Published on: February 29, 2016

Dear Friends,

Ketamine availability threatened. The pain burden can be horrendous.

Can you imagine being tied to an operation theatre when someone cuts into you without an anesthetic?

This is the prospect that threatens millions in the developing world as strict international control on Ketamine is contemplated.

While primarily an anesthetic, Ketamine is also used in specific chronic pain situations. Unfortunately diversion for recreational purposes is a possibility; but national control systems can easily solve the problem. But experts’ opinions are ignored and officials give out verbal knee-jerk reactions. Please see: http://www.health-e.org.za/2016/02/07/elite-african-group-in-vienna-undermines-au-drug-policy/

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Kerala state palliative care policy in action at Pathanamthitta

Dr M. R. Rajagopal writes from Pathanamthitta:

It was invigorating to be part of a palliative care meet of doctors in government service at Pathanamthitta district in Kerala. This was the first district to spread palliative care to every single panchayat in it.

It was reassuring that several doctors in the district have had palliative care training and what is more, so many others are interested.

And it was so good to hear that the palliative care system was instrumental in getting the Government’s pension system to reach more than 1200 of the needy.

District panchayat president Ms Annapoorna Devi, advocate Satheesh Chathankari, DMO Dr Gracy, Dy DMO Dr Anitha, DPM Dr Saiju, district coordinator Mr Shan Ramesh Gopan, we congratulate you on all your achievements.

True; there are problems; there would be. They are there to be overcome, are they not? Best wishes!

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The Rights of the Dying Child – Trieste Charter

Those of us who have raised a child would know the parents’ agony when their child goes through some pain or illness. What would it be like for children and their families when the child has an incurable illness and is dying.

Please read the Trieste Charter on the Rights of the Dying Child promoted by the Maruzza Foundation in Rome. Pallium India is proud to be a signatory to it.

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This is ugly, inhuman; can we not stop it?

“Like a midwife slapping life into a newborn baby, doctors now try to punch death out of a dying patient”, says Dr Jessica Zitter in her article “A code of death for dying patients” in the New York Times.

As a resuscitation enthusiast myself, I am sure of its great value – particularly in young people and in salvageable situations. But the present trend of “code blu”ing every dying elderly person makes me sad. We have allowed science to run away with itself. As Dr Zitter says, just as there is a “code blue” system, there should be a code of death – one with some respect and compassion to the person and family.

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College students on centre stage at palliative care meet

27th and 28th of February 2016 saw the annual state palliative care volunteers meet at Koottanad in central Kerala. Needless to say, the huge hall was full and overflowing. The energy and enthusiasm are growing, obviously.

Four college students – Sreena (Thrissur), Anas (Malappuram), Fairoos (Calicut) and Nijo P. S. (Kannur) – took the centre stage in one of early sessions on day 1. They described what they did and what they got out of it.

Saif Mohammad, the moderator, quoted a girl who was challenged by a visitor with a question, “What do you get out of it?” The girl replied, “I found myself.” Saif Mohammad also pointed out the need for the new faces to appear at these meets, rather than the same old faces year after year. He also called upon all senior palliative care leaders to develop a second line of youngsters.

Congratulations to the IAPC officer bearers, Mr M. Ramakrishnan, the President, Mr P. Narayanan, General Secretary, and Mr P. Madhusoodanan, Treasurer, for the excellent organization and for the activities through the year.

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A new step in Aizawl, Mizoram

Palliative care in India has grown slowly, but it left behind one area of next-to-no development – that is in HIV/AIDS management. Even the National Program for Palliative Care (NPPC) has not been able to touch this field, though technically included in the program. Some years back, we had collaborated with Samraksha in Karnataka, to establish palliative care in Asha Jyoti in Koppal district, but it folded up when NACO withdrew aid to all care centres.

So we are very happy with the new development in Aizawl, Mizoram. Pallium India collaborates with Synod Hospital to develop a new palliative care centre. It is particularly attractive to us because the service will be extended also to the General Hospital under the same campus, so that all people whether or not having HIV/AIDS will have access to care. We are pleased!

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The #LastWords ever spoken

“Please say Bye to my Mommy.”
“Tell my daughter I approve of her choice.”
“Has my son come?”
“Sorry.”

These are some of the last words that were spoken by people as they lay dying. Most of these were meant for family members, but they were not around at the time. The words were heard by the nurses who took care of them in their last stages.

The nurses to whom these words were uttered share their experiences in a film unveiled at the Indian Association of Palliative Care’s annual conference (IAPCON). This initiative, developed by the Indian Association of Palliative Care (IAPC), is themed #LastWords and features real nurses recounting the last words said to them at hospitals. The campaign seeks to raise awareness on palliative care.

Watch the video here: http://www.campaignindia.in/Video/400477,iapc-puts-last-moments-of-life-in-the-spotlight-with-lastwords-told-to-nurses.aspx

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Delhi walks for life with CanSupport

On Sunday, January 31, 2016, thousands from Delhi-NCR came together at Jawaharlal Nehru Stadium for CanSupport’s 9th Annual Walk For Life: Stride Against Cancer. The Walk was flagged off by Smt. Sangeeta Jaitley, while she and CanSupport Founder-President Smt. Harmala Gupta led the Lap of Honour for Survivors.

Held every year on the Sunday either prior to or after World Cancer Day (February 4), thousands of individuals, families, students and office-goers assemble and walk in solidarity of those touched by cancer at Walk For Life. Amongst the many walkers, runners, cyclists and skaters were also survivors and fighters – easily distinguishable by their proud and courageous donning of yellow t-shirts.

Smt. Sangeeta Jaitley, wife of Hon’ble Union Finance Minister Arun Jaitley; Sh. Manish Sisodia, Deputy Chief Minister of Delhi; Smt. Priya Dutt, political activist and daughter of late actors Nargis and Sunil Dutt; and Dr. A. P. Maheshwari, Additional Director-General, Border Security Force; were the guests of honour at Walk For Life this year.

Walk For Life 2016 was supported by Boeing International Corporation India Pvt. Ltd. as Principal Sponsor, while Max India Foundation was the Co-Sponsor. A total of 25 schools, 27 colleges and 30 corporate institutions walked besides other individuals and families.

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We are with you, say students of Mar Baselios College, with a splash of color.

“Quality of life is what a person says it is.” Seeking inspiration from this, the students of Mar Baselios College of Engineering (MBCET) came forward to extend their support to Pallium India’s “Paint a Wall, Spread a Smile” program, as a part of their college festival titled “Crossroads 2016”. On February 13, 2016, around 100 students worked alongside Pallium India’s team members to paint a wall each of the houses of 10 patients who receive palliative care.

One of the houses at Manacaud was visited by Hon. Deputy Mayor Adv Rakhi Ravikumar. Adv Rakhi appreciated the work of the students and suggested that more people should take up the initiative. The principal of the college Dr. T. M. George, vice principal Prof V. Rao, Pallium India CEO Mr. Manoj G.S. and Crossroads staff Coordinator Mr. Rajesh were also present at the occasion

The ‘Paint a Room’ program had been inaugurated earlier, on January 15, Kerala Palliative Care Day, by Adv. Rakhi Ravikumar at Manaveeyam Veedhi.

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Bharatiya Vidya Bhavan supports Pallium India

Students of Bharatiya Vidya Bhavan school collected study materials for Pallium India’s educational support program and also conducted a food festival to raise funds.

These were handed over to Mr Deepak Sadanandan of Pallium India. Our sincere gratitude to the students and staff of Bharatiya Vidya Bhavan.

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Indigo Airlines ground staff fly sky-high – in compassion.

A dozen members of Indigo Airlines ground staff put in a part of their earnings to raise a substantial donation to Pallium India. Their bright young faces were full of eagerness as they thanked our team for giving them an “opportunity to serve those in need”.

Indeed young friends, we don’t have words to express our gratitude – and not just for the money. You make us feel strong!

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We value your support!

Members of Sirajul Huda Yuvajana Vedi, Pothencode, Trivandrum, conducted a fundraising event and donated the amount to Pallium India’s CEO, Mr G.S.Manoj.

 

Students of Holy Angels’ Convent school, Trivandrum, and their Principal Sr Phyllis handing over the money they collected for patient care, to Pallium India’s trustee Dr C. Mohanan.

 

Pallium India Trustee, Dr. C. Mohanan, receiving a donation from Trivandrum Mayor Shri V.K. Prashant. The amount was raised by the children of Shanti Nagar, Sreekaryam, through their Christmas Carol program. 

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Temple administration demonstrates social consciousness

Festivals in Hindu temples celebrate the greatness of the Almighty. What better way to celebrate it than to provide support for the suffering?

Uzhamalakkal Sri Lekshmimangalam Devi temple thiruvathira maholsavam gave its Lekshmimangalam award for Excellence to Pallium India.

The prize money will go a long way in making many peoples’ lives better. Truly, it will be God’s work made visible!

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Love, served on banana leaves

Ms Grace Taylor, a final year medical student from Harvard, Boston, USA, has been volunteering in Pallium India for the last six months. What a lot she has done!

From the time she eased so gently into the team, to working with us caring for patients and families, copy editing most of a book, developing guidelines and protocols, … and more!

Grace completed her six months on 20th of February, 2016, with a farewell feast that she organized for the team, served in the traditional Kerala fashion, on banana leaves.

Dear Grace, the whole team will cherish your time with us. Thank you for everything, and come back soon!

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Visiting Palliative Care Consultants

Dr Ann Broderick, a palliative medicine consultant from Iowa, USA, spent more than three months with us, initially mentoring a group of students who came to us for a three weeks cultural immersion course and then staying on for two months to help and mentor our own team. We all learned such a lot from her – not only the art and science of palliative medicine, but also a great lesson on dedication and commitment.

Ann also envisioned, developed and co-ordinated an activity to get more consultants from other countries to work with us. We get their expertise – but what do they get in return? Perhaps, just the satisfaction that what they put in makes such enormous difference to other people’s lives.

Before Ann leaves in mid March, we would have with us Dr John Ely, a palliative medicine consultant from the University of Minnesota, who has previous experience in international palliative care from Eastern Europe. Dr John is vounteering his time till May. He will help us with the six weeks course that starts on March 7th, and also with patient care. We welcome Dr John.

Thank you very much, Dr Ann and Dr John.

Read: Seeking Experienced International Physicians

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Refresher Course on Palliative Care at Jaipur

“I realized the importance of psychosocial care when you take care of the whole person.”
“I feel more confident in taking care of pain in children.”
“The leadership practices was a good learning for me.”
“I learnt a lot about grief and bereavement.”

These were some of the comments from participants who attended a refresher course on palliative care organized by the Department of Palliative Care of Bhagwan Mahaveer Cancer Hospital & Research Centre, Jaipur, in collaboration with Pallium India and Cairdeas, Scotland on 16th, 17th & 18th Feb 2016. The three-day course was inaugurated by Dr. Mhoira Leng, Major General Dr. S.C. Pareek, Medical Director, BMCHRC, Mrs Anila Kothari and Mrs Florence Sserwadda. The international guest faculty comprised of Dr. Mhoira Leng, Palliative Care Physician of Cairdeas, Scotland and Florence, Palliative care nurse from Makarere University, Uganda. Dr. Anjum Khan Joad, Dr.Avnish Bharadwaj & Dr.S.G Kabra were the national faculty.

28 participants attended the three day course including doctors, nurse, psychologists and social workers representing Avedna Ashram hospice, Cansupport Delhi, Fortis hospital, ESIS hospital, SMS hospital, Asha Kiran and BMCHRC.

At the end of the course, the participants were asked, “From the course, is there anything that you could implement this week?” The answers included, “I will listen more”, “encourage the heart “, “increase my team spirit and teamwork”, “communicate with families better” and “talk to children”.

The refresher course was designed according to the current necessities of the palliative care, with focus on sharing of experiences and knowledge. Dr. Mhoira Leng & Florence vividly shared their experiences through role playing, modeling, one-on-one discussion, group discussion and Question & Answer session among the delegates. The topics included advanced communication, children’s palliative care, Medical-ethical and legal aspects of end of life care, conflict resolution, leadership, respiratory symptoms, anorexia-cachexia-fatigue, grief and bereavement. The need for integrating psychological intervention in comprehensive palliative care was emphasized.

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Lymphedema Awareness program on World Cancer Day

On February 4, World Cancer Day, Pallium India and Rajeshwary Foundation organized an awareness program on Lymphedema. Pallium India’s weekly Lymphedema clinic was also inaugurated at the event. A report in the Deccan Chronicle:

 

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Improving Palliative Care awareness

As a part of our efforts to raise awareness about palliative care, we conduct programs and activities in schools, organizations, residential colonies and so on. If you are interested in conducting an awareness program in your area, please contact us.

 

A palliative care awareness program was conducted for students and teachers at Govt High School Chala, Trivandrum, by Pallium India on 18th January. 

 

Student police cadets from Kanjarakulam St.Helens School visited Pallium India on 6th January

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Pallium India wins Palliative Care Award for the SAARC Countries

Pallium India has been adjudged the winner of the Palliative Care Award for the SAARC Countries 2015-16 instituted by Cancer Aid Society.

 

Dr M. R. Rajagopal, Chairman of Pallium India, received the award and the prize money of ₹100,000 from Dr Piyush Gupta during the inaugural function of the International Conference of Indian Association of Palliative Care (IAPCON) on 12th February, 2016 at Pune.

Cancer Aid Society is an India-based non-governmental organization working on a variety of areas including palliative care, advocacy, tobacco control, and disease prevention, and holds a special consultative status with the United Nations ECOSOC.

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A goodbye, 30 years later.

For anyone who grew up with a father and a mother, it would be difficult to understand what it is like to lose a parent during childhood.

Read the heart-rending story of a woman’s journey to another country thirty years after her father’s death.

It is so important to make peace with oneself by saying the final goodbyes. Unfortunately, many of us deprive our loved ones of this chance by hiding the truth about a disease till it is too late.

You might also like to read Nazeem Beegum’s book “My mother did not go bald” which she wrote after losing her mother to cancer. The book was published by DC Books though not available in the market right now. She is trying for a relaunch to make it available to all.

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Free e-learning course on Palliative Care

ecancer has launched a new 20 module e-learning course on palliative care for healthcare professionals in India. The course includes symptom management, paediatric care, malignant and non-malignant disease, pain management, psychosocial care and communication and counselling skills. The modules have been developed in association with the Bangalore Hospice Trust – Karunashraya and Cardiff Palliative Care Education and are free to access.

Click here to register for the course: Palliative care e-learning course for healthcare professionals in India

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Scholarship Program for Certificate Courses

Indo American Cancer Association (IACA), in association with TIPS, is offering a scholarship to undergo a 6 weeks residential/non-residential palliative care training course at selected centers in India:

• MNJ Institute of Oncology, Hyderabad (MNJ), Telengana – March 7
• Trivandrum Institute of Palliative Sciences (TIPS), Trivandrum, Kerala – June 5
• TATA Medical Centre (TMC), Mumbai, Maharashtra – July
• Gujarat Cancer and Research Institute (GCRI), Ahmedabad, Gujarat – March 28
• Bhagvan Mahaveer Cancer Hospital and Research Centre (BMCHRC), Jaipur, Rajasthan – April 4

Type of Scholarship

• Depends on performance of the candidate in the telephonic interview conducted by IACA interview panel.
• Full support to the outstation candidates includes – travel, accommodation, canteen, local travel, fees with cap on all items.
• Partial support is given to the local candidates.

Eligibility

• Doctor – MBBS
• Nurse – BSc/GNM

Please click on the following link for more info: http://www.iacaweb.org/palliative-care-course-web-portal/
Contact: abulaizecb@palliumindia.live-website.com

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Donate Toys for children!

We are happily accepting toy donations for our weekly children’s palliative care clinic. Certain specifications need to be considered before sending the toys across, due to the nature of the children’s illnesses.

Kindly avoid toys with small breakable parts, anything with batteries, toys with sharp edges, regular sized Lego pieces, jigsaw puzzles with small pieces, games involving liquids (like the ones that shoot rings onto sticks at the press of a button), stuffed toys that have fine hair and fluff, etc.

If you are interested in sending something across, do call us (+91-9746745497) or write to us:info@palliumindia.live-website.com. Thank you very much!

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Palliative Care Information 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@palliumindia.live-website.com
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum

For more details, please visit: https://palliumindia.org/info-centre/

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News from around the world

• Only 36% cancer patients in India receive treatment
• Global NGO to check palliative care capacity
• Improving end of life care for people with dementia
• Psychoactive properties of opioids and the experience of pain
• Palliative care should begin at the time of diagnosis, say experts
• Doctor Assisted Dying Or Doctor Assisted Prolonging?
• With Dr Megan Doherty, on her work in Bangladesh and the International Paediatric Palliative Care Discussion Forum
• Being a real doctor
• “Palliative care is the beginning of a different way of living your life”
• Who Wants to Tell Someone Their Loved One Is Dying?
• When the Hospital Is Not a Haven
• What would any of us want, as we lay dying?
• End-Of-Life Care For Cancer Patients Can Help Bring More Value To Life
• Exercise shown to improve physical, emotional and psychological wellbeing of people with terminal cancer
• ICPCN responds to the Zika virus and the role of children’s palliative care
• Valuing palliative care in global health

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Upcoming Courses

Pallium India, in collaboration with other organizations, conducts courses on palliative care for health care professionals and volunteers in different parts of India:

• GCRI, Ahmedabad, Gujarat. Contact: palliumindia.gcri@gmail.com – 1 Mar 2016
• TIPS, Trivandrum, Kerala. Contact: info@palliumindia.live-website.com – 7 Mar, 2016
• MNJIO&RCC, Hyderabad, Telengana. Contact: mnj.palliative@gmail.com – 7 Mar 2016
• BMCHRC, Jaipur, Rajasthan. Contact: palliumjaipur@gmail.com – 2 May 2016

For more details on the courses we offer, please visit: https://palliumindia.org/courses/

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PARTING SHOT

No Admission for Cancer Patients!

Dr Aditi Chaturvedi of Ganga Prem Hospice writes:

Being a person with cancer in India often means that local doctors and hospitals will refuse to give even basic help when symptomatic relief may be desperately needed.

All too often, a person with cancer will be turned away and told to go to a ‘cancer hospital’. Hospitals with facilities for cancer patients are few and far between in most states and help may be too far away for the patient to reach the hospital alive.

A typical example was Mr K who suffered from cancer of the jaw. He reported to a local hospital suffering from sudden abdominal distension and diahorrea. The doctor there said: “But you are a cancer patient. This is a general hospital, you need to go to a cancer hospital,” and turned Mr K away without any basic investigation or symptom relief.

The only cancer hospital in the state was 100 kilometres from his home town and although the family immediately set off with him, Mr K died on the journey before reaching the hospital.

Another example is Mrs B, who had an advanced head and neck tumour. Mrs B is diabetic and suffers from breathlessness. She also has difficulty in swallowing.

Being a cancer patient, local doctors and hospitals turn her away and refuse to attempt any basic symptomatic relief or advice on how to manage her symptoms at home.

The questions that need to be asked here are: ‘Do symptoms such as pain, breathlessness and vomiting need a specialist cancer hospital?’ ‘Are we as doctors justified in referring patients to cancer hospitals without at least first offering preliminary symptomatic care?’ ‘Would we expect ourselves to be treated in this way if we were suffering with advanced cancer?’

What is the root of the problem? Is it that symptomatic control was not emphasised sufficiently in our undergraduate medical schools? I do not recall any classes on palliative care or even pain control as a medical student.

Is it that as doctors in India we are conditioned to ignore patients’ feelings and immediate needs and focus on cure alone? Or is it that cancer cure from surgery, radiotherapy and chemotherapy has become so paramount in our minds that we forget that we are dealing with human life which feels and needs immediate relief from pain and symptoms?

Does our undergraduate medical curriculum do justice when it comes to dealing with patients suffering from life limiting illnesses?

A reform in medical curriculum is certainly needed urgently. We need to be aware of our patients as human beings like ourselves, rather than just focusing on the existence of the disease.

We need to have a good understanding of palliative care from the beginning of our training. We must know that palliative care and pain control is a human right and act accordingly, ensuring we are skilled to at least provide basic control of distressing symptoms.

If we are fortunate enough to work in a facility which has access to a palliative care team we should know when and how to refer to the team.

Are we afraid to admit people with cancer to our hospitals because they might die in the hospital and therefore increase our hospital death rate? Is it that we have been taught not to accept death, that death indicates a failure, so we should avoid it, sending the patient home or elsewhere?

Surely we as doctors need to teach ourselves and those we are training to accept death as a natural process and not as a failure. Times are changing in the medical profession but sadly far too slowly.

This article originally appeared in ehospice and is republished here with permission.