Excerpts fromJapan Society for Dying with Dignity NewsletterNo. 189, April 1, 2023•

Main Contents:
Results of the 2022 “Surviving Family Members’ Questionnaire”•
Medical consultations by phone and email

Results of the 2022 survey of surviving families
95 percent of the respondents reported that Living Will was helpful.
1Every year JSDD conducts an annual survey to the surviving families of deceased
members to determine if our Living Will was honored by medical professionals.
The results from last year's survey are as follows. JSDD will listen to these various
voices and make use of them in future promotional activities.
98% of the respondents listened to Living Will on a regular basis.
In the 2022 Survivors' Questionnaire, we received many comments on the gap in knowledge of
the Living Will among medical professionals and their desire to provide grief care for theremaining family members. Many doctors, who are officers of the Japan Society for Dying with
Dignity’s headquarters and branches, have been enthusiastically communicating the significanceand importance of the Living Will to medical professionals at lectures and medical education
events in the region. However, it seems that this is still insufficient. However, it is also true thatlittle by little, through such steady efforts, an environment that agrees with the Society’s aims
and respect for the Living Will is spreading.
Many of the canvasses we have received strongly show that even when a departed person has
achieved the dignified end that they had wished for, the remaining family members still feel asense of satisfaction and pride, sadness, and regret. We recommend the Japan Society for Dying
with Dignity’s Small Lighthouse Project website. This is a healing site where like-mindedfriends can share their experiences and thoughts, support each other, and also help in terms ofpeer support (parties and occasions of the same suffering supporting each other.)
In 2022, 669 people responded to the survey: 557 (83%) presented the Living Will to theirhealthcare provider, 72% thought the Living Will was well accepted, and 23% thought it was
rather well accepted. 95% of surviving families felt that the Living Will was practical.
The graph below shows their answers when asked what the Living Will meant to their families.
We also want to express our deepest gratitude to those who took the time to complete the survey
in their time of profound grief.

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636 People

Numbers of People

Numbers of People

4Followings are the received comments from the surviving family members.
“As a member, I was able to smoothly communicate my mother's wishes in various phases ofthe process. “I said “Thank you” to my membership card for watching over my mother, 92, herdaughter, and me, for a long time.” (Kanagawa Prefecture)“Decisions came suddenly and required a quick decision. However, my mother, aged 86,
joined the Japan Society for Dying with Dignity to reduce our family's regrets and sadness.”(Fukuoka)“Although I have regrets about the loss of my mother (93 years old) and what I should havedone, the relief and satisfaction of fulfilling her wishes is a source of great pride. The fact thatmy loved one passed away with satisfaction gave those left behind the courage and hope to go
on and gave me the opportunity to think about my own final days without fear.” (Akita)“It helped me to communicate my aunt's (96 years old) wishes. This is especially necessary inthe case of institutionalisation. Being a member of the JSDD gave me the opportunity to talkwith my aunt on a regular basis about what she would like to see happen, and it also helped me
to gain an understanding of the home visiting doctor and the contract doctor at the facility.”(Tokyo)“My mother (86 years old) had seen her own mother's last days about 40 years ago when she
was kept alive on a ventilator without consciousness and gradually began to necrosis here andthere, and she said she wanted to avoid that. At that time, I found out about the Japan Society
5for Dying with Dignity (JSDD) and joined, and told them about my mother's wish to eat by using
her mouth until the end of her life and her wish to die at home at the end of her life, but in theend, I could not fulfill either of her desires.” “In the last years of my mother's life, I had told thedoctors about her Living Will, so when we discussed her treatment and recuperation policy, thedoctors would come up with a policy in line with her wishes. Still, I felt paranoid, as if I wasbeing led towards terminating her treatment early. I was scared that one of our decisions could
cause my mother to suffer or even determine the end of her life. I had talked with my motherabout deciding what she wanted to do at the end of her life, but when it came down to it, it
wasn't as simple as that, and it was as difficult as if we hadn't decided anything at all.” (Tokyo)“I took care of my mother (101 years old) at home. The years of reading articles and memoirs
in the Japan Society for Dying with Dignity newsletter and practicing and preparing myself for
end-of-life care were important and necessary. Now it is our turn. I don't know what will
happen now, but I would like to become a life member and repeatedly build up my knowledgeof how to face the coming death by reading the JSDD newsletter and other information and use
them as references.” (Hiroshima)“When I, an administrative secretary, was appointed guardian of a person. A card and a Living
Will were found in the person's (85 years old) belongings. I presented it whenever I was notifiedof the person having cancer at the palliative care place or the emergency transport place; thedoctors understood completely. It was helpful for both the guardian and the person
themselves, as no facility would give medical consent concerning a person without relatives.”(Kanagawa)“My husband (87 years old) was able to enjoy his senior years fully, perhaps because he had
the security of being a member of the Japan Society for Dying with Dignity (JSDD).” (Chiba)“The farewell to my husband (88 years old) was painful and sad, but his chosen end wasadmired by the younger generation, who saw him off with loud applause and cheers.” (Tokyo)“We discussed how we should live our final days and joined the Japan Society for Dying with
Dignity together. Three weeks after our golden wedding anniversary, my husband (80 years old)collapsed from aspiration pneumonia, and the doctor asked him, “What are you going to do?" I
was surprised when he asked me, “Your husband was talking about this!” I immediately
understood, told him about the Japan Society for Dying with Dignity, showed him my husband’ssignature for refusal of life-prolonging measures, and asked him to do nothing and wait for aquiet departure. We were able to spend 20 peaceful days before he passed away.” (Tokyo)“When my father (89 years old) was first admitted to the emergency department, he received
antibiotics and intravenous fluids. Still, his condition gradually deteriorated with no signs ofrecovery. As a family member who saw him frowning and suffering during regular phlegm
suctioning, we felt strongly that we did not want him to go through that anymore.
From the time of admission, we informed them of the JSDD Living Will and asked the doctor in
charge to let him have a peaceful end. The doctor was receptive to my wishes, and I was able to6see my father die peacefully and with no regrets. I have told my relatives and acquaintances
about our experiences concerning the Society's Living Will, but unfortunately, they have not yet
decided to join.” (Aichi Prefecture)“My father (91 years old), after his family informed the doctor of his wish for dying with
dignity on his behalf, my father said, “Don’t think that you let me die. Don't even think that I
might have wanted to live longer.” He said that he wanted to die with dignity, and that is why
he joined.” (Tokyo)“When my mother (91 years old) was admitted to an elderly care facility, despite her having a
Living Will, it was highly stressful to be asked again and again to confirm her and her family's
wishes.” (Osaka)“I knew the term “dying with dignity” but did not know such a society existed. I don't know
how my elderly aunt (89 years old) found out about the Japan Society for Dying with Dignity
and made the decision to join, and I am impressed. I wish more people had the opportunity toknow about the Society.” (Hokkaido)“In my house, we have kept the JSDD newsletter for several years, and they have been
beneficial. I read through all the back editions when I had to decide on my mother's (91 years
old) future plans. It was a very reassuring connection because it was multi-faceted andcontained a variety of authentic voices and information.” (Ehime)“A Living Will allows me to pass away with a peace of mind.” (Tokyo)’“Because my mother (81 years old) was a member, we were able to smoothly communicate
her wishes in various situations, such as emergency hospitalisation and admission to an elderly
care facility after her discharge from the former. When her health deteriorated at the facility, it
helped us to make the decision to ask her to be cared for in her room at the facility instead ofbeing transferred back to hospital.” (Miyagi)“When my husband (94 years old) was admitted to hospital, I presented my Japan Society for
Dying with Dignity membership card, and they immediately understood. During the last days of
the Covid-19 Disaster, they warmly supported my husband and me by enabling us to exchange
diaries, bring him delicacies, and talk on the phone. My husband's own phrase: “The last pen iscomplete, and I wanted to write it, the winter galaxy.” Saying goodbye to my companion is theultimate in sadness, but I am protected by my husband's spirit and supported by my friends. In
my husband's departure note, which I found later, he wrote: “It was a happy life.”“I am now explaining the Japan Society for Dying with Dignity to my friends.” (Hokkaido)“In 2017, my father, who had been suffering from repeated intestinal torsion, had a hole in his
intestine, and the doctor told him he had 20 minutes to decide whether to have an operation ornot. He was told that if he did not have the operation, he would die in about three days, so heasked for the operation. It was a major operation for a man over 90 years old, but somehow it
was successful, and he was fitted with a colostomy. After the operation, he seemed to be in a7

lot of pain, and my father, who was very patient, repeatedly said he wanted to die, so I
wondered whether the operation a good idea. From this experience, my mother felt that it was
too much to ask her family to make such a decision in such a short time, so she joined the Japan
Society for Dying with Dignity. At the end of her life (90 years old), both the doctors and thefacility accepted her wishes, and she was able to leave peacefully.” (Kanagawa)“My father's mother was operated on for gastric banding even though she was unconsciousand lived for ten years. My father's sister, who was forced to care for her, had a difficult time.
Knowing this, my father (81 years old) said, “Don't prolong my life.” He always told us. “Don't
prolong our lives because my wife and I feel the same way, so remember that.” At the end of
his life, he entered a hospice and said, “I will die on 1 March, so thank you for all you have done
for me”. The whole family is grateful to the hospice for protecting my father's dignity.” (Tokyo)“Regarding the final days of my father (85 years old), both he and our family had always said
that they wanted to avoid life-prolonging measures but, when it came down to it, my sister, herhusband, and my mother had different opinions than me concerning my father. My mother, mysister, and her husband said, “Telling my father about his condition will discourage him fromtrying to live longer. My mother said, “It's okay to let the hospital take care of him. He would behappier if he didn't know anything about it.” I thought there was nothing crueler thanprolonging his life in a situation from which he would not recover, so I finally persuaded themto respect my father's wishes.” (Mie)“When my father (96 years old) passed away, I kept thinking about whether our way of caring
for him was good or not. My mother also suffered from dementia, so those of us who lived
outside of the prefecture, took turns going to my parent's house to take care of her. With thesupport of the local community, we took care of her, but my father, who had always been
patient and calm, said many times, “I am tired of it. In reality, we all have our own lives, and ourwishes do not always coincide.” (Iwate)“My father (95 years old) collapsed on a road and was rushed to hospital, where he died tendays later. He always kept his JSDD membership card with him, so he was able to present it
immediately to the doctor at the hospital, and the doctor understood his wishes.” (Kanagawa)“My parents joined the Japan Society for Dying with Dignity about 18 years ago. When mymother passed away 16 years ago, I presented the Living Will to the doctor, and he said, “I
didn't know this existed. I need to learn more about it”, but by the time of my father's death,they immediately understood. By saying goodbye to my parents, I felt that if they had not been
members, I would not have been able to make the final decision.” (Hiroshima).
“When my sister's (85 years old) health deteriorated, I told the doctor at the local clinic that
she was a member of the Japan Society for Dying with Dignity (JSDD) and that she did not wish
to prolong her life; he gave me the impression that I was mistaking it for a new religion.”(Gunma)8

“In the final days of my wife’s life (77), she had malignant lymphoma and I repeatedly told thedoctors that I wanted to refuse treatment and move her to a palliative ward, but they did not
accept my request.” (Hokkaido)“My wife and I (aged 73) first came across the JSDD’s Living Will when our mother, who had
been brain-dead for about four and a half years, died, and we told a doctor friend of ours how
difficult it was, and he offered us a membership card to the Japan Society for Dying with Dignity
and explained it to us. After hearing the story, my wife and I discussed it with our children andjoined immediately. Five years later, in the middle of the night, my wife suddenly lost
consciousness and was rushed to the emergency department. After tests, we were told that she
had a cerebellar hemorrhage and that even if she underwent surgery, she would not recover
and would probably continue to be brain-dead. The doctor said, “Okay.” I was touched by hiscompassionate response, saying, “Okay, let's just take care of the pain and suffering. Fourteendays later, my wife passed away.” (Fukuoka)“My husband (85 years old) suddenly became ill and was rushed to hospital in the middle ofthe night and presented his membership card to the doctor. The doctor immediately said: “I
understand. We will meet your request. We will give him palliative care from now on. I will
notify the entire medical staff concerning your decisions.” I said, “Thank you for yourunderstanding.” The doctor said, “This is important.” I was relieved when he said, “I will do it
properly.” (Ehime)“While I was looking after and caring for my mother (94 years old), I had to make decisions
quickly, worrying each moment, but after a while, she passed away. I regretted a lot what had
happened afterwards and dwelled on it. This may be the path that end-of-life caregiver will
always follow. I can say that the best guide for judgment and decision-making is the Living Will.
In her later years, my mother suffered from dementia and was no longer able to communicate
her wishes, but I am glad that she joined while she was able to express her wishes clearly.”(Shiga)“I realized that the Living Will is the only and last way for patients to assert their freedom.
Without it, I would have been at the mercy of a third party.” (Kyoto)9Decision support website for healthcare choices during
the last phase of life

The Little Lighthouse Project Guide.
Helping families understand Living Will
JSDD member’s family wants him or her to live as long as possible.
The “Survivor Questionnaire” shows how the family members entrusted with the Living Will aretorn between wanting to fulfill the person's wishes and wanting the person to live as long as
possible. It takes a lot of determination for the family to fulfill the Living Will.
The only way to break the family's hesitation and encourage them to be prepared is to continuecommunicating their unshakable beliefs. This article presents an episode in which a family
member says he or she was persuaded without giving up until the family member was convinced.

Actions by members move the family.
The idea that a long life is a good thing is a value that has been ingrained in society for centuries.
It is understandably difficult to accept the idea of controlling one's own life.
That is why it is important to note that it is not just a random statement but an act of becoming amember of the Japan Society for Dying with Dignity and that this action helps to persuade thefamily.
By 2022, nearly 70% of the JSDD’s 90,000 members were women.
We have therefore decided to run a series of informational advertisements for one year, startingwith the May issue of Fujin Kōron (which is scheduled for release on 15 April.)
The informational advertisements make people who are not sure what to do think about giving it
a try. Let us hope that your experiences concerning end-of-life care will influence medical
choices, decisions, and actions in the final stages of life.

End-of-life care episodes(From my experiences of end-of-life care for my husband)
I thought I was going to make preparations for my death before I turned 80, and when I sent out a Living Will card
to my son and told him my thoughts, he replied, "Maybe it seems that way now because you are doing well, butwhen you are older, you may want to see your grandchildren's coming-of-age ceremony, and I want you to see it
too. I want you to live as long as possible even if it is only one day longer!”
After much discussion, I couldn't get him to understand.
So, I showed him an essay I had written about my feelings the year before my first grandson was born and told
my son, “It's not that I can't bear to be in your care, but I have had this feeling for a long time.” I told him.
He then said, “I understand your intentions. I will firmly accept them.” He finally agreed.
Holding the JSDD card with strong feelings and the acceleration acknowledging this has stabilized his mind.”10

telephone and email medical
consultations

This magazine page presents specific cases of telephone and email consultations and answers. The
consultant (nurse) will answer the questions, but sometimes we may also ask for the help of a consultant
doctor.

Critical points “for choosing the medical care that you want”.
As a sequel to Palliative Care, this page introduces the member doctors of the Japan
Society for Dying with Dignity, who have been practicing patient-oriented medicine formany years and provides critical points for patients to choose the medical treatment theywant.
Thoughts of a palliative care specialist
The palliative care doctor who gave us advice on neuropathic pain caused by diabetes in theprevious issue has been treating patients suffering from various types of pain for many years
with a patient-centered approach to medicine. The attitude of the practice has been thatconsistent pain is something that only you can understand, and others cannot. For this reason,
patients need to understand their bodies well, communicate the intensity of their pain andtreatment effects in the correct terms, and choose the medical treatment they want. The idea isthat healthcare professionals must answer this.
In the outpatient clinic setting, medical drugs' effects and side effects are explained and agreed
upon. The doctor will check the effects and side effects over the phone and advise for several
days, mornings and evenings, starting the next day.
Patients understand that they are the only ones who can control their pain, and they keep detailed
records and reports on the time they take the medication and any changes in pain.
Some patients continue to take medical narcotics for an extended period of time and yet regain
the joy of being able to control their pain and continue working, and the desire to continue their
hobbies, such as traditional Japanese embroidery (sashiko), and enjoy their lives vigorously
while passing it on to the younger generation.

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However, although medical anesthesia is said to be the best medicine if taken correctly, prejudiceagainst those who take it is strong, and it is not uncommon for people to stop taking it halfway
through.
There are regular opportunities for healthcare professionals and patients to learn medical
knowledge about the safe and proper use of medical anesthesia and to exchange information witheach other.

Choosing the medical care that you want
The medical treatment system has shifted in recent years from one in which patients are left totheir own will to go to a hospital to be cured when they fall ill to one in which the patient is themain focus of the treatment.
This requires patients to clarify the purpose of their treatment and to make choices.
However, many patients lack specialized medical knowledge and are at a loss.

Key points for seeing a doctor
1 Tell them what you want to tell them in your own words, specifically and clearly. Make a note○of when and where the symptoms started, what the symptoms are, and any problems you arehaving.
2 Confirm important information given by the doctor by writing it down. Even if you think you○
understood the information on the spot, your understanding may be unclear.
3 Once you are satisfied with the purpose of the examination and treatment, decide on it. You○
do not have to decide on the spot. Consult with experts and others around you about anyquestions you have.
4 Ask questions as many times as you like about things you are not convinced about. Do not be○
rude, or stop seeing the doctor, or anything like that. You can avoid regrettable consequences
later on.
5 The decision is yours to make. You can discuss the direction of your decision with your○health care professionals and family members as many times as you wish (ACP, life conference.)
We hope that your medical consultation will be an opportunity to assist you in choosing the
medical care you desire. We also hope that you will use our consultation service as a familiar
place for you to spend your days in your own way, and not keep it to yourself.

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