Editor-in-Chief: Hitoshi ARIMA, Yokohama City University
Editors: Toshitaka ADACHI, Kameda University of Health Sciences
Kaoruko AITA, University of Tokyo
Kenji HATTORI, Gunma University
Yasushi ISHIDA, Kanagawa University
Kimiko KATSUYAMA, Yokohama City University
Yasushi KOIDE, Shibaura Institute of Technology
Yutaka MARUHASHI, University of Hyogo
Masami MARUYAMA, Kyushu University
Jun MATSUDA, Shizuoka University
Akira MURAMATSU, Waseda University

Journal of Philosophy and Ethics in Health Care and Medicine

Editorial Board

Takeshi NAKAZAWA, Meikai University

Journal of Philosophy and Ethics
in Health Care and Medicine
No. 13, December 2019
Editorial

1

INVITED PAPER (SPECIAL REPORT)

Inclusion of Persons with Disabilities in the Documents of
the National Bioethics Committee of the Republic of San Marino
Luisa BORGIA, Giampiero GRIFFO

2REVIEW ARTICLE

Junichiro OKUDA, Sophia University

Conscientious Objection and Other Grounds for Vaccination
Refusals Worldwide

Yukari SENBA, Ochanomizu University
Koichi SETOYAMA, Kyoto Prefectural University of Medicine

Yutaka KATO

11

Motomu SHIMODA, Kyoto Women’s University
RESEARCH REPORT

Healthcare Interpreters’ Advocacy for Patients in Japan
Keiko HATTORI

25

Masaoka Shiki’s Last Days and His Creations:

Notes on a Poet Who Suffered from Tuberculosis and Spinal Caries

Ren INO

38

Journal of Philosophy and Ethics in Health Care and Medicine
No. 13, December 2019
Published by

Japanese Association for Philosophical and Ethical Researches in Medicine

Printed by
Shintou-Insatsu Co., Ltd., Tokyo, Japan

ISSM 1881-2201

No.13, December 2019

Secretary General : Masashi Tsuboi
Kanagawa University, Faculty of Foreign Languages
3-27-1 Rokkakubashi, Kanagawa-ku, Yokohama-shi,
Kanagawa, 221-8686 JAPANE-mail: jimukyoku@itetsu.jp
http://pe-med.sakura.ne.jp/

Japanese Association for
Philosophical and Ethical Researches in Medicine

Editorial

Hitoshi ARIMA
Yokohama City University
E-mail: arima@yokohama-cu.ac.jp

This volume of the Journal of Philosophy and Ethics
in Health Care and Medicine contains one invited
paper and three papers accepted through peerreview.
T he open i ng paper is a n i nv ited paper
authored by two members of the National Bioethics
Committee of the Republic of San Marino, Luisa
Borgia and Giampiero Griffo. In past years, thecommittee created a few documents concerning
bioethics and disability, including one entitled
Bioethical Approach to Persons with Disability,
published in 2013. These documents provide
detailed discussions as to what it means to protect
the rights and interests of disabled people in thecontext of policy-related debate in bioethics. Borgia
and Griffo explain the contents and purpose ofdrafting each of these documents and discuss theirimplications for future bioethical debates.
The next paper, by Yutaka Kato, is a reporton vaccination refusal. An individual’s right torefuse vaccination has the potential of posing aserious threat to public health. Based on a surveyof relevant literature, Kato made it clear that whilepeople do refuse vaccination across countries,
there are very few reports on the current situation,worldwide, of vaccination refusal, including thereasons why people refuse, excepting reports
from the United States. Kato’s paper shows that
more empirical research is needed in this area, inorder to investigate the justifiability of limiting an
individual’s right to refuse vaccination.
Keiko Hat tor i considers the advocator yrole medical interpreters can play in the clinicalsetting. As the number of immigrants to Japan

increases, there is a growing demand for medical
interpreters. It is sometimes said that medical
inter preters can do more than act as bi- or
multi-lingual interlocutors; in addition, they
are increasingly expected to bridge the culturalgap between the care-giver and patient, as
well as to prevent forseeable conf licts arisingfrom misunderstandings, thereby playing therole of a patient advocate, protecting the rights
and interests of the patient who may come froma potentially socially disadvantaged group.
Hattori investigates the appropriateness of suchan additional role, based on her findings frominterviews with medical interpreters currently
working in Japan.
T he paper of Ren I no deals w it h t henineteenth century Japanese poet, Masaoka
Shiki, who suffered from tuberculosis and was
bedridden for years before he died at the age of
35. By analyzing Shiki’s writings, Ino describes
how the poet overcame suicidal ideation andclarified his thoughts and struggles as the poetcame to accept his difficult situation and creatednumerous pieces of beautiful poetry about his
immediate surroundings. Ino describes in detail,the last years of Shiki’s life, which contain
important lessons for the ethics of end-of-lifecare.
As I succeed Yutaka Maruhashi in the roleof editor-in-chief of the Journal of Philosophy
and Ethics in Health Care and Medicine, letme express my sincere gratitude to Professor
Maruhashi for his help and for his thoughtful andcareful work as the editor-in-chief, in the past
years.

1

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

INVITED PAPER (SPECIAL REPORT)

Inclusion of Persons with Disabilities in theDocuments of the National Bioethics Committee of
the Republic of San Marino
1

Luisa BORGIA 2, Giampiero GRIFFO3
Borgia: Polytechnic University of Marche (Italy)
Griffo: Suor Orsola Benincasa University of Naples (Italy)
Email: luiborgia@gmail.com (Correspondence: Luisa Borgia); giambatman1@gmail.com

Abstract
In an effort to broaden discussion and reflection on issues concerning people with disabilities, theNational Bioethics Committee of San Marino (Comitato Sammarinese di Bioetica, CSB) has appointed
Dr. Giampiero Griffo of Disabled Peoples’ International (DPI), as an external expert to help CSB
generate an on-going discussion about disability issues, as requested by the UN Convention on the
Rights of Persons with Disabilities (UN CRPD).
This appointment constitutes the first international example of collaboration between the CSB anda representative of associations of persons with disabilities, with the specific task of identifying theimplications related to the issue of disability.
The first document, “Bioethical Approach to Persons with Disabilities” (2013) represents the firstever work developed by a National Bioethics Committee on the topic of people with disabilities.
In the “Bioethics of Disasters” document (2017), the chapter dedicated to the management of persons
with disabilities, involved both in natural and human catastrophes and in emergency interventions forhealth conditions, also stands out.
The last document, “Decision Making in the Care of the Sick Person at the End of Life” (2019),
considers the following topics: approaches to the condition of disability, contextual elements with which
the person with disabilities relates, informed consent, and forms of support at the end of life.
Key words: persons with disabilities, UNCRPD, human rights, mainstreaming, participation.

“Nothing about us without us”: this is not just acatchy slogan for associations of disabled people,
but the expression represents a central theme thathas allowed collaboration between the National
Bioethics Committee of San Marino (CSB) andthe world of people with disabilities (Disabled
Peoples’ International Europe).
Since its establishment in 2010, Giampiero
Griffo was appointed by CSB to act as anexternal expert of DPI Italia 4 in the disability
field.
T h is i nclu sion re present s t he f i r st
international example of cooperation between
the CSB and a representative of an organization
dedicated to helping people with disabilities andtasked with identifying implications connected2

to the subject of disabilit y, in com mit tee
discussions.
Reasons for the inclusion of an external
expert stem from two considerations: the goal of
introducing in the debates and in the bioethicalchoices a defense of human rights of persons
with disabilities, who are still often treateddifferently, compared to others, based on a
medical/individual model of disability5. The
second reason for inclusion comes from the UN
CRPD, contained in Article 4(3): “In order toelaborate and fulfill the legislation and politics tobe adopted to carry out the present Convention,
as well as in the other decision-making processes
concerning matters regarding disabled people,
State Parties work closely in consultations,Inclusion of Persons with Disabilities in the Documents of .... Luisa Borgia, Giampiero Griffo

actively involving persons with disabilities,
i nclud i ng d isabled m i nor s, t h roug h t hei r
representative organizations.” From these same
motivations, DPI Europe, the European Disability
Forum, and the International Federation for
Hydrocephalus and Spina Bifida 6 , have been
active in passing several Assembly resolutions
and promoting related research7. Close attention
was given by Disabled Peoples’ International(DPI) Italia to the risks of discrimination
connected to the condition of disabled women(Galati and Barbuto 2006). Further, even the
UN Committee on the Rights of Persons with
Disabilities (CRPD) highlighted, in generalcomment n.7, about the importance of the subjectof participation for the organizations of persons
with disabilities8.
I n t h is a r t icle, we exa m i ne t he mai ndocuments drawn up by the CSB in which thethemes of disability, the effects of mainstreaming
discussions of disability, and the consequences ofthe main documents9.

1. The document “BioethicalApproach to Persons with
Disabilities”
The first and most exemplary result of thiscooperation is the “Bioethical Approach to
Persons with Disabilities” document, publishedin 2013, the first-ever document edited by a
National Bioethics Committee concerning thistheme10. The document authors strove to start acomprehensive investigation into a subject largely
absent from international bioethics evaluation, fora multitude of reasons: the complexity and extent
of the subject, the lack of a unanimous and shareddefinition of disability, the linguistic fluidity andsemantic evolution that has characterized thistheme over the centuries, the difficulty of facing
without prejudice subjects long considered taboo,
the inadequate awareness by disabled people
themselves of their human dignity, all of whichhave persistently kept them excluded from thepublic debate.
T he reasons listed help to explai n
the absence of inter national organizationscommenting on the theme of disability, until
December 2006, with the approval of the
U N Convention on the R ights of Persons
with Disabilities. Despite this UN approval,

bioethical organizations have been largely silent
on this theme, creating, in an indirect way11, aparadox: people with disabilities, among these,
women, children, and older people, represent
one of the most vulnerable groups, for whom
members of the contemporary international
bioethics community can and must act, so thatthe essential principles of beneficence, autonomy,
and justice may be consistently applied.
The UN CRPD is an important first stepin reinstating human rights to persons withdisabilities as well, on the basis of a universal
criterion that gives some political force toupholding human dignity. This approach is inline with the UNESCO Universal Declaration of
Bioethics and Human Rights12, but this approach
had never before worked in unison with the UN
Convention. CSB, along with Giampiero Griffo,
decided to issue the document since the UN
Convention mentioned offers a cultural frameof reference representing an historical event
presaging a change in the approach to persons
with disabilities, utilizing a bio-psycho-social
model of disability grounded in a respect forhuman rights. Only after a period of decades will
it be possible to assess its benefit.
In fact, a new and growing awareness of
disability as an ordinary and universal condition
that potentially every human being possesses,
as expressed by the World Health Organization(WHO 2011), challenges us to consider disability
in decisions linked to development and socialorganization. The protection of human rights,
social inclusion policies, and the developmentof social environments, inspired in part by
the concepts of Universal Design, affects all
societies. The policies of social inclusion,
designed to remove the conditions producing
disabilities, refer to general policies of society
and represent a new challenge of this millennium
and an investment in the future.
The UN CRPD introduces a reversal ofperspective in the reading of the conditionof d isabled people: before even k now i ng
their needs, it is necessary to begin with therecognition of their human rights. The conceptual
novelty contained in the definition of disability(“Disability is the result of the interaction
between people with impairments and attitudinal
and environmental barriers that hinder theirfull and effective participation in society on an
3

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019equal basis with others.”) focuses on the social
relationship between characteristics of people andthe way the society takes these characteristics
into account.
This new focus on social relationships meansthat the condition of disability is not determined
automatically by health factors, a common
and uncritical view still found in bioethicaldiscussions concerning people with disabilities.
In fact, the UN CRPD goes beyond the medical
model of disability, which attributes the conditionof disability to health and individual factors.
Instead, the UN CRPD emphasizes the social
model based on respect for human rights that
describes how disability conditions are produced,
creating barriers, obstacles and discriminationthat limit privacy and respect for their humanrights. In the field of bioethics, cultural andtechnical approaches based on the medical model
are still prevalent; an example of this approach
is found in the field of genetic counseling that
all too often conditions and prepares family
members about the likely limitations and negative
conditions their baby or fetus will endure,
after having been diagnosed with a significant
malformation. More appropriate, instead, would
be to involve other points of view, such as those
professional associations that can help explain
what it means to live with physical conditions andcharacteristics a society considers undesirable
and yet still thrive. There are numerous examples
of successful people who also happened to havedisabilities, such as Stephen Hawking, who lived
for decades with ALS, who is also considered oneof the most important astrophysicists of our age,or the numerous people with Down’s syndrome
who have graduated from various universities
and have enjoyed successful careers. Ending such
lives through elective abortion or infanticide
would have canceled opportunities to benefit
from their contributions. This growing trend ofincluding people with even profound disabilities
stands in stark contrast to the views of Australianphilosopher Peter Singer who has often argued
that parents must not feel morally required tocontinue with a pregnancy of a baby diagnosed
with Down’s Syndrome.13
A further innovation is the concept ofprogressive social inclusion of people withdisabilities who, included in the protective scopeof respect for human rights, assume their role of4civic citizenship in a society that must look after
them. The aim of the UN CRPD is to forbid allforms of discrimination based on disability andto guarantee equal and effective legal protection
against discrimination. Every time a personwith a disability is treated differently without
justification, he/she suffers discrimination thatis a violation of human rights. Further, since
there are conditions that produce multiple formsof discrimination, UN CRPD pays particularattention to disabled women and children,with two specific Articles (Art.6 and Art.7).
The new approach of the UN CRPD aims toovertake the traditional institutionalizing andsegregationist view of treating persons withdisabilities. Instead, the UN CRPD promotes
the idea of everyone living in one community,with the support provided for a more independent
life (Art.19 and Art.20), providing respectfultreatment of human rights for people who areunable to represent themselves (Art.12) andgiving access to all rights on the basis of equality
with other citizens and without discrimination.
A not he r i m p o r t a nt f a c t o r r el a t e d t odiscrimination against persons with disabilities
is considered in Equal Opportunities (Art. 5 of
the UN CRPD), precisely defined in the UN
Standard Rules14. Ensuring Equal Opportunities
on the basis of equality with other people requires
the implementation of adequate measuresand suppor ts, so that disabled people canparticipate fully in society and enjoy all humanrights and fundamental freedoms. Combining
non-discrimination and equal opportunities
representing the new framework of international
legal protection means that states and societies
shou ld e nde avor t o ide nt i f y a nd preve nt
encroachments on human rights and fundamental
freedoms.
Disability, whose definition emerges fromthe social relation between characteristics ofpeople and the social and physical environment,
can therefore be mitigated, not just in the healthsphere, by reducing the consequences of disease,accidents, and old age, but also in the social
sphere, by removing obstacles and barriers, byproviding technical assistance, applying helpful
techniques and aids, creating the conditions forpreventing discrimination and unequal treatment.
Regarding respect for human rights, we
can help remove negative cultural stereotypes

Inclusion of Persons with Disabilities in the Documents of .... Luisa Borgia, Giampiero Griffo

and prejudices by integrating a bioethicalthought to this new paradigm of disability. In
fact, the protection of human rights for disabled
people can be applied to a wide range of rights
and activities: from those related to access togoods and services, to those related to shielding
sensitive information and those connected to
medical and social treatments. In protecting theserights, we find the challenges in accessing healthservices an important topic, as the principles ofjustice and equal treatment are integrated andinvoked.
The idea of justice, applied to a disability inthe context of the bio-psycho-social model andbased on respect for human rights introducedby the U N CR PD and related policies andservices, still focuses mainly on health careand rehabilitation, welfare, compensatory andprotective measures. The U N Convention,
however, introduces a new model of disability,
framing it in a universalistic perspective, basedon rights-centered arguments. This new model,
previously widely made explicit with othergroups in a society, revolutionizes the economic,
political, cultural, and social behavior connected
to disabled people.
The UN CRPD expresses a new model ofjustice indeed and is not a purely metaphysicalfor m of ju st ice. I n stea d , t h is new modelor paradigm is not conf ined to matters ofassistance, care, compensation, or protection.
The new paradigm, based on equality andnon-discrimination and designed to eradicate
exploitation and empower discriminated anddisadvantaged people, removes obstacles anddiscrimination for the proper support of people,
facilitating the services and benefits designatedfor formerly excluded subjects.
The model of justice connected to the UN
CRPD profoundly modifies the political viewof the condition of people with disabilities. As
vulnerable persons, due to functional differences,persons with disabilities have become rightsholders in the political/moral community. Withinthat community, a society has to provide equal
opportunities and guard against discrimination.
The U N Convention, considering disabled
people as a part of society, acknowledges theirright to benefits from all relevant policies andprograms. In this new view, social and material
resources must be used for all members of thepolitical/moral community. Mainstreaming
policies is an innovative approach, and disabled
members are moving from assisted to potential
payers, who may need appropriate support toparticipate well in community life. We canmonitor statistical data to see the impact of thisnew political approach, in such areas as the levelof accessibility of a city, discrimination in accessto goods and services, obstacles and barriers
that prevent full participation and inclusionin the world of education, work, tourism, andleisure. This UN CRPD shows that, in order tobuild these new policies and to achieve the newidea of justice linked to its application, we alsoneed to develop new areas of knowledge, a new
consciousness, a new cultural approach, so thatthe role of persons with disabilities becomes anintegral and inalienable part of this new political/
moral community. An increasing concern ofsome international associations of persons withdisabilities and their families is the quickly
expanding progress of biomedicine and genetics
and the moral and practical implications of thisprogress, especially in regard to the potential
for discrimination and violation of human rights
accorded persons with disabilities. As a result,many initiatives of associations championing theconcerns of persons with disabilities have takenplace, such as Inclusion International and Disable
Peoples’ International.
In the last few years and in different
c ou nt r ie s , t he a c t iv it ie s c on ne c t e d w it hbio m e d ic i n e h ave t ou ch e d p e r s o n s w it hd isabi l it ie s, h ig h l ig ht i ng d isc r i m i n at or yapproaches that have produced great emotional
impact on public opinion, since these aredecisions about the quality of people’s lives, of
their right to exist (euthanasia, right to live) in thecontext of an ever-expanding array of medical
technologies and methods that increase humans’capacity to influence the growth and development
of offspring (medically assisted procreation,
genetic therapies, genetic manipulation, cloning).
Scientific development is increasingly able
to inf luence and ‘transform’ human life, as
researchers strive to prevent or reduce the effects
of disease and old age, as well as enhance andextend human reproductivity far beyond previous
conventions. The reservations expressed byassociations representing the interests of persons
with disabilities and their families derive from5

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019reflections about the practical risks involved inusing “the medical model” of disability as thefavored approach of contemporary biomedicine
and genetics, while possibly violating universal
human rights. The U N CRPD offers a new
approach to the condition of disability based on
respect for human rights; bioethics today has
to start and adapt to this new approach. The
document “Bioethical Approach to Persons with
Disabilities” acknowledges and endorses thegreat contributions made to society by scientificprogress in general and, in particular, by the
medical findings, techniques, and technologies
that have allowed many disabled people to live
well and to be treated fairly. Nevertheless, it isessential that research should aim to improve
the quality of life for everyone and not deny theopportunity to live and make use of rights, goods
and services to anyone.
Associations representing persons withdisabilities are collectively concerned about thegeneral drift of contemporary human genetics
toward a form of positive or negative eugenics
operating under some notion of perfection of thehuman being, absent in nature. In this context,
disease, pain, and diversity would be read as
imperfections that must be corrected. Actually,
imperfection belongs to all human beings, indifferent forms, and functional diversity (Palacios
and Romanach 2006 and Romanach 2009) is
one of these diversities according to the Article
3 of the UN Convention. The notion that theperfect person exists, without genetic mutation,
imperfection, or disease, is a modern myth,indeed. Every human being has a defined setof capabilities and limitations, potential, andskills that, on the basis of life experiences, oflearning processes, of the challenges the person
faces in order to achieve objectives and pursue
wishes, represent real being, always in flux. In
other words, every human being is inherently
unique in shape, capacity, and potential. The
document “Bioethical Approach to Persons with
Disabilities” describes areas of potential abuseof human rights of persons with disabilities,
resulting in different bioethical approaches, inlight of the principles stated in the UN CRPD.
The topics attest to the breadth and scope of theareas concerned: prenatal testing and genetic
counselling; euthanasia; premature babies; endof life; inappropriate and segregating treatments;
6

equal treatment and access to health and social
services; integrity of the person; informed
consent; respect for private life and for sexuality;
quality of life; rehabilitation and qualification;
multiple discriminations; ethics and legal training
on the basis of respect for human rights; anddisability prevention.
Cont empor a r y bioet h ical approa chesto disabled people draw on theory, but theseapproaches are also intricately related to practicallife, including but also beyond the area of
healthcare. Although topics relating to persons
with disabilities and such documents as the UN
CRPD are studied and discussed at university,
the topics are relegated to the world of health andnursing care. Actually, contemporary bioethics
is ubiquitous and relates to many professions,from judge to lawyer, from teacher to architect,to engineer, to public official, to human resource
manager of a company, to name just a few. The
contemporary bioethics movement has muchto offer us in understanding and assessing
human behavior in matters of health, but also
beyond healthcare, in other areas of social
reality. Bioethics forums are therefore centrally
positioned to discuss the theoretical and practicalchallenges in maintaining the rights of all people.

2. The document “Bioethics ofDisasters”
The cooperation that CSB has enjoyed with the
document, “Bioethical Approach to Persons
with Disabilities”, has determined the starting
point for a modus operandi of the Committee
that, where possible, inserts in its documents achapter dedicated to the perspective of persons
with disabilities. This also applies to anotherfundamental document, which has also been
innovative: Bioethics of Disasters, published in
2017.
The Bioethics of Disasters stands out not
only for considering disasters from a bioethicalperspective, never dealt by a National Bioethics
Committee or in the literature concer ningdisaster medicine, but also for the authors’decision to identify, in such a wide-ranging
subject, those arguments of greater bioethicalrelevance that touch upon human well-being. Let
us now consider the treatment of particular people
directly experiencing a disaster: the “indirect

Inclusion of Persons with Disabilities in the Documents of .... Luisa Borgia, Giampiero Griffo

victim”, the journalist, the rescuer nurse, thehospital pharmacist for his/her responsibility
i n the management of d r ugs and medical
devices, animals in the dual role of victims
and rescuers. All of the preceding are featured
in the chapter concerning the management of
persons with disabilities involved in naturaland human disasters, as well as in emergency
interventions. These subjects, approached froma bioethical perspective, take into account themain international documents, including thoseby the World Health Organization (WHO)15, by
the Council of Europe16, the “Sendai Frameworkfor Disaster Risk Reduction”, adopted at the
UN World Conference, held in Japan, in March
201517, the “Charter of Inclusion of Persons with
Disabilities in Humanitarian Action”, approved
at Istanbul’s Global Humanitarian Summit in
May 201618, the Verona Charter19, the Charter ofDisabled People’s Rights in Hospital20, as well as
UN CRPD.
In the management of disabled people
during a crisis, first aid in its various stages isthe critical element: warning systems that often
exclude deaf and blind people, triage that fails
to take account of disability conditions; lack ofa mapping strategy that is respectful of privacyof housing conditions and people’s autonomy in
the case of an evacuation; primary care that often
is not made by adequately trained personnel,
evacuation routes with limited access; lack ofproper programming at initial admission areas toaccommodate refugees and internally displaced
people; facilities that rarely take into accountthe needs of disabled people; poor involvement
by organizations in the planning, intervention,and management of var ious st ages of theemergency; and inadequate inclusion of people
with disabilities in the preventive plans for an
emergency.
I n it s c o n cl u sio n , t h e “B i o e t h i c s o f
Disasters” document recommends a specificplan for emergency services, so that disabled
people could be included at all stages of theemergency event, ensuring non-discrimination,equality of opportunity and accessibility, andavailability of spaces and services, by appropriate
training of the operators, carried out by involvingorga n i zat ional advocates for people wit hdisabilities.

3. The document “Decision-making
in the care of the sick person at
the end of life”
The “Decision-making in the care of the sickperson at the end of life” document was approvedin March, 2019, in the Republic of San Marino,
and it constitutes an opinion drafted following
an Agenda received by the Parliament of San
Marino.
The drafting of the opinion is par t ofa process undertaken by CSB since its firstmandate on bioethical reflection in the context ofthe end of life, starting from the first document,“The Assessment of Human Death” (2013), which
was followed by “Body and Body Part Donation
for Therapeutic or Scientific Purposes” (2016),“Nursing Code of Ethics”(2017) and “PainManagement Nursing: Bioethical Aspects”(2017).
The “Decision-making in the care of thesick person at the end of life” document focuseson the concept of caring for the dying person,a concept that is part of the fundamental rights
enshrined in the UN Universal Declarationof Hu ma n R ig ht s. I n li ne w it h what wa s
recom mended i n t he recent i nter nat ional
bioethics documents, the CSB examined theprinciples applicable to the decision-making
process that must guide healthcare practitioners
in taking care of the sick person in limine vitae,
analyzing the characteristics and role of each
person involved, be it a member of the care team,family member, caregiver, or trusted person.
The Palliative Care section of the “Decisionmaking in the care of the sick person at theend of life” document identifies a key elementof treatment, as these last care-givers ensure
respect for and dignity of the person dealing
with incu rabilit y and decline of capacit y.
However, aware of the deep bioethical valueof such a concept of care described above, theCSB wanted to deepen the scientific, bioethical,
and bio-juridical aspects of the care concept,
by articulating them in the various phases of aperson’s life, starting from infancy to the mostadvanced age, dedicating special chapters toparticularly topical issues such as end-of-life
pharmacological support and advance indications
on care choices.
Also in “Decision-making in the care of the7

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

sick person at the end of life”, the CSB dedicatesa chapter to persons with disabilities, confirming
its continued sensitivity to this specific topic,
in the wake of similar commitment expressed
i n “Bioethical Approach to Persons with
Disabilities” (2013).

4. The associations of persons withdisabilities and the Council ofEuropeThe presence of an expert in the disability sector
within CSB has also allowed a cooperation at thelevel of the Council of Europe on some particular
documents.
In particular, persons with disabilities had
the opportunity to outline their position withregard to the draft of the “Additional protocol
to the Oviedo Convention on human rights
and dignity of persons with mental disorders,with particular attention to placement and to
involuntar y treatment” 21. The work on thisadditional protocol is cur rently under way,
and the possibility to converse directly withsome members of the Delegations of Bioethics
Committee of the Council of Europe represents
a great example of inclusion and mainstreaming,
rather than exclusion and side-lining.

5. The associations of persons withdisabilities and the international
debateThis long and fruitful collaboration with theassociations of disabled people has brought tolife some international publications of particularscientific standing (Borgia and Griffo 2014 and2014b). As well, the collaboration has led toseveral conferences dedicated to disability andits bioethical aspects22 and the inclusion of thedisability subject into the Master’s program in
Bioethics at Camerino University (Italy) and at
Polytechnic University of Marche, Ancona (Italy).
In conclusion, the examples of cooperation
highlighted represent how effective action ofmulti-level mainstreaming in different fields ofacademia and of international institutions in thespecific bioethical area can be realized. Our hopeis that these examples of collaboration may be an
incentive to other deeper forms of collaborationin yet other social contexts, with the knowledge
8

that inclusion, rather than exclusion, represents
our collective future.
Endnotes
1 The documents are available at the following web
link: http://www.sanita.sm/on-line/home/bioetica/
comitato-sammarinese-di-bioetica/documents-inenglish.html.
2 Deput y President of the National Bioethics
Committee of the Republic of San Marino andmember of DH-Bio, Council of Europe, Professorof Bioethics at the Polytechnic University ofMarche, Ancona (Italy).
3 Co-Director of the Center for Governmentality
and Disability Studies (CeRC) “Robert Castel”,
University “Suor Orsola Benincasa” of Naples(https://www.unisob.na.it/ateneo/c007.htm?vr=1),
a member of the Bioethics Committee of the
Republic of San Marino and a member of theWorld Council of Disabled Peoples’ InternationalDPI (www.dpi.org ).
4 Non-profit organization
5 Read Disabled Peoples’ International Europe”DPI Europe Position statement on Bioethics andHuman Rights”, which is available along with otherbioethical documents at web link http://www.dpieurope.org/bioethics_issues/
6 International Federation for Hydrocephalus andSpina Bifida Risoluzione sulla diagnosi prenatale
ed il diritto di essere differente (Toulose, 2000),
Risoluzione sull’eutanasia dei neonati affetti daspina bifida e/o idrocefalo ed il diritto alla vita
(Helsinki, 2006), Groningen Protocol. Position
Paper on the Disability Stereotypes, International
Human R ights and Infanticide (di James E.
Wilkinson 2008), see the web link www.ifglobal.
org.
7 European Disability Forum approved (Rome,
2006) Risoluzione sulle diagnosi prenatali ed
il diritto di essere differenti (Atene 2001) and
Risoluzione sulla terminazione attiva della vita
di neonati con disabilità e sul diritto alla vita.
Recently, they published, together with the Spanish
Fundacion Cermi Mujeres, the volume Ending
Forced Sterilization of Women and Girls with
Disabilities (2018), see the web link www.edf-feph.
org .
8 See the web link: https://tbinternet.ohchr.org/_l ayo u t s /15/ t r e a t y b o d ye x t e r n a l / D ow n lo a d .

Inclusion of Persons with Disabilities in the Documents of .... Luisa Borgia, Giampiero Griffo

aspx?symbolno=CRPD/C/GC/7&Lang=en
9 The documents are available at the web link: http://
www.sanita.sm/on-line/home/bioetica/comitatosammarinese-di-bioetica.html In Italian andEnglish versions.
10 In the document, the reader can f ind a vast
bibliography and webography about bioethics anddisability themes.
11 Check the document of the Italian National
Bioethics Committee “Bioetica e Riabilitazione”(2006): http://bioetica.governo.it/it/documenti/
pareri-e-risposte/bioetica-e-riabilitazione/
12 P a s s e d a t X X X I I I U N E S C O G e n e r a l
Conference (2005), http://unesdoc.unesco.org/
images/0014/001461/146180E.pdf
13 See Practical Ethics, Cambridge University Press,
Cambridge, 1980; second edition, 1993; third
edition, 2011. ISBN 0-521-22920-0, ISBN 0-52129720-6, ISBN 978-0-521-70768-8.
14 Se e ht t ps://w w w.u n.org /developme nt /de sa /disabilities/standard-rules-on-the-equalization-ofopportunities-for-persons-with-disabilities.html
15 World Health Organization, Guidance Note on
Disability and Emergency Risk Management for
Health, 2013.
16 C o u n c i l o f E u r o p e , “ G u i d e l i n e s a n d
Recommendations on Including People with
Disabilities in Disaster Prepared ness andResponse”, 2014.
17 ht t p://w w w.preve nt ionweb.net /f iles/43291_
sendaiframeworkfordrren.pdf
18 https://www.worldhumanitariansummit.org/sites/
default/files/keydocuments/SS02%20Disabilities.
pdf
19 Verona Charter – about the rescue of disabled
people in case of disasters (2007).
20 h t t p s : / / s p e s c o n t r a s p e m . i t / w p - c o n t e n t /uploads/2018/04/carta_diritti.pdf
21 The additional protocol is still being written in theCouncil of Europe’s Bioethics Committee (DHBIO),
22 European Summit “Disability and Bioethics: The
Rights, the Dilemmas”, promoted by the regional
Venetian government, in the session “Genetic tests,
disability and bioethics: European experiencescompared”, Padova, 13-14th of November 2003;
Conference of Massa e Carrara’s Azienda USL –Local Ethics Committee – Bioethical Laboratory– The Legal Medicine Unit – Operation Unitof training, Health Education, Communication
and Information; “Bioethics and People with

Disabilities: The Protection of Human Rights in
Any Conditions of Disadvantage, with “Bioethics
and disabled people”, Massa 21st of May 2005;
refresher course of the ASL in Naples 5 “The
psychiatrist acting on the ter ritor y: between
clinics and legislation” with “Is it possible to havebioethics in psychiatry?”, Pompei (NA) 29th of
September 2005; day of the constitutional right for
health protection (Art. 32 of the It. Const.): rarediseases and disabilities “We’re rare…but many. To
build a “unique breadth”, organized by the National
Association “Giuseppe Dossetti: Values”, with“Rare diseases and right to health: an impossiblecombination?”, Rome 5th of March 2010; “Roundtable: respect for human rights and the promotionof inclusion”, organized by the Secretariats of State
Health and Social Security, by the Secretariat ofState to Education and Culture, and by the Social
Security Institute, Republic of San Marino, 13th ofDecember 2013; Round table “Active citizenshipof disabled people in Europe”, in the International
Conference “Respect for human rights for an
active citizenship”, organized by DPI Italia andNational Library of Naples within the European
Project “HABM: The Holocaust of All. Battle of theMemory”, Naples, 27th of January 2014

References[1] Borgia L. M., Mazzarini L., Tagliabracci A.
Bioetica generale e clinica. Torino, Edizioni
Medico Scientifiche, 2009. CD-Rom.
[2] L. Borgia and G. Griffo: The bioethical approach
towards persons with disabilities. A new ideaof justice, in (Hg.) Marie-Jo Thiel, “Ethische
Fragen der “Behinderung”. Ethical Challenges ofDisability”, pp. 43-61, Lit Verlag Berlin – Munster– Wien – Zurich – London. 2014a.
[3] L. Borgia and G. Griffo: L’approche bioéthiqueenvers les personnes handicapées. Une novelle
idée de justice, in (sous la direction de) Marie-Jo
Thiel, “Les Enjeux Ethiques du Handicap”, pp.
77-93, Presses Universitaires de Strasbourg 2014b.
[4] Comitato Sammarinese di Bioetica (National
Bioethics Committee of the Republic of San
Marino), L’approccio bioetico alle persone con
disabilità (Bioethical approach to persons withdisabilities) 2013. Available in English and Italian
at: http://www.sanita.sm/on-line/home/bioetica/
9

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

comitato-sammarinese-di-bioetica.html[5] Comitato Sammarinese di Bioetica (National
Bioethics Committee of the Republic of San
Marino), Bioetica delle Catastrofi (Bioethics ofDisasters ). 2017. Available in English and Italian
at: http://www.sanita.sm/on-line/home/bioetica/
comitato-sammarinese-di-bioetica.html[6] Comitato Sammarinese di Bioetica, (National
Bioethics Committee of the Republic of San
Marino) “Decision-making in the care of thesick person at the end of life”. 2019. Available in
Italian at: http://www.sanita.sm/on-line/home/bioetica/comitato-sammarinese-di-bioetica.html[7] Barbuto R. Galati M. Women, Disability and
Health: Ethical Questions, Protection Strategies
and Instruments in Health and Equal Opportunity
Policies for Women, Comunità Edizioni, Lamezia
Terme (CZ), 2008.
[8] Griffo G. Bioetica e disabilità, pp. 160-161, in
Bioetica generale e clinica. A cura di L. M.
Borgia, L. Mazzantini e A. Tagliabracci. S.l., G.C.
Edizioni medico scientifiche, 2009. Anche in
CD-Rom.
[9] Griffo G. Bioetica e diritti umani, pp.11-14 in
A.I.A.S., A. V, n. 6, Novembre-Dicembre 2000,
Roma.
[10] Griffo G. Bioetica un ponte sul futuro, pp. 2426 in L’Agenda. Trimestrale. UILDM Comitato
regionale lombardo. A. XXV, n. 194, Novembre
2000.
[11] Griffo G. La bioetica ed i diritti umani dellepersone disabili, pp. 156-160 in 7° Convegno
Nazionale Informatica Didattica e Disabilità.
Atti a cura di A. Troconi. Università di Roma La
Sapienza Facoltà di giurisprudenza, Facoltà diPsicologia. 8-9-10 Novembre 2001. Firenze, S.e.,
2001.
[12] Griffo G. La procreazione assistita e la tutela dei
diritti umani delle persone con disabilità, pp. 153164 in La tutela della vita nascente. A proposito
di un recente progetto di legge. A cura di G.
Biscontini e L. Ruggeri. Ercolano, Università di
Camerino, 2003.
[13] Pala cios A, Roma na ch J. El modelo de ladiversidad. La Bioetica y los Derechos Humanos
como erramientas para alcanzr la plena dignidad
en la diversidad funcional. Varda, Edic iones
Diversitas-AIES, 2006.
[14] Romanach Cabrero, J.. Bioetica al otro lado delespejo. La vision de las persona con diversidad
funcional y el respeto a los derechos humanos.
10

Varda, Diversitas ediciones-AIES, 2009.
[15] World Health Organization. World report on
Disability. Geneva, WHO-WB, Malta, 2011.

Conscientious Objection and Other Grounds for Vaccination Refusals Worldwide﻿

Yutaka KATOREVIEW ARTICLE

Conscientious Objection and Other Grounds for
Vaccination Refusals Worldwide
Yutaka KATO
Ishikawa Prefectural Nursing University
Email: yk227@aya.yale.edu

Abstract
Vaccination has contributed to a healthier world population. While it is often considered compulsory
or recommended, people might refuse it for various reasons. According to the classification used in
the United States, refusals can be made on medical, religious (or conscientious), philosophical andother grounds. Although non-medical refusals have been tolerated in some states, some think that
refusals undermine infection control and lead to outbreaks of vaccine-preventable diseases. The
objective of this research is to shed some light on the status quo of vaccination refusal worldwide
and consider rationales and implications of different reasons which some individuals cite to refuse
vaccination. This research examines literature on vaccination refusal published between January 1,
2010 and September 1, 2019, using the PubMed database. Several sets of key words were chosen to
identify a sufficient number of relevant articles. Many studies in the search results sought to find out
factors related to refusal/hesitancy. The articles were classified according to the country or area ofprimary focus. Vaccination refusers are ubiquitous, regardless of whether vaccination is mandatory
or voluntary. Reports on the United States (US) accounted for the majority, and also the majority offirst authors belonged to institutions in the US. As well, the proportion of US-based refusal literatureis greater than that of publications in the medical field worldwide. Outside the US, there were only
sporadic reports for each country. Some reports on the same countries contradicted each other. The
majority of the reasons cited were non-conscientious (medical side-effects of vaccines, fatality from
infections, access, financial problems, etc.). Reports of religious refusal were rare and anecdotal.
There is a possibility more people will refuse vaccinations worldwide in the future, as risks of infections
appear smaller. Therefore, though the numbers of articles on vaccine refusal published each year
gradually increased and then began to decrease, from 2017 to the present, it is advisable to monitor
more carefully the reason for refusals and to track the sources of information.
Key words: conscience, conscientious objection, vaccine, religion, database search, literature

1. Introduction
Vaccination, which is “a biological preparationthat improves immunity to a particular disease,”1
has contributed to a healthier world population.
According to Martinez-Mateo et al., “Nowadays,
vaccines are increasingly powerful, effective andsafe. The list of vaccine-preventable diseases is
expanding” and today contains such diseases as
hepatitis B, measles, rubella, mumps, tetanus,
poliomyelitis, pertussis, diphtheria, meningitis,
and var icella. W hile vacci nation is of ten
considered compulsory or recommended forsome infectious diseases, across the globe, people
have hesitated, delayed, or outright refused
to be vaccinated for various reasons. In thecase of vaccines for children, such as measles,
mumps, rubella (MMR), and human papilloma
virus (HPV) vaccines, parents or guardians arepotential refusers. A variety of reasons are citedfor vaccination refusal. For example, even thoughnumerous scientific researchers have repeatedly
denied a link between vaccination and autism 2 ,this link is still cited by refusers3. As well, theantipathy towards vaccination resulting fromthis false link appears to be more prevalent thanever. Such antipathy is considered a great threat11

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

to public health. Because of “herd immunity”
or “community immunity” (“… when enoughpeople are vaccinated against a certain disease,
the germs can’t travel as easily from person
to person — and the entire community is lesslikely to get the disease.”4); however, not every
person must be vaccinated for vaccinations tobe effective in suppressing infectious diseases.
Thus, the coverage goal of the World HealthOrganization is 90% (not 100%) by 2020.5
A t t e m p t s t o c a t e g o r i z e r e a s o n s fo r
vaccination refusals have been made to help
identify refusals that should be accommodated
and those that should not. In the United States(US), refusals are classified along medical,
religious (or conscientious), philosophical, andother grounds6. Medical refusals are those madebased on the health conditions of refusers,
such as allergies, immune system problems,
etc. Ref usals of t h is t y pe a re considered
acceptable in every state in the US. Further,refusals based on religious grounds are legallypermissible in 45 US states, although few majorreligious groups explicitly refuse vaccinations
today 7. Philosophical refusals refer to thosethat are based on personal reasons. Divergent
risk perception, which is often considered an
unacceptable reason for vaccination refusal, is
usually classified as a philosophical refusal in the
US (as medical exemptions refer exclusively to
professionally endorsed exemptions). According
to one report, “children whose parents refused forreasons of religion” accounted for 4.4%.8 Some
medical professionals, public health experts, andpolicy-makers believe that philosophical refusals
as well as religious refusals undermine infectious
disease control and lead to sporadic outbreaks.9 In
recent years, restrictions on non-medical refusals
or exemptions have been tightened in some areasof the US. For example, according to Delamateret al., the “California Implemented Senate Bill
277 (SB277), in 2016, made California the firststate in nearly 30 years to eliminate nonmedical
exemptions from immunization requirements forschoolchildren.”10 Also, New York “eliminateda religious exemption to vaccine requirements[...] in the face of the nation’s worst measles
outbreak in decades”11 in 2019. A detailed listof US states accommodating religious andphilosophical exemptions is provided by the
National Conferences of State Legislatures.12 .
12Instead of eliminating exemptions, in Ontario,
Canada, administrators strengthened “school
immunization requirements” and introduced“stiffer steps to qualify for a medical, conscience,or religious belief.”13
Research on vaccination intersects multiple
fields, such as biomedicine, bioethics, publichealth, religious studies, and other related
disciplines, because the characteristics ofvaccines and vaccine-preventable diseases,
autonomy and integ r it y of people, hu man
rights, public health goals, grounds for vaccine
hesitancy, along with delay and refusal, need tobe considered.
Relying on the categories of vaccination
refusal in the US, the author of this article seeks
to understand the status quo of vaccination
refusal worldwide and consider the rationales andimplications of the various reasons individuals
cite in their refusals to be vaccinated.

2. Methods
This study examined existing literature on
vaccination refusals published between January
1st of the year 2010 and September 1st of theyear 2019. Articles were identified using the
PubMed database and analyzed in light of thecategories of refusal found in the US14. Medical
Subject Headings (MeSH) terms were used,
if applicable15. Several sets of keywords wereused in PubMed searches of article titles andabstracts to identify a sufficient number of
relevant articles (e.g., “vaccination AND refusal
OR vaccination AND refuse” and “vaccine AND
refuse OR vaccine AND refusal”). Searches
for “vaccination AND refusal OR vaccination
AND refuse” in article titles and abstracts
yielded 34 articles. Further, searches for “vaccine
AND refuse OR vaccine AND refusal” yielded
267 results. Twelve articles appeared in both
searches. Nonrelevant articles, such as thosedealing exclusively with medical researches,
were excluded. Articles without abstracts andarticles written in languages other than English
were also excluded. Of the remaining articles, 11were deemed nonrelevant and excluded becauseof their focus on topics such as contributions inmedical science and refusals of other medical
procedures, etc. Only 9 articles were labeled with
the MeSH term “Religion and Medicine,” which

Conscientious Objection and Other Grounds for Vaccination Refusals Worldwide﻿

necessitated the present study to first investigate
abstracts, followed by further investigation ofentire articles, as needed. The remaining articles
that were ultimately reviewed for this study werethen classified according to the country or regionof primary focus.

3. Results
3.1 A chronological shift
The articles were classified according to theyear when those articles became available to
the general public for the first time. In casemore than one date of publication was recordedin the PubMed search results, the earlier date
was used for this study. Table 1 and Figure 1
show the number of publications that appearedin the search results during the period. Though
this study is not intended as a quantitative
research, the numbers of articles on vaccine
refusal published each year had been gradually
increasing, but presumably started to decrease,around 2017. The reason for this decrease isunknown and hard to explain, but it is necessary
to monitor publications to see whether thistendency will continue.
Table 1, Figure 1
Search resuts
Search resultswith "vaccine" with"vaccination"
2010
15
2010
2
2011
19
2011
2
2012
6
2012
0
2013
23
2013
1
2014
34
2014
1
2015
36
2015
3
2016
49
2016
4
2017
59
2017
12
2018
51
2018
6
2019
23
2019
6

Total
2010
2011
2012
2013
2014
2015
2016
2017
2018
2019

17
21
6
24
35
39
53
71
57
29

80
70
60
50
40
30
20
10
0
2010

2011

2012

2013

2014

2015

2016

2017

2018

2019

Yutaka KATO

3.2 Geographic Scope
Figures 2 and 3 show the geographic focus of
the articles reviewed. Several studies were notgeographically framed, exploring global ortheoretical problems applicable to any country.
For the sake of simplicity, articles focusing on
more than one country are not included. In the
search results, research on vaccination refusals
in the US accounted for 64.2% (77) of the 120
ar ticles published during 2010-2014 whose
geographic areas of focus were specified and52.2% (83) of the 159 articles published during
2015-2019 whose geographic areas of focus
were specified. When Figure 2 and Figure 3 arecompared, the ratio of the articles focusing on the
US decreased, which suggests relatively greaterinterest in vaccine refusal and hesitancy outside
the US in the last five years, and the total numberof published articles is greater in that period.
As geography is insignificant for scientificarticles, except for venues of clinical trials, thisstudy compared the geographical distribution ofarticles according to locations of institutions offirst authors. To simplify matters, if a first author
belonged to more than one institution, only theinstitution listed at the top was used. According
to the Scimago Journal & Country Rank, in thefield of medicine from 1986 to 2018, the US (with
4,148,320 publications) accounts for 25.3% of
all the publications (16,391,492 publications).16
In comparison, the predominance of articles
written by authors belonging to US institutions isconspicuous in this inquiry. Figure 4 and Figure
5 show the geographic distributions according
to first authors in articles whose first authors’
institutions were published during 2010-2014 and2015-2019, respectively.
There were fewer research repor ts on
vaccination refusals by populations outside of the
US. Refusers appear to exist across regulatory
contexts, that is, in places where vaccination
is mandatory as well as those where it is not.
Many articles focused on geographic regions that
attracted attention, for example, because of an
infectious disease outbreak, such as the case of
pertussis that emerged in California in 2010 andpolio outbreaks in regions where polio remains
endemic, such as India, Afghanistan, Pakistan,and Nigeria. In the near future, China may be
another area of focus as a vaccine scandal (“the13Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

Changsheng vaccine crisis”) occurred in 2018,
when “unqualified DTP vaccines were reported
to be used for child vaccination,” causing more
people to be suspicious about the safety ofvaccines.17 Of all articles considered, the authorof this study found that no other country, withthe exception of Canada, was reported to haveintensively discussed methods of classifying
acceptable and unacceptable refusal reasons as
those of the US in abstracts in the search results.
US

US

CanadaCanada

UK

UK

Italy

Italy

US
US
US
AustraliaAustralia Australia
Canada Canada Canada
Italy
Italy
Italy
UK
UK
UK
Poland Poland
PolandChina China
China
Nigeria Nigeria Nigeria
Brazil Brazil
BrazilFrance France
FranceGermanyGermany Germany
MalaysiaMalaysia Malaysia
PakistanPakistan Pakistan
Croatia Croatia Croatia
India India
India
Israel Israel
Israel
Korea Korea
Korea
Saudi Arabia
Saudi Arabia
Saudi Arabia
South Africa
South Africa
South Africa
Spain Spain
Spain
The Netherlands
The Netherlands
The Netherlands Argentina
Argentina Argentina
Bosnia andBosniaHerzegovina
andBosnia
Herzegovina
and Herzegovina
Cameroon
Cameroon Cameroon
Czech RepublicCzech RepublicCzech Republic DenmarkDenmark Denmark
Finland Finland Finland
French Guiana
French Guiana
French Guiana
Japan JapanJapan
RomaniaRomania Romania
Serbia Serbia
SerbiaSierra Leone
Sierra Leone
Sierra Leone
Slovakia Slovakia Slovakia
Sweden Sweden Sweden
Switzerland
SwitzerlandSwitzerland
Turkey Turkey
TurkeyFi g u r e 5 . T h e g e o g r a p h i c d i s t r i b u t i o naccording to f irst author (2015 -2019) indecreasing order

The Netherlands
Nigeria
The Netherlands

Nigeria

TurkeyTurkeyFranceFranceGermany

Germany Spain

Spain

Australia

Australia Belgium

BelgiumBrazilBrazilFinlandFinland

GreeceGreece

Japan

Japan

Malaysia

Malaysia Mexico

MexicoPakistan

Pakistan Saudi Arabia Saudi Arabia

3.3 Regional case studies

As qualitative research, this study did not countthe numbers of articles that dealt with different
Figure 2. The geographic focus of the articles
grounds for hesitancy, delay, and refusal. Instead,(2010-2014) in decreasing orderrecurring or conspicuous reasons for refusal
as well as related themes in the literature wereUS
Australia
US
Australia
identified. Many studies sought to identify
CanadaItaly
CanadaItaly
Germany Germany
Nigeria
Nigeriafactors related to vaccination refusal or hesitancy
PakistanBrazilPakistanBrazil
China
UK
China
UK
to get vaccinated. The majority of the reasons
FranceIsraelFranceIsraelKorea
Malaysia
Korea
Malaysia
cited by refusers were non-conscientious reasons
PolandSaudi Arabia Saudi Arabia
PolandVietnamBosnia and Herzegovinasuch as side-effects of vaccines, low fatality
VietnamBosnia and Herzegovina
Cameroon Cameroon
Chile
Chile
or insignif icant severity of infections that
Czech RepublicCzech Republic Ethiopia
Ethiopia
FranceFrench Guiana
FranceFrench Guiana
vaccinations intend to prevent, limited access
India
Japan
India
Japan
Netherlands Netherlands
Romania
Romania
to vaccine providers, and financial problems.
SerbiaSerbiaSierra LeoneSierra Leone
Spain
South Africa South Africa
Spain
Reports of religion-based refusals did exist, but
TurkeySwitzerland Switzerland
TurkeyUgandaUgandaZimbabwe Zimbabwe
they were rare and anecdotal. Notable cases
from a geographic perspective are described
Figure 3. The geographic focus of the articles(2015-2019) in decreasing order
extensively in the following.
Reports on some countries simply dismiss
USreligions. To Canada
name a few, for example, inUK
Italy
the United Kingdom (UK), while childhood
US
CanadaUK
Italy
immunizations
are voluntary, health care staff
The
Netherlands
Germany
The Netherlands
Germany
strongly encourage
TurkeyFranceparticipation. In London, “inTurkeyFrance2012,apertussis
Japan
Spainoutbreak prompted a national
Japan
Spain
vaccination programfor pregnant women.”18 In
Australia
Belgium
Australia
Belgium
Italy, “skepticism about the vaccine (60.4%) andBrazilChina
BrazilChina
Finland
Greeceits cost (34.1%) were indicated” as the primary
Finland
GreeceIsraelMalaysia
reasons for vaccination refusal.19 Within the
Nigeria
PakistanIsraelMalaysia
context of Bosnia
and Herzegovina, researchers
Saudi Arabia
SwedenNigeria
Pakistan
noted
that
“A
measlesoutbrea k with t wo
UgandaSaudi
ArabiaSwedenepidemic
waves
involving 4,649 probable and
Fi g u r e 4 . T h e g e o g r a p h i c d i s t r i b u t i o nlaboratory-confirmed
cases was recorded in six
Ugandaaccording to f irst author (2010 -2014) inout of ten cantons of the Federation of Bosnia anddecreasing order
Somalia/ethnology
SwedenSomalia/ethnology

14

SwedenConscientious Objection and Other Grounds for Vaccination Refusals Worldwide﻿

Herzegovina between February 2014 and April
2015.”20 The authors refer to the anti-vaccination
movement as “a problem with vaccine refusal
resulting from anti-vaccination activities.”21
In Canada, morality apparently plays someroles in decision-making about vaccinations.
It was reported that “91.4% of responses could
be explained using the conceptual model andspecifically relate to the perceived importance ofvaccination (46.8%), moral convictions (19.4%),
and past experiences with vaccinations services(14.5%).”22 Personal conviction was reported tobe significant in France. According to Barrière
et al., “Non-vaccinated HW were influenced bytheir family physician’s advice (p=0.03), personalconviction (p<0.001) or the media (p<0.001).”23
A r e p o r t o n t h e Ne t h e r l a n d s r e fe r s
explicitly to religious aspects of vaccination
ref u sal. Accord i ng to Spa a n et al., “ T he
Netherlands experienced several outbreaks ofvaccine preventable diseases, largely confined
to an orthodox Protestant minority group….
Multivariate logistic regression showed thatstrongest predictors for vaccinating (future)children were a low or moderate level of religious
conservatism (OR 10.4 [95% CI 5.7-18.9] and 4.6[95% CI 2.9-7.4], respectively), being vaccinatedthemselves (OR 6.0 [95% CI 4.3-8.5]) and higheducational level (OR 2.5 [95% CI 1.6-4.0]).”24
I n C r o a t i a , “A si z e a ble m i n o r it y ofparticipants was characterized by childhood
vaccine refusal (10.6%) and hesitancy intentions(19.5%).” 2 5 Ac c ord i ng t o Re palu st et al.,“Religiosity (AOR = 1.12, p < .05) and theuse of alternative medicine (AOR = 2.85, p <.001) increased the odds of vaccine refusal.”26
Repalust et al. argue that “following the social
contagion model, future research should movebeyond individual-level approach and take into
account social interaction and social network
effects.”27 Considering this case from Croatia,
use of alternative or traditional (instead ofmodern Western) medicine may have something
to do with both religious practices and vaccine
refusals. Gleason et al. reported on the relevanceof “the use of ‘folk’ or home remedies for illness
prevention and t reat ment ” among Af rican
Americans, stating that “those who use home
remedies often or almost always were less likely
to get vaccinated for influenza.”28 This example
may be related to the African American religious

Yutaka KATO

traditions.29
Repor ts on (not necessarily religious)
refusal reasons in African countries were also
identified in the database search. For example,
in Chad, Quoc Cuong et al. found that “SID
(Supplemental Immunization Days) is a special
strategy intended to accelerate eradicationof poliomyelitis in countries where it is still
endemic (India, Afghanistan, and Pakistan, in
Asia, and Nigeria, in Africa). This strategy isalso applied in Nigeria’s neighbours (Cameroon,
Chad, Niger and Benin). Since the poliomyelitis
virus was imported from Nigeria in 2001, Chadhas reported cases of poliomyelitis every year.
After 30 SIDs in Chad and the inaccurate or false
attribution of side-effects to polio vaccines, somegroups persistently refuse polio vaccination.”30
Nigeria was of importance in terms of themorbidity landscape. According to Mangal etal., “In 2012, more than 50% of the world’s cases
occurred in Nigeria following an unanticipatedsurge in incidence.”31 Religiosity apparently
plays a role in Nigeria. “In 2003, local Imams,
traditional leaders and politicians declared a polio
campaign boycott, due to the concerns about
the safety of the polio vaccine.”32 This researchsuggests that the reason for polio vaccine
objections in Nigeria is primarily safety-oriented,
thus placing such reasons in the category of
medical objections. However, it is noteworthy
that Northern Nigeria is a predominantly Islamic
countr y 33 and that the religious leadershipexercised their inf luence in the campaign toboycott polio vaccines. Another body of researchhighlights the significant influence of religiosity.
Michael et al. state that “the majority (59%)
of participants believed that vaccination waseither not necessary or would not be helpful,and 30% thought it might be harmful. Religious
beliefs were an important driver in the way
people understood disease. Fifty-two percentof 48 respondents reported that illnesses were
due to God’s will and/or destiny and that only
God could protect them against illnesses.”34 Yetother researchers such as Taylor et al. doubt thegravity of religious influence, citing statisticalevidence to support their argument. According
to their latest report, “Wealth, female educationand knowledge of vaccines were associated witha lower propensity to refuse oral polio vaccine(OPV) among rural households. But higher risk
15

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019of refusal among wealthier, more literate urbanhouseholds rendered these findings ambiguous.
Ethnic and religious identity did not appear to be
associated with risk of OPV refusal.”35
According to Kriss et al., in Zimbabwe,
which has a predominantly Ch ristian
population, 36 “the apostolic faith in Zimbabwe
has been historically associated with objection
to most med ical i nter vent ions, i nclud i ng
i m mu n i z at ion.” 37 T he aut hor s a rg ue t h at
“disparities in childhood vaccination coverage
and availability of vaccination cards persist for
apostolic [believers] in Zimbabwe. Continued
col labor at ion w it h ap ost ol ic le a de r s a nd
additional research to better understand vaccine
hesitancy and refine interventions and messaging
strategies are needed.”38
Research on vaccination refusal has also
examined refusal rationales in Middle Easterncountries, where, despite a popular image ofreligious enthusiasm in the region, refusals are
not conscientious in most cases. Regarding
Israel, Yitshak-Sade et al. report that “the lowest
immunization coverage was found in Bedouin
schools.”39 The authors put forth “the hypothesisthat difficulties related to accessibility constitutethe main problem rather than noncompliancewith the recommended vaccination protocol forschool-age children.”40 According to a survey on
Israeli health care professionals (HCPs), “reasonsfor vaccine refusal were fear of needles (19 %);fear of side-effects (66 %) and lack of time (16%).”41 In his article on vaccinations in Saudi
Arabia, Ahmed states that “the most common
reason for vaccine refusal was the impressionthat the disease was not fatal (25.4%, n = 32).”42
This reason can be classified as a refusal basedon medical grounds, as this justification depends
primarily on an assessment of the disease.
However, this is considered to constitute a
personal reason, as this assessment is regarded
as divergent by health professionals. Likewise,
Alabbad et al. on research on influenza hesitancy
in Riyadh, Saudi Arabia, found that the mostcommon grounds for refusal center upon risk andbenefits of vaccination.43
A review of the literature also finds researchon the existing types of vaccination refusals
in Asia. Researchers have identified a rangeof categories of vaccination refusal reasons in
Malaysia, including justifications shaped by
16

religious beliefs. Wong reports that “reasons for
vaccine refusal were doubts about safety andefficacy of the new vaccine (27.4%), perceived
embarrassment at receiving an STI vaccine(20.7%), and perception of not being at risk of
HPV infection (20.0%).”44 Whereas “safety andefficacy of the new vaccine” and “perceptionof not being at risk” can be categorized as
medical reasons, refusals based on “perceived
embarrassment” can be affected heavily by
religious traditions, as it is not embarrassing forpeople from other backgrounds. Chan et al. state
that, in Malaysia, “the proportion of mothers
who refused vaccination because of religious
belief reduced from 78% between 2013 and 2015
to 67.1% in 2016 (p = .005). Overall, the finding
confirms the positive impact of the educationaland religious interventions introduced by theState Health Department of Kedah since January
2016.”45 This is suggestive of a possibility ofvaccination promotion by a religious authority,
though religious beliefs are usually considered
to be difficult to change and leave little room
for persuasion; this possibility was reported by
Dutch researchers46).
In Pakistan, research suggests that “parents
refuse to immunize their child because of lack ofimmunization visit knowledge and also becauseof their doubts regarding vaccine potency andside- effects.”47 Nevertheless, another group saw
differently the problem in a country that wasestablished when Muslims across the Indian subcontinent separated from British-controlled India.
Murakami et al. report that “local interpretationsof these facts (perceptions that OPV contained
birth control or pork, that OPV was a foreign/
central plot against Muslims, and that thevaccination was against the Hadith and the fate
determined by God) and different manifestationsof OPV refusal...of other injectable vaccines [were]
almost equally prevalent for reasons that werevery similar.”48 The reference to “a foreign/central
plot against Muslims,” is, in this case, an example
where the hostility or antipathy toward otherreligious traditions can be relevant.
Likewise, research on vaccine-hesitantand vaccine-ref using parents in Aust ralia
id e nt i f ie s p a r e nt a l r eje c t ion of We s t e r n
medical epistemology as a common cause forhesitancy and refusal, a rejection that can also
be influenced by hostility/antipathy toward orConscientious Objection and Other Grounds for Vaccination Refusals Worldwide﻿

disagreement with other religious traditions.49
As for China, religiosity does not appear
as a relevant factor shaping vaccine refusal or
hesitancy. In areas of China, such as Shanghai,
concerns about vaccinations are reported to be
predominantly medical in nature: “Among 618
caregivers, 64% were concerned about vaccine
co-administration and 31% were concerned about
vaccine administration to infants <6 months ofage).”50 In the communist country, where religion,
likened to opium, is prohibited, there seems to
be little room left for religiosity. “In December
2013, this success was threatened by widespread
media reports of infant deaths following HepB
administration ... [resulting in] [s]eventeen deaths
and one case of anaphylactic shock.”51 Also inHong Kong (China), according to Cheung etal., “significant predictors of vaccination …
[include] age, smoking status, comorbidity,
previous hospitalization, perceived susceptibility,p e r c e i v e d s e v e r i t y, a n d p s y c h o l o g i c a lflexibility.”52 In the above figures and table, Hong
Kong is counted along with China. Nevertheless,consider ing the impor tance of t raditional
remedies in China and a recent report on a
possible link between use of alternative medicine
and lower vaccination (as in Australia 53), quasireligious aspects of Chinese traditional medicine
can be worth considering in future researches.
As t he above rev iew suggest s, t hecharacteristics of the particular subgroups one
belongs to can have a greater inf luence onreasons underlying vaccination refusals than thecharacteristics of one’s country of domicile. For
example, the US comprises groups of diverse
racial and religious backgrounds. Somalisin Minnesota is a case in point. “In 2011, an
outbreak of measles in Minnesota was traced
back to an unvaccinated Somali child.54”
3.4 Thematic analysis
This review of existing literature on vaccination
refusal finds that reasons for refusal involve
issues with ethical implications that can beclassified according to several predominantthemes, including risk perception (such as sideeffects of vaccines and fatality of infections,),
informed consent, conflicts of interests, and freerider problems.

Yutaka KATO

3.4.1 Risk perception
With regard to risk perception and f ut ure
prospect s, Bég ué st ates t hat “ t he fea r ofadverse effects is now stronger than the fear of
infectious diseases. The benefits of vaccinationfor vanishing infectious diseases can be hard toperceive.”55 Oraby, Thambi, and Bacuh argue
that “mathematical models that couple disease
dynamics and vaccinating behavior often assume
that the incentive to vaccinate disappears if
disease prevalence is zero. Hence, they predictthat vaccine refusal should be the rule, andelimination should be difficult or impossible.”56 A
closer look at risk perception finds that refusers
are also concerned about “the number of vaccines
given in the first 2 years (25%, CI 22 to 29),
vaccine ingredients (22%, CI 19-25), allergies(18%, CI 15-21), weakening of the immune
system (17%, CI 14-20) and autism (11%, CI8-13).”57 Non-refusers also share similar concerns- nearly half of Australian parents have someconcerns, and a quarter lack vaccine decisionmaking confidence regarding childhood vaccines.
Vaccination can be refused because of fear ofneedles or lack of time.
3.4.2 Informed consent and human rights
One concept that was featured in refusal reasons
was that of i nfor med consent. 58 Mar ti nez
et al. noted that in Granada, Spain, “Nonvaccinators … ask for informed consent.”59
One of the preconditions for autonomy or selfdetermination is that a person is best-positioned
to judge his/her own welfare, avoid harm, andprotect rights and integrity of one’s own body.
However, vaccination’s communal dimension
places it beyond this precondition, as individual
decisions looking to advance one’s own welfare
may negatively impact the welfare of an entire
community.
3.4.3 Reasons for suspicions of vaccination
scienceIn researches on vaccination, collaborations withand assistance from pharmaceutical companies
may be indispensable in some cases. In the
search results, most of the articles declared noconflicts of interests, which is understandable
since the present study excluded purely scientificresearches reporting results of clinical trials.
Only three ar ticles made it clear that they17

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

had conf licts of interest. 60 According to theresearch of Martinez et al., refusers “believedthat vaccination programs are moved by biased
studies and interests other than prevention.”61
This suspicion is only natural because clinical
trials are usually led by those who wish topromote the drug, which constitutes a conflict ofinterest.
3.4.4 The free-rider problem
An individual’s utility is maximized whenever yone else has been vaccinated and theindividual has not: that is, when an individual
engages in free-riding. Such free-riders can beprotected by herd vaccination, with no possibilityof adverse effect. Buttenheim and Asch refer to“participation mandates, exclusion, incentives,a nd social nor m s” a s “ fou r convent ional
responses to the free-rider problem.62 They findthat “some health care providers have adopted thepolicy of refusing to accept into their practices
families who refuse to vaccinate their children
according to the standard vaccine schedule.”63
Whereas some may expect such a penalty to urge
the general public to receive vaccinations, thisexclusion policy can have negative consequences
for the welfare of the broader population, as“many pediatric practices have adopted vaccine
policies that require parents who refuse tovaccinate according to the ACIP [Advisory
Committee on Immunization Practices] schedule
to find another health care provider. Such policies
may inadvertently cluster unvaccinated patients
into practices that tolerate non-vaccination oralternative schedules, turning them into risky
pockets of low herd immunity.”64

4. Discussion
The majority of the articles in the search results
did not include religious refusals and the majorityof the reasons cited were non-conscientious (i.e.,risk perception, access to vaccines, financial
problems, etc.). Reports of religious refusal wererare and anecdotal. Religious refusal can bebased on Christian, Islamic, or other religions,and religiosity-influenced vaccination behavior
in var ious ways, as show n in the Results
section. The first authors of the articles whose
first authors’ institutions were specified in the
PubMed search results were based predominantly
18

in the US; this predominance may be due to fewercases of vaccine refusals, but may otherwise
reflect lower attention to the issue.
4.1 Religious refusals
According to the literature identified by the
database search process, religious refusals
were not necessarily religious in a strict sense.
For example, religions may provide networks
for exchanging and disseminating secular
information that can result in refusal/hesitancy,with religious leaders maintaining an influence
on secular issues such as public health. The
Islamic religion serves as a prime example.
Reportedly, Muslims have refused vaccinationin Nigeria and other countries. Compared toother religious traditions, the Islamic religion
apparently leaves little to the secular dimension(considering the roles of Sharia and the authorityof the imam). Other quasi-religious refusal
reasons include preference to traditional or folk
remedies and antipathy toward other (especially
Western) traditions. The aforementioned reportby Gleason et al. suggests a possibility that
religions are disguised in other practices because,in some areas, folk remedies may be closely
related to religious practices and beliefs.
In cases where vaccination refusal is not
religious in a strict meaning, religions may still
function as a catalyst for non-religious refusals,
but religious participation also may inf luence
the problem surrounding vaccinations. As clerics
can mobilize and motivate people, suggest morevirtuous paths, religions may actually function
for the betterment of public health.
If refusers cite medical reasons, it is more
likely that health care professionals (HCPs)
with their greater expertise on the subject,
could possibly persuade potential refusers to
be vaccinated. On the other hand, if refusals
are made on religious grounds, it may be moredifficult for HCPs to understand their motivationand consequently persuade refusers effectively.
This suggests that the possibility of persuasion(i.e., decision reversal) varies based on different
grounds of refusal. This seems consistent withthe report that “Different reasons for refusal areassociated with different patterns of vaccination
behavior.”65 For HCPs, understanding refusers’
attitudes towards vaccination and health can bemade more difficult when refusals are based on

Conscientious Objection and Other Grounds for Vaccination Refusals Worldwide﻿

values foreign to HCPs. If the refusal makes little
sense to HCPs, it might be simply dismissed or
not be recorded or reported properly.
A lack of repor ts on religiously basedrefusals may be inter preted in a variety ofways. In developing countries, this gap may be
attributed to less attention paid to non-medical
factors such as human rights, including theprinciple of informed consent. Some countries
may not be well-prepared to evaluate religiosity
in public policy. They need to consider how todeal with potential religious refusal, for few
studies on reasons for refusal in countries outsideof the US discussed criteria as sophisticated as
those used to categorize such reasons than thoseused by researchers in the US. Moreover, someauthors in the search results were not based inareas targeted in their research. Unless they comefrom the targeted area, there remains a possibility
that some authors are not knowledgeable about
the religio-cultural practices and beliefs in thearea. Also, partly because PubMed was used
for the present study and articles listed in the
database were written mostly by those trainedin scientific fields related to health care andalso because much attention to religions may
undermine chances of being published in medical
journals, due attention may not be paid to religiocultural aspects of people’s behaviors.
4.2 Contradictory research reports
A n u m b e r of c a s e s t u d ie s r e p o r t i n g o nvaccination refusals within the same country
produced results that were incoherent andcontradicted each other. Such examples include
contradiction in the reports on religious refusals
in Nigeria and Pakistan. These contradictions
and incoherence may have arisen for a numberof reasons. One explanation is that conflicting
re por t s on t he sa me cou nt r y may ref lectdifferences in the region or sample populations
studied or differences in the time in which
vaccination refusal in a given country was
examined. Another possible explanation forcontradictory results is a lack of attention,
by some researchers, on the religious aspectsof va cci n at ion ref u sal. Agai n , HCPs a reusually not k nowledgeable about religious
teachings or traditions and they are not cultural
anthropologists. One conspicuous and relevantt rend fou nd i n t he l ite r at u re, relat i ng to

Yutaka KATO

contradictions and incoherence, is that reasons
for refusal are used and measured by scholars
in very different manners. For example, survey
and interview questions that ask about a refuser’s“lack of confidence” rely on a rather superficial
and vague construct in need of further clarity,
as perceptions of “confidence” may concern
the safety and effectiveness of vaccines, theirreadiness (i.e. they feel they have enoughknowledge to move forward to take vaccinations),
and so forth. To prevent such inconsistencies
of wording in asking about the reasons forrefusal considered by researchers, well-designed
qualitative surveys should precede quantitative
surveys that typically feature questionnaire
surveys, so that the latter form of research, inbuilding on the factors identified by qualitative
surveys, can develop survey questions andpossible answers in a way that is more relevant toa given context. In this way, quantitative survey
results will be more meaningful. Given the broad
spectrum of reported grounds for refusal, without
prior insight into specific grounds for refusal,
sound quantitative analysis is hardly feasible.
Further inquiry into the cause of contradictory
results will be necessary to reach any conclusion
about the independent or combined role of theabove factors in producing contradictory results
across case studies on the same countries.
4.3 Informed consent, integrity of body,and harm to others
As a conceptual instrument, informed consent
has been developed and applied to avoid harmto persons through integrating autonomy andself-determination in health care. Vaccination
involves minimal but actual invasiveness tothe human body. Thus, it may appear to theeyes of each person receiving the vaccination
as a form of medical intervention involving
potential harm analogous to other health care
procedures. In healthcare, avoiding harm to thebody or protecting the integrity of the body isof paramount concern. However, vaccination
as a collective intervention has derived from a
distinct context which is foreign to the notion of
informed consent. To achieve public health goals,
we need to reconcile the concepts of informed
consent and public health goals. Moreover, within
the context of vaccination, there are nuanced
19

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

relations between individual choice and the harm
principle. 66 In another wording, John Stuart
Mill’s Harm Principle stipulates that “... people
should be free to act however they wish unlesstheir actions cause harm to somebody else.”
One problem is that a vaccination refusal of one
person does not necessarily constitute direct
harm to others because of “herd immunity” or“community immunity.” When generalized,
however, a vaccination refusal can pose a threat
to the public health and thus constitute harm toothers. From this viewpoint, sporadic refusal
by individuals seems more justif iable thanconsistent refusal by groups of individuals.
When vaccination refusal is exercised by people
belonging to the same group, tolerance is lesslikely, contrary to regulations in some American
states that require affiliation to religious groups67.
4.4 Risk perception and the free-rider
problem
As perceived risks of infections become smaller,
other rationales for refusing vaccinations suchas religious beliefs may become more prevalent.
There is a possibility that more people worldwide
will refuse vaccinations in the future, as risks ofinfections appear smaller and informed consent
or other rights are perceived as more important.
This suggests that it is advisable to monitor more
carefully grounds of refusals and to track thesources of information.
With regard to risk perception in particular,
while low risks (probabilities) of harm may
appear insignificant to policymakers, the generalpublic may interpret such risks in a very different– and not necessarily illogical – manner. For
example, in Japan, approximately 20 persons dieannually because of being hit by lightning strikes.
Despite this small number of deaths, this risk iswell-known among golfers and anglers, with suchgroups taking precautions. They avoid standing
in a field or near a very tall tree. There is nothing
illogical about being concerned with risks, even if
they are unlikely and rare. Refusing vaccination
may be rational in terms of risk perception
as long as they can believe that they will beprotected by “herd immunity” or “community
immunity” (or they may simply believe that thetargeted infection will remain insignificant as in
the cases of some influenza vaccine cases), but
20such refusal may be perceived as free riding.
A s f a r a s t h e f r e e - r i d e r p r o bl e m i s
concerned, free-riders take advantage of herd
immunity. To put it another way, free riding is
made possible by herd vaccination. Thus, when
free riding occurs because of religious beliefs
shared by groups of people who gather in one
place, religious beliefs may negate the protection
afforded by herd vaccination by increasing thenumber of unvaccinated individuals in a given
religious community. On the other hand, clerics
can mobilize and motivate people and makefollowers behave in a new way. One possibility isthat organizations of health professionals attempt
to persuade religious leadership, as those leaders,possibly being older and having no young
children, may not be usual targets of persuasion
by health professionals. And successful cases(exemplified in reports by Chan et al. and Ruijs
et al.) do exist. Religious beliefs may influence
free riding by promoting virtuous behaviors that
promote vaccination.
4.5 Implications for Japanese society
As the number of im migrants and foreign
residents has been growing rapidly, with someof them possibly retaining their religious andcultural beliefs,68 due attention to the potential
factors that can affect health behaviors of thosefrom other countries must help predict refusal
or hesitancy behaviors and consider measures.
Nevertheless, as discussed in this study, without
sensitivity and attention, factors underlying
people’s vaccine hesitancy and refusal, including
religiosity, can elude the attention of health care
professionals.

5. Conclusion
Despite the great contribution of vaccinationt o h u m a n i t y, p e o p l e w o r l d w i d e r e f u s evaccination for various reasons. Antipathy
against vaccination today can pose a great
threat to public health in the area. Relying on
the classification used in the US, this research
examined articles using PubMed. The numbersof articles on vaccine refusal published each year
has been gradually increasing, but presumably
has started to decrease around 2017. From ageographic perspective, the present study foundthat refusers are ubiquitous and are found inConscientious Objection and Other Grounds for Vaccination Refusals Worldwide﻿

countries where vaccination is both mandatory
and voluntary. However, with regard to thegeographic focus of research, there were lower
ratios or reports on vaccination refusers in places
outside of the US, compared to publications in the
medical field in general. One possible explanation
for the scarcity of reports outside the US may bethat the international community does not shareenough information on the vaccination status
quo elsewhere. This absence of geographicallyconsistent conscientious objection arguments
apparently has contributed to public health goals.
As a qualitative research study, the numbers
and ratios of articles associated with each reason
for refusal were not counted. Instead, the natureof refusals and related themes that recurred in theliterature were identified and categorized. The
majority of the reasons cited were not religiousor philosophical, with reports of religiously
based refusals rare and anecdotal. The dearth ofreporting on religious refusals can be interpreted
in multiple ways, including an inability toevaluate religiosity in public policy. Future
research needs to consider how the international
community should deal with religious refusals. It
is recommended that researchers monitor more
carefully the grounds for refusals and track thesources of such rationales. There is a possibility
that more people will refuse vaccinations in the
future, as risks of infectious diseases appear
smaller and informed consent and other humanrights rise in importance. Religions can function
as a catalyst for non-religious refusals. On theother hand, religious affiliation and clerics
may help mitigate the free-riding problem, forexample. Although the number of publications
on vaccination shows a sign of decrease inrecent years, consistent and close attention to
the reasons for vaccination hesitancy and refusal
can help improve the public health situation,
while paying due attention to the religio-cultural
aspects of people’s behaviors.
The limitation of the study
T h e l ow a v a i l a b i l i t y of r e l e v a n t a r t i cl e ssignificantly limited feasible research designs.

Yutaka KATO

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44 Wong, L. P. (2011). Knowledge and attitudes
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45 Chan, H. K., Soelar, S. A., Md Ali, S. M., Ahmad,
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Costa-Pinto, J. C., Willaby, H. W., Leask, J., Hoq,
M., Schuster, T., Ghazarian, A., O’Keefe, J., &Danchin, M. H. (2018). Parental Immunisation
Needs and Attitudes Survey in paediatric hospital
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Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019clinics and community maternal and child healthcentres in Melbour ne, Australia. Journal of
Paediatrics and Child Health, 54(5), 522-529.
58 Helps. C., Leask, J., Ba rclay, L., Ca r ter S.
Understanding non-vaccinating parents’ views
to inform and improve clinical encounters: aqualitative study in an Australian community. BMJ
Open. 2019 May 28;9(5)		 Gianfredi V, D’Ancona F, Maraglino F, Cenci
C, Iannazzo S. Polio and measles: Reasons of
missed vaccination in Italy, 2015-2017. Ann Ig.
2019 May-Jun; 31(3):191-201.
59 Martinez-Diz, S., Romero, M. M., FernandezPrada, M., Piqueras, M. C., Ruano, R. M., andSierra, M. F. (2014). Demands and expectationsof pa re nt s who ref u se va cci nat ion s a nd
perspective of health professional on the refusal
to vacci nate. Anale s de Pediat r ía (English
Edition), 80(6), 370-378.
60 Norton, S.P., Scheifele, D.W., Bettinger, J.A., andWest, R.M. Inf luenza vaccination in paediatricnurses: Cross-sectional study of coverage, refusal,
and factors in acceptance. Vaccine. 2008 Jun 2;
26(23):2942-8.
		 Delamater, P.L., Pingali, S.C., Buttenheim,
A.M., Salmon, D.A., Klein, N.P., Omer, S.B.
		 Elimination of Nonmedical Immunization
Exemptions in Califor nia and School-Ent r y
Vaccine Status. Pediatrics. 2019 Jun; 143(6).
		 Mendes Lobão W, Duar te FG, Bur ns JD,
de Souza Teles Santos CA, Chagas de Almeida
MC, Reingold A, Duarte Moreira E Junior. Low
coverage of HPV vaccination in the national
immunization programme in Brazil: Parental
vaccine refusal or bar riers in health-ser vice
based vaccine delivery? PLoS One. 2018 Nov 12;
13(11):e0206726.
61 Ibid.
62 Buttenheim, A. M., & Asch, D. A. (2013). Making
vaccine refusal less of a free ride. Human Vaccines& Immunotherapeutics, 9(12), 2674-2675.
63 Diekema, D.S. Provider dismissal of vaccinehesitant families: Misguided policy that fails tobenefit children. Hum Vaccin Immunother. 2013
Dec; 9(12):2661-2.
64 Buttenheim, A. M., et al., op. cit. note 57.
65 Navin, M.C. et al.
66 Mill, J.S. (1859). On liberty. London: John W.
Parker and Son.
67 The History of Vaccines: An Educational Resourceby the College of Physicians of Philadelphia.
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Vaccination Exemptions. Retrieved from https://www.historyofvaccines.org/index.php/content/
articles/vaccination-exemptions (Accessed on
October 29, 2019)
68 Osumi, M. Number of foreign residents in Japanrose 6.6% in 2018, while number of overstayers
grew almost twice as much, government datashows. The Japan Times. Mar. 22, 2019. https://www.japantimes.co.jp/news/2019/03/22/national/
nu mb e r-fo r e ig n - r e sid e nt s -ja p a n - r o s e - 6 - 6 2018-number-overstayers-grew-almost-twicemuch-government-data-shows/#.XXZTkij7TIU(Accessed on September 2, 2019)

Healthcare Interpreters’ Advocacy for Patients in Japan﻿Keiko HATTORIRESEARCH REPORT

Healthcare Interpreters’ Advocacy for Patients in
Japan
Keiko HATTORI
Nihon Institute of Medical Science
Email: keiryuu1104@yahoo.co.jp

Abstract
The purpose of this study is to discuss the boundary of the healthcare interpreter’s role in the conductof patient advocacy in Japan and consider problems with the healthcare interpreter’s role as an
advocate for patients with insufficient fluency in Japanese.
Interviews were conducted with people in the healthcare interpreting field relating to theJapanese standards of conduct for healthcare interpreters compared with the Japanese codes of
ethics for healthcare providers, with the focus on patient advocacy.
Relating to patient advocacy conduct, some differences were found between the codesof ethics for healthcare providers and the standards for healthcare interpreters. The interviews
demonstrated that the healthcare interpreters have not actively performed a patient advocacy role.
Although the standards for healthcare interpreters mention patient advocacy, the standards
do not specifically allow positive advocacy by the interpreters. One reason for this lack of enforcement
is that, at present, healthcare interpreting is not an officially qualified profession in Japan, and only
a limited number of untrained or volunteer interpreters are currently working in various healthcare
settings, in Japan. Also, not all healthcare providers have a clear understanding of the healthcareinterpreter’s multiple roles. The boundary of the healthcare interpreter’s role as a patient advocate has
been ambiguous. Healthcare providers also need to recognize the boundary of the interpreter’s patientadvocacy role.
Keywords: advocacy, foreign patients, code of ethics, healthcare interpreting, interviews

1. Introduction
The number of foreigners coming to Japan toseek work or other visas has been increasing
since the latter half of the 1980s, and 2.5
million registered aliens, including permanentalien residents, are presently living in Japan( I m m ig r at ion Ser v ices Agency of Japa n ,2018). Communication difficulties are often
an unavoidable part of daily life of a foreign
resident, in Japan. In particular, communication
in medical settings is very difficult for patientsand family members without basic f luency
i n Japa nese. D ue to such com mu n icat ion
difficulties, many such patients forgo access tocare, even though they want or need medicalcare (Nishimura, 2011). Language bar riers

often compel some patients with an insufficientcommand of Japanese to compromise the qualityof healthcare provided them. The fact that thesepatients cannot sometimes receive good medicalcare in Japan when their health or life is at risk
indicates that their human rights to treatment
and consideration are at risk. To overcome thecommunication problems for such patients inthe medical setting, a demand for healthcareinterpreters has been increasing, and the Japanese
government has striven to establish the positionof ‘healthcare interpreter’ as an integral part of
the healthcare setting. The 2020 Tokyo Olympics
is thought to be a large contributing factor,
further increasing a demand for healthcareinterpreting. Healthcare interpreters have tobe equipped with sophisticated skills, not only
in interpreting different languages, but also by
25

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

being sensitive to differing cultures, historical
traditions, and expectations of both healthcare
providers and patients, and, as a result, healthcareinterpreters play a difficult and complicated rolein the medical setting (Haffner, 1992).
S o m e s t u d ie s d e m o n s t r a t e , t h r o u g hparticipant observation, discourse analysis, andinterview survey, that the healthcare interpreter
not only serves as a verbal conduit, but plays
va r ious other roles, such as a facilit ator,
positively participating in the conversations
between the healthcare provider and the patient
for their mutual understanding, as well as
helping participants understand the differencesin cultural beliefs and values. (Angelelli, 2004;
Wadensjö, 1998; Nadamitsu, 2008). W hen
a healthcare interpreter encounters relevant
cu lt u r al d i f fe re nce s, ca se s re p or t how ahealthcare interpreter explains to a physician
the cultural background of a patient and asks
the physician some supplementary questions
when the interpreter knows that the patient does
not understand the physician’s explanation, due
to differences in cultural beliefs (Kaufert &Putsch, 1997). In a study of Wadensjö (1998) on
dialogue interpreting of healthcare interpreters,
the healthcare interpreter is recognized not
only as a language interpreter, but also as a
facilitator of interactions in the communication.
In fact, Angelelli (2004) conducted an interview
survey with healthcare interpreters who were
working for a hospital in California; interviewees
described how healthcare interpreters facilitate
between Latin-American patients and American
healthcare providers. The healthcare interpreters
facilitated the differences in medical culture toachieve a smooth communication as a liaison
bet ween t he t wo pa r t ies. Bischof f (2012)
investigated the roles of the interpreters working
in a women’s hospital. It is pointed out thatthe interpreters have the function of building
and supporting an effective patient-provider
relationship by careful intervention, to avoid
the conf licts between patient and healthcare
provider. Some examples of empirical evidenceshow that healthcare interpreters provide patientsand healthcare providers with supplementary
infor mation about cultural backgrounds ofeach participant and act as facilitators in theconversations between the two parties (Kaufert& Putsch, 1997; Wadensjö, 1998; Angelelli, 2004;
26

Bischoff, 2012). Some research suggests thatinterpreters and sign-language interpreters can bejustified in adding supplementary explanations
about the cultural values and practices, inorder to obtain mutual understanding among
participants in asymmetrical power relationships,
such as the patient-provider relationship in the
medical setting. Other studies show that theinterpreter’s roles vary, depending on the purposeof interpreting (Angelelli, 2004; Kaufert &Putsch, 1997; Roy, 2000).
Issues such as “accuracy,” “neutrality,”and “confidentiality” are common in the ethicalcodes of practice for interpreters in various
fields, e.g., community interpreting. The ethicalcode for healthcare interpreters refers to theissue of “advocacy”, in addition to the above
issues (Mizuno, 2008). In this sense, the ethicalcode of the International Medical Interpreters
A s s o c i a t i o n ( I M I A) , i . e . , a n A m e r i c a norganization for healthcare interpreters, is typicalbecause it defines the conduct of advocacy not
as impairing neutrality, but rather making such
advocacy necessary for patients’ health andwell-being. The term “advocacy (of rights)”
is defined as ‘proposal’, ‘support’, ‘pleading’,‘speaking’ on behalf of someone. The term
“advocacy” in the ethical code refers to aprocess in which a particular expert stands by
the socially disadvantaged person to support
actively, when needed, and sometimes speak onbehalf of patients, as well as take the initiativein arguing against any potential for social
inequalities, unfairness and injustice (Registered
Nurses Association of British Columbia, 1995).
Namely, advocacy strives to protect the rights andbenefits of others such as socially disadvantaged
persons who find it difficult to claim and fightfor their rights by themselves. In healthcare andwelfare settings, special attention has been paid
to the conduct of advocacy to protect the rightsof the socially disadvantaged, i.e., terminally illpatients, handicapped persons, bedridden elderly
persons, older patients with dementia and childpatients (Takayama, 2006).
Through discourse analysis of videotaped
hospital settings involving native Canadianpatients, healthcare providers and interpreters,
Kaufert & Koolage (1984) conclude that thehealthcare interpreters not only serve as language
interpreters and cultural mediators, but also

Healthcare Interpreters’ Advocacy for Patients in Japan﻿

as patient advocates, by explaining what thehealthcare providers say to patients in sucha way that the patients can understand. This
research is considered to be the first one referringto the patient advocacy role of the healthcare
i nt e r pret e r. Roat (2010) e mpha si ze s t hat
healthcare interpreters should function as patientadvocates for deepening mutual understanding
between the patient and healthcare provider andproviding appropriate healthcare information to
the patients.
Mizuno (2005) describes that it is too early
to incorporate the role of patient advocacy into
the code of ethics for healthcare interpreters,in Japan, because the measures for the relief ofthe victims of human rights violations are lessdeveloped in Japan than in the United State.
Mizuno insists that healthcare interpreters should
keep their neutral positions and strive to interpretaccurately, while patient advocacy should not
be added to the ethical codes of conduct for
healthcare interpreters. Oshimi (2010) suggeststhat the issues concerning when and how patientadvocacy should be conducted by healthcareinterpreters is still under discussion, and theinterpreters’ additional role of patient advocacy
has not yet been established internationally andacademically. Hale (2007) states that patientadvocacy by healthcare interpreters has notalways been positive for patient and medical
provider, even though the basic goal of both
healthcare provider and healthcare interpreter isthe same: to assist and save patients.
On the other hand, according to Takahashi(2009), it is natural that the healthcare interpreter
should stand on the side of the patient lacking
sufficient f luency in Japanese, to protect theperson’s rights and benefits, rather than remain
neutral. Iida (2012) points out that healthcareinter preters may encou nter many medicalcare situations requiring their intervention
and coordination, deviating from “neutrality”
and “impartiality.” Roat (2010) states that thehealthcare interpreter may be justified in beinga patient advocate when patient’s health, wellbeing, and dignity are at risk.
As mentioned above, discussion is currentlyu nde r way for a nd agai n st t he healt hca reinterpreter’s conduct of advocacy (Roat, 2010).
The healthcare interpreter’s role of advocacy
is, indeed, a controversial issue, and knowing

Keiko HATTORI

how presently active healthcare interpreters inJapan feel about the additional role would be
instructive. How do the healthcare interpreters
themselves recognize the role of advocacy in theJapanese medical settings? To find out, the author
collected and investigated descriptions relating
to advocacy in the Japanese standards of conduct
for healthcare interpreters. At the same time, theauthor collected and compared the codes of ethics
for healthcare providers dealing with patients ofother countries with the standards for healthcareinterpreters, focusing on the way of dealing with
the issue of advocacy. In addition, the author
tried to collect opinions and thoughts about
interpreter’s advocacy from the people actually
involved in healthcare interpretation.

2. Purposes
This study considers the healthcare interpreter’srole of patient advocacy as well as the scopeand boundar y of that role. In addition, thestudy highlights the problems related to thehealthcare interpreter’s role as patient advocate
for patients without sufficient f luency in theJapanese language, by examining the results ofan interview survey the author conducted withpeople actually currently involved in the medical
interpreting field. Finally, codes of ethics forhealthcare providers are compared in termsof how such patient advocacy was or was notconducted by healthcare interpreters.

3. Methods
3.1 Comparison of advocacy-related items
between codes of ethics for healthcare
providers and standards of conduct for
healthcare interpreters
For analysis, the author considered the following
Japanese codes of ethics for physicians, nurses,
and medical social workers as well as theJapanese standards for healthcare interpreters,
focusing on the conduct of advocacy.
1) Professional Ethics Guideline for Physicians(Japan Medical Association, 1998)
2) Code of Ethics for Nurses (Japanese Nursing
Association, 2003)
3) Code of Ethics for Medical Social Workers
27

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

(Japanese Association of Social Workers in
Health Services, 2005)
4) Standards for Medical Interpreters (Committee
to Review Standards for Medical Interpreters,
2010)- Japanese), also acting as the chief of anorganization for supporting foreign patients.
( D): A healt hca re i nt e r pret e r ( Engl ish Japanese) belonging to a healthcare interpretingorganization.

The Standards for Medical Interpreters 2010
were formulated by the Committee to Review
Standards for Medical Interpreters (established in
May 2010), with the aim of indicating the desired
levels of facilitation of the professional healthcareinterpreters (Nishimura, 2011). The author paid
attention to the codes of ethics for healthcare
providers and the standards for healthcareinterpreters because clinical ethics is today arequired subject for healthcare professionals
in Japan, and studying clinical ethics is alsoessential for the healthcare interpreter trainee.
Moreover, t h ree categor ies of healt hca reprofessionals - physicians, nurses, and medicalsocial workers - were selected because they were
found to be most closely related to patients withinsufficient fluency in Japanese and healthcareinterpreters, as mentioned in the Standards for
Medical Interpreters 2010.

3.2.2 Summary of interview survey
The interviews were conducted between Augustand September 2013. Only the author (i.e.,interviewer) and each interviewee gathered at
the place designated by the interviewee (i.e., theinterviewee’s workplace or a meeting room inthe community). A semi-structured interview
was conducted over a period of 40 minutes to
one hour, based on the interview guide, which
included the following questions: (1) Whatkinds of medical settings afford the healthcareinterpreter chances to act in the role of patientadvocate? (2) What do you think is the purposeof being a patient advocate? (3) How does yourorganization deal with the challenges of patientadvocacy in terms of healthcare interpreter
training? and (4) What do you think is the futureof patient advocacy by the healthcare interpreter?
The dialogues were recorded after obtaining
the interviewee’s consent. After the recorded
data were transcribed, the transcribed data werethen confirmed by each interviewee, to ensure
accuracy.
The author explained in advance to eachinterviewee that the interview results would
appear in a published ar ticle and that theinterviewees would be indicated only by thecorresponding alphabetical letter, so as not toidentify the individuals, the right to privacy
would be g u a ra nteed , a nd t he consent toparticipation in the survey could be withdrawn at
any time.

3.2 Interviews with people involved inhealthcare interpretation
To con side r t he pat ie nt a dvo ca cy by t hehealthcare inter preter, the author found it
necessary to collect the opinions from various
people act ually involved in the healthcareinterpreting field.
3.2.1 Subjects
The author sent e-mails to the healthcareinterpreting organizations listed on the home
page of the National Association for Medical
Interpreters (NAMI) to ask for interviews. Then,interviews were individually conducted with thefollowing four persons, (labeled A, B, C, and D),
who approved the purpose of this study.
(A): A phy sicia n , hold i ng a p o sit io n of
the director of a healthcare inter pretingorganization and currently using healthcareinterpreters in the medical setting.
(B): A director of a healthcare interpretingorganization.
(C): A healthcare inter preter (Por t ug uese28

4. Results
4.1 Advocacy stipulated in codes of
ethics for healthcare providers andhealthcare interpreters
A code of ethics is a guide for the professional
because it stipulates how to conduct oneself asa professional. A code of ethics also has social
significance because the mission and the roleof the professional will become known in thehealthcare community and society at large.

Healthcare Interpreters’ Advocacy for Patients in Japan﻿

The author strove to clarify the scopeof the healthcare interpreter’s and healthcare
provider’s patient advocacy, by comparing thestandards for healthcare interpreters and thecodes of ethics for healthcare providers, suchas physicians, nurses and social workers. Thosestandards of conduct for healthcare interpretersand healthcare providers, each stipulating themission, duty, and ethics of the professional
to indicate what they should aim at and what
they should not do to moderate their behaviors,
are also significant pledges to the healthcarecommunity and society at large. Thus, the author
thought that the comparison of those standards ofconduct for healthcare professionals could define
and clarify the scope and the boundary of therole in the advocacy conduct of each healthcare
professional. Specifically, using the keywords
such as “right to self-determination,” “rights ofpatients” and “advocacy,” the author extracted the
advocacy-related items from the codes of ethics
for physicians, nurses and social workers closely
related to patients without sufficient fluency inJapanese.
4.1.1 Professional ethics guideline forphysicians
Medicine and medical care shall be used tomaintain and promote people’s health as well as
to treat sick people. The physician shall recognize
the significance of his/her own responsibilities
and serve all people based on a love and concern
for humanity.
(Respect for and advocacy of patients’ rights)
The physician shall put the highest priority
on the patients’ benefit and strive to respect andadvocate patients’ rights. Patients are entitled
to receive impartial medical care, to obtain
information and choose medical care based on
self-determination, to refuse medical care, and toseek a second opinion. Every patient has a rightto privacy.
(Explanation of information about a patient’s
disease and the state of the disease to the patient
and the patient’s families)
In an accurate, honest, and understandable
manner, the physician is obligated to informpatients of the results of diagnosis, including
what the disease may be, how the disease will
progress, what kinds of examinations, andKeiko HATTORI

treatments should be provided.
4.1.2 Code of ethics for nurses
The nurse respects the life, dignity and rights ofall human beings.
In an equal and fair manner, the nurse
provides care to recipients in need of medical
assist ance, i r respective of the recipients’nationality, race and ethnic group, religion, belief,age, sex and sexual orientation, social status,
economic status, lifestyle, and health problems.
The nurse establishes a relationship of trustwith the individual recipient in need of nursing
care and provides nursing care based on thattrusting relationship.
The nurse respects patients’ right to know
and right to decide, and acts as an advocate foreach patient’s rights.
The nurse safeguards recipients in needof nursing care and ensures recipients’ safety
in cases where nursing care for the recipient ishindered and the recipient is at risk.
4.1.3 Code of ethics for medical social
workers(Dignity of human beings)
The social worker respects the unique andintrinsic worth of all people, irrespective of their
origin, race, sex, age, physical and psychologicalstate, religious and cultural background, social
status, economic status, and the like.
(Respect for a client’s right to self-determination)
The social worker upholds a client’s selfdetermination, and helps individual clients morethoroughly understand their rights and how best
to make good use of them.
(Coping with clients’ decision-making abilities)
The social worker always finds the best way to
advocate the rights and benefit of clients withincomplete decision-making abilities.
(Preventing violation of clients’ rights)
The social worker serves as an advocate forclients to prevent clients’ rights from being
violated in any case.
The social worker always finds the best way
to advocate the rights and benefit of those clients29

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019lacking sufficient decision-making capacity.
The conduct of advocacy for clients’ benefits
and rights by medical social workers is widelyextended to clients’ decision-making situations inhealthcare settings (including informed consent
and choice of alternatives) to clients’ social
problems, such as poverty and abuse that may
be associated with sickness and disability. The
social worker always makes an effort to be wellacquainted with the laws and systems concerning
advocacy of those with incomplete decisionmaking capacity and to protect those clients fromsuppression and theft as an appropriate advocate.
Members of our society may not always beaware of people without sufficient capacity for
self-determination. It is not only the legal andhealthcare systems, but also the medical social
workers’ keen sensitivity to human rights andthe courage to take action, when necessary, thatis needed to advocate for a person’s rights andbenefits. The social worker always strives to besensitive to and a guardian of human rights in thehealthcare field.
4.1.4 Standards for Medical Interpreters2010
4.1.4.1 Roles of the healthcare interpreter
The healthcare interpreter stands as a language
interpreter and a cultural mediator between thehealthcare provider and the patient who often
does not share the same language and may comefrom different cultural and social origins. As
well, the healthcare interpreter supports patientsso that patients can make decisions based on theirown intention and be provided with information
in a culturally sensitive and easy-to-understandmanner.
T h e h e a lt h c a r e p r ov i d e r s o m e t i m e scommunicates with the healthcare interpreter
as if the interpreter were one of the patient’s
family members. As well, the patient sometimes
implicitly expects the healthcare interpreterto act as an advocate for the patient. However,advocating either for the healthcare provider or
the patient is not an inherent, but an acquired,role of the healthcare interpreter.
4.1.4.2 Healthcare interpreter’s role asadvocate
The fundamental role of the healthcare interpreter
is to serve as a language mediator. The healthcare
30

interpreter, however, may act as an advocate
for the patient, when aware of the fact that thepatient’s human rights are flagrantly violated.
T he healthcare i nter preter acts as an
advocate for the patient when some problem
remains unsolved and the patient’s rights are
subject to suppression, even after the interpreter
assists in bridging the cultural gap between thepatient and the healthcare provider by meansof “accurate interpreting” and “explanation inconsideration of cultural differences.”
4.2 Interviews with people involved inhealthcare interpretation
Various ideas about the healthcare interpreter’s
conduct of advocacy were ext racted f rom
the semi-structured interviews with the four
persons (A, B, C, and D). The author classified
the transcribed data into the following three
categories: 1) interpreter’s conduct regarded
as patient advocacy; 2) negative views of theinterpreter’s advocacy; and 3) prospects for theinterpreter’s advocacy.
4.2.1 The interpreter’s conduct regarded as
patient advocacy- (A): “The interpreter may act as an advocate insettings where the physician cannot understandthe patient’s situation without receiving vital
infor mation about the patient th rough theinterpreter. In our organization, for example,
interpreters are trained to obtain the patient’s
consent and tell the physician that the patient is,for instance, obligated to fast during to the monthof Ramadan” as a requirement of Islamic faith.
- (C): “After a physician saw a Japanese woman
infected with HIV, the physician said in Japanese
to her partner, who was a South American,‘You must have infected her with AIDS.’ I
promptly asked the physician for confirmation,‘May I translate what you said?’ The physician
answered, ‘You may not translate what I said.’
I usually try to ask physicians for confirming
what they mean if their words imply prejudiceabout the patients, the patients’ nationality, andthe like. I think it may be ... an example of patientadvocacy, although it’s trivial.”- (D): “I ask the male physician to leave hisseat when the female patient is prohibited fromcontact with the male physician for religious

Healthcare Interpreters’ Advocacy for Patients in Japan﻿

reasons. The interpreter also pays attention to
the patient. If the patient does not say anything, I
always try to be attentive.”- (D): “The healthcare interpreter is admitted
when the patient has some different culturalb a c k g r o u n d o r s u c h a s it u a t io n m ay b e
disadvantageous to the patient. This is the
conduct of patient advocacy, I think.”
4.2.2 Negative views of the interpreter’s
advocacy- ( B): “I n a dd it ion to i nt e r pret at ion , t heinter preter is allowed to conf ir m only thepatient’s and his/her family’s statements, andthe physician’s statements. The inter preter
should not speak or act on the interpreter’s own
initiative. Most of our interpreters are not at aprofessional level [of proficiency], and they needsome assistance or support in the actual settings.
That is the reason why patient advocacy is notcommitted to the interpreter.”- (A): “The interpreter should neither persuade
nor induce the patient to do something becausesuch actions will not necessarily be advantageous
to the patient. The interpreter should support
what the patient is going to do. It is strange thatthe interpreter should take the initiative in the
conduct of advocacy. Properly, the interpreter
should cope with the advocacy of the patient inaccordance with the patient’s intention.”- (A): “The interpreters… [in] our organization
are not able to cope with patient advocacy
without the social worker. Our organization
does not deny patient advocacy, but it prevents
interpreters from acting as the advocate, at theindividual interpreter’s discretion.”
4.2.3 Prospects for the interpreter’s
advocacy- (A): “Our organization requests interpreters
to introduce the patient to the person in chargeof advocacy, that is, the social worker, whennecessary.”- (A): “Definitely, patient advocacy is very
impor tant. I wonder how to divide patientadvocacy between the healthcare interpreterand the healthcare provider. The healthcare
provider should know how to use the healthcareinterpreter. Advocacy of foreign patients’ rights
is an important problem. So, it’s difficult todetermine how the two parties share the task of

Keiko HATTORI

advocacy. The presence of the interpreter is in
itself the conduct of advocacy, I think.”- (B): “We should first pay attention to accurateinterpretation and then think of patient advocacy.
In light of the current situation of healthcareinterpretation, this argument is too premature in
Japan. To talk about patient advocacy now may
confuse the priority.”- (C): “With certain practical training of how to
act as the advocate, specifically for patients withHIV and terminal cancer or infant patients, notall, but some, of the trainee interpreters can learn
to act as advocates, I think.

5. Discussion
5.1 Advocacy by healthcare providers
The code of ethics for physicians stipulates thatthey should assign top priority to the benefitsof the patients, and they should be responsible
for patients’ self-determination, by explaining
mat ters to the patients in plain lang uage.
The codes of ethics for nurses and medicalsocial workers also stipulate not only thatthey should respect and advocate the patients’
self-determination, but also that they should
advocate for the patients when patients are at
risk. According to the ethical code for social
medical workers, social workers shall listen to
the suppressed cries of the patient which are too
faint to hear and advocate for the patient’s benefit
and rights. The ethical code for medical social
workers also stipulates that they shall continually
make an effort to maintain a keen awareness ofhuman rights and be guardians of human rights
in the healthcare field.
As mentioned above, the Japanese ethicalcodes for physicians, nu rses and medicalsocial workers deal with advocacy in different
expressions. This is because the position, the role,and the relation with patients vary, dependingon the profession. In particular, medical social
workers act as consultants and advisors about
patient’s ever yday concer ns and economic
problems. Medical social workers stand so
close to patients that they can become the mostfamiliar advocate for the patients. Medical social
workers have a role in protecting patients withan insufficient fluency in Japanese when their
human rights are suppressed or violated.
31

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

5.2 Advocacy by healthcare interpreters5.2.1 Advocacy stipulated in the standards
T he st and ards for healthcare i nter preters
for mulated by the Japanese Association of
Medical Interpreters do not specify advocacy as
the healthcare interpreter’s role and mention that
it is left to the judgment of individual healthcareinterpreters, whether to act as an advocate or not.
The Japanese standards of practice forhealthcare interpreters do not recommend thatinterpreters play an active advocacy role. Oneof the reasons for this view is that the current
healthcare interpreters have not yet reachedprofessional levels, as a whole, in Japan. Thereis no official qualification system for healthcareinterpreters and many untrained interpreters andvolunteer interpreters are currently working invarious medical settings. As indicated by Roat(2010), there is also an idea that the primary roleof the interpreter is to interpret accurately, while
the advocacy of patient’s rights is not included in
the occupational scope of the interpreter.
The healthcare inter preter has not yet
been recognized as a professional position in
Japan, and the Japanese standards of practicefor healthcare interpreters stipulates that thehealthcare interpreter should avoid serving as anactive advocate for patients. In contrast to this,some healthcare interpreter organizations outsideof Japan stipulate the role of advocacy for patientsas one of the interpreter’s roles, consistent withhis or her professional ethical code. The ethicalcode formulated by the National Council onInterpreting in Health Care (NCIHC), one ofthe organizations for healthcare interpretersin the United States, stipulates that when thepatient’s health, well-being, or dignity is at
risk, the interpreter may be justified in acting
as an advocate. The ethical code (1986) by theInternational Medical Interpreters Association(IMIA), another American organization for
healthcare interpreters, specifies advocacy as theinterpreter’s role, stipulating that the interpreters
will engage in patient advocacy and in theintercultural mediation role of explaining culturaldifferences or practices to healthcare providers
and patients only when appropriate and necessary
for communication purposes, using professional
judgment. Although there is a subtle differencein the way of viewing the conduct of advocacy
32

between the two codes, these two ethical codes
similarly describe that the healthcare interpreter
may, and even should, act as the advocate,depending on the medical setting.
Using an example of patient advocacy
by a medical interpreter, let us consider theguideline described by the NCIHC suggesting
the interpreter may advocate on behalf of aparty or group to correct mistreatment or abuse.
For example, an interpreter may alert his or her
supervisor to patterns of disrespect towards
patients. The above-mentioned interpreter’s
conduct of advocacy is to alert the authority,
on behalf of patients, to protect them when
patients’ human rights are violated. In this case,the interpreter stands on the side of the patient,that is, on the opposite side of the healthcare
providers. Judgment in such a case is considereddifficult.
In the United States, there are facilities
for training healthcare interpreters and official
qualif ications for professional healthcareinterpreters. Further, the professional healthcareinterpreters in the United States are requested toattend ongoing training programs to keep theirknowledge and skills up to date and at the desired
levels. While training, healthcare interpreters
learn when, where, and how best to conduct
themselves as advocates in a professional manner.
Thus, in the United States, healthcare interpreters
can work as medical professionals, together
with other healthcare providers. Accordingly,
healthcare interpreters in the United States are
expected to conduct themselves as advocates,
as would other healthcare providers, when thepatients are found to be at a disadvantage.
In contrast to the United States, healthcareinterpreters in Japan are not recognized as
professionals. The Japanese standards forhealt hca re i nt e r pret e r s de sc r ibe t hat t hehealthcare interpreter acts as an advocate for thepatient when the problem remains unsolved andthe patient’s rights are subject to suppression,even after the interpreter assists in bridging
the cultural gap between the patient and thehealthcare provider. As mentioned above, whenacting as the advocate for the patient without
sufficient fluency in Japanese, the interpreter’s
neutral stance with respect to the healthcare
provider will, inevitably, be broken. Namely,
the conduct of advocacy conf licts with theHealthcare Interpreters’ Advocacy for Patients in Japan﻿

interpreter’s role of “neutrality.” Therefore,
professional training is needed, to learn when,how, a nd i n what m a n ne r t he he alt hca reinterpreter should act as an advocate. According
to the repor t of Hale (2007), an untrained
healthcare interpreter acted as an advocate fora patient without regard to “neutrality” and“accuracy,” and consequently, the interpreter’s
conduct did not help the patient; in fact, therelationship of trust with the healthcare provider
was impaired, leading to a medical mistake.
Hale (2007) shows that a healthcare interpreter’s
ad hoc patient advocacy that compromises
neutrality and accuracy may place the patient at a
disadvantage.
5.2.2 Healthcare interpreter’s advocacy
conduct found in interviews
In the interview survey, the interviewee (C)said: “After a physician saw a Japanese woman
infected with HIV, the physician said in Japanese
to her partner, who was a South American,‘You must have infected her with AIDS.’ I
promptly asked the physician for confirmation,‘May I translate what you said?’ The physician
answered, ‘You may not translate what I said.”Interviewee (C) regarded the above-mentioned
actual interpreter’s conduct as advocacy for thepatient. Interviewee (C) acted as a Portuguese
interpreter and was the leader of an organization
suppor ting HI V patients. Inter viewee (C)thought that patient advocacy was essential forthe interpreters belonging to his organization
because they specialized in interpreting for HIV
patients. All the interpreters of his organization
were experts with 10 years’ or more experience inthis field, and they had a common understandingof cases where active advocacy was needed,through the training system his organization had
prepared. In the case given by interviewee (C),the interpreter advocated for the patient by raising
his voice against the physician’s discriminatory
remarks to the patient. This kind of advocacy
by the interpreter is regarded as similar to the
advocacy of the medical social worker who
actively advocates for the patient, to protect thepatient from the physician’s accusatory remarks,
and the like.
I nt e r v iewe e s (A) a nd ( D) me nt ione d
advocacy challenges related to a patient’s
religious affiliation. Interviewees (A) and (D)Keiko HATTORI

identified a justified advocacy role where some
cultural gap between the healthcare provider andthe patient was thought to be disadvantageous
to the patient. The healthcare interpreter is
act ually requi red to work as an advocate
for the patient without sufficient f luency inJapanese, by alerting the healthcare provider ofcommunication difficulties relating to language
and cultural differences, to ensure that the patient
receives appropriate medical care.
As demonstrated by the interview results,
interviewee (B) pointed out that support of thecoordinator was necessary in the actual settings
for the majority of interpreters belonging to B’s
organization, and accurate interpretation was a
top priority for those interpreters at the present
stage. Interviewee (B) insisted that ad hoc patientadvocacy by untrained healthcare interpreters
should not be conducted. Interviewee (B)’sremarks can be supported by the fact that B’s
interpreting organization is composed largelyof non-Japanese staff who are adequately fluent
in Japanese, living expat communities in Japan,
a situation that also applies to other healthcaretranslation organizations. In Japan, a considerable
number of foreigners from expat communities
have a good command of Japanese and play avital role in interpreting in their communities inJapan. Yet some of them have little experienceof work ing as the inter preters and others
undergo little training for accurate interpreting.
Even children of the expat communities areoften recruited as interpreters, because of theircommand of Japanese. The interviewee (B)insisted that it was still too soon to argue over
the advocacy conduct by untrained interpreters
who still had difficulty in translating verbatim. In
light of the interpreters of (B)’s organization, theinterviewee (B)’s opinions seem reasonable.
The results of the interviews show theambiguous scope of the healthcare interpreter’s
advocacy conduct. Specifically, the advocacy
conduct of the healthcare interpreter varies,
depending on the interpreter’s organization,for example, whether to interpret a healthcare
provider’s statement or not, explain or fill in thecultural gap, or act as a patient advocate.
5.2.3 Different views on the healthcareinterpreter’s advocacy conduct
Roat (2010) descr ibes that the healthcare
33

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

interpreter should not conduct advocacy when
the point in question is based on the physician’s
professional opinion, such as diagnosis, when
there is no oversight or misunderstanding; when
the patient no longer wants advocacy; when
the conduct of advocacy may lead to abuse ofconfidentiality; or when the interpreter’s agent ororganization specifically prohibits the interpreter
from serving as an advocate. Further, accordingto Roat (2010), it is most important that thehealthcare interpreter be recognized as one ofthe professional members of the medical team,
not an outsider, so that the healthcare interpreter
can learn when and how to conduct advocacy.
Hale (2007) states that the healthcare interpreter
can understand cultural differences between thehealthcare provider and the patient to cope withdiversity in the medical setting, if the interpreteris entitled to participate in the team conference
as a member of the medical team and obtain
information about the patient in advance.
As stated by interviewees (A) and (B) in theinterview survey, one of the reasons why they do
not approve healthcare interpreters’ advocacy forpatients is that the majority of existing healthcareinterpreters are still insufficiently trained tojudge by themselves. An unskilled healthcareinterpreter’s actions as an advocate for a patient
without sufficient fluency in Japanese may help
to cause medical mistakes and entail a risk to
the patient’s health. For this reason, Japanesestandards for healthcare interpreters do not admit
the interpreter to conduct advocacy.
Even so, even extensive training cannot
always adequately prepare inter preters forpatient advocacy. Hattori (2017) conducted aquestionnaire survey of healthcare providers’awareness and healthcare interpreters’ awarenessof the inter preter’s roles. According to thesurvey, the healthcare providers were awarethat healthcare interpreters had the function of
speaking on behalf of patients and explaining, in
simple terms, physicians’ intended meaning topatients (Hattori, 2017). As demonstrated by thesurvey results, the healthcare providers ask theinterpreters not only to interpret the dialogues
accurately, but also act as advocates. There is a
gap in awareness of the healthcare interpreter’sroles between the healthcare providers and thehealthcare interpreters. Therefore, it becomes
unclear in the medical setting who should
34

conduct advocacy for patients without sufficient
f luency in Japanese or when and how such
advocacy should be performed.
In some cases, healthcare providers ask
healthcare interpreters to act as advocates forpatients without sufficient fluency in Japanese.
According to the Japanese standards, on the other
hand, the interpreter’s advocacy is left to eachinterpreter’s discretion. Moreover, according
to inter viewees (A) and (B), for instance,
the directors of the healthcare inter pretingorganizations insist that advocacy for patientswith insufficient f luency in Japanese should
be avoided and done only at each interpreter’s
discretion. In brief, the healthcare interpreter’s
advocacy is viewed differently, depending on
the healthcare provider, the standards of conduct
for healthcare interpreters, and the persons
concerned in healthcare interpretation.
5.2.4 Future tasks related to thehealthcare interpreter’s advocacy
With the increase in demand for healthcareinterpreting in Japanese society, healthcareinterpreters will likely encounter a greater needfor advocacy in the medical setting. Copingwith this situation requires strengthening theofficial qualification system and improving thetraining system for healthcare interpreters aswell as guaranteeing and upgrading their levels
and skills in all relevant areas. As pointed out by
Ohno (2014), if the current Japanese standards forhealthcare interpreters are supplemented with theitems relating to the professionalism and scopeof the role, such as existing standards of various
countries, the Japanese standards will be moreconsistent with the international community’s
standards. Doing so would contribute to therecognition of healthcare inter preting as aprofession, which in turn would improve thehealthcare interpreter’s standing in the Japanese
healthcare system and society at large. Also,
healt hca re prov iders should cooperate tomeet these challenges. Even when the current
healthcare interpreters reach a professional
level, through the introduction of an official
qualification system and an effective training
system, advocacy for patients without sufficient
fluency in Japanese may still be compromised.
To counter this possibility, healthcare providers
must understand the healthcare interpreter’s roles

Healthcare Interpreters’ Advocacy for Patients in Japan﻿

and how best to utilize the healthcare interpreterin the medical setting. Kumamoto (2006) insiststhat advocacy in healthcare settings should be
conducted by some professionals, in relation toa patient’s rights. Such advocacy should be donein consideration of the following three points:(1) what the patient’s rights are; (2) how thepatient’s rights may be violated under the current
circumstances; and (3) what kind of action should
be taken to advocate the patient’s rights.
In addition to the obligatory training to
be designed for healthcare interpreters, certaint rai n i ng prog rams a re also necessa r y for
healthcare providers so that the providers canlearn how to use the healthcare interpreter in the
medical settings and understand the scope of thehealthcare interpreter’s role. After that, healthcare
professionals, including healthcare providers
and healthcare interpreters, should discuss anddecide how best to share the conduct of patientadvocacy.
5.2.5 Advocacy for patients withinsufficient fluency in Japanese
The author believes that advocacy should benefit
the patient without sufficient fluency in Japanesein such a way that the thoughts, concer ns,
and questions of the patient reach healthcare
providers and that the voice of the healthcare
provider is adequately understood by the patient.
In this manner, the patient can enjoy the samelevel of medical care and the implicit right of selfdetermination and other rights afforded patientswith sufficient fluency in Japanese.
The healthcare provider’s advocacy forpatients without sufficient fluency in Japaneseis intended to provide patients with the best
medical care and benefit, by making the bestuse of all the healthcare provider’s knowledge
and skills. The author argues that advocacy forpatients without sufficient fluency in Japanese
should not be committed to healthcare providers
only; the healthcare interpreters as well should
be advocates. Ishikawa (2010) mentions that
all medical staff in contact with a patient are
implicitly regarded as advocates for the patient,so long as they respect and pay attention to
the patient and the patient’s needs. As well,
the physicians and the nurses should tackle thepatient’s health problems in cooperation withother professionals, to decide what is in the best

Keiko HATTORI

interests of the patient.
Although accu rate i nter pret ation andmaintaining a neutral position are important
for the healthcare interpreters as a matter ofcourse, healthcare interpreters are also required
to consider patients’ needs and protect patients’rights and dignity in the medical setting. In
this sense, healthcare interpreters are implicitly
regarded as advocates. Unlike the healthcare
providers’ advocacy, however, the healthcareinterpreters’ advocacy is to fill the cultural gap
between healthcare providers and patientslack ing suff icient f luency in Japanese byeliminating patients’ language barriers andproviding information about patients’ cultural
backgrounds to healthcare providers. The author
contends that healthcare interpreters should
be advocates for such patients by siding withthe patient and protecting a patient from any
reduction, avoidance, or suppression of any ofa patient’s full array of rights in the context ofJapanese society. Although the manner of acting
as an advocate may differ, healthcare providers
and healthcare inter preters are required tocooperate for the same purpose, that is, for thebest interest of the individual patient in their care.

6. Conclusions
Healthcare providers and healthcare interpreters
approach the advocacy for patients without
suff icient f luency in Japanese in different
ways. I n re spe ct i ng pat ie nt s’ i nt e nt ion s,
supporting patients’ right to self-determination,and protecting the patients’ rights generally,
healthcare providers should conduct advocacy,with a focus on the best benefit to the individual
patient. In particular, medical social workers
engage in advocacy to protect the patient fromanyone who may want to reduce, avoid, suppress,
or actively violate the patient’s rights. Healthcareinterpreters, for their part, fill the cultural gap
between healthcare providers and patients andconduct advocacy, when required. Further,healthcare interpreters can raise concern andprotect a patient from a healthcare provider, forexample, when recognizing the patient’s rights as
being reduced, avoided, suppressed, or actively
violated that may lead to compromised medicalcare. However, active advocacy by healthcareinterpreters has not yet been officially permitted35

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

in Japan. The reasons for this are the following:
the healthcare interpreter has not been officiallycertified and a considerable number of untrainedinterpreters are currently working in various
medical settings; the scope of the advocacy
conduct by the healthcare interpreter is currently
not clearly defined in the Japanese standardsof conduct for healthcare interpreters; and thehealthcare providers do not recognize what thehealthcare interpreter’s advocacy for the patiententails.
For pat ie nt a dvoca cy, t he healt hca reinterpreters need sufficient knowledge, skills, andexperience as professionals in their field. In lightof the current circumstances of the healthcareinterpreters, the author concludes that it may bepremature for the healthcare interpreters to betasked as patient advocates for patients. Most
importantly, we need to establish an official
qualification system for creating professional
healthcare interpreters and improve the training
systems for increasing the professional skills of
healthcare interpreters. Training is necessary,
not only for the healthcare interpreters, but also
for healthcare providers. Healthcare providers
are also required to understand the roles of thehealthcare interpreter, learn how to use thehealthcare interpreter in the medical settings, andexplore the challenges of advocacy of patients.
It is an urgent challenge for all professionals
treating patients without sufficient f luency inJapanese, and it is incumbent on all parties todiscuss and cooperate, to recognize each other’s
respective roles relating to advocacy for suchpatients. We will then need a further discussion
on t he role of advocacy, to be sha red byhealthcare providers and healthcare interpreters,
specifically concerning the boundaries of therole between the two parties and the respective
manner of advocacy for patients.

[3]

[4]

[5]

[6]

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[8]

[9]

[10]

[11]
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York, Addison Wesley Longman Inc, 1998.
37

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

RESEARCH REPORT

Masaoka Shiki’s Last Days and His Creations:
Notes on a Poet Who Suffered from Tuberculosis andSpinal Caries
Ren INO
Waseda University
Email: ino_ren@yahoo.co.jp

Abstract
Once, tuberculosis was said to be a disease that made us acknowledge death, as cancer might today.
Masaoka Shiki (1867-1902), a pseudonym for Masaoka Tsunenori, died of tuberculosis at 35, withcomplications from spinal caries. One of the most famous and important poets in modern Japanese
literature, Shiki expressed, through his last poems and thoughts, the poignancy and challenges of his
debilitated state, offering us a rare glimpse into a highly active and poetic mind at the edge of death,still able to find beauty, even within severe restrictions of illness. The continual and thoughtful care hereceived from family and friends offers us insight and chances for reflection on how best to support adying person.
As literary historian Reginald Horace Blyth wrote of Shiki, “By the end of his short life, he hadfound some humanity, but no religion, no pantheism, or mysticism, or Zen.” This article asserts that
Shiki’s self-discovery of a sense of ‘humanity’ is deeply related to the poet’s epiphanies of objective
self-awareness, satori [enlightenment], and kaigyaku [humor], all of which represent fundamental
qualities of his writing, especially his later writing. This article focuses on the philosophical concepts of
Shiki’s thinking, but also serves as a brief introduction to the life and literary work of the artist, who is
not so well known outside of Japan.
Keywords: thanatology, Masaoka Shiki, haiku, tanka, satori, kaigyaku, objective self-awareness,
pulmonary tuberculosis, spinal caries, end-of-life care

PrefaceOnce, tuberculosis was said to be a disease
that made us realize and acknowledge death,as cancer might today. In her ground-breaking
book, Illness as Metaphor, philosopher Susan
Sontag wrote the following about tuberculosis as
metaphor:Two diseases have been spectacularly, andsimilarly, encumbered by the trappings ofmetaphor: tuberculosis and cancer. (Sontag
1983: 7)
TB [tuberculosis] is thought to be relatively
38

painless. …. TB is thought to provide aneasy death, while cancer is the spectacularly
wretched one. For over a hundred years TB
remained the preferred way of giving deatha meaning - an edifying, refined disease.
(Sontag 1983: 20)
The Romantics moralized death in a new
way: with the TB death, which dissolved
the gross body, etherealized the personality,
expanded consciousness. It was equallypossible, th rough fantasies about TB,
to aestheticize death. (Sontag 1983: 24)(Omission by research author)
Sontag’s literar y character izations ofMasaoka Shiki’s Last Days and His Creations: Notes on a Poet Who Suffered from Tuberculosis and Spinal Caries ﻿

tuberculosis differ starkly from those expressedby Shiki, who suffered both from tuberculosis(TB) and, near the end of his life, spinal caries. In
fact, Shiki found the experiences of his illnesses
much less romantic, ref ined, and ethereal.
Ironically, writer and philosopher Tokutomi Roka
(1868-1927) published a novel titled Hototogisu[The Cuckoo] which has the same meaning as
Shiki’s pen name. The Cuckoo was released
in serial form, from 1898-1899, as Shiki begansuffering more acutely from TB, shortly after,
around 1900 [Meiji 33], and was hugely popularthroughout Japan and abroad, later published in
multiple translations. The novel depicts the deathof its heroine, Namiko, by TB, in a romanticized
way consistent with Sontag’s description. In hislast poems and other expressions, Shiki presents
a prosaic and unromantic experience with TB,
one that shows how he suffered, but was able tocome to terms with his illness, while at the sametime use the experience as a catalyst for some of
his finest writing.
Despite his serious condition, which left him
largely bedridden during the last six years of his
life, Shiki was still a prolific writer who managed
to leave a tremendous amount of quality workover a short lifetime. Shiki is one of the most
famous and important Japanese poets in modern
times. In his book A History of Haiku, Reginald
Horace Blyth, a specialist in Zen and haiku,
describes Shiki in the following manner:
Shiki, 1867-1902, is considered to be therestorer of haiku, which had been falling
off since the time of Buson. Basho walked
his Way of Haiku; Buson his Way of Art;
Issa, though he did not speak of it, his Way
of Humanity. What had Shiki? He had no
Way of any kind, unless perhaps a Way of
Beauty, like Keats, but ill-health and beauty
do not go well together, and by the end of his
short life he had got some humanity, but noreligion, no pantheism, or mysticism, or Zen.
(Blyth 1964: 21)
Shiki’s “humanity”, which Blyth mentions,is related to objective self-awareness, ‘satori’[enlightenment] (or at least his own form ofit), and ‘kaigyaku’ [humor]. Japanese historian
Donald Keene also describes Shiki’s senseof humanity, in relation to the poet’s cultural

Ren INObackground (see, Keene 1998: 36, or Chapter 2 ofthis article).
This ar ticle considers the concepts ofobjective self-awareness, satori, and kaigyaku,
concluding with ref lections about whether
Shiki benefited or was comforted by any ofhis personal epiphanies, as expressed in his
writing. Providing some biographical context
will help us place these concepts. First, he was areformer of tanka and haiku. Shiki succeeded incomposing literary works in modern colloquial
Japanese, rather than using highly formalized
Japanese. Shiki also lived a life that expresses
an additional bioethical meaning. That is, Shiki
was a real-life example of end-of-life care, where
no alternative was possible. He became infectedwith pulmonary tuberculosis at the age of 21, andlater contracted spinal caries at the age of 28. He
became largely bedridden for the final six yearsof his life, requiring the continual care of doctors,
his younger sister Ritsu, and friends.
Nevertheless, Shiki continued to create art
until the day he died at age 35. His body of work,
overwhelming, both in quantity and quality,
offers many entry points for explication anddiscussion, to learn about his life and art. We
can frame some of these entry points as questions
with brief references to their relevance to medical
ethics:1. What did Shiki think about his own deathand that of others? Consider i ng t h isquestion teaches us about coming to termswith death.
2. How did he resist the urge to commit
suicide, which had haunted him many times?
Considering this question leads us to think
about related topics, such as euthanasia,
dignity in death, assisted suicide, and endof-life care.
3. How did his younger sister Ritsu support
him through his difficulties? This question
teaches us about terminal home care andpain control in Tokyo, over 115 years ago(see, Document: Morphine Administration
Record).
Sh i k i wa s t he pat r ia rch a nd t he soleearner of the house. It was both his pride andresponsibility, and he always suffered fromhis inability, or lack of power (social pain) to
do more. Ritsu had to turn her heart into ademon’s, in order to replace his bandages, as he39

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

experienced continual and severe pain, as well
as regularly clean his bedding and bedpan. The
value of Ritsu’s efforts to comfort Shiki throughhis ailments as well as his mental anguish andloneliness cannot be overstated. At the same time,
we are invited to consider how such palliative
care and pain care can be solved in contemporarysociety.

1. Shiki and his impending death.
1.1 Objective self-awareness andtranscendent sensitivity
In early May of 1902, four months before his
death, Shiki began writing his final essay series,
Byosho Rokushaku [Six-Foot Sickbed], which
was serialized in the newspaper Nippon, forwhich he was a staff writer. The title of the series
is described in such a memorable form that it
has become, for many contemporary Japanese, afamiliar image of sickness and impending death:
A six-foot sickbed - this is my world. And
this sickbed six feet long is too big for me.
Sometimes I have only to stretch my arm a
bit to touch the tatami, but at other times I
can’t even relax by pushing my legs outside
the covers. In extreme cases, I am relaxed
but am tormented by such terrible pain thatI’m unable to move my body so much as aninch or even half an inch. Racked by pain,
anguish, shrieks, morphine, I search for away out, helplessly craving a little peace ona road that leads to death. All the same, aslong as I stay alive, I intend to say whatever
I feel like saying. Day in and day out, allI ever see are newspapers and magazines,
but often I am in such pain I cannot readthem. When I can, they make me angry
or irritated; but once in a while something
makes me so happy, I forget my pain.
Feeling like someone who has been sleeping
for six whole years and knows nothing of theoutside world, I write this preface by way of
introducing myself.
(Byosho Rokushaku, no. 1, June 5th, 1902
(Not the date of writing, but the newspaper
date. Same as below). Translated by Keene,
Keene 2013: 171-172)
40

The idea of his bed being ‘six-feet’[6 尺 ] hasa philosophical meaning of its own. In Japan,
both fusuma [sliding screen] and tatami-mats (alsofuton-mattresses) are made to be approximately
six feet in length. There is an old proverb thatsays, “Standing takes half a tatami, and sleeping
takes but one,” which means that human beings
do not require any more space than a tatami (about
180cm by 90 cm; 6 by 3 feet) to live.
Nevertheless, even this size was too wide
for Shiki, just four months before his death. Here,
Shiki claims that certainly the size of a tatami
is too wide for his sick body, but his spirit canspread out from there. This spirit can be restatedas imagination. For example, Shiki imagines
himself leaving his body and objectively looking
at himself on the six-foot sickbed. This is
not necessarily astral projection (out-of-bodyexperience), but rather the sign of an untetheredimagination.
The description of his sickbed informs us
about Shiki’s objectivism. Objectivism once hadjust been Shiki’s technique to write poetry, butlater, especially as his illness worsened to thepoint of being incurable, it became part of his
lifestyle. To describe this technique, he calledit ‘shasei.’ Beichman translates this word as “tosketch from life” (Beichman 1982: 54). Shiki
used the term shasei, which was inf luenced
by Nakamura Fusetsu (1). Certainly, this wayof thinking was part of the realism alreadyexpressed in modern Japanese literature, in
accord with other profound changes, such as
the felt national need for rapid industrialization(Bunmei-Kaika). However, it is worth noting that
Shiki tried to tackle ‘everything’ objectively,t h roug h h is ail ment s. Nat u r alism (r at her
natural scientism) in Western literature in the
19 th century also promoted realism in modern
Japanese literature. Shiki’s shasei is one such
expression.
1.2 Shiki and Chomin
Much of Shiki’s commentary on his literarycontemporary Nakae Chomin (1847-1901) may
best be understood as a literary rivalry of sorts,
near the end of their lives. Chomin died on the
13th of December, while Shiki died less than ayear later, September 19 th , 1902; both of themwere gravely ill. In characteristically stark andMasaoka Shiki’s Last Days and His Creations: Notes on a Poet Who Suffered from Tuberculosis and Spinal Caries ﻿realist language and image, Shiki thought that‘everything’ is included in the body itself. Shiki
criticized Chomin, a pseudonym for Nakae
Tokusuke, a journalist and statesman of the Meiji
era, a famous Enlightenment thinker whose lastwork Ichinen Yu-han [One Year and a Half ],chronicling his physical decline from esophageal
cancer, brought him unexpected acclaim andsome material success as well, while Shiki’s
writings about his last days experienced little
material success.
On the literary attack, Shiki criticized
Chomin’s lack of objective observation of his
own illness, even though Chomin was also ateacher of Shiki’s uncle, Kato Takusen, one of
the largest benefactors of Shiki. In a somewhat
reckless manner (See, Fukumoto 2017: 107),
Shiki criticized Chomin and his final days
which were described in Chomin’s best seller
essay Ichinen Yu-han. Shiki criticized Chomin
as “not beautiful” in his unpublished essay
Gyoga Manroku [Stray Notes While Lying On
My Back, including Morphine Diaries] andthree series published essays titled “Rest of Life”(1901). Both Shiki and Chomin are examples ofterminally ill patients who painfully chronicled
their condition and decline in their writing. In thefollowing illustration, in a soft but direct rebukeof Chomin’s view of dying and death, Shiki,
who had always used 居 士 ‘koji,’ the Japanesetraditional honorific title in referencing ‘Chomin’,omits all honorifics;[Written in the old style of Japanese] He[Chomin] still doesn’t know anything about
beauty [ 美 ], and in this point, his view isinferior to mine. If he understands reason[ 理 ], he will give up, but if he understands
beauty, he can enjoy the rest of his life. He
must enjoy it when he buys apricots andeats them with his wife [as Chomin says in
Ichinen Yu-han], but there is some reason
behind it. The scorching daytime heat isgone, and the white flowers of calabash [ 夕
顔 ] sway in the evening breeze; what kindof reason is there? (Gyoga Manroku, Oct.
15th, 1901)
Shiki’s chiding of Chomin, might derive
f rom Chomin’s u nexpected literar y fame,something that apparently surprised Chomin

Ren INOhimself.
However, this critique by Shiki was still
unpublished at the time; only the three series
essays, titled “Rest of Life”, were published before
Shiki’s death. Therefore, no one at the time knewof Shiki’s critique and ref lections in Gyoga
Manroku.
Though the second essay of Rest of Life
describes Shiki’s writing philosophy, the firstessay of the series gives us a better sense of histhoughts on how the dying Chomin failed to go
far enough, in coming to terms with the endingof his life. Shiki states his opinion, which he also
stated in Gyoga Manroku:
However, in the point that Chomin can’t
understand the pleasure beyond Gidayu[Japanese traditional play performed bydolls], it is inevitable that Chomin is asecular person. …… He was able to giveup on death from his theoretical reasoning
because he had an education [culture]. ……
If Chomin was able to live a little more,he may have been able to reach more than“giving up.” (“Rest of Life,” in: Shiki Zenshu[Shiki Complete Works], XII: 534-539,
especially 536. Omission by research author)In other words, Shiki criticized Chomin
for never surpassing the stage of “giving up”.
Chomin is unaware of beauty, and on this point,
his view is inferior to Shiki’s epiphanies about
dying and death. Shiki thinks that if Chomin
understands reason, he will give up; but if heunderstands beauty, he would be able to enjoy
his life, even if he is on his deathbed. Surely,
apricots and time spent with his wife can bringjoy, but there is reason behind them (thus no true
joy, thought Shiki). Shiki asks if reason is reallynecessary to feel the wind in the evening after
the whiteness of the sun. Shiki, as he faced death,
was able to find joy, without or beyond reason, in
experiencing nature, even in his debilitated state.
Shiki’s dissatisfaction lies in the fact that
Chomin went to see Gidayu and ate apricots
with his wife. Shiki, who was bedridden could
not go out, and he gave up on ever having awife and children. As the heir of the Masaoka
family name, this lack of both wife and children
apparently led to his feeling of disaffection.
He could eat apricots only with his disciples,41

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

mother, and sister. Concerning Shiki’s critique of
Chomin, writer Masamune Hakucho thinks that“there might have been an envy” (Hakucho 1983:
7; Chomin 2016: 321), but Tsurugaya also notesthat Shiki had long before accepted and cometo terms with not having a wife and children
and money as well. If we accept Tsurugaya’s
description, Shiki had already conceded theimpossibility of marriage, children, fame, andmoney. However, in contrast to Chomin, who,in Shiki’s mind, still clung to rationality andworldly considerations, Shiki broke through to ahigher, non-rational level, shown in his Byosho
Rokushaku and other last writings.
T h is h ig he r level of bei ng ca n be
characterized as objective self-awareness. By
being able to take a more objective view of his
painful life, Shiki was able to reach a level,
beyond rationality, where even a miserable life
could not inhibit laughter. Shiki reached the point
where he could simply love nature and sketch inwords and paintings, what seems mundane andunnoticed and bring the humble images of life
into high relief and visible in a new light.
Sh i k i’s deepest feeli ng as a ter m i nal
patient (2) is starkly depicted in his last essay,“The Mor ning of September 14 t h ”, and thepoet’s literary epiphany (3) occurs in the Jisei“Hechima Saite” (Both will be addressed further
on in this article).
1.3 Shiki’s viewpoint
Despite being bedridden and unable to move
without great pain and much discomfort, facedwith the fact of terminal illness, Shiki was able
to move to a new level of consciousness, beyond
reason and the worries of life. At this level,
Shiki sees, smells, feels, thinks, and writes (attimes with the help of a scribe or interpreter),transcending his situation, although at the sametime acutely aware that he feels himself as aphysical body. Consider the following tanka,
written a year before his death;kame ni sasu
fuji no hanabusa
mijikakereba
tatami no ue ni
todokazarikeri[the sprays of wisteria
42

arranged in the vaseare so shortthey don’t reachto the tatami]

瓶にさす藤の花ぶさみじかければたたみの上にとどかざりけり(Bokuju Itteki [A Drop of Ink], April 28th ,1901. Translated by Brower, Brower 1971:
403)
This is one of the most famous of his tanka,
widely known in Japan and part of the literarycanon taught at school. This tanka is also widely
considered to be one of the most difficult works
to understand and interpret. Generally, works
created with Shiki’s motto of “shasei objectivism”
are likely to raise questions. Most Japanese juniorhigh school students would probably think,‘Of course, the short sprays of flowers do notreach the tatami. So what?’ However, we must
remember Shiki’s words;
Even if I was lying on the sick-bed yearround, day and night and always enjoy
looking up even at a bonsai tree that isthree-shaku high [about 3 ft.], when I was alittle distressed by morphine, I want to laughat myself who was bothered a while ago.
(Byosho Rokushaku, no. 42, June 23rd, 1902.
Research author’s emphasis is added)
In other words, the true meaning of thiswork cannot be understood unless it is seen from
Shiki’s point of view. Many of Shiki’s importantworks cannot be understood without sharing the
viewpoint of Shiki, the bedridden patient.
T he sa me ca n be said for t he next
unpublished haiku, created at the same time
as Byosho Rokushaku, in the summer of 1902,
probably one of his final works.
ikita me wotsutsuki ni kuru ka
hae no koe[will it come to peck,at living my eyes
voice of fly]

活きた目をつつきに来るか蠅の声(Shiki Zenshu, vol. III: 460)

At that time, Shiki is thinking of himself as

Masaoka Shiki’s Last Days and His Creations: Notes on a Poet Who Suffered from Tuberculosis and Spinal Caries ﻿

if he were a soldier dying on the battlefield. He
expects that crows would come to peck the body,especially the eyes, even though he is not dead!
However, it is not the crow but the fly that comes.
Further, it is its sound, not its figure. Even so,
how sensitive he is to hear the fly’s voice! No,of course, Shiki does not hear the fly’s voice. No
one can hear the voice of an insect that cannot
speak. Shiki feels the change in the air in theroom and feels that change has reached his openeyes.
1.4 Awareness of death and the pen name‘Shiki’Shiki wrote the following tanka one year before
his death (dated May 4th, 1901):
ichihatsu nohana saki-idete
wagame ni wa
kotoshi bakari noharu yukan to su[the wall iris
opens its buds:
before my eyes
the last spring
begins to fade](Translated by Beichman, Beichmann 1982:
138)
Shiki despised May because his physicalcondition worsened every year, in the midst of
spring. Also, in this verse above, we can see that
he is terribly irritated and pained. But, in fact,
he was able to see the spring of the following
year. In this way, in his later years, Shiki always
understood that death was coming for him.
However, he struggled most when he reread theoldest kanshi [Chinese poetry] he wrote, when he
was in his twenties:
聞子規
一声弧月下
啼血不堪聞
半夜空欹枕
古郷万里雲

子規を聞く
一声、弧月の下血に啼きて聞くに堪えず
半夜空しく枕を欹つ
古郷、万里の雲[Listen to The Cry of Shiki [Little Cuckoo]
One cry under the lonely moon;
It coughs blood, I cannot bear to listen.
Halfway through the night, I strain my ears

Ren INOin vain, Ten thousand ri of clouds over myold home](Translated by Keene, Keene 2013: 24.
Originally, Shiki Zenshu VII: 16)
L ong before Sh i k i be ca me i l l, a s a nadolescent, he wrote of the cry of the little cuckooor ‘shiki.’ It seems that the poet unwittingly
intuited his future as a tuberculosis patient.
In poems of east Asia (China, Japan) shiki(hototogisu) is a symbol of a dying poet. The
pronunciation of this ‘shiki’ also leads to anotherword ‘shiki [ 死期 ],’ which means “time of death”
in Japanese.
Histor ian Donald Keene explai ns thesignificance of the bird metaphor:
This early mention of the hototogisu, a birdwhose cries suggest it is coughing blood, has
an ominous ring as the work of an elevenyear-old, seeming to foretell Shiki’s deathtwenty-four years later. “Shiki” was the
Sino-Japanese name for the hototogisu. The
image of the hototogisu would run throughShiki’s writings. (Keene 2013: 206, note 36).
In contrast, Keene quotes a haiku written by
Hozumi Eiki (1823-1904), who is almost forgotten
by contemporary Japanese.
chi wo nagasu
ame ya orihushi
hototogisu[Rain washes away
The blood: just at that moment
A nightingale sings.](Translated by Keene, Keene 1984)
The poem is based on Ueno, the battlefieldof the Meiji Restoration. In this haiku, thehototogisu (Keene translated it ‘nightingale’here) is just a bird which spits blood, without
philosophical import.
However, the connection between one of
Shiki’s earliest works and his pen name is stilla matter of theory. The decisive change in his
philosophical and literary outlook occurred as his
condition worsened from pulmonary tuberculosis
and, later, spinal caries. Shiki later recalls that
immediately after hearing the diagnosis, he feltthat time had stopped for about five seconds (See,43

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019a letter to Kyoshi, March 17th, 1896; Shiki Zenshu,
XIX: 16-19).

2. Preparedness to die
2.1 Shiki’s ambitions and despair
As early as 1895, Shiki wrote the following inthe same letter to Kyoshi, one of his most gifteddisciples in haiku, as well as a fraternal figure:
Many people in this world have great
ambitions, but none so great as I. Most
people are buried in the earth still embracing
their dreams, but no one will ever gobeneath holding fast to as many as I. …. No
matter how great my achievement in haiku,
it will be as zero compared to the infinity of
my dreams.
(Translated by Beichman, Beichman 1982:
60. Originally Shiki Zenshu XIX: 18)
Shiki was a very ambitious man. He wasa student at the Imperial University (Teikoku
Daigaku) in the 1890s. This was the first andonly university in Japan at that time, so theclasses had only a few dozen students, including
Shiki. They were expected to become senior
government officials or to serve as teachers at
educational institutions that were established one
after another on behalf of foreigners who were
hired at very high salaries.
Ts ub ouch i Shoyo, a n up p e r cla s sm a nof Shiki’s at the university and from whom
Shiki had learned English, was exceptionallywell-established in literature, and as a result,
Tsubouch i felt h i m self, along w it h ot her
graduates at the time, as someone who would be
responsible for the establishment of the Facultyof Literature at Waseda University, as well as
becoming a leader in spreading Western theater
to an increasingly modern and urban Japan.
By contrast, Shiki had quit university,
though almost everyone had encouraged him
to change his mind. Shiki was greatly ashamedof having betrayed his family and hometown
expectations. As a scholar from Matsuyama City,
formerly Matsuyama Han, a local area of the Edo
period, he defamed his family name, Masaoka(former samurai). This failure to complete his
degree is an early example Shiki facing and44

confronting limits.
However, it was his incurable disease that
became the fatal limit for him, as evidenced byhis last two published essays both named after
his literary and physical limitations, Bokuju Itteki[A Drop of Ink] and Byosho Rokushaku [Six-footSickbed].
So, as Beichman states (Beichman 1982:60), “[By] this time Shiki made his statement,
he seems to have adjusted to the limits of his
world. The title of the diary itself, with its
implication that his world was contained within
the boundaries of a six-foot sickbed, would
indicate as much, as does the title of the diaryhe had written the previous year, A Drop of Ink.
Both suggested that he had scaled down his
expectations to the point where they no longer
created needless frustrations.”
So, in his despair, it is likely that he would
have considered suicide. However, no matter
how hard he looked at his younger cousin,
Fujino Kohaku, who had committed suicide,or some acquaintances - the first one of which
was Shimizu Noritoo, who died at the age ofseventeen, Shiki’s university roommate for whom
he had served as a chief mourner on behalf ofShimizu’s father in distant Matsuyama - who diedwithout being able to commit suicide, Shiki could
not kill himself.
2.2 Suicidal impulse and acceptance ofsuffering
However, Shiki must have had no desire tocommit suicide, though he had thought of it. In afamous description dated October 13th, 1901, in
Gyoga Manroku, he writes with tears that he had
nearly succumbed to a suicidal urge, but he could
not die because of the suspected pain before
his own death; it wasn’t that he decided not todie, but rather felt he was unable to die. This
description is memorable:
The house had become silent. Now I wasalone. Lying on my left side, I stared at thewriting set before me. Four or five wornout brushes and a thermometer and on topof them, lying quite exposed, a blunt little
knife a couple of inches long and a twoinch eyeleteer. The suicidal feeling thatsometimes sweeps over me even when I

Masaoka Shiki’s Last Days and His Creations: Notes on a Poet Who Suffered from Tuberculosis and Spinal Caries ﻿

am not in such a state suddenly surged up.
The thought had already f lashed throughmy head while I was writing the telegram
message ….
But I could hardly kill myself with thatblunt little knife or the eyeleteer. I knew arazor was in the next room if I could only
get there. Once I had a razor, cutting mythroat would be no problem, but sad to say,
I can’t even crawl now. If no other way
existed, cutting my windpipe with the little
knife would not be impossible. Or I could
pierce a hole in my heart with the eyeleteer.
I could certainly kill myself in that way, but
I wondered if I would die immediately if I
drilled three or four holes.
I thought over every possibility, but totell the truth, fear won out, and in the end, I
couldn’t bring myself to do it. I wasn’t afraidof death, but of the pain. I thought that if I
found the pain of my sickness unbearable,
how much more horrible the pain would
be if I botched my suicide. But that was
not all. When I looked at the knife, I felt
something like a current of fear f lowing
from it and welling up inside me. (Translatedby Keene, Keene 1998: 370-371. Omission,
paragraphing and emphasis by researchauthor)At the end of his diary, Shiki drew picturesof the knife and the eyeleteer, and wrote four
Chinese letters 古白曰来 [Kohaku iwaku ‘kitare,’Kohaku calls to come]. The Voice of Kohaku
from hell tormented Shiki. Kohaku tried to killhimself with a pistol seven years ago, but hecould not die for days in a hopeless situation.
Also, in the next year, the last months of his life,
he often expressed his desire to die. Unable tocommit suicide, because he lacked the ability
to do so, Shiki, it seems, wanted some form ofassisted suicide. From June 19th to 22nd (newspaper
dates), 1902, Shiki wrote these consecutive essays(Byosho Rokushaku):
No. 38 (June 19th)[Written in the old style of Japanese (4)]Here is a patient. He is in so much pain
and weak to the point that he can hardly
move. His mind is confused and can’t readbooks or newspapers because his eyes are

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crumbling. Even worse, writing a sentencewith a brush can never be done. So, there areneither nurses nor visitors to talk to. How
can he spend his day? How can he spend hisday?
No. 39 (June 20th)
When I took to my sickbed, as long as I
could still move, I didn’t find my sickness
too hard to endure, and I lay there quite
serenely. But when, as of late, I have become
unable even to stir, I am prey to mental
anguish, and almost every day, I feel pain
enough to drive me out of my mind.
I have tried my utmost to bear it,
but I have reached the point where I canendure no more, and my patience is at last
exhausted. A person who gets into such astate is no use for anything. Screams. Howls.
More screams, more howling. I have noway to describe the pain, the agony. I think
it would be easier if I turned into a real
lunatic, but I can’t even do that. If I could
only die, that would be more welcome thananything else. But I cannot die and no one
will kill me.
The suffering of the day is finallyreduced at night, and when I am slightly
drowsy, the pain of the day ends and thepain of the next day wakes up already. Thereis no time when it hurts as much as when
waking up. Isn’t there anyone to save mefrom this pain? Isn’t there anyone to save mefrom this pain? (Paragraphing and emphasis
by research author. See, Keene 1998: 368)
So, who can help Shiki? How about religious
grace? Apparently not, as the following diary
entry describes:
No. 40 (June 21st)“How can I spend my day?” “Isn’t there
anyone to save me from this pain?” To get
here, religious people will say that I havearrived at a religious issue. But for me whodoes not believe in religion, religion isuseless. God’s helping hand cannot reachthose who do not believe in Christianity.
For those who don’t believe in Buddhism,
it is impossible to spend the day repeating
Buddhist prayers. ….
45

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019

In the extreme, even my breath was
dominated by the breaths of others and it
became very painful. It has become much
more difficult to harmonize with myself
and my surroundings. When morphine isworking well, this harmony is a little easier,but these days it no longer works. I fall into
this kind of boundary. ….
If a compassionate soul comes to my
bed and tells me something interesting, I
will be grateful that it will save me somepain. ....
The only thing I want to refuse isa person who sits face to face and says
not h i ng. (O m ission, pa rag raph i ng byresearch author)
Because Shiki is “educated according torationalist, Confucian principles” (Keene 1998:368), religion could not bring comfort to him.
Finally, he was also kept from speaking, as if
being unable to write was bad enough.
No. 41 (June 22nd)
Today the suffering was severe. ….
I was administered morphine twice.
(Omission by research author. But in fact, it
seems to be that, in the day like this, Shiki
can hardly think of anything)
In these consecutive entries, it is apparent
that Shiki was barely able to write no. 38 byhimself. After that, he had to rely on dictation.
And the pain was especially severe the day hewrote no. 41.
2.3 A letter from a religious person withlung disease
At that time, a letter was delivered to Shiki who
suffered such a disease. He wrote in the same
essay:
No. 42 (June 23rd)
When I got up this morning, I received aletter. It is from an anonymous sender in
Hongo [Tokyo] and he is a stranger to me.
This letter is roughly as follows:
S i n c e r e l y, I r e a d y o u r B y o s h oRokushaku and felt something, so I’ll give
you some advice.
46

First, rest assured that the HeavenKing or Nyorai are always with you.
Second, if you can’t believe in theformer, just be patient with your current
situation, progress of the situation, leave it
to pain, leave everything as it goes, leave
Heaven and Earth and let everything appear
and disappear to you because of the limit ofhuman power.
Third, if you can do neither, cry in
confusion, only to die.
Once I was on the verge of death, andinevitably bothered and confused about
my body, I could get a mental rest by that
second way. This was my saving grace, so I
can’t say that it will help relieve your pain
or not. I beg you to try to think if your painis a bit softer.
This kind, clear, and plain letter hascaught my heart and my thoughts are almost
completely covered. ….
However, in me, the mental illness
is physiologically generated, and when I
am in pain, I can’t do anything. Even if
it is physiologically worrying, there is noother way than to leave it to “the current
progress.” There is no other way thancrying, feeling annoyed, and dying at last.
….
But as long as it is a physical pain,
when it is mild, I can’t give up but say that
there is no means of comfort. When it comesto advanced pain, I can’t just be comfortable,
but I feel like I can’t give up. Probably, I canstill not give up. ….
Even if I was lying on the sick-bed
year round, day and night and always enjoy
looking up even at a bonsai tree that isthree-shaku [3 ft.] high, when I was a little
distressed by morphine, I want to laugh at
myself who was bothered a while ago.
If I knew that I was the same person
when I laughed, those who laugh at myannoyance would all be laughed at by me if
each changed their position and could not
escape. Having a hearty laugh. (Written on
June 21st (5) (Omission, paragraphing andemphasis by research author)
T he sender of t h is let ter is probably
Kiyozawa Manshi, a reformer of Jodo-Shinshu

Masaoka Shiki’s Last Days and His Creations: Notes on a Poet Who Suffered from Tuberculosis and Spinal Caries ﻿[Buddhism] during the Meiji era. Kiyozawa’s
disciple Akegarasu Haya studied and composed
haiku and tanka under Shiki at the same time.
In addition, Kiyozawa had shown his respect for
Shiki’s works for several years. Kiyozawa noted
Shiki’s huge appetite, which was mentioned in
Shiki’s later essays. Shiki’s gluttony was one
way to cope with his lung disease. One medical
scientist Fujimoto Shigefumi, President of Sendai
Aoba Gakuin Junior College, speculates that
Shiki ate more than 3000 or 4000 kilo calories aday (cf. Fujimura 2011: 56). The anonymous letter
was supposed to be sent to Shiki, to encourage
hi m. Of the th ree ways to be saved f rom
suffering, Kiyozawa recommends the second.
However, Shiki is most sympathetic with thethird suggestion, “Cry in confusion, only to die,”
It seems that Shiki could live only this way, as
Shiki’s own satori [enlightenment, epiphany].
2.4 Satori for Shiki himself
Before this letter, Kiyozawa was asked by anotherdisciple, Ando Shuichi, “What do you think
about the satori of Masaoka Shiki’s thinking?”(cf. Ando 1904) Kiyozawa praised Shiki’s view ofsatori. This actual conversation between a masterand a pupil was triggered by a famous essay of
Shiki, an excerpt of which follows:
Up to now, I have always misunderstood thesatori of Zen. I mistakenly supposed thatsatori was a way of dying in a tranquil state,
regardless of the circumstances, but satoriis actually how to live in a tranquil manner,
regardless of the circumstances.
(Byosho Rokushaku, no. 21, June 2 nd in1902. Translated by Keene, Keene 2013: 232,
note 27. Originally Shiki Zenshu XI: 261)
Although Shiki had little good to say about
religion per se, he did express a kind of affinity
for satori in Zen. However, this satori, in thesense Shiki describes it, is, as Blyth says (Blyth
1964: 21, and in the Preface of this article),different from religion, pantheism, mysticism,
and Zen; instead, it is related to ‘kaigyaku.’
2.5 Jisei [farewell/resignation haiku]
Shiki wrote three haiku as his jisei on the day

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before his death. The first of them is the most
relevant for this article.
hechima saite
tan no tsumarishi
hotoke kana[The sponge gourd has bloomed;
See the Buddha
Stuffed with phlegm](Translated by Keene, Keene 2013: 188)

糸瓜咲て痰のつまりし佛かな

During this time, near the end of life, Ritsu
and disciple Hekigoto both supported Shiki in
his writing. In later years, Hekigoto recalled that
Shiki was out of breath as he wrote three verses,
including this first one with his brush. The final
state of Shiki, which Hekigoto describes in his
Shiki no Kaiso [Reminiscence of Shiki], is very
touching. As many critics have explained, it isstrange that Shiki compares the dying self here
to a Buddha (in old Japanese grammar, ‘shi’ of‘tsumarishi’ is an auxiliary verb of the past tensein the first person). The Japanese word ‘hotoke’
can also stand for ‘corpse,’ but his intended
meaning is not necessarily religious because
religious figures or divinities such as the Buddha
or God do not struggle, suffer or die.
Here, Shiki is about to die. In Japanesecustom, it is said that water of the hechimasoothes the throat of a sick person, but it actually
does not work. It is too late. Like the old proverb‘yamai koumou [koukou] ni iru’ [When the
disease spreads too far, it is no longer curable].
However, even as he was dying, Shiki looked
at himself objectively, even portraying himself
humorously. His sense of humor, kaigyaku, iswhat Shiki had consistently, as he could not help
but laugh at his tormented self (See, No. 42 of
Byosho Rokushaku, and above, 2.2 of this article).
Shiki eventually died, but he did so by retaining
his essential character.

Conclusion: Pain, Care, and Thanks
As he was the patriarch and sole earner of his
own house, Shiki was also the patriarch of theliterary association with his name Hototogisu. As
well, he was surrounded by many disciples andshared a fraternal bond with many of them.
However, during the years leading up to47

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019his death, Natsume Soseki, the most famous
writer in modern Japanese literature, and Shiki’s
lifelong friend, was in London, so Shiki could
not meet with him. Shiki wrote several lettersand confessed his deep sadness and despair,which he could tell only to his friend. Shiki
himself was aware of his impending death, andthe surroundings he starkly describes express
this awareness. His last days and last creations,
including three jisei haiku, were composed when
he was no longer able to speak well enough, so
people who cared for him could not know his lastwords. However, he gave them a lot, and they
returned the favor; Shiki must have been gratefulfor all the things that he was given.
Swiss-American psychiatrist Elizabeth
Kübler-Ross mentions a poem as an exampleof the last stage in her five-stage model ofencountering dying: ‘acceptance’ (cf. KüblerRoss 1969). The poem, translated from Bengali
to English by the poet himself, was written by
Rabindranath Tagore (1861-1941), winner of theNobel Prize for Literature, in 1913, and the firstsuch winner who hailed from Asia:
I have got my leave. Bid me farewell, mybrothers! I bow to you all and take mydeparture.
Here I give back the keys of my door and I give up all claims to my house. I only
ask for last kind words from you.
We were neighbours for long, but I
received more than I could give. Now the
day has dawned and the lamp that lit mydark corner is out. A summons has come and
I am ready for my journey. (Gitanjali, 93)
Tagore’s poem aptly expresses how Shiki
must have felt: acceptance of his impending
death.
Let us conclude this article with Shiki’s
own words. The jisei [farewell] haiku has alreadybeen mentioned, and the following are some lines
from his last essay, “The Morning of September
14th.” It was written five days before his deathand published in “Hototogisu” magazine, dated
September 20 th , 1902, a day after his death,with a note stating that “Shiki died; he made a
distant trip at 1 am.” In prose, Shiki adds his own
description:48

My condition suddenly worsened from 4,
5 days ago; although from before my legs
that had been hardly able to move, suddenly
swollen like water, I can’t move at all. ….
Unt il now, I have su f fe red f rom
various pains, but this is the first time I haveexperienced such pains. Therefore, for the
past few days, my hospital room has becomea kind of disturbing atmosphere due to mysuffering, the hustle and bustle of my houseand my friends coming to visit.
…. When I woke up this morning,
my feet remained the same as the previous
day, but my mind was very calm, probably
because I had a good night’s sleep only lastnight different from usual. Although myface was slightly southward, I was unable
to move it at all, but I looked quietly outside
the glass shoji [window]. [Looking to cloudy
silent sky, yoshizu [reed screen], about
10 fruits and a few f lowers of hechima,ominaeshi [golden lace], keitou [cockscomb],shukaidou [begonia] ......] Since I got sick,I have never seen this garden as quietly
with a peaceful heart as this morning.
[Talking with Kyoshi, hearing a voice ofan about 6-year old child living in a house
opposite south, reading a textbook, and anatto seller comes to Shiki’s house in theback of the alley, so asked to buy because ofcontributing sales; actually he didn’t want it
much....].
.... When I talk with Kyoshi about
the morning at Suma [where Kyoshi went
to visit when Shiki’s condition worsened
enough to die, in 1895], the hechima leaves
fluctuate one by one as if they had fallen,even by dew. Every time, the coolness ofautumn seemed to permeate my skin, and it
was a good feeling. It seemed strange that
I felt so painful that I didn’t feel sick for awhile, so I wanted to write it in a sentence
and spell it with my mouth. I asked Kyoshi
to write it down. (Cf. Shiki Zenshu XII: 570572. Omission, paragraphing and emphasis
by research author)
It may not have been romantic, but thissaved moment before his final moments wascharacterized by a tranquility after his long
journey of suffering from tuberculosis and spinal

Masaoka Shiki’s Last Days and His Creations: Notes on a Poet Who Suffered from Tuberculosis and Spinal Caries ﻿

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caries. We know that Shiki’s death was possible
only with his essential character, and with care ofthose around him.
Document
Mor phine Administration Record (by Shiki
himself, in Gyoga Manroku, II, cf. Shiki Zenshu
XXI: 489-493).
Period: 1. From March 10th to 12th, 1902.
Period: 2.-3. From June 20th to July 29th, 1902.
figure 1

1. March, 1902
10th 8:40 am

11th 1:30 pm, past 12th Noon
11 pm

Shiki’s autograph of three haiku as his jisei, written on
18th September, 1902, just a half day before his death(from right to left, 4th-7th lines: 糸瓜咲て [hechima saite]
痰の [tan no] つまりし [tsumarishi] 佛可奈 [hotoke kana])

2. June, 1902
20th Noon, 9 pm

21st 5:45 pm

22nd 9:05 am

23 2:15 am

24 9 am, 6:20 pm

25th 8:35 pm

26th 8 am

27th 6 am, 10 pm,
37.8 C (bodytemperature)

28th 10:20 am, 8:25
pm

29th 9 am

30th 9 am, 37.2 Crdth

3. July, 1902
1st 8:30 am, 5:25 pm 2 n d 8:3 0 am, 7:15 3rd 7 am, 3:30 pm
pm
4th past 4 am, 4 pm

5th past 7 am, 7 pm

7th 8:30 am,
pm (lack of time)

8 t h 7:3 0 a m, 5:3 0 9th 9:15 ampm

10th not drunk

11 th t wice (lack of 12th 8 am, 4:40 pm
times)

6th around 8 am, ar.
7 pm

13th 4 am, past 3 pm 14th 2 am, 3 pm

15th 2 am, 1:30 pm,
9:30 pm*

16th 0:35 pm

17th 1 am, 0:30 pm,
8:30 pm*

18 th 9:30 am, 5:30
pm

19th 9 am

20th not drunk

21st 10 am

22 9:30 am

23 10 pm

29th 10:35 amndrd(From 24th to 28th, no record)* He drank three times despite the doctor’s limitof twice a day. Perhaps he and others were guiltyof it, but judging from current standards, we canappreciate that he increased the medication rather
than to suffer from unbearable pain.

Endnotes
1 Fusetsu was Shiki’s very important friend, who
had learned from Asai Chu, one of the leading
Western-style painters of the Meiji era at the
government-run Kobu Bijutsu Gakko (Technical
School of Art, established in 1876). Also, a famous
writer and doctor Mori Ogai praised Fusetsu, and
it is known that Mori requested Fusetsu write thecalligraphy inscribed on his own (Ogai’s) grave.
2 Even Tsur ugaya, an excellent researcher andtranslator of Chomin, admits that “Certainly,
the depth of the shadow of death in Shiki’s final
essays Gyoga Manroku, Bokuju Itteki and Byosho
Rokushaku elevate them above Chomin’s Ichinen
Yu-han…” (Tsurugaya’s explanation; see, Chomin
1995: 317-323, especially 322-323). In addition,
Tsu r ugaya praises Shi k i’s f i nal essay “T heMorning of September 14th” as it evokes feelingsof “clear tranquility and peace” (his explanation;
Chomin 1995: 322-323).
3 In describing these three haiku of the jisei, afamous haiku poet Yamamoto Kenkichi (see,Yamamoto 1962: 36) praised them, stating that“[they are] complete final words and also singing,”“It can be said that his life as haiku poet is to getthese three phrases.” These are generally highly
acclaimed as Shiki’s masterpieces. I agree withthese opinions. Ironically, the one exception was
Shiki’s gifted disciple, Kyoshi, who gave the lastworks of Shiki a low rating. Kyoshi wrote, “I
don’t think these haiku of the jisei are as good49

Journal of Philosophy and Ethics in Health Care and Medicine, No. 13, December 2019as Shiki’s [other] works, and I think that they are
not particularly good enough to represent Shiki’s
objective attitude towards life” (Naito et al. 1916:
42. Emphasis by research author).
4 Like many other languages, Japanese has twostyles of writing: the old style or written language
was used mainly until about 1900s (Meiji 30s),
some years after the death of Shiki. Shiki is the
person who introduced a new style of Japanesew r it i ng wh ich expresses spoke n la ng u age.
Because Shiki, in his last years, could not use thepen (Japanese brush) well enough, he had others(mostly his sister Ritsu, or disciples (Kyoshi,
Hekigoto, and others) write down his spoken
words. With his rich knowledge of Chinese and oldJapanese, Shiki became one of the best writers of
his era. His supervising manager, Kuga Katsunan,
President of the Newspaper Nippon; his uncle Kato
Takusen; his elder friend, Mori Ogai, are also suchpeople, deserving of the title of experts.
5 Noted by Shiki himself. This date of writing isdifferent from the newspaper date and is a message
to the sender of that letter, Kiyozawa, although
Shiki pretends not to know in the text.

[7]
[8]

[9]

[10]

[11]

[12]

References
1. Written in Japanese:
[1]

[2]

[3]

[4]

[5]

[6]

50

MASAOK A, Shiki 1975-1978: Shiki Zenshu[Shiki Complete Works], 22+3 volumes, Kodansha
Publishers, Tokyo.
MASAOKA, Shiki 2004: Shiki Hyakku [Shiki 100
Haiku], edited by TSUBOUCHI, Toshinori and
KONISHI, Akio, Sofu-sha Shuppan Publishers,
Matsuyama.
ANDO, Shuichi (ed.) 1904: Kiyozawa Sensei
Sinkou Zadan [Religious Discussion by Master
Kiyoza wa], Tok yo; ht t p:// k i nd ai.nd l.go.jp/
info:ndljp/pid/820377/1
FUJIMURA, Shigefumi 2011: ““Meiji 20 nendai
no kekkaku” ni tsuite [About ‘tuberculosis in
Meiji 20s’],” in: OHMOTO et al. (ed.), Shousetsu
no Shohousen [Prescription for Novel], Tokyo, pp.
55-59.
FU KU MOTO, Ichiro 2017: Masaoka Shik i.
Jinsei no Kotoba [Masaoka Shiki. Words of Life],
Iwanami Shoten Publishers.
I NO, Re n 2016: “ Ma sa koa Sh i k i n i oke r u
shiseikan [Masaoka Shiki’s view of life anddeath],” in: INO, Seimei no Rinri. Nyumon-hen

[13]

[14]

[Bioethics. Introduction], Sankeisha Publishers,
Nagoya, pp. 86-122.
KAWAHIGASHI, Hekigoto 1944: Shiki no Kaiso[Reminiscence of Shiki], Tokyo.
KOIZUMI, Hiroaki 2005: “Yamai no ningengaku
no ichi-kousatsu [A Study of the Anthropology
of Disea se],” i n: Bu nk yo G ak uin D aigak u
Gaikokugo-Gakubu Kiyo [Bulletin of Faculty ofForeign Languages, Bunkyo Gakuin University],
vol. 5, pp. 355-368.
KUDO, Mayumi 1996: Masaoka Shiki no kyoikuningengakuteki-kenkyu. Shaseikan-shiseikan noseisei-katei no bunseki kara [An educationalanthropological study of Masaoka Shiki. From
Analysis of the process of generation of a viewof sketch, a view of life] (Dissertation), KazamaShobo Publishers, Tokyo.
MASAMUNE, Hakucho 1983: “About Masaoka
Shiki” (1927/1928), in: Masamune Hakucho
Zenshu [Complete Works], Fukutake Shoten
Publishers, vol. 20, pp. 146-149.
MIYAMORI, Asataro 1932: An Anthology ofHaiku Ancient and Modern, t ranslated andannotated by Miyamori, Connecticut.
NAKAE, Chomin 1901/1995: Ichinen Yu-han [OneYear and a Half ], Iwanami Shoten Publishers,
noted by IDA, Shin-ya, Tokyo; translated intomodern Japanese and noted by TSURUGAYA,
Shin-ichi, Kobunsha Publishers, Tokyo 2016.
NAITO, Meisetsu, TAKAHAMA, Kyoshi 1916:
Shiki Kushu Kougi [Lectures for Shiki’s Works ofHaiku], Yuzendo Publishers, Tokyo.
YAMAMOTO, Kenkichi 1962: Gendai Haiku[Modern Haiku], new edition, Kadokawa Shoten
Publishers, Tokyo.

2. Written in English:[15] B e i c h m a n , J a n i n e 19 8 2: M a s a o k a S h i k i ,University of Library and Information Science,
Twayne Publishers, Boston.
[16] Blyth, Reginald Horace 1964: A History of Haiku,
two volumes, vol. 2, From Issa up to Present,
Hokuseido Press, Tokyo.
[17] Br owe r, R . H. 1971: “ M a s a ok a Sh i k i a nd
Tanka Reform,” in: Shively (ed.), Tradition andModernization in Japanese Culture, Princeton, pp.
379-418.
[18] Keene, Donald 1971: “Shiki and Takuboku,”
i n: Keene (ed.), Land scape and Por t raits:
Appreciations of Japanese Culture, Tokyo, pp.
157-170.

Masaoka Shiki’s Last Days and His Creations: Notes on a Poet Who Suffered from Tuberculosis and Spinal Caries ﻿

Ren INO[19] Keene, Donald 1984: Dawn to the West, II, NewYork.
[20] Keene, Donald 1998: Modern Japanese Diaries.
The Japanese at Home and Abroad as Revealed
Through Their Diaries, Columbia University
Press, New York.
[21] Keene, Donald 2013: The Winter Sun Shines In: A
Life of Masaoka Shiki, Columbia University Press,
New York.
[22] Kübler-Ross, Elisabeth 1969: On Death andDying, Macmillan.
[23] Sontag, Susan 1983: Illness as Metaphor, Penguin
Books (1977/1978).
[24] Tagore, Rabindranath 1913: Gitanjali (SongOfferings), a collection of prose translations madeby the author from the original Bengali, with an
introduction by W. B. Yeats, Macmillan, London.

51