Palliative Care Status Update in India: North Zone
The States of Chandigarh, Delhi, Haryana, Himachal Pradesh, Jammu & Kashmir, Ladakh, Punjab and Uttarakhand, Uttar Pradesh contribute towards the North Zone as per the constitution of the IAPC. We thank all the contributors for their support in furnishing the required information.
Background / Context
Chandigarh is a small city with an estimated population of 11,69,244. The exact need for palliative care in the Union Territory is difficult to estimate since patients from different States of India come here for treatment. Figures from the Chandigarh Hospice and Palliative Care Service report that they receive referrals from District Hospital, Private hospitals and the general community and provide an average of 8000 OPD consultations for cancer patients per year and register an approx. of 500 cancer patients in their IP (Hospice) per year.
The Post Graduate Institute of Medical Education & Research, Chandigarh, (PGIMER) offers palliative care services in the State in association with the Indian Red Cross Society, Chandigarh. The Department of Radiotherapy and Oncology at PGIMER is presently headed by Dr Sushmita Ghoshal who has a keen interest in palliative care. All the consultants in the department are trained and certified to practice basic palliative care, with residents also required to take up the palliative care certificate course during their second year of residency.
The Chandigarh Hospice and Palliative Care Service was established in 2000 under the guidance of Dr Firuza D Patel to integrate Palliative Care into ‘Comprehensive Cancer Care’ and provide ‘Continuity of Care’ for cancer patients. This 20 bedded center is a joint project of the Department of Radiotherapy & Oncology, PGIMER and the Indian Red Cross Society, Chandigarh. Since the palliative care team at the center shares the outpatient department with the Oncology team, most patients are familiar with the palliative care team. The center provides OP, IP, Home care, Tele-consultation services and bereavement services. Home care services are provided to patients from Chandigarh and from the neighbouring towns of Mohali and Panchkula.
Palliative care services are also available at the Department of Radiation Oncology at the Government Medical College and Hospital. Dr Awadhesh Kumar Pandey, the HOD of the department and all the other consultants in the department are also trained and certified to practice Palliative Care. Dr Sukanya Mitra, HOD of the Department of Anaesthesia also practices palliative care within the same institute.
Policy
Chandigarh, currently does not have a Palliative Care policy.
The current institutions named above currently render services to several patients from the Northern part of the country. Home care services are available for tri-city of Chandigarh, Mohali and Panchkula and the Chandigarh Hospice and Palliative Care Service provides hospice services.
Drugs Availability
Morphine and other opioids are available in the city and can be purchased from any authorized pharmacy with proper prescription from the treating physician.
Oral Morphine is dispensed free of cost at Chandigarh Hospice and Palliative Care Service to needy patients who have registered with the hospice.
Morphine and Opiods are also available in this State Medical College.
Education: Training and Awareness
The Punjab University regularly conducts orientation visits or sessions for students enrolled under their Master’s Program in Social Work.
A short term 2 weeks, hands on training in palliative care is regularly conducted for PG students from the Nursing Institute at the Chandigarh Hospice and Palliative Care Service. Additionally, Under Graduate students from the local medical college visit the hospice as part of their community medicine posting, during which they are sensitized in palliative care.
The IAPC’s CCEPC course is regularly conducted at the Department of Radiotherapy at PGIMER.
The Auxiliary Health Workers of the District Hospital have been sensitized about palliative care under the NHM project.
The Chandigarh Hospice and Palliative Care Service is an authorized training centre for the General Duty Assistant (GDA) course under the Pradhan Mantri Kaushal Vikas Yojana, State component scheme. Students educated until 10th or 12th grades are trained in general patient care and also sensitized to deliver palliative care under this program. Upon successful completion of this training, these individuals are employed by various agencies to render patient care guided by the principles of palliative care for patients in their homes.
Current Challenges towards implementing PC within the state
The uninterrupted supply of funds and the limitation in other resources hinders the further expansion of services.
Future Plans to expand PC throughout the state
Team work coupled with participation from the community has been the hallmark of the service. Models here are unique as the cancer treating departments practice early integration of palliative care into cancer care.
Chandigarh hopes to extend palliative care to non-cancer patients as well with the aim of ‘Leave no one behind - equity in access to palliative care’.
About the Author: Dr. Minni Arora is the Medical Officer In-charge at the Chandigarh Hospice and Palliative Care Service. Dr Arora has been providing care to advanced cancer patients for the past two decades and strongly believe that, “If you have the power to make someone happy, Do it… The world needs more of it”.
Background / Context
Delhi’s estimated population of 3.11 crores reports an average of 20,032 new cancer patients per year1 between the 0-74 age group, of which approx. 16,000 new patients need palliative care per year. In 2019, Delhi reported 32,1302 persons to be living with HIV/AIDS (PLHAs) and registered for care at ART centres in Delhi. In addition to this, there are a huge number of patients with other chronic diseases and elderly in Delhi who need palliative care services. The elderly with poor health contribute to 38% of Delhi’s total population (2017-18)3, with a projection of 19,04,000 people contributing to Delhi’s elderly population in 2021.4
The concept of Palliative Care is very limited in Delhi with only a few hospitals and NGOs providing Palliative Care in the State. The Department of Onco Anesthesia and Palliative Medicine at the All India Institute of Medical Sciences (AIIMS), New Delhi, provides clinical care and training in Palliative Care and also contributes to the field of research under the able guidance of Dr Sushma Bhatnagar. The department provides OP and IP Care to an average of over 10,000patients per year and is the second institute in India to begin offering MD in Palliative Medicine.
CanSupport and Shanti Avedana Sadan, the two pioneering NGOs began provisioning palliative care services in the State two decades ago.
Shanti Avedna Sadan was India’s first hospice and was started by Dr LJ DeSouza in Mumbai. They opened their branch in Delhi in 1995 and have been providing free hospice care to patients since then.
CanSupport was founded by Ms Harmala Gupta, a cancer survivor, in November 1996 to offer support and information to people distressed by the diagnosis of cancer. Cansupport now provisions service thorough their 17 home care units and OP services.
Current providers of palliative care in the State include the Department of Onco Anaesthesia and Palliative Medicine, IRCH, AIIMS (OP and IP), CanSupport (17 home care units providing Home-based palliative care and OP services through its clinics and mobile vans), Cankids (OP & IP services for children), DNIpCare (OP and home based services), Shalom (IP care for patients with HIV/AIDS, terminal cancer, and other non-communicable diseases in addition to providing care to the poor, marginalized and members of LGTBI community), Global Cancer Concern India, Army Base Hospital, Safdurjung Hospital, Delhi Cancer Institute, the Max Hospital Saket, Max Hospital Vaishali, RGCI, Sir Ganga Ram Hospital, Manipal Hospital Dwarka and the Dharamshila Hospital.
Palliative Care Policy:
Despite Delhi not having a State palliative care policy, palliative care services are available in all of Delhi’s 11 districts.
Drug Availability:
The amended NDPS Act has been implemented in Delhi.
Mophine is available in all the government hospitals provisioning palliative care services. Oral morphine and methadone are available at IRCH, AIIMS.
Morphine is available at NGOs (CanSupport, Cankids, Shalom) and at private hospitals (Max Hospital Saket, RGCI, Sir Ganga Ram Hospital, Manipal Hospital Dwarka, and Dharamshila Hospital).
Strong Opioids are available from retailers through the DD12 form- which includes Oral/parenteral morphine, and Fentanyl TD Patch. The other strong Opioids available through prescription are Oral tapentadol, and Buprenorphine TD Patch.
Education: Training and Awareness
The Department of Onco Anaesthesia and Palliative Medicine at AIIMS New Delhi offers MD in Palliative Medicine.
The IAPC’s CCEPC course is available at AIIMS New Delhi, Max Saket, Max Vaishali and Dharmasila Hospital.
The DNB in Palliative Medicine program will begin at Max Saket and Sir Ganga Ram Hospital in the current academic year.
CanSupport In collaboration with the Dept. of Pain and Palliative Care AIIMS, organized an Annual Foundation Course in Palliative Care in 2019, in which125 participants were trained.
CanSupport also offers a One month certificate course in palliative medicine and palliative nursing, a two months certificate course in Palliative Care Counselling for counselors and a 2 day palliative care workshop for nursing students from various nursing colleges.
CanSupport and IRCH AIIMS are also designated centres for hands on training for candidates pursuing a National Fellowship in Palliative Medicine and Nursing.
RGCI offers a 3 day palliative care workshop every quarter to sensitize medical personnel in palliative care
CanKids regularly offers conferences and workshops in pediatric palliative care
Manipal Hospital offers workshops for palliative care sensitization
DNip Care organizes awareness programs for volunteers and online webinars for nurses.
AIIMS, New Delhi, offers regular seminars, journal clubs and workshops.
Current Challenges towards implementing PC within the state
- The community’s lack of awareness of palliative care and its benefits, Lack of knowledge on prescribing opioids for pain management among medical professionals
- Myths about palliative care among health professionals (PC= End of Life Care)
- Myths about morphine and fears of addiction among medical fraternity and general community
- Unavailability of non-cancer palliative care services except at AIIMS, New Delhi.
Future Plans to expand PC throughout the state
Efforts are ongoing to have a State Palliative Care Policy. Necessary steps are also being taken towards integrating palliative care into the continuum of care and integrate it into the UG/PG teaching programs.
About the Author: Dr. Reena Sharma is the Medical Director at CanSupport, New Delhi where she has been working since 2009. She has completed her MSc in Palliative Medicine from Cardiff University, UK.
References for Statistics
- Mathur P et al. Cancer statistics 2020: Report from National Cancer Registery Programme, India. JCO Glob Oncol. 2020;6:1063-1075
- Delhi State AIDS Control Society. HIV/AIDS scenario in Delhi. http://web.delhi.gov.in/wps/wcm/connect/doit_dsacs/DSACS/Home/HIV+-+AIDS+Scenario/
- Choudhary A, Ranjan JK, Asthana HS. Prevalence of dementia in India: A systemic review and meta-analysis. Ind J Pub Heal. 2021; 65(2): 152-58
- NSO (2021), Elderly in India, National Statistical Office, Ministry of Statistics & Programme Implementation, Government of India, New Delhi.
Background / Context
The population at Haryana in 2020-2021 is approx. 27,388,008.
Palliative Care services in Haryana began at the SHKM Government Medical College (SHKM GMC), Nuh, in February 2019, with a palliative care team of Doctors and Nurses beginning to provide cancer pain management, opioid administration, interventional procedures and with counseling services.
Palliative care services in the State are currently being provided at the Pandit Bhagwat Dayal Sharma Post Graduate Institute of Medical Sciences (Pt BD Sharma PGI) Rohtak, the Khanpur Medical College, the SHKM Government Medical College, the Artemis Hospital Gurgaon and at the Fortis Hospital, Gurgaon. Additionally, a few private institutions in Ambala also provide palliative care services.
Besides this, palliative care is also available within the primary, secondary and district levels of the State’s public health care system.
Policy
Haryana currently does not have a palliative care policy in place. However, with support from the State Government, the National Program for Palliative Care is being implemented in the State. OPD palliative care services are available in all of Haryana’s 22 districts and IP services are available in 4 districts.
Drugs Availability
The pain clinic of SHKM GMC provides pain management services for cancer patients by practising the WHO step-ladder pattern of pain management. Most drugs such including Morphine (Parenteral & Oral), Fentanyl (injectable and transdermal patch),Tramadol (Parenteral & Oral), Paracetamol, Ibuprofen, Diclofence etc. are currently available at the center. Other important medications for supportive care including TCA, antibiotics, psychotropic drugs, bronchodilators, anti emetics, proton pump inhibitors, anti allergic etc. are also available.
The availability of Narcotics at the district level needs to be however improved.
Education: Training and Awareness
The State government has trained an approx. of 7 health professionals from each district to provision palliative care services.
42 Nurses and 100 MBBS Undergraduate students at SHKM GMC, have been sensitized towards palliative care in September 2018. Nurses were sensitized in wound management, bed sore management and providing oral care for terminally ill patients, while the 100 Under Graduate students were introduced to palliative care and sensitized in pain management and opioid prescription.
Current Challenges towards implementing PC within the state
- Limited number of palliative care trained professionals
- Limited awareness about palliative care among health care professionals
Future Plans to expand PC throughout the state
The State plans to expand the provision of palliative care services by organizing pain camps at the District level and at the PHCs and CHCs by actively involving the preventive medicine health cadre.
About the Author: Dr. Depinder Kaur is an Anesthetist, a pain physician and palliative care physician. Her experience during the pandemic has convinced her to share her knowledge, time and skills towards the upliftment of the essential palliative care services in Haryana.
Background / Context
What can be called as one of the earliest efforts to provide palliative care in Himachal Pradesh, was when Dr. Rakesh Sharma, a pediatrician at IGMC Shimla, earned a fellowship in pediatric palliative care (2015) from the University of Minneapolis. Currently, Dr Vinay Somya is the lone palliative care physician working at the palliative care unit at IGMC Shimla.
The population of Himachal Pradesh is 68,64,602 (census 2011).1 A literature search did not reveal the need assessment for palliative care in Himachal Pradesh. However the incidence and prevalence of those diseases which have a high need for palliative care, can be used as a surrogate to represent the palliative care needs of the state.
Himachal Pradesh registers around 3000 new cancer cases per year2, and in addition several patients in the border districts choosing to undergo treatment at Chandigarh. The rate of diagnosed cancer is one of the highest among all states, with a high crude incidence rate of 91.6.3
Self-reported prevalence of diagnosed cancer is the highest in Himachal Pradesh. (2.2). The prevalence of moderate COPD among the population of age 60+ is as high as 10% which is only 2nd to Puducherry.4 The 2011 Census data reveals that 2.26 % of Himachal’s population have some form of disability.1
Policy
The guidelines and directions of the Central Government are being followed to provide palliative care in Himachal Pradesh. The state of Himachal Pradesh has 12 districts. The State currently does not have a State Palliative Care policy in place. Indoor palliative care services are available at IGMC Shimla.
Currently, there are no NGOs working within the State to provide palliative care services. Provisioning home care services seems to be a daunting task due to scattered population, hilly terrain and limited vehicular access to most houses.
Drugs Availability
12 Nirog Centres have been identified at various regional or zonal hospitals for dispensing morphine, of which 8 are functional (Bilaspur, Chamba, Dharamshala/tanda, Kullu Mandi, Rampur, Solan and Una).5Additionally, three medical colleges at Shimla, Tanda and Ner Chowk dispense Morphine.
Use of Essential narcotic drugs other than morphine is not common.
Education: Training and Awareness
It is promising to note that the administrative decision makers are aware of the need for palliative medicine and have therefore begun creating the posts of palliative medicine physicians in medical colleges. Also palliative care units are being integrated with some identified Nirog centers.
The current unavailability of training courses within the State, does not seem to dampen the spirits of the officials and they chose to send their health care professionals to other states to get trained in the delivery of palliative care. An approximately 20 physicians have been trained in palliative medicine, and are providing their services despite of difficulties.
IEC services for patient and caregiver about palliative care are picking up pace.
Current Challenges towards implementing PC within the state
- Formulation of a State policy to improve access to palliative care services which need to account for the geographical and demographical profile of the state
- The need to speed up the process of infrastructure development and training of physicians.
- The absence of a comprehensive research about need assessment for palliative care services to facilitate the strategizing of palliative care service delivery.
- Building palliative care teams for total patient care.
Future Plans to expand PC throughout the state
The Government of Himachal Pradesh is working towards making morphine available at 4 new Nirog Centres at Recong Peo, Nahan, Rohru and Hamirpur.
The medical colleges are also working towards establishing palliative care units at their respective centers.
About the Author: Dr. Rajan Negi is a Pharmacologist with 16 years of primary health care background. He is currently pursuing the National Fellowship in Palliative Medicine (NFPM) from the Institute of Palliative Medicine, a WHO Collaborating Center at Kozhikode, Kerala.
Background / Context
Jammu and Kashmir is a landlocked geographical entity located at a very high altitude with a multi-ethnical 13.6 million population (census 2020) and unique cultural practices. It has been traditionally considered as an endemic cancer zone with a peculiar cancer profile. Jammu and Kashmir has recorded 39,041 cancer cases between 2019 and 2021.
Palliative care in Kashmir was initiated in 2015, at the Department of Radiotherapy, in the Sher I Kashmir Institute of Medical Sciences (SKIMS) under the SKIMS palliative care programme to alleviate the sufferings of cancer patients, by taking palliative care to the patient’s door step. Home care services are provided twice a week, in addition to the hospital based palliative care services.
The Government Medical College Srinagar, began providing palliative care services from 2016, due to the initiative of an individual. This initiative gained momentum in 2019, when a team under the guidance of Drs Sushma Bhatnagar and Cynthia Goh offered the CTC3 program. Doctors and nurses from Jammu and Kashmir, were for the first time trained in palliative care and certified the center as a ‘PALLIATIVE CARE CENTER’.
Palliative care services are also available at the Government Gandhinagar Hospital, Jammu and at the Government Medical College, Jammu.
Currently no NGO’s or private care providers provision palliative care services in Jammu and Kashmir.
Policy
There is no palliative care policy in Jammu and Kashmir.
However, the pandemic has deterred the active implementation of the National Program for Palliative Care despite funds being released for the same.
The implementation of the CTC 3 and CTC 4 enabled palliative care service provision at the Government Medical College Srinagar, the Government Gandhinagar Hospital Jammu and at the Government Medical College, Jammu.
Drugs Availability
Opiods are available in Jammu and Kashmir, due to the successful implementation of the NDPS Act 2014 in 2018.
Education: Training and Awareness
The Cancer Training Program (CTC) program has trained doctors and nurses to deliver palliative care in Jammu and Kashmir.
Programs to sensitize the general community about Palliative Care began in 2019, which have unfortunately been halted due to the COVID 19 Pandemic.
Current Challenges towards implementing PC within the state
- Inadequate implementation of the NPPC
- The lack of awareness about palliative care in the community
- The stalling of the sensitization programs in the community due to the pandemic
- The lack of a population and hospital based cancer registry
Future Plans to expand PC throughout the state
Engage with Government officials to actively implement the NPPC to expand palliative care throughout the state by providing district wise palliative care training for doctors, nurses, social workers and volunteers. This will empower and promote behavior changes among these health professionals to deliver palliative care services within the Government health programs.
We intend to work towards getting palliative care included into the educational curriculum of medical, nursing, pharmacy and social workers’ as a step to address the attitudinal issues among the budding health care professionals towards palliative care.
Continue to sensitize, advocate and engage with the relevant Government officials for the effective implementation of the NPPC.
About the Author: Dr. Arshi Taj is an Associate Professor, Department of Anaesthesia, Critical Care and Pain Management at the Government Medical College, Srinagar. Dr. Taj has completed her MD Anaesthesia, and a Fellowship in Palliative Medicine (NFPM) from IPM, Kerala. She has also completed her Fellowship in Pain Management from Delhi and Observership in pain and palliative medicine from Tata Memorial Hospital Mumbai and Gujarat Cancer Research Institute. Ms. Taj is on the Editorial board of the Indian Journal of Pain and has authored an article in eHosice, India Edition, titled ‘My Journey’. She resonates with the beautiful quote, “The woods are lovely dark and deep, but I have promises to keep and miles to go before I sleep… and miles to go before I sleep.”
Background / Context
Ladakh was established as a Union Territory of India in October, 2019. Ladakh is the largest and the second least populous union territory of India. The largest town in Ladakh is Leh, followed by Kargil, each of which headquarters a district. The estimated population of Ladakh as of 2021, is 2.97 Lakhs.
Palliative Care in Ladakh began as an initiative of Mr. Sunil Chauhan, a social entrepreneur and an activist. Mr Chauhan had visited Ladakh several times in the past few years with the mission of starting palliative services in Ladakh. He introduced us, motivated us and inspired us to work in the field of palliative care. He was also instrumental in the establishing our group and in organizing training programs for us. The Palliative Care group of Leh, currently has 13 active members including two doctors, one physiotherapist, one counsellor, one clinical psychologist and seven volunteers, who conduct scheduled home visits to chronic and terminally ill patients.
About 30 patients are currently listed in our palliative care services. Our volunteers cover the areas from Leh to Choglamsar, which is an area, not systematically covered by the healthcare system and help with medical checks and treatment, diet, bedsore care, catheter changes, changing feeding tubes, physiotherapy, councelling, social support, preparing and training attendants for routine home care and handling our patients’ legal and ethical matters.
We also have a sister organization, the Medical Social Service Association, which provides other services such as conducting medical camps, taking care of referrals to higher centres like AIIMS and other hospitals etc. The volunteers of this organization are very enthusiastic about palliative care and also had a seminal role in the launch of our palliative care services. Some of our members are active members of this society.
Policy
At the moment, Ladakh does not have any palliative care policy.
Our small yet dedicated team of physicians, paramedics, physiotherapists, counselors and volunteers provide palliative care services in Ladakh.
Drugs Availability
It is challenging to easily access medication like morphine, due to its strict restrictions.
Education: Training and Awareness
The team members from the palliative care group of Leh have been trained at the Institute of Palliative Medicine, Kerala in 2016.
Current Challenges towards implementing PC within the state
- Difficulty in easily accessing medication like morphine
- The lack of awareness and motivation among the medical and the paramedical personnel about palliative care
Future Plans to expand PC throughout the state
Though our activities have been delayed due to the pandemic, we are determined to increase the pace of our activities with support from volunteers. We intend to generate awareness about palliative care within the community and continue to provide services to our patients. We hope to do this by roping in and training more volunteers so that they are empowered to provide care for patients in their allotted areas. We plan to get these volunteers trained at the Institute of Palliative Medicine, Kerala.
In the meantime, we have conceived a major project that will provide several services such as Drug and Alcohol De-addiction, Mental Hospital, Palliative Care, a Hospice, Home for Destitute, Old Age Home and a centre for Cancer Research. The project will be executed by the Medical Social Service Association, of which Palliative care is an important department. The proposal for the same has been submitted to the Local Government for consideration, and we hope that a piece of land will soon be allotted for the establishment of this centre.
The Government has also planned to establish a Medical College at Leh in the near future, which may provide palliative services to cover both the Leh and Kargil districts in future. This project may take five years to kick start, and when it does, we plan to synergise our activities with them.
About the Author: Dr. Tashi Thinlas is a consultant physician at the Government Sonam Norboo Memorial Hospital, Leh. He is also working with several societies which are active in the field of health and social welfare which include Medical Social Service Association, Ladakh Vipassana Centre, Rogs Society and Rotary International. He is one of the founding members of the palliative care movement in Ladakh.
Background / Context
The Government of Punjab, began the Palliative Cancer Care program as a pilot project in 2016.
The project began in the Patiala district and has unfortunately hit roadblocks due to lack of adequate monitoring.
CanSupport, an NGO, was also actively involved in the project during inception.
The major palliative care providers in the State include Can support, Christian Medical College (CMC) and Dayanand Medical College and Hospital (DMC), Ludhiana, and the Sri Guru Ram Dass Charitable Hospital (SGRD), Amritsar.
Policy
The State of Punjab currently does not have a State Palliative Care Policy.
Drugs Availability
Morphine is currently provided by CanSupport in the State. However, opioids are not easily available across the State due to the Drug Addiction problem in Punjab.
Various teams have begun to create awareness among health care professionals and Drug Inspectors to increase the accessibility for opioids for those patients who need such drugs.
The lack of awareness among the Govt. officials and doctors is the other deterrent towards improving the availability of these drugs for patients.
Education: Training and Awareness
Training programs in Punjab are offered by the Institute of Palliative Medicine, the Indian Association of Palliative Care and the NAPCAIM, Punjab Chapter at SGRD University of Health Sciences through ongoing webinars by CanSupport in collaboration with Sri Guru Ram Das University Of Health Sciences, for the medical and paramedical faculty of the SGRDUHS, Amritsar, Punjab.
The State Government does not currently offer any training programs.
Additionally, Sri Guru Ram Das University of Health Sciences (SGRDUHS) Amritsar under NAPCAIM has begun delivering courses to generate awareness among both the health care professionals and the community.
From 8 October, 2021, Sri Guru Ram Das University of Health Sciences is going to begin providing Home Based palliative care services at the Rural Health and Training Centre attached to Department of Community Medicine, SGRD Hospital, in village Mallunangal.
Current Challenges towards implementing PC within the state
- Limitations towards making opiods easily accessible due to the drug addiction problem
- Lack of awareness about palliative care among health care providers
- Limited motivation from the State Government officials, the health care professionals and the community to uptake palliative care
- The absence of training initiatives from the Government sector
Future Plans to expand PC throughout the state
The SGRDUHS is planning to begun provisioning home based palliative care services under the NAPCAIM Punjab Chapter from October 2021, at RHTC where 11 villages have been adopted to cover a total population of 32,756.
About the Author: Dr. Harjot Singh is the Associate Professor, Community Medicine and a Local Faculty for palliative care courses at SGRDIMSAR, Amritsar. He has completed his International Fellowship in Palliative Care from WHOCC and is also the State Secretary of NAPCAIM.
Background / Context
Uttar Pradesh is one of India’s largest States, with a population of approx. 24 crores. It is reported that approx. 44% of this 24 crore population contributes to the State’s total cancer population. The most commonly reported cancers in UP are Oral cavity cancer, Lung cancer, breast cancer and Gall Bladder Cancer.
According to WHO, in 2014, there were 1,86,638 cancer patients in the State and there were 82,121 cancer deaths during the same period. Thus, there is a dire need for palliative care services in the State.
Palliative care services in the State began in Lucknow in 2003, when Dr. Abhishek Shukla set up the Astha Hospice Center, which aimed to provision geriatric care and palliative care for cancer patients.
The State Government of Uttar Pradesh initially began provisioning pain clinic to relieve cancer as well as non cancer pain in three Government Institutes. It was then that they recognized the increasing prevalence of terminally ill patients and the subsequent huge demand for palliative care services.
In light of this, the Sanjay Gandhi Post Graduate Institute of Medical Sciences (SGPGI), Lucknow, began offering palliative care services by allocating 20 beds for palliative center, under the able guidance of Prof. Anil Agrawal (Head of the Department of Anesthesiology) and Dr. Sanjay Dhiraaj.
By 2018, The King George’s Medical University, which caters to a huge number of cancer patients also began offering palliative care services by allocating 10 beds for palliative care patients with support from the administration and under the able guidance from Dr Sarita Singh, the palliative unit In-charge.
The Institute of Medical Sciences - BHU is also providing palliative care services with a 5 bedded ward. Dr. Anil Pashwan and Dr Nimisha are the In-charge the palliative unit.
The Harriet Benson Memorial Hospital, Lalitpur, was the first team under the Emmanuel Hospital Association (EHA) to provision palliative care services by developing its own policy towards provisioning palliative care. Services provided include home care services, OPD and IPD services despite the absence of a dedicated unit. Though Morphine is available at the center, Interventional treatment is currently unavailable at the center.
The Broadwell Christian Hospital, Fatehpur also offers palliative care services in association with the Emmanuel Hospital Association, Lalitpur. Services offered here include home care services, OPD and IPD services without a dedicated unit. This center also provides morphine but not Interventional treatment.
Policy
Uttar Pradesh currently does not have a State Palliative Care policy, however the NPPC guidelines are being followed within the State
The State Government is however taking initiatives to provide palliative care services to the elderly through integrating palliative care within the Ayushman Bharat Yojana. This integration has resulted in the training of the 1st grade Doctors working in Medical colleges. These doctors are being trained by the NHRC, Govt. of India, to become master trainers and subsequently train the Medical Officers, the Community Health Officers , the ASHA’s and the ANM’s to provision palliative care at the grassroot level.
Palliative care services or hospice services are however not yet fully available in Uttar Pradesh’s 75 districts.
Drugs Availability
Morphine tablets are freely available in Lucknow at the King George’s Medical University, the Sanjay Gandhi Post Graduate Institute of Medical Science (SGPGI) and at the Harriet Benson Memorial Hospital, Lalitpur.
Education: Training and Awareness
The health care professionals from the Primary Health Care centers (PHC) and Community Health Care center (CHC) are being trained in palliative care under the Ayushman Bharat Yojana to provision services at the grassroot levels.
These professionals also conduct sensitization programs with the patients’ family members and the general community.
The IAPC’s CCEPC course is offered in 3 Centres in UP, at SGPGI, at King George’s Medical University and at the Harriet Benson Memorial Hospital, Lalitpur.
The ELNEC Training Program has been conducted at King George’s Medical University, Lucknow.
Current Challenges towards implementing PC within the state
- The lack of awareness regarding palliative care among health professionals and among the general community resulting in the limited uptake of palliative care services due to myths.
- The limited opportunities for training and education in palliative care
- The lack of adequately trained palliative care professionals at the Government institutions
- The late referral of those patients in need of palliative care to practioners of palliative care
Future Plans to expand PC throughout the state
Palliative care in Uttar Pradesh is still at its nascent stages. Future efforts will be directed towards motivating people to uptake palliative care, upscaling education and training programs and to continue engaging with and encouraging State Government officials to continue the active implementation of Palliative care within the State.
About the Author: Dr. Sarita SiNgh is the Professor, Department of Anesthesiology and In-charge, Pain and Palliative Medicine Unit at the King George’s Medical University. Dr Singh firmly believes that palliative care is the need of the hour as helps to relive the intractable suffering of patients and that every individual is entitled to live and die peacefully. She wishes for a pain free India and that ‘together everyone achieves more’ as ‘Life should not be long, it should be big!!’
Background / Context
Uttarakhand is a small State in the northern part of India with a population of 10,086,292. 86% of the State is mountainous and 65% of the State is covered by forest area. Most of the State’s northern part is covered by the Himalayan peaks and glaciers. The geography of the State is therefore a barrier in itself to deliver health care services in the remote regions. The state reports an average of 15,000 new cancer cases every year. At the moment, there is a lack of available data to assess the palliative care needs of the patients in the State.
Palliative care services in Uttarakhand were initiated at Swami Rama Himalayan Medical University, Dehradun and Rotary Club about 6 years ago. Over the years, a few more institutions from across the State have begun provisioning palliative care services to those needing such services.
AIIMS, Rishikesh in Dehradun District, The Ganga Prem Hospice Rishikesh Dehradun, The Jollygrant Hospital Dehradun, The Sushila Tiwari Hospital Almora are the institutions provisioning palliative care.
The Ganga Prem Hospice, established in 2017, is a well established hospice in Uttarakhand to provide hospice and home based palliative care for patients from all over North India.
Policy
The State of Uttarakhand currently does not have a State Palliative Care policy. However, the Government of Uttarakhand has begin implementing the Palliative Care Program in 2019 with a primary program orientation, under the umbrella of the National Program for Palliative Care (NPPC). Four (Dehradun, Haridwar, Almora, Tehri) of the State’s thirteen districts provide palliative care services.
Drugs Availability
Morphine and Tramadol tablets are available at all the centers mentioned above.
Buprenorphine and fentanyl patches are available at AIIMS Rishikesh and Jollygrant Hospital.
Education: Training and Awareness
AIIMS Rishikesh, began offering the IAPC’s Certificate Course in Essential of Palliative Care (CCEPC) since November 2018. Over the past 3 years, 65 physicians and staff nurses from the State have been trained in palliative care through this program.
Virtual training programs offered by NGOs also help train health care professionals and volunteers in palliative care.
An approx. of 30 Doctors and Staff Nurses currently working in the Government hospitals of the State are trained to provision palliative care. These trained professionals are available to provide OP/IPD and home care facilities and procure essential narcotics for these centers
Current Challenges towards implementing PC within the state
- The Geographical terrain of Uttarakhand presents itself as a challenge to deliver services and ensure the availability of Narcotics across the remote and hilly terrain of the State
- The lack of awareness regarding palliative care among the general community
- Limited awareness regarding palliative care among the practicing physicians
Future Plans to expand PC throughout the state
Establish palliative care centers in the Government Hospital where staff have been trained in palliative care.
Organize and conduct refresher training for the recently trained staff.
Organise and provide sensitization programs for the Chief Medical Officers from all the districts in Uttarakhand.
Increase the demand for palliative care services by generating awareness about palliative care among the general community.
About the Author: Dr. Mahendra Singh is an Associate Professor in the Department of Community and Family Medicine at AIIMS Rishikesh. Dr Singh is also the course coordinator for the IAPC’s Certificate Course in Essentials of Palliative Care offered at AIIMS Rishikesh.