I'm Dr. Romila Silpakar, a medical oncologist practicing in Nepal. So today I will be discussing in brief about palliative issues in cancer patients and the very importance of palliative care in oncology. So as we all know, there are two models of care in medicine, the disease-directed therapy in which we give anti-cancer treatment pertaining to oncology, be it surgery, radiation or various modalities of chemotherapy, immunotherapy or targeted therapies, whereas the other aspect is the patient-directed approach, which includes supportive and palliative care, and which is very, very important aspect, which we often tend to forget as an oncologist and surgeons and radiation oncologist. So we need to integrate these two models to provide better and more patient-centered care, and we know palliative care basically is an approach which is a holistic approach that tends to improve the quality of life of not only the patients, but also their caregivers, and it aims to anticipate, prevent and reduce suffering, be it physical sufferings like pain or psychological aspects or social aspects or even spiritual aspects of suffering, and it tends to promote the adaptive coping of the patient and caregivers, regardless of the stage of the disease or need for other therapies. So in 2014, a World Health Assembly passed a resolution appealing to all the member countries to incorporate palliative care services into the mainstream healthcare system, and it should be incorporated and practiced by not only the specialists who practice palliative care, but also by any healthcare personnel in the primary and secondary level as well. They gave the obligatory needs as to assess for appropriate healthcare facilities, goods and services on a non-discriminatory basis. Every person living on the planet should have good access to palliative care, regardless of the country in which they reside, with the provision of essential medicines as defined by WHO. The basic medication for symptom control and terminal care is a basic right, with morphine being the cornerstone of pain management in terminal care, and there should be adoption and implementation of public health strategies, which include palliative care in national health policies. There has been widespread interest in integration of palliative care into standard oncological care, because now there are a lot of evidences which suggest that integration of palliative care early in the disease definitely improves the quality of life of the patient, reduces the suffering, as well as there are studies in which they have shown that it improves the survival of the patient as well. So various guidelines, including the ESMO and ASCO, has now issued guidelines to integrate this standard of care into oncological practice. So this is a very common conceptual framework in which initially palliative care was defined as something that is given only to the patient who is suffering from life-threatening illness at the end of their life, which was almost synonymous with hospice care, but now it has been incorporated that palliative care is an approach that should be incorporated through survivorship as well as end of life. So even if the patient improves or a patient dies, it should be incorporated early on in the disease diagnosis. And it is a teamwork which should include at all levels, including not only the treating physician or oncologist, but also it includes all the other multidisciplinary approach like the nurse, the religious leader, the psychologist, the psychiatrist, speech therapist, dietician, physiotherapist, the family members, and whatever the symptom the patient is having, all the associated faculties. So what are the benefits of integration of palliative care into the cancer patient early on? It improves survival, a longer and better quality of life. There is improved symptom control. There is reduced anxiety and depression among cancer patients. There is improved satisfaction with care as well as family satisfaction if we integrate palliative care early on. There is reduced use of futile chemotherapy at the end of life. So there are now various studies which have shown that if we assess the patient from palliative aspect, we can actually reduce futile chemotherapies and treat back doses. So if we integrate early palliative care, that has actually shown to reduce the cost of health care, especially in developed countries as well. So just a very classical example of importance of integration of palliative issues in oncological patients. So this is a study by Timmel et al., which was published in New England Journal of Medicine in 2010, in which the authors integrated early palliative care at the diagnosis of non-small cell lung cancer, advanced stage, and the one arm received standard chemotherapy and oncological care, whereas the other arm, apart from standard oncological care, they received palliative care as well. And there was a very, not only improvement in quality of life, reduced anxiety and depression of the patient in the intervention arm, there was improvement in survival as well. The overall survival improvement median was around 2.5 months, which I'm sure is, like, if it was a drug, it would have got an FDA approval. So it was, this paper changed the way palliative care was seen in oncological aspect. Similarly, the paper by Ethan Bash et al., they intervened, like, patient-reported symptom monitoring was done along with the routine cancer treatment. And if, just a simple design, they just, those patients who were receiving the standard treatment, they were advised for routine self-reported CTCA criteria. So they were routinely encountered, like, assessed for reporting of any side effects and their quality of life assessment using a web-based questionnaire. And we can see that there was not only improvement in quality of life, but even there was improvement in overall survival. So just a simple, you know, integration of symptom control into the standard oncological practice makes a huge difference in the patient's life. So what is the provision of palliative care in low-resource settings? We all know that of the 40 million people globally in need of palliative care, only 14% actually received it adequately, largely in the high-income countries. And the critical absence of palliative care services in low-resource setting resulted in significant cost being absorbed by the individual, family, and the local community. This results as a catalyst in the poverty cycle, stunning economic growth. So the WHO has repeatedly placed integration of palliative care into low-resource settings as a part of poverty elimination program as well. So the palliative care model in resource-limited setting is a little bit different because we do not have adequate specialists who are trained in palliative care settings for even like tertiary centers or things like that. Most of the palliative care has to be distributed among in the community by the volunteers or community health workers, whereas a huge bulk still remains in the primary health care centers like in primary health care centers or in district hospitals in case of Nepal. And very, very few patients are accessible to specialist care in tertiary centers with oncological services. So there has been a paper for palliative care in global settings, ASCO Resource Stratified Practice Guidelines. So this is very much applicable in Nepal and other low-middle-income countries. So just in brief about what is the status of palliative care in Nepal. So the onset of palliative care occurred with the hospital-based palliative care, which was established in oncology unit in Bir Hospital in the year 1991. In 1998, a nonprofit organization called Mighty Nepal established a hospice in Jhapa, eastern part of Nepal that was initially established to include as a shelter for patients with hepatitis, tuberculosis, and HIV-AIDS, which they later expanded to many other districts. The Nepalese Association of Palliative Care was established in the year 2009. In 2005, morphine was made available in Nepal. And under the leadership of one of our professors, Dr. Vishnu Datta Podilsar, oral morphine production started in Nepal in 2009. And all forms of morphine, the syrup, tablets, prolonged-release tablets, and IV forms are produced in Nepal, which is a huge relief for patients with palliative care. There is orientation training for communities, which is organized routinely by the Nepalese Association of Palliative Care. It includes basic palliative care training and sensitization of the doctor, nurses, and allied health workers. This is coordinated with the government of Nepal to provide training in palliative care, and this has been done very regularly, and it is continued despite the COVID pandemic. National strategy of palliative care in Nepal in coordination with Ministry of Health and World Health Organization has been done, and they have developed the national strategy with support from Two World Cancer Collaboration Canada. And there is an ongoing smartphone mobile application to improve pain management, and it's an NIH-funded grant that is almost over. So basically, palliative care in Nepal is still, there's a lot of things to be done, but the government and the Nepalese Association of Palliative Care has done quite, you know, appreciable amount of work to train the doctor, nurses, and health workers for palliative care in the community, which is very, very appreciable. So in setting of palliative care in Nepal, palliative care is delivered through health institutions like Bir Hospital, Bhaktapur Cancer Hospital, Bharatpur, BP Koirala Memorial Cancer Hospitals, and other premier hospitals. There are hospices that provide palliative services to patients, including the cancer patients. There is provision of home hospice care, which is given by Hospice Nepal Cancer Care Nepal and Nepal Cancer Hospital. And there is community-level hospice services also, for example, the Hospice Nepal provides hospice care and palliative care at the community level. So it's not very bad in comparison to other low-income countries, but we still have a long way to go. So coming to the eight domains of quality palliative care. So when we are giving palliative issues, when we are addressing the palliative issues in the cancer patients, we have to address these eight domains that are the principles of quality palliative care. The first being a structural aspect, we know if we are giving palliative care, there should be provision of the palliative care services, medicines. So this should be all taken care of. And the symptom assessment and management, which includes the physical aspects of the care, is the most common domain of palliative care, because almost all of the patients at advanced stage of cancer require some form of physical symptoms management, and pain being the most common symptoms that needs assessment and proper management. Apart from that, the most important, another aspect is the emotional aspect, in which we have now known from the various studies that almost all the patients who are diagnosed with cancer has some form of distress and emotional symptoms. So that should be properly addressed and treated when we are addressing the palliative issues. The other aspect is the social aspect, which include both relational, logistic aspects of the management of cancer patients. The other aspect is the spiritual aspects. We have to respect the patient's spiritual needs and spiritual decisions when considering the palliative care to the cancer patients. The other is cultural aspects, like while treating the patient, there might be certain cultural aspects the patient needs discussion. For example, like blood transfusion in certain communities needs to be discussed. So this sort of thing should always be respected when we are considering quality palliative care. There should be also legal aspects and planning, like how to take the palliative issues. For example, in the case we discussed today, the young lady with Kuchenberg tumor, we need to address her physical symptoms of ascites and the discomfort that is being given because of ascites. So we need to address that both pharmacologically or non-pharmacologically. We need to address the emotional aspects of a young patient being diagnosed with a metastatic incurable malignancy, not only to the patient, but also to the family as well, to the husband and to the family members. And we should also incorporate the social aspects like the financial status when we are planning the treatment for the patient. And how to go further with the treatment, like how to start, like, for example, we are planning the chemotherapy for the patient, what might be the adverse effects, how do we plan, how do we address those things? And on a long run, how do we address the end of life needs of the patient? These all should be planned properly. So coming to the primary palliative assessments, so we have, as I said, we have to assess the pain and symptom assessment, spiritual assessment, understanding, like giving proper information to the patient, especially in oncological setting, in an incurable malignancy. We have to give the proper information about the prognosis of the disease as well as the treatment options with financial toxicity, keeping in mind in our setting. So there are a lot of physical symptoms, but these are the common physical symptoms that we tend to assess in palliative setting. As I said, pain is the most common and distressing physical symptoms. Apart from that, the patients may have anorexia and other appetite or oral related issues. There might be genitourinary symptoms and incontinence related issues. Nausea is another, nausea, vomiting is another very common physical symptoms when we are discussing palliative issues. And other GI symptoms like constipation or diarrhea may be the issues. Respiratory symptoms are the next important issues, with shortness of breath being most common respiratory symptoms that we encounter in palliative settings, and it may be cough. Ulceration and other skin complaints are other issues, and skin complaints, especially rash, are increasing in incidence because of use of targeted therapies. And level of functioning should always be assessed either with the ECOG performance status or Carnosphere performance status. Allergy and other related issues such as fatigue or asthenia should be addressed, and sleep and other sedation-related issues should also be addressed with the palliative issues. So the symptoms of advanced cancer, what should be the approach? Now we know that patient-reported outcomes are the most effective comprehensive assessment tools, and we should assess the severity of the symptoms. We should identify the cause of the symptoms, and we should also identify the pathophysiology behind the symptoms for the proper management. We should always treat the cause. If there is a treatable cause, we should always treat the treatable cause, and we should always correct if there is any correctable issues. We should always relieve the symptoms with both pharmacological as well as non-pharmacological treatment. As a physician and doctors, we always tend to keep on doing pharmacological issues, but we often tend to forget the simple non-pharmacological treatment options, so we should incorporate non-pharmacological options as well. And we should treat the whole person, symptom-related distress, not only the symptom. We should treat the person as a whole, not as part of the organ-specific, and we should always be guided by guidelines. There are various guidelines for symptom management in advanced cancer patients from the American Palliative and Hospice Society or NCCN guidelines or ASMO or ASCO guidelines, so we should always be guided with these guidelines. And always keep in mind about the symptoms of advanced cancer, what might be the possible cause. We only tend to think about is it related to cancer, like direct cancer infiltration or compression or indirectly by paraneoplastic syndromes, but we should also keep in mind whether it is related to our anti-cancer treatment, which we are giving, and try to address those things as well. And sometimes the cancer patients are not only cancer patients, we often tend to forget their comorbidities, like whether they are a heart disease patient or diabetic or hypertensive or HIV-related. So what are the comorbidities and whether the symptoms are related to their comorbidities or concomitant medication associated with their comorbidities. This should always be addressed. And the pain, because it is the most common symptoms of advanced cancer patients, we should always keep in mind the total pain concept. It is not only a physical symptom. Pain can be caused because of psychological, spiritual, or social, so always try to explore what is actually causing the pain. And this is the very commonly used and very easy symptom assessment system in oncology, the Edmonton Symptom Assessment System. Apart from this, there are wide varieties of symptom assessment scales available, like the URTC quality of life scales or FACTS functional assessment of symptom scales, or other online PROs. We can use any of those and assess the symptoms. And the other is PEACE tool, which assesses the physical, emotive, autonomy, communication, economic, and transdescent domains. It incorporates 16 domains of various assessment, and it is very easy to use as well. So we should always keep in mind the malignancy-related symptoms, the treatment-related symptoms, and we should always balance these two factors for probable improvement in quality of life of the patient, and to some extent, if possible, survival in terminally ill patients. So in conclusion, we should always recognize and respond to the needs of the patient, keeping in mind the patient as a whole, not as a disease. Challenge and change the culture of care, incorporation of palliative care early in oncological management should be the standard of care now. Supportive and palliative care intervention should be integrated in oncology, personalized and based on the best evidence we have, and integrated model must be reflected in national and international cancer plans. So I think as an oncologist, be it GYN or medical or radiation oncologist or surgical oncologist, our role is not only to deliver the best quality anti-cancer treatment, but also to consider the impact of the disease and treatment on each and every patient. Thank you.

palliative care

oncology

disease-directed therapy

patient-directed care

integrating palliative care

low-resource settings