Decision-Making Process Regarding the Use of Mechanical Ventilation by a Patient with Amyotrophic Lateral Sclerosis : Interaction of the Patient with Family Members and Specialists

NII-Electronic Library Service

Decision-Making

Process

Regarding

the

Use

of

Mechanical

Ventilation

by

a

Patient

with

Amyotrophic

Lateral

Sclerosis:

Interaction

of

the

Patient

with

Family

Members

and

Specialists

Ybshimi SUMIDA

NiigataUniversityFacultyDentistryDepartment of Oral Healthand Welfare

Abstract

Objective:Theobjective of thjsstudy was to examine how specialists should _provide support tbramyotrophic lateral sclcrosis (ALS)_patientsinthe_processof theirdecision-makingregarding the use of mechanicul ventilation.A case analysis was made focusedon thechangcs ina_{patient'sperception}through thc _processof herinteraction with her

farn-ilymembcrs and specialists.

Methods/ The author visited thepatient'shome rcgularly, and conducted interviewswith the patient,herfamilyand the specialistsinvolved.

Results:There were perceptual differencesregarding theuse of mcchanica] ventilation among the_paticnt,her famiLy und specialists. These differencesarose becauseof thedifferencesinthepatient's_perspectiyc,which focusedon the prescnt,and that of thc specialists, which focusedon futuredcvclopments,Problemsresulting from information_gaps wcrc resolved by ongoing _professionalinvolvementincludingthe_provisionof information,while problems arising

fromdifferentva]ues were dienculttodealwith.

Conctusion:Specialistsshould be aware of thesedifferenccswhen offering suppert. Besides_providingaccurate infor-matien, theyshould facilitateinteractionbetwccn the_patientsand familymembers, thus helpingthem to reach a con-sensus.

Keywords

AmyotrophicLateralSclcrosis,Interaction,Mechanical Nlantilation,Decisien-making

1.

Introduction

This article discussesthe interactionof a _patient

with amyotrophic lateralsclerosis

_(ALS)

with her

familyand specialists concerning herdecision-making

processregarding the use of mechanical ventilation.

ALS

is

a neurodegenerative diseaseof unknown etiol-ogy caused by _progressivedegenerationof the motor

neurons. The diseaseisusually fatalin two to four years unless mechanical ventilation isused

(Society

forPreventionand Care Management of Incurable

and ChrenicDiseases,2003,_pp.295-6).Two hundred and fiftyseven special diseasecertificates were issued

for_patientswith ALS inJapan in1974,however,the number increasedto6,646in2002

_(Society

for Preven-tionand Care Management of lncurable and Chronic

Diseases,2003,p. 446).

Since the practiceof informed consent was

proposedinthe fieldof medicine, more importance

has been _placed on supporting _patientsregarding

theirchoice of treatment methods. The causes of

ALS and itstreatment methods are stM unknown

'

and _{quadriparesis,}speech disorders,dysphagia, and

respiratory _problemsdevelopas thc disease_progresses.

However, with regard to speech disorders,

com-munication devices enablc _patientsto comrnunicate,

and syrnptoms management, such as tube feeding

for

-25-dysphagiaand artificiairespiration, help_prolongtheir

lives.In 1990the consultation and management fees

forhome ventilation were covered by the_government healthinsurance.In1992the Medical

Care

Law

was amended, and designatedthe _patient'shome as a _place

fbr_providingmedical treatment.In1994 when home-visitnursmg care _programswere expanded tothe

non-elderly _popu]ationthecare situation conceming _patients with ALS also changed. The developmentof medical science and changes inmedical systems increased_the choices conceming _treatmentmethods

(symptoms

man-agement) and the_placefbrtreatment,either at home or

hospitalfor_patientswith ALS, which required them to

havethecapacity tomake decisions.

As ALS patientsbasicallyretain their intellectua] functions,self decision-makingis_possibleforthem.

According to Kamo

(1)

adults who are capable of

making

judgments

havetheright

(2)

tomake decisions

and toreceive infbrmationnecessary forsuch decision-making concerning

(3)

what belongs to them including their

body

and _qualityof life,

(4)

as longas itdoes not harrnothers,

(5)

even ifitresults inan irrational

outcome forthe _patient

(Kamo

1996, _pp. 12-3.>. Kojima definesself determinationas making decisions

about theirown lives

(Kojima

2002, _p.210.).Deciding

on mechanical ventilation isliterallya choice of ]ifefor

patientsand a difficultone tomake. Theyfeel

ambiva-lentbetweentheirwish to liveand sustaining their lives ina state of immobility.

Many differentperspectiveshave beenproposed by _{professionals}to support ALS _patientsinmaking

the decisionregarding mechanical yentilation, but

there islittleresearch on whether the _patientsmanaged

theirdiseaseas _{professionals}hadexpected or how the patientsfeltabout theirsupport. ThisarticLe discusses

how specialists should _providesupport forALS _patients

by clarifying how such a _patient changed through

herinteractionwith herfamilyand specialists during

the _processof decidingon mechanical ventilation,

focusingon the_{perceptualgap}of the _patientand those

concerned with her regarding the use of mechanical

ventilation and thechanges inthe_{pereeptualgap}as the keywords,

The perceptualgap inthe helping_processresults

from the differencesin the standpoint of the _patient, familymembers and specialists as well as differencesin

professionalismamong specialists. Infact,_professional

differences

are importantinunderstanding the_problems

from differentangles. However, ifthe _{perceptualgap} arises when common understanding isnecessary inthe

helping

_{process,problem} solving becomes difficult.

This research studies the_{perceptua]gap}resulting from

the different_positionsof the _patient,family members,

and specialists inthe_process of the_patient's

decision-making concerning mechanical ventilation and what

triggeredthechanges intheir_perception.

1.

Issues

of decision-makingcapacity and making

choices concerning mechanical ventilation

Biestek listedthe princjpleof self-determination as one of the basicsocial work _principles

(Biestek

1957-1996, _pp. 160-89). According te Biestek, personalitydevelops and matures when _peoplemake

decisionson theirown. Howeyer, Kojima refutes that itistaken for_grantedthatself-determination means

taking responsibiiity, butthatthere are situations in

which clients are unable toassume responsibility even

ifthey wish tobecauseof inadequacy or lackof social

resources or information

(Kojima

2002,p.230).

ALS patientsbasicallyrequire 24-hourcare once

they become ventilator dependent.However, inthe

current situation inJapan,social resources are less

than sufficient for ALS _patients.There are almost no hospitalsor institutionswhich can accommodate

ventilator dependent _patientswho need long-term

hospitalization.Even if_patients at home use

long-term care insurance,medical care insurance,and allthe

services available fbrspecified diseasesand disabilities

theycan use only a fewhoursof care services adayto

substitute _theirprimarycaregivers, which imposescare

burdenson theirfamilyalmost all day.Inaddition, in

order forALS _patientstochoose mechanical ventilation their familiesare required to have the capacity to take care of the _patientat home. In_principle,thereshould

beconditions forthe

_patients,

which enable them to choose mechanical ventilation or

deny

it,However, if

theirfamiliesare incapableof _providingcare, not afew

patientsmust _giyeup using mechanical ventilation.

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Family members must _get up two to fivetimes during the night to suck in_phlegm inaddition tothe daytime,They cannot sleep through the njght, and ac-cumulate fatiguefromcare _giving.Thiscauses _patients

to feelambivalent because they feelthattheirneed

forcare might change _theirfamilymembers' lives, while atthe same time they _havea desiretolive. Self-determinationunder such circumstances isnot really

self-determination as the _{patientisdependent}on the

famity'scapacity _toprovidecare.

2. Interactioninthe

_process

ofdecision-making concerning _mechanical ventilation

Inprinciple,selfdecision-makingisbasedon the patient'sautonomy, butvarious value orientations of the peoplewhom _patientsinteractwith and social values

infiuencetheirdecision-making.There are reports that when ALS _patientsmake decisionsregarding medical

treatment_preferencesseveral factorsaffect the _process:

provision of information

(Young

1994;Moss _1993;

Mark 1996), _physician'sattitude

(Ybung

1994;Albert

1999; Moss !993), family

_(Ybung

1994;Moss t993; Mark 1996),attachment to life

(Albert

1999),ability

tocontrol discontinuationof ventilation

(YOung

1994;

Mark 1996),costs

(Moss,1993),

and insurance

cover-age

(Albert

1999;Moss 1993).

Accurate information isessential when _patients make decisionsabout treatment _preferences. There

are two kinds of informationconcerning medical

treatment and _patients'lifewith the illness.

Physi-cians _playan importantrole for_patientsto obtain

medical information,and theirattitudes influencethe patient'sdecision-makingAccordingto the treatment

guidelinesof the Japanese Society of Neurology

(Japanese

Societyof Neurology,2002) _physicians

must _{give patients}both _positive and negatiye

inforrnationconcerning mechanica] ventilation and

giye explanations without imposingtheirown values. "Physicians

who had a _{positivepersonal} attitude

toward home ventilation and remained neutral intheir presentationof ithad a higher_percentageof _patients on home ventilation"

(Moss

1993).Tateiwastates that

the basicstance of society should support _patientsto sustain their livesand that_physiciansshould not take

aneutral _positionbut_{providepatients}with a structure which enables them to live,while _givingthem the

freedomto reject it

(Tateiwa

2003, _pp.33-6).

Timing isalso

important

concerning the _giving

of inforrnation."Physicians

said thatitwas bestto

discussthe option of home ventilation soon after the

diagnosis

ofALS"

(Moss

1993)."Patient

preferences

may change over time,and clinical education efforts are required throughout the course of disease

(Albcrt

l999).

Besidesinformation,familyand social yalues are

influencingfactors.A family's way of thinking and

theirrelationship with the _patientaffect the _patient both_positively and adversely. Many _patients with

ALS hesitate to depend on mechanical ventilation

because of burdeningtheirfamilymembers, butin some cases they _decidetouse itbecause they feel

they are needed by their family.Japanese social values do not approve assisted suicide or stopping

mechanical ventilation even if_patientswish it.Since

they cannot be incontrol of stopping mechanical ventilation they have no choice to_giveita try.This

isthe main reason why _patientshesitateto decide on

home ventilation.

As faras social factorsare concerned, costs and

insurancesystems influence_theprocessof the_patient's decision-making.Inthe _{UnitedStates,}"In

general,

pa-tients inour study had more comprehensive insurance coverage and significantly higherincomes than does

average American"

(Moss

_{1993).InJapan,}as

mcchani-cal ventilation iscovered

by

_publichealthinsurance

and a_policyfordeveloping home medical care services

hasbeen_promoted, the number of _patientson home ventilation has beenincreasing

(Sumida

2002).

How-ever, thereare _gapsbetweenmunicipalities becauseof

thediffk)rentattitudes of _{physicianstowards} mechanical ventilation as well as the self-help _group activities in

each area

(Shimizu

2001).

The levelof a _patient'sattachment to lifeisalse an

influencingfactor.`'Patients who stated thatthey had

a strong will tolive,had something to lookforward toeach day,continued to looktothefuture,ete,,were

more likelytofavortracheostomy and PEG _placement"

(Albert

1999).

Decisionson how _patients liveshould be made

based on theirinitiative,but are often influenced by their interactionwith their families and specialists.

Socialvalues and institutionalfactorsalso influencethe

process.Thisstudy focusesmainly on the interaction

among the _patient,herfamilyand specialists.

11.

Methods

Surveysby interviewsnormally focuson the _past

feelingsof _patients.However,the datadoesnot

neces-sarily reflect _pastfeelingsbutmay be affected by pres-ent feelings.Thisresearch ischaracterized byitsfocus on the _presentfeelingsof the _patient,which arise from

physical changes as well as changes inthe _patient's environment and discussesthe _{patient'spsychological}

changes by continuing interviewsconcerning her

presentfeelings.Secondly,interviewswere not carried out with the _patientonly, butalso with herfamilyand

specialists. Whenever the _physical and environmental conditions of the_patientchanged, attention was _given

toherthoughts and feelings,herfamilyand specialists, whether the support was _providedas the _patienthad

wished and whether thesupport _providedbyspecialists

was effective were reviewed frem the _perspectiveef

the _{perceptualgap}betweenthe _patientand specialists,

Thirdly,intheinterim_processof analysis the_patient

and herfamilywere asked to _provide input,thus re-viewing the support fromthe _perspectiveof the _patient

herself.Withregard tothechoice of a candidate fbrthis

research, takingintoconsideration thecharacteristics of

theresearch, the_patient,who cou]d cooperate with this

research fromthetime of beinginfbrmedof the disease

not long before,and herfamily were asked to cooperate

with thisresearch.

Ms.A

(in

her60s)liveswith herhusband,daughter

and thedaughters'chiLd. The familyruns a shop from their home, and Ms. A didmost of thehousework and

took care of the shop, There are two more daughters who havetheirown families.Ms A became aware of

hersymptoms in1998,and visited a number of

hospi-talsuntil she was diagnosedas suffering fromALS at

thedepartmentofneurology atHospitalA inMay 200i.

However, she changed hospitals

because

she lost

con-fidenceinherdoctor.InJuly2002,she was admitted

toHospitalB formedical examinations, and herchief

physicianpLanneda visit by herto a non-ventilator

dependentALS _patientwhile she was inhospital.In

ad-dition,heelicited PEG and tracheostomy since bulbar

palsywas _progressingmore than _{quadriplegia.}The patientrejected bothof them, butdecidedtohavePEG

at thestrong request of herdaughter.Atthe time of her

dischargefromthehospitala network meeting was held

by the staff from a specialty hospital,an Intractable

DiseasesInformationCenter,and a healthcenter, and

they_plannedfbrhertolivewith ALS at home. At the

end of 2002, interventionswere begun to elicit her

decision-makingregarding mechanical ventilation. The

fo11owingintervention_planswere made: home visit by

anurse fromtheIntractableDiseaseslnformation Cen-tertoconfirm herand herfamily's_preferences;visitto

aventilator dependent_patientwith ALS; and admission

tohospitaland confirmation of her_preferencesby her chiefphysician.

For thisresearch, the author visited the_patient's home regularly tointerviewthe_patient,herfamilyand specialists. SinceOctober2002,the author made visits once or twice a month, asking herand herfamilyif there were any difficultiesor changes, and made field

notes followingeach visit,InJanuary2003,

special-ists_plannedinterventionsregarding her_preferences

concerning the use of mechanical ventilation.

Aceord-ingly,semi-structured interviewswere eonducted twice

forthe _patientbothbeforeand after the intervention

and forthe family after the intervention.Regular

visitstothe_patient'shome were continued after these

semi-structured interviews.Inaddition, inorder to

compare the _perceptionsof the _patientand herfamily

by identifyinghow _{professjonals}were involvedand

from what _{perspectives,}interviewswere conducted with herchief _physicianat the specialty hospital,a

nurse at the IntractableDiseasesInfbrmationCenter'),

a visiting nurse, and a healthnurse

(Fig.

1).While the

patientwas hospitalizedthe author attended a meeting of the _physicianand herfamilywith _permission from

the_patient,herfamilyand herchief _physician,At the beginning,the author visited the_patientwith thenurse

-28-NII-Electronic Library Service

from

the lntractableDiseasesInformation Center,but

after the author made an official request tovisit the

patientforresearch, they visited the_patientseparately todistinguishthe visits regarding research and care. Interviews were recorded with consent from _the

persons who cooperated inthe research and a verbatim record was made. The _patientanswered _questionsin writing and the author recorded _partof the answers

while reading them aloud. The author, _the nurse from

the IntractableDiseases Inforrnation Center,and a university _professoranalyzed the _{transcript,identified}

the_problemsand discussedwhat kindof support the

patient

wouLd need. The dataconcerning the _patient,

herfamilyand specialists was organized in chrono]ogi-cal order and _puttogether toexamine the _perceptual

gap among the_patient,herfamilyand specialists and

analyzed how _theirinteraction_{changed thegap.}

Per-mission concerning the sharing of dataamong theteam

members was also obtained fromthosewho cooperated

intheresearch. The nurse from the IntractablcDiseases

Information

Center

continued heractual interventions.

We analyzed the datausing the _grounded theory

approach. Grounded theoriescreate concepts by

mak-ingcompEll:isons of multiple data.

Since

_thisresearch analyzed thedataof several _personswho were involved

with a single case thisisnot exactly a _groundedtheory.

However, _groundedtheoryfocuseson the _process and

interactioninthe_processof bui]dingtheory. Sincethis

research aimed todiscussthechanges intheinteraction

among the _patient,her family and spccialists, the

analysis using _grounded theoryseems releyant.

AccordingtoStrauss"to bring

proccssintoanalysis

isan essential featureof a _grounded theory analysis"

(Anselm

L. Straussand JulietCorbin 1990-l999,

p.157);"By

process we mean the linkingof sequences of actionfinteraction as they _pertaintothemanagement oL control over, or responsc _to,a _phenomenon. This linkingof sequences isaccomplished by noting;

(a)

the change inconditions influencingactionAnteraction over time;(b)theactionlinteractional response tothat

change;

(c)

theconsequences thatresult from that

ac-tionfinteractionalresponse; and finallyby

(d)

describing

how those consequences becorne_partof the conditions

influencing the next actionlinteractional sequence."

(Anselm

L. Strauss and Ju]ictCorbin 1990-1999,

p.143).Inthe revised M-GM

_proposed

by Kinoshita he doesnot fragmentdatabutemphasizes the importance

of understanding the context and examines the_person's

perception,action and cmotions reflected inthedataas well as related factorsand conditions

(Kinoshita

2003,

p.158).

Thisresearch examines the _processof changes in

the_{paticnt'spsycho]ogy}followingthe course of time

fromthe onset of herdisease,and itsdiagnosis_toher

decision-making regarding _preferencesconcerning mechanical venti]ation and itisconsidered that

evuluat-ingtheeffectiveness _of

_professional

support fromthe

viewpoint of the _patientis_possibleby investigating

whether the outcomes

(changes

inthe _patientand her

family)havebeen obtained as spccialists _planncd.as a result of thechanges in_theconditions _produced bythe

support of specialists.

Inpublicizing thc dataanalysis, the contents were confirmed and approved bythe_patientand her family.

111.

Results

Four categories were identifiedas thecause of the perceptualgapinthe_processof decision-making by_the

paticntregarding theuse of mechanical ventilation. As

faras herrelationships with specialists are concerned, there was a _gap between _the informationwhich the

patientand her family desiredand theinformation

provided by specialists. As for the family,'therewas no sharing of theissuesby the familymembers. There

was also a

_perceptual

_gap between the _patientand her

daughtersarising from theirmother's _perceptionof her

disability,which she didnot want to expose to other

people.In addition, thcrewas a _{pcrceptualgap}among

thethree_parties;the_patient,daughtersand speciulists,

interms of their_perspectivesconcerning the _present

and future.The

fo1]owing

isa dctaileddiscussionof the

interaction among _thepaticnt,herfamily_{and specialists}

in

thesefourcategories.

-29-1. Informationdesired by the _patientlherfamiiy and jnformation

_provided

byspecialists

Three yearselapsed until Ms. A was diagnosed as suffering from ALS since she began to feelthat

something was wrong with hertongue,The _perceptua]

gap duringthis _period between the _patientand her

familywas that,while the_patientwas seriously worried

about thesymptom, herfamilydidnot takeitseriously.

InJanuary2001 she saw a neurologist at Hospjta]A

and was hospitalizedinMay formedical examinations.

Her family,who had not taken itvery seriously, was

totally_perplexedwhen the _patientwas unexpected]y

diagnosedas suffering froman incurableditiease.They were even more confused becauseoftheway the

physi-cian infonmedthe _patientof the disease.Inspite of the

serious matter of lifeor deathforthe

_patient,

her

physi-cian _gave her a

brief

one-sided businesslikenotice,

while ignoringherfamily'sfeelings.Furthermore,the providedinfbrmationwas insufficient,with no specific

detailedexplanation about mechanical ventilation. He only mentioned thathedidnot recommend itbecauseit

involvedmajor burdens.

The patient'sdaughtersgatheredinformationfrom theInternetbecausethey hadno knowledge about the diseaseor the lifeof ventilator-supported _patients.They

learnedfrom the Internetabout theapproach toinfbrm patientsof the diseasestep-by-step and asked the physician tofollowthestep fortheirmother. However, the _physicianonly offered a choice of either inforrning

herof the

diagnosis

or not. He didnot _give a detailed

explanation toMs. A,Afterall, herdaughters explained

to their mother about the diseaseand mechanical

venti]ator support. Almostno informationwas _provided

by the _physicianeither when Ms. A went to see him

foran examination as an outpatient. Because of the

gap betweentheinformatien providedbythe _physician

and the informationwhich the_ptitientand herfamily wanted, they losttrustinthe physician and began to

look fora _goodhospital.They wanted to finda hospital which would _providegood emotional care

in

helping

Ms.

A

decide

whether touse a mechanical ventilator or

not.

Followingtheirsearch thefamilymoved Ms. A to HospitalB,which hada _goodreputation, Thishospital

providedmedical informationaccording tothe_patient's

con-ditionas well as informationon livingwith ALS .When

Ms. A was hospitalizedfor exarninations at Hospital B

hernew _physicianfbund_theneed of ventilatory support

forherinthenear futurebecauseof the _progression

of bu]bar_palsy.He firstconfirmed thefamily's

prefer-ences concerning theuse of mechanical ventilation and

gaveadetailedexplanation tothem and the_patient.The physicianmentioned that he had explained brieflyto

Ms.A about mechanical ventilation and thatherinitial

response was "I do

not want to live

_(with

ventilatory

support)" and "I

can finishnow."

Ms. A'schief

_physician

at HospitalB arranged a

visit with an ALS _patientforMs. A, her husband and

daughtersto_providethem with informationon living with ALS. The ALS _patienthad bronchotomy but refused mechanical ventilatory support, The _patient's

fourlimbs were mostly _paralyzedand needed total

care. Her husband, who was taking care of hiswife, said inher_presence"I

cannot sleep at al1."This _gaye

Ms.A'shusbandan impressionthatthecare would be a

heavyburden.The nurse fromthe IntractableDiseases InformationCentersaid thatMs.A'shusband_probably

had an image of home ventilation as equal toattending

toal1her_personalneeds and thathewould not beable

tedo it.One of thedaughtersliyingseparately from

their_parentstook _positivelywhat the husband of the patienttheyvisited said. Shefbunditnecessary tohave

a relationship inwhich caregivers can feelfreetosay

anything and accordingly thatthe_patient

does

not feel

hurtby that.Similarly,regarding theinformation on

the lifeof the _patientwith ALS they visited, Ms. A's

husbandhadan impressionof_providingcare as a heavy

burden, while hisdaughters had a strong impressionof

thefamilywhose relationships were so open thatfamily members could say anything toeach other. Thus, there

was agap intheway they_processedthesame

infbrma-tion,

When Ms. A was discharged from Hospital B a

framework which would make ongoing care _possible

both at the speciaLty hospitaland herhome was structured. The informationobtained bythe nurse from

theIntractableDiseasesCenter,the visiting nurse and

the healthnurse duringtheirvisittothe_patientat home

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was deliveredto the _patient'schief _physicianat the

specialty hospital,and thehospitalinherneighborhood and the specialty hospitalwere collaborating with each other todealwith emergencies. The nurse from _the

In-tractable Diseases _Centerwas working closely with the patlent'schief _physicianat the specialty hospitaland its ward nurse and shared infbrmationalso with home-care

service _providers

(Fig.

1). .- -'.---..---L.----..---'1'',1lt,! t. Nursein Charge of

"patlent

IntractableDiseasesInformationCenter

N

"

Jxf

]i}xfF

SpecialtyHospital

o

m

VisitingNurse

)NNX

Figure1SocialNetworkaround Ms.A 2. Sharingofthe

issue

bythefamily:interventions

in

theproces$of self decision-making_forhome

ventilation

Ms. A,who was running a shop with herhusband,

feltuneasy with herfamilywhen she was not able to

work any longer.Shebegan to sleep ina separate room

fromherhusbandbecauseshe didnot want todisturb him when he was tired from the day'swork. During

that_periodherbulbar_{palsyprogressed,}making verbal communication almost impossible,and _there was a

dangerof choking with _phlegm stuck inthe throat. Because herconsideration for_the familymight lead

to an emergency the visiting nurse urged the couple to

sleep within an area inwhich she could reach out her arm to_giveherhusbandasignal ifan emergency arose

likechoking with _phlegm. The nurse also toldMs. A thatintheevent that aworst situation occurred because

she was not able towake him up, hewould bethe one

who suffered remorse,

Laterwhen Ms. A's swallowing functionbegan to

decline,an accident happened.Her tablets_gotstuck in

herthroat.The visiting nurse asked Ms.A'schief physi-cian atthespecialty hospitaltoconfirm her_preferences

conceming the use of home ventilation topreparefor

emergencies. SinceMs. A's hospitalizationhad been plannedtochange the _gastriccannula herchief

physi-

cian at HospitalB decidedto take the time to discuss

the matter with Ms, A whi]e she was hospitalized.

In order to _provideher with information regarding the ventilator dependent ]ifehe arranged a visit _toa ventilatory supported _patientwith ALS beforeMs, A

was hospitalized,

During her firsthospitalizationat HospitalB when she was _given an explanation abeut mechanical yentilation, she revealed her_preferencenot touse itfor

the firsttime.Her daughterstoldtheirmother thatthey wanted hertouse it,butshe refused. Sincethen Ms.

A and herfamilystopped ta]king about it.Forsome

time,after she was discharged

from

the

hospital,

the

topic was taboo forthe family,However, due tothe in-terventionsmade bythe specialists, the_patientand her

familybegan tothink individuallyabout mechanical

ventilatory support, butdidnot share the issueamong

themselves, Ms. A

did

not confide herworry tothem

either.

The nurse fromtheIntractableDiseasesInformation Center,inspiredby the visiting nurse and the interim

analysis of thisresearch, begantomake interventionsto

helpthe_patient make herown decision.To begin with,

she confirmed with Ms.A and herfamilyattheirhome

concerning her_preferenceswith respect tomechanical

ventilation. Her daughterswanted theirmother touse

itand were _prepared to support heronce she decidedto

doso.

When thespecialists began to beinvolvedinher decisien-making_processMs.A'shusbandshowed more

interestinthe non-use of a ventilator. He asked the following_questionstothe author infrontof hiswife: "I

want tohearwhat thecaregiver of a _patientwith no

venti]atory support hastosay" and "Would

she suffer

more when she isdyingifshe was not supported bythc

ventilator?" When herhusbandwas not with herMs. A said, "My _{husband does}

not want me to use a

ventila-tor."However,herhusbandsaid when hewas not with

her"Maybe,

itwould bebestfbrhertouse it."

Her husband, who had a strong impressionof

heavy care burdenswhen he and hisfamily visited a

patientwith ALS forthe firsttime,was not _positive about home ventilation

because

hethought that,based

on her_personality,hiswife would not need it.He also

said at the beginning that hedid not know much about ventilators. However, basically,hedidnot show much

interestin_gettinginformationsince hedidnot have much time toread allthematerials hisdaughters_gave

him.Hisknowledge about thediseaseand care was

biased.Therewas a _gapinhis_perceptionof thedisease

with that of hisfamily,and hehadlittleinterestinit.

The second _patientwith ALS, who Ms. A and her

familyvisited, originally didnot want touse mechani-calventilation, butwas _persuadedtodoso byher

fam-ily.When Ms.A and herfamilyvisited the first_patient

beforethis_patient,Ms. A'shusbandhada strong image

ef

heavy

care burdens.Therefore,an ALS _patient who

stM had some mobility was chosen for their second

visit.The caregiver ofthis_patientsaid toMs.A and her

familythatitwas _goodthatshe decidedtouse a

yen-tilator,and the_patientgave a smile. Ms.A feltthatthe caregiver's attitude must bea bigrelief forthe patient.

As Ms. A's husband's image of ventilatory-life changed

through hisobservation thatthe ventilatory-supported

patientseemed tobemoving forwardwith enthusiasm and thatherfacialexpression lookedbrighterthan the patientwithout such support, hebeganto thinkthathe

would regret itifhe didnot tethiswife use it.

Afterthe visit tothe _patientwith ALS, Ms. A's

husbandasked hiswife ifshe wanted touse mechanical

ventilation, butitwas a one-sided _question fromhim.

As a resu]t, there was no clear response from her.

However, when herhusband saw a mechanical

ventila-torforthe firsttime hewas encouraged by the nurse

fromthe IntractableDiseasesInfbrmationCentertoask

a _question,and his_question changed to a more specific

one about her actual ventilator dependent life.The nurse frorn_theCenterasked one of her daughtersifshe

had ever imaginedhermother's ventilator dependent

life,after which thedaughteractually beganto have a

clearer imageof the _placement of hermother's bedand

furniture.

Ms.A said she

had

not

discussed

home

ven-tilationwith herfo11owingtheir visit to the

ventilatory-supported _patientbutsaid thatshe hadheardfromher

husband that theirdaughterswere talkingabout buying acar which could accommodate herwheel chair.

When the specialists began tobe involvedwith the _processof Ms. A's decision-makingone of her

-32-NII-Electronic Library Service

daughters,who was livingaway from home, encour-aged hermother toexpress her_preferences regarding

home yentilation. When the familyvisited the first patientwith ALS, the daughterfeltthat herfamily

should shure the issueamong themselves and thought

that the topic shou]d not bespecial so thatthey could

talkfreelyabout it.When she yisited her_parentsshe asked Ms. A about home yentilation while they were carrying on an ordinary conversation. At that time the _questionwas _posedonly fromherside, and there

was no response fromMs.A.However, this ledherto

express her_preferencestoherdaughterwho livedwith

her:"When

she

(daughter

livingseparately) asked me about the ventilator Iwas not able _toanswer _properly,

butIwant to live."Actually,Ms. A decidedtouse

me-chanical vcntilation when _thespecialists begantomake

interventionsand her _physicalconditions were not as

good as they were beforethefamilyvisited thesecond

ALS _patient.Afterheryisit tothe second _patientshe

said, "That

was what Ihadimagined.Nothing changed

(in

termsof herfeelings)i'

During her second hospitalization her chief

physician at HospitalB met with Ms. A toconfirm her

preferences

concerning mechanical ventilation. During

the meeting Ms. A said, "I

want touse the ventilator

as ]ongas Ican remain mobilej' Her

feelings

changed

fromthefirsttime she expressed her_preferences,Since Ms.A'sbulbar_paralysiswas _progressingmore rapidly

than that of her four limbs itwas _quitelikely_thatshe would use the ventilator while she remained mobile.

However, the_questionremained as towhat should be

donelaterwhen herfourlimbsbecame immobile. Ms. A said the _possibilityof using the ventilator would be

fifty_percentifshe became immobile.

Atthemeeting with the specialists and the family,

they triedto share Ms. A's_preferences. However, duringthe interviewat a laterdate itwas found _that

Ms. A'sdaughtersand her

husband

didnot confirm

her_preferencesdirectlywith her.Also,after the

meet-ing,the nurse from _the Intractable_{Diseases Center} received _the informationfrem a ward nurse thatMs.

A was doubtfu1regarding what herfamilyhad said. In

order to coordinate with her family,the nurse fromthe Centerobtained _permissionfrom Ms. A and confirmed

with herfamily concerning their_preferencesat home.

Her husband said "I

would regret itifmy wife died without mechanical ventilation, so Iwant herto use

it."Herdaughterwho livedwith _them said, "I

want her to continue _tolive"becauseshe feltlonelywhen her mother was inhospital.The nurse fromthe Center told

Ms. A thatshe was needed byherfamily.Ms. A held the nurse's hands and cried.

3. Perceptionofdisability

Ms. A'sperceptionof herdisability,which she did

not want exposed to other _people, had a major impact on herunderstanding of the disease,and herhusband

had a similar _perception.SinceMs.A fbunditdifficult

tocommunicate with other _peopleshe hatedtoexpose

herselfto them and didnot want tobetalkedabout. As

a rcsult, she began towithdraw herse]fand said, "If _I must d¢pendon a mechanical yentilator Iwant to _goto a_placethatnobody willknow" and also said "I

want to

die

_(in

obscurity) ]ikean elephant." Her daughters felt

ambivalent becausethey wished _theirmother to live longerand at thesame time were uncertain whether she would be truly happy todependon ventilatory support,

givenherperceptionof disabilityas a disgraceas well as herfeelingsabout continuing to 1ivcwhile remaining

immobile.They ]cftthe decisionto theirmother and

didnot _pushhertomake herown decisionconcerning

medical _procedures,considering thatshe would not be able tomanage the situation unless she had a wM _to

liveand thatthey would accept itifshe decided against

theuse of mechanical ventilation.

There was a _gap inthe _perceptionof disability

betweenMs. A and herdaughters.Ms._A didnot want

toexpose herselfina wheelchair toother _people.while

her daughterswanted herto _go out even with

ventila-torysupport. Herdaughtersulso wantcd hertocontinue

tohave contact with thecommunity and wanted her

neighbors to helpherwhen she was on mechanical

ven-tilation.They thought unless she could live_peacefully surrounded by herneighbors her ventilator dependent

lifewouLd bcdepressing.Theywere anxious about their

mother who could not beopen about herself.When the

whole familydiscussedmechanical ventilatory support

hcrdaughterstoldtheirmothcr that they were womied

-33-about herusing theventilator, while beingunwilling to

expose herselftoother _people.The daughterwho lived separately said to hermother as she was leavingfor another room while herhusbandwas visiting thehouse,

"There's

no meaning inusing the yentilator if_you do

not findthe

joy

of watching _{your grandchild} running

around the room while _you are lyinginbed.Thatwill make _youfeelworse." However,Ms.A didnot respond

toherdaughter,and itending up as a one-way

com-munication. The nurse from theIntractableDiseases Centerfeltthe distancebetweenMs.A and herfamily.

When Ms. A and her familyvisited the second

patientwith thesame diseaseherhusbandsaidhonestly

tothecaregiver of the _patientthathedidnot want to expose hiswife's disabilitytoother _people.The _patient' s caregiver said that nothing would beginunless they accepted the reality. The nurse from the Intractable DiseasesCenterfeltthatthecaregiver made a differ-ence forMs. A and herhusband,who didnot want

the disabilitytobeexposed. The caregiver's comment

triggered change inMs.A'shusband's_perception.Later

hesaid: L`I

would beopen about thesituation ifmy wife

becamebedridden"and "1

won't beable tomanage this

unless Iletitallout intotheopen ."

Accordingtothe visiting nurse, the facial expres-sion of the daughterlivingwith her_parentslooked

gloomy when thenurse began visiting the familyand she would reconfirm several things with the nurse

concerning the medicine _prescribedto hermother, but after the meeting herfacetook on a brightlook and she

no longerreconfirmed about the medicine. According

tothe healthnurse, Ms. A used toexpress herselfas a source of troub]e forherfamilyand didnot express

herwish to live,butafterthe meeting she beganto say she wanted to live.Early on, Ms. A'shusbanddidnot

appear himselfeven ifhe _passedthe room where the

healthnurse was visiting hiswife, butafter Ms. A's second hospitalization,hechanged and spoke tothe healthnurse asking, "How are things?"

Her husband used tosay, "I

don'tthink my wife will use ventilation;' buthisattitude was differentafter

the meeting when hiswife was hospitalized forthe second time.He said: "I

would regret itifshe didnot

use a ventilator;' and "Nobody

wants todie."However,

hisdaughtersfeltthattheirfatherhad said hewanted

hiswife to use mechanical ventilation becausehewas overwhelmed by hisemotions, while they were still ambivalent about the use of yentilation becauseof their

mother 's

perceptionof disability.

4. A

_perspective

focusing on the _present and a

perspective

focusing

on the

future

When Ms. A entered HospitalB forexaminations

thefirsttime,she was recommended byherchief

physi-cian tohave tracheostomy and PEG, butshe refused

to have bothof them. Her familywas still unable

to make their finaldecision concerning mechanical

venti]ation, however,as theysaw herbecoming physi-cally weak and losingweight, thedaughterssuggested

PEG, expecting hertomaintain herenergy byfeeding

nutrition intothe stomach. Thus,they encouraged her

tomake a decision regarding the medical treatment

procedures.However, they _didnot _pushherto make a

decisionregarding _theuse of mechanical venti]ation as

she refused touse it.RightafterMs.A begantoreceive

home care she and herfamilydidnot touch upon me-chanical ventilation. Since she was able to speak and to write she was _givenan explanation about an apparatus

forcemmunication, butshe didnot _practiceusing a

personalcomputer.

The visiting nurse assumed thattherewas another

barriertotackle concerning the use of home ventilation,

Shethought itwould beimpossibleforMs.A toaccept

herdisabi]itybefbreshe actually facedthereality ofher situation. She considered thatMs. A would overcome the barrierby facingthe reality, and also thatitwas

important forthe familyto wish fbrherto survive by

allmeans and thattheir

feelings

must synchronize with

herwish tolivewith herfamily.

IV.

Discussion

1. Issues concerning interactionamong famjly

members

Ms. A'sdaughtersexpressed their willingness

te support theirmother inthe event she chose home ventilation. However, she hadnot beenable toexpress

-34-NII-Electronic Library Service

herwish to

live.

Itissaid thatfamiliesand social va]ues affect the

patients'decision-makingregarding the use of

mechani-cal ventilation. The _primary issueforthefamilyinthis research was thatthe family members didnot share the problems resulting fromthe_patient'sillnesswith each

other. Despitethe family'scritical situation Ms. A had

not expressed what she hadinmind toherfamily.Her daughterwho livedseparately from her_parentsfeltthat unless the familymembers could say openly to each

other what they thought,they would not beable toface thiskindof difficultyand she wanted her_parentsto

beopen with each other. She wanted to builda family

relationship, which enabled them totalkabout thiskind

of _problemintheirdailyconversations.

The second issuearose from the couple's percep-tion of disability.Both husbandand wife hada strong

feelingthatthey didnot want theirneighbors toknow about herillness.Ms. A said she wanted to

die

(in

obscurity) likean elephant. They were sti]1 influenced

bytheold social values that_prevailedinthedayswhen

personswith disabilitieswere not able to_goout of the houseoftheir own freewill.

The daughtersleftthe decisiontotheirmother

because they were uncertain whether she would be

happy touse mechanical ventilation considering her

perception

of disabilityand because she didnot want

to be exposed to other _people'seyes. Ms. A at first

refused to have PEG butfinallyagreed tohave it with herdaughters'encouragement. However, there was no _pushbyherdaughtersabout her_preferences

concerning mechanical ventilation, Itisoften difficult to make a decisionwithout a _pushbythefamily.as the patientmust depend on hisfherfamily'scare to live with mechanical ventilatory support. Social values

which impose responsibility on the _patientfor_their

selfdecision-rnakingaffect the fami]y,Inthisregard,

Ms. A'sdaughtersmight

feel

thatthey could not take fu11responsibility forthe _possibilitythattheirmother

might regret herchoice regarding home ventilation.

Furtherrnore,herhusbanddidnot _push hertochoose it either. However,not a few _patientshave chosen home ventilation becausetheirspouses took theillness

seri-ously and assumed theinitiative,saying, "This istough

butlet'swork together;'and, "I

want _you tolive."Ms. A'shusband thought initialLythathiswife didnot want

touse a ventilator, and hiswife, sensing his

feeling,

thoughtthathedidnot want her touse it.

One of thekeyelements infacilitatingself

decision-making issaid to bethe family.Ms.A'sfamilystrongly

wished

her

_tolive.However, since her_perception

of disabilityand not wanting _tobeexposed to other

people'seyes didnot change, herdaughters'ambivalent

feelingsremained unchanged.

2. Interventionsby specialists concerning

mation

Itissaid that_physiciansshould _gjvepatients

medi-cal informationina neutral and fairmanner including

themerits and demeritsof using mechanical ventilation

instages as early as _possible.Itisalso said thatthey

need to explain to the _{patientsthatthe} care wilL be

provided en a continuing basis,and thatdependingon

their _preferencesan explanation rcgarding _palliative

care willbenecessary. Ongoingeducation isnecessary

because_patientswaver emotionally.

The physicianat Hospital A expressed hisopinion that he didnot recommend mechanical ventilation

befbre_givinga detai]edexplanation of ittothe_patient.

There was a bigdit'ferencebetween hisexplanation

and the informationthe_patientand her

family

wanted.

The _physician'sattitude aroused the family's mistrust

inhim.Afterthe _patient and herfamilyreceived an

explanation at Hospital A, her family asked forrnore

informationabout the illnessand other information

which would helpthem to havea clear _pictureof her

lifeafter she was _puton a mechanical ventilator and

also asked forongoing care. The _physician'sattitude in

givingmedical informationand theamount

ofinfbrrna-tion_providedwere very differentbetweenhospitalsA

and B.Hospita]B arranged a yisit with another _patient with the same diseaseforthe _purposeof _providing

informationabout the _{patient'slife}athome, and when

the_patientwas _goingtobedischarged_theyorganized a

social network or ongoing home care with the specialty

hospitaland the IntractableDiseases Information Center.Itissajd that an explanation concerning pallia-tivecare

is

also necessary inthissituation, butinthese

hospitalsthere was littleinformationon _palliativecare

forthe_patientswho donot ehoose mechanical ventila-tion, Ms. A'shusbandasked the author about deathin

the event hiswife didnot choose mechanical

ventila-tion.Also,hewanted tohearfromthe caregiver of the

non-ventilatory dependent_patientabout hisfeelings.

Itseems necessary to_giveinformationconcerning the

merits and demeritsof using mechanical ventilation as well as itsnon-use fromthe_perspectiveof the _patient's

family.Particularly,inthe event thatthe _patientdoes

not use it,itis_quite]ikelythat their familywill regret

it.Itisobvious thatthe_patientwill need _palliativecare

ifthey refuse mechanical ventilatory support, while at

the same time _grieftherapy will benecessary forthe family,

Because each individualhas his/herown sense

of va]ues itis_quitenatural that_peoplehavedifferent perceptionsof thesame information.Afterthefirstvisit

tothe_patientwith thesame disease,thedaughterliving

separately from thefamilyappreciated the re]ationshjp

between thecaregiver and the _patient inwhich _they could say open]y toeach other what was on theirmind,

positiveLy.Ms. A'shusband was struck by the heavy

care burdenand said hedidnot thinkhiswife wou]d

use a ventilator. Ms. A sensed herhusband'sfeelings,

which _{probably preyented} herfromexpressing herwish

tolive,Therewas a small _gapbetweenherhusband's

perceptionof the diseaseand thatof the specialists

and hisfamily.However,his_perception of the disease

changed through the interventionsbythe visiting nurse

and thenurse from_theIntractableDiseasesInformation

Center,buthisand hiswife's perceptionof disability

didnot change. Therefbre,theirdaughterswondered if their mother wou]d bereally happyto havemechanical ventilation, feelingthat she didnot want to expose

herselftoother _people'seyes, which was rooted inher

perceptionof disabilities.As a result, the ambivalent

feelingsof herdaughtersremained unresolved. Itis

possible to bridgethe _gap inthe _perceptions of the

information_giventothe_patientand her familythrough

continuing education by specialists and to solve the problemswhich resu]ted

from

the_gap.However, itis

not easy tochange theirvalues.

Itisnecessary to

_give

informationwhile taking

intoconsideration the relationships among medical care _{practitioners,patient}and family.At the beginning

Ms. A and her family avoided the topic concerning

mechanical ventilation and each of them was worried

about itindividually.The nurse from theIntractable

DiseasesInformationCenterserved as a coordinator

by listeningtowhat Ms. A and herfamilyhad to say

together as well as listeningto them individually.In

addition, arranging visits forMs.A and herfamilyto patientswith _the same diseaseand _providingthem with opportunities totalkwith the_physicianabout mechani-cal ventilation duringherhospitalization,ledherand

herfamilytoseriously consider itsuse, Dependence on mechanical ventilatory support means imposingcare

burdens on the _patient'sfami]y.Itisdifficultforthe patienttomake decisionsifthefamilymembers cannot share the issueswith each other and reach a consensus

even ifinformationhasbeen_giventothem individually. Specialistsneed to faeilitateinteractionarnong family members besides_providingthem with information,

One of thefactorswhich make the _patients'

deci-sion-making regarding mechanical ventilation difficult

isthatthey must decidenot about the_presentsituation

butabout theirfuturecrisis. Particularly,at the stage at which theirdisabilityhas not _yetturned worse they find

itdiMculttoaccept the informationthatthey will need ventilatory support inthefuture.They may beable to

absorb itonly when they facethe crisis. Specialistsurge

the _patientsto make decisionsby_{providingthem} with

information inadvance inorder to _formulate

appropri-ate measures forthe futurecrisis which isinevitable.

There isa major _gap between the _perspective of

patientsforwhom theirfutureisinconceivable,as they

are so overwhelmed bytheir_presentcondition thatthey

do not want to see what the futureholds,and thatof the

specialists who want tooffer support byfocusingon the future.For_patientswith ALS, itissaid thatcontinuing

education appropriate foreach

_progress

of the disease isnecessary. However,unless support isoffered, while

recognizing the_gapbetweenthese_{perspectiyes,}the_gap

of

perceptions

between the _patientsand medical care

practitionerswill remain unchanged.

This article hasdiscussed_professionalsupport

focusingon the

_gap

of

perceptions

as itskey words.

-36-NII-Electronic Library Service

Sincethisresearch dealswith only one case, theauthor

must be _prudent in concluding itsoutcome as the

concept of support for_patientswith ALS in_general.In

addition, thisarticle dealswith a _patientwho hud little contact with theALS _patientssupport _group and other

patientswith thesame diseasebutwas mostly involved

with specialists. Therefore,_theauthor _planstomake comparative case studies of _patientswho have more

contact with othcr _patientswith thc same diseaseand

patientswho have littlecontact with specialists.

V.

Conclusion

One of the factorswhich makc the _patientsiself

decision-making toward mcchanical ventilation

difficultisthe social factorthat the decisiondepends

on the capacity of their familics to_providecare and that itisa decisionnot ubout the_presentsituation but

about thefuturecrisis.There isa big_gapbetweenthe

pcrspectivesof the_patientswho havenot accepted _thcir

presentreality or donot want to see what _the future

holdsand thosc of specialists who _trytosupport them

with a focuson the

future.

Inthisregard, support must

be _providedwhile recegnizing _thesegaps.

Educational information and the attitudes of

physiciansplayimportantroles inthe

decision-making

processof _patients.Information should be _provided

focusingon mechanical ventilation as well as the

merits and demerits of itsuse and non-use. However,it

should be_givenbothfromthe_pcrspectiveof the_patient

and thcirfamily.Sometimes familymembers

do

not share the_problemswith each other even ifeducational

informationhas been _providedtothem and the_patient. Specialistsshould _givesupport tofacilitatcinteraction between the_patientand hisfhcrfamilymembers and encourage _{them to} reach a consensus, not simply

provideinforrnation.

Inthe casc of Ms. A some of the _problems,which

resulted from the _gap of _perceptionsconcerning

information,werc so]ved through the continuing

involvement of specialists.Inorder tobeab]e to accept

disability,_patientsneed to change their values

(Wright,

1960),butinthis_particularcase ithasnot happened

yet.Because of this the _problems arising from the

differentvalues remained unsolved. Exploring an

ap-propriateformof support was the immcdiatechallenge

so thatthe_patientwould not regret her decisionto use

mechanical ventilation.

Notes:t)

The IntractableDiseases Information _Centerisengaged in

the promotionot'comprehensive home medicul care

ticesinc]udingmedical carc _practicesat home,consultation, trainingformedica] care _{practitioners}and researeh, with rhe

main focuson improvement of the _patients'care ment through enhancing thecoordination of institutienal

care and homc rnedical care forintractabledisease_patients.

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