The first was a revolutionary change brought about by the Medical Council of India (MCI) by including most aspects of palliative care in undergraduate medical education, beginning with the batch starting in 2019. A cause for celebration no doubt, but for this inclusion to have any real meaning – to be truly incorporated and taught – may take many years, and we are committed to trying to make that happen. Another heartwarming and vitally necessary step has been the MCI’s move to update the MBBS curriculum to include disability rights and dignity.
Things have been moving along in various states. Closer to headquarters – the Kerala palliative care policy was in its 9th year and has had a significant impact. Pain management in Kerala, when we recently checked, was 15 times higher than India’s national average. That sounds like a great deal, doesn’t it? The disappointing truth is that it is only 1/5-th of the global average. When further compared to Western European countries where they have achieved a semblance of balance between access to opioids for people in pain and the prevention of abuse, we are at an abysmal 1/150-th of what they achieve.
We found a wonderful ally in Kerala’s Health Minister Smt. K K Shailaja Teacher, who immediately took up a request from Pallium India to review and revise the state palliative care policy. A committee was convened under the able chairmanship of S.M.Vijayanand IAS, the former Chief Secretary of Kerala. It worked hard to create the revised policy, and rather serendipitously, almost poetically even, the new policy was declared a day ahead of Universal Health Coverage Day. We now eagerly await progress on the implementation framework that is yet to be created.
Good news has also been coming in from various parts of India. Andhra Pradesh has made significant progress with at least one new palliative care program started and many more in the offing. A group of nurses and doctors getting trained in Uttar Pradesh was another milestone. Thanks to the enthusiasm of Prabodh Saxena IAS and the dynamism of Dr. Gopal Chauhan, eleven keen doctors from Himachal Pradesh attended our foundation course. In Haryana, we successfully conducted a 10-day foundation course attended by medical officers and staff nurses. A series of trainings and other events were organized in the North East, attended by our dear friend Gilly Burn. In Odisha, Chief Minister Naveen Patnaik himself announced district-level palliative care program for the state, based on a draft document that Pallium India prepared. Meanwhile, Telengana government initiated a state-wide palliative care activity, and Tamil Nadu has declared the state policy for palliative care.
At Pallium India, we have been gradually increasing our work with those who, at the best of times exist at the margins of society and are relegated to unreachable corners of suffering when ailing. In our country, the list of the marginalised is pretty long; and we endeavor to bridge the gap as much as possible, a little at a time.
In a bid to address the raw deal women are dealt at times of illness in the family, we created a program specifically addressing gender-based issues. The program is not just focused on giving them physical and emotional support, but also at a social level, empowering them with earning capacity. Dr. Sarah Easaw from New Jersey, USA connected us with the women’s wing of the Federation of Malayalee Associations of America (FOMAA), and we have received phenomenal support from this group. The project has been named ‘Ujjwal’, meaning to ‘light up’. More about project Ujjwal may be found at the video link here.
People facing disasters – natural or manmade – have numerous palliative care needs which are never addressed. Those living with illness or life-limiting conditions find their suffering is compounded immeasurably post a disaster. Following the floods that ravaged Kerala in 2018, we launched a pilot program that aimed at studying the palliative care needs in a disaster management setting, in one area of Alappuzha district. While surveying the needs, support was also extended. We are at the final phase of the project now and hope that palliative care will be formally integrated with disaster management state protocols, allowing us to meet the demands of any humanitarian crisis.
Advocacy remains one of the pillars of our work. 2019 found us more engaged than before, both at the micro as well as macro levels. In Trivandrum, a separate team was carved out to oversee public awareness and community participation, with particular attention to college students. The University of Kerala made it part of their official mandate to develop student activities and Pallium India is now an official partner. We conducted an online advocacy skill-building program specifically for palliative care beneficiaries. This program is called “Aarohan” which means ‘to rise’. We have also been increasingly engaging the person on the street, be it through fundraising exhibition of paintings or a Food Festival in Trivandrum or participation in the Airtel Delhi Half Marathon.
At the international level, we continued to speak on behalf of those in need of palliative care in developing countries at various forums including the European Association of Palliative Care (EAPC) conference in Berlin.
As a WHO Collaborating Centre for Training and Policy on Access to Pain Relief, we continue to work closely with WHO Geneva, the South East Asian Region Office (SEARO) and with WHO (India) including participation and creation of the WHO Cancer Pain guidelines which were published in 2019. Our work had expanded beyond Indian borders already like helping out in Bhutan, and this year we were called in to assist and advise the government of Timor Leste to identify training needs for palliative care and access to essential medicines.
We also continue to be a part of the international work of Lancet Commissions, not only taking part in the after-life of the Lancet Commission on Global Access to Palliative Care, but also on the Lancet Commission on the Value of Death.
Just as we focus on policy and access to affordable medicines (including controlled medicines), we lay equal emphasis on professional education. In 2019, we significantly expanded on the Extension for Community Health care Outcomes (ECHO) program, the brainchild of Dr. Sanjeev Arora of Albuquerque, USA. In the current year, we conducted five programs. Typically, our ECHO program is conducted in slots of an hour and a half on the same day every week, for about sixteen to eighteen sessions.
2019 was a year that encouraged us to step out of comfort zones, sometimes gently, sometimes not, but all in all, gave us much to smile about. As we stand at the threshold of a brand-new decade, we hope to continue our work with your support and wish each of you happy transitions, new adventures, steadfast friendships and good health.
It is important to note that the 2019 WHO guidelines for cancer pain do not recommend gabapentinoids, saying, “While gabapentin has been widely prescribed, in 2017 it was rejected for inclusion in the WHO Model list of essential medicines on account of fraudulent evidence.”
It is only eight months since we reported on Dilasa Palliative care centre in Goa.
It was very good to revisit them. In a short period of time it has grown from strength to strength.
We are not surprised that the Indian Medical Association (IMA) has given this program its national award for the best community-oriented project of IMA. Pallium India is proud to work with you on this journey, all at Dilasa.
It is a constant struggle. Opium is grown in India and morphine should be available at low cost for those in pain. But that of course would not suit the Industry.
Fortunate indeed that in the 1990s, Ms Gilly Burn, the British nurse got Dr Yusuf Hamied of Cipla Pharmaceuticals interested in the matter, and we started getting inexpensive morphine.
Unfortunately, in recent years, Cipla stopped producing morphine. Competitors who sell it at five times the cost have taken over. In Kerala, so far we have been OK because, thanks to the initiative of the then drugs controller Mr Venkatakrishnan in the 1990s, Lisie Hospital Pharmaceuticals started giving (and still gives) us inexpensive immediate release morphine. But this fragile arrangement is under constant threat. Often technicalities are brought in so as to stop their production somehow.
Obviously indigenous low-cost morphine production is something we must nurture. Please read about the Rwandan experience that is built on Dr Anne Merriman’s experiment in Uganda which spread over Sub-Saharan Africa. Rwanda avoids US-style opioids crisis by making own morphine
We should all be asking the question that kept Dr. Christian Ntizimira sleepless. “I went home and questioned myself: ‘Why study so many years if I can’t help someone in pain?’”
Most of us in palliative care do not justify euthanasia, whether or not you call it assisted suicide. We believe that every request for assisted suicide is a call for help, “I cannot bear this suffering. Make my life liveable.”
If I am in that sick bed crying out to someone to kill me, I know many will add to my suffering by preaching ideology and by adding to my emotional burden. If in my pain and agony, I take a decision that is sin by their ideology and belief systems, and yet in my last minutes I call out for help, those who made the speeches may walk away from me. But I know Jesus would not have. And I know you would not, Archbishop Paglia.
That simple message, “I will not abandon you whatever be the circumstance”; is the ultimate message of love and peace. Thank you for being in this world.