Celebrating 15 years of caring for lifeCIPLA PALLIATIVE CARE AND TRAINING CENTRE

Newsletter of Cipla Palliative Care and Training Centre

carebeyondcureJune 2012www.carebeyondcure.org

EAR 1995. Palliative care was hardly known in many parts of our Y

country. Shanti Avedna Ashram of Mumbai, the first hospice in India, approached Cipla, the pharmaceutical company, for help in getting m o r p h i n e s u l p h a t e t a b l e t s . T h e i r p a t i e n t s desperately needed it for pain relief. Cipla obliged with low-cost morphine tablets.

That exposure and experience prompted Cipla to do more. Thus was born Cipla Palliative Care and Training Centre.

We admitted our first cancer patient on May 1, 1997.

We began with some clear concepts. It had to be a team effort. It needed different skills, all of them equally important. We took the help of international experts in palliative care. Some of our team members went to England for training and experts from there came to the Centre to get us started.

The patient and his comfort was a lways the pr ime consideration right from the beginning. The selection of the land was deliberate; we wanted to create an oasis of care in what was then a barren tract. We were sure the wards had to open out into a garden, complete with a fountain and play area for

Mohan Dharia planting thisvery tree on April 8, 1997

4

I have been referring patients to Cipla Centre and they are happy with the service they get. They are particularly happy about the physiotherapy support. They are willing to travel for long to avail of the free lymphoedema clinic.

Some patients feel that I am abandoning them when I refer them to Cipla Centre. I explain to them that I will continue to help them even as they avail of the free services provided by Cipla Centre.

I agree that palliative care should start from the time of diagnosis. There has been greater awareness of palliative care in the last decade.

Dr Minish Jain, Medical Oncologist

I was in the midst of treating and caring for a close family friend who was suffering from cancer. I was not fully equipped for that. Fortunately, the course at Cipla Centre was announced at that time. I grabbed the opportunity and underwent the course. It definitely helped to help and reach out to the patient in the right manner right until her death. Hats off to the team at Cipla Centre, who handle patients with such dedication and passion. I shall definitely refer my patients to Cipla Centre, whenever necessary.

Dr Shyam Kagal, Physician

I attended a two-day w o r k s h o p o n communications at Cipla Centre in 2008. My view is that palliative care starts right from diagnosis. It is very much necessary to start caring for the patient with a holistic approach right from diagnosis. It plays a very important role in treatment.

Dr Vishnu Hegde, Pediatrician

I was quite impressed by what I saw in the Centre, the care and love extended to the patients, the manner in which they are being helped to cope with pain and suffering and above all the cleanliness of the premises.

Unlike some of the other small cen t res I have v i s i t ed e lsewhere, there is an atmosphere of peace and hope in this place which strikes one as one goes round to different wards. I congratulate the Foundation for taking up this innovative humanitarian project.

Mr. P C Alexander, then Governor of Maharashtra, after his visit to the Centre on August 3, 2000

I am proud to have been closely associated with the Centre in its initial days, when N A Raje was the Managing Trustee.

One of the beautiful aspects is the wards being called by names of flowers and the idea of using bed sheets and curtains in matching floral themes.

I remember I had requested many VIPs to visit our Centre. One of them who obliged was P C Alexander, who was then the Governor of Maharashtra.

If I come across cancer patients who can benefit from palliative care, I shall definitely direct them to Cipla Centre.

Dr Mohan Dharia, Founder-President, Vanarai, Pune

15 YEARS – HOW THE FIGURES SPEAKMay 1997 to April 2012

I am totally inspired by Cipla Centre. My patients, especially those suffering from breast cancer, are benef i t t ing from the services of the Centre. I would like to start a place like Cipla Centre in my area.

Dr. Padma Iyer, Surgeon

What they said

2

142

2067

309

829

753

418

797

911

163

357

229

218

612

No. of patients

since inception

7908(till

June , 2012)

30

Brain

Prostate

Sarcoma

Primary Unknown

Lungs

Leukemias

Abdomen

Gastrointestinal

Genitourinary

Breast

Cervix

Head & Neck

Others

January 1998

July 1998

June 2000

January 2003

October 2006

February 2007

June 2008

July 2008

December 2008

January 2009

March 2011

October 2011

January 2012

Home care visits by volunteers. The objective is to observe conditions at home, enquire after well-being of patient and offer support.

First training course for nurses. Eight years later, YCMOU-affiliated course for patient-assistants started.

Training courses for doctors and nurses introduced.

Doctors and nurses join home care team. This makes it possible to provide comprehensive and continuous care, to those who have been discharged from Cipla Centre and also to those who are unable to come to the Centre.

For the first time, Cipla Centre joins organisations in 60 countries in celebrating World Palliative Care Day. Now an annual feature, the day is marked by a series of events to create greater awareness about palliative care.

Lymphoedema clinic started to provide free service to in-patients and out-patients.

First IAPC course on Essentials in Palliative Care for doctors and nurses at Cipla Centre.

Inauguration of OPD enables us to strengthen our association with existing patients and provide counseling to many who do not seek or require admission.

Computerizat ion of documentation completed. Helps faster capture of more comprehensive information, enables team to spend more time with patients and facilitates research.

Cipla Centre plays host to the first meeting of the newly-registered Maharashtra Chapter of Indian Association of Palliative Care (IAPC).

The first external OPD starts in Yashwantrao Chavan Memorial Hospital. Now, Cipla Centre conducts free OPDs in two more hospitals—KEM and Kamla Nehru.

Launched on World Palliative Care Day, the Helpline has helped the Centre to reach out to nearly 500 patients till July 2012.

Centre recognized as a Leading Palliative Care Organization by Institute of Palliative Medicine, San Diego, USA.

Milestones

Here, even the plants, as

they sway with the breeze,

speak of living joyfully and

give meaning to life.

For the medical man, this

is a pilgrimage. The real

meaning of care is learnt

only in such temples.

Before I came to Cipla

Foundation, I was very

much mentally disturbed

and peace was nowhere to

be found. On entering this

Centre, a special calmness

e n v e l o p e d m e . T h e

invaluable care one receives

here dispels all sadness and

fills one with inner strength

and mental courage.

The moment we entered this

place, we felt as if we were

in a resort. The whole

a t m o s p h e r e a n d t h e

g r e e n e r y a r o u n d i s

something we never dreamt

of.

L N Kadale, patient

Lt. Gen. (Dr) M A Tutakre,

Armed Forces Command

Hospital, visitor

Kanoji Jagdale, patient

Pushpa Patil, patient

July 1998

January 2003

October 2006

February 2007

January 2009

October 2011

3

December 2008

Fresh faces, greater gusto

here were several new faces on stage to add music and dance to yet another colourful Annual Day Tprogramme on May 12, 2012. And as Managing

Trustee S V Iyer put it, they brought the "same dedication and enthusiasm" that they display in caring for patients to their performance on stage. As always, two days of games that challenged the mind more than the body were part of the annual celebration.

This Annual Day assumed added significance, it being the 15th year of caring for the Centre. “While we enjoy the evening of fun and frolic, we have the opportunity to look back at our achievements, learn from the challenges we have faced and chart out the future with renewed dedication and vigour. It is also an occasion to express our gratitude to all the people who have participated and supported us in our efforts to enhance the quality of life of our patients,” Iyer said.

Here are some glimpses of the evening.

Welcome songPrachee Sathe, Suvidha More, Basanti Nindankar

Group Dances - Wajale Ki BaraMamta Nandedkar, Anusha Gudala

Chance pe DanceMamta Nandedkar, Bhuvaneshwari Mishi

Radha Hi BawariMamta Nandedkar, Jana Pawar, Anusha Gudala, Sangeeta Athawale, Sagar Gore

Desh RangilaSagar Gore, Jana Pawar, Bhuvaneshvari Mishi, Mamta Nandedkar, Anusha Gudale, Suvarna Sanas

Story tellingVolunteer Avinash Badwe

Skit - It's a Ad-mad WorldAnuradha Walke, Suvidha More, Vandana Kode, Mugdha Angal, Prachee Sathe

BhajansSiddheshwar Ghongade (patient) and group from Sangola

Solo danceSudipta Majumdar

PERFORMERS

WINNERS IN GAMES

Memory gameAmbadas Pathade, Suvarna Rahinj, Suvarna Sanas

Knotting the ropeMadhu Shinde, Ramnivas Prajapati, Sagar Gore

Lock and keyAnjana Suryavanshi, Ramnivas Prajapati, Mangal Dhemre

Pin chainMadhu Shinde, Shakuntala Waghmare, Anjana Suryavanshi

CoinsMangal Dhemre, Ramnivas Prajapati, Anjana Suryavanshi

Musical Chairs Noorjahan Pathan, Ramnivas Prajapati, Deepali Prajapati

15th Annual Day: May 12, 2012

children. We were not building a hospital and definitely not a hospice. We were creating a home away from home, to promote health and enhance life.

We work to provide relief from pain and other symptoms caused by cancer or its treatment. Our aim is to improve the quality of a patient's life and provide support to the patient and family during and after the treatment. We believe that palliative care has a role to play right from diagnosis till bereavement and beyond; a view that is being increasingly endorsed by physicians across the world. We have a holistic approach; we treat the person as a whole. That involves caring for mental and emotional health, and catering to spiritual needs.

According to WHO data, in our country there

Celebrating 15 years

are 25 lakh cancer patients at any given time. Unfortunately, 70% of these cancer patients require palliative care, as a majority of cases are diagnosed at an advanced stage. Only 0.4% of these patients have access to palliative care.

Cipla Centre has been making concerted efforts to spread awareness about palliative care by informing and educating. We conduct regular courses for doctors, nurses, social workers, NGOs and others. We use every opportunity to talk about palliative care in towns and villages.

Till June 2012, Cipla Centre has cared for nearly 8,000 patients and their families. But the number that keeps us going is in millions; those near and far who still need our care. There is a long way to go.

1

Setting an example in dedication and hard work, the best performance award winners: (From left) Rekha Sarode, Anjana Suryavanshi and Ashok Kalokhe

Best performance award winners

ithabai Waghmode was 3 years of age when she was diagnosed with Vschwannoma, in 2000. Soon, a

C T scan r evea l ed r i gh t o rb i ta l rhabdomyosarcoma.

When she was admitted to Cipla Centre on September 11, 2000 the little girl had a bulging right eye that oozed and caused her severe pain. A delayed surgery had left her in that state. She had gone back to school in her

village after the surgery. But the d i s f i g u r e m e n t m a d e h e r t h e centre of attention and her teachers suggested that she was be t te r o f f studying at home. Even that couldn't happen because of the pain.

Her pain under control after a couple of days at Cipla Centre, it did not take long for Vithabai to

discover new games (including hitching rides on wheelchairs) and win hearts. A couple of weeks later, she was discharged after her pain was fully under control. Her father would return after every 15 days to take medicines.

In 2004, thanks to one of the volunteers at Cipla Centre, Waghmode met a surgeon, who performed a palliative partial debulking of the rhabdomyosarcoma. That brought her considerable relief and she stopped her morphine after a while.

Tamanna (her official name in school) is now studying in the ninth standard. She is among the brighter students in her school and a favourite of her teachers.

Her father remembered, “I was under tremendous pressure to give up on her. Many people tried to dissuade me from continuing the treatment because she was my daughter and not my son.”

Tamanna knows what she wants to be. “I remember what my father and I had to go through. I know the needs and difficulties of such patients. I will become a doctor and help them.” Her smile does nothing to hide her steely determination.

Tamanna has set sight on helping many Vithabais

4 5

hraddha Kumbhar was crying out in severe pain when she was brought to SCipla Centre for the first time. She did

not want to get admitted. She remained in the OPD all day. Doctors and counsellors took turns to talk to her, gently, patiently. Finally, she was convinced. Yes, she and her parents needed more help than what was possible at home.

She did go back home a couple of times. She was also cared for at home by the Centre's t eam. At both p l a c e s , t h e approach was the s a m e . T e l l S h r a d d h a t h e truth to the extent possible; she was brave enough to face it.

After admission, when the bouts of pain subsided, the

true Shraddha surfaced—bright, chatty and full of questions.

She had small-round-cell tumour with skeletal and lung metastases. How could one fit that in an answer to a 12-year old? So, her questions kept coming, rapid-fire.

"What has happened to me? When can I go to school? Will I be able to walk? Will I always need this pipe to pass urine? Can I never play with my (younger) brother? Why do my

Can I become a doctor?

Let us work together – NGO meet

parents cry when they see me? Why do all of you lie to me? Will I never be able to go home? When can I go to my friend's house to play? Can I become a doctor?"

A fan of Tom and Jerry cartoons, Shraddha loved drawing.

Often she would demand tea to stay awake. What if something happened while she was sleeping? With 18 painful spots on her spine, she did not really need much help to remain awake.

One day she requested the doctor for the stethoscope. She was thrilled when she had the chance to play with it. She listened to her father's heartbeats.

She knew enough of doctors and their specialisations to demand none less than an ophthalmologist, when the growing cancer began pushing her eye out.

Once her parents told the doctor she was not sleeping. Just on an impulse, the doctor asked her, "Shraddha, would you like to keep this stethoscope for a while?" The girl's eyes lit up. After a few moments of playing doctor, she was fast asleep, clutching the stethoscope.

Was she doing the rounds of the wards in her dreams?

6

Alliance for Global Education organised a meeting of prominent NGOs at Cipla Centre on April 23. The objective was to exchange notes on objectives and activities and to explore ways of contributing to one another's work. The 16 participants included representatives from Alliance for Global Education, Tarachand Hospital, Family Planning Association of India, Annapurna, Koshish and Parvati Swayamrojgaar.

She was a survivor of breast cancer, but never let the disease or its treatment interfere with her work as a volunteer. A talented singer, she took a keen interest in the regular cultural programmes at Cipla Centre. All of us at the Centre will miss her smile and her purposeful strides, as she went about her tasks. Wherever you are, keep singing, Prabha tai!

Prabha Joshi1944–2012

Art by Shraddha

7

MRI of a group of young men subjected to Blood test to monitor cancerpainful levels of heat revealed that those

British researchers have developed a simple engaged in complex memory tasks felt 19 blood test, which can monitor the progress of percent less pain compared to those handling tumors without the need for surgery or scans. simpler tasks. The study demonstrated that the Expected to become available for general use effect was not just psychological but involved in another five years, the test uses sequencing an active neuronal mechanism that interfered to look for tiny pieces of DNA that tumors with pain signals ascending from the spinal shed in blood. Current screening methods do cord to higher-order brain regions.not detect these particles. During the study of Peptide to break shields of cancer

Current Biology 38 patients with breast and ovarian cancer, the Scientists at the Dana-Farber Cancer Institute, researchers used blood sample from a 56-year

Retrovirus to kill cancerUSA, have developed an anti-cancer peptide, old woman to establish, in retrospect, that the called a "stapled BIM BH3 peptide" that first treatment she was given had not worked. Tests on a small group of patients have shown overcomes the stubborn resistance to

that retroviruses can be used to kill cancer Science Translational Medicine chemotherapy and radiation exhibited by cells and also to trigger an immune response

some recurring blood cancers. These cancer that helps eliminate residual cancer cells. The Drug that converts cancer stem cells cells use strong protein deflector shields to retrovirus is clever enough to piggyback on

thwart chemotherapy agents. The new peptide Researchers at McMaster's Stem Cell and blood cells, avoid the body's immune system

works by disabling these defenses.Cancer Research Institute, Canada have and home in on cancer cells. Thus, it is

developed a drug that converts cancer stem Journal of Clinical Investigation possible to deliver the virus intravenously cells into non-cancer cells. This is among the

through a simple injection. Researchers from More to diversion than mind13 drugs identified by the team for similar

the University of Leeds and the Institute of treatment of various cancers. Cancer stem

Cancer Research, London found evidence of A diversion not only takes the focus off pain cells were first identified in leukemia more

viral factories within tumors and recovered but also dampens the body's early than a decade ago. Subsequently, they have

replicating virus from the tumor (but not physiological response to pain by way of also been identified in ovarian, prostate, lung,

normal liver).endogenous opioids, according to a study brain, breast and gastrointestinal cancer.

conducted by University Medical Center Science Translational MedicineCell Humburg-Eppendorf, Germany. Functional

i p l a C e n t r e c o n d u c t e d t h e CCertificate Course in

Essentials of Palliative Care of the Indian Association of Palliative Care (IAPC) from June 21 to 23. In all, 27 doctors and nurses from Hyderabad, Bengaluru, Jaipur and Pune attended the course.

Dr Nagesh Simha spoke to p a r t i c i p a n t s a b o u t communication skills, and ethics and spiritual issues in palliative care. Dr Mary Ann M u c k a d e n s p o k e o n gastrointestinal symptoms, emergencies in palliative care and paediatric palliative care. Dr Priyadarshini Kulkarni dwelt on pain management (including use of opioids), end-of-life care and wound management. Dr Mugdha Angal provided practical demonstrations in physiotherapy. Madhura Bhatwadekar spoke about issues related to families.

Dr Mary Ann Muckaden informed the participants that Tata Memorial Centre has

now started an MD course in palliative care, for the first time in India.

IAPC started the Certificate Course in Essentials of Palliative Care in 2007. So far, seven courses have been completed all over the country. The objective behind the course is to spread the message of palliative care among healthcare professionals and to encourage them to delve deeper into this important branch of medicine.

IAPC course on essentials of palliative care

he trainers were all steeped in palliative care in cancer. Most of the Tparticipants were caregivers for a

family member affected by Parkinson's disease. The second instalment of the caring for caregivers series began as an experiment and ended as a "most helpful half-day; very informative and encouraging," as a participant put it.

Dr Priyadarshini Kulkarni explained at the outset that the objective of the series was to encourage and empower individuals involved in caring for a family member with a chronic illness or disability. The workshops would also help prepare potential caregivers.

Parkinson's disease is a d e g e n e r a t i v e disorder of the central ne r vous s ys t em. Early symptoms are movement-re lated like shaking, rigidity, s l o w n e s s a n d difficulty with walking and gait. Later, there may be behavioural, sensory, sleep and emotional problems. Most cases occur after the age of 50.

Dr Pradeep Kulkarni provided basic medical information about the disease. He pointed out that the caregiver had a very important role in conveying symptoms and progress of the patient to the doctor. He added that when travelling with a patient, it was important to

plan ahead and arrange for facilities to rest and to obtain medicines.

Take help and an occasional break

Though giving care to a patient can be very stressful, Dr Suchita Raj said that getting information about the disease and its treatment would help reduce anxiety. She urged caregivers to seek and accept help and to share their feelings. "Everyone has limitations; recognise yours and those of others," she said. "It is important to rationalise expectations and to take a break, once in a while."

Dealing with the important aspect of communications, Madhura Bhatwadekar stressed the importance of treating the patient as an adult. "Communicate when the patient is most attentive, speak clearly and slowly with gestures," she advised. "Stay calm if the patient is agitated. Give the patient enough time and space."

Dr Mugdha Angal demonstrated exercises to help patients maintain their muscles and mobility. She underlined the importance of regular physical and mental exercises to improve the patient's quality of life.

Caring for caregivers series: Parkinson's disease

E x p o s u r e t o s u c h

sessions is very helpful

and needed as caregivers

will be more prepared to face

the situations when the

disease progresses.

All lectures are helpful not

on l y f o r Pa rk inson ' s

patients but for all of us.

Such workshops should be

he ld pe r i od i ca l l y f o r

caregivers as well as for

patients.

We should have more

sessions on specific topics

like diet and counselling.

I got very nice guidance,

regarding helping my

husband as well as myself.

I w a s t r y i n g m a n y

experimental things on my

h u s b a n d w h o i s a

Parkinson's patient. I am

thankful to the Centre for

showing me that I was on

the right path.

M M Bhave

Jyotsna Pujari

Shekhar Bharve

C B Lamkane

Vijaylaxmi Revenkar

Awareness session for policemen, families

olicemen and members of their families watch a skit by volunteers of Cipla Centre during an awareness programme on Ppalliative care at the police quarters at Wakad, Pune on April 28

SMILE IT AWAYI am not smoking doctor. I am just burning

it up before it can cause any more cancer