mailto:drmathurashwin@xxxxxxxxx] 09829038756 ;
For more openings, visit our Careers
[http://palliumindia.org/about/careers/] page. ;
–
KERALA STATE HEALTH DEPARTMENT MULLS PALLIATIVE CARE SCHEMES IN ALL DISTRICT
HOSPITALS
[HTTP://TIMESOFINDIA.INDIATIMES.COM/CITY/THIRUVANANTHAPURAM/HEALTH-DEPARTMENT-MULLS-PALLIATIVE-CARE-SCHEMES-IN-ALL-DISTRICT-HOSPITALS/ARTICLESHOW/53706929.CMS]
_THE TIMES OF INDIA REPORTS ON AUGUST 15, 2016:_
Thiruvananthapuram: The health department has drawn up a plan to
implement the pain and palliative care scheme in all district hospitals across
the state. The proposal submitted by director of health services has been
approved by the working group of the department. The scheme, which aims to
promote a holistic approach to healthcare, will be implemented with the support
of National Health Mission (NHM).
As per estimates, there are around 59 lakh people in the country who
are in need palliative care but the required facilities reach only less than 2%
of them.
The scheme envisages establishment of rehabilitation units at Kottayam, Kollam
and Idukki district hospitals. District hospitals in Thiruvananthapuram,
Malappuram, Ernakulam, Thrissur and Kozhikode would get Rs 2.5 lakh each for
purchase of medicines and consumables and infrastructure development.
Special funds would be earmarked for hospitals in Palakkad, Kannur,
Kollam, Alappuzha, Idukki, Kottayam, Wayanad and Pathanamthitta for improving
their secondary palliative care units. Also, hearing aids would be provided to
required persons. The five city corporations in the state would be handed over
the funds to purchase medicine and equipment for palliative care units in urban
areas.
The proposal also moots for incentives to palliative care promoters and
honorarium for doctors and supporting staff. Meanwhile, it was decided that
‘Sayam Sandhya’ will be organized in all districts on October 1, as part of
elderly care day observance. The programme includes seminars, gatherings, mass
walk, health check ups, etc.
Read the news…
[http://timesofindia.indiatimes.com/city/thiruvananthapuram/Health-department-mulls-palliative-care-schemes-in-all-district-hospitals/articleshow/53706929.cms]
–
UPCOMING EVENTS [HTTP://PALLIUMINDIA.ORG/COURSES/]
* SEPTEMBER 5, 2016: Six weeks Certificate Course in Palliative
Medicine for doctors and nurses at Trivandrum
* OCTOBER 3, 2016: 1 month Certificate Course in Palliative Medicine
for doctors and nurses at Hyderabad
* OCTOBER 8, 2016: World Hospice and Palliative Care Day: Get-together
of patients and families at Trivandrum
* OCTOBER 30, 2016: Musical Night featuring M. Jayachandran and team,
at Kochi.
For details, contact: 9746745502 / info@xxxxxxxxxxxxxxxx
[mailto:info@xxxxxxxxxxxxxxxx] ;
Find out more about our courses at: http://palliumindia.org/courses/ ;
[http://palliumindia.org/courses/] ;
–
INTERNATIONAL VISITORS [HTTP://PALLIUMINDIA.ORG/PROGRAMS/VISITORS/]
We welcome international visitors at Pallium India and appreciate the
support from our colleagues around the world. We request that you contact us at
least 2 weeks prior to your visit so that we can make the necessary
arrangements. Sorry; we would discourage “drop-ins” for fear of the impact on
patient care.
We have observership programs for interested professionals and
students, collaborative visits, and long term placements. Click here
[http://palliumindia.org/programs/visitors/] for more information. Contact: ;
visitors@xxxxxxxxxxxxxxxx [mailto:visitors@xxxxxxxxxxxxxxxx] ;
–
JOIN OUR FACEBOOK PAGE [HTTPS://WWW.FACEBOOK.COM/PALLIUMINDIA]
Pallium India’s Facebook page has over 5000 Likes. We regularly post
articles related to palliative care from around the world. Click here to Like
our page [https://www.facebook.com/palliumindia] ! We’re also on Twitter: ;
@palliumindia [https://twitter.com/palliumindia] ;
–
PALLIATIVE CARE INFORMATION CENTRE [HTTP://PALLIUMINDIA.ORG/INFO-CENTRE]
Contact Pallium India’s Information Centre (9 am to 12 noon) for
information related to palliative care and about establishments where such
facilities are available in India. Telephone: +91-9746745497 or E-mail:
info@xxxxxxxxxxxxxxxx
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/ ;
[http://palliumindia.org/info-centre/] ;
–
PARTING SHOT
WHICH IS MORE CRUEL – A POISONOUS SNAKE OR THIS “POLICY”?
[HTTP://PALLIUMINDIA.ORG/2016/08/WHICH-IS-MORE-CRUEL-A-POISONOUS-SNAKE-OR-THIS-POLICY/]
The Calcutta edition of the “Telegraph” on 28 August 2016 carried a
story, “ Snakebite and oxygen-cruelty claim boy
[http://www.telegraphindia.com/1160828/jsp/bengal/story_104926.jsp] ”. ;
The boy, bit by a branded krait, treated in a government hospital at
Birbhum needed ventilator support and was referred to a medical college
hospital with facilities for it. He would need transportation with oxygen, the
family was told, and so they organized an ambulance with oxygen.
But the ward nurses did not permit the oxygen cylinder to be carried
during the transfer to the ambulance. The family in desperation, tried to rush
him through the few hundred metres to the ambulance, but as the oxygen was
removed, the child started gasping and died on the way.
Shocked? Don’t be. This kind of thing is not unusual. Did you read the
story that we had presented to you written by Latha Srikanth – “ A Tragedy of
Errors [http://www.tandfonline.com/doi/full/10.3109/15360288.2016.1173757] ”? ;
Latha described another death from the combined cruelty of an insensitive
medical system, misinformed, superstitious and misguided family members – all
together being much more cruel than the snake.
Well, in the present case, read the response from the hospital as
quoted by the Telegraph. The nursing superintendent of the hospital said
“oxygen cylinders were not allowed to be taken out of the hospital ‘as a matter
of policy’”. And the reason for the policy: “We have no one to bring the
cylinders back”.
HAIL POLICY!
