May 2019 Newsletter

2019 May 2

Global overview of access to palliative care in Non-Communicable Diseases (NCDs):

 

See the results of a NCD country capacity survey from World Health Organization as an updated global snapshot.
https://www.who.int/ncds/management/palliative-care/PC-infographic-rev-2018-final-for-web.pdf?ua=1

Thank you Dr Cherian Varghese (Coordinator, Management of NCDs, WHO, Geneva) for making this informative report available.

 

Congratulations Dr Thinh, Dr The, Professor Eric Krakauer and all colleagues:

Mahatma Gandhi said, “A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history.”

And here is some living proof.

 

Please see this success story from Vietnam:

https://ehospice.com/international_posts/vietnamese-health-sciences-university-trains-students-in-palliative-care/

Thank you e-hospice, for bringing this to our attention.

Thank you Dr Sarah Easaw and thank you all at FOMAA.

Sometimes, Providence brings to us some exceptional human beings. One such gift to Pallium India is Dr Sarah Easaw, an oncologist in New Jersey, USA.

With the help of the women’s wing of the organisation that she headed at that time, Federation of Malayali Associations of America (FOMAA), she and her colleagues Rekha Nair (WF Secretary at that time), Kusumam Titus (Advisory Board Chair) and Benny Vachachira (FOMAA President at that time), funded us to create a special support system for one group of vulnerable people – women. As patients or caregivers, the challenges women have to go through in our society are formidable.

Please read what FOMAA has to say about Dr Sarah Easaw: https://www.facebook.com/story.php?story_fbid=400269860801798&id=233290290833090

And please watch this six minute video. It will give some examples of the value of the work that FOMAA made happen.

 

While you were thinking of whom to vote for, Swarnalatha had to think HOW to vote.

Swarnalatha is a young activist in Coimbatore in Tamilnadu who needs a wheelchair for mobility. She writes on Facebook: “I’m not the complaining type, but Election Commission of India (ECI) promised 100% accessibility at all polling booths. They promised wheelchairs and volunteers to assist people with disabilities and senior citizens. I found none. ECI disappointed me. These ramps are a joke! I had to seek help from police on duty to lift my wheelchair twice, once to get into the compound and second to get into the building itself and return. Wonder if I could once in my lifetime vote with dignity.” Please read: https://www.facebook.com/swarna.latha.31586/posts/2421934964507809

We had blogged about Swarnalatha earlier; please see https://palliumindia.org/2018/09/women-of-substance/ and https://palliumindia.org/2018/09/women-of-substance-calendar-launch/.

And see what Pallium India’s Ashla Rani wrote in the Times of India in 2017. https://timesofindia.indiatimes.com/blogs/toi-edit-page/when-compassion-isnt-enough/. She writes about the difficulties of entering a restaurant with friends, “…..kind friends and waiters in the restaurant would offer to lift my chair and take me to the restaurant. Imagine yourself in my position. Would you like to feel that you are burdening four or more people? Perhaps one of the waiters has a bad back and you are contributing to his eventual incapacitation? How would you like to be the object of sympathy of a dozen eyes, curiously concentrating on this helpless body being carried up?”

The Rights of Persons with Disabilities Act, 2016, recently passed in Indian Parliament to give effect to a related UN Convention of 2006, promises among other things equality of opportunity and accessibility. This is the follow up action to a UN convention India had ratified as early as in October, 2007!

Laws alone will not change anything. Not if the society does not wake up and realize that the differently abled are part of this world and have a right to this world. As Ashla says, “My request is to you – each one of you.…. give a minute to put yourself in the place of someone who has a disability or paralysis. Allow us to be human beings. Break the barriers that prevent us from reaching your world”.

Is home not the best place to die in?

Home is where one feels connected. And one would like to have family around, say one’s farewells and go in peace. Yes; but when one feels that way, he or she has not experienced what it is like to die at home.

So could death at home be a romantic dream rather than practical reality?

Researchers from University of Missouri-Columbia challenge the oft-held view about “death at home” in the article, “The myth of ‘no place like home’ when it comes to end of life” published on 03 April 2019. The study finds that “home deaths can be physically and emotionally challenging, especially for caregivers”. We need to think, could this challenge be even greater in our country where palliative care services are able to give only even less support at home?

Please read the abstract of the article: The Motivations and Consequences of Dying at Home: Family Caregiver Perspectives

Thank you Barry Ashpole and Media Watch for bringing this to our attention.

Compassionate obstetricians and gynaecologists of Navi Mumbai

What is it about the air in Navi Mumbai that gives such great energy to the obstetricians and gynaecologists there? Whatever it is, Pallium India felt their drive and their compassion at a day of deliberations on palliative care that they undertook on 14 April 2019. The Chairman of Pallium India delivered the Daftary oration which was created by the legend, Dr Shirish Daftary.

Dr Daftary spoke about the need for pain relief in labour and for Indianising the process. The western model of pain relief in labour, which is manpower-intensive, will not do for our country, where an anesthetist’s time is hard to come by even for life-saving surgical procedures. Dr Shirish Daftary has several publications on this subject.

We look forward to working with this dynamic group, now headed by Dr Mini Namboothiri and Dr K S Bindu.

Monsters in the dark

Remember Siddhartha Mukherjee’s “Emperor of all Maladies“? Published in 2010, this biography of cancer had won the 2011 Pulitzer prize for non-fiction.

An amazing Indian team has created a dramatised version of this epic book. On 14th of April 2019, the Indian Cancer Society organised a performance of the play at the Kamani Auditorium in New Delhi.

For those who do not want to read the whole book and are more inclined to watch a play, we would strongly recommend this. In an hour and a half it gives the history of cancer and its treatment without boring you for a second.

As we left the auditorium, several images from the story continued to play in our minds. Like the story of the woman, centuries back, who amputated her own breast. The struggles of researchers having to deal with ethics committees and with the conflict between greater common good and individual patients’ welfare. And the greed of the tobacco industry, which despite all evidence of the destruction that tobacco causes, continues to kill and thrive.

Dilasa (Solace) in Goa

Good things are happening in Goa. Pallium India is proud to associate with Dilasa, run by a lively team of compassionate doctors from Indian Medical Association (IMA), Ponda, and other volunteers, headed by Dr Vallabh Dhaimodker.

What enthusiasm! On 12 April, 2019, Pallium India took part in the inauguration of an outpatient clinic based at Dilasa. We also had several discussions, one with the management team and another with a larger audience including many volunteers.

 

Dilasa decided not to restrict themselves to cancer or to end of life situations, and to look at all serious health-related suffering.

Kudos to Dilasa and to IMA, Ponda.

Upcoming: Online Foundation Course in Palliative Medicine (for doctors)

TIPS (Trivandrum Institute of Palliative Sciences) collaborates with ECHO International (Extension for Community Healthcare Outcomes) to provide palliative care education and expertise using an online platform. As part of TIPS-ECHO, we conduct sessions to enable medical professionals to inculcate the principles of palliative care in their treatment.

Project ECHO® is an online lifelong learning and guided practice model that revolutionizes medical education and exponentially increases workforce capacity to provide best practice specialty care and reduce health disparities through its hub-and-spoke knowledge-sharing networks.

Click here to read more about the TIPS-ECHO Program.

The Objective of the Online Foundation Course in Palliative Medicine is to train healthcare professionals in pain management and palliative care.

To ensure adequate interaction during sessions, we will have to limit the number of participants at each course on a first-come, first-served basis. So register quickly!

Eligibility

M.B.B.S or B.D.S with permanent registration with medical council.

Class Details

Classes Scheduled: 18 Sessions
Start Date: 01 May 2019
End Date: 28 Aug 2019
Day of the week: Wednesdays
Class Timing: 3:00 PM – 4:30 PM

Attendance

Participants need to attend all sessions. If one is unable to attend a session, due to unexpected emergency, they should watch the session videos provided and mail us back a summary of the class. Course certificate can be issued only to those who have attended minimum 80% of the sessions in person.

 

Features of Online Foundation Course in Palliative Medicine

  • Prescribed syllabus-oriented courses
  • 1 session per week
  • Pre-test and post-test for assessment
  • Case Presentation by a participant in each session
  • Regular assignments
  • Participants are provided with various learning materials for different topics
  • Several articles regarding subject shared
  • Certificate issuance at the end.

How to apply

Download the application form, fill it up and send it to tipsecho@palliumindia.org

How to join the session

ECHO is conducted through ZOOM application which can be downloaded(free download) from Google play store for mobile phones and direct download from internet for Windows.

Download from: https://zoom.us/download

Click here for instructions on how to download and join a meeting

 

Contact

For more information on this course or for any assistance, please call us at +91-6282902450 or write to us: tipsecho@palliumindia.org

Clinical Director: Dr M. R. Rajagopal

Project Facilitator: Dr Sunilkumar M. M.

Project Coordinator: Ms Rajalekshmi Balu

Videos of Previous Sessions

Click here to view the videos of previous sessions

Can the woman who feels no pain guide us to a safe pain-reliever?

Medical Science has struggled for centuries to relieve pain and suffering. The search usually ends with an opioid which, unfortunately, needs to be used carefully for its various side effects, including the possibility of addiction. A 71-year old woman in the UK, it now appears, may lead us to an answer.

This woman went to a hospital for a surgery that should ordinarily have been very painful. She required no pain medicines except for one dose of Paracetamol, which possibly she did not need. An astute doctor was curious. He went into her medical history: at the age of 65, she had undergone a hip surgery which again should have been painful, but wasn’t. This time, it led to research, which showed that she had not only no pain sensation; but also never experienced any anxiety about anything. She would know of a burn on her skin only when she smelled burning flesh! Her wounds heal fast. The geneticists’ search led to a pseudogene.

Now here is how we, non-geneticists, interpret this:

Pseudogenes are junk genes, so far thought to be of no use. Their presence caused the woman’s freedom from pain. We now understand that they are not really junk genes; they could potentially lead us to safe ways of relieving pain.

Interestingly, of her two children, the daughter feels pain normally, but her son has diminished pain sensation, though not complete loss of pain as in the mother.

This is different from the total absence of pain that some children may be born with. In such cases, children sustain injuries because of pain as a protectant, and die in childhood.

The article is available for free download at: https://bjanaesthesia.org/article/S0007-0912(19)30138-2/pdf

Can someone who understands genetics give us more information about this pseudogene and its potential impact, in layman’s language? We will be very grateful.

Nurses thirsty for knowledge on World Health Day

World Health Day, 7th April 2019, saw palliative care nurses from the four southern districts of Kerala getting together at Kollam for a day to absorb more knowledge about palliative care and nursing. Organising team at Kollam, thank you for giving this opportunity for a large number of representatives from Pallium India along with other nurses.

The nurses left with a resolution to plan for weekly educational programmes in each district. The importance of this cannot be underrated. The tiny state of Kerala has more than a 1000 palliative care nurses – more than 90% of them reaching patients and families in their homes. The more empowered they are, the better the quality of health care in the state; and the less the suffering in the community.

Donate to Pallium India

The money you give will pay for essential free medicines for the poor, for their travel to the clinic or for schooling of their children, or other forms of care.

Please give whatever you can. No amount is too small.

To donate, please visit:

http://palliumindia.org/donate/ (India)

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Write to us: info@palliumindia.org

Call us: +91-9746745497 (India) / +1-718-273-8597 (USA)

All donations to Pallium India are tax deductible.

Upcoming Events

Have Queries? Contact: info@palliumindia.org.

Find out more about our courses at: http://palliumindia.org/courses/

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image06Palliative Care Information Centre

Contact Pallium India’s Information Centre (9 am to 5 p.m., except on Sundays and National holidays) for information related to palliative care and about establishments where such facilities are available in India.

Telephone: +91-9746745497
or E-mail: info@palliumindia.org
Address: Pallium India Trust, VP 80/13, Golden Hills, Venkode P.O., Vattappara, Thiruvananthapuram 695028

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

PARTING SHOT

The goodness in every community

Dr Rukmani Lobo, a palliative care physician in Goa, told us this story from Nagpur during her work with the hospice Snehanchal:

Snehanchal has social workers posted to stay near the registration desk in a major government hospital. (This privilege of occupying some space in a corridor was obtained after some long struggles; but eventually the powers permitted it.). The social worker’s role was to find people who needed palliative care and to direct them to the hospice.

One day, a social worker found a man and his wife lying helpless in a miserable state outside the hospital. A chowkidar was asking them to move away; but the man obviously was unable to. He had a nasty cancer on his cheek on which maggots were crawling about and feeding themselves. The hospital had told him the usual, ‘There is nothing more we can do. Go home and come back after a week for review.’

If only they had told him not to come back, they would have somehow gone to their village. But here he was having to come back to hospital. Strange, isn’t it? He is rejected without his wound with maggots being treated; yet the doctor’s word seems to be law to them.

The social worker wanted to take him to the hospice. Initially the family was reluctant to go. There was clear lack of trust in humanity! But after some persuasion, and after clear promises that no payment will be required, they accepted the invitation, possibly because they had little choice. The man and his wife were taken to the hospice.

The loving care cleared the wounds of maggots. The man lived there for nearly a month and died.

But the story does not end there.

A month later, a group of villagers led by the man’s wife came to the hospice. They carried several heavy sacks with them. They would not say what they wanted; they wanted to see the founder-director, Mr Jimmy Rana. The staff explained that he had gone back home for the day. But the family was insistent, “Just call him and let us talk to him.”

They obliged. Mr Rana came on line. When he learnt that it was the dead man’s family, he agreed to drive back to the hospice.

The sacks that the villagers brought had several jars of eatables and a jar of money too. That was the ritual; all the villagers would chip in with money and food stuff with which the family would host a feast. The villagers would enjoy the feast and then the man’s soul would be set free.

But in this case, the villagers had got together and decided that the usual ritual just wouldn’t do. They decided that they would not have the feast. Everything collected including all the money was to be donated to the hospice. They could think of no better way of setting the man’s soul free.

***

When we talk about the community participation in Kerala, too often we get an immediate response, “All that may happen in Kerala. It wouldn’t happen in our place.”

We are sharing the above story for the attention of everyone who believes in that line. There are people like these villagers, in every place. Maybe the busy habits of city-dwelling may have changed some, but deep inside there would be a lot of people in any community who would be willing to help those around them. They just need a facilitator who shows them the way to putting their humanity to practical use.

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