Excerpts from Japan Society for Dying with Dignity Newsletter No. 164, January 1, 2017 Contents: A special table talk with former Prime Minister Junichiro Koizumi Enrollment to JSDD and becoming a life time member -------------- 1 New Year’s Greetings from JSDD President Soichiro Iwao ------------------ 9 New plan under for chronic patient hospital beds under deliberation -------- 11 Special Table Talk ― Dying Naturally like the lions ― JSDD President Soichiro Iwao, Vice Presidents Yutaka Suzuki and Kazuhiro Nagao surrounded former Prime Minister Junichiro Koizumi, a ten-year member of JSDD, for discussions after a 1 round of playing golf. Topics jumped from ending one’s life and how to maintain a healthy lifestyle, to interesting episodes during his administration. Collected information on dignified death during his tenure as the prime minister Iwao: Thank you for coming today, Mr. Koizumi. You became a JSDD life time member in 2006, while you were still the Prime Minister. It was all over the media as sensational news that our Prime Minister supported an organization that refutes life prolonging measures. Koizumi: I’ve had many opportunities to visit hospitals and watch so many patients wrapped around in tubes like spaghetti. I always felt terribly about that kind of situation. Our ancestors just simply died of old age when there were no treatments or appetite for food. It was a natural transition to death. I always thought that I would like to die naturally like that when the time comes, and so I started to collect information from JSDD. I want to die refusing food and reduced pain. Iwao: Refusing food sounds like it requires a strong will… Koizumi: I love watching documentary films about wild animals. The most impressionable one was a documentary I saw about a group of lions which the producer pursued for years. The strong male leader surrounded by a group of females and cubs in his prime gradually grows older and weaker, and eventually loses to a younger, stronger male lion who takes over the group. The old leader lion gets heavily injured and is no longer capable of catching game. Too weak to move, he stays away from the group and lets flies and parasites swarm around his nose, and eventually dies. When wild animals can no longer eat, they don’t seem to feel any pain. Once they can’t catch their own food, they naturally die—it’s a Providence of Nature, or a Circle of Life. On the contrary, humans are fed liquid food even when we are unable to eat solid food with our own teeth. We have care givers who help us. Once I can no longer eat and drink my favorite sake by myself, I want to die quietly like our ancestors did. My grandfather (Matajiro Koizumi, former Diet member of the Lower House) died suddenly in the middle of the night, but he was doing well and in high spirits during the day. He was 86 years old. Iwao: I am sorry to say but your elder sister, Michiko Koizumi, died last August and was also a JSDD member for over ten years. Koizumi: My sister was 84 when she died. She took care of my children, Kotaro (actor) and Shinjiro (current Diet member of the Lower House) when they were young. She took the role of their mother and was the core pillar of our household. In her old age, she was gradually unable to eat, but her mind was crystal clear until her last moment. She died the morning after I visited. She had requested to refrain from any life prolonging measures, but to give her pain alleviating medication, and her doctor agreed to her request. 2 Dr. Soichiro Iwao- President of JSDD; Former Director of Medical Policies Department, Ministry of Health, Labor and Welfare; Visiting Professor at Keio University School of Medicine. Born in 1947, he graduated from Keio University School of Medicine (second from right). Dr. Yutaka Suzuki– Vice President of JSDD; Former Chairman of Saitama Social Security Hospital. Born in 1943, he graduated from Keio University School of Medicine (far right). Dr. Kazuhiro Nagao – Vice President of JSDD; Owner of Nagao Clinic, Amagasaki City, Hyogo Prefecture. Born in 1958, he graduated from Tokyo University School of Medicine (far left). Withering with alleviated pain Suzuki: I think that God created us to not suffer from pain when we reach our destined time to end this life. My mother died the same way. I often use an analogy when I have speaking engagements; crickets die in the autumn, but we never see them suffer from excruciating pain. Koizumi: I think our bodies have a certain defense mechanism which naturally reduces pain when we’re no longer capable of eating. Iwao: Dr. Nagao, many doctors feel that not providing patients with adequate nutrition is the same thing as starving them to death. Nagao: In my line of work, I have provided in-home medical care to over 1,000 terminally ill patients. When patients want to take the natural path and not be force fed, as you say, pain does not seem to be such an issue, so it is unnecessary to use high doses of pain medication if used at all. However, in most cases patients are rushed to the hospital where they are given full nutrition, which causes the pain and suffering. What happens next is that due to the severe pain, they are given high doses of morphine and purposely put to sleep, even though they may be fully conscious. Natural withering leads to reduced sensation of pain. When nutrition is given 3 excessively, more than what the body needs, then it is unable to process it; therefore, the patient suffers from pain and accelerated death. I wrote a lot of books about this concept. Chewing your food contributes to good health Koizumi: That’s good to hear. By the way, many people over the age of 80 are still active today, taking long walks and playing golf. It seemed unimaginable when I was younger. My father, Junya Koizumi (former Chairman of Defense Agency) died of lung cancer at the age of 65. I always thought that I would do my best in my political career until the age of 65, and then take a full retirement. I wasn’t sure how much longer I’d live past 65, but I knew I would enjoy it like my grandfather did, playing cards with grandchildren and gardening (taking care of plants and bonsai). I am now over 70, and pretty much living an active life that I had always dreamed of. Suzuki: It seems to me that children are always concerned about how old their parents were when they died. Koizumi: I thought that another way to maintain my health was by exercising regularly. I started this simple kind of exercise six months ago. It’s just four basic types of exercises like stretching the spine and back muscles. At first, my legs were so sore that I couldn’t move. I don’t have an instructor or a personal trainer, so I read a book with photos and just followed the pictures in the book. Now my body is very flexible. Suzuki: We watched how you walked. Your quick strides are very impressive for someone your age. Koizumi: Yes, I’ve always been a fast walker. We often tell old people they should walk to avoid osteoporosis. I want to tell them to walk as much as they can while they can! Likewise, it’s too late to start eating food high in calcium after being diagnosed with osteoporosis. We must eat good, nutritionally balanced meals while we’re still able to eat, and it’s good to eat meat sometimes. One of my relatives was a very strict dietitian. He often came to our house when I was a child and told me that there’s no need to eat something soft just because I had a stomachache, but to eat normally cooked rice. The important thing is to chew until it almost turns sweet. The more you chew, the more saliva is produced, which helps with digestion. Suzuki: That is absolutely correct from a medical point of view. If you chew rice enough in your mouth, the rice will turn into porridge before it gets to your stomach. 4 Koizumi: When I attend summer meetings, lunch box (bento) is often served. Every once in a while, I can smell the staleness. It’s impolite to refuse it, so I just chew it excessively until it tastes sweet, and I don’t get a stomachache (laughs). I don’t think people chew rice until it gets sweet, and they don’t know how much chewing contributes to good health. I always try to chew my food a lot. Familiarity is good enough Iwao: It seems from the outside that most prime ministers age considerably when they retire from the office compared to when they first took office from the stress of the work. You look much more energetic and younger now. Koizumi: Oh yes, I’m much more energetic now. Ten years have passed since liberating from the pressure and stress of being a prime minister. During my time in the office, I never played golf, and I had no energy for physical exercises. I was so exhausted that I jumped into bed at night, and the alarm clock woke me up early in the morning. Once I was awake, I could never go back to bed. I had to read briefings prepared for Diet sessions. Iwao: It seemed that you rarely stuck to the script prepared by your staff during Diet sessions, when previous prime ministers customarily just read their scripts. Koizumi: It was very rare that I read the scripts, but I did read them beforehand and understood the general concept. The Ministry of Foreign Affairs and the Ministry of Health, Labor and Welfare used to prepare lists of possible questions and answers, which they stayed up all night to prepare because they wouldn’t receive their opponent parties’ questions until very late. Once, I was told of a complaint made by a staff member who had prepared these briefings that the prime minister didn’t even read the material they spent all night preparing. My response was that I read everything they prepared until understood the general concept, so that I could answer questions in my own words during the sessions. I wanted to tell them not to worry because I would never slip and say the wrong thing (laughs). Iwao: I have known you since I worked as Director of Medical Policies Department under Ministry of Health, Labor and Welfare, the same time you were the Minister, and so I knew that you were the same person even after you became the Prime Minister. Koizumi: I think that having a general understanding is fine, as long as I can explain to the people in my own words, which I think actually makes it easier for them to understand. 5 Sometime, I watch ministers reading their prepared scripts on TV interviews, surrounded by media. I don’t think it looks good. Suzuki: How are you enjoying sake after you were liberated from all the stress and pressure (gesturing tipping a glass)? Koizumi: Oh, I am drinking sake every day. My body can tolerate a great amount of alcohol before it shows, fortunately. As you may have heard from my past, I can drink up to two ‘gou’ (1 ‘gou’ = 180 mL) (laughs). A drunken press conference Speaking of sake, I now recall a specific meeting on August 8th, 2015 about the dissolution of the Postal Service. When a bill for privatization of the Postal Service was rejected in the Upper House session, Diet dissolution was pronounced. My meeting with the directors of Japan Economic Organization Federation was scheduled for 6pm that evening. The meeting was locked in several months prior, and cancellation was impossible. We made a compromise to have the meeting over dinner. Beautiful dinner bento boxes were served, and since I have a high tolerance for alcohol, I requested sake. My staff advised me to not drink too much, but I just kept drinking till I had about 2-3 gou (360-480 mL) of sake. After dinner, I had a press conference at 8pm, a bit drunken. I can confess now! Suzuki: It’s probably a good sign, proof of good health to be able to drink a little every day. Koizumi: To be honest with you, when I had my first physical exam after stepping down from the office in September 2006, my blood sugar level was awfully high. I guess I ate out a lot, eating high calorie food. For about three months after that, I stopped eating out and ate lots of home cooked vegetables every day. 80% of my diet was vegetables. Finally, my blood sugar level dropped down to a normal range. I realize now how important your diet is for good health. 60,000 people are over the age of 100! Iwao: You are now 75 years old and entering the “oldest” of the elderly category. Do you feel any differently crossing over to the next age bracket? Koizumi: No, I don’t feel any differently. I think we’re living in an era in which people are active no matter what age. The year before I took over as the Minister of Health, Labor and Welfare, which was in 1987, there were just over 2,000 people who were 100 years old or older. Now, there are over 60,000. It is amazing, and 80-90% of them are women. This is just my 6 personal opinion, but women in general take better care of themselves by not overeating or overdrinking, and they get more beauty sleep at home (laughs). When I was the Minister of Health, Labor and Welfare, my emphasis was placed on three things: 1) well balanced diet, 2) adequate exercise, and 3) ample rest. Personally, I found #3 to be most important after stepping down from the prime minister position. Nagao: Genetically speaking, women are meant to live longer than men as well. We even have a term for people who live longer than 100 years now, called “centenarians.” It seems that most of them have very little stress. Some medical schools are conducting research to find the secret of longevity. Iwao: JSDD members who are over 100 years old are 272 in total, of which 204 members are women. There are over 10,000 members over the age of 90. Nagao: Currently, I have ten patients who are 100 years old, and all of them receive in-home terminal care. How did they live so long? Well, I think it’s because they never got really sick in the past. In Japan, 80% of all 100+ year olds are under some type of care. When they get to that age, their bodies slow down and muscles become weak and frail, which is usually when people must transition from being independent to being in custody of full time care givers. Research is being conducted to find ways to prevent this “frailty” from occurring. By watching how quickly you walk, I think you’ll be fine for quite some time. 3.11 changed my life (March 11, 2011 – The Great East Japan Earthquake) Iwao: Japan has now become an elderly society. It is predicted that by 2025, the elderly population will reach 35,000,000. In light of so many people aging and living for a long time, it is important to reevaluate their goals in life so that their lives have a deeper meaning. Being bedridden in a hospital just for the sake of living longer would be a sad and miserable ending to your life story. Koizumi: As I’ve mentioned earlier, I was always conscious of what age my father died. Fortunately, I became a prime mister at the age of 59, and resigned at 64. I thought any life left after that was icing on the cake. I never thought at the time that I would take on another major mission, but here I am, indulging and pouring a lot of energy into the “Zero Nuclear Power Movement.” It became my new life mission. The Last Chapter is worth living for Suzuki: It is so important to have something that you feel passionate about, or worth living for, and continue achieving that goal, whatever it may be. Koizumi: No matter how old you become, you need something that you enjoy. It can be reading, playing golf or cards. Lately, more and more men are taking up cooking as a hobby. Since I was young, I have always enjoyed reading every day. Now that I have more time, I can read to my heart’s content. I find myself reading so much so quickly when it is the kind of book I like. It is amazing. 7 Iwao: In your speeches to the Diet, you often quoted Yozan Uesugi (The prominent Lord of Yonezawa Clan 1751-1822) and Echigo Nagaoka Clan (Edo Period). Are they from the books you’ve read? Koizumi: I love reading about the old Samurai days and history books. When 3.11 (The Great East Japan Earthquake) happened, my life changed. Ever since the Fukushima Nuclear Power incident, I always include in my speeches my opinion that Japan can survive without nuclear power. I did a lot of research, and am convinced that Nuclear Power supporters’ slogan is all wrong. They claim that 1) nuclear power is SAFE; 2) nuclear power is least costly; and 3) nuclear power is a permanently clean energy source. My speeches now are usually 80-90 minutes long, and I stay standing up. I get to talk about something that interests me, and I feel like I’m making a difference. Iwao: It is so wonderful to be able to live the last years of your life doing something worthy in this elderly society. Your high spirit and energy inspire us all. I would like to ask for your greater involvement in JSDD’s future activities as our Senior Advisor from this point on. Would you accept? Koizumi: Yes, I will gladly accept. Photo: Junichiro Koizumi Former Prime Minister (April 2001 – September 2006). Became a Diet member at age 30. His assignments include: Minister of Health, Labor and Welfare; Minister of Posts and Telecommunications; Presidential Candidate for the Liberal Democratic Party. He was considered “eccentric” when he claimed he would completely revamp the Liberal Democratic Party, but sees himself as a man of common sense. Dissolution of the Postal Service became his priority when he was nominated as the Prime Minister, and did end up privatizing the Postal Service. After resigning his office, the 3.11 Great Earthquake incident led him to the “Zero Nuclear Power Movement.” He was born in 1942, and graduated from Keio University with a degree in Economics. 8 New Year’s greetings: looking 10 years ahead Living Will hits close to home as we become a “death abundant society” By Dr. Soichiro Iwao, JSDD President Happy New Year! JSDD celebrates its 41st anniversary. As our society becomes predominantly elderly and experiences more deaths in the upcoming ten years, the living will should become a hot topic. Our direction and policies in preparation for our 50th anniversary will be published in the next spring issue of the newsletter. Here, I would like to touch on the status of the living will. What our society will look like in the year 2015 in terms of medical care and other social aspects has been discussed over the past several years. Ten years from now, our baby boomers will reach the age of 75 and above, and the elderly population will reach a peak of 35 million. That means one out of three people will be over the age of 65, and one out of five people will be over 75. This is what we call the “elderly society.” LW even more necessary for elderly society Statistical research indicates that the number of annual deaths in 2025 will be about 1.6 million, of which 90% will be elderly death, 30,000 more deaths than now. That’s what I mean by a “death abundant society.” Inevitably, where and how elderly people should die will become a major issue in the “death abundant society.” Whether or not these elderly people will be able to spend their last moments peacefully depends on all of us creating a society in which individual dignity and wishes are respectfully honored. The living will is an importance message, or an expression of how you want to spend the end of your life medically to your loved ones and healthcare providers. To date, JSDD has enrolled over 250,000 members, half of whom are current active members. Strategic Plan for better results JSDD’s living will has been highly evaluated and socially accepted in Japan as an effective, autonomous expression of patients’ determination regarding end of life medical care. However, it is necessary that we have a strategic plan to adapt quickly to the more complex, fast changing society of the future. In 2015, JSDD published a report compiled by a study group consisted of professionals from outside agencies, and presented the following criteria required to validate the patient’s expression: 1) Verification of the patient’s mental capacity 9 2) Confirmation of the patient’s continued wish/will 3) Specific instructions in case of patient’s mental incapacity One solution would be to ensure there is a witness upon the issuance of the LW, and having an agent appointed who can represent the family members. We must accept the reality that there will be eight million dementia patients in the near future. The survey JSDD conducts every year for the surviving family members indicates that more than 90% of all living wills submitted are honored by medical professionals and healthcare providers. This impressive number is a direct reflection of our efforts for the past 40 years to spread the concept of the living will by deeply considering the meaning of life and death. Other numbers reflect some of the obstacles we face about ensuring peaceful end-of-life for all people. JSDD will continue our efforts to educate our medical community to accept and honor patients’ living wills. LW issuance by local municipalities and medical associations There is a new trend related to the social recognition of the living will. Currently, many hospitals require patients to submit their directives, similar to the JSDD version of the living will, upon admission to their medical programs. Local medical associations and municipalities have also begun issuing their own directives, including living wills. I recently heard the following story: Yokosuka City of Kanagawa Prefecture just started a new campaign called, “Let’s live at home until the end,” as one of the Community Comprehensive Medical Care System programs, in which all local residents are issued a guide book with two examples of healthcare directives, one of which is the JSDD living will. I was told that the city is planning on developing its own form of living will. The other example in the guide book is the ACP (Advanced Care Planning), which includes the LW issued by the National Center for Geriatrics and Gerontology in Ohbu City, Aichi Prefecture. This is a total care planning shared among the patient, family and healthcare providers, and includes an appointed agent in case the patient loses his/her mental capacity. It may seem like we’re losing a part of our core mission in a way, but we also embrace the fact that a city took a new approach to this matter on its own for its people. To see many forms of the living will is definitely a sign of need for expression of patient’s self-determination, and I foresee a vital role of the living will in the new elderly, death abundant society. I think the main agenda of JSDD for the upcoming decade will be the exploration and implementation of the improved and universal living will. Participation in Japan Medical Association Bioethical meeting 10 Lastly, I would like to share with you about my participation in the 15th Bioethical Committee Meeting held by the Japan Medical Association, for which I have been a committee member since last November. A report in response to the inquiry by Dr. Yoshitake Yokokura, Chairman of Japan Medical Association, “Terminal Medical Care for an Elderly Society,” will be published in November. Reviewing over 40 years of JSDD history, I would like to not only keep disseminating the concept of the living will, but also challenge all the medical professionals to emphasize honoring of patients’ wishes while providing terminal medical care. I wish you all the best. Thank you. A board meeting was held on November 17th last year, which approved the assumption of former Prime Minister, Junichiro Koizumi as JSDD’s permanent senior advisor, effective January 1, 2017. Born in Yokosuka City, Kanagawa Prefecture, the 74 year old is third in his family to hold a political office. From his grandfather down to his second son, a Diet member of the Lower House, there are four consecutive generations of political career in his family. He held office as the Prime Minister from April 2001 to September 2006, three consecutive terms. He became a JSDD member while he was in office. JSDD now has a total of five advisors: Mr. Jiro Ushio (Chairman of Ushio Electric Corp.), Ms. Chikage Ohgi (Former Speaker of the Diet Lower House), Mr. T. Okuda (Former Chairman of Toyota Automobile Corp.), and Ms. Michiko Yoshinaga (author). New plan for 140,000 hospital recuperation beds to meet new demands for chronic medical treatment and care 2018 Modern facility plan designed to provide terminal medical care to elderly patients in home-like atmosphere Acute patients in general hospital beds typically move to recuperation beds after completing necessary medical treatments, for instance, patients who still require mucus suction or artificial dialysis. There are currently two types of recuperation beds in any hospital. One is for those who require some care (61,000 beds total), which is covered by long term care insurance. The other type is for those requiring actual medical treatments (213,000 beds total), which is covered by the national medical insurance. Together, they make up 15% of the 17,770,000 total number of hospital beds in existence nationwide. 11 Proposed Facility Plan Targeted patients Space per patient per room Doctor to patient ratio Nurse/care giver to patient ratio Physician On-Call Type Need medical Stable, but need treatment some care Shared room, Shared room, 2 2 8 m (≈ 86 ft ) 8 m2 (≈ 86 ft2) 1:48 1:100 Residential Type Stable 1:6 1:3 1:3 Individual room, 13 m2 (≈ 140 ft2) None This reorganization plan has been under deliberation since last June by the Social Security Council Special Subcommittee, and final resolution is expected by February. The government’s aim is to maintain half of the existing recuperation beds for patients in need of intense medical treatments, and get rid of 137,000 beds that have been used for recuperation. Such a drastic reform is necessary to cut down the rapidly increasing medical expenditure by the federal government. Ministry of Health, Labor and Welfare has submitted a plan to refurbish eliminated beds into new, modern types. Three designs for patients based on conditions and comfort level Based on the extent of medical treatments needed, three types of facility designs are suggested: two facility types in which full time physicians are available, and one residential type (similar to assisted living facilities in the U.S.) to which physicians visit patients routinely or as needed. *See table above An assisted living residence will be built on the same site as a hospital so that the medical care system is easily accessible, and visiting medical teams are in proximity. The new facility plan takes into account the practicality and usage of the current medical facilities. Based on current data, Ministry of Health, Labor and Welfare projects the following patterns for the usage of future facilities: Average age of patients is 81 – (light-acute) using general hospital bedding and requires routine care level 4 and above (38%) Average age of patients is 85 – using recuperation bedding and requires routine care level 4 or above (85%) Average number of days stayed in general hospital bedding (acute) - 168 days; death rate 27% Average number of days stayed in recuperation bedding – 484 days; death rate 35% 12 The above patterns indicate that patients’ basic requirements will be support for daily living activities and substantial terminal medical care. Death rates also indicate that most patients will likely stay in hospitals through their terminal stage, which will require availability of full time physicians. Although we’re all aware that a drastic reorganization of the system is imminent, anxiety from both sides, patients and healthcare providers, is endless. In the past, there have been attempts to reorganize the system to facilitate the growing needs of an elderly society, which ended up in failure (*see footnote below). Furthermore, such a grand scale transformation requires a vast amount of investment which can jeopardize managerial operations of the facilities. 90% of patients currently under hospital care are against the new plan Many patients will fall into difficult situations Anxiety is spreading throughout patients currently residing in hospitals and hospices. Tokyo Metropolitan Chronic Medicine Association conducted a research last August involving seven hospitals (629 respondents), and its results revealed that 90% of the respondents were against the new plan. To the question, “Is it possible for you to switch to in-home terminal care system with your current medical conditions if your hospital will no longer be available?” 88% responded “no.” The top reasons were the following: Unable to cope with such a drastic change. Living alone, and there are no family members to take care of me. The cost of room and board must be incurred by the patients in the new facilities. If the cost increases, many patients may not be able to find another affordable facility. We may have a large population of patients abandoned from necessary medical care. Visiting physicians for “recuperative” patients must be actively involved with providing terminal medical care Even if this plan was executed in 2018, we will have to wait a few years to be able to see any progress. However, healthcare providers are already starting to cope with this change through education and awareness. Dr. Nagao, JSDD Vice President, whose specialty is in-home terminal care, made the following statement: “Last November, I was invited to one of the major hospital groups with many recuperation beds in western Japan to talk about terminal medical care. I emphasized the importance of physicians being actively involved both in recuperation facilities and the new reorganized facilities. What I found was that self-determination at the end of any patient’s life is a very difficult matter in recuperation facilities. I know that providing in-home terminal care is a tough job, but I realized 13 that providing terminal care for recuperating bed patients is a lot more difficult. What I can do singlehandedly may be limited, but I will do the best I can.” Footnote History of recuperation bedding: In order to separate patients with different levels of medical needs in the same general hospital bedding, the recuperation bedding concept was first applied in 1993. Unfortunately, a problem occurred in which too many patients who no longer required any medical treatments stayed in the system because they did not have any other place to go. This phenomenon became known as “social hospitalization,” and at one point the number of these beds occupied reached 380,000. The 2006 medical reform demolished 130,000 “care-type” bedding out of the total recuperation bedding by 2011. Some patients were switched to long term geriatric health facilities. Although the number of recuperation bedding gradually decreased, some hospitals could not complete the planned transformation by the original deadline due to heavy financial burden. The deadline is now extended to the end of 2017. 14
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