 Wela very good morning to you, thank you so much for being part of this particular morning show, my name is Ramma, this is why in the morning we are coming to you live from the broadcasting house here in Nairobi Kenya, we are also live on our website at www.kbc.co.ke4 slash y254. So ensure that you engage with us as we continue with this particular morning show, remember you can watch us from where at the comfort of your morning or of your living room, today it's all about understanding cancer palliative care, especially when it comes to cancer patients and much more, today we want to find out what is palliative care, what is it that we need to look out for when it comes to palliative care and how do palliative care providers do their job, how do they ensure that you get the best care from wherever you are, how do they do it, is it from home, from the hospitals, how do they move around and what do they do and they don'ts that they really consider when they are giving care to patients, remember palliative care is given to different kinds of patients, we shall find out what is it that we kind of patients will give and why is it that we have so many of them being actually cancer patients, today let's talk about cancer prevention also, in this conversation I'm joined by none other than Dr. Esther Mwenga, she is a palliative care specialist, Karibusana Doctori and thank you for finding time to join me, how are you? I'm fine, thank you very much. Asante sana, I'm sure that you engage with us, keep the conversation going, the hashtag is why in the morning at Ram Aguko and not why 254 channel, you can bring in your questions as you continue with this program, also let us tell us where you are watching us from and we shall sample your feedback as we continue with today's show. Doctori, let's find out, before we touch on the niti grittis, by definition, for those who may not understand what you are talking about here, what is palliative care? Thank you, thank you so much Ram, palliative care is a specialized type of care that looks at improving the quality of life of a patient in the family. So, in simple terms, we are looking at a patient who has a life threatening illness, by this we mean a condition that is difficult to cure or they are living in a, they've had unexpected difficult diagnosis and now they need support to work with them throughout the journey, so we are looking at improving the quality of life of this patient and also their family. And is there any particular disease that is associated with palliative care and why is it that we see most of it, because I'm seeing most of the palliative care providers associated with cancer, is cancer the only one or do we have others? So palliative care benefits a number of diagnosis, so if you have a patient with, you've mentioned cancer being the commonest, if you look at the burden of cancer in Kenya, it's really growing, cancer is documented to be the biggest burden in terms of the palliative care need, but if you think about other life threatening conditions or serious health suffering of patients with a hard to cure diagnosis, we are looking at patients with HIV and AIDS, patients with organ failures, like a patient you've heard of a lot of patients needing dialysis because they have renal failure, that's a patient who benefits from palliative care, patients with congenital, that is children congenital malformations, like those ones with heart issues, so they need support to work with them throughout the journey, most times they would be receiving care aimed at, it might not really end up with cure, some do get cure, but if you look at it, some will end up living with this for a long time, so we've talked about cancer, HIV, congenital malformations for children, sometimes birth disorders, they had cerebral palsy because of birth issues, patients with mental health issues, dementia, all these benefit from palliative care, so it's a wide range, you just need to look at how is it affecting their quality of life. If you look at all these different diseases that exist, the different conditions that are there, what are some of the most common challenges that you experience as a palliative care provider as you are on the field and you are administering care to these particular patients suffering from different conditions, yet at the same time, yes, it can be challenging. I think to start with palliative care is not, the service is not well known, so what happens is most patients will actually be referred for palliative care at end of life, but palliative care services ideally should begin from diagnosis, so if we are talking about a patient who has a diagnosis of breast cancer for example, when they are going through their curative treatment or medical therapy with the oncologist, they are also receiving palliative care, so both therapies go hand in hand and depending on the outcomes of care at the oncologist's office, one would usually decrease, so sometimes if the curative treatment is not really successful, what happens is now that they will receive more of palliative care and less of the curative therapies. You mentioned that we mostly go for palliative care towards death. Towards yes. What are you referring to particularly in this area? Are you saying when it's at the last stages, when things are so bad? That's when most referrals are actually done, but you want to change that so that if I have a diagnosis today, my healthcare team needs to tell me about palliative care as a provider, palliative care as a patient, so I'm receiving palliative care, I'm still okay, I'm of sound mind, I can make decisions, I'm not very sick, whether I worsen with my diagnosis, whether I improve, you see I'm still receiving this palliative care service. So initially healthcare workers would take care of these patients and then when you've tried all the therapies, they've gone to India, they've come back, you've done everything you've thought would work. That's when they go for palliative care. That's when now they say now let's refer you to a palliative care centre. So you see at that time the patient is even tired, the doctor is tired, so they feel you're giving up on them, but it's not giving up. Ideally if you start working with the patient from diagnosis, it makes it easy for them to cope with the illness. So one challenge that you're facing is this belief system or this trend that we go for palliative care when it's actually getting late. Yes. And we need to change that particular ideology, that particular belief system. When you're on the field, what other challenges do you face when dealing with patients as a palliative care provider? There are many issues also to do with the financial capabilities of these patients. If you think about it, if someone has a heart or a serious health suffering or a serious illness, most likely they'll have used a lot of resources looking for therapies. So by the time they're coming to a palliative care provider or by the time they're seeking support, you might recommend medicines and they tell you, I'm not able to buy. Medicines like pain, medications like muffin and they tell you, I can't afford it. So how do you take care of these patients? So there's a lot of social financial issues. And then in terms of family support, I think that's also a very big issue. A patient who has this diagnosis will face a lot of psychosocial issues because of lack of family support, friends leave you. So someone was telling me the other day that when they had a diagnosis of breast cancer, it seems like their friends used to do things without her because they felt that she was always sick. But for her she wished they would check on her even when she refused. So you see that aspect really brings them down as a patient. Sometimes they'll tell you, I don't feel like doing this but just being there and being present for them really plays a big role. And how is it for cancer patients specifically? Because now those are general challenges for many patients. Do you have those that cancer patients that you experience while handling cancer patients? So for cancer specifically, we still have the issues with finances because for them to go get chemotherapy or radiotherapy, they would need to go to a radiotherapy centre. So we have radiotherapy in Nairobi, in Eldoret. If you're coming from somewhere further than that, it means you have costs incurred. It means even your cost of transport, accommodation and treatment is high. And then the social challenges remain the same for them. And then in terms of think about they've lost work time. So some have actually lost jobs because of that. You've consumed a lot of your time going for therapy, for treatment. The employer decides we can't keep you anymore. Because we mostly deal with cancer patients, I want us to touch on palliative care for cancer patients. What are the steps that you go through while offering palliative care for cancer patients? So once a patient has a confirmed diagnosis because you need a tissue diagnosis from the oncologist or from the hospital. So for example they've been told they have cervical cancer. They're receiving therapy at a cancer centre and we have been in Kenya. They would also be enrolled to palliative care. The palliative care team would work with them starting from the issue of accepting the diagnosis because that's the first step. And then as they go through the therapy issues come up. So for example things like pain management, that's really a big burden for patients. Pain because of the illness, pain because of the therapy they might be using. And then they also have to accept that they need this support because you can't force the care on someone. They have to agree. Is it like you also need to be a psychologist at the same time? No, so you see we've talked about pain management. We've talked about they're getting their chemo, their radiotherapy, wherever they are. They're getting psychosocial support, spiritual support. So it needs a multidisciplinary team approach. So what happens you have the palliative care specialist leading the team. If they need nutritional support, their feeding patterns might have changed. You engage your nutritionist. They have spiritual issues, they are questioning life. Those questions that come up, why me, they are not at peace. A spiritual caregiver comes in. They need physiotherapy. Maybe they are not able to work or they are not able to do a certain activity. So you see they need physiotherapist, occupational therapist. They would need a speech therapist if they've lost a voice. So it's a team approach. So it's a team service and not by one person. I'm looking at the process that you go through all this. You said you've got different specialists coming on board. It means we are working with a team. Now for a patient, at what level is it that this team is to be able to work on that plan to be able to attend the patient. Are you starting from the time that they get the diagnosis at the hospital where they are still in hospital? Yes, so that's the ideal situation. And if you look at the cancer centers that are being set up in Kenya, the recommendation is there has to be a palliative care center at that facility. So once they are going through this cancer care, for example, the palliative care team comes on board and works with the patient. So they have a plan of care and you have goals of care for this particular patient. So it should start from the hospital, not from home? Ideally it will start from the hospital where the diagnosis is made. But the care can be given whether they are in hospital or at home. Now for many cancer patients, you mentioned it earlier that they complain about the financial implications because cancer is expensive, going through the chemo and all those visits. Does palliative care have the ability also to cushion a cancer patient from filling these diverse effects of funding and the medical expenses? So it's a challenge that cuts across many medical conditions, let's say that. In terms of cushioning patients against this financial strain, we know we've had a lot of talks in Kenya about universal health coverage so that patients are cushioned in families and they don't have to suffer financial distress. We also talk about having insurance covering these patients. So if you look at the market, most insurance companies now have covers for cancer and now our advocacy bit because I work with the National Palliative Care Association is ensuring that these patients are not, you know those fine prints that are usually written that care is only given in the facility, it cannot be given at home. So how do you make sure that home-based care is also covered within this insurance package? NHIF does cover cancer and it covers, if you go to a cancer center in Kenya, you will get these palliative care services as you get your cancer services. If you're not accredited by NHIF, that means that financial cover is not there but there's much that can be done because if you're looking at giving services for these patients where they are, we need to make sure that the cover is giving them support even if they're getting home-based care. So they don't have to be admitted in a facility but the health worker or the health teams, like we have hospices around the country, they're able to do home visits for patients and they're able to do tele-consults for patients so that they don't have to travel the whole mile just to get support. So it means you also give recommendations in regards to what they also need to do as individuals. Yes. I'm seeing a comment here, this is, Masi is asking, at what point do you start giving palliative care? Do you need to wait till someone is badly off for them to start getting palliative care? I know you mentioned that a bit earlier on when you started, maybe you can answer her. Yes, thanks Masi for your question. Palliative care needs to start from diagnosis and what we're also encouraging is that if you're a family member or you're a patient, ask your doctor about palliative care services because sometimes someone focuses on their speciality and they forget other things so even patients engaging health care workers helps make sure that these patients get the services they require. So keep commenting, keep talking to us. The hashtag is 1 in the morning at Ramagukon. That's why 2-5-4 channel ask your questions and we shall be able to answer them with that query here. You're saying that we need to take advantage of the universal health coverage plan and of course the hospitals are there to ensure that cancer patients are well advised in regards to what they need to do. I want us to look at still on part of advisory, cancer prevention. What are the things that we need to do to prevent ourselves from cancer coming from palliative care provider? The first step actually for prevention is what we call primary prevention. I'm sure we've had a lot of talk about how do you keep yourself away from cancer. So there are simple steps that people can always take up and follow. First being our diets, what we eat, taking care of what goes into your mouth. So being proactive about it and being intentional about it. So there is looking at reduction of refined sugars because we tend to eat a lot of that in our diets. So we are looking at are you always taking deep fried foods? A little oil is good but too much now becomes harmful to you. So we have diet, we have issues to do with exercise, staying feet, walking. Do you take the lift? Do you take the stairs? Do you walk to the matatu stage? Do you take a border to the stage? How active are you during the day? Are you seated the whole day? Those are also risk factors. So salt in the diet has also been associated with your risk of cancer and non-communicable diseases. When you mention salt and fatty food, I'm reminded of scenarios where people like adding salt on the table. Yes, in fact that is really discouraged. A few people who do that, before when you taste the food, and they like doing that before they taste. Yes, so you see those are things that you can intentionally change and you don't need all that. Salt is still good, it has some iodine but too much or rather in excess that becomes harmful to you. And sometimes people believe that chakula nima futa but if you see that oil dripping, you feel like a chakula nipiko, which will not be the case. So others will put a lot of soup, these ones are floating in oil. Yes, which is also expensive for you. So if you think about your expenses in the household. The other things are screening. So screening is simply looking for any issues in someone's body when they are healthy. They don't have any symptoms. And they are simple cancers that can be screened in Kenya. So we have a service called cancer whose screening is really affordable and available. And if you think about service called cancer is one of the cancers that are preventable. So if you take up a screening package regularly every 2 years and all these things depend on the patient. So you need to talk to your healthcare provider about it so that they advise and you use the correct route. So we have service called cancer screening that is done. Breast cancer screening and in October there is a lot of awareness around that. We have it available for women and for men too. We also talk about screening for... If you have a family history of a certain cancer, you are also eligible for screening. We are not saying because someone in your family has the cancer, you also get it, but research has shown that because you are exposed to similar environments, you might have similar risk factors, you might end up with a similar diagnosis. So it's good to go for screening as a preventive measure. And the reason why I ask this is because for many people we may think that palliative care is just all about you wait, get the disease and then you get palliative care. But actually you need to also learn how to prevent yourself from getting cancer because even as a cancer patient there are those things you need to do. There is a way your lifestyle needs to change now even including your diet so that it doesn't get worse. Is that true? I would say that the diet you are telling the patient with cancer to follow is you are talking about a healthy diet or a healthy routine. That is what I should also be doing. But sometimes recommendations in terms of diet are made based on the patients. For example, their kidney is not working well. So there are things that they are told do not do. So those are specific things. But generally speaking if we talk about when we are telling, for example this conversation when patients talk about if I have diabetes, I have a diabetic diet you are basically saying that this patient needs to avoid some things and take some things which is what we should actually be doing as people who are not patients yet. So if we can adopt that and if we look online there are many recommendations but you have to look at what is approved. We have organizations that are credible like the World Health Organization. Our Ministry of Health Kenya also has guidelines to give recommendations on the same. So if I have a diagnosis of cancer my lifestyle needs to improve. Yes, as you have said. But even my family's lifestyle needs to be the same. So that I am not the only one working this journey and I feel like an outcast of people are doing things differently. It is usually better if everyone in the family does the same. I want us to touch on this particular angle of the work place. Now you will realize that the person that you are giving palliative care is employed needs to at some point show up for work. They need to leave the house, go do some things so that they can put food on the table and even get money from our funds to cater for those medical expenses. So how do you balance and train this patient to be able to balance this kind of work life work and palliative care? That's very important because as we talk about palliative care we are talking about person centered care. We are looking at this person holistically. So they are not just someone with a diagnosis of cancer. There are people with a family around them and that's why we say palliative care involves the patient and the family, the community around them. So when they are employed employers have recommendations of how many days you need to be at work, sick ofs and those things. So there is a lot of awareness that needs to be done also for employers to embrace these patients or their workforce because they are still their workforce. So you need to be there to bridge the gap between the patient and the employer? Yes because those policy changes need to be done. For example we have talked about patients who have lost their jobs. It means they had to go for care and treatment and they lost some time of work and the employer might have because they have certain policies in the workplace that say you need to be here so many hours or so many days in a year. You've lost this so we can't keep you anymore. So the balance needs to be there. There are employers who have given patients going through therapy like days off or they are able to work flexible hours at the workplace. So they are still able to work. We are not saying they are not getting really different treatment and you are saying they are patients in the hospital. They are able to work but they need to keep up with their medical appointments so that they are even more productive at the workplace. So if for example they are overworked they end up sick they become admitted and you lose even more days but if you are able to make sure that they are not missing their medical appointments they have a good medical cover because that's also a big aspect and then they also have that support from the employer and the other workmates so that if I need some time off I know someone can cover for me for a few hours and I'm back but it's also a team approach in the workplace. But at the same time there are occupational hazards and that can be able to affect a patient. How are you able to gauge these things? How do you do it? So that you can be able to give your patient the best service regardless of the occupation and how are you able to prevent them from the occupational hazards that are there. So some employers have actually given or changed the employees terms or what work they were actually doing before. So there is that aspect of for example they have a week back they were doing manual work or they were standing for long hours so that can be changed they are given another department where they don't have to stand for too long. If it was a place for example they have a long issue they are working in a painting factory or somewhere there is a lot of dust they will be given alternative duties so that discussion needs to happen even as a palliative care provider as I am talking to the patient I need to know where they are working what support they need in terms of in terms of in terms of their support in the employment space but some are not employed so you also need to look at can they engage in income generating activities so that they keep going or do something else that is not really strain us for. But sometimes I know it can be had and I don't know if it has been for you can it be challenging dealing with the different employers because sometimes some of them can say no we don't have specialized work environment so if this person cannot be able to adapt to this then they let them go and that's where the human rights aspects come in because that is their right to work there to be listened to so if this employer there are many suits that have gone up people who have been illegally let go so a lot of things come up there are legal challenges and when we are talking about palliative care and the patients and families you are looking at aspects to do with the physical aspects there are legal issues that come up and then there are spiritual issues that come up and they are just general well being issues that come up in terms of the care of the patient and for someone who has a diagnosis of cancer if I had I was diagnosed with breast cancer today there is also risk of getting another cancer later so you see the prevention or rather the care of this patient does not end at the end of if they are given their radiotherapy kimo and they finish they need to be followed up and that's why it's important for us to talk about cancer prevention because you can get it another cancer exactly I want to take a short break but after this I want us to touch on now the family aspect the stigmatization the stigma that is there for cancer patient how is it for palliative care and sometimes when you enter that room the environment, the mood that you get what are some of those times that you've just gotten into a house and you're shocked you're downfounded wow this is how most people treat their own kin and after that you shall be able to tell us a bit of your experience when it comes to dealing with different families so let's take that short break after this we'll be back with much more remember to keep it going on our social media handlers the hashtag is one in the morning at Ramaduko and at Y254 channel it's all about cancer prevention and awareness when it comes to palliative care we're taking a short break we'll be back welcome back as I said earlier on we value your feedback let me just sample a few your comments on our social media handle and get to see what people are saying when you meet and doubt palli when you Facebook the hashtag is one in the morning at Ramaduko and that's why Y254 channel is where you can be able to ascend in your tweet I'm seeing Vivian and as I'm watching you from Kibra as I understand Vivian interesting conversation there I'm seeing this is Maxwell and as I'm watching you loving the show enjoying the conversation this is Agustin Asama good morning watching live and direct from Tengeniki Saumakwini county thank you so much Agustin you've sent in some present there Sam Kush good morning thank you so much producer Magustu Babu Red Lemon it's also enjoying the conversation tell us what you think about this particular conversation on cancer awareness and prevention thank you also for letting us know where you're watching us from ensure that you also tell us a bit more about what you'd like to learn concerning cancer and palliative care now Lahtari before we went on that break we were talking about how challenging it can be to be in the work environment and that there are actually rights that are there for for workers maybe you can touch a bit more about this particular attribute when you you are a cancer patient and you find it hard to work and the work environment is not that conducive and positive and it is affecting you what would you advise such kind of a person to do that's quite a valid concern most times you would have heard of these patients who have had a conversation with their HR departments most likely if you are employed there needs to be that conversation that takes place sometimes it's difficult for the HR team to understand what the patient is going through but I've found what works is if organizations are also empowered about the journeys these patients go through or if they've had a similar experience they're able to empathize with this patient but the doctor to the patient can also write a recommendation letter so that they take it to their employer and they're able to come to an agreement and see this is where we will balance and this is what we'll agree to do so that both the organization and the patient benefit so the patient is still earning a living and the employer still has the work force running for them so it can't be a one answer for all cases but it will have to be each person different approach based on what needs are there at that point it's actually not a one size fits all exactly and I love what you're saying I want us to touch on family stigma is there and for some cancer patients when they are told when they get that diagnosis that they've got cancer some of them feel like it's a death sentence what are some of the experiences you've had when you're on the field there you're dealing with families providing palliative care and you can clearly see that right here this is stigma stigma is it's quite a demoralizing aspect in terms of care and your rights so in terms of patient support and patient care the family is usually the first line of support for the patient because you have the family the patient and the family immediately around them so you see if the family is supportive of this patient the patient is able to thrive in many cases even the patient themselves once given a diagnosis of cancer they would loose hope so to say maybe because of what they've had before so now imagine the patient the patient's family around them most times they their families that have like distance themselves from this person we had a patient in Nyeri who had a diagnosis of breast cancer a lady she ended up being by the husband first issue with the husband was that he was saying that now she she has one less breast so she has one was removed the other issue is they thought she was going to die so he really like it wasn't an official divorce but you could see that she's been left on her own and that was her source of support they have big children so where do you turn to but the end was actually quite good for her because now she she went through hospice care she got support from the team where she was she now became a patient advocate so what happens is if a patient has a diagnosis of cancer she will be able to talk to you and give you that encouragement because there is something about someone talking to you with a lived experience as opposed to someone talking to you with just technical experience so they become good cancer advocates or good palliative care advocates in the community and that's what we need because even in the in the counties people who have gone through these experiences are now becoming more vocal they are asking for their rights they are asking that counties support their treatment and I'm seeing this advocacy program but I was following up they are trying to make to say that cancer should be declared a national disaster exactly so from the patient's mouth it bears a lot of weight because they've gone through they know where the shoe pinches they are able to articulate issues that are close to them because sometimes as policy makers you make things something else is a big burden while actually the issue is something different there's this example that was given of the Kenyatta National Hospital team was looking at issues that face the cancer patients and something that came out is the patients talked about having challenges with accommodation when they are going for care but also aspects of they don't have water to drink so just having a dispenser or having clean drinking water for them those issues make a big difference I want you to talk to the families outside there because now I am fully aware that you for I don't know if there are palliative care providers who stay in the homes I don't know if they are there but what I know is so far you work in shifts those are there or not but you can enlighten them but how is the work plan and depending on the work plan there is there time that now you leave the patient to be along with the family what would you advise this family how should they be handling their patient that also helps when you are back the next day you don't have to start afresh so palliative care is provided in different settings so this is the hospital setting we have palliative care units within hospitals we have hospices that are standalone centers that offer these services for patients and home based care is also offered so what happens is based on the patients needs and the location for example if I am near a health facility it is easy for me to work there and get support from the team the palliative care providers or the hospice teams can visit you at your home depending on what agreements you have with them sometimes a patient is bedridden they are not able to commute so it is easier to bring the help worker to them their instances where someone has needed to have 24 hour nursing so you employ someone to take care of you at home and offer that care but they still consultation with the other team members so that they are receiving the holistic care and support and patients really prefer being at home when they are getting services remember we are talking about maybe a life long illness life threatening illness it is not like malaria where you know the diagnosis is malaria take a tablet and you are fine tomorrow you test and you are fine this one you might have it for years 20 years, 5 years, 2 years 2 months you don't know so they prefer being at home so there are various mechanisms that can enable them to receive the care at home either the health worker coming to visit them weekly or every 2 weeks depending on how stable they are they could be admitted to an inpatient facility and we have a few around that offer inpatient hospice facility and you are able as a family you are able to visit your patient as regularly as you wish remember admissions also to hospitals we usually limit the visits to the patients because of the risk of infections the different patients are admitted but if they are in a hospice environment or they are specialized in patient facility organization for patients with such similar illnesses it's easy to control that it's easy to control patient visits when they are at home it's easy also to control the environment around them the noise, the food they are eating who is cooking for them who is visiting them and all that but yet the family has a role to play the family is the number one support for this patient and they know what the patient needs but we also say that the patient needs to be engaged in those discussions so it's not just the health worker making a decision it's not just the spouse making the decision for this other one the parents making a decision for the child it involves the whole team so it's a patient, the family and the health care too what would be your advice to that family that is watching you today and they are having a patient with them what would be your piece of advice that they can be able to grasp something that they need to be remembering every single day that will help them in this journey for providing care for their patient don't shy away from taking care of the patient of your patient remember today it's your patient tomorrow it might be you and these patients usually when you get feedback from them they'll say being there really mattered so when you're just there for the patient as a family, as a caregiver the patient really appreciates that the patient feels that they are not abiding because what has happened is some people have ignored that person because maybe they are always sick they always need to be taken to hospital but the care and support is really crucial I want us to bring this conversation to a close and I would like to give you a time to have a final word and as you do so you can give a recommendation especially to the government your call to order for the government because there is somebody who is watching you today that may be able to hear that voice what would be your recommendation to take care of course wrapping it up within that seconds so I think first of all I'm really proud of the ministry of health because we launched the palliative care policy last two weeks ago which is the first policy and this is a big milestone because it helps guide provision of these services and I would encourage each and everyone of us if you have a patient who needs care and support please ask your health care provider about the services please read more and please don't shy away from asking for help even as a provider or as a patient as a patients caregiver you also need the breaks you also need to rejuvenate yourself but don't shy away from taking care of these patients and taking care of their families so we want palliative care in every county so that patients don't have to travel far to get these special services Thank you so much Lakari that is Dr. Esther Muigga who is a palliative care specialist who has given us a lot of information actually I believe that you've gotten what you need when it comes to cancer prevention and awareness and also palliative care Thank you so much for your time and I appreciate it Thank you so much to the end of today's this conversation on health remember to keep the conversation going even on our social media handles we're taking a short break we'll be back with more in a bit this is why in the morning