Palliative Care Status Update in India: West Zone

The States of Goa, Gujarat, Madhya Pradesh, Maharashtra and Rajasthan contribute towards the West Zone as per the constitution of the IAPC. We thank all the contributors for their support in furnishing the required information.

GOA

Background / Context

Goa is the smallest state of the Indian union and has an area of 3702 km2.It has the 2 districts of North Goa and South Goa and a population of 1.82 million.

The first hospice in India, Shanti Avedna, was started by Dr. Luzito DeSouza in Mumbai. The 30 bed Goa unit was started in 1986 and to date has treated over 30,000 patients completely free of cost

The Goa Medical College and Hospital is the premiere and only tertiary care government hospital in the state. The Department of Medical Oncology was started here in August 2018. More than 3000 cancer cases have been registered to date with an average of 1000 new cancer patients diagnosed each year. Since more than half the patients present in advanced stage of the disease, the need for setting up Palliative care services was acutely felt. Since its inception the department has arranged a series of lectures and seminars on Palliative care to sensitize doctors and nurses in the health care sector to the needs and the scope of Palliative care in Goa. Several foundation courses in Palliative care have also been organized to train doctors, nurses, counselors, social workers and volunteers.

The other palliative care center in Goa is the 25 bed Dilasa Palliative care Center, inaugurated in December 2018 and is an initiative of the Indian Medical Association, Ponda branch.

There are several Non–Government Organisations (NGOs) working in tandem with doctors and nurses to make palliative care available in remote areas of Goa. Sabrcare, a trust started by young enthusiastic professionals works mostly in the area of childhood cancer and offers support to families of children with cancer. NoviSurvat, is another charitable trust dedicated to helping the poor with their health needs.

Policy

The state has decided to establish a State Palliative Care Policy, which is currently being drafted.

Drugs Availability

Narcotic analgesics like morphine and fentanyl are available in the state and needy patients are able to procure them from Goa Medical College as well as district hospitals.

Education: Training and Awareness

Currently a team of four, 2 doctors and 2 nurses from the Goa Medical College are undergoing training under the Cancer Treatment Center Palliative Care Training Programme, under the auspices of All India Institute of Medical Sciences, New Delhi and the Asia Pacific Hospice Network with the aim of setting up Palliative Care Services in Goa Medical College.

In August 2021, the 3 day ELNEC course was conducted in Goa Medical College which was successfully attended by 52 nurses, 40 from Goa Medical College and 12 nurses from District hospitals and Primary Health Centers.

The Goa Medical College and Hospital has also provided a series of lectures and seminars on Palliative care to sensitize doctors and nurses in the health care sector

Several foundation courses in Palliative care have also been organized to train doctors, nurses, counselors, social workers and volunteers.

Current Challenges towards implementing PC within the state

  • Lack of awareness among the people regarding the role and scope of palliative care.
  • Lack of trained health care workers to provide palliative care.

Future Plans to expand PC throughout the state

There are plans to conduct classes in Palliative care for doctors and nurses from district and sub-district hospitals and the primary health centers to enable services to be taken to patient’s doorsteps.

With the enthusiastic participation of the health care workers and the active support of the State Government, we hope to soon have a palliative care network that covers every corner of Goa and dream of making Goa a pain-free state.

About the Author: Dr. Anupama Borker is a Senior Consultant, Department of Medical Oncology at Goa Medical College and Hospital, Goa.

GUJARAT

Background / Context

Palliative Care in Gujarat started way back in 1988 with the establishment of a hospice in Ahmedabad with the efforts of Dr. M. T. Bhatia, Gujarat Cancer Society & Gujarat Cancer & Research Institute. Services have now evolved to having a well-established Department of Pain & Palliative Medicine at GCRI, which is the nodal center of MD in Palliative Medicine, education, training, advocacy and for creating awareness about Morphine availability.

Gujarat has contributed immensely towards the formation of IAPC in 1994 at Ahmedabad, forming Gujarat Chapter of IAPC and strengthening its mission & vision through sharing its many responsibilities.

The population of Gujarat as per the 2011 census is 6.04 Crores. Gujarat population in 2021 is estimated to be 7.04 Crores in 2021. The Total population needing palliative care is 1064 per 1 lakh as per Global Atlas of Palliative Care, 2nd edition (pg 25-30). The need for Palliative care in Gujarat is more than 8 lakh and approx. 97,000 people are in need of Palliative Care services in Ahmedabad alone. The Department of Pain & Palliative Medicine & Hospice caters to 20,600 new patients every year & their morphine consumption is 25 Kg. per year. Other centres render care to approx. 200 patients per month. This translates to an approx. coverage of 12-15% of those in need of PC services in Gujarat.

Key providers in the state include the Department of Pain & Palliative Medicine at GCRI which is affiliated to B J Medical College & Gujarat University for post-graduate program in Palliative Medicine. The key provider in Hospice & Home care services is the Community Oncology Centre &Hospice, run by The Gujarat Cancer Society. Other providers include Shri Krishna Hospital at Karamsad, Guru Govind Sinh Hospital at Jamanagar, HCG Hospital at Ahmedabad and the Bharat Cancer Centre at Surat. Palliative care services at Siddhpur Cancer Care centre and Rajkot centre are supported by GCRI. Most of the above mentioned centres are in cancer centres run by a Trust or Government.

Policy

Despite not having a State Palliative Care policy, Gujarat has implemented the NPPC in 14 of its 26 districts, by following uniform objectives and guidelines for providing palliative care as designed by the MoH&FW, Govt. of India. We therefore feel that it is not necessary to have a separate state policy.

Implementation of NPPC began in March 2017 in 6 districts, while another 8 districts were added in March 2019. Services in other districts couldn’t be established due to the COVID pandemic.

Drugs Availability

Gujarat has pioneered the implementation of the Amended NDPS Rule and has a well established system of licensing to trained professionals &to RMIs. Following the initiatives taken up by Pallium India in Apr 2017, we marched on the road map decided by a meeting with Commissioner, Health, GoG and formed a task force. We first got the “SOPs for RMI” printed. We then approached the FDCA, to take up the new task of issuing licenses to RMIs & RMPs. We started the 3day training of RMPs as decided by the IAPC.

The department is a “Training hub” for the 3 days’ course for Medical use of ENDs for RMPs. As of date 72 doctors from various districts have received training in medical use of ENDs. Many of the Medical Officers from District Hospitals are trained for Medical Use of ENDs, which has led to availability of Morphine at district hospitals.

Education: Training and Awareness

The Dept. of Pain & Palliative Care at GCRI is recognized center for the IAPC’s “Certificate Course in Essentials of Palliative Care” Part A & B courses since 2012. It is also a recognized centre for the IPM Fellowship program & for the six weeks’ course in collaboration of TIPS, Pallium India & IACA. Over 300 doctors & nurses are trained under these courses. All these students also visit the Hospice for a better understanding of the concept of Hospice & Home care.

Training of CHC & PHC doctors, nurses & counselor was started under NPPC program in Mar 2017. We have designed a 3 days’ syllabus for understanding the concept of palliative care, hospice care, pain management, to identify the palliative care needs of patients, and to provide nursing care. A total of 60 doctors & nurses have been trained from 14 districts covered under NPPC program.

About 1000 doctors & nurses & other paramedical staff from Gujarat have been trained /sensitized under various courses and training programs conducted by the Department of Pain &Palliative Medicine at GCRI. Presently there are 15 centres for palliative care across Gujarat, run by trained doctors and nurses in the subject.

Current Challenges towards implementing PC within the state

  • The availability of morphine at PHC & CHC is a very big challenge.
  • The COVID 19 pandemic has halted all activities.
  • Several Private or Trust run cancer centres have not yet accepted palliative care in their practice despite treating a huge number of cancer patients.
  • It has also been challenging to make NPPC a popular program with strict implementation.

Future Plans to expand PC throughout the state

We envision the successful implementation of the NPPC program and the efficient running of Health & Wellness centres in urban and rural area as the next steps towards making palliative care available at the door step of all those patients who need it.

About the Author: Dr. Geeta Joshi is the Former Prof & Head, Dept of Palliative Medicine and the Dy Director at GCRI. Dr Joshi is currently the CEO of the Community Oncology Centre & Hospice, run by The Gujarat Cancer Society, Ahmedabad. She is a recipient of SAARC Country award for Excellence & Leadership in Palliative Care (2017-2018) awarded by the Cancer Aid Society.

MADHYA PRADESH

Background / Context

Palliative care in Madhya Pradesh began with the Indore Cancer Foundation, about 26 years ago, in 1995. Initial services only focused on spreading awareness, end of life care and counseling without a dedicated palliative care physician. It is promising to note that over the past 8 years, several physicians trained in palliative care, either as an MD in Palliative Medicine or with a short certificate course in palliative care, have been working within the State.

The actual number of cases of cancer diagnosed or deaths due to cancer or even those in need of palliative care services is currently unknown in Madhya Pradesh’s 86.6 million people.

Palliative care services are currently available at CHL Cancer Hospital, SRJ CBCC Cancer Hospital, Pain and Palliative care clinic at the Government Cancer Hospital, BSF Composite Hospital, RJN Apollo Spectra Hospital, the Pain and Palliative Care Centre at the Lake City hospital, Bombay Hospital, Choithram Hospital, Christian Hospital and at the Tejankar Hospital.

Policy

The State of Madhya Pradesh does not currently have a State Palliative Care policy. However, The Government of Madhya Pradesh began initiating the Palliative Care Program since 2018 under the umbrella of the National Program for Palliative Care (NPPC) with a primary program orientation.

4 of the State’s 55 districts have access to palliative care services.

Drugs Availability

Morphine / Tramadol tablets are available at all the centers mentioned above.

Methadone is available at CHL Cancer Hospital, Indore and at SRJ CBCC Hospital, Indore.

Buprenorphine and fentanyl patches are available at CHL Cancer Hospital, Indore, SRJ CBCC Hospital, Indore, Lakecity Hospital, Bhopal and the Tejankar Hospital, Ujjain.

Education: Training and Awareness

The Indian Association of Palliative Care (IAPC) conducted a 2 day virtual teaching and sensitization workshop on palliative care for 51 of Madhya Pradesh’s District Zonal officers (doctors) in March 2021.

The Indore Cancer Foundation, in collaboration with Shri Vaishnav Vidyapeeth Vishwavidyalay, Indore, trained a total of 20 doctors and nurses through a 3 day short course in Palliative care in 2020.

The IAPC’s CCEPC was earlier offered at the Choitram Hospital, Indore by the (Late) Dr Arti Kaul Patel.

Current Challenges towards implementing PC within the state

  • Lack of awareness regarding palliative care amongst the general community
  • Limited awareness and acceptance regarding palliative care amongst the practicing oncologists and physicians
  • Difficulty in procuring essential narcotics or sedatives within the state.
  • Inadequate number of palliative care trained physicians

Future Plans to expand PC throughout the state

To establish palliative care centers in the major areas of MP by training staff who can provision OPD/IPD and home care facilities and  procure essential narcotics for these centers

Conduct more in-depth training for the recently sensitized Zonal Officers

Conduct similar practical sensitization sessions for nurses from the various district hospitals

Provide training for the PHC and field level staff

Generate  awareness regarding palliative care among the general community so that the demand for such services increases.

About the Author: Dr. Gauraiya Chinchalkar is an MD Palliative Medicine from the Tata Memorial Hospital, Mumbai. She worked as an Assistant Professor in Palliative Medicine at the Homi Bhabha Cancer Hospital, Tata Memorial Centre, Varanasi. Dr Gauraiya is the Bruce Davis Gold Medal Winner (2014) and the ASCO IDEA PC award winner (2020).

MAHARASHTRA

Background / Context

Joint Director NHM Dr. Sadhana Tayade pariticipated in a rally to raise awareness on World Hospice and Palliative Care Day 2018

Dr. DeSousa was the first to develop the hospice movement in India by establishing the Shanti Avedna Sadan in 1980. After many challenges, the hospice opened in 1986. A formal palliative care service was started for cancer patients in Tata Memorial Hospital in 1996 by Dr MA Muckaden and her team. An outpatient palliative care clinic for adult cancer patients was set up, followed by a consultation-liaison service in the inpatient setting. She also set up the first Paediatric Palliative Care clinic in the country in 2000. The hospital’s home-based palliative care services started soon after.

Cipla Palliative Care and Training Centre, Pune, inaugurated its 55 bedded hospice in 1997. It added its home care service in 2004 and an OPD in 2007.

The Medical Council of India (MCI) recognized Palliative Medicine as a speciality in 2010, and the first specialist Palliative Medicine training, the MD in Palliative Medicine, commenced at Tata Memorial Hospital, Mumbai, in 2012.

From 2015 onwards, many newly formed NGOs and individual medical professionals set up clinics and home care services in Mumbai. Hospitals in the private sector, notably KokilabenDhirubhai Ambani Hospital (KDAH) and the Hinduja Hospital, also set up palliative care services.

In Maharashtra, approximately 1 million patients need palliative care. Palliative care units in semi-urban and rural settings have been developing since the formulation and implementation of the Maharashtra State Palliative Care Policy in 2013. One of the primary missions of the State Palliative Care Policy is the identification of key institutions for Palliative Care development such that the needy population has access to quality palliative and end of life care.

Policy

Joint Director NHM Dr. Sadhana Tayade in meeting with the Mumbai Palliative Care Network on 1st Nov 2019 along with district representatives

Maharashtra has been the second state to work on formulating and implementing the Palliative Care Policy. The state government passed the Government Resolution for the implementation of the policy on 15thJune, 2013.

Collaboration between the State Palliative Care Cell and network of Palliative Care providers, both public and private, is strong.

Of Maharashtra’s 36 districts, the current focus is on 25 districts, of which eight new were added this year.

The seventeen districts covered in the past include Amravati, Bhandara, Chandrapur, Gadchiroli, Wardha, Washim, Satara, Nandurbar, Osmanabad, Parbhani,  Sindhudurg, Palgar, Pune, Nasik, Nanded, Jalna and Ratnagiri  all have OPD, IP as well as home care services by staff nurse and counsellor/ social worker.

Nagpur, Aurangabad, Thane, Ahmednagar, Lathur, Jalgoan, Beed and Hingoli are the eight new districts added this year, in which the staff is currently in the process of being trained.

The State also has a specific inclusion of Paediatric Palliative Care (PPC) in its policy. The considerable work therefore been done in this area is as follows:

  • A 5 year (2010-2015) International collaborative Advocacy project involving DFID (UK), ICPCN, IAPC and Tata Memorial Centre was completed at three centres (Jawhar, LTMG (Sion) Hospital and MGM Hospital, Navi Mumbai). The PPC centre was started at Aurangabad.
  • Tata Memorial Centre has started a collaborative project with Cipla Foundation (CF) to set up five PPC centres. The first centre started at Chhatrapati Shivaji Maharaj Hospital, Kalwain and the second at BYL Nair Hospital, Mumbai in June 2021. Over 700 children are covered under this project so far. Plans for a third centre at KEM Hospital for Neonatal Palliative Care is in process.
  • A Pediatric Palliative Care Project with support by CF has also started at the Wadia Hospital from May 2019.
  • More than 3000 HCWs (Doctors, Nurses, Social workers and ASHA workers) have been trained and educational material, film and manuals were prepared.
  • Pediatric Palliative Care was included in the MD Pediatrics Syllabus and Palliative Care was included into the UG curriculum of Maharashtra University of Health Sciences in 2013. The Indian Association of Paediatrics has started a certificate course on Pediatric Pain and Palliative care.
  • Integrated Child Protection Scheme (ICPS) was approved by the Ministry of Women and Child Development for sponsorship of Rs 2000/- to families.

Drugs Availability

The availability of drugs, especially opioids, remains to be an issue in rural and semi-urban regions.

This is an ongoing agenda in the training, covering awareness of the RMI process, and working with the local FDA.*

(*The information provided is based on informal feedback and consultations within the Mumbai Palliative Care Network and does not claim to be comprehensive and updated)

Education: Training and Awareness

Training of Trainers 31st January 2020 PHI Nagpur

Capacity building has been a driving force in implementing the policy.

Following the policy development, the Department of Palliative Medicine at Tata Memorial Hospital conducted various training programmes. In the last 4 years, the Mumbai Palliative Care Network, as described below, has been instrumental in training the trainers programmes.

The pandemic necessitated virtual training; four formal virtual training programmes were conducted by Mumbai Palliative Care Network, a conglomeration of public, private and voluntary sector palliative care providers, since September 2020 to date, reaching 82 healthcare professionals from 16 districts.

Individual organisations also conducted their training for general practitioners and nurses through the state

Current Challenges towards implementing PC within the state

  • Human resource constraints which have been magnified during the pandemic
  • Dedicated time for medical, nursing, and community workers to commit to palliative care
  • Difficulty in accessing drugs in the rural and semi-urban regions
  • Lack of awareness on palliative care and the absence of integration of palliative care providers with the existing health care system ensured that COVID 19 patients and caregivers who could have benefited were deprived of palliative care
  • Lack of awareness of the benefits of early integration of palliative care in the trajectory of a patient’s life-limiting condition, results in patients seeking help typically at a very late stage of their disease.
  • Palliative care continues to be identified mainly with cancer patients, and there is a need to bring about greater awareness of its effectiveness for non-cancer patients.

Future Plans to expand PC throughout the state

Immersion Workshop, 8th August, Joint Director Technical Dr. Vijay Kandewad addressing the participants

This informal collaboration between the State Palliative Care Cell and network of Palliative Care providers, both public and private, initiated in Mumbai and named 'Mumbai Palliative Care Network' (MPCN), soon to be extended to the entire state, has been working with the State Government on creating awareness through advocacy, training and implementation at various levels.

There is a need for NGOs and other private organisations to spread palliative care through clinics and home-based services in Tier 1, Tier 2 and Tier 3 cities.

 

The Authors

This article has been written with inputs from following professionals from Mumbai Palliative Care Network:
Dr. Jayita Deodhar, Mrs. Pheroza Billimoria, Dr. Armida Fernandes, Ms. Sonalini Mirchandani, Dr. Mary Ann Muckaden, Ms. Pouruchisti Wadia, Dr. Pradnya Talawadekar

RAJASTHAN

Background / Context

Rajasthan is India’s largest state covering a land area of 342,239 km2 with a population of over 75 million and a crude death rate of 8.2. It is estimated that Rajasthan detects an approx of 40,000-60,000 new cancer cases per year, and an approx. of  300,000 – 400,000 patients need care. An approx. 180,000 of patients are said to be living with cancer at any given point in time in Rajasthan.

The Ratio of services to population is seen to be 1:11,301,000 (McDermott et al JPSM, 2008) with only 5 centres being able to render care for these patients.

Comprehensive palliative care services were initiated in Rajasthan in 1998, at the Bhagwan Mahaveer Cancer Hospital and Research Centre (BMCHRC).

The first hospice in the state is the Khailshankar Durlabhji Avedna Ashram.

In the government sector, Sawai Man Singh Hospital (Jaipur), Acharya Tulsi Cancer Treatment Institute (Bikaner), AIIMS (Jodhpur) and the RNT medical College (Udaipur) deliver palliative care services.

Three centres are ESMO designated centres of integrated Palliative care and Oncology.

Medical Colleges with a palliative care department include Geetanjali Medical College (Udaipur), Mahatma Gandhi Medical College (Jaipur), Pacific Dental College (Udaipur) and RNT Medical College (Udaipur).

Policy

A State Palliative Care Policy has been drafted in consultation with the State Government Officials, and has been submitted to the Medical and Health Department, Govt. of Rajasthan in 2017.

As a part of the NPPC implementation, a minimum of 1 Doctor and 1 Nurse from each of Rajasthan’s 34 districts have received a 1 week training in palliative care. More number of doctors and nurses were deputed for training from those districts which are bigger in size eg. Bhilwara.

At the CHC level, Palliative Care services are available at CHC Jhalawar, DH Bikaner and at CHC Pali.

Drugs Availability

Chronic Pain management services are available at the Medical Colleges of Ajmer and Jhalawar.

The Government hospitals have access to all non-opioid medications for pain as they have included in their Essential Drug Lists (EDL).

Oral Morphine and other Step 3 opioids are available in Jaipur (BMCHRC and Sawai Man Singh Hospital), Bikaner (Acharya Tulsi Cancer Treatment Institute), Udaipur (Geetanjali Medical College) and at Jodhpur (AIIMS).

The per capita utilization of legal morphine in Rajasthan is 0.05 to 0.08 mg/capita (2019), when compared to the National average of 0.11 mg/capita and the Global average of 6.27 mg/capita. (MRR, Safiya. Karim Booth, JGO 2017, and the Jivdaya Foundation and BMCHRC pharmacy)

Education: Training and Awareness

The IAPC held its first ever Research Conference at BMCHRC in December 2013 in which Dr Santosh Chaturvedi, Dr Prabha Chandra, Dr Sushma Bhatnagar, Dr Manjiri Dighe, Dr Rajeev Gupta and Dr Anjum Joad were faculty.

The NHM Rajasthan has sensitized all ASHAs and ANMs towards Palliative Care; with ASHA workers having access to dedicated modules on palliative care.

The BMCHRC and NHM have jointly delivered a 90 minute class on Palliative care for 60 Counsellors/ Social workers.

A sensitisation programm for 234 doctors and nurses in 7 districts under the National Cancer Control Programme was conducted in 2012-2013.

A 90 minute Foundation class for 58 doctors who were newly inducted into government service was also conducted. Thereafter 330 government doctors and nurses in Community health centres, from all of Rajasthan’s 34 districts underwent a 1 week training program under the aegis of  National Program for Palliative Care, between 2017-2020 at BMCHRC and State Health Institute of Family Welfare.

The IAPC’s CCEPC has been offered at the BMCHRC from 2008, and has till date benefited over 600 health care professionals.

The CTC program which is a collaborative program between AIIMS, the Ministry of Health, the Lien Collaborative and the APHN has trained 24 doctors and nurses working in cancer hospitals from Udaipur, Jodhpur, Bikaner and Jaipur

The 6 week Jaipur Certificate in Palliative Medicine offered by Pallium India / IACA at BMCHRC, has successfully trained 25 Doctors and Nurses from across the State.

Several NFPM and NFPN candidates also complete their attachments here.

Recently, the SMS College, Jaipur, has been recognized to offer MD in Palliative Medicine, with 2 seats allocated for the same. Rajasthan, is now one of thefour states in India, to offer the MD in Palliative Medicine!

Current Challenges towards implementing PC within the state

  • Difficult Terrain, limited literacy rates (66% as per Census 2011) and poverty
  • The wide geographical dimensions of the state (area of 342,239 km2) which impose challenges of coverage

Future Plans to expand PC throughout the state

The State of Rajasthan is working towards organizing and implementing the recently approved MD in in Palliative Medicine while also making efforts to begin offering DNB in Palliative Medicine.

About the Author: Dr. Anjum Joad Khan is currently the Director, Dept. of Anaesthesia and Palliative Care Medicine, Bhagwan Mahaveer Cancer Hospital and Research Centre, Jaipur. She has been working at BMCHRC since 1997. Dr. Anjum is the Organizing Secretary of IAPCON 2022.

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