February 2017 Newsletter

2017 January 31
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Dear Friends,

Palliative Care in India comes of age

We do declare; palliative care has come of age in India.

Are we rash in making such a statement, when palliative care is reaching only one percent of the needy? Well, we have evidence. This picture is one.

For the last quarter of a century, palliative care was the topic only in palliative care conferences. For the first time, another body has made it the theme of their conference – the theme of the National Bioethics Conference held at Pune from 13-15 January, 2017 organized by the Indian Journal of Medical Ethics, and the Forum for Medical Ethics Society was “Healing and dying with dignity: Ethical issues in palliative care, end-of-life care and euthanasia”.

There were 350 people in the audience, which included very famous personalities like Dr Binayak Sen, the winner of the Jonathan Mann award, Dr Soumya Swaminathan, the Director of Indian Council of Medical Research, to name but two.

20 different organizations co-hosted the conference, the notable among which were the Indian Society of Critical Care Medicine, Indian Academy of Neurology and Indian Association of Palliative Care.

Pallium India’s chairman, Dr M R Rajagopal, was felicitated at the opening ceremony. He also gave an inaugural address along with two dignitaries, Vidyatai Bal, the founder of Nari Samata Manch, and Syed Adibul Hasan Rizvi from Pakistan, winner of the 1998 Magsaysay award.

Pallium India also facilitated a workshop on the marginalised in palliative care and took part in two other workshops – one on strategies in palliative care and the other, a pre-conference workshop on 12th January. The poster presented by Dr Sreedevi Warrier, “She is all I have” about ethical dilemmas attracted attention and so did the presentation on “Consent, assent and confidentiality issues in studies on institutionalised adolescence” presented by Pallium India’s Project Officer, Sumitha T. S.

Though the confusion in the minds of many associating palliative care with only end of life care, still seemed rampant, the overarching message running through the conference was one of integration of palliative care into health care as a whole.

Pallium India team left the conference venue more than satisfied with high hopes for the future.

Thank you, everyone at IJME and FMES.

This ECHO will leave echos for a long time.

In what we see as a major step forward, Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) started its fortnightly ECHO program on 20th January, 2017.

Extension for Community Health Outcomes (ECHO) is the brainchild of Dr Sanjeev Arora of Albuquerque, USA. Its slogan is Move Knowledge; Not Patients. This first ECHO program undertaken by TIPS was aimed at clinicians who already have undergone palliative care education and are practising it.

Typically, any ECHO program has a “hub-and-spoke” design. In this case, the hub was TIPS and the spokes came from three countries: 18 centres from India, Bhutan and Bangladesh were connected virtually in real time to discuss patient concerns and evolve recommendations for best practices in care.

The fortnightly two-and-a-half hour educational program would have a short didactic session of 15 mins, followed by case-based presentations and learning. The technological support from the Delhi ECHO Project team right through the preparatory phase and the actual event was crucial in getting the venture off the floor so smoothly.

The feedback from the participants was encouraging.

“It was indeed a rewarding and educative experience,” said one participant. “Amazing to see people all over India and overseas well connected and interacting with each other. It is an eye opener to see how palliative care has spread.”

Another participant said, “It was a wonderful experience for me and I believe it is a breakthrough in online learning.”

Thank you, Dr Sanjeev Arora, and thank you Dr Sunil Anand in Delhi, for introducing ECHO to us, and welcoming us to your fold. We see this as a development with a huge long-term implication.

We were so proud and privileged to have Dr Klara Tisocki, our WHO CC’s responsible officer at WHO SEARO to inaugurate the event and to sit through it.

Speakers from India and Ukraine tell UN Commission about Palliative Care Medicines

Katherine Pettus, advocacy officer of International Association for Hospice and Palliative Care (IAHPC) writes from Vienna:

On 23rd January 2017, I was honoured to present two esteemed palliative care colleagues, Dr. M. R. Rajagopal, Chair of Pallium India, and Ms Kseniya Shapoval from the International Renaissance Foundation in Kiev, Ukraine, to the United Nations Commission on Narcotic Drugs in Vienna. They spoke to UN member states about the need to improve access to medicines for pain and palliative care in their respective countries.

Essential palliative care medicines such as morphine, which relieve a patient’s pain when rationally administered, are controlled under both national law and under the international drug control treaties. Restricting their access “except for medical and scientific purposes” takes a lot of resources. So-called developing countries are still in the process of learning to divert from police control and repression to evidence-based public healthcare.

Dr Rajagopal spoke by video link (click here to read a transcript of his speech) and Ms. Shapoval in person (click here to read her speech).

Dr Rajagopal spoke about how 99% of Indian people who need it have no access to palliative care, although a rupee’s worth of morphine could support a terminally ill young child and bring his family some peace. Ms. Shapoval said that she had been honored to be on the Ukraine delegation to CND last year, and to the UNGASS in April 2016. “Speaking as a member of the official delegation, I have to note that the involvement of public health specialists and NGO representatives in the work of the delegation and in parallel sessions within the special session, made it possible to implement a balanced approach to access to controlled medicines in Ukraine. In particular, to look at the problem not only in terms of the fight against drugs, but also in terms of human rights.”

In the case of controlled medicines, implementing Chapter Two of the Outcome Document means a government must commit funds to the education and training of healthcare workers, and re-drafting legislation to modernise and allow more rational prescribing practices. This aligns them with the evolving interpretations of international law that are pro-public health rather than pro-repression, which evidence shows has negative impacts on public health and human rights. As access to controlled medicines is unduly restricted for multiple reasons, in many countries, including India and Ukraine – violating human rights to health, and to be free from torture, cruel, and inhumane punishment – advocacy must be focused at the international, as well as national, levels.

The Commission on Narcotic Drugs, based in Vienna, Austria, is the UN agency that oversees how countries are implementing the three drug control treaties, which regulate medicines such as morphine and methadone for palliative care, along with cannabis and heroin. Last year CND approved a resolution, which was later approved by the UN General Assembly, called the UNGASS (UN General Assembly Special Session on the World Drug Problem) Outcome Document. It has an entire chapter devoted to improving access to controlled medicines, with six operational paragraphs and multiple practical recommendations. Governments now need to implement the recommendations and report back to the CND over the course of the next three years. They need the help of civil society organisations such as Pallium India to do this. Pallium India is involved in a network of global palliative care organisations that are also linked to the international drug law reform organisations that participate regularly at CND.

During multi-day meetings called “intersessionals,” the CND has been reviewing the implementation of each chapter, and has allocated four slots for civil society to address progresses and challenges in each chapter, alongside member states. This is an unprecedented opportunity for member states to learn from palliative care leaders about what is happening in the ground in their countries. As governments rely on civil society to provide them with information, advocacy organisations need to present experts in as many fora as possible.

Consideration of the other five thematic chapters in the plenary began with presentations from the relevant divisions in UNODC and the International Narcotics Control Board (INCB) followed by member state interventions, and civil society. Delegates responded positively to Dr. Raj and Kseniya’s presentations and will be able to access them on the UNODC website. Unfortunately, because the intersessional took place at the same time as the WHO Executive Board meeting, WHO staff could not be present for the meeting, but will give an update during a technical briefing in February.

We will have speakers from other countries at upcoming sessions of CND, and a large side event at the annual meeting in March. For more policy information, sign up for our free regular story on policy in the IAHPC Newsletter.

Balance is key to palliative care

“The layman doesn’t know that pain relief or other symptom control is possible, leave alone psycho-socio-spiritual support. And what is worse, the majority of medical professionals themselves do not know what palliative care is. It is still not taught to medical and nursing students.”

Dr M R Rajagopal, Chairman of Pallium India, is quoted in an article titled Redefining Palliative care published in Health Care Executive published on January 9, 2017. He continues, “There is misconception that palliative care is associated with end of life care and is not recognised as a continuous disease management process.”

Dr Rajagopal explains what motivates him and other palliative care enthusiasts: “What keeps the thousands of palliative care workers in India going is the enormous satisfaction that we get out of the difference that we make. Like the man who comes begging for pain relief is able to smile later and gets to complete any unfinished business or a family is saved from social and emotional destruction.”

Read the complete article Redefining Palliative Care.

Insulting the disabled can land one in jail

According to the Rights of Persons with Disabilities Act, 2016, which was passed by both houses of the Parliament in the winter session of 2016, insulting, intimidating or assaulting the disabled can land one in jail.

As per this new law, the following acts will become punishable with imprisonment for a period of six months to five years with a fine:

  • intentionally insults or intimidates with intent to humiliate a person with disability in any place within public view;
  • assaults or uses force to any person with disability with intent to dishonour him or outrage the modesty of a woman with disability;
  • having the actual charge or control over a person with disability voluntarily or knowingly denies food or fluids to him or her;
  • being in a position to dominate the will of a child or woman with disability and uses that position to exploit her sexually;
  • voluntarily injures, damages or interferes with the use of any limb or sense or any supporting device of a person with disability;
  • performs, conducts or directs any medical procedure to be performed on a woman with disability which leads to or is likely to lead to termination of pregnancy without her express consent, except in cases where medical procedure for termination of pregnancy is done in severe cases of disability and with the opinion of a registered medical practitioner and also with the consent of the guardian of the woman with disability.

The detailed law can be read at: Insulting The ‘Disabled’ Is An Offence: Rights Of Persons With Disabilities Act, 2016 Comes Into Force

Here is the link to the gazette notification:
http://www.disabilityaffairs.gov.in/upload/uploadfiles/files/RPWD%20ACT%202016.pdf

Thank you, Justice M R Hariharan Nair (Pallium India’s legal advisor), for directing us to this news.

“Palliative care: transforming care beyond cure”

Department of vocational studies of St Teresa’s College, Ernakulam organised a One Day Seminar entitled “Palliative care: transforming care beyond cure” on 18th January 2017. The seminar was intended for UG/PG level nursing, MSW, Science students, Faculty members, Palliative care volunteers. There were amazing creations of posters by the students on display, depicting ethical issues, symptom management, beliefs, psycho/social/spiritual support, long term care, pain management etc.

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TNG Award conferred on Dr Rajagopal

Pallium India Founder-Chairman Dr. M. R. Rajagopal is the first recipient of the TNG Award instituted by Asianet News in memory of veteran journalist T N Gopakumar. Former Press Council of India Chairman Markandey Katju conferred the honour on Dr. Rajagopal during a ceremony to commemorate the first death anniversary of T N Gopakumar on January 30, 2017 in Thiruvananthapuram.

The award consists of ₹2 lakh, a citation and a memento designed by sculptor Kanayi Kunjiraman. Accepting the award and expressing his gratitude to Asianet News on behalf of patients and palliative care supporters, Dr Rajagopal said, “The two lakhs cash award will go towards providing medicines and support to patients and families being cared for by Pallium India.” Dr Rajagopal also urged the media to be the catalytic force in empowering patients and their families to become partners in the health care system.

Asianet News Chairman K. Madhavan, renowned oncologist Dr. M V Pillai, writer Paul Zacharia, Asianet News Director Frank P. Thomas, editor M. G Radhakrishnan and Kerala Chief Secretary S M Vijayanand, among others, were present on the occasion.

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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.

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PARTING SHOT

The incredible story of B J Miller and Randy Sloan

Dr M. R. Rajagopal, Chairman of Pallium India, writes:

I first came across Dr B. J. Miller a few months ago, when I listened to his TED talk titled “What really matters at the end of life”.

“What a remarkable man,” I thought, “and what an incredible story!”

Anyone who has seen the video cannot miss the fact that B J Miller is a triple amputee. When he was in college, B J Miller lost three of his limbs as the consequence of a whim to climb on the roof of a train. He was electrocuted. The doctors had to remove both his legs, just below the knee, and one arm.

Over the next few months, he continued to live with his three stumps, struggling to not yield to the isolation surrounding him, and discovering ways to keep himself connected with the world. The day he learned not to cover his stumps any more, he says, was his day of independence. He realised that the “exquisitely engineered artificial limbs” were something to be proud of.

He went to medical school and discovered palliative care. To me, it seems so evident that a doctor who has travelled such a journey would be so much more able than one like myself, to identify with his patients and to relieve their suffering.

Dr Miller is featured in a recent article in the New York Times titled “One Man’s Quest to Change the Way We Die“.

The article follows Dr Miller’s life from the time of his accident to being the executive director of a small, pioneering hospice in San Francisco called the Zen Hospice Project, and introduces Randy Sloan, a young tech who had volunteered to take up the challenge of retrofitting a bike for B J Miller. Sloan later became Dr Miller’s patient.

There were two islands of happiness where I wanted to stand up and shout “Hurray!”. The first was when Miller narrated how a nurse, totally illegally, brought in a snow ball for him while he was isolated in a sterile burns unit. That snow ball, he felt, connected him with the universe, which, entirely from a point of view of safety, the hospital was trying to keep out, not quite recognising how totally disconnected with everything he was in there.

The second was the dinner that Randy Sloan and his father shared, just 36 hours before the former died.

But let me not get ahead of the story. Do read the article in the New York Times.

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