 Hello, my name is Christina Gerlach, I'm a physician working in palliative care with the hematology background, and I'm working in Heidelberg at the University Hospital. And well, thank you very much for the invitation to the Myeloma patients Europe masterclass. I'm fairly impressed by your achievements and congrats to the 10th anniversary. My special thanks go to Katie Joyner, who perfectly prepared me for the talk and discussion with you about palliative care in multiple myeloma. Well multiple myeloma, it's a marathon rather than a sprint and palliative care, maybe the right choose for a good run. When I introduce myself to patients, I like to ask them if they know about the term palliative care. And I get answers from faces, from voices, from the atmosphere in the room, about the perception of the concept rather than the term. Well, the aims for today will be, you will know about that palliative care is more than end-of-life care, you will be able to impute benefits of palliative care for people living with myeloma and their families. You will be able to screen for complex symptoms and psychosocial and existential burden in patients with multiple myeloma and you will be informed about working service models and resources to implement own palliative care service for multiple myeloma maybe in your place. Please make some notes on what you like to ask after the presentation and I'm looking forward to our discussion. I recently had the great opportunity to listen to Paul Richardson who dedicated his professional life to care for multiple myeloma patients clinically and in research. He was actually the one who compared multiple myeloma with a marathon, which is not commonplace. And he explained, multiple myeloma are multiple diseases and extraordinary complex. What does complex mean? It's like bringing men to the moon. I learned to compare complexity with a space shuttle mission. There is mission control, all the movement and men who are specialists caring for the disease, the hematologists, naprologists, radiotherapists, surgeons, there are the hidden figures, family and friends, those who are in the role of accompanying loved ones in difficult times. And there are the professional supporters responsible for the best possible quality of life with an curable illness, preventing and preparing patients and families for crisis, be they symptoms, psychological or social stresses. I will now focus on the role of palliative care in this context. What, why, when and how, what is palliative care? Why do we apply palliative care and multiple myeloma? When is the time for palliative care and how is the performance of palliative care and multiple myeloma? So what is palliative care? I would like to read out for you the WHO definition or maybe I just leave a few seconds so you can read yourself. So when you hear it's applicable early in the course of illness, a major hallmark is defined. Of course, palliative care includes end of life care when time has come, but it is so much more an additional layer of care, mitigating symptoms and psychosocial burden in all phases of illness. It's a type of therapy following guidelines that focus on the individual. Structurally spoken, I would like to explain institutions of palliative care according to the overview from the German guideline. But the structures that you can see here refer not to the German healthcare system, but to global structures of specialized palliative care. First of all, I would like to emphasize that most patients with multiple myeloma will most of the time get care from their oncologists or hematologists, also palliative care. This is on the left hand of the figure. I think you know well about general inpatient and outpatient clinics. But in some cases it makes sense to have specialized palliative care in place. This may be selective counseling, for example for pain control and advanced care planning in the outpatient clinic or inpatient care for complex symptoms, not so infrequently at the beginning of a treatment. When patients are in pain, for example, or are worried about the future, I think every patient and family as well should be informed about the services just to clear up the misconception of palliative care being end of life care only and to give them a bit of confidence in all this illness and associated uncertainty and contingency that there is an ultimate reliability. Just a look on another word. What is multiple myeloma epidemiologically spoken? So it's the second most common hematological malignancy and two percent of all cancer deaths every year. And we know that most of the time patients are a little bit older, 69 years old on average when the disease is diagnosed. But there are also some younger people. The five year overall survival is 54 percent and well the average age of death is 75 years. So much earlier than the life expectancy today. And you see there are also some younger patients dying by this disease. So why specialized palliative care? Because they suffer more without palliative care. These are some of our own data from a feasibility study of screening. You may recognize the distress termometer with zero meaning no distress and 10 meaning heaviest burden. Blue are patients with organ tumors. And red is the burden indicated by patients with hematological malignancies. If the distress level is above four patients probably need professional intervention. Well, you can see that hematology patients have a lot of burden. And in fact, we only confirmed what others already found. And further and one of the distressing factors is the prognostics uncertainty that patients, family and doctors have to deal with in multiple myeloma. This is a study from the US from 2003 describing patterns of decline at the end of life. Actually, the last year of life and patients with different groups of illness were repeatedly interviewed regarding their dependency in activities of daily life, which is an established concept in patient care in general. And I asked him at oncologist where to put patients with multiple myeloma. They found their cause of illness comparable to chronic organ failure, but a little bit better as recovery could be achieved with new therapies in many cases. So to come back to the complexity picture in the space shuttle, we it's resulting in an entry reentry disease trajectory. So our task in health care and family support maybe to stabilize patients in the orbit as long as possible and later also make them comfortable when crossing the line. So why making them comfortable? Because there is a lot of disease, a lot of uneasiness. We can talk about the multiple myeloma as a bone disease and we have a gender of suffering, bone pain, peripheral neuropathy by the therapies, post-soceric neuralgia, renal insufficiency, myosal suppression, going with weakness, fatigue, infections, bleeding, venous tromboemboloc events, the inevitability of recurrence. So patients know that there will be a recurrence even if they have cure for a while. And I mean all the dimensions of a shortened life. And I mean the agenda of palliative care not to, yeah, it's not hospice care, but it's the palliation, the symptom management, bringing relief, coping with disease, the social counseling, coordination and help with organization and disease. And also the support of informal caregivers, advance care planning to be prepared and well finally also end of life care. In terms of advance care planning and end of life care, we say hope for the best, prepare for the worst. We currently seem to have a problem with conveying the correct message. I would like to show you this study analyzing all the patients' understanding of therapy risk and benefits. It's quite a complicated picture, but under the bottom line the figures mean the patients had after goals of care discussions an overestimate of both the risk of therapy related morbidity and mortality as well as the chance of cure. I don't think it's bad performance in communication in all cases. It may be a way of coping of the patients, may better deal with high risk is expecting high chances for cure. I only know what it is and we have to deal with it. So when is the best time to start with palliative care in uncertain situations? I will show you some models of care. The working group of El Javari followed a scientifically proper and very interesting approach offering palliative care accompanying stem cell transplant to HEMA patients also solved this with myeloma and they could show improved quality of life, improved mood, less anxiety and improved symptom control when patients were regularly visited during the transplantation compared to those patients who were only visited by the palliative care team on demand. And strikingly this was also consistent after three and six months after the transplant when patients did not receive palliative care anymore, but they were really stabilized. Also the relatives had an improved outcome with less depression. And how did they achieve this? Well it was a lot about building report, about symptom control. You remember the additional layer about coping with the situation, helping with illness understanding, also with support with decision making. This does not mean that palliative care physician make decisions about the oncology therapy, but they may help patients to ask the questions that are really important to the patients themselves. Well and here you find again advanced care planning. Another model I would like to show you is the myeloma outpatient clinic in Barcelona which is in the hematology outpatient clinic. And here they did just a nurse based systematic screening and a comprehensive assessment based on the total pain concept. Which mean that pain is not only a physical symptom, but it means more suffering in a spiritual sense and psychological and social sense. And they found that rapid action helps the patient to improve pain, sleeplessness and they had 30% less symptoms than other patients. Barbara Gomez is a brilliant palliative care professor from Portugal who questions in the Journal of Clinical Oncology if earlier is better, why wait? Another model to detect patients with specialized palliative care needs is patient reported outcome measurement. So Christina Ramsenthaler found out for a British cohort that declining quality of life identifies myeloma patients at risk for approaching actually end of life. And predictive of stable poor quality of life or declining quality of life were the general symptom level anxiety and pain. So here you see back here, pardon. You can see that this model with the POSPAL instrument that you can use for free. We used it not only clinical but also for research and we found that you need to assess in depth the 13 symptoms with 20 items of quality of life aspects within six minutes. And we found out what might be typically German. I don't know that patients also wanted to have the right of not knowing too many details of their disease at some time. And confidentiality was very important and that they wanted that the my POS is used and found it useful as a guideline for the consultation with their physicians. Well, eventually I would like to share a patient narrative with you. A female patient 49 years at first diagnosis. She had some headache, dizziness, generalized weakness and appetite loss for five months. So the further work up showed bone lesions at the cleavus in the head and in the nose and also in the cervical spine. She had an anemia, hypercalcemia but no real insufficiency at first diagnosis. She's a single parent, commercial employee. She has three children and what we like to ask patients, what is important to you now? What is important to you now? And she said, well, I would like to become healthy again. I want my children being cared for. And of course, I don't want to have pain. And I mean, here you can see how the palliative care in conclusion with oncology or hematoconcology care can work. The patient received her several lines of multiple myeloma therapy and also symptom control, socio-legal consulting, all the support that brought her through four more years. And she got her transplantation and when she reached 43 years and her children were four years older. This palliative care in myeloma can take place at any phase of illness. Early it provides advice, it improves quality of life and later it provides reliable end of life care and support for the relatives. But as crisis and relapses may occur repeatedly, how can we know about the end of life is approaching in hematology patients? There are some evidence-based signposts that are very helpful. So limited treatment options or declining performance, if patients can do less, if they are more than 50% of the daytime in bed or lying. Both bacterial and viral infections, invasive mycosis or recurrent refractory malignancy and of course, as there are often older patients, more than two comorbidities. Age is not so relevant itself, but comorbidities or if they have severe graft-versus-host disease. I think this is quite helpful to be prepared for the worst case. I mean, this is important for patients and families, but to be prepared for the situation allows to finish things, to forgive, to say I love you, to say goodbye. And this is also important for health care professionals to make the right decisions and to prevent patients from, well, miscarriage of care and useless but burdensome interventions. And this preparation needs more time. I would like to show you that often there is a mismatch of expectations and reality of home deaths. That is what most patients wish for, home deaths, or that patients may prefer hospital death because they know the team, the staff in the wards, it's a second home. And what is very difficult as well as that hospices do not provide transfusion and that miscarriage may be overstrained with pleading management at home. I would like to link you to palliative care in your countries and the EAPC at LES is very useful source of information I would like to show you. Fortunately, many European countries provide good quality of care, but unfortunately some do not. You see the red dots, which is the total population in the countries, and you say the yellow dots, which is palliative care, the size of the red and the yellow spots should be the same, but you see it's not. Access for myeloma patients to palliative care needs facilitates nearly everywhere as misperceptions of the concept of palliative care are common in hematongology, but also palliative care services need to adapt their performance to the needs and demand of myeloma patients and their families. Well here have a look at the rank of your country in the economist ranking from 2015 and I think we see that there is still a lot of work to do, but however I think we can we can manage this. I hope I could convey a little bit that palliative care is much more than end-of-life care that it is very important to start early because myeloma patients have a lot of burden that can be mitigated by palliative care and that I could show you some interesting models or even just the screening and assessment to be a start for better care for myeloma patients. Thank you very much.