End-of-life Care: Japan and the WorldInternational Comparison Studyon
Death and Dying in Place
International Comparative Study on Ideal Terminal Care and Death
International Comparative Study on Terminal Care System

Abbreviated Version

March 2011
International Longevity Center - Japan1

International Comparison Study on Death and Dying in Place
International Longevity Center (Japan)
The International Longevity Center was founded in 1990 to perform studies and surveys
from an international and interdisciplinary perspective on the various problems accompanying
an aging society with fewer children and provide instruction and policy proposals across theglobe. Since then, sister centers have sprung up in 12 countries around the world that
continue to actively work towards a dynamic life for the elderly.
Japan is moving at an accelerated pace to an elderly society with fewer children and by
2050 more than 35 percent of the population will be ranked as elderly. In this context, it will
become increasingly essential that: 1) elderly people should be able to continue an
independent life as much as possible, 2) they should be able to lead a full life even if someform of assistance is needed, 3) the QOL for elderly persons in the final stages of life basedon their own personal decision should be maintained, and 4) an environment should beformed that caregivers approve of.
We wanted to add our own basic evaluation while reviewing the status taken for granted
in Japan up till now, by employing the method of international comparison as a starting point
for clarifying the proper stance to take on end-of-life care as well as the elderly person‟s rightto make his own decisions and QOL. To do this we formed an investigation and researchcommittee to make an “International Comparison Study on Death and Dying in Place” by wayof research work both at home and abroad in a wide range of specialist fields including
medical care, welfare and life ethics. We carried out an “International Comparative Study on
Ideal Terminal Care and Death” and “International Comparative Study on Terminal Care
System” focusing on 8 countries including Japan as well as separate study efforts by each of
the research members.
The aim of this investigation and research was to clarify differences in end-of-life care
between Japan and overseas countries as well as special features of such care in Japan andto offer suggestions on overall policy. We were able to provide ethical issues involving
end-of-life care and future directions to work towards, and offer important indicators on areas
to work towards on issues on the culture, systems and policy positions of Japan as seen fromabroad.
This booklet provides a summary of the “International Comparison Study on Death andDying in place” report of 2010, and International Longevity Center is responsible for the dialog
and text of this booklet. Please consult the report for more information.
International Longevity Center (Japan)
8th fl, 33 Mori-Building,3-8-21 Toranomon, Minato-ku, Tokyo 105-8446, Japan
Phone: 81-3-5470-6767 / Fax.: 81-3-5470-6768
E-mail: ilcjapan@mba.sphere.ne.jp / URL: http://www.ilcjapan.org© International Longevity Center (Japan)2Research project:
The International Comparison Study on Death and Dying in Place
Steering Committee<Chief Examiner>

Kazuo Hasegawa, M.D., Ph.D.
Professor Emeritus, St. Marianna University, School of Medicine
Honorable President, Tokyo Research and Training Center for Dementia Care<Committee member>
Tetsuo Fukawa, Ph.D.
Former director, National Institute of Population and Social Security Research
Fumio Isobe
Representative Director of the Institution for Future Welfare
Rihito Kimura, Ph.D.
President, Keisen University
Masako Minooka, M.D.
Research Fellow, Dept. of Biomedical Ethics, The University of Tokyo Graduate School of
Medicine
Mari Tsuruwaka, Ph.D.
Associate Professor, St. Luke‟s College of Nursing
Yukimi Uchide, Ph.D.
General Director, Social Welfare Foundation Tenjin-kai

Research Team
for"International Comparative Study on Ideal Terminal Care and Death"
Taeko Nakashima, Ph.D.
Senior Researcher, Institute for Health Economics and Policy

Kanao Tsuji, M.D.
President, Life Care System

Daisuke Watanabe, Ph.D.
Assistant Research Fellow, Center for Asian and Pacific Studies, Seikei University

3

CONTENTS“International Comparison Study on Death and Dying in Place” Summary…5

I. General Remarks
1. Worldwide issues and outlook on dementia end-of-life care (excerpt)…6
Kazuo Hasegawa
2. Round table talk: home nursing, medical and end-of-life care (1 section）…8
Kazuo Hasegawa, Masako Akiyama, Yukimi Uchide, Fumio Yamazaki

3. Ethical issues and perspective of end-of-life care for the person with dementia (excerpt)…10
Masako Minooka

II. “International Comparative Study on Terminal Care System”“International Comparative Study on Ideal Terminal Care and Death”
Report and Analysis
1. Viewpoints of international studies (excerpt)…14

Kanao Tsuji

2. International comparative study on terminal care system (1 section)…16
Taeko Nakashima
3. International Comparative Study on Ideal Terminal Care and Death (1 section）…19
Kanao Tsuji, Daisuke Watanabe, Taeko Nakashima
4. International comparative analysis in awareness on ideal terminal care and death(1 section)…35

Daisuke Watanabe

III. Actual status in overseas countries, analysis and policy proposals
1. Issues for end-of-life care (terminal care) of elderly dementia subjects in Japan (excerpt)－Learning from challenges faced in Italy and Australia－…37

Yukimi Uchide

2. Issues and current status of welfare for the elderly and home and institutional careservices in Taiwan (excerpt)…41

Mari Tsuruwaka

3. Healthcare and long-term care expenditures at terminal stage (excerpt)…44
Tetsuo Fukawa
4. Outlook and administrative issues on end-of-life care (excerpt)…46

4

Fumio Isobe

“International Comparison Study on Death and Dying in Place” Summary

・If a 24 hour care system were available then end of life care in home ispossible(round table talk)・ “Cure sometimes, Comfort always”(Minooka)
・[satisfaction with end-of-life care] = [satisfaction of person with dementia] + [family
satisfaction] + [satisfaction of nursing/caregiver staff] (Minooka)
・Introduce PEG only after it is explained and understood (round table)
・To spent peaceful final days as one wish, the prevalence of Advance Directive andthe movement “let’s think about our own end-of-life care” are important(Minooka)・Health care costs for the 1 year prior to death decrease as the age rises. The future
drop in death rates in advanced countries will occur due to a delay in disease
outbreaks (Fukawa)
・Education is needed to promote the fact that as one becomes aware that life islimited and death is also a natural process, then one starts to want to get involvedin that end-of-life process (Uchide)

Policy Issues
・End-of-life care at home…Medical treatment-care teams

・Promoting an understanding of natural death・Advanced directive legislation for medical treatment
・Legislation for restriction and suspension of medical treatment（Isobe）

5（

International

・Standards for gastric fistula…Installation guidelines

・

In Japan there is no national consensus so a large gap exists between ideal and actual status on issues such as end-of-life locations,

Family, community, health care, long-term care）artificial feeding and discussion leadership so there is a great deal of confusion among patients, family and experts.

・Bringing back the “End-of-life culture”（round table talk）
・In dementia care, the concept of autonomy must be redefined as “being able
to express their needs and thoughts in relationships with those close tothem.” （Minooka）

comparative study

Basic Viewpoints

France, Australia, and Israel already have laws, and precedents for terminal stage nursing care, and medical treatment for doctors, nurses

・ The unique qualities of AD persons areconcealed rather than lost (Hasegawa)・ Even though his/her bodily functions havedeclined, the patient can still recognize
whether or not someone is paying attention
to him/her. （Uchide）

and care workers (International system study),

THE PERSON・I. General remarks
1. Worldwide issues and outlook on dementia end-of-life care(excerpt)
Kazuo Hasegawa
1. Final stages of dementia
The final stages of dementia are defined as the d, e, f of 7 of FAST classification as
stipulated by Reisberg. This period may continue from several months to several years
and there are no uniform limitations on this period. In this respect, dementia differs fromthe final or terminal stages of cancer.
2. Medical treatment issues in the final stages of dementia
These stages have no strictly defined borders and sometimes the patient shows
progression or regression while the stages overlap in an overall process from 10 to 15
years. In the light to moderate periods of dementia, behavioral disorders occur inapproximately 80% of the time as cognitive functions deteriorate, but these behavior
disorders are transient and disappear on reaching serious periods of dementia. This has
been pointed out as a major cause of social psychological disorders. It is also a cause of
severe stress on the family and care workers. This process is in most cases accompaniedby physical complications. The drugs for treatment sometimes induce side effects thatlead to a loss of awareness levels accompanied by so-called delusions (impaired
consciousness + insecurity + hallucinations) that are extremely difficult to cope with. Old
age related physical impairments unrelated to dementia sometimes occur and frequently
happen during the end-of-life care so that a closely coordinated effort by specialists suchas the medical and nursing staff is required.
3. Issues in end-of-life care of dementia
The principle behind Person Centered Care is the strong adherence to consistenttreatment from the light to intense stages of dementia. Namely, one can expect that theend-of-life treatment will remain consistent from the day the dementia patient is first met
until the terminal death period. This method doubts the view that a person suffering from ahigh degree of dementia will not be able to understand anything that is happening and will
become merely a human vegetable. The dementia patient may in fact be capable ofsensing the presence of someone there with the patient. This method believes that those
suffering from Alzheimer type dementia have not lost their individuality but rather it has
become concealed.
4. Help for the family and care workers
End-of-life treatment needs to go beyond universality, logic, and objectivity based on
known science and one must then strive for understanding by listening to the story of thepatient‟s life. This is treatment that departs from the “third person” approach and is closer
to a “you and me” relation that achieves an understanding of the patient‟s inner6

experiences. The mourning of the family must also sometimes be soothed and regret oranxiety on the part of the family must also be alleviated in what amounts to grief care.
5. Cultural background of end-of-life care
Mr. Fukazawa Shichiro wrote a novel called “The Ballad of Narayama” whose theme
was the simple abandonment of the elderly. The heroine named “Orin” was a female in apoor region who willingly went to a mountainous place used for abandoning elderly person
as the local custom for solving the problem of lack of food. Her attitude was to progress toa far-off different world that transcended death. Though this was a cruel custom, Orin feels
content with spending her final time alone because she can truly feel the love of her son,the long-lasting village tradition and the mountainous landscape she grew up in.
Cultural backgrounds behind end-of-life treatment include these deep human thoughts
about death, and build links to draw closer to others.
In recent years, terminal (end-of-life) medical treatment and care have become
facility-centered, especially hospital-centered care. However home-based end-of-life
medical treatment surrounded by a family with warm human bonds is essential for themost important event in life which is the completion of the individual life with dignity.

72. Round table talk: Home nursing, medical and end-of-life care
(1 section)
Kazuo Hasegawa, M.D., Ph.D.
Professor Emeritus, St. Marianna University, School of Medicine
Honorable President, Tokyo Research and Training Center for Dementia Care

Masako Akiyama
Visiting nurse, Executive director of Cares Corporation, General Manager of Hakujuji Home-visit
nursing care station）

Yukimi Uchide, Ph.D.
General Director, Social Welfare Foundation Tenjin-kai

Fumio Yamazaki
Home physician, Director of Care Town Kodaira Clinic

Hasegawa

I feel myself that forming new bonds is essential when caring for someone

suffering from dementia. Due to impaired cognitive functions, dementia patients lose theirsense of relationship, and peripheral disorders often referred to as problem behavior
occur since their own inner experience differs from what is actually possible to do in real
life. Care work involves some means to eliminate that difference and I think forming a
new relationship with that person is an essential element in care work.

YamazakiFor us human beings, seeing of someone about to depart from this life is an

important event and it certainly seems like a waste to entrust hospitals with that kind ofthing.
In-home care for terminal patients is becoming a part of daily life and can be a success if
daily life is stable and a determined physician and nurses willing to respond 24 hours a
day can handle this task. There are now nursing homes for the elderly and similar places
where the patients lead their daily lives so if a doctor is willing to help there then I feelthere is no need to check in to a regular hospital. To the contrary, if there is a reliable
outside visiting doctor or nurse system set up then there is no need to waste effort going toa hospital at the critical moment when nearing death.

Akiyama

I strongly feel that we have to return to the end-of-life care culture we oncehad. In the period around 1975, there was a reversal in hospital death rates versus home
deaths and in the 30 years since then the end-of-life care culture has disappeared.
I think we have to work towards passing along that end-of-life care culture by
involvement in the care location, knowing the significance of end-of-life care, and theimportance of the end of life, and this includes us and our young children becoming
familiar with this concept.

8

UchideI think eliminating the problem of dying alone requires not only of course

someone else being there but also that you must be committed when dealing with theelderly. I believe that a person's identity is not something within that person but rather
something that arises from within a relationship with the family doing the nursing and the
local area. I think it is interesting that the human side of a person is formed from many
relationships. That especially is what we have to seriously work towards, namely forming
bonds and relationships.

Yamazaki

The medical treatment team provides feeding tubes and PEGs in order toovercome that critical moment, but those treatments should be carried out only after
offering a clear explanation about what happens afterwards to patients that received theprocedure and obtaining the understanding by the patient.

93. Ethical issues and perspective of end-of-life care for the personwith dementia
Masako Minooka
1. How should we view the personhood of the person with dementia?
How people in society and care workers view the people with advanced dementia affecton ethical considerations and the quality of care that is provided.
(1) Overcoming the „Empty Shell‟ theory: Rather than viewing dementia sufferers as an
empty shell with a damaged personhood, we should respect them as „individual persons‟and recognize their personhood in every aspect.
(2) Accept the identity between now and past: It is essential that the care providers
respect the history of the individual.
(3) Ethics of interpretation: We must recognize that we see the people with dementia
through our own filter and interpret them in our sense of value.
(4) Concept of autonomy in dementia: In dementia care, the concept of autonomy must
be redefined as “being able to express their needs and thoughts in relationships withthose close to them.”(5) Ethical stance that respects the dignity of those with dementia
a. From <ethical stance for those exercise complete personal rights> to <ethical stance forthose who are moral subjects based on the relation with the people around them>b. From <ethical stance for those having competence> to <ethical stance for supporting
those with incomplete capacity>c. From <ethical stance for those capable of moral and logical thinking> to <ethical stancefor those with rich emotion as a human being>
2. Establishing a system for appropriate end-of-life care for the people withadvanced dementia “mitori”(1) Ethically appropriate end-of-life carea. “Mitori” means: “Mitori” is “care that support the elderly and their families in a naturalprocess towards death, rather than meaningless life-prolonging treatment.”b. Achieving balance from a medical, ethical and legal standpoint: Elements for achievinga proper balance in „end-of-life care‟ include: 1) The patient is medically in the terminal
stage and the futility of treatment is obvious, 2) The wish of the patient to refuse
life-prolonging treatment, 3) Consent by the family, 4) Procedural justice in the process ofdecision making, 5) Reaching a social consensus.
a) Medical viewpoint:- Defining terminal stage: Standardized definition is difficult. Diagnosis must be made byseveral physicians in each case. If consensus is not made, the advice by the third party(e.g. ethics consultation, ethics committee) is needed.
- Evidence Based Ethics--Tube feeding in patients with advanced dementia--

10Some medical research overseas shows that tube feeding for patients with advanced
dementia; a. does not prevent aspiration pneumonia, b. does not improve survival rates,c. It did not decrease the rise of decubitus ulcers and infection; so that PEG should not
be a standard medical procedure for the patients with advanced dementia, and oral
feeding should be the first choice.
b) Legal viewpoint:- Issue of medical consent: Legally, the patient is protected from intrusive actions by thedoctor for medical treatment since consent for medical treatment must be obtained fromthe patient. However there is recent debate on whether a substitute for medical treatment
consent is possible or not since medical treatment consent does not constitute a legal
action but rather “consent for violation of personal exclusive interests protected bylaw”.Therefore, the recent legal view is that consent by the family is no more than asubstitute for the consent of the patient and the right to give consent is not something thatcan be granted to a third party.
c) Ethical viewpoint:- Is artificial nutrition and hydration in terminal stages of dementia “treatment” or “dailycare”? Or is it “ordinary medical treatment” or “extra-ordinary medical treatment”?
Moreover, are “withholding” and withdrawing life-prolonging treatment, or “intention to”
and “foreseeing” death ethically different? Careful thought is needed on how to deal withthese issues.
(2) Process of decision making<Decision making by the patient>a. Right to self-determination: All individuals with mental capacity are guaranteed the rightto self-determination in the receiving of medical treatment. This is a rule of ethics called
respect for autonomy and is based on the legal principle of informed consent. However,adequate communication is essential in this regard in the final stages of dementia.
b. Mental capacity: The person with dementia should not be comprehensively evaluatedas incompetent. The evaluation on mental capacity must be carefully made over time andseparately for each case.
c. Concept of autonomy in dementia: Even in cases where the rational mental capacity isinadequate, the person with dementia can express the feeling, desire and needs inrelation with the people around him. The concept of autonomy in dementia care is not
only an individualistic aspect but also relational aspect of decision making. Implementing
this wider concept of autonomy facilitates shared decision making.
d. Shared Decision Making: In cases where mental capacity is inadequate, then residual
mental capacity should be evaluated per each issue rather than judging itcomprehensively incompetent, and a process of sharing and supporting self-decision
making is important. If the patient has no mental capacity then the family may act as a
substitute for making decisions.

11<Decision making by the family>a. Advance Directive: It contains 1) Instructions on medical treatment for prolonging life,
etc. (called a living will when it is written), 2) Designating a proxy who decide about thepatient‟s end-of-life care for him/her.
b. Substituted judgment: In cases where there are no clear and specific advance directives,
the surrogate consider the patient‟s sense of value and views and decide for him/her.
c. Best Interest judgment: The surrogate makes a decision considered to be in the bestinterests of the patient. The surrogate considers “Will the benefits of that treatment reallyexceed the load it places on the patient?” based on the medical facts and the patient‟ssense of values. Here it is essential that the family, doctor, nurses and care providers
mutually discuss this from the patient‟s point of view and avoid making decisionarbitrarily.
d. Proxy or Surrogate --Who will take the initiative in discussions from hereon in deciding
on end-of-life care?
If the patient designated a proxy then that person has number one priority. At this point,
guardian for the contracts of the daily life is considered that they can‟t decide about
medical matters. In actual practice, one of the family members has the role of surrogate.
To avoid paternalism, those providing the medical treatment should not be the final
decision maker.

(3) QOL of the person with end-stage dementia
a. Rethinking the medical goals, shifting from cure to comfort care: Goals in terminal stage
treatment should not be in accordance with the patient‟s sense of values. Answers to asurvey by the Ministry of Health, Labour and Welfare in 2008 revealed that 71% of thosefacing death within 6 months did not want life-extending treatment. Shifting fromcomplete curing of a disease to comfort care contributes to finding a hope.
b. The consideration of quality of life VS quantity of life: Life sustaining treatment might
contribute to quantity of life, but does not contribute to quality of life in end-stage
dementia.
c. Palliative care in terminal stage dementiaa) Ethical difference between “withholding or withdrawing life-prolonging treatment at thepatient‟s request” and “Euthanasia”
Here, “withholding or withdrawing life-prolonging treatment at the patient‟s request”
when it turns out to be futile means practicing comfort care or palliative care, andaccepting the natural course of disease. It is completely different concept fromeuthanasia. This euthanasia on the other hand is mainly an action to intervene directly inthe bodily functions of the patient to directly cause death. Active euthanasia is “doing
something” to end one‟s life while passive euthanasia is “doing nothing” to end one‟s life.

12b) Cure sometimes, comfort always
The care with concept of palliative care or hospice care for the patients with end-stage
dementia is implemented in foreign countries. Comport care means to reduce pain,
discomfort, dyspnea, etc.
c) Shifting from terminal care to end-of-life care
Essential actions to achieving a peaceful end-of-life are: 1) Recognizing the futility oftreatment 2) Promoting communication with those who decide policy 3) Assent on the
end-of-life process 4) starting end-of-life comfort care at a timely opportunity.

(5) Issues with family care givers (for supporting them)a. Role and limits on family caregivers: Family caregivers actually provide care and arealso advocates for the people with dementia. But they have burdens physically, mentallyand economically. It is important to support family by counseling, advising and utilizing
short-stay or respite-care and sometimes placing the patient in a facility should beconsidered to improve QOL of family members and person with dementia.
b. QOLs (Quality of Lives) and QWL (Quality of Working Life)a) QOL in the relationship-- From Quality of Life to Quality of Lives

Rather than just the QOL of the person with dementia, achieving a balance with the
QOLs of the people involved is also important.
b) QWL (Quality of Working Life;“Active and energetic working life”)

The quality of the working life of the care givers/workers is a factor affecting the QOL ofboth the family and the person with dementia.
c. Degree of satisfaction with end-of-life care (=boosting the quality of end-of-life care):
The 5 factors for boosting end-of-life care are comfort, QOL, dignity, and support for thefamily and staff. This therefore yields: [satisfaction with end-of-life care] = [satisfaction of
person with dementia] + [family satisfaction] + [satisfaction of nursing/caregiving staff].

(6) Importance of Advance Directive and Advance Care Planning
Proper end-of-life care requires respecting the wishes of the person with dementia. The
advance directive includes; the wish to reject treatment, where the patient desires to stayin his/her final days, who the patient wants nearby when the time comes, who should
decide about the end-of-life care as a proxy, and what is needed to spend one‟s final daysin peace, etc. To spent peaceful final days as one wish, the prevalence of Advance
Directive and the movement “let‟s think about our own end-of-life care” are important.

13

II. “International Comparative Study on Terminal Care System”“International Comparative Study on Ideal Terminal Care and Death”

Report and Analysis
1. Viewpoints of international studies (excerpt)
Kanao Tsuji
French historian, Philippe Ariès reports the following.
Dying in a hospital started happening because the hospital had already become a place where
treatment could be given that was not available in the home. The hospital was originally a place toaccommodate pilgrims and the sick and needy of society but it gradually evolved into medical
centers where one received treatment and the fight with death was carried out. Formerly people
died in hospitals because the physician’s treatment was a failure. Nowadays however, hospitals are
not places for recovery but have become places to die”. “Death (currently) is now a technicalphenomenon in which treatment is stopped. That stoppage of treatment is decided by the physician
and the medical team at the hospital.

(Essais sur l'histoire de la mort en Occident, 1975)

These comments are undeniable even now and the problems involved are debated fromeach and every aspect.
However in Japan which is rapidly becoming an elderly society, a review of care forterminal stage patients, which is said to have been a large problem, is now making slow
but steady progress.
Nevertheless, not very many international comparative studies of terminal care for theelderly have been carried out so far.
Upon then launching an international investigation and research effort on home nursing
care-treatment and end-of-life care, our investigative team embarked on a debate basedon the following 2 question points.

Question 1 is “Why are hospital deaths increasing

while deaths at home are growing fewer?”; and Question 2 “What causes the differencesin places where we face death?”.
We considered the following assumption about these 2 questions, namely “the differencein terminal stage treatment is limiting the location of the treatment and therefore the place
to die.” Advances in medical technology stem from scientific research so a certain
recommended medical treatment is largely common across the world. However due to thedifference in rates at death locations, the handling of “death” as something dominatedlargely by medical treatment is expected to differ according to the specialists in eachcountry.
Namely, the judgment of medical staffs in each country can be amply predicted to havea large impact on deciding the type of medical treatment for terminal cases. That leaves
the following question which is: in countries where most treatment is at home what type ofsystems allow us to “apply the brakes” in what tends to be excessive medical treatment?

14

We decided that it was necessary to get actual comments from the care staff at end-of-life
treatment locations. However, our past experience showed that even making vague
queries to the health care staffs in various countries would only lead to ideal answers
coming back to us. So we decided on the method of creating typical clinical cases andasking the staffs own opinions and how they dealt with those cases. Specifically weassumed a Case A which was terminal cancer; and Case B which was severe dementia.
We then instituted a comparative international study with the cooperation of theInternational Longevity Centers in France, UK, the Netherlands, Israel and Czech as wellas The National Council for Palliative Care in UK, Hammond Care in Australia and the
Alzheimer‟s association in Korea.
This investigative effort consisted of two surveys, one was an International Comparative
Study on Terminal Care System involving systems and guidelines on death and end-of-life
treatment in each country; and the other was an International Comparative Study on Ideal
Terminal Care and Death which included the above two A and B cases.

15

2. International comparative study on terminal care system (1 section)
Taeko Nakashima- This study has the goal of clarifying terminal care systems as one type of background for
defining replies to the “International Comparative Study on Ideal Terminal Care andDeath” to acquire an understanding of laws and guidelines for care and treatment.
- Replies made to this study were obtained from the International Longevity Centers in thealliance countries of France, UK, the Netherlands, Israel, and Czech. The National
Council for Palliative Care cooperated with our study requests via the ILC-UK, andHammond Care in Australia and the Alzheimer‟s association in Korea cooperated withus.
1. Existence of Laws, Regulations
i. In your country, are- Laws and regulations have been established in France, Australia,
there any laws and/or
and Israel.
regulations that set rules - Such laws still have not been established in Japan, the UK, Czech,
on medical and careand the Netherlands.
activities by doctors,- France enacted Act No. 2005-370 (normally called the “Leonetti
nurses and direct careLaw”) in April 22, 2005 that involves end-of-life treatment andworkers specificallypatient‟s rights” which eases palliative medical treatment
targeting the terminal
regulations and terminal stage treatment.
care like Mrs. A‟s and Mr. - Israel enacted the Act of the Dying Patient law in December 2006.
B‟s cases? If yes, pleasealso briefly describe
these laws/regulations,
including their titles.
ii. Are there public- Many countries provide assistance based on existing medical andsubsidies (esp. fornursing care services, etc.
patient) for terminal care - In France care worker family or relatives can obtain an allowancein your country? If yes,of 49 euros per day to allow being at home until the death of aplease also briefly
patient in the terminal stage.
describe theselaws/regulations,
including their titles.
iii. In your country, are- Laws clearly prohibit euthanasia: In France, UK, Netherlands, andthere laws, regulations
Israeland/or guidelines that
- In the UK, euthanasia and assisted suicide are seen as violations
set rules on death withof the law. However, in 2010, the public prosecutor‟s office issued
dignity and/or
guidelines for law enforcement agencies stating in what situations
euthanasia (e.g.
assisted suicides should be prosecuted and specifying in what
implementation,
circumstance prosecuting a case is not in the public interest.
prohibition, etc.)? If yes,
- Israel also prohibits active euthanasia or medical staff assisted
please also briefly
suicides under laws regarding terminal care patients.
describe them.
- Even in Czech and Japan that have no laws or regulation
regarding euthanasia, the act of euthanasia is basically notallowed.
- In Czech, the Czech Medical Chamber）declared that care should
not be provided that offers no positive results.
- The Netherlands enacted an (”Administrative act for supporting
assisted suicides and termination of life based on official request”)
euthanasia law. The law covers a physician administering a drugwith the goal of ending the patient‟s life (euthanasia) or usage by
the patient himself from the doctor‟s prescription(assisted suicide).
This euthanasia law specifies strict conditions for the doctor to end
the patient‟s life, or the doctor to assist the patient in ending his
own life.
- Euthanasia is not permitted in any other country except theNetherlands and no statistical information is available.

162. Existence of Guidelines
i. In your country, arethere any rules and/or
guidelines made byprofessionalorganizations that set
rules on medical andcare activities bydoctors, nurses anddirect care workers
specifically targeting theterminal care like Mrs.
A‟s and Mr. B‟s cases? If
yes, please also briefly
describe theserules/guidelines.

- There are multiple documents and guidelines on this subject inFrance, the UK, Australia, Netherlands and Japan- In France there are various documents on this subject regarding
cancer and terminal care and various document regarding patient
rights based on work of the social problems committee andguidelines from the Palliative Care Society.
- In the Netherlands, guidelines on palliative care have been draftedby the Netherlands Physicians Council. These specify thedecision-making process including instruction for starting palliative
care, conditions for use of painkillers, and communication with thepatient and close relatives. It also describes the drugs for use andreports that the physician must provide.
- National planning and national strategies for terminal care andpalliative care have been established in France, the UK, Australia.
- In 2008, France announced its “Development of the Palliative Care
Program for 2008-2012 (“Programme de développement des soins
palliatif 2008- 2012”) as it national plan on a scale of 230 million
euros.
- The UK Health Ministry announced its ”End of life Care Strategy” in2008.

3. Death for terminal stage dementia sufferers
i. In your country, are-There are no laws or regulations governing this in any of thethere laws, regulations,countries.
rules and/or guidelines- However, in France the Leonetti Law specifies a consultationthat set rules on medical
process: a decision is made based on the patient‟s advanceand care activities for
directive (if present), opinions of close family and relatives, opinion
older persons who haveof the doctor, and guardians (if present) and the decision must be
communication
preserved for the record.
difficulties due to such
- In the UK, The Mental Capacity Act (2005) for England and Wales
conditions as dementia?
and the Adults With Incapacity Act (Scotland) 2000）have been
If yes, please briefly
established.
describe them.
The system under the Mental (decision-making) Capacity Act has
been extended to support self-determination in the overall life-styleincluding medical treatment in a carry-over from the previous
system centered mainly on asset management via Enduring Powerof Attorney, etc. This act covers those 16 years of age and over,suffering from learning disabilities, dementia, mental disability, andbrain damage (through injury), and cerebral apoplexy, etc.
- Australia allows the drafting of Advance Care Directives. This
document expresses the subject persons wishes for treatment anddescribes for example whether the subject wishes to receive tube
feeding or not or wishes resuscitation performed or not.
The subject person can also provide an Enduring Power ofAttorney. This person is appointed by a legally binding document
specifying who can decide on and handle assets and financial
matters even if the subject person for example loses their mental
capacity due to severe dementia, etc. The subject person can also
specify a guardian (near relative, friend or legal representative) in
the same way. If for some reason, the subject person is unable torender consent on carrying out or quitting a treatment or otherprocess, then the guardian can fill the role of that person‟srepresentative or proxy.
ii. In Japan, it is common- In the Netherlands and UK there is an organization partiallyfor family members todeveloped for handling such cases. In France and Australia, ahave conflicts with otherfamily conference is held or physicians or other specialists consult
family members and/orwith the family to resolve the matter.
health care providers- In the UK, the IMCA（Independent Medical Capacity Advocate）
when the patient cannot
was established as an organization to act as a proxy agent working
express decisions.
to assist or provide for the maximum benefit of the subject person
Please tell us of any
in case of major medical treatment when that person has lost themeasures or means forcapacity for self-determination or has no family or friends tomediation in such cases
represent him. The IMCA itself does not directly make decisions
but finds out and expresses what is the maximum benefit to thesubject to the NHS（National Health Service）and other local
self-governing bodies. The IMCA can be called even if the subject

17

person has family and friends if they are involved in cases ofabuse. The IMCA can also voice official objections when a decision
is being carried out that does not conform to the best interests ofthe subject person.
- In Japan no such organization has been established.
However the Medical Alternative Dispute Resolution (ADR)
arbitration association was established in March, 2010 and related
study is underway.
4. Use of PEG (tube feeding)i. In your country, how- None of the following replies gives a clear understanding via
common is it to use
statistical materials, etc.
feeding tubes for elderly- The UK, Israel and Japan tend to use surgery for artificial feeding
patients who are in thein the terminal stage. However Czech does not use it. In Australia
terminal phase?
there are comparatively few cases using tube feed in the terminal
care stage.
ii. In your country, are- Most countries have no regulations on tube feed in the terminal
there any laws and/or
stage
guidelines that set rules- In Israel, terminal care laws allow the patient‟s doctor to refrainon usage of artificialfrom tube feeding and fluids based on his/her decision in patientsnutrition tube feeding innear death.
the terminal phase (e.g.
- France has guidelines provided by the French Cancer Center
implementation,(FNCLCC). These suggest not performing enteral nutrition whenprohibition, etc.)?
patient PS（Performance Status）is 2（the patient cannot work due
to sickness）or greater or remaining life is about 3 months.
- In the Netherlands, a medical specialists council has issued
treatment
Guidelines specifying when tube feeding is needed. Use of artificial
Feeding and tube feeding in the case of terminal patients is left up
to the physician treating that patient, however, overall patient
treatment laws obligate doctors to comply with medical ethics
standards. Moreover, the nation-wide nursing home organization in
the Netherlands called Arcares has issued multi-occupationalguidelines in 2001 regarding nutrition and fluid replacement inincoming patients. These guidelines specify what measures to takeregarding all types of circumstances.

18

3. International comparative study on ideal terminal care and death(1 section)
Kanao Tsuji, Daisuke Watanabe, Taeko Nakashima
This study was made by the theoretical question method in a document question format
targeting 8 countries (Japan, France, United Kingdom, Netherlands, Israel, Czech,
Australia and Korea). It assumes the following two theoretical terminal cases of: (Case A:
Terminal cancer, Case B: Dementia) and investigated the ideal judgment an expert would
make as well as a practical judgment the expert might make under actual circumstances.
Moreover, in order to analyze the difference between ideal and practical judgments thestudy also examined the awareness regarding medical treatment and nursing experience,
end-of-life care experience, ideal death and ideal end-of-life care.
The investigation was made by the International Longevity Center-Japan, as well as by
ILC Centers in the overseas countries of France, UK, the Netherlands, Israel and Czech.
The investigation in the UK was made with the cooperation of The National Council for
Palliative Care. The investigation in Korea was made by the Korean Alzheimer‟s
association and in Australia with the cooperation of two institutes (Hammond Care andRamsay Health).
The investigation in Japan centered on 12 facilities (7 nursing homes, 2 group homes, 1complex facility (a combination of nursing home, long-term senior health care facility,
small scale multipurpose home-care nursing, group home, clinic), 1 home-visit nursing
care station and 1 hospital as well as on 10 physicians.
Investigation period was from October to December 2010.
In this study, strict ethical control was exercised to ensure personal information privacy
and the investigation was implemented anonymously following the judgment on ethics by
the ethics committee at the Foundation of Social Development for Senier Citizens.
Number of Respondents by Country

Japan
FranceU.K.
IsraelAustralia
Netherland
South
Korea
Czech
Total

Medicaldoctor
20
9.0%
12
70.6%
5
50.0%
25
39.7%
11
19.3%
10
35.7%
16
20.0%
16
28.6%
115
21.6%

Nurse
59
26.7%
3
17.6%
1
10.0%
17
27.0%
20
35.1%
14
50.0%
44
55.0%
17
30.4%
175
32.9%

Direct care
worker
102
46.2%
0
0.0%
0
0.0%
0
0.0%
8
14.0%
0
0.0%
2
2.5%
4
7.1%
116
21.8%

19

Socialworker
21
9.5%
0
0.0%
4
40.0%
15
23.8%
11
19.3%
4
14.3%
18
22.5%
12
21.4%
85
16.0%

Other
(PT,OT, etc.)
18
8.1%
2
11.8%
0
0.0%
6
9.5%
7
12.3%
0
0.0%
0
0.0%
4
7.1%
37
7.0%

N.A.

Total

1
0.5%
0
0.0%
0
0.0%
0
0.0%
0
0.0%
0
0.0%
0
0.0%
3
5.4%
4
0.8%

221
100.0%
17
100.0%
10
100.0%
63
100.0%
57
100.0%
28
100.0%
80
100.0%
56
100.0%
532
100.0%

International Comparative Study Summary- Japanese often think about the subject of death. (P23)- In Japan, a comparatively small percentage wish for “end-of-life care that allows
spending as much time as possible together even for example if no longer able tospeak” or for “end-of-life care in a system that allows receiving as much treatment
and nursing as possible”. Moreover, they tend to take formal religion rather lightly.
(p24, p25)
- In Japan, there is no nation-wide consensus so there is a large gap between ideal
and actual circumstances on issues such as “location for terminal stage treatment,”“artificial feeding” and “discussion leadership,” leading to a great deal of confusion
among the patient, family and specialists. (p26、p27, p30, p31, p34)
- Japanese specialists in many cases place comparatively heavy emphasis on“family opinions” and “length of remaining life” when setting treatment guidelines.
(p28 - p30)
- The lengthy waiting period for space at senior citizens home and long-term careclinics is a fact of life in Japan and is probably due to the large percentage ofelderly in society. (p33)- There are clearly established laws and guidelines for end-of-life care in France,
the UK and Australia where a large number of responses diagnosed Mr. B‟s caseas terminal and at the same time did not select artificial feeding. Whether this large
number of cases is due to the law functioning effectively or is a national trait issomething that should be further investigated. (p35)- Though among specialists, doctors tend to attach importance to “a prepared
death surrounded by one‟s family,” nurses tend to stress “death within a shortperiod that does not stress or inconvenience others” which implies that nurses
attach importance to the lifestyle of the patient and family. (p36)20

【Case A: Terminal cancer】
Mrs. A (85 yrs. old) is a terminal cancer patient and has 1 month to live. She iscurrently hospitalized and needs medicine to control pain on a daily basis. She
sometimes becomes semi-conscious, but she can communicate verbally and has
sufficient memory retention to lead daily life without problems. However, her
physical capacity is declining, and she needs assistance in toileting. Her husband
has already passed away, and her son and his wife live close by (15 minutedrive). Yet, both the son and his wife work outside and do not have much time on
weekdays. Mrs. A‟s primary income is her pension, and it is difficult for her to pay
for renovating her house (e.g. bathroom). Mrs. A prefers to spend her final days athome, where she has memories with her husband, but she says “I shouldn‟t ask
for too much.”【Case B: Severe dementia】
Mr. B (80 yrs. old) lives with his wife at home. It has been 10 years since he wasdiagnosed with dementia. Although his consciousness is not impaired, he can only
respond to families and direct care workers with eye movements. In general, it isextremely difficult for him to communicate with others. About a half month ago, he
had high fever and cough, so he went to hospital and was diagnosed withpneumonia. Currently, he is unable to swallow foods, and he takes medicine andnutrition through IV. Because he cannot receive nutrition by mouth, he may soonneed artificial nutrition (ex. tube feeding). However, he is not expected to live longeven with this treatment. His wife (80 yrs. old) hopes to have him stay and spend
last days at home. She also hopes to spend as long a time with him as possible.
Yet, her caregiving capacity is low, and there are no relatives nearby.

21

＜AWARENESS OF DEATH AND END-OF-LIFE CARE＞
Japanese rate was highest for both “I think often about death” and “I feelanxiety about death”. Next highest after Japan is Korea. Both Israel andCzech had a low percentage for this question as shown below.
How often do you think about death?（Q4-1）(The total percentage of those answering “Very often” and “Often” is shown below.)

Do you usually feel anxiety about and/or fear of death?（Q 4-2）
(The total percentage of those answering “Very much” and “Somewhat” is shown
below.)

22

Japan had a comparatively low percentage of positive replies toquestions about one‟s spouse or close relative such as: “Want to spend asmuch time as possible together even if unable to have a conversation” ,“Want environment with as much medical care and service as possible” ,“Want to shorten the patient‟s final suffering period” and “Want treatment tofollow the patient‟s religious or cultural rituals”. Moreover, Japanese tend to
take formal religion rather lightly.
Considering “ideal terminal care” for your spouse and family (parents andchildren), what do you think of the following statements?（Q5-1）
Want to spend as much time as possible together, even if unable to have
conversation(Total percentage of people replying “Strongly agree” and “Agree somewhat”)

Want environment prepared so as to receive as much medical and care service aspossible(Total percentage replying “Strongly agree” and “Agree somewhat”)

23

Want to shorten the patient‟s final suffering period(Total percentage replying “Strongly agree” and “Agree somewhat”)

Want treatment to follow the patient‟s religious or cultural rituals(Total percentage replying “Strongly agree” and “Agree somewhat”)

24

＜THOSE DECIDING END-OF-LIFE CARE＞
In Japan and Korea, judgments were different with a large percentage
believing that “Mrs. A herself” should ideally have decision-making rights
yet a large percentage believing that her “son” should have actual rights. In
Czech, the UK and Netherlands there was no difference in judgments witha large percentage believing that Mrs. A herself should have actual rights.
Mrs. A‟s Case: Whose opinion do you think “should be given the highest
priority” in discussions that decide medical treatment and terminal carepolicies?（Q2-3）

Japan
FranceU.K.
IsraelAustralia
Netherlands
South
Korea
Czech
Total

Mrs.A

Mrs.
A's
son

167
75.6%
12
70.6%
9
100.0%
57
90.5%
46
83.6%
28
100.0%
63
79.7%
13
23.6%
395
75.0%

34
15.4%
0
.0%
0
.0%
2
3.2%
5
9.1%
0
.0%
9
11.4%
11
20.0%
61
11.6%

Nurse orPrimary
Direct care
Specialist
Socialcare
worker who
physicianworkerdoctorhas daily
contact
8
2
4
5
3.6%
.9%
1.8%
2.3%
1
2
1
1
5.9%
11.8%
5.9%
5.9%
0
0
0
0
.0%
.0%
.0%
.0%
0
1
3
0
.0%
1.6%
4.8%
.0%
2
0
1
0
3.6%
.0%
1.8%
.0%
0
0
0
0
.0%
.0%
.0%
.0%
0
1
5
1
.0%
1.3%
6.3%
1.3%
7
19
2
3
12.7%
34.5%
3.6%
5.5%
18
25
16
10
3.4%
4.7%
3.0%
1.9%

Other

Total

1
.5%
0
.0%
0
.0%
0
.0%
1
1.8%
0
.0%
0
.0%
0
.0%
2
.4%

221
100.0%
17
100.0%
9100.0%
63
100.0%
55
100.0%
28
100.0%
79
100.0%
55
100.0%
527
100.0%

Mrs. A‟s Case: Based on your previous experience, whose opinion do you thinkshould get actual priority in discussions that decide medical treatment andterminal care policies?（Q2-3sq）

Japan
FranceU.K.
IsraelAustralia
Netherlands
South
Korea
Czech
Total

Mrs.A

Mrs.
A's
son

31
14.0%
5
29.4%
6
66.7%
19
30.2%
18
34.0%
12
42.9%
21
26.6%
41
73.2%
153
29.1%

142
64.3%
5
29.4%
0
.0%
30
47.6%
17
32.1%
6
21.4%
51
64.6%
1
1.8%
252
47.9%

Nurse orPrimary
Direct care
Specialist
Socialcare
worker who
physicianworkerdoctorhas daily
contact
27
8
5
8
12.2%
3.6%
2.3%
3.6%
2
4
0
0
11.8%
23.5%
.0%
.0%
0
3
0
0
.0%
33.3%
.0%
.0%
2
6
2
1
3.2%
9.5%
3.2%
1.6%
8
10
0
0
15.1%
18.9%
.0%
.0%
2
4
2
1
7.1%
14.3%
7.1%
3.6%
3
1
3
0
3.8%
1.3%
3.8%
.0%
2
9
3
0
3.6%
16.1%
5.4%
.0%
46
45
15
10
8.7%
8.6%
2.9%
1.9%

25

Other

Total

0
.0%
1
5.9%
0
.0%
3
4.8%
0
.0%
1
3.6%
0
.0%
0
.0%
5
1.0%

221
100.0%
17
100.0%
9100.0%
63
100.0%
53
100.0%
28
100.0%
79
100.0%
56
100.0%
526
100.0%

The majority believed that the “Wife” should ideally have decisionmaking rights on end-of-life care for Mr. B but there was an increasing trend
in each country toward actual rights going to the “Physician”.
Mr. B‟s Case: Whose opinion do you think “should be given the highest
priority” in discussions that decide medical treatment and terminal carepolicies?（Q3-4）
Mr.B

Mr.B's
wife

20
9.0%
0
France
.0%
2
U.K.
20.0%
5
Israel7.9%
11Australia
20.0%
4Netherlands
14.3%
South
14
Korea
17.9%
1
Czech
1.9%
57
Total
10.8%

177
80.1%
16
94.1%
7
70.0%
45
71.4%
30
54.5%
23
82.1%
53
67.9%
20
37.0%
371
70.5%

Japan

Nurse or Direct
Primary
Specialist care worker Social
care
Other
physician who has daily worker
doctorcontact
7
1
2
12
2
3.2%
.5%
.9%
5.4%
.9%
0
1
0
0
0
.0%
5.9%
.0%
.0%
.0%
0
0
0
0
1
.0%
.0%
.0%
.0% 10.0%
2
5
1
0
5
3.2%
7.9%
1.6%
.0%
7.9%
6
2
3
1
2
10.9%
3.6%
5.5%
1.8%
3.6%
0
1
0
0
0
.0%
3.6%
.0%
.0%
.0%
2
1
6
1
1
2.6%
1.3%
7.7%
1.3%
1.3%
7
23
2
1
0
13.0%
42.6%
3.7%
1.9%
.0%
24
34
14
15
11
4.6%
6.5%
2.7%
2.9%
2.1%

Total
221
100.0%
17
100.0%
10
100.0%
63
100.0%
55
100.0%
28
100.0%
78
100.0%
54
100.0%
526
100.0%

Mr. B‟s Case: Based on your previous experiences, whose opinion do you thinkshould get actual priority in discussions that decide medical treatment andterminal care policies?（Q3-4sq）

Japan
FranceU.K.
IsraelAustralia
Netherlands
South
Korea
Czech
Total

Mr.B

Mr.B's
wife

2
.9%
1
5.9%
1
11.1%
3
4.8%
3
5.4%
0
.0%
5
6.5%
7
13.0%
22
4.2%

130
59.4%
9
52.9%
4
44.4%
37
58.7%
32
57.1%
16
57.1%
54
70.1%
21
38.9%
303
57.9%

Nurse or Direct
Primary
Specialist care worker Social
care
Other
physician who has daily worker
doctorcontact
42
7
14
21
3
19.2%
3.2%
6.4%
9.6%
1.4%
3
3
0
1
0
17.6%
17.6%
.0%
5.9%
.0%
1
1
1
0
1
11.1%
11.1%
11.1%
.0% 11.1%
7
11
1
0
4
11.1%
17.5%
1.6%
.0%
6.3%
10
5
4
1
1
17.9%
8.9%
7.1%
1.8%
1.8%
2
8
0
1
1
7.1%
28.6%
.0%
3.6%
3.6%
9
1
8
0
0
11.7%
1.3%
10.4%
.0%
.0%
4
19
1
1
1
7.4%
35.2%
1.9%
1.9%
1.9%
78
55
29
25
11
14.9%
10.5%
5.5%
4.8%
2.1%

26

Total
219
100.0%
17
100.0%
9100.0%
63
100.0%
56
100.0%
28
100.0%
77
100.0%
54
100.0%
523
100.0%

<POLICY GOALS FOR NURSING & MEDICAL TREATMENT>As their reason for selecting a “best choice” policy for Mrs. A, the response
from many Japanese was to “More likely to fit family‟s wish” and few
answered “Expected improvement of QOL”.
As a professional, which of the following do think is “the best choice” as abasic principle for working with Mrs. A?（Q2-6）
Aggressive Aggressive Aggressive
Pain control
treatment treatment treatment
Do
only(without
withwith highwithnothingaggressive
anticancer level medical alternative
specialtreatment)
drug
services
medicine

Other

total

Japan

.9%

.5%

1.8%

91.9%

.0%

5.0%

100.0%

France

.0%

.0%

.0%

94.1%

.0%

5.9%

100.0%

U.K.

.0%

.0%

.0%

50.0%

.0%

50.0%

100.0%

Israel

.0%

3.2%

.0%

87.3%

4.8%

4.8%

100.0%

Australia

1.8%

.0%

.0%

90.9%

.0%

7.3%

100.0%

Netherlands

.0%

.0%

.0%

82.1%

.0%

17.9%

100.0%

Korea

2.5%

7.6%

6.3%

79.7%

1.3%

2.5%

100.0%

Czech

.0%

3.8%

.0%

90.6%

.0%

5.7%

100.0%

Total

1.0%

2.1%

1.7%

88.2%

.8%

6.3%

100.0%Why did you choose the response in the previous question? Please choose thereason that you think is “most important.” (Q2-6sq)
More
PossibleHigh
Expected
Set byRespect for likely totopossibility improve
national/
Economical Mrs. A’s
fit
Other
recover for longer ment offacility
dignity family’s
fully
life
QOL
guideline
wish

Total

Japan

.0%

1.4%

21.4%

1.4%

64.1%

7.7%

.0%

4.1% 100.0%

France

.0%

.0%

52.9%

.0%

41.2%

.0%

5.9%

.0% 100.0%

U.K.

.0%

.0%

62.5%

.0%

25.0%

.0%

12.5%

.0% 100.0%

Israel

.0%

1.6%

59.7%

.0%

33.9%

.0%

1.6%

3.2% 100.0%

Australia

.0%

1.8%

40.0%

1.8%

52.7%

.0%

.0%

3.6% 100.0%

Netherlands

.0%

.0%

39.3%

.0%

57.1%

.0%

.0%

3.6% 100.0%

Korea

1.3%

.0%

29.5%

.0%

56.4%

6.4%

.0%

6.4% 100.0%

Czech

1.8%

1.8%

34.5%

1.8%

60.0%

.0%

.0%

.0% 100.0%

Total

.4%

1.1%

33.1%

1.0%

56.0%

4.2%

.6%

3.6% 100.0%

27

When responding with a reason in the case of actual treatment of Mrs. A,
few of those in Japan responded with “Expected improvement of QOL.”(Q2-7-2)Which of the following do you think should actually be taken as a basic
principle for working with Mrs. A? Please choose the most likely response
based on your experience.（Q2-7）
Aggressive Aggressive Aggressive
Pain control
treatment treatment treatment
Do
only(without
withwith highwithnothingaggressive
anticancer level medical alternative
specialtreatment)
drug
services
medicine

Other

total

Japan

5.9%

.9%

3.2%

83.1%

2.3%

4.6%

100.0%

France

.0%

.0%

5.9%

82.4%

5.9%

5.9%

100.0%

U.K.

.0%

14.3%

.0%

71.4%

.0%

14.3%

100.0%

Israel

6.5%

11.3%

.0%

72.6%

3.2%

6.5%

100.0%

Australia

3.5%

5.3%

.0%

82.5%

.0%

8.8%

100.0%

Netherlands

3.6%

.0%

.0%

78.6%

3.6%

14.3%

100.0%

Korea

5.2%

5.2%

3.9%

85.7%

.0%

.0%

100.0%

Czech

13.2%

15.1%

.0%

66.0%

1.9%

3.8%

100.0%

Total

6.0%

4.8%

2.1%

80.0%

1.9%

5.2%

100.0%Why did you choose the response in the previous question? Please choose thereason that you think is “the most important”.（Q2-7sq）
More
PossibleHigh
Expected
Respect
Set bylikely totopossibility improvefor Mrs.
national/fa
Economical
fit
Other
recover for longer ment ofA’scilityfamily’s
fully
life
QOL
dignityguideline
wish

Total

Japan

.0%

5.5%

15.6%

2.3%

54.1%

16.1%

.5%

6.0% 100.0%

France

.0%

6.3%

43.8%

.0%

31.3%

.0%

12.5%

6.3% 100.0%

U.K.

.0%

12.5%

50.0%

.0%

37.5%

.0%

.0%

.0% 100.0%

Israel

.0%

3.3%

36.1%

3.3%

19.7%

6.6%

23.0%

8.2% 100.0%

Australia

.0%

1.8%

40.4%

1.8%

42.1%

7.0%

.0%

7.0% 100.0%

Netherlands

.0%

3.6%

32.1%

.0%

57.1%

3.6%

3.6%

.0% 100.0%

Korea

.0%

3.9%

22.1%

1.3%

58.4%

9.1%

.0%

5.2% 100.0%

Czech

5.5%

3.6%

34.5%

.0%

38.2%

1.8%

16.4%

.0% 100.0%

Total

.6%

4.4%

26.0%

1.7%

46.9%

10.0%

5.2%

5.2% 100.0%

28

When selecting a reason for their “best choice” of treatment policy for Mr.
B, many in the UK, Australia, and the Netherlands responded with
“Respect for Mr. B's dignity” while in Japan most responses were “Morelikely to fit family‟s wish.”
As a professional, which of the following do you think is “the best choice” as abasic principle for working with Mr. B?（Q3-7）
Aggressive
treatment
Do
Artificial
Rehabilitat Keep the current
withnothing
nutritionion
treatment
alternative
specialmedicine

Other

Total

Japan

46.2%

.9%

16.7%

27.1%

2.7%

6.3%

100.0%

France

17.6%

.0%

23.5%

35.3%

11.8%

11.8%

100.0%

U.K.

22.2%

.0%

11.1%

22.2%

.0%

44.4%

100.0%

Israel

50.8%

.0%

7.9%

25.4%

7.9%

7.9%

100.0%

Australia

15.1%

.0%

9.4%

45.3%

11.3%

18.9%

100.0%

Netherlands

29.6%

.0%

11.1%

25.9%

14.8%

18.5%

100.0%

Korea

59.7%

2.6%

6.5%

22.1%

2.6%

6.5%

100.0%

Czech

45.5%

2.3%

6.8%

38.6%

.0%

6.8%

100.0%

Total

43.2%

1.0%

12.3%

29.2%

4.9%

9.4%

100.0%Why did you choose the response in the previous question? Please choose thereason that you think is “most important”.（Q3-7sq）
More
PossibleHigh
Expected
Set byRespect for likely totopossibility improve
national
Economical Mr. B's
fit
other
recover for longer ment ofor facility
dignity family's
fully
life
QOL
guideline
wish

Total

Japan

2.3%

20.5%

11.0%

.0%

26.5%

35.6%

.0%

4.1%

100.0%

France

.0%

11.8%

35.3%

.0%

35.3%

17.6%

.0%

.0%

100.0%

U.K.

14.3%

.0%

14.3%

.0%

71.4%

.0%

.0%

.0%

100.0%

Israel

1.6%

6.5%

38.7%

.0%

30.6%

9.7%

8.1%

4.8%

100.0%

Australia

5.7%

1.9%

22.6%

1.9%

54.7%

5.7%

.0%

7.5%

100.0%

Netherlands 11.1%

3.7%

22.2%

.0%

40.7%

7.4%

3.7%

11.1%

100.0%

Korea

2.6%

32.1%

16.7%

1.3%

34.6%

10.3%

.0%

2.6%

100.0%

Czech

3.9%

3.9%

49.0%

2.0%

35.3%

2.0%

3.9%

.0%

100.0%

Total

3.3%

15.6%

21.6%

.6%

33.7%

19.6%

1.6%

4.1%

100.0%

29

In France and the UK, the “Artificial nutrition” as the actual treatment
policy for Mr. B had a low percentage of replies. In Japan, Israel, Korea andCzech many respondents were in the “Artificial nutrition” group. This
“Artificial nutrition” showed a particularly large gap between ideal goal andactual goals. This also had the largest percentage of actual use.
The most often given reason for actual use of this in Mr. B‟s case inJapan is that it “High possibility for longer life” and “More likely to fit family'swish.”
Which of the following do you think should be actually taken as a basic
principle in working with Mr. B? Please choose the most likely response basedon your experience.（Q3-8）
Aggressive
treatment
Keep theArtificial
with
Rehabilitation
current
nutrition
alternative
treatment
medicineDonothing
special

Other

Total

Japan

71.6%

.0%

6.0%

18.8%

1.4%

2.3%

100.0%

France

17.6%

.0%

5.9%

52.9%

17.6%

5.9%

100.0%

U.K.

33.3%

.0%

.0%

50.0%

.0%

16.7%

100.0%

Israel

70.5%

.0%

3.3%

18.0%

6.6%

1.6%

100.0%

Australia

41.2%

.0%

9.8%

35.3%

2.0%

11.8%

100.0%

Netherlands

44.4%

.0%

3.7%

33.3%

11.1%

7.4%

100.0%

Korea

69.6%

2.5%

3.8%

20.3%

.0%

3.8%

100.0%

Czech

63.8%

.0%

4.3%

21.3%

4.3%

6.4%

100.0%

Total

63.6%

.4%

5.3%

23.1%

3.2%

4.3%

100.0%Why did you choose the response in the previous question? Please choose thereason you think is “most important.”（Q3-8sq）
PossibleHigh
Expected
Respect More likely Set bytopossibility improve Econo for Mrs.
to fitnational orrecover for longer ment of mical
A'sfamily'sfacility
fully
life
QOL
dignitywish
guideline

other

Total

Japan

2.9%

38.8%

6.7%

.5%

16.7%

31.6%

.5%

2.4%

100.0%

France

5.9%

17.6%

5.9%

.0%

35.3%

29.4%

5.9%

.0%

100.0%

U.K.

.0%

14.3%

28.6%

.0%

57.1%

.0%

.0%

.0%

100.0%

Israel

.0%

8.6%

29.3%

.0%

20.7%

10.3%

24.1%

6.9%

100.0%

Australia

3.9%

7.8%

23.5%

.0%

49.0%

9.8%

2.0%

3.9%

100.0%

Netherlands

18.2%

4.5%

18.2%

.0%

31.8%

9.1%

.0%

18.2%

100.0%

Korea

1.3%

42.7%

17.3%

.0%

26.7%

10.7%

.0%

1.3%

100.0%

Czech

.0%

7.3%

41.5%

.0%

31.7%

4.9%

14.6%

.0%

100.0%

Total

2.9%

27.1%

16.7%

.2%

25.4%

19.6%

4.8%

3.3%

100.0%

30

Except for Korea, the most often given response as the best policy forhelping Mrs. A and Mr. B face death was “Changing to palliative care athome” (Q2-8, 3-9)
As a professional which of the following do you think is the “best” policy forhelping Mrs. A face death? (Q2-8)

As a professional which of the following do you think is the “best” policy forhelping Mr. B face death? (Q3-9)

31

<AT HOME : AT A FACILITY>
Japanese typically have a long waiting period before they can moveinto a “Old people‟s home” or “Hospital/ clinic” (Q2-2)
If Mrs. A was to use an institution listed below, would she need to wait before
moving in? (Q2-2) (Average value, month)Long term
Hospital/
Hospicecareclinic(institution)
hospital

AssistedlivingGroup
home

Old people’s
home

Japan

2.50

5.06

10.19

4.58

1.31

2.76

France

1.31

2.25

2.63

1.86

1.25

1.79

U.K.

2.25

2.55

1.49

1.00

1.00

0.54

Israel

8.35

11.05

6.09

1.44

2.00

1.64

Australia

1.93

3.50

1.77

1.19

1.17

0.82

Netherlands

9.50

9.25

4.59

1.97

1.13

0.54

Korea

4.50

4.00

2.33

1.50

2.32

2.71

Czech

14.03

3.00

32.35

1.31

1.33

2.03

Total

6.58

5.05

9.64

2.47

1.49

1.99

If Mr. B was to use an institution listed below, would he need to wait before
moving in? (Q3-3) (Average value, month)Long term
Hospital/
Hospicecareclinic(institution)
hospital

AssistedlivingGroup
home

Old people’s
home

Japan

4.13

4.44

8.86

5.34

3.46

3.44

France

1.29

2.75

2.6

2.09

0.67

1.95

U.K.

3.33

2.50

1.30

1.17

1.00

0.75

Israel

11.86

22.00

4.07

1.60

1.00

1.27

Australia

2.82

3.00

1.93

2.25

1.00

1.00

Netherlands

12.00

12.00

5.03

2.08

1.75

0.68

Korea

4.50

6.00

1.50

1.75

2.20

3.22

Czech

11.75

.

34.60

1.26

0.00

2.65

Total

7.09

6.77

9.77

2.73

2.34

2.16

32

Japanese responded that the suitable place for Mrs. A and Mr. B tospend their final days was “at home” but actually this period is in manycases not spent at home. The gap between the suitable place and theactual place was larger in Japan than any of the other countries in thesurvey.
Which of the following places do you think is the “best” place for Mrs. A to
spend her final days? (Q2-1) (Percentage of respondents that answered “Mrs. A's home”)

Based on your previous experiences, where do you think Mrs. A would actuallyspend her final days? (Q2-1sq) (Percentage of respondents that answered “Mrs. A's home”)

33

<Judging Terminal Phase and Use of PEG>
Many respondents in the UK, France, and Australia think that “Mr. B is in
the terminal phase” however many in Japan, Korea, Israel, the Netherlands
and Czech think that Mr. B “is not in the terminal phase”.
Do you think Mr. B is in “the terminal phase”? (Q3-1)

34

4．International comparative analysis in awareness on ideal terminal careand death (1 section)
Daisuke Watanabe
Comparative analysis by occupation using factor scores
To develop a scale for measuring ideal death and ideal end-of-life care awareness, wemade a factor analysis of respective investigative items for ideal death and ideal
end-of-life care utilizing data from the 5 countries of Japan, Korea, Israel, Australia, andCzech. We consequently extracted “Death in a short time that causes no problems” and“Prepared death surrounded by family” as latent factors for ideal death and “End-of-lifecare spending as much time as possible together” and “Short term and low cost end-of-lifecare” and “End-of-life care allowing communication” as latent factors in ideal end-of-life
care.
Next, we made a comparison (one-way analysis of variance) of average values taking
the respective factor scores for ideal death and ideal end-of-life care and using
occupations (doctors, nurses, care workers) as explanatory variables.
Table 1: One-way analysis of variance of factor scores for ideal death and ideal end-of-life
care
Ideal death
Ideal end-of-life careEnd-of-life
Prepared
care
Short term
Death in a short
End-of-life caredeathspending as
and low costtime that causes
allowingsurroundedmuch time as
end-of-life
no problems
communication
by family
possiblecare
together
Medicaldoctor (n=79)-0.21±0.99-0.05±0.77
0.09±0.77-0.24±0.91-0.04±0.85
Nurse(n=146)0.15±0.79
0.06±0.84-0.07±0.89
0.30±0.86-0.01±0.88
Direct care
worker(n=219)-0.02±0.90-0.03±0.76
0.00±0.83-0.11±0.96
0.03±0.74
F value
4.59*
0.78
0.99
11.96***
0.23* p<.05, ** p<.01, *** p<.001

Analyzing results by occupation showed a significant difference among factor scores for
ideal death per “Death in a short time causing no problems to others” and ideal end-of-lifecare in “Short term and low cost end-of-life care”. Both of these tended to be emphasized
highly by nurses but not favored at all by doctors. This allows assuming that nurses are
more prone to favor death over a short term in end-of-life care. Care workers averaged
nearly 0 in “Death in a short time causing no problems to others” and tended not to highly
emphasize “Short term and low cost end-of-life care”. Results from making a multiple
comparison of these answers by utilizing Tukey b showed that in the prior case there wasa significant difference level of 1% between nurses and doctors. Namely, nurses tended
to emphasize “Death in a short time causing no problems to others” more than doctors.
Moreover, in the latter case a significant difference between nurses, doctors and care35

workers (all on a significance level of 1%). Namely, nurses regarded “Short term and low
cost end-of-life care” as significant. This is thought due to the fact that nurses emphasize
the resultant burden and the financial situation of the patient and family.
Factor scoring by occupation and by country
Table 2: Factor score average±S.D. for ideal death/ideal end-of-life care by occupation in
Japan

Medicaldoctor (n=79)
Nurse(n=146)
Direct care
worker(n=219)Ideal death
Ideal end-of-life care
Prepared
Prepared
Death in a short
Death in a short
Death in a short
death
death
time that causes
time that causes
time that causes
surroundedsurrounded
no problems
no problems
no problems
by family
by family-0.25±0.83
0.16±0.57-0.24±0.95-0.36±1.00
0.24±0.59
0.13±0.83-0.10±0.83-0.41±0.79

0.18±0.83-0.28±1.08

0.02±0.84-0.11±0.75-0.23±0.78-0.32±0.95-0.05±0.78

Japan differed significantly from the remaining 4 other countries in its view of ideal death.
Specifically there was a large difference in views between nurses and doctors with
doctors emphasizing “prepared death surrounded by family” while nurses tended toemphasize, “death in a short time causing no problems to others”. Care workers tended
not to favor “Prepared death surrounded by family” very highly. These trends also tended
to mirror those for end-of-life care where none of the occupations emphasized“End-of-life care spending as much time together as possible” yet nurses favored “shortterm and low cost end-of-life care” but doctors to the contrary favored “end-of-life careallowing communication”.
At first glance, these results appear to contradict our first instinctive impression that
nurses emphasize the family while doctors emphasize the body. However if viewed fromthe aspect that nurses emphasize the “burden”, then one can understand that rather thanjust the body, they favor reducing the load placed on both the patient himself, and hissurroundings. The results of this current study allow understanding not only differencesamong experts in this field but also of how “quality” is viewed.

36

III. Actual status in overseas countries and analysis
1. Issues for end-of-life care (terminal care) of elderly dementia
subjects in Japan －Learning from challenges faced in Italy and Australia－(excerpt)
Yukimi Uchide
I. Introduction
National awareness of dementia among the elderly prior to the 1990‟s was that medicalcare and treatment were given in a one-sided manner. However, person centered care has
gradually seeped into the consciousness of experts in the field, and values have started toshift from care to reciprocity in that respect that there are more opportunities to care forpatients living as members of community and to mutually recognize and support the factthat individuals are irreplaceable. The idea that the end-of-life period of elderly dementia
patients is an ordinary part of life has also become widespread. This signifies that thedeath of that individual is meaningful not only to that person but also to the family, closefriends, and the community.

II. End of life care in Italy<Italian Alzheimer‟s Disease Association, Cremona palliative care research laboratory>

1. Welfare for the elderly in Italy
Italy has no public health care insurance system that functions on a nation-wide level.
Cash allotments rather than benefits are the mainly used medium for care. By the 1980‟s amonthly sum of 450.78 euros was allocated as a care provider subsidy to families as themost major step in dealing with increased number of elderly requiring care. The actual
assistance allotted varies greatly by region. According to a white paper of welfare issued in
2003, “the family has and will continue to hold an important place as a powerful cushion to
the social system and as a protective system during major events in the lifecycle such as
the birth of children, unemployment and major illness,” and the family is placed within thecare system for the elderly. However this subsidized care system centering on the family is
showing signs of strain due to women‟s advance into society and the sudden aging ofcurrent society. In particular, migrant workers began to take up care-giving jobs in the latter
half of the 1990‟s. In recent years, the mass media has taken up the problem of solitaryrddeath, and in the city of Milan for example about 1/3 of the 270,000 elderly live alone andrd

a further 1/3 of them die alone at home.
2. Work and end-of-life care by the Italian Alzheimer‟s Disease Association (AIMA)
Services (all free of charge) provided by AIMA include: a) Promote understanding offamily illness, b) Alzheimer‟s Café, c) Telephone consultations, d) Social and legal
consultants, e) Family group meetings, f) Support of volunteer groups, g) Mental healthcare support for individuals, h) Orienting manuals for care workers, i) Specialist instruction37

for paid care work helpers (many are foreign workers), j) Information campaigns (issue ofgroup bulletins), k) Providing information on illnesses and services, l) Other positive
activities (fund raising, etc.)
The Alzheimer‟s Café was founded on a hint from people in the Netherlands. It has been
operating since 2006 and plans outings where the patient and family go to movies, danceor listen to music, and play, etc. Activities are monitored by trained volunteer backed up by
psychologists and others. These activities are also carried out at the end-of-life stage.
Moreover, 10 percent of the phone consultations involved end-of-life issues. Most
numerous are inquiries about who decides matters such as use of PEG or tube feeding or
drips for fluid replacement.
3.

End-of-life care issues in Italy(1) Nation-wide citizen‟s consensus-- understanding of palliative care

Use of PEG, drips and life extending drugs in final stage care is extensive compared to
US and other European countries. One reason for this is that more than 90 percent of the
population is Roman Catholic so they have a religious tradition of respecting human life.
This requires instructing people that life-extending treatments may possibly prolong pain
and legal groundwork must also be prepared for advanced directives.
(2) Support for family nursing care
Some 85% of elderly people with dementia live at home and their families reach thepoint of exhaustion and are abandoned by society. “People with dementia don‟t wantanything and so don‟t need anything” seems to be the perception by the general public.
Needs of family care persons include the following: a)Temporary acceptance of patient at
facilities, b) Timely support, c) Useful counseling, support & information on networks, d)Care service activity and evaluations, e) Organization & training for care of the elderly, f)Alleviating the sense of family responsibility, g) Knowledge of nursing care.
(3) Measures for handling care workers from overseas
Specialists have spent a great deal of time learning palliative care but the actual caregiven in the homes is usually provided by care workers from overseas of whom most havereceived no education. Improvement of their education and compensation has now
become an urgent issue.
4.

Challenge of ideal life-end-care in Italy
At the Palliative Research Laboratory they are stating quite strongly that the doctors

must shift over from searching for scientific cures to the life ethic approach of pursuing abetter life for elderly dementia sufferers.
Taking the standpoint of the family on the other hand, the Alzheimer‟s Disease
Association emphasizes the following points. A first point is that the ideal state between
family and patient is to create an environment that can offer specialist care. The familymust become aware of the need to obtain information, and financial resources that allows
hiring a trained staff as well. A second point is that a legal groundwork must be prepared38

for utilizing the advanced directive. A third point is achieving a re-awareness of thesignificance of home care. One says, “the people in the neighborhood came by our homewhile mom was in bed and everyone did something. We were not alone. There is no public
service assistance but we realized that dying is a natural part of life”. Another comment isthat, “in Japan you can choose nursing care by the family or you can entrust it to thelomg-term care insurance system. It is really great that you can choose from these
options”.
5.

Comparisons with Italy
Both countries face the common problem of becoming aging societies with few children.

The traditional role of the family was also a common point in the past. Italy is recently
taking a new look at the role of the family, and the Japanese trend is to cover problems via
the entire region instead of leaving it to the families, assuming the breakup of the family
just as seen in its own care insurance system. A vital point for both countries is a change inattitude and doing groundbreaking work to shift from scientific cures to life ethics.
Ⅲ. End-of-life care in Australia<Results from hearings held with families, visiting nurses, gerontology physicians
and day care center directors>
1.

End-of-life care for elderly dementia patients
In 1997 a basic strategy called “aging in place” (spending one‟s elderly period in a

familiar place) was introduced. The National Palliative Care Strategy introduced by thegovernment in the year 2000, started to take shape for providing needed palliative carevarious measures were taken centering on the community. Moreover in 2004, Guidelines
for a Palliative Approach were established that were oriented towards care facilities for theelderly and regional services.
In addition, “evidence based implementation projects” are continually being carried out.
Through great amounts of studies and research these projects eliminate attempts toextend life by meaningless care of elderly patients with severe dementia, and support anindividual care approach based on alleviating the patient‟s symptoms.
2.

Advanced directive users
When first moving into a care facility for the elderly, the representative usually works

along with the facility manager to write up an “Advanced Directive (AD).” This advanced
directive may or may not have legal significance depending on the judgment of the stateand local governing bodies.
3.

Long- term care at home
Dementia care aid packages for long-term care at home are provided for severe

dementia sufferers and their families, that can offer nursing home level care at thepatient‟s home. This system provides comprehensive services in an organized approach,but the increasing cases of an elderly person caring for an elderly patient amount to agreater burden and the assistance to provide to such families is becoming a large issue.

39

4.

Collaborative approach to care
The NSW health department has issued its Guidelines for End-of-life Care and one of

the 8 principles within these guidelines is “a collaborative approach to care.”Home services that are provided in the northern district of Sydney for families of patientswith severe dementia include all types of support such as: a dementia advice center, atelephone consultation service, daycare, and respite care, etc. If in the first stage, then theguardian is given assistance with procedures and an introduction made at a family
meeting and constant collaboration is maintained including social exchange with thecommunity. The family can utilize regional-based palliative care team. Moreover, engaging
in activities deeply rooted in the patient‟s life (such as favorite cuisine, golf, or music
appreciation) can be continued each day to gently ease the decline of physical and mental
functions.
5. Comparisons with Australia
The background of care in Australia is rooted in a national consensus on end-of-life careand meticulous technical training and principles as shown in the palliative care guidelines.
In the case of Japan, the situation tends to focus only on the load imposed on the family
but there is also a need to pile up a record of home care success cases and obtain anational consensus by making successive detailed analysis.
Getting everyone to talk openly is important. When inquiring about making the
grandchildren do end-of-life care, the trend is to separate the grandchildren from thesetypes of issues. The reason for this being that death is a negative topic and something
hateful. In Japan however the custom of the entire family helping in end-of-life care is still
alive.
IV. Conclusion
1. Creating a spirit of mutual collaboration that prizes family bonds
Devoting oneself to caring for relatives can cut into your own life and privacy and blockout other relationships as well as one‟s time. This type of situation can be saved by the
relationship in which the patient and the caregiver mutually recognize each other as
human beings. Even though his bodily functions have declined, the patient can stillrecognize whether or not someone is paying attention to him/her.
2. Shifting the elderly dementia patient‟s end of life view from a negative to a
positive image
By living at home with people who can understand the patient, help the patient
remember past events, and by respecting the care workers, the specialist staff canmaintain a feeling that what they are doing is worthwhile and switch the situation over to a
positive image.
3. Education on end-of-life care”
We should work to create a trend that educates a person from childhood to allow
participating along with those close to him in the life process from birth to end-of-life care.

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2．Issues and current status of welfare for the elderly and home andinstitutional long-term care services in Taiwan (excerpt)
Mari Tsuruwaka
1.

Current status of low birth rate --rapid aging in Taiwan
As of 2009, the percentage of elderly in Taiwan was 10.63%. The average life

expectancy of males was 76.03 years and for women was 82.34 years. The total specificbirth rate was 1.03. The percentage of elderly is expected to reach 23.8% by 2030 and
36.7% by 2050. Taiwan has many elderly males due to their sudden influx after losing thecivil war in China.
2.

Living status of the elderly
In 1976 some 83.7% of the elderly lived with their children but in 2007 this rate had

decreased to 60.4%. On the other hand, those living alone or just with their spouses
increased approximately 30%
3.

National Health Insurance (NHI) system and public pension system
Taiwan‟s social security system consists of public assistance, social insurance, social

welfare, public health and hygiene, public employment, and public housing. The largest
point of difference from Japan is welfare policies for the elderly that includes policies inareas such as social assistance and a medical insurance system.
The National Health Insurance Law of 1994 provides health insurance coverage for all
citizens. The insurance cost and premium rating of the insurance premium vary with theindividual social position and 30% to 60% of the total fee is paid by the citizens, and thedifference is paid by the employer or by government subsidy. The government pays healthinsurance fees for the military, ex-military, those with low income, and 65 and older citizens
in Taipei and Kaohsiung.
A pension system covering basic living needs is limited to those who retired at
mandatory age among the military, public employees and teachers. Those working inprivate companies may receive a retirement lump sum grants after a certain amount ofyears at work but that is not enough for a stable retirement in old age. Retired elderly
persons must depend on their children and supported by them.
4.

Elderly Welfare Law
The Elderly Welfare Law was established in 1980. This law was first amended in 1997.

The legislative intent was to add the principle of protecting the rights of the elderly. It
specified the legal duty to those responsible to provide compulsory support for the elderly
and changed coverage from 70 and over, to 65 years of age and over, gave rental priority
in public-managed housing to three generation families living together, granted a living
allowance to low-income elderly persons not residing in facilities, and newly establishedprotective acts for the elderly.
Feature of these legal amendments were described as assuming family support,
stressing cash allowances, and having a lack of protective principles.

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5.

System for providing long-term care services for the elderly
Social welfare systems and medical health systems are available. The social welfare

system provided by the Ministry of the Interior delivers mainly home services and facility
services for the physically disabled and low-income elderly with taxes as the funding
source and is based on the Elderly Welfare Law and Physically Disabled Persons
Protection Law (1980). The health system provided by the Department of Health provides
home visit nursing care services based on subsidies from the NHI system. These services
can be utilized by anyone judged by a physician as needing them regardless of income
level.
Welfare policies for the elderly mainly provide, based on the Elderly Welfare Law 1)
health measures, 2) economic security allowances, 3) educational and recreational
activities, and 4) long-term care services.
1) Allows the elderly to periodically receive free medical exams from a regional
government facility based on article 20 of the Elderly Welfare Law. Whether they actually
receive the exam or not is left up to the elderly person.
2) Provides “living assistance subsidies for low income elderly persons” and covers
low-income elderly not living in public facilities. The “mid-to-low income elderly persons
statute” gives direct economic assistance to those elderly 65 years and older not living inpublic facilities in distressed circumstances or whose children cannot support them.
Allowance is 6,000 Yuan (1 Yuan = 2.8 yen) per month per person for those whose
average total family income divided by number of family members is 1.5 times or lower
than the minimum standard of living level, and 3,000 Yuan for those with incomes of 1.5
to 2.5 times that level. Those receiving this allowance numbered 156,446 people by theend of 2004.
The Elderly Agricultural Worker Welfare Statute covers elderly farm people. The“Elderly Livelihood Protection Statute” grants 3,000 Yuan per month to average income
elderly people. Approximately 690,000 people received benefits as of fiscal 2004, and thetotal amount dispensed was 24.19 billion Yuan.
3) By 2005, there were 266 “life-long learning institutions” which are equivalent to theuniversities for seniors in Japan.
4) The cash allowance grants 5,000 Yuan (per eligible person) to families as intended by
the Ministry of the Interior to foster home nursing care supplement income that was lost
due to nursing care. It covers low to middle income family care givers of whom 8,517
people received the allowance in fiscal 2004 and the total amount dispensed was 39.71
million Yuan. The actual subsidized home services provided are “home visit nursing care”,“home visit nursery”, ”home renovation” and “emergency reporting systems”. Regional
services are: “day services”, “daycare care”, “short stay” and “meal delivery services.”
Facility services include “pay nursing homes,” “special nursing home for elderly,”“recuperative health care facilities,” “elderly clinic wards” “health care facilities for the42

elderly” and “retired veterans facilities.”
6.

Home care services
The Ministry of the Interior promotes establishment of day care centers andrecommends that elderly people living alone and elderly people with working families
make use of their services during the day and at night spend time at home with theirfamilies. In terms of nursing type day care cash subsidies, the highest sum allotted to low
income elderly is 5,000 Yuan per month per person, and 3,000 Yuan for middle income
elderly, 1,500 Yuan for commuting expenses and a maximum of 90 Yuan for use of facility
equipment. Cash subsidies for meal delivery services are 50 Yuan per meal for mid to low
income elderly, and a daily amount of 100 Yuan per person is provided to meet commuting
needs for volunteers for meal delivery. To help expand private organizations that provide
community services, cash subsidies are also paid for office facilities and equipment,
specialized service expenses and office rental fees, etc. Meal service operations not only
solve food related problems by providing meals at specified locations or deliver to thehome but are also seen as venues for contact with outer society and social mixing. In fiscal
2004, a total of 22,179 people utilized this service and 1,533,203 meals were served.
7.

Facility care services
There are a total of 40 pay nursing homes, 845 special nursing homes for elderly, and

31 recuperative health care facilities. Recuperative health care facilities and pay nursing
homes comprise 54,233 beds, health care facilities for the elderly comprise 24,777 beds,
and retired veteran‟s facilities comprise 11,513 beds. Together these amount to a total of
90,513 beds. Among these, the recuperative health care facilities and pay nursing homes
are utilized by some 54,223 people for a usage rate of 72.6％ (as of Sept. 2009). The total
demand for beds by elderly in Taiwan is thought to be 70,860 so some 30% of the beds
are unused. This is said to be due to the fact that the elderly do not like staying in facilities
and prefer to live with their families. Another problem is the cost of living in such facilities
since Taiwan has no nursing-care insurance system.
9.

Conclusion --Elderly home residents,

occupational care workers

Taiwan‟s welfare policies for the elderly tend to deal with low to middle income elderly
people. All other elderly people are driven to seek family care or purchase nursing careservices out of their own pocket. Some 30% of the beds remain unused in facilities for theelderly and how to make use of them is an important issue. Most elderly people here wantto live with their families in a place they are accustomed to and so the urgent need is forcomprehensive home care rather than increasing the available facilities. Currently in thecity of Taipei, there are 11 social welfare organizations providing home care, andapproximately 2,000 people receiving services. There are approximately 128,000 homecare workers residing in Taiwan and almost all of them are employed in households. Manyof these home care workers are from Vietnam and the Philippines.

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3. Healthcare and long-term care expenditures at terminal stage(excerpt)
Tetsuo Fukawa
1. Introduction
The issue of healthcare expenditure in the period prior to death is complicated. Besides
aspects such as end-of-life care, palliative care, and tube feeding (gastric fistula), it also
involves ethical issues such as life-support treatment and death with dignity andeuthanasia, etc.
2. Healthcare and long-term care expenditures for the elderly aged 65 or over
National healthcare expenditure in Japan climbed to approximately 35 trillion yen in
fiscal 2008. Among them, healthcare expenditure for the elderly was 19 trillion yen, or 55%
of the total. In fiscal 2008, per capita healthcare expenditure for the elderly declined to
3/4ths of those in fiscal 1999, therefore so-called social hospitalization (use of hospitalbeds for non-medical reasons) should be decreased considerably (partly due to a shift tolong-term care expenditure). For the elderly (65+) as a whole, long-term care expenditure
was about one-third of healthcare expenditure. However, for the elderly aged 90 or over,long-term care expenditure was greater that healthcare expenditure.
3. Healthcare expenditure before death: Some previous results(1) Results from medical claim data for the elderly in the 1990s
Healthcare expenditure for the deceased in Japan varied greatly depending on the useof inpatient services, which turned out to be the main factor of increase in healthcare
expenditure per deceased elderly as the month of death approached.
On average, healthcare expenditure per deceased elderly for one year prior to death
was 4.3 times than annual healthcare expenditure per surviving elderly. However, theformer drastically dropped with age increase, thus the rise in healthcare expenditure at theterminal stage did not greatly affect the overall healthcare expenditure for the elderly.
This has also been reported from overseas. Setting the healthcare expenditure per
deceased elderly aged 65-69 for one year prior to death as 100%, then in the case of
deceased elderly aged 85 or over, the per capita healthcare expenditure was 50% inJapan and the Netherlands, 63% in Germany, 66% in the US, and 71% in Switzerland. It
may be a common phenomenon that healthcare expenditure per deceased elderly for one
year prior to death decreases with age increase, regardless of healthcare system for theelderly in each country.
(2) Results from outpatient medical claim data in 12 municipalities for the elderly in
National Health Insurance from April to September 1999
Healthcare expenditure per day for deceased outpatients was approximately 1.9 times
than that of whole outpatient consultations. Healthcare expenditure per day for deceased
outpatients peaked at age group 80-84, and rapidly declined afterwards, compared with
gradual decline for survivors outpatients although peak age is the same.

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4. Healthcare expenditure before death: Trial use of national database on medical
claim data in 2010
Using the national database on medical claim data, we intend to clarify the age patternof per capita healthcare expenditure, paying special attention to very old age group.
Healthcare expenditure for deceased elderly in comparison with that for surviving elderlyof same age group is also quite interesting.
5. Discussion
It is possible that a decline in the mortality rate among advanced countries in the future
is caused by postponement of cancer and circulatory diseases, not by elimination of these
diseases. Moreover, the rise in mortality rates with age increase differ by diseases, there isa greater need to analyze mortality and morbidity of the elderly according to diseases.

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4. Outlook and administrative issues on end-of-life care (excerpt)
Fumio Isobe
1. Defining end-of-life care; Focusing on terminal stage medical treatment
I n this section, the term “end-of-life care” is used basically to signify terminal stage care.
Hospitals are beyond the scope in this section.
2. Current status in Japan
1) What is currently being done
a. End-of-life care at home
Currently approximately 13% of these deaths are in the homeb. End-of-life care in facilities, etc.
Currently, approximately 3% of these deaths occur in facilities. One study shows that in2006, among special elderly nursing homes, approximately 30% died in facilities, while
44% died in hospitals. Long-term care fees were revised that same year to create“supplemental sum for intensive care” and ”supplemental sum for end-of-life care”
categories for intensive care work in special elderly nursing homes, and from here
onwards it is estimated that end-of-life care will increase in intensive care work in special
elderly nursing homes.
c. Problem of feeding tube (PEG) at home & facilities
In recent years, many elderly people are returning to homes or care facilities after
receiving PEG or tube implant surgery in hospitals. This creates a problem in terms ofwelfare for those who are unable to express their will. Moreover maintaining PEG isdeemed as medical treatment and the care staff outside the family have been restricted
to handle this task, so this create the problem that if a PEG or feeding tube was added for
end-of-life care then that patient found difficulty in returning return to his own facility.
2) Legal systema. Terminal stage medical treatment
In May 2007, the Ministry of Health, Labour and Welfare for the first time instituted“Guidelines on the Decision-Making Process for Terminal Stage Medical Treatment”.
These guidelines were meant for hospital medical care but also regarded as suitable forliving at home after hospitalization. In the opinion of physicians and others, theseguidelines are inadequate in that they do not clearly state what type of medical treatment
incurs legal liability and what you can skip and still avoid that liability in terminal stage
treatment. At incurable patients group meetings some worry that if taken too far, a doctor
can do anything as far as he just obeys the guidelines, and this might open the door tomercy killing contrary to the will of the patient.
b. Draft of outline of Basic Bill on Ending Life Support Measures in Cases of Brain Death
This outline bill was publicly announced by a Diet Member Alliance for Death with
Dignity Legislation consisting of non-partisan diet members on the same month that the46

above guidelines in a. above were issued. Its content included items such as “doctors
shall be able to shut off life support equipment if patients of 15 years of age or more
express such intent in writing and the family does not object” and “patient shall be judged
as clinically dead upon the judgment of 2 or more physicians”, etc. This is different from a.
above in that it establishes the exemption from legal liability that was inadequate in a.
above. However arguments opposing this legislation state that there is great danger of
infringement of patient rights under the current legal status which provides no guaranteesof rights to obtain proper medical care or informed consent, etc.
3. Administrative issues in Japan
1) What the government administration should do under current legislationa. End-of-life care at home
The government should start providing end-of-life care for home patients by forming“medical-care teams” as described in the guidelines whose members are mainly home
support care clinic staff, visiting nurses, visiting care workers, and care managers. This
would require thorough utilization of regional resource. First of all, the “eager and efficient
care persons” needed for end-of-life care in the home must be identified. In order toprovide end-of-life care especially to the increased numbers of people living alone athome, will the Community Comprehensive Support Centers and care managers be able
to fill in the role of someone who is capable of functioning as “eager and efficient careperson”? Also how to cover the remuneration for the care giving must be debated.
Next, required are doctors that can be dispatched from home care support clinics or
hospitals, 24 hour home visit nurses and care worker staff. Also necessary to consider is
how to form a system that gives 24 hour service anywhere and secure a fund to coverample pay for this work. This is truly a “home hospital” situation, and the municipality or
Community Comprehensive Support Centers will need to plan and delegate tasks for
end-of-life care among homes. Currently in France, Regional Medical Plannings stipulate
the number of home hospital admissions.
b. End-of-life care in care facilities, etc.
The government should also evaluate extracting subsidy funds from medical andlong-term care insurance for making Regional Support Hospitals as an end-of-life support
hospitals. Placing an End-of-life Care Guideline at social welfare facilities will lead toincreased end-of-life care in facilities, and help cut down on traffic carrying patients to thehospital. Rewarding the preparation of such guidelines and taking related action will help
roll out the system.
c. Standards for PEG (tube feeding)
The government should have the Ministry of Health, Labour and Welfare or related
academic councils create guidelines for installing PEG and standards for stopping its
usage.

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d. Promote understanding of natural deathWe must promote an understanding of natural death among medical staff including
physicians to achieve superior end-of-life care.
2) The administration‟s role in showing choices in future legislation
The administration has the role of planning a series of choices to allow the people tochoose the end-of-life treatment that they want.
a. Plans should be made for end-of-life care (home hospital) by the municipality or
Regional Comprehensive Support Centers plan and allocate require care work tocontractors. To make that happen, the most effective method will be to revise long-termcare insurance systems to allow municipalities to conclude exclusive contract with abusiness that will be exempted from Antitrust Law.
b. Legal planning for advanced directives covering medical treatment is a priority.
France, Germany and the Netherlands already have such laws. The contents of such alaw would designate procedures mainly for verifying the validity of the instructions ofpatients.
c. Next, laws to limit or stop medical treatment should be instituted. We must respect theviews and opinions that aggressive medical treatment can impose a large burden anddrastically lower the quality of his life (QOL) of the patient facing death as well as the factthat excessive life support measures can add to patient suffering and place a hugeeconomic and spiritual burden on the family.
4. Prospects
1) Legal planning for the advanced directive
Results from a survey made in March 2008 have appeared in the informal report of acommittee of the Ministry of Health, Labour and Welfare on the approach to end-of-lifecare (October 2010). In regards to establishing legislation for a Living Will some 62% of
the general public disapproves while 54% of physicians are in favor of it. Some type ofcorroborative evidence obtained from daily work tasks is required here. These opinions
must be fully absorbed before moving forward to establishing an effective law.
2) Laws to limit or stop medical treatment
More than 80% of the people in the above report felt troubled or insecure on terminal
stage medical care. The Basic Bill on Ending Life Support Measures in Cases of Brain
Death introduced as a bill sponsored by a non-partisan group of diet members is one typeof such needed draft legislation. And evaluating each content while debating on provisions
will truly prove productive for those facing death and their families.

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