Hello and Namaste once again to everyone attending this ASCO ECO video conference and on behalf of our department, I'm here, I'm Dr. Romila Singh Pongar, I'm going to give a short talk on palliative care in resource limited countries. So as we all know we have two models of care in medicine, one is the disease-directed therapies that aims to cure or control the disease itself and the next approach is the patient-directed approach which is the supportive and palliative care which aims to comfort the patient and palliate the symptoms. And we need to integrate these two models to provide better and more patient-centered care and because there has been palliative care initially was thought to be the care that is to be provided in a person at the end of stage of any chronic or life-threatening illness. Because of that, there has been now several guidelines that recommend integration of palliative care into standard oncological care as recommended by various guidelines like ASCO, ESMO and other guidelines as well. And all of these guidelines were based on different studies and systemic meta-analysis, systematic review that has shown various benefits of integrating palliative care early into standard oncological care for better patient satisfaction, improved quality of life of the patient and also there has been studies that has shown improving even survival as well. And we all know that palliative and supportive care are continuum of care that is like we need to give it right from the diagnosis of disease even after the day and through the process of bereavement and it includes supportive and palliative care as well as hospice care at the end of life. However, like even if palliative care is a basic human right, yet there are significant disparities in the world because the provision of palliative care services within different parts of the world is very variable and there is one end of the world with high income countries where palliative care is easily available and resources are available yet. The standard integration into oncological practice early is still not practiced much whereas the other end there is the low income countries where there are lack of resources like for example be it human resources like manpower, be it financial resources like supply of basic medicines for symptom control and variation of symptoms. So, there is disparities in palliative care in high income versus low income countries. So, what is the value of palliative care provision in those resource settings? So, out of 14 billion people globally in need of palliative care, only about 14% receive it and most of these patients who receive the comprehensive palliative care largely reside in the high income countries and although it is proven to be cost effective in high income countries through the basis principle of cost avoidability, the cost effectiveness of control of palliative services in low income countries is not yet studied. And the critical absence of palliative care services in low income settings result in significant cost mostly being absorbed by the individuals, family and local community and this results in intractable and devastating like shifting of financial losses on to the next generation that results as a catalyst in the poverty cycle, stunning the local economic growth. Yes, this is very important data. Only 14% of those who need worldwide relief are getting palliative care and most of them are in the developed countries. So, in the developed countries very few who deserve, who need palliative care are not getting palliative care. This is very very significant. And in considering the direct, indirect, abnormal societal cost of incurable disease in low source countries, palliative care should be considered as a poverty reduction strategy. So, because of this immense need for incorporating palliative care into the basic healthcare system because since it is a basic human right, in 2014, World Health Assembly passed a resolution appealing to the member countries to incorporate palliative care services into the mainstream healthcare system. And palliative care in resource limited settings should not be limited to specialist palliative care services but should include primary and secondary care levels as well. Again, what is important is that specialists, even a country like Nepal which has 30 million population, so far we do not have a single full time board certified palliative care specialist. So, this primary level, secondary level inclusion is very very important to provide the palliative care services to the majority of people. And there are some obligatory needs to fulfill the palliative care services in resource limited countries, that is access to appropriate health facilities, healthcare should be there and goods, medical supplies and services on a non-discriminatory basis. That is like the health facilities for palliative care should be provided irrespective of where the person lives, even in the resource limited setting. Some people might be living in urban areas, some people might be living in rural areas. So irrespective of anything on a non-discriminatory basis, everybody has a right to basic palliative care services. And there should be provision of essential medicines as defined by the WHO in the essential WHO essential list for symptom control as well as terminal care of the dying patients. And there should be adoption and implementation of a public health strategy which should include palliative care in the national health policies. So there are some essential components for successful palliative care integration in the resource limited setting. And first and foremost, there should be an action plan that captures the vision and outlines in which the nation envisions palliative care. And we should be like every nation has their own needs and their own requirements and their own priorities, but there should be an action plan to envision a palliative care setting as well. And to support that palliative care vision, there should be national policies that should be implemented. There should be palliative care preceptorship, which is a very, very important component of successful palliative care integration because there are, as Saru said, very, very few trained palliative specialists who have completed formal trainings. But through palliative care preceptorship, we can train people at primary and tertiary level and even in community level who can provide palliative services at community level as well. District-wide referral pathway connecting hospitals, clinics, NGOs, and other organizations should be paved. There should be standard protocols to improve the decision-making because in resource limited setting, the palliative care is not always given by the palliative care specialist. So there might be impairment in decision-making because of the knowledge of various community workers or other health care workers. So a standardized protocol will help improve decision-making at all levels. There should be proposed for prescribing, the shared documentation of the medicines, systems, skilled pharmacists, because that especially is important in prescribing opioids to avoid misuse of opioids. And there should be a procurement system that ensures consistent medical availability because this is again one of the very important limitations in resource limited countries. One, the medicines are available but consistent and constant supply of medicines are not very frequent and especially like even availability of morphine may not be very continuous. So this was our situation in Nepal even a few years back. So there should be procurement system that ensures that basic like palliative care medicines and supportive medicines are available. And there should be a governing body or a procurement system that ensures the quality and adaptive changing various palliative care facilities that occurs throughout the process. There also should be partnership. It's a functional network of organization and support system. So it's not there should be government bodies, non-governmental organization, local organization and local community organization. There should be partnership with each other to have a successful implementation of the palliative care at the grassroot level. And there should be availability of spiritual care and support at all levels. That will be like the spiritual care can be varied from country to country according to their own local spiritual care. And lastly the community awareness is a very essential component because the community should be aware of the palliative care services as well as like the taboos regarding the dying patient and especially in oncology like the taboos regarding the cancer and it's like treatment should be, it should be like there should be reduction in like these taboos by community awareness. So we all know that palliative care is a teamwork at all levels which includes physician, family, nurses, religious leaders, physiotherapists, dieticians, psychologists and other, it's a whole teamwork approach. But unfortunately palliative care model in resource limited setting may not be very much like this. Sometimes there has to be role shifting like the role of physicians or family, I'm sorry, physicians or nurses or physiotherapists, dieticians, psychologists, they all have to be like played by a single caregiver, healthcare giver or sometimes even community health volunteers at the grassroot level. So basically the pyramid shows that the vast majority of burden of palliative care occurs in the community by the volunteers or community health workers. And then the second it will be by healthcare providers and lastly only there will be very few specialist care and those patients who cannot be managed in this level, the hierarchy is maintained and they must be referred to a specialist care. So because there is disparity in availability of healthcare services in the high income countries and low income countries, so ASCO has come up with this very good guideline that incorporates the need for palliative care in global setting, the ASCO Resource Stratified Guideline. So basically this guideline also, it also gives us the message that palliative care should be done at community level and because there are less specialists, there needs to be like the nurses and the other paramedical staff needs to be trained for even prescribing morphine at community level but that should be like controlled and there should be some control monitoring system and like palliative care training is a very very important part of this guideline. Training the healthcare professional or even the community health volunteers about the symptom management and management of terminal ill patient is very very important part of management of palliative care in resource limited settings. So apart from that, I think it's the nation, every nation has their own challenges to face and that should be addressed and learning from other nations with similar situation to learn like how can we improve the palliative care services in their own country is very important. Like I'll try to give an example like Panama recently had improvement in palliative care services by building palliative care into its primary care services. Mongolia had like they did increase, they rapidly developed the growth of hospice facilities and teaching programs and Uganda had advances in the availability of opioid medicine. So learning from each other in similar situation is very important for successful integration into our own nation. And like in Kerala, institution based palliative care was not very, like it was not very successful so they started home care services and the local government themselves supported the palliative care services as home based services and that proved to be much more effective than institution based care. So learning from these countries, we need to individualize our own palliative care model. So I'd like to briefly state about the status of palliative care in Nepal. The hospital based palliative care started with establishment of Ombuds unit in the hospital in the year 1991. In 1999, the organization Mighty Nepal established a hospice in Jhapa district to shelter various illnesses including hepatitis, tuberculosis and HIV AIDS. And the formal organization of Japanese Association of Palliative Care was established in the year 2009. Before 2005, morphine was not even available, like not available regularly in Nepal. And with the hardship of Professor Dr. Vishnu sir and the other stakeholders, morphine was, oral morphine production was started in Nepal in 2009. So now we have in-house supply of morphine. We have all form of morphine produced in Nepal now. It's a syrup, tablet, substance release tablet, immediate release tablet and then injection. Nepal is one of the few developing countries where all form of morphine is easily available now. And just to show the very, like for the hospice, as a part of hospice, the first hospice that was established is in our like Pashupati temple. This is one of the most respected, respectful temple of our country. So we have a hospice here within the premises of this temple as well, which was established formally in 1993, but it was presented earlier as well. And this is a picture of Hospice Nepal, which was established in 2000, really. Shetland Hospice in 2004. Now we have like a lot of hospices being established, like in Bibi Udala Memorial Cancer Hospital, it was established in 2005. In Guptapur Cancer Hospital in the year 2004. In Khanpur Hospice was established in 2007. And we have other hospice services being available at Mighty Nepal, Peace Care Home, Family Health, International Love Affiliate Clubs, and there are recently much more additions to this list of hospices. And the Nepalese Association of Palliative Care is one of the most prominent and active bodies of Nepal in the field of palliative care. And in connection with the government of Nepal, as a part of palliative preceptorship, which is a very important component of ensuring good palliative care services in a resource limited setting, the Nepalese Association of Palliative Care is providing orientation training program for the communities, as well as basic training program for the different healthcare professions. We conduct at least four or five times a year. And the Nepalese Association of Palliative Care is also involved in sensitization of residents and fellow doctors and nurses and allied health workers in the field of palliative care. So this is the pain protocol which is developed by Nepalese Association of Palliative Care, which is frequently being used in Nepal for management of cancer pain especially. And in association with the University of Virginia, Nepalese Association of Palliative Care has received an NIH grant to start a study about smartphone mobile application to improve pain management, which is being led by our professor. And so there is also, we are in development of national strategy for palliative care in Nepal, in coordination with the Ministry of Health, WHO, with the generous support from the Two Worlds Cancer Collaboration Canada. So it's already in almost final stage of development. In fact, the government has already endorsed the national strategy. Now we are in process of implementing it throughout the country. And for settings of palliative care in Nepal, we have healthcare-based palliative care settings. We have hospices. We also, there are some organization like Hospice Nepal Cancer Care Nepal and Nepal Cancer Hospital that is providing home hospice care to the patient as well. And we have community-level hospice palliative care services being provided by Hospice Nepal. So this is the scenario of palliative care in the world and we have a localized provision of palliative care within the country, which is being improvised over time. So at last, I'd like to conclude my presentation. We have been chasing cure rather than care of the patient. So as an oncologist, it's our role not only to deliver the best quality anti-cancer treatment, but also consider the impact of the disease and treatment on each patient's life. And we should never forget this motto by the corporates. We need to cure sometimes, treat often, and comfort always. Thank you.

palliative care

resource-limited countries

integrating models of care

disparities in palliative care

essential components for palliative care integration

community awareness