Palliative Care Status Update in India: East Zone
The States of Bihar, Chhattisgarh, Jharkhand, Odisha, Sikkim and West Bengal contribute towards the East Zone as per the constitution of the IAPC. We thank all the contributors for their support in furnishing the required information.
Background / Context
Bihar is third largest state by population and the twelfth largest by territory with an estimated population of 127 million by 2020.
The incidence of cancer in Bihar is rising exponentially and is ranked second in terms of tobacco related cancers. Projections indicate that the burden of new cases would further increase to 1,36,000 in 2026 as compared to 86,000 cases in 2011 making it fifth most common cancer afflicted state.
Over 60% of the patients with advanced and terminal stages of cancer, other terminally ill patients suffering from non communicable diseases, communicable diseases like HIV and geriatric population etc. need palliative care (PC). Unfortunately less than 5% of them have access to PC.
The initiative for palliative care was taken in 2005 at Indira Gandhi Institute of Medical Sciences (IGIMS) Patna in collaboration with WHO which provided around 5 lakhs morphine tablets.
Morphine tablets were also made available in Mahavir Cancer Sansthan and Research Centre (MCSRC) since 2006, however the availability of Morphine used to be irregular.
Jivdaya extended support to PC services in IGIMS since 2014, and to MCSRC and AIIMS, Patna, since 2018.
The major boost to palliative care facilities occurred after healthcare providers from state attended the CTC2 and CTC3 program [ A joint venture of AIIMS, New Delhi and the Asia Pacific Hospice Palliative Care Network (APHN) as part of the implementation of the National Program for Palliative Care (NPPC) of the Government of India].
The major care providers for PC are centered in Patna at IGIMS, MCSRC, AIIMS (Patna) apart from Homi Bhabha Cancer Hospital and Research centre (HBCH&RC), Muzaffarpur. However, several oncologists not practicing in above mentioned hospitals also prescribe opioids and other supportive measures to patients requiring PC.
Policy
Though the State of Bihar does not currently have a State Palliative Care policy, meetings were held in 2019 for drafting of pain and Palliative care policy under Non communicable disease (NCD) cell, State Health Society, Bihar. Discussions with the officials indicate that the same will be implemented soon as the State is committed towards making rapid strides in the skilling of trained personnel.
Out of 38 districts in Bihar, currently Patna and Muzaffarpur districts have access to palliative care services. Patients, however, also access palliative care via a referral system in 14 districts wherein more than 24 doctors and 34 nurses were sensitized through project in August 2021 by HBCH&RC. Patients can also avail basic assessment and referral via the district Hospital.
Home based Palliative services have begun in Muzaffarpur district through the Palliative care department of HBCH&RC.
Drugs Availability
The opioids available are oral, injectable morphine, and transdermal (TD) patches of Fentanyl at nominal cost.
The dispensing site for opioids is mainly hospital pharmacies in Patna and Muzaffarpur.
Drugs are also available, especially TD fentanylin few of private pharmacy stores.
Limited access to opioids has unfortunately resulted in patients needing to travel to far off distances to procure opioids which is an integral part of PC.
Education: Training and Awareness
Three hospitals in Bihar, namely, IGIMS, MCSRC, and AIIMSPatna have been trained for setting up palliative care (PC) services under the CTC program, a joint venture of AIIMS, New Delhi and the Asia Pacific HospicePalliative Care Network (APHN)as part of the implementation NPPC of the Government of India.
Many doctors and nurses have undertaken the Certificate Course in Essentials of Palliative care (CCEPC) conducted by IAPC, through IGIMS and AIIMS, Patna, which have been recognised as authorised training centres for the course.
Volunteer training programme under IAPC has also been conducted in MCSRC,Patna.
ELNEC training for nurses was conducted in MCSRC, IGIMS and AIIMS, Patna.
Workshop for social workers and volunteers was organised in MCSRC in IAPCON , Patna 2021.
A workshop for doctors and nurses was also organised in AIIMS Patna and IGIMS respectively in IAPCON 2021.
HBCHRC, Muzaffarpur has conducted Palliative sensitisation workshop for doctors and nurses posted in 14 districts of Bihar under NPPC.
Around 500 people have been trained and sensitized towards PC.
Current Challenges towards implementing PC within the state
- Limited availability of opioids in Patna and Muzaffarpur has resulted in patients having to travel quite a distance to procure opioids which is an integral part of PC
- Further expansion of PC services is deterred due to the health care providers lack of awareness about palliative care.
- Lack of effective management of both malignant and nonmalignant life limiting illnesses due to the inadequate training of health care professionals and caregivers.
Future plans to expand PC throughout the state
Much work needs to be done towards educating clinicians in Bihar on the role of opioids in cancer pain and the importance of PC which is underrated as of now.
Nonetheless, since the cancer care is poised to grow at an accelerated pace in near future in Bihar, the advanced education and training for healthcare professionals and involvement of stakeholders will catapult Palliative care into a new orbit.
In the field of healthcare, there lies an immense potential for the state to become the cynosure for PC.
The State Palliative Care Policy will facilitate Medical Colleges to stock, prescribe, and dispense Opioids. This would help decentralize the availability of Morphine and reach easily to the patients in need.
Expansion of palliative care in oncology and non-oncology settings like chronic pediatric and neurological diseases through Government Medical Colleges should be undertaken.
About the Author: Dr. Rita Rani is a Senior Consultant (Radiotherapy) and the Palliative Care in-charge at MCSRC. Dr Rani is having a deep interest in Palliative care and is driven to set up the department of Palliative Medicine at MCSRC. She has been awarded the Commonwealth scholarship for pursuing M.Sc. Palliative Medicine from Cardiff University and has participated in the CTC 3 as team leader to develop palliative care services at her place.
Background / Context
Chhattisgarh has a total population of approx 3 Crores with an approx.10,000 Cancer Patients existing in the State per year, of which only 50% of them may be able to access Palliative Care Services.
The first Palliative Care service in Chhattisgarh began at the Regional Cancer Centre, Pt. J.N.M Medical College, Raipur, in 2013 when Dr Ashish Mazumdar joined the center as Assistant Professor and began the Pain Palliative Care and Oncoanesthesia Services.
JIV DAY Foundation began offering support since 2015 by sponsoring pain medication, one nursing staff, one data operator and one medical officer, to develop palliative care within the state. The major care providers in Chhattisgarh include Regional Cancer Centre Raipur (IP & OP), AIIMS Raipur (IP & OP) at Raipur District and at Chhattishgarh Institute of Medical Sciences (CMIS) (mostly OP) at Bilaspur district. Other Private providers includes Balco Medical Centre (OP/IP/Training), Sanjeevini CBCC Cancer hospital (OP), Apollo Hospital Bilaspur (OP).
Policy
The State of Chhattisgarh has 28 districts and does not currently have a State Palliative Care Policy and has no active efforts taken from the state seen in this regard.
The NPPC (National Program in Palliative Care) began to be implemented in Chhattisgarh in 2016 with a few doctors and nurses being trained for the trainer’s sessions. 1 Doctor and 1 Nurse from RCC Raipur were trained and no Doctors from District Hospitals were trained.
No significant development of Palliative Care in District Hospitals or Primary Health Centres have seen however.
Drugs Availability
Morphine: IR / CR is available at Balco Medical Centre, RCC Raipur, Sanjeevini CBCC Cancer Hospital and AIIMS Raipur.
Inj. Morphine is available at Balco Medical Centre
Fentanyl Patch 12/25/50 is available at Balco Medical Centre, RCC Raipur, Sanjeevini CBCC Cancer Hospital and AIIMS Raipur
Buprenorphine Patch 5/10 is available at Balco Medical Centre, RCC Raipur, Sanjeevini CBCC Cancer Hospital, Apollo Bilsapur and AIIMS Raipur
Tramadol and Tapentadol is available at all the key centers mentioned above.
Education: Training and Awareness
The IAPC’s CCEPC course if offered at Balco Medical Centre since 2019 and approx. 50-60 Doctors and Nurses have been trained and sensitized through this program.
4 Doctors and 4 Nurses were trained through the CTC 3 program from Balco Medical Centre and AIIMS, Raipur
The Balco Medical Center is in the process of beginning to offer DNB in Palliative Medicine
1 Doctor and 1 Nurse from RCC Raipur were trained under the NPPC program under WHO as part of the Train the Trainers program in 2016
Current Challenges towards implementing PC within the state
- Lack of active participation and funding from the state government to develop palliative care within the state.
- Lack of awareness about palliative care among the practicing doctors
- The attitude of the practicing Doctors to consider Palliative Care as ‘Terminal Care’
- The Private hospitals’ and the Government hospitals’ behavior to overlook Palliative care as a ‘Non Profit making’ sector.
Future Plans to expand PC throughout the state
Details will be updated shortly.
About the Author: Dr. Ashish Mazumdar, is trained in Palliative Care from AIIMS, New Delhi under Dr Sushma Bhatnagar (2006-2008). Dr Mazumdar has completed his CCEPC from AIIMS, New Delhi, and the National Fellowship in Palliative Medicine. He also trained in the CTC 3 program, in the NPPC training of trainers program and has been practicing Pain & Palliative Care since 2007.
Dr. Mazumdar founded the Hope Health & Beyond, a Pain and Palliative Care Centre, in Raipur. He is presently Heading the Department of Palliative Medicine at Balco Medical Centre, Naya Raipur, Chattishgarh, and is also the IAPC Center Coordinator at Balco Medical Centre for the IAPC’s CCEPC course. Dr Mazumdar is the State President of the National Association of Palliative Care for Ayush & Integrative Medicine.
Background / Context
It was way back in 2005, when I had made a solemn promise to a catholic priest in a little church in Poland, as he handed me a painting made by a dying patient in his Hospice, that it would hang on the walls of my future Hospice back in India. The painting now proudly adorns the walks of Kosish - the Hospice, a pioneer provisioning Palliative Care in Jharkhand. A promise kept! Focussing on locally available, accessible, affordable & culturally acceptable means paved a path forward. Kosish - the Hospice, has been thus providing palliative care services in Jharkhand and adjacent West Bengal since 2005.
The concept of ‘Preventive palliation for the rural Elderly’ was launched by Kosish in 2009 and in 2019, a second palliative unit was started at Jamshedpur.
The 2021 census report depicted Jharkhand’s population to be at 3.9 crores, with a literacy rate of about 83%. Jharkhand suffers from what is sometimes termed a ‘resource curse’: it accounts for more than 40% of the mineral resources of India, but 39.1% of its population is below the poverty line and 19.6% of children under five years of age are malnourished.
Jharkhand is primarily rural, with only a mere 24% of its population living in cities. As per data provided by the Indian Council of Medical Research (ICMR), the estimated incidence of cancer cases in Jharkhand was 28,135 in 2011, 29,067 in 2012, 30,026 in 2013 and 31,012 in 2014. This steadily increasing trend is very disturbing as over 80% of cases are diagnosed very late. All of these patients require palliative care, in addition to the non-cancer palliative care patients like cerebral strokes, chronic end organ damages, & other neurological disorders.
Policy
Though Jharkhand does not currently have a State PC policy, there are continuing dialogues with the State authorities since 2014 for a State Policy, which is in a draft mode.
Currently only 2 service providers are cater to the palliative care needs patients from 24 districts.
Kosish has an OPD, 11 IPD beds ,home based care, and a community based care for the Elderly. Kosish currently extends home-care upto a radius of about 150km.
Pritpal Palliative care center at Meherbai Cancer Hospital, Jamshedpur, is the other center provisioning palliative care through their OPD and their 8 bedded IP facility.
Drugs Availability
Symptom control was initially possible with locally available drugs which are available at any local pharmacy. Over time we realized that a ‘holistic’ approach to symptom management reduced the need for a specialized drug therapy.
Morphine is currently only available at the Pritpal Palliative Care Center at Meherbai Cancer Hospital at Jamshedpur.
Education: Training and Awareness
Kosish, is a certified center to training doctors, nurses and volunteers by the IAPC and over 25 doctors have been trained till date.
The Institute of Palliative Medicine has partnered with Kosish to provide hands-on training for its Fellowship candidates.
Kosish has recently started two new courses; the Palliative Nursing Aide Program, targeted at empowering rural women, and India’s first death doula certification program called Farishtey.
Kosish had the privilege of being the past ‘Secretariat’ of the Indian Association of Palliative Care, thus becoming a leading example of a case where the Secretariat of a National body was situated in a rural setting.
The first conference on ‘Spiritual Concerns in the Terminally ill’ was conducted at Kosish in partnership with IIT Kharagpur.
No State Government sponsored training programs have been conducted till date.
Current Challenges towards implementing PC within the state
- Despite Kosish’s constant perusal and engagement in continuing dialogues with the Health Department from 2014 for the implementation of PC service provision through the public health system frequent transfers of Health Secretaries and key officials pose a problem.
- The lack of a consistent availability of oral morphine continues to be a problem
Future Plans to expand PC throughout the state
Continue dialogues with the State Government to extend PC activities.
Continue Kosish’s focus to train PC workers from the grass-root levels.
About the Author: Dr. Abhijith Dam has been pioneering the cause of palliative care in the tribal state of Jharkhand & adjacent districts of West Bengal since 2005, where due to illiteracy and rampant poverty the terminally ill is viewed as a ‘mouth less to feed’. Dr Dam’s focus has therefore been on the judicious use of resources which are locally available, accessible, affordable and acceptable by the community with an overall aim on ‘holism’.
Background / Context
The population of Odisha is estimated to be over 4.6 crores. An approximate of 6,20,000 people are in need of palliative care services in Odisha, per year now. Estimates denote that annually an approx. of 55,000 to 60,000 new cancer cases are seen in Odisha. Reports indicate that over 885 people are dying with serious health related issues every day, of which about 535 people would have been surely benefited with timely interventions and availability of palliative care services.
Palliative care in Odisha began in 1991. Dr Vijayaram, the pioneer in use of liquid morphine in India had conducted a seminar in August 1991 at the Kidwai Memorial Institute of Oncology in Bengaluru. Dr Sukdev Nayak attended the seminar and was able to get the ‘WHO sponsored oral Morphine’ at Acharya Harihar Regional Cancer Centre (AHRCC) from Modi Mundi.
AHRCC was the head quarter of the IAPC from 1995 to 1998. It was during then that initial steps were taken at a National level to simplify the NDPS Act. The Odisha State branch of IAPC was formed in 1996.
A 14 bedded indoor PC facility then began at AHRCC in 2001 with a doctor, social worker, occupational therapist, nurse and a pharmacist. Dr Robert Twycross visited and conducted palliative training programs at AHRCC. He also broadcast a radio talk on the All India Radio, Cuttack. AHRCC then began offering the IAPC’s CCEEPC program since 2007.
The palliative care program at MKCG Medical College, Berhampur was initiated by Dr MR Rajagopal in 2008. “Cancer Care Everywhere”, another NGO with the help of cancer care publications, published the Odia translated version of the WHO flier “Cancer Pain Relief”.
Palliative care services then began in AIIMS Bhubaneswar in 2013. In 2014, the 21st International palliative care conference, the IAPCON, was organized at Bhubaneswar.
Major government organizations like Acharya Harihar Post Graduate Institute of Cancer (AHPGIC) in Cuttack, KIMS, AIIMS and Capital Hospital in Bhubaneswar provide institution based palliative care. The Amrit Dhara Palliative Care Trust (ADPCT), a new standalone center, since its inception in December 2020 continuously provides awareness and training in palliative care besides providing OP, day care, tele consultation and counselling services. Reputed doctors trained in palliative care offer their voluntary services at ADPCT.
The Bagchi-Karunashraya Palliative Care Centre is also coming up in the city of Bhubaneswar.
Policy
The State of Odisha has been implementing the District Palliative Care Programme (DPCP) since November 2019, despite the absence of a State Palliative Care Policy. The Covid-19 pandemic has unfortunately deterred the adequate assessment of the program implementation since March 2020.
Palliative care services are currently available in ten of Odisha’s thirty districts. Services in these districts include OP and IP services.
30 Doctors and 30 Nurses, and 2 doctors each from Capital Hospital, Bhubaneswar and IGH, Rourkella, underwent training at AHPGIC, Cuttack to get empowered for the initial level of start up care.
Navarangpur district has been selected as the first model district to deliver home based palliative care services in Odisha, in addition to their current OP and IP service provision.
Drugs Availability
Oral Morphine is available at the Acharya Harihar Post Graduate Institute of Cancer (AHPGIC) in Cuttack, KIMS, AIIMS and Capital Hospital, and at the Amrit Dhara Palliative Care Trust (ADPCT) in Bhubaneswar. Oral morphine is also available at approx. 10 of the district hospitals.
Education: Training and Awareness
The IAPC’s Certificate Course in Essentials of Palliative Care (CCEPC) is being conducted routinely twice a year in AHPGIC, Cuttack and AIIMS, Bhubaneswar. An approx. of 1100 doctors and nurses have already completed this course.
There are other volunteer training programs being conducted in different centres in the State.
ADPCT has been continuously engaged to sensitize and train volunteers and has trained an approx. 80 volunteers since its inception.
Current Challenges towards implementing PC within the state
- Limited palliative care facilities
- Lack of awareness regarding palliative care
- Limited Education and training
- Limited financial allocation for Palliative care
- Unavailability of drugs especially Morphine
- Socio economic conditions of patients and their families
- Absence of a State Palliative Care policy
Future Plans to expand Palliative Care throughout the state
Odisha is working towards offering all-inclusive palliative care services in the near future. This is envisioned to be done via integrating of all palliative care organizations, centres and institutions along with the district palliative care program by creating a sustainable model for palliative care delivery.
About the Author: Dr. Mami Parija is a Senior Consultant, Anaesthesia, at Apollo Hospital, Bhubaneswar, Odisha. Dr Parija is also the President at the Amrit Dhara Palliative care Trust.
Background / Context
The total estimated population of Sikkim in 2021 is 6,58,019. The Population based Cancer registry of Sikkim (2008) indicates that approx. 2211 people get cancer each year. Reports also indicate that approx. 5000 people are currently living with cancer in Sikkim; of which at least 3000 of them are in need of opioids to manage their severe pain.
Basic Palliative care services including basic home care services are primarily available only at the STNM Super Speciality Hospital, in Gangtok (East Sikkim), which is also the State’s Tertiary Care Hospital.
The State Palliative Care Unit has been established at the STNM Super Speciality Hospital. Other District Hospitals which are geographically dispersed from this center are yet to provision complete palliative care services.
Patients from the Singtam (East Sikkim) and the Mangan (North) District Hospitals go to Gantok to access palliative care services. Whereas, patients from the geographically distant Namchi District Hospital (South Sikkim) located 80 kms away from the STNM Super Speciality Hospital, and the District Hospital Gyalshing (West Sikkim) located 91 kms away have limited access to palliative care services due to geographical constraints.
Sikkim also currently does not have any NGO’s or private institutions involved in provisioning palliative care services.
Policy
Although Sikkim does not currently have a State Palliative Care Policy, it is promising to note that efforts towards designing one are underway.
Palliative care services are currently primarily available only at STNM Super Speciality Hospital, Gangtok. Barring Gangtok, palliative care services are only now picking up in the rest of the Singtam (East) and in the other 3 districts, namely Namchi (South), Gyalshing (West) and Mangan (North).
Though a budget has been allocated towards implementing the National Program for Palliative Care within the State, the effective implementation is yet to take off.
Drugs Availability
Necessary pain medication other than morphine, is currently available in all district hospitals.
Access to morphine is however, currently not available in the State.
Education: Training and Awareness
The State Government has been spearheading education activities in the State to provide virtual training for Clinicians, Doctors, Nurses, Paramedics and other MLHPs.
1 doctor and 2 Nurses were sent to Karunashraya, Bengaluru, in 2018, for a 10 day foundation course in Palliative Care.
3 Doctors from across the State have undergone the Master Training for the Trainers program in May 2021, provided by the NHRC, Govt. of India. Additionally, 3 doctors were trained through the Master Training for the Trainers program, again in September, 2021, which was organised by the State Government.
In September 2021, a virtual sensitization workshop was conducted for different takeholders from the state to improve Opioid availability. Stakeholders included doctors, pharmacists, drug inspectors, Senior medical stores personnel among many others from the State.
Sikkim therefore currently has an approx. total of 10 doctors and nurses currently trained in palliative care.
An approx. 15 volunteers from Namchi District (South) have recently completed Pallium India’s Volunteer Training program also.
No other courses for palliative care training are available in the State currently.
Current Challenges towards implementing PC within the state
- The lack of unavailability of morphine for use in palliative pain management. Patients currently access morphine from the neighbouring State of West Bengal
- The inadequate infrastructure at the District Hospitals to provision Palliative Care
- Inadequate number of training programs in the state
Future Plans to expand PC throughout the state
To increase training activities to create a cadre of palliative care trained health professionals.
To continuously sensitize, engage and encourage State Government Officials to upscale the various palliative care initiatives in the State.
About the Author: Dr. Sangita Subba is a Consultant, General Medicine, at the District Hospital Namchi, South Sikkim. She has successfully completed her 10 day Foundation Course in Palliative Medicine and also the Master Training of the Trainers program, in palliative care.
Background / Context
The population of West Bengal is approx 1 billion. Over half of all deaths in West Bengal are attributed to NCDs, with 30% deaths due to circulatory system disorders (24.2% and 3.9 % deaths were due to cerebrovascular diseases and ischemic heart disease, respectively) followed by 11% due to respiratory disease and 8% due to neoplasms. This high burden demands for good quality palliative care.
Over the past ten years, Palliative care in West Bengal has developed by leaps and bounds. Institutions such as the Tata Medical Center, the Narayana Super Specialty Hospital and Thakurpukur Cancer Center now have stand-alone Palliative care units, while centers like the Institute of Neurosciences and Fortis Hospital are beginning to implement Palliative care for non-oncological life-threatening illnesses.
The Tata Medical Center offers OP, IP, Hospice and tele-consultation services, while the Narayana Super Specialty Hospital and the Thakurpukur Cancer Centers offer OP services and home based palliative service.
Despite the Government Medical College not having a dedicated palliative care unit, the Department of Radiotherapy offers pain management by dispensing the necessary medication and by offering basic palliative care services in their OPD.
Currently, 18 District Hospitals in West Bengal offer weekly outpatient clinics for palliative care.
NGOs such as Ruma Abedana Hospice among a few others, cater to the needs of the palliative care patients at their end of life situations.
Policy
The Government of West Bengal instituted the palliative care program under the aegis of the National Program for Palliative Care in 2016.
By 2019, the State Government implemented palliative care OPDs in eighteen district hospitals of the state. These weekly OPDs cater to the palliative care needs of those patients attending the district hospitals.
Drugs Availability
All the essential drugs including strong opioids are available at all the Cancer Institutes and Government Medical Colleges in Kolkata.
However, procuring opioids in other parts of the State is unfortunately, still a challenge as most stocks are limited to only Kolkata.
Education: Training and Awareness
The State Government began undertaking initiatives to offer training programs in 2016 to empower the medical and paramedical professionals from the various District Hospitals, Primary Health Care Centers, the Sub-Centers and the general community.
With the support and guidance from the experts in palliative care, the State Government has formulated and disbursed training modules to all the medical officers and nurses in the various district hospitals.
A bi-annual training program for designated medical officers and nurses have been conducted and a total of seven training programs have been conducted till date.
The IAPC’s CCEPC course is offered at the Narayana Super Specialty Hospital.
The Tata Medical Center is also a designated center for the 10 day clinical rotation for participants undergoing the 1 year Fellowship training under IPM, Calicut.
Current Challenges and future plans to overcome them
- Development of community palliative care is in the pipeline, efforts are underway to empower general practitioners to provide primary palliative care
- Limited availability of opioids across the State
- Efforts are underway to start palliative care for non-malignant palliative care
- The state plans to expand the palliative care outreach by empowering the medical officers in the Primary Health Centers, the community health volunteers and ASHA workers.
About the Author: Dr. Shrikant Atreya is a Senior Consultant in Palliative Medicine, Department of Palliative Care and Psycho-oncology at the Tata Medical Center, Kolkata. Dr Atreya is also the Technical Advisor for the palliative care program, Government of West Bengal. He is passionate about developing community based palliative care by empowering the general practitioners into providing primary palliative care. Dr. Atreya is actively engaged with a team of experts in palliative care and family medicine to develop modules for training general practitioners and family physicians in palliative/end of life care.