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10 Interdisciplinary Palliative Care Research The Development of a Web Based End of Life Care Educa



I'm Erica Matsuyama from Chiba University and I'm very happy to be here today and talk to you about interdisciplinary palliative care research the development of web-based end-of-life care educational tool for the elderly so you may feel sleepy after lunch unfortunately I am good at speaking Japanese not English but I will try my best to keep all of you awake during my presentation okay and this chart shows the location of Chiba University Chiba Prefecture where Chiba University is located it's just next to Tokyo by the way this red dog is mr. t bakhoum and as you can see from the side he looks like Chiba Prefecture and he is a prefectures official mascot and is widely popular and next our university has 10 undergraduate and 13 graduate schools including medicine pharmaceutical sciences and also University Hospital therefore we are in an environment where a palliative care research can be oriented with diversity of disciplines and research can easily collaborate in this presentation I will introduce you the current situation of end-of-life care in Japan I will talk about the web-based and life care educational tool that we developed to support both the elderly and their caregivers this hopefully will provide you with an understanding of how we are working towards creating interdisciplinary palliative care research in Japan at first district showed the reading causes of death in Japan in terms of the death rate from 1947 to 2017 the current main cause of death in Japan it's cancer followed by how to disease cerebral vascular disease and sonority due to a natural cord sonority is increasing significantly and recently overtook pneumonia cancer has been the leading cause of death since 1981 and as responsible for about 30 percent of all deaths in Japan however consequently palliative care is mostly associated of to cancer care by Japanese people however in this laboratory aging society the advancement and expansion of an RAF care in Japan should not only be focused on cancer patients but also very people with all other conditions such as chronic disease or dementia next chart currently 12% of people die at home and 80% in acute care hospitals despite 70% of them preferring to die at home there is a big difference between the Preferences of the patient and reality due to the ever-increasing costs of health care in Japan the government wants to shift the focus from hospital care to community care however the reason why the ala lot of hospital death is that many patients and families mostly wish to receive medical treatment until the very end for instance the patient of a family sometimes get angry why don't you do an infusion even though it is difficult to cure or becomes a disadvantageous for patient there is a caused by lack of communication between patients their family members and healthcare professionals since patients and their family hardly discussed and life care there they tend to miss time the safety to home care therefore we have developed web-based end-of-life care educational tool for them to encourage public awareness of advanced care planning now I'd like to move on to the a bubble of and out comments of our research the purpose of our large project is to aim at realizing end of life care to support the elderly in order to reap fulfilling lives and to establish a center of excellence for end-of-life care in cooperation with the public and professional in an aging society as for the center for end-of-life care this specialized centers seems to be a there is well established in some facilities such as all in Ireland Institute of hospice and palliative care or some universities in Europe but there is no such center in Japan to accomplish accomplish the aims we are divided into four groups called aided a group a group a advanced care planning research group Group D global research group Group II educational and running research group and Group D development of practice research group so in Group A a prototype for a web-based educational tool has been developed by using ICT and thanks to the the diversity and strength of our universities as you can see in this trial our interdisciplinary research team consisted of study researchers from nine areas including nursing medicine engineering horticulture health economics and policy theology ethics philosophy and law and politics the research member in Group A consisted of nursing medicine engineering and philosophy of law researchers and this right shows the phases of development of and implementation of ICD communication tool we have been working on a research project utilizing grants of over 260 thousand euro from the Japanese government since 2015 in the first phase the ICT communication to prototype tool was developed by for nursing researchers and one aging engineering researcher afterwards it was modified to reflect the results of a feasibility study for the public and the professionals for the public can participate use this tool for one month and for the professionals six expert nurses and six researchers nursing engineering and medicine were involved in next slide I will show you the first phase of the research to develop a prototype version one regarding the development process this tool has five components to think about advanced care planning from the objective point or bill to subjective point of bill and I will show you the actual screen on this tool when you click my wishes tab the following screen appears you can see five components first end-of-life simulated experience program second thought about a Alba net and third which is about two staring and false and life care preferences including advanced directive and last one my favorite thing in life and the below dial it have a diary function is also available in this tool it will be suitable for people who like to keep a diary if you didn't like writing they can upload photos that you they took with a smartphone in other words we can find out what the person is interested in from the photos without having to maintain a diary in this presentation I will demonstrate an end of life simulated experimental when you click it for types scenarios our discussions will appear like all the berry top of this page when you click case one if you a husband with COPD has become worse and fell into unconsciousness you can select the best action to take in this bottle cares firstly when you start the bottle case there is a background of married couple in their 80s shown on the screen on the next slide the husband fell down suddenly with discomfort and lose all consciousness and is transported to hospital by ambulance where the physician or clinician is informing his wife about his treatment while his wife is being pressed by the physician to make a decision for the emergency medical treatment she tries hard to recall his preferences then Sheila may remember he said to her and their families that he doesn't want to any unnecessary treatment from there the user will decide on the treatment from the point of view of his wife and pattern a you agree with the medical treatment over patent being as from his will I talked to the physician that he doesn't wish for anything more than this if we will choose pattern a couple of results will be displayed as shown on the next slide consequence one later on the husband regain consciousness and said to his wife that it was the right decision to get medical treatment consequence to after he regained consciousness he said to his wife why didn't you just read me pass away without any treatment their scenarios are real story in Japan based on previous research interviews to health care professionals who were working at hospital or hospice and palliative care unit the consequence of death to yourself or your family is unpredictable and you can never truly guess the outcome however the house users at this very moment can tell lies what might happen at the end of your life as you are you exploring several simulated cases and lie down how you feel from simulating death situations beforehand so far I have shown actual screens of this tool now I will introduce the results of the usability study for the public who used to this tool for one month this study was presented by at the advanced care planning international conference last March in Lawton the purpose was to evaluate the communication tool to usability and whether the tool encouraged the initiation of advanced care planning for example of community community dwelling adult data was collected from the entries on this tool website a self-reported questionnaire and a same structured interview to evaluate acceptability demand and practicality after one month you of youjung as for the result table one shows the demographic demographic data seven participants out of ten were over 65 years old and six participants only used a tablet computer table 2 shows the achievement rate of each completed tool component as you can see the highest achievement rate was the end life care preferences followed by the which is about truth-telling the lowest rate was the end of similarity experience program at forty five point six percent finally I'm going to explain Table three for themes related to the views of the YouTube usability were found by the thematic analysis the first same understanding of advanced care planning included that we would like to think about advanced care planning while I'm still healthy in addition one party fund aged 84 used this tool with her daughter and her daughter said using this tool together with my aging mother who isn't used to using tablet made me realize for the first time what my mother was thinking about most of the participants realized the necessity of advanced care planning education for themselves and their families however we needed to address that a few participants felt disadvantages by using this tool such as the last comment since a light confidential and personal matters that are difficult to explain to others I am concerned about the security of this tool so in future research I'd like to improve that tool so that it will become more user friendly and have higher security and then develop nursing intervention with this tool for the usage of a large number of the elderly finally I will explain working towards creating interdisciplinary research in the third phase we are developing a nursing program using the ICT 2002 during our past research process I realized some of the strengths of being on an interdisciplinary research team in developing the tool and engineering researcher has made technical improvements to make this tool more user-friendly in the future we plan to work on our CT research as well so a medical researcher who is an expert in geriatric medicine and clinical research will be involved in protocol development of our city in addition philosophy of the researcher has been involved in providing a perspective on bioethics that is important for patients and their families to consider end-of-life care Takayuki is a philosophy of law researcher he has contributed to periodical research by providing normative advice from the perspective of ethics law and molarity it is very difficult to explain the Greek anthos of liberal arts to natural scientists as a consequence conversation with natural scientists facilitates the evolution of liberal arts for instance he usually asked us philosophical questions from the book mortal questions by Thomas Nagel who is a famous philosopher questions are is my life and death only mine what is a good or bad death Oh which is was the death on an elderly person or that absurd we healthcare professionals unlikely to contemporary this the state of what gives us a perspective on death itself which is usually difficult thing about when providing here we needed interdisciplinary conversation much more he said I want mitigate the mutual misunderstandings and mistrust between natural sciences and liberal arts and nursing researchers didn't often often collaborate with researchers in other academic fields in Japan even though we belong to the same University in recent five years our university has facilitated to strengthen research by younger researchers and to ensure diversity our end of life collage project has been selected as an extra generous on priority research by our in Bertie and got the funds from University so we could collaborate with diversity researchers and university has also the department of academic industry collaboration called AIC thanks to this department in addition the end-of-life project i am collaborating with other engineering professors on research related to really that often develops in advanced cancer patients the staff in AIC who had graduated from the Faculty of Engineering requested me to talk about Lisa she's in nursing as a technology C's presentation meeting with local companies about five years ago in their meeting I explained the necessity to develop a simpler device that can detect our state of lymphedema after my presentation they introduced me to one professor who is an expert in fluid mechanics and studied blood flow in the University's Faculty of Engineering as this time twenty researchers affiliated with nursing engineering and medicine at the University being connected by AIC with their shared interest in green freedom since then the joint development of new equipment has been continued continued continuing as shown in the following slide this device is water content imaging by wearable sensor using the principle of bioimpedance ultimately we aim to capture the data corrected by the developed device and load them into AI this enables the patient to easily monitor the condition of their own limbs at home through a smartphone this is the last slide as I mentioned above I think that I was able to collaborate with engineering and agile researchers because there are there was a human resource who could connect the university system and the strength of the researchers in order to dissolve it is important to clarify the research is required for wellbeing of patients and families from the nursing standpoint and to understand and share the strengths of them in other disciplines creating an interdisciplinary researchers research team and I think it is important to function well that's all thank you very much [Applause]

Glenn Chapman

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