Excerpts fromJapan Society for Dying with Dignity NewsletterNo. 191, October 1, 2023

Main Contents:••••

Change of Presidents - Photo Report
Living Will SquareReport on the Facilitator Training Workshop
From telephone and email medical consultations

Change of Presidents - Photo Report 1
Press Conference on the Change of JSDD’s President & also a Concert byYumiko Samejima in the Foreign Correspondents' Club of Japan – Aug. 3rd
Secretary General of the "Diet" also attended the press conference. YumikoSamejima, a new advisor, enthusiastically sang ten songs.

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On August 3, three days prior to the commemorative lecture by the new President, a press
conference, "Dying with Dignity ---- World and Japan," by the former and new Presidents of theJSDD and a concert by Ms. Yumiko Samejima, a soprano singer who was appointed as a JSDD
advisor in June, were held.
The 140 seats at the Foreign Correspondents' Club of Japan were filled to capacity.
Mr. Hiromi Mitsubayashi, the chairman of the House of Representatives Health, Labor, andWelfare Committee and the secretary-general of the Diet Members Caucus for "Thinking ofRespecting the Will of the Individual at the End of Life," also attended the press conference.

Former President of the Japan Society for Dying with Dignity (JSDD)

Dr. Soichiro Iwao
In his presentation entitled "The History of JSDD in the International
Community," Dr. Iwao explained about the Japan Society for Dying
with Dignity's activities over the past 47 years in detail and in an easyto-understand manner, making full use of slides during his talk.

Chairman, Health, Labor and Welfare Committee, House ofRepresentatives

Dr. Hiromi Mitsubayashi
I have worked as a doctor at a university hospital for many years. I
would like to work in a bipartisan manner toward the legislation ofdeath with dignity based on the confirmation of the patient's will in a"life meeting" by utilizing the knowledge of terminal care I haveexperienced there.

New President of the Japan Society for Dying with Dignity (JSDD)
Dr. Yoshihiro Kitamura
I would like to work toward the legislation. Now, every week on theradio, a celebrity speaks passionately about his/her “departure”. You
can also watch it on our website. Please take a look.

2Yumiko Samejima’s concert held following the press conference.

She sang about ten songs, including "Omoigo," a lullaby composed by Empress Michiko, and“Hymn of Love”, “Lily Marlene”, “My Way”, “Like a Stream of Rivers,” and others. Finally,with copies of the "Songs of the Four Seasons" from the bulletin in hand, everyone sang thelyrics from the song "Furusato" in unison, "Usagi oishi kano yama 🎶〜" (“The mountain
where I chased rabbits 🎶〜”)

Change of Presidents - Photo Report 2
Commemorative Lecture concerning the change Presidents in Ito
Hall in the University of Tokyo Aug. 6thAlong with the change of Presidents, the 47-year history of the Japan Society for Dying withDignity was discussed, and the various issues and challenges surrounding end-of-life care in
Japan. Also, future prospects of the JSDD were explored.
After a short break, we welcomed Ms. Akiko Nishina, an actress, who was interviewed by Mr.
Hiroki Ando, a freelance announcer.
Ms. Akiko Nishina talked about her repeated battles with cancer, how her feelings changed overtime, and what she thinks about now in retrospect. Dr. Yoshihiro Kitamura joined her inanswering simple questions about dying with dignity.

3Dr. Yoshihiro Kitamura
JSDD President“The basic principle is "You decide your departure."(Dr. Kitamura)With the advent of the multi-lethal society, there is a
growing interest in end-of-life care.
The basic principle of end-of-life care is not to "leaveit to the medical group" but to "decide on yourdeparture by yourself.” It is not a "set course," like a
restaurant, but an a la carte order. To do this, wemust write the Living Will. We will support everyone
at the end of life and work to make it legal.

From left to right:
Dr. Kitamura, Ms. Nishina, and theMC, Mr. Ando.

Ms. Akiko Nishina
Actress"It was a repetition of being aware of death andforgetting it.”(Ms. Nishina)
I am now 70 years old and have had four cancer
surgeries, including cervical cancer at 38 and coloncancer at 60. Each time, I was aware of death, forgot
about it, and became aware of it all over again. Now,I would like you to see me off with a round of
applause at the end of my life.

Dr. Soichiro Iwao,
Former President of JSDD
Currently: Honorary Chairman
Dr. Iwao: “What remains is the legalization of death withdignity.”Over the past decade or so, as the President of JSDD, I have been
actively involved in the organization as a public interest
incorporated Society, revising the Living Will, reviewing secretariat
functions such as membership management, and strengthening
research, surveys, and public relations activities.
What remains is the legalization of death with dignity.
It is a step-by-step process, but I hope we will progress toward itsrealization.
4Members’ Voices
We have the same thoughts; our friends are allover the country!

Until my husband is coming to pick me up
Ms. Tokuko Shintani, Age 91, Tokyo
It has been eight years since I lost my husband, who was one year older than me. Five years
earlier, my husband was diagnosed with prostate cancer, but after surgery, he made a fullrecovery. After that, he went to the hospital for chronic heart failure, back pain, etc., but there
were no major problems in his daily life, and the two of us enjoyed occasional overnight trips
together. However, his appetite gradually decreased, so we went to the hospital and listened tohis doctor's diagnosis of his present medical condition.
At the suggestion by the doctor that he should be admitted to the hospital for tests for a while tosee how he was doing. My husband, who had been sitting with his head down, suddenly looked
up and crossed his hands to make a cross with a loud voice said, "No gastrostomy, no lifeprolonging measures," and then he said "No." I was just stunned. After a moment, the attending
doctor nodded his head and said, "I understand.
My husband was then hospitalized. I visited him daily, and my husband accepted me calmly as I
talked one-sidedly to him. On a night, about ten days after he was hospitalized, someone heard anoise in his room, and the person on duty rushed over to see if he had dropped his cell phone.
When the person on duty picked it up, handed it to him, and asked him who he was calling, hereplied, "My wife," and fell asleep with the phone still in his hand. I was unaware that he wastrying to call me even though I always had my phone by my side. What was my husband trying
to tell me...? My husband departed peacefully two days later, with my sister and I watching overhim. Against my husband's wishes, I blamed myself for not asking for life-prolonging measures.
My husband was a teacher, and we were not blessed with children.
After my husband passed away, I was sorting through his belongings and found a notarized will.
Looking through his notarized will, I found a section where he expressed his gratitude to me. Icried, thinking that he had never shown even the slightest sign of such appreciation.
I have been hospitalized and operated on repeatedly since then, and I am now living in a facility
with the support of others, learning from my husband and thinking about how my life shouldend. About four years ago, I joined the Japan Society for Dying with Dignity after learning of its
existence, and I am now waiting for my husband to come for me with peace of mind.

5Building a Rainbow-Colored Bridge!
Ms. Junko Ito, Age76, Shizuoka Prefecture
From what place does my husband, who passed away five years ago, watch over me? A meadow
with a fresh breeze, a hill overlooking the sea, or a star shining secretly…. I put my hands
together with my thoughts on the image of the deceased. But I cannot draw a map to the place
where my husband rests.
It seems to me that there is a difference between climbing the stairs to heaven and crossing theRiver of Sanzu. I have to ensure that I don't get stuck in a maze in which I might get stuck. Myhusband, after all, is the only one who can help me with my lack of sense of direction. So, I
decided to make one last request to him. "Please build me a bridge across the dawn sky, arainbow-colored arch bridge!"
As a civil engineer who has worked on many large bridges and roads, I am sure you will makemy wish come true. I will find my husband waiting for me on the other side of the bridge, and I
can amble along slowly to be with him. Like my husband, who met a peaceful end with thequintessence of the JSDD as his foundation, I want to retreat from the fear and anxiety of death.
It is not wrong to draw such a childish fantasy.

Until I hear my husband's voice saying, "A bridge has been built!" I will cherish each day andwelcome the end of my life.
To my wife, who died with dignity
Mr. Akira Sugino, Age 89, Kanagawa Prefecture6

My wife, who had been suffering from malignant lymphoma since last year, died with dignity inJune. The doctor at the hospital where she was staying had told her that "there is a possibility ofremission if chemotherapy and radiotherapy are exhausted, but it is difficult to cure the disease
completely." Without a word of advice, she came home from the hospital saying, "There is noneed for life-prolonging treatment, only palliative care. Less than a year later….
My wife's local family doctor refused to see her because he said "Doctors are supposed to treat
patients, and there is no medical insurance to care for patients who refuse treatment and say theywant to die well.” She started using potent narcotic drugs in April, and I had to bring my wife tothe hospital every week.
As her disease progressed, she developed dementia, and I could not take care of her at all, so thecommunity care manager arranged for her to receive home nursing care and home medical care.
Incidentally, even though it was their job, I learned a lot from the strict but gentle care provided
by the visiting nurses.
I took care of her until the end of her life, as she chose to die with dignity, saying, "This is myaesthetics of life." and in accordance with her dying wish, I completed her burial in a tree. I am
consoled that I have finally fulfilled my responsibility. In closing, I would like to add a few
words of farewell from my wife.
“After all this time, I realized the beauty of a cherry blossom on the Earth.”By Eiko

Living Will Facilitator Training Workshop in Saga
Deepen exchanges with people from other professions in a camp format.
74 people participated in the first event held in three years.

The Living Will Facilitator Training Seminar was held in Tosu City, Saga
Prefecture, from July 22nd (Sat.) to 23rd (Sun.) It had been three years
since the outbreak of the Corona Disaster, but the workshop was a great
success with 74 participants, including the instructors, and was filled withenthusiasm.
What is the purpose of this training
Lecture by Dr.
Haruhiko Miura.
The attendees
were in anatmosphere
where they did
not want to missa single word.

①To learn the latest information on decision support and deepen
your thinking and facilitator learning about the relationship between The
Living Will and ACP (Advance Care Planning and Life Conference.)② To definition of the Japanese ACP and explanation of the action
guidelines.
③ To experience ACP group work with "The Living Will" and "MyStatement of Preferences Form," as revised in November 2022.
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To learn the principles of clinical ethics that are essential for performing ACP.
⑤ To learn about clinical ethics and how to proceed with ACP regarding discussions
concerning the discontinuation of dialysis and non-initiation and withdrawal ofventilators for amyotrophic lateral sclerosis (ALS.)⑥ To experience consensus-building through dialogue with a wide variety of people
from various professions.
⑦ It was a wide-ranging project to build trust and networks between associations andprofessionals through exchanges between medical, nursing, and welfare professionals
working in home health care, primary care, and palliative care settings, and a diverse
group of people, including religious leaders and intellectuals.

Group work with a variety of instructors
Lecturers are:
Mr. Masayoshi Egoshi (Egoshi Law Office),
Dr. Makoto Eriguchi (Head of Neurology, Saga-Ken Medical Center Koseikan),
Dr. Sumiko Kanegae (Hiramatsu Hospital Hiramatsu Clinic Home Healthcare Department),
Dr. Kazuhiro Nagao (Vice President of the Japan Society for Dying with Dignity),
Ms. Keiko Narisada RN (Director of Nursing and Community Relations, Yukenkai Kimura
Hospital),Dr. Yasuyoshi Ninosaka (Ninosaka Clinic),
Dr. Haruhiko Miura (Professor, Iwate University of Health and Medical Sciences), andDr. Satoru Mitsuoka (Director of Japan Society for Dying with Dignity, President of Kyushu
Chapter, President of Saga)
The first day was a classroom lecture, and the second was a group work session with sevenpeople in a group, for ten groups. It was a valuable experience for the participants to deepen their
meaningful learning over the two days. The camp-style training program helped us to strengthen
our bonds as colleagues who share the same interests, and we all look forward to our reunion
next year.
(Ms. Masako Eto, writing)✳️ A facilitator is a person who takes a neutral position and is responsible for bringing together
the participants' opinions in a meeting and guiding them to a better conclusion.

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The attendees listen attentively to thelecture.

Dr. Masahiro Deguchi of Nagasaki Prefecture
presented a group work session. He concludes his
presentation with the words, "Is there any love there?"and ends with a stunning performance.

telephone and email medical
consultations“I want to spend my last days at home.
I need home medical care….”
I want to face my final days at the home where I used to live, but what should I do? What are theprocedures and costs? We receive many such questions from the elderly. In this issue, we focus
on consultation about home medical care.
[Case Study]
I have lived alone since my husband passed away several years ago. I have been doing my best
until now at the age of 86, but recently, I get tired easily, and my legs and back have become
weak, making it difficult for me to go out. Depending on the day, I am in and out of bed. I havebeen visiting the hospital for high blood pressure and abnormal fat metabolism, but even thesevisits are becoming difficult for me to manage on my own.
9Q. I would like to spend my final days at home, where I have fond memories of myhusband.
A. If it becomes difficult for you to go to the hospital alone, you can receive home medical care.

Q. Please tell me what home medical care is.
A. Home medical (home visiting) care is for people who need continuous medical care. Doctors
and nurses visit the patient's home regularly based on a predetermined schedule and provide
treatment, prescriptions for medicines, and tests, just as if the patient were going to the hospital.
Visits are not limited to your home but can also be made to your group home or senior citizens'home. When care is needed, doctors, nurses, lawyers, rehabilitation specialists, pharmacists,
nutritionists, and other professionals will each work together to provide support and help youlive your life as you would while recuperating at home.
Q. How can I find a hospital that can provide home medical care?
A. Consult with your current doctor, nurse, medical welfare (social worker) at the hospital's
consultation office, care manager, or the comprehensive support center or welfare department for
the elderly in your municipality. Alternatively, you can consult directly with a nearby medical
institution that you are considering using.
Q. How do I go about the procedure?
A. First of all, you need to be convinced.
① Before you begin, you should meet with the home health care agency to confirm your wishes
and medical policy and verify costs and emergency response.
② If you are satisfied with the service, you can apply for an application. Required documents
include: a "medical information form from your family doctor," "medical insurance card," and"nursing-care insurance card.”③ Finally, you will inform the doctor or nurse of the date you wish to receive medical care, andthe date and the time will be adjusted. A doctor or nurse will visit your home regularly on thefixed date and time to provide medical care.
Q. What should I do if I suddenly have a fever, for example?
A. Many home healthcare facilities also provide house calls. House calls are irregular medical
services provided at the patient's or family's request. It is advisable to consult with the doctor
beforehand about handling sudden fevers, sudden changes in medical conditions, andemergencies.
Q. How much does it cost for home medical care?
A. Medical insurance is available. The coinsurance payment is about 10-30%, depending on theindividual's income and age. The cost of medications when they are provided and the cost ofnursing care insurance when used are extra. If the monthly coinsurance payment exceeds a10

certain amount, you can apply for a "high-cost medical care reimbursement" to return the copayment.
Q. Is palliative care also available?
A. Palliative care is designed to relieve pain associated with the progression of cancer and avariety of other conditions, such as back pain. Listening and consultations are also part ofpalliative care. Since home care is provided in the usual setting, consulting with a doctor or other
health care provider is easier. You should let your doctor and others know your thoughts andwishes in advance.
Q. Can I receive end-of-life care at home?
A. Many places now offer Advance Care Planning (ACP) based on your living will.
The ACP is to discuss and share your wishes for medical treatment and care with your family
and medical care providers in advance in case you can no longer communicate your wishes.
Home healthcare provides a team of support to fulfill your wish to spend your final days in the
comfort of your own home where you used to live as you wish.
If you can live at home as you usually do, you will feel stable and maintain your QOL (qualityof life.) Consultation for home medical care is available from the time you think about
recuperating at home, not after you become bedridden. An increasing number of places offer
various services to those who wish to receive home medical care. Why not start using aconsultation service such as a local comprehensive support center to gather information rather
than struggling alone?

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