Case study

We met Rani on a ward round at the Indian regional cancer centre during our Hamrahi week-long visit. Rani was a 54-year-old woman with widespread inoperable bowel cancer. She had been admitted several days prior with severe abdominal pain and was still very distressed, in terrible pain and vomiting uncontrollably, unable to tolerate anything orally. Her husband, who was with her in the hospital, was feeling helpless and was crying during the ward round. With the hospital team, we were able to conduct a quick but comprehensive assessment that confirmed a bowel obstruction. The team had not previously examined Rani and we encouraged them to do an ongoing assessment and try to identify precipitating or contributing factors that might be reversible. We explained to Rani, her family, and her doctors, that she needed to be temporarily nil by mouth, and what medications might be used to treat her bowel obstruction. We were able to teach the hospital staff how to manage a malignant bowel obstruction using subcutaneous fluids rather than intravenous, which was difficult to maintain in that setting. Under our guidance, the team also started an infusion of subcutaneous medications. By the end of the consultation, Rani’s husband expressed profound gratitude for the concern and care his wife was now receiving from the team. The next day, Rani had improved significantly. She was able to speak clearly to the team and her vomiting had stopped. She was tolerating small amounts of water and her abdominal pain was relieved.

UNFORTUNATELY, this scenario of unnecessary suffering due to a lack of knowledge and skills in palliative care happens often in many parts of India and in low-and-middle-income countries (LMIC) across the world. Many health professionals have not been exposed to palliative care training and fail to recognise their potential ability to alleviate the suffering of patients such as Rani. While these situations also occur in high-income countries, they are much more common in the LMIC setting globally.

Only 14% of the global population has access to fully integrated palliative care. Each year, an estimated 40 million people worldwide need palliative care, of whom 78% reside in LMIC. In India, where palliative care began about 30 years ago, an estimated 5.4 million people need palliative care, but less than 1% can access it.

APLI was established as a non-government organisation in 1996 and is registered as a charity in Australia. APLI aims to raise awareness of palliative care through teaching, advocacy, mentoring and supporting palliative care health care professionals in LMIC in the Asia Pacific region.

APLI mentors are Australian and New Zealand healthcare providers from all disciplines who volunteer their time, energy, and expertise to work alongside colleagues in palliative care services across the Asia-Pacific. In India, services are identified by Pallium India, a World Health Organization Collaborating Centre for Policy and Training on Access to Pain Relief based in Trivandrum, Kerala. Pallium India aims to catalyse the development of effective pain relief and quality palliative care services and their integration in health care across India through the delivery of services, education, building capacity, policy, research, advocacy, and information. Many Indian nationals have completed their palliative care foundation courses and are supported in their development by Pallium India’s regional coordinators.

APLI and Pallium India established Project Hamrahi (Fellow Traveller) in 2010 to foster links between palliative care doctor/nurse teams from Australia and new teams in India. It aims to support the development of fledgling palliative care services in India. Volunteers are given the opportunity to work in a different culture and better understand the challenges faced by colleagues in those countries. It strengthens regional relationships and enriches practice in both linked countries.

Prior to the COVID-19 pandemic, APLI mentors would make annual in-country visits to participating sites, accompanied by Pallium India regional coordinators whenever possible. Given international border restrictions, and in response to our evaluation of Project Hamrahi in 2020, our most recent efforts have turned to the use of the ECHO® (Extension for Community Healthcare Outcomes) model to continue the Hamrahi connection and create an Australia-India community of palliative care practice. Hamrahi participants requested more frequent interactions and identified education topics of importance to their day-to-day practice. ECHO Hamrahi began in December 2021 and conducts monthly 90-minute ECHO sessions; the format is an opening presentation on a requested topic, delivered by either an Australian or Indian practitioner, followed by a case or service presentation from an Indian service and one from an Australian mentor/team. The most recent sessions focused on Opioid Availability in India, Falls and Frailty, and Quality Improvement in Palliative Care.

As fellow palliative care physicians, we urge you to consider making a difference in the world of palliative care today. Even though we see gaps in service provision in Australia and New Zealand, we enjoy much better access than most of our near neighbours in the Pacific andbeyond.

Please consider supporting the work of APLI and ECHO Hamrahi through donations, becoming an APLI member, or even by volunteering to be a virtual presenter or participant in one of the ECHO Hamrahi sessions. All levels of experience are welcome as the group is run by a multidisciplinary team of volunteers. Your donation and membership fees received are used to support projects such as ECHO and are tax deductible.

Cachar Cancer Centre continues to be one of the most active sites attending the ECHO Hamrahi program. This time, it looked like the entire nursing team was present, alongside Sarita Chhetri, showing the great support for palliative care development at Cachar!

Following an excellent introductory lecture by Ms Rachel Coghlan, physiotherapist, we moved to hear about two cases which illustrated the importance of assessing frailty and risk of falls in this patient population.

Dr Priyanshu, physiotherapist from Homi Babha, supported by team psychologist and Dr Vidya, discussed the management of an 81-year-old woman with metastatic SCC oesophagus and breast cancer, presenting with multiple symptoms of dysphagia, breathlessness, fatigue and restricted mobility. Her palliative performance scale was 60%. She was increasingly dependent on her son and daughter-in-law for care, with some tensions arising in these relationships as a result. The team discussed her symptom management and the psycho-social care provided by team psychologist and others, to the patient and her caregivers. They presented a comprehensive care plan which summarised the interventions on the psychical, psychological, practical, anticipatory and decision-making domains.

There was active discussion about the types and value of various frailty assessment tools, and their integration into routine clinical care.

The second case presentation was led by Sarah Begley, palliative care clinical nurse consultant in Melbourne, with reflections on management of frailty from Joan Ryan, CNC Sydney, and Rachel Coghlan. Each discussed this from the perspective of a community care setting (Sarah), hospital consultancy (Joan) and from the physiotherapist perspective (Rachel). An interesting point was the judgement required to achieve an acceptable balance between safety and mobility risk reduction, and the patient’s goals and quality of life, which often involves some risk-taking.

There were 22 participants, many from Pallium India team of regional coordinators across India.

After a review of the 2014 Amended NDPS law and related 2015 rules by Dr Rajagopal, there was discussion about why there were still so many districts across India which were still following the pre-2014 NDPS rules, despite it now being against the law to do so. Clinicians shared their struggles to obtain oral morphine for patients to continue outside the institutional walls and the push-back they encountered from regulatory authorities and, sadly, from colleagues who were poorly informed about safe opioid prescribing and management of severe cancer pain.

All three regional presenters were working in Registered Medical Institutions (RMIs) which were providing a continuous supply of oral and injectable opioids for their patients. Cachar Cancer Centre has had not interruption in supply for over three years. Thanal Lakshadweep has been established as an RMI since 2013 and is working to obtain direct supply of opioids rather than having to order via Kerala with all the resulting delays, often over three months. Advice was to order much longer supply to avoid stockouts and shortages, while also working toward establishing a more reliable supply chain.

For Bihar, we were all disturbed to hear that there are only two out of the 38 districts with RMIs and so the capacity to ensure that a supply of oral opioids is available to their patients. This translates to an enormous burden of unrelieved suffering. The population of Bihar is estimated at 127 million by 2020, the third largest state by population in India. The major care providers for palliative care are centered in Patna at Indira Gandhi Institute of Medical Sciences (IGIMS), Mahavir Cancer Sansthan, AIIMS Patna,  and the Homi Bhabha Cancer Hospital and Research centre (HBCHRC), Muzaffarpur.

Many institutions are still operating according to the pre 2014 Amended NDPS, effectively operating against the law in doing so. This was disappointing. I was personally present at a state-wide workshop held at IGIMS in 2018, co-conducted by the Pallium India, with Dr Rajagopal as keynote speaker. This was attended by the State of Bihar Drug Controller and clinicians from many hospitals in Patna and beyond. The change in the national law was clearly laid out and its implementation discussed in detail. However, despite the passage of 3 years, the situation remains largely unchanged with only four RMIs across the entire state.

However, Dr Rita Rani’s presentation on the progress at Mahavir Cancer Sansthan inspired us all. As well as establishing a palliative care team, ward, outpatient clinic and emergency palliative care area, MCS is working toward opening a large hospice centre, with 100 beds, to cater to the needs of the many patients who present with advanced, incurable cancer to that institution. This would be a very significant addition to the care of patients with cancer in Bihar. They have also run many IAPC sensitization courses for volunteers, and End of life nursing education consortium (ELNEC) course for nurses.

Challenges are many. For example, most doctors avoid prescribing oral morphine for fear of side effects and she estimates that 95% of cancer patients in Bihar have poorly managed pain. Dr Rita shared that many times her patients’ opioid management is ceased by other practitioners who put them back onto tramadol resulting in recurrence of severe pain. However, despite this, oral morphine 10mg tablet use at MCS has more than doubled since 2017, now up to 98254 tablets. So there is great cause for optimism that the care of people with severe cancer pain in Bihar will significantly improve thanks to the work of Dr Rani and her team.