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Excerpts from

Japan Society for Dying with Dignity Newsletter No. 171, October 1, 2018

Main Contents:

LW Facilitator Training Workshop Session #2 Report ------------------- 1

LW Study Workshop Session #7 -------------------------------------------- 4

LW Supporting Physician System Prospect --------------------------------6

Learning the fundamentals of terminal stage and end of life theme and

exchanging opinions

The two day training workshop was held on July 15-16 in Takeo City, Saga Prefecture. About

60 attendees openly exchanged their opinions. Dr. Satoru Mitsuoka, the President of Saga

Chapter and Director of JSDD headquarters, and Mr. Yutaka Shirahige, the President of

Nagasaki Chapter, organized this session as well as the previous session.

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Pictures:

Front: participants attentively

listening to a group presentation.

Left: Dr. Koichiro Itai explaining his

presentation.

The purpose of this training

workshop was to accomplish the

following:

1) deepen one’s knowledge and

understanding of the LW by sharing

new information regarding support for self-determination and enlighten and promote the concept

of LW as a helper or an assistant;

2) learn optimal techniques to enlighten and promote the concept of the LW through various

activities;

3) learn more about the sense of happiness and the perception of life and death which one must

always remember when talking about the final stage of life;

4) experience the development of consensus through diversity and dialogue.

This workshop was held in a unique dormitory-like environment to induce an intimate and

friendly atmosphere which facilitates the participants to work closely together as a team and

openly exchange opinions. This method of training seemed to work well, as reflected in the

number of participants from the previous session coming back for this training. About half of

the 60 participants were medical doctors who support their local community medical care, and

the rest consisted of nurses, pharmacists, health care managers, lawyers and Buddhist priests.

Day One

Table talk and workshop

1) The current status of support on self-determination (Mr. Yutaka Shirahige, President of

Nagasaki Chapter)

2) How to proceed with the support of self-determination and how to speak to an audience to

leave a powerful impression (Dr. Koichiro Itai, Professor from Miyazaki University School of

Medicine)

3) Effective ways to lecture with the purpose of promoting the concept of the LW (Dr. Kazuhiro

Nagao, Vice President of JSDD)

4) Workshop “Adventure trip to death” (Dr. Satoru Mitsuoka, Director of JSDD)

Day Two

Group Work

1) Effective ways to communicate the concepts of the LW and ACP (advance care planning)

2) How to support decision making for patients who are unable to express their wishes

Lecturing techniques that will draw the audience’s attention

On day one in his lecture, Mr. Shirahige explained in detail the fundamental facts regarding the

LW, AD (advance directive) and ACP (advance care planning) and guidelines by the ministry of

health, labor and welfare. He then put them in perspective by describing how they were used in

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an actual medical setting. The fact that he used a wide range of views and perspectives was very

well understood by the audience.

The next lecture was by Dr. Itai, who discussed the topic of clinical ethics. It is not an easy topic,

but a very delicate one. Nonetheless, his explanation was easy to understand as he used real

examples that could easy occur in your everyday life. He emphasized that this is an area in

which the relationship between the healthcare providers and the patients (and their families) must

deepen in order to become the core of the patients’ self-determination. Dr. Itai’s ability to talk

about a very serious topic nonchalantly was an attractive technique in gravitating his audience.

Dr. Nagao emphasized three key points of a successful lecture: 1) keep a consistent, upbeat

rhythm or tempo 2) pass on your true experience directly to your audience without adding any

fluff and 3) tell a story that captures your audience. He said that from his experience of traveling

all over the country lecturing different audiences, he learned that to draw the attention of an

audience, it helps a lot to catch them by surprise, find something they can relate to, and use some

trendy expressions and topics from time to time.

The last part of day one was Dr. Mitsuoka’s lecture and workshop reviewing the importance of

the topics, terminal medical care, end of life ethics, self-determination and the living will.

Workshops in general tend to increase partial knowledge rather than comprehensive one, and are

often limited to theories which can be unpractical. This workshop on the contrary, focused on

the general theme of “end of life,” and urged participants to include feelings and sensations

through sharing their own experiences which made it highly valuable and unobtainable by any

other means.

To benefit many

others... The group exercise on

day two started with the

group divided into teams

of six, three males and

three females in each

with different

professional backgrounds.

Through open

discussions, they came

up with very valuable

and interesting exchange of opinions and consensus formation.

When we have discussions with people with similar backgrounds and occupations, we tend to

reach similar conclusions; however, when we group together people of very different

backgrounds for discussions, especially when the topic benefits many others, interesting ideas

arise. It was quite interesting to watch the process of people of different professions brainstorm

their academic and integral proposals, one after another. We realized that our learning became

much deeper and more profound as we listened and exchanged our respective knowledge and

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expertise among the professionals, as opposed to relying solely on your own knowledge. It was

quite an invaluable event which was well worth the time and money.

When I asked a doctor who attended the event if he would come back next year, he said,

“Absolutely. I’ll bring our young staff from the hospital next year.”

Reported by Ms. Masako Eto (JSDD Public Relations and Projects)

Learning the fundamentals of terminal stage and end of life theme and

exchanging opinions

Palliative sedation:

Is it necessary to eliminate terminal stage pain and suffering?

Picture: Endless questions during the panel discussion

The 7th

session of Living Will Study Workshop was held on June 23rd

at Tokyo University Ito

International Research Center with an audience of about 400 people. The hall was full, and some

people were standing with enthusiasm to watch and listen to the topic being discussed,

“Palliative Sedation: Is it necessary to eliminate terminal stage pain and suffering?”

The first topic was introduced by JSDD President, Dr. Soichiro Iwao. He stated that palliative

sedation is a legitimate medical treatment to alleviate the pain of terminal cancer patients, but

possibly because of its association with death, it’s a topic people avoid to discuss openly. It is

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time to make it an open topic, not a taboo. This topic was selected for today’s session because it

is in demand to be the topic of discussion.

JSDD Director, Dr. Satoru Mitsuoka who also owns a clinic in Saga city, presided as the

facilitator during the speech session and panel discussion as he did previously.

The first speech titled, “The definition of sedation and introduction of two sick condition cases”

was discussed by Dr. Tatsuya Morita who explained that the definition of sedation is to alleviate

pain by reducing the level of consciousness when there is no alternative, and emphasized that

this is the very last resort in this situation.

Participation by Cancer Surviving Family Support Group members The next speech was by Professor Kaoruko Aida of Tokyo University, who talked about her

experiences when she was attending Harvard University School of Medicine on a fellowship

program in medical ethics. She discussed the reasons behind allowing sedation and where the

line is drawn between sedation and death with dignity. Later, Dr. Akio Yamazaki of Care Town

Kodaira Clinic in Tokyo joined the discussion and introduced some real cases.

The second part was the panel discussion. JSDD Vice President, Dr. Nagao, talked about the

following topics below while showing videos, joined by Mr. Sadahiko Nakano representing a

cancer survivor family support group called the “Blue Sky Organization:” 1) Criteria for

deciding whether or not sedation is necessary using example cases; 2) Differences in the

effectiveness of sedation depending on the facility the medical care is being provided; 3) How to

measure levels of pain and determine what is considered “unbearable” pain; 4) The meaning of

wishing to die in their sleep, etc.

Picture: A full, attentive audience. Many were seen taking copious notes.

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“Three months have passed since I personally experienced unforgettable,

powerful emotions, and now peaceful time is elapsing.”

Three months have passed since my training experience in the Kubler-Ross workshop (reported

in the last newsletter #170 published in July). On August 5th

, FRIENDS’ Meeting was held in

Saitama Prefecture. Those who participated in the Kubler-Ross workshop are calling themselves

FRIENDS, and are meeting several times a year for the purpose of refreshing their dialogue

between them and the workshop staff, in a forum called the FRIENDS’ Meeting. Since I was

interested in this reunion with people I met during the last workshop session to see how they

changed in terms of mental and physical conditions, I decided to participate in this meeting.

Three “FRIENDS” who recently participated in the May workshop were introduced to nine other

FRIENDS over lunch, which created an amicable and friendly atmosphere to start the meeting.

The scope of FRIENDS’ activities is very diverse. Some FRIENDS give lectures outside of their

professional job to educate the public with the right pharmaceutical knowledge and volunteer in

various activities to support the victims of natural disasters. Another FRIEND specialized in

communication methods as part of therapeutic care for dementia patients. The location of this

meeting was actually a FRIEND’s deceased parents’ house which was donated as a social

meeting house for local children.

Watching them talk about change of heart was very impressionable

During this session, we discussed the topic of “self-esteem” with

the help of slides. The FRIEND leading the workshop was a veteran

FRIEND who had been there since the beginning of the workshop.

He started by talking about his own experience of having a low

self-esteem.

One FRIEND who participated in the previous workshop said, “I

always set myself aside and take care of others first, but I now

realize that I can place my own needs above some others. I still felt

unsure, but I wanted a job that made me feel satisfied, so I switched jobs. Another FRIEND said

“I frequently recall what my mother used to say which makes me feel like I am protected and

assured. When I hear now from my brother and other friends that she used to worry about me a

lot while she praised me. I find myself accepting my mother more genuinely and openly.”

During my Kubler-Ross workshop session, I experienced some powerful emotions that shook me

vigorously, but this gathering of FRIENDS gave me a serene, peaceful and comfortable feeling.

As a JSDD phone consultant, I was so pleased when one caller told me that she could talk to me

about everything related to death, something about which she could not even talk to her very

close friends. I hope everyone will utilize the JSDD medical consultation with ease and comfort.

Reported by Ms. Chihoko Hirabayashi, JSDD telephone medical consultant

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Report and interview:

The Struggle of Dr. Yoshiro Suzuki (63) who supports his local community medical system

along with in-home medical care with the attitude, “I stand by my patients.” His motto has

been “Patients First” ever since he transitioned from being a pharmacist to a physician. He

is pushing against the wave of an increasing elderly population by closely collaborating

with his local community.

Picture: Dr. Yoshiro Suzuki on the computer at his clinic. He appears to be a nice, easy going

guy, but when it comes to medicine, he has a wide range of perspectives and sharp insight,

according to his colleagues.

Terminal medical care is not necessarily only for the elderly. Sometimes, he has to take care of

terminally ill young patients. He told us about one unforgettable case deeply inscribed in his

heart.

Mr. S (38 years old) was a patient who was referred to me from a local hospital. He was lying in

bed with his eyes wide open, expressing pain and suffering in a dark room. He was diagnosed

with terminal stage of stomach cancer. He said, “I’d like to ask for one thing.” When I asked

him what it was, he said “I want to live to see my youngest son turn one.”

He had edema all over his body, ascites, and hydrocele which made his scrotum ten times bigger.

His doctor seemed to have given up on him, and he seemed to have lost his trust in doctors.

Dr. Suzuki told him, “I can’t cure your illness, but I will definitely improve your painful

condition."

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When asked “It takes a tremendous amount of courage as a doctor to tell the patient face-to-face

that you can’t cure his illness. How do you deal with it?” his reply was “Yes, but he was a non-

believer of medical care, so I thought it was important to eliminate that distrust first.” He

administered albumin to regulate his urination and improve his hydrocele and ascites conditions,

which finally enabled him to carry on a normal conversation. He started to smile. His wife was

a nurse, and obviously her devotional care had a tremendous impact.

Even when there is no cure, pain can be reduced to a reasonable level. That improves the quality

of life for both the patient and his family. “I felt strongly that this was what it means to stand by

the patient.” The patient died while receiving Dr. Suzuki’s terminal care, only a few days before

his youngest son’s first birthday.

Determined to become a doctor after being a pharmacist

Picture: His clinic is located in a busy

commercial street near Hiyoshi Station of

Toyoko Line where a lot of college students live

and hang out.

Among his colleagues, he has a high reputation

of being down to earth and exceptionally

approachable by his patients. He is a great role

model of what a primary doctor or a home doctor

should be.

However, his road to become a physician was

not an easy one. After graduating from high

school, he went straight to pharmaceutical

college and immediately started working at a hospital as a pharmacist.

What he found was that his work was treated as a sub-contractor of nurses and much lower in

status compared to physicians. He made a life time commitment by resigning from three and a

half years of hospital work, and started hitting the books hard to become a medical doctor.

When I asked him if he developed a strong feeling against job bias and status quo, he responded,

“After becoming a pharmacist, my strong determination was spawned. In those days, my

impression was that the majority of doctors were focused on pleasing the school from which they

graduated or their superiors instead of their patients whom they were supposed to assist.”

A year and a half later he successfully passed the entrance examination to Saga Medical College,

now called Saga University School of Medicine. He moved from Yokohama to Saga, Kyushu

with his three children and wife. He had to work a side job as a tutor and a pharmaceutical part

time job for six years when he finally graduated from medical school.

Dr. Suzuki moved back to Yokohama and took an internship. The wage was not enough to make

a living, so he had to take a night shifts in hospitals to supplement his income. Many patients

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now make comments about him: “Since he is also a pharmacist, I feel more comfortable about

his choice of prescriptions.” “He is very familiar with the latest studies of medicine, and he is a

very hard worker above all.”

He takes the same stance as JSDD about how to treat incurable, terminally ill

patients

His clinic is located on the second and third floors of a building near Keio University by Hiyoshi

Station of Toyoko Line. It is only one minute walk from the next station, which is crowded and

full of retail stores. He opened his clinic 23 years ago. Three years later, he started a visiting

nurse station. His in-home medical care is rapidly growing and expanding. For the last several

years, he has taken care of 20 to 30 terminally ill patients a year, and the number is increasing

year after year. His emphasis has always been primary health care and in-home care from the

beginning. He speaks passionately that he wants to overcome the challenges of a progressively

elderly society by closely collaborating with local hospitals, clinics and other health care

facilities.

One of his clinic’s primary missions is to identify the needs of the patients precisely and

implement them immediately. His “Patients First” motto has never changed from the time when

he first became a pharmacist and through his journey to become a medical doctor. “I’m

committed to stand by my patients every single day. I try to show it every day to remind myself

to never forget it.”

Two years ago, I was introduced to the JSDD LW supporting physicians program by a healthcare

manager. I found out that I share the same view towards the treatment of incurable, terminally ill

patients, so I registered to become a part of it. We must accurately identify the wishes of

terminally ill patients with the help of their families, and help prepare and implement their

wishes with respect and dignity. I was immensely impressed by his firm conviction of “Patients

First” attitude, which he will never relinquish.

Reported by Mr. Takeshi Gunji, JSDD Editing Department