EL SURGIMIENTO DE LA BIOÉTICA

. - : . . : .cmPTERyii, : , ... _.

: . . . THE\ PHYSICAL ASPEq?/ ' . . . ' . \

]h a papeu read to Thq Obstétrical Society of W W o n lh lSôl,

Little (1) spoke thuss

Nearly twenty-years ago, In a course of lectures published

in the * Lancet *, - and more fully In a * Treatise on Deformities ♦, published In 185$, 1 showed that premature birth, difficult

labours, mechanical injuries during parturition to head and :

neck, where life had been saved, convulsions following the act

of birth, were apt to be suoceoded by a determinate affection of the limbs of the child which I designated spastic rigidity

of the limbs of new born children

Based on his own observations of 200 cases over a period of from one to twenty years, this paper contains a graphically detailed account of "the mental and physical derangements of the infant whiph can be referred to the effects of abnormal parturition and asphyxia at birth#" The more ixi^ortant of those he mentions are deformities, contractions^ shortening of the limbs, affection of muscle tone, occasional atypicality of the cranium, difficulties ;■ in swallowing, uncommon sensitivity to external iaipression, :

particularly noise, sleep disturbance and somstlmsp twitcMng of the face# Sh^alrment of intellect and speech are also cited as possibilities#

Little points out tlmt occasionally the condition is. reoog#»

nised from the beginning because of the weakness/ of the limbs, blit frequently not until three to four months, lÀen difficulty

in handling the child is noticed during washing and droselngf Ho

mentions that even, slight cases rarely "go .alone?* before three to

four years of age^ and remarks of speech difficulties that they vary from "inability to utter particuLar. letters up to entire loss of articulating powers" A similar rangé is to be found in intellectual ln^aiment,i "The Intellectual functions are sometimes quite unaffected, but in the majority of cases the Intellect

suffers ** from the slightest impairment which the parent willingly aclmox^Ledges or fails to perceive up, to entire Imbecility*

little *8 work, because of its primoy and its own excellence, has become so.much a olassio in the field that the type of cerebral palsy he described is still at times referred to as little*s

' disease.,

Writing nearly a hundred years later Aslier and Schonell (2) listed the. signs of cerebral paièÿ as follows: difficulty in, wallcing, in using the hands, and in speech; siobbering and

grimacing, fits, incontinence, visual defects, deafnessunder- development in size and weighty atypical head" circumference, and other abnormalities such as asthma and migraine* , • ' ,

, Ideas as to the signs of cerebral palsy have therefore altered

little, but not 80 ideas on .classification* One, twq, three or

fdûr limbs may be affected, or all limbs plus trunk,= face and ‘ -

tongue.* The type and severity of the affection vary also, ; " Classification is therefore obviously necessary and this has . taken various forais. Freud (3) was among the first to make such

: ■ ^ V / : v P ' ' ; / . ,

an attempt when in 1897< he drew. a distinction.=between the unilateral and bilateral disprdeiis ^or lieBiiplegla and* diplegia» The classification of most widespread■use: to-day is not a nearo-

logical çlassiflopMpn at all, but the clinical one of Phelps.

On the clinical evidence of muscle tonehe subdivided the cerebral palsies into the six main, categories: ofi Spasticity,

Athetosis, Attnda., Tremor, Rigidity, and Flaecidity. Frequently

categorlsatlon of the number of limbs involved is used, combining monoplegia, hemiplegia, or paraplegia, =triplegia and tretrapiegia (or quadriplegia). with any of the six categories previously ; - .mentioned. Very recently Balf and Ingram (4) have put forward ;

a further neurological classification based : on the early - one of

Fraud, but more elaborate# They maintain that an internationally

accepted .classification is now necessary to,facilitate research. For the purposes of the medical aspect of the present survey the

older classification of Phelps was used#. ; Since, it will sometimes be convenient in the.cpurse of the psychological, study to-refer

to these categories, a lay interpretationsuch, as was given' to

the parents on request, is added, for the sake of clarity#

Spasticity results In too little movement and the affected

limbs are stiff and awWard. Athetosis,, on ithe iother hand, - , ;

designates too muqh mpyemehtvwhich is involimtary,,and difficult ,

to control. Ataxia denotes : a lack of balance .with difficulty in ' controlling the limbs. TremorRigidity, and Flaceidity are self»*

- y

.of' the medical work of » the sm'voy and the resiiltlng clkssïfïôatlbn: jpf cases Vms available to-those engaged in other aspects, of stüdÿ.v

. ' Olasslfication for. the 223 cases xvas as shown in Table ;1.\ It shoyjrs that by, far : thé greater nimber'of cases was olasslfied ;. . as - Spastic and that almost' half' the totaJ. number \was 'accounted ' for; bÿ the two categories ;of 'right spastic ■ heiulplëgiâ and - spastic; . quadrlplegik, ■ meaning respectively, - affection of the right' arm ' ■ and leg with = the arm more . severely/ involved^ : and;, all' four limbs - ' ; ' "/ ' - ' _{affected, ' the lower to a greater ’degree than the .upper; limbs#■:} . '

' ' ■ , - - - 'ÏABIe U. ■ . : CLA.SSIfICMiOr'OE.’CASBS ■■ ■ '> ■ - . Cikssifibatioh'-- ' ; ' \ ^ M%bér : . % ' Spastic ' - ' ' - \ Monoplegia-.' ■ ; Hsmiplegi; ' ; ' ' ;.,.. P a i ' a p l é g i â , ; Trlplegik • ' ' .Quadriplegia/ ' ’ Total Spastic‘ ' : '10:' / . y -- - -28;;: . .. 2|.. ; . ■■ : 5 Ï V , . • ■ 17?.-■ , Athatoid . _{/ , / 'W.} Atazcic ■' Miked _{. . 'VIS/} Other

Further classification according to severity is'shown in- Table 2, on the following page» , ■ ■> < ' • ■ ’ ■ ' " ; i

25

adequate picture of the handicap*

TABIE 2 '

CIA8SIPIGATIÜN ACCORDING TO GEVïÜLIfY

1 2 3 . 4 r>

Severity mid Moderate Severe Total

•.Number 94 É0 49 223

As Little (5) pointed out cerebral palsy is apt to bring other disabilities in its train# Numbers of cases in. the Dundee survey suffering from the more, commonly associated handicaps of vision, hearing, and epilepsy are shown *in Table 3«

TABIE 3

ASSOCIATED DISABILITIES

Handicap Vision Hearing Epilepsy

Slight 50 20 7

Severe 27 • 5 56

The presence of assoGiated disabilities was a complicating factor, In one case, where the cerebral palsy was described as mild,

blindness was present# For another total deafness eclipsed any

other handicap and in some cases epilepsy was more disabling than

the cerebral palsy itself# Cerebral palsy tends to be associated with multiple handicaps#

£>si^^a§i

involved, or, at the .other extremq, all four plus' trimk, face and tongue. It also varies in severity, It may be accompanied ; by additional handicaps of mental defect, epilepsy, or mdre rarely by hydrocephaly, sometiBies by defects of vision or hearing, and

occasionally by. total, blindness or deafness. Many : cases could equally well have been included in surveys bf mental defect,

epilepsy or speeoh defect as in one of cerebral palsy. Glassifi»*»’'

cation in clinical or neurological terms is a medical question and from the psychological point of view, it mattered less what the. actual disabilities were, and more what they meant, in

functional,terms, for the, individual* ^Sinee the limbs are affected, there are frequently difficulties in the Use of the

hands or in .walkiiig. Affection of the face • and tongue may inter- fere with speech, e^/allowing; and. control of saliva# Fits may

restrict independence* Tq •^.ssess-.What;- in practice, the’handicap meant in the life of the cerebral palsied person, it was necessary to think in terms of functional: disability# Interest was in the four areass 1, .appearanceand manner; ' g# ,speech; 3* self-care, as, regards eating, dressing, washing and toilet| 4* wolldng and

the use of public transport* Âge was obviously important in •considering ability and disability in these spheres and the 223

cases were accordingly divided into those of school age and those older and younger as shown in Table 4, on the following page.

27

' : : AGE GROUPS

1- ' _{' - y'4 ' " -} 5.', ' '. - .

. r,Group. ...' , Pro*"8ohool School \ PoatT"Sohool . Total

I#%bor 4§ ' - ' : 45.'. .. ; ' '223': . , \ U n d e r ytWh, h e a d i n g o^oq w m d i v i d o d i n t o , fo u r G « , # g o r l e 8 % * d n g i n g . f r o m : t h o e o - W h o w o u l d ^ o q d q q q n , b o t h c o m t é $ t o t h p g q w h o q v e r o . a b n p : m i e l , I n ^ b o t h a p p o n r a ^ e , o ÿ i d . m s n n o r , ^ I j K e e u l t n w o - . g i y e n i n ' T a b l e ,5#,... y. . .... - . . / \ .... . . _ ' V , '.TAB$; 5.' = A y / \ ; . . . ., \ . , ..,Appj!:AmwE # D , m m w .. : . . \ 2 " 4 6 Grolap\ - Paao'as''

Morma3, AbnoiiAal / : Appoarande

Abnormal Manner Abnormal .'ÆotaL- . \ Prow.8ohooi ' f ' ' ''"t , 2 7 . 0 . 10 _{; 8 ■.'} ■ W . School . .. : 66.' . ' : :-' 1 2 '=:.' 2 0' 3 5 ' ■. ■::.X33 Poot^Sohool 1 9 ; 1 " s o h5 - Total :112. . 13 -. 35 63 ; ■ . 283 .

Aiûsg of tho oorobral pelsiod hero btudiodp m o m warn m t W as abnormal In mmmor than % appoarai%G0 and àlmoot oxàotly half paôsed as nori#li or aimdst normal, In bdth# The dppaaranpo of

horaiality eân malto' lif e much dasior for tW oombral peJldled ))ôraon,

; t^Wthér it W at the qqmpetltlve level of finding a job or in the. . roatrioteddhvlionmant ôf tliehomd#

28

, 3htelliglbillty xms the Important factor. In many, cases ability in.'speech .was W83JL bslqw the qhrpnologlcal age, but if it, waé without defect/It was classed as normal# Table 6 shçx'US ' thàt fully half had normal speech. At the other extreme just under

20^ were unable to talk at all# Of these a few babbled, though most could only malce noises. This category included three oWl.drén under two. year's i

of

age,. but all oyer 14 months old, . ^. ..:. =

_ , TABm6/,; = .% . ; = - J,. ' '

' : . ' : % gmcH'- . . . V. ..% -

1 " 2 ₃ 4 5 6

Group Normal Slightly Very Babbling Total

Defective Defective or Nil

Pre-School . 24 _{. , . ..xy}3./y : ' ./ig.- r. . 45'

School " 75".' 27 10 _Z1 133

Post-School .,26.,.. . ...%) . 5 . : .; \ 6 : ■■,-1,45 ■ :

Total .-3:2 5,::.. , ,;3^ lë ... : Ag23, -■ ,■

' ‘ Sei.f-care ~ - : .

As regards self4care, ratings had to be carefully ^aded

according to age. Children under school age were clapsified as

independent in self-care if able to feed themselves and make some contribution». however small, to dressing for instance,- Those of

' ■ ■ ' V ; - J ^ ,.iq , ',i ' ' 7 % - -

school age but eight years or less g were similarly classified) if they were independent In all lines apart from requiring minor

' . : ' ' ' '

necessary to secure a fating of independent for those over eight years old# Washing# it should he • pointed out) did not; include

/. : \ ./ : y : : -

bathing# Table 7 shorn the ratings. ‘ ' \ i .;

SELMAEB ' . . . ^

■ ,1 ■ . • ■ _{: V ,} . ■r, '% ' > ■■ ■

Group Independent Assiatanoe Total Total

. , Required Dependence' .Pre-School . ' \ 26 i // \ . :cl3" .'.1 r /. . . 6 : ' : ' / School 5 9 5 2 2 2 1 3 3 Poat-School ' i/.' , 3 2 , \ : y ' .'..,7;-: ; ' ' . . 6 ; : V. . . , , . . - 4 5 ' . ^ t a l _ ... .11?.-..,.,. _{„ , . , 2 2 3} ■ ( ' . ■ j

#)bllity was considered from two aspects, imlldng,and the use

: . ■ ■ • - / ■ .' ■ - . . '

of public transport# Table 8 showe ability in walking# .

; ' . . ' ■ : TABIB S ■ ,, ; , , : : - v / ■

■ ' ■ ■ WAIKIHO . : "

.. :2' ' .' .,., ' . : ... 31 . ' ' " 6 ‘ Almost

'Normal Sliglrtlj ..Incapacitated farl{0<Hy ,,Xnoapacltated , #'#le Total Tre-dchool, School Pdst-^Sohqol ' :6",.

4

/ - / - y ' . ' : ' ■'./ '.

Ê

: ; / ^6 /■■'■■■' . 21 .' ' 12". '

1:

/'45 ‘ Total/:/ . /‘3 f ■■-/./:93‘ _{--- ----L---}“ :.

39

.'. '

223

.-• ■; - .A

Thus about half w@3k;a^gt normally, qr wi^h no more^than slight

30

was under -14 mpnths,. which la thp average age for comieiiclng

, walking)' approximately qne: quarter of the total mmiber were unable to wallc,' The very high proportion of pre^^-aohool chiJLdreq in this f category shoi^: that delay In starting to walk; is .of, frequent f; > i . :; -oecnrrenée among the" cerebral palsied# .■ j,.-: V -

’ ! This' tendency for the youngest to be raost restricted ! is almost reversed .When use of public transport;is considered. ,=No

the youngest .children can travel by public transport .because' they,' can be carried, but none of the ' oldest ^oup, comas into tMs ’ • category* This ■point provides an illustration of the way - In y%lch

thé diffioulties imposed by handicap tend to become more .apparent as the child grows. /Table 9 shows the ratings given.

- .. './V - / Y' : \TABÜS-9 - ' A/' / - ' :

USEOFPUBLIGTRAMSPORT' .

'1 ", ' . ; - V : :- " '6 :/

Able to _{Alone Accompanied OarriéÜ' Ükiablé Total}

Travel

Pre^Sçhôôi 0 . 17 , •25 3 ' •: • 45

School _{"# / ."•■ " ' % /' '• '} : ■ 'a? _{' • : 133 ■}

F6st*-6ohoo^ '■■22, ^■' ' 12 '. \ " - .0 r - 45

Total • $ A '-i . ■ • , '223 '

While tables, 5 tq 9 give the numbers suffering from various , degrees and types of :inoapacity as a réduit' of' handicap/ they do• not demonstrate sufficiently forcibly the impact of hondieap upon the individual. The result of adding one disability to another is

.important* Difficulty in walking, aq an ioq];ated handicap is a vëiÿ different thing: from J difficulty' in walldng added to marked incapa')? city of the hands and a speech defect. Ry itself, difficulty in walking is unlikely to debar from education or employtnent# If^- however ) hands and speech are also markedly involved normal

educational and vocational facilities may be quite inappropriate* -

As Phelps (6) says:, the combination of haiidicaps is such

that one and one, instead of equalling two/ often equals three y since' the effect of one handicap on another is such as to mask the total efficiency of the: individual*

M m , /,/ :

From these separate tables.a. more complete picture was

obtained by devising a disability index as followss a disability

or limited efficiency in any of these four areas of appearance and

manner / speeph/self*"Care and mobility was counted as 1/ and hence

an index of 0 meant that the person was no more than slightly > abnormal in either appearance or manner^ had fairly readily

intelligible speech; was independent as regards self-care, or ‘ .

required only minor help in dressing if under eight years of age;; and was able to get about and to use public vehicles, alone.if over eight years old and otherwise accompanied; :i#ile, at the other, extreme ^ an index of 4 indipated immobility^ total dependence ^ the

lack of inteiligibld speech and obvious apparent abnormality.

17^were excluded» while those between three,and five scored no . , disability as.regards self-carej if able to. eat by themselves and make some minor contributions to other aspects of their pare, -à slight abnormality in appearance or manner was not counted) but

a marked abnormality in either, ; or a slight one in both/ was. , , The resulting distribution of: the.223 cases , was as sho#i in

Tsbieiq*/, ./ / .y- .y TABIÈ1 0,-. . V. / .. : / , : INDEX OF .DISABILITY • . _ . .. : . , Ik' _■ 3v 4 .451 7 8 , Index 0 1 _{.. 2 - .3/'} 4 Not Applicable Total , / .Number = "'76''/.' 50 22 99 , 29 : 17 223

A further table shows disability index in relation to

, . - I . TABLE 11, . . ' . ' .

. DISABILITY INDEX. AND AGE

• ' 2 ■ ^ 3 ; 4 ': '5.' 6 _{•' ;y y . •; a :} Group ‘ . _{: i . .} : =4 Applicable, Total Pre-School 10 a ■

%

_' 4 - ■ 5 ' ■' 45 School 50 32 : . 15 15 '21 ' O-'O : 133 . ■■ Post-School 16 10 3 10 6 ■ '■ b ^ ' , .45- . Total 76 50 'aa ' £9 29 ' l7 ■■ V 7

:-m

■

Tables 10 and 11 together show that about one third of'the numbep -included in i.each ago. group

mm

fimptipnally efficient -in all the aspects Considered,. While, 13)6 are efficient in none of

33

them® Thus the eases studied showed a great variety of degrees

of offieieney or disability, and to say that a person belonged

to this cerebral palsy group gave very little information about

him® It obuld mean that he suffered a slight incapacity in

walking or that he was totally dependent and bedridden for life® It was as informative as Imowing that a person has a visual

impairment, which might mean anything ranging from a slight

imperfection which glasses can correct to total blindness® Unlike the blind and the deaf, the cerebral palsied are not a homogeneous group even in respect of their nominal disability® The differ­ ences within the group may be far greater than the differences between those mildly handicapped by cerebral palsy, and the non- handicapped® Thus those with a disability index of 0 had much

more in common with the normal than with those of index 3 and 4

within the cerebral palsied group#

The degree of severity of the cerebral palsy as classified during the medical examination, and the index of disability, taken together in Table 12, on the fo3JLo?/ing page, demonstrate beyond a

doubt that mildness of cerebral palsy and mildness of disability tend to go together while severe cerebral palsy and severe dis­

ability are similarly associated® While the trend is marked, there

is no one to one relationship, and one case^ whose functional

disability places him in the least handicapped group, is yet classified as having a severe degree of cerebral palsy® Three others, wliose limitations are very severe, suffered a mild d<

3 4

of cerebral palsy." ■ ■ * '/ - '■' '•

: ' mOEX OF DISABILITY «AND- SEVERITY OF CEREBRAL PALSY i ^

:,:kl .. = , ..

a

4 , -5 . .6 .

Ihdex 0

1

2

₃

4 Not Total

; Applicable, 1

' Severity; . _{•: ; ■' .}

mid 57

16

6

_{6 '•} 3 6 90

: ! -Moderate ' : ;iâv 'i■ 2®.; 11 ,k , ••

.10

Severe 1 ;

6

5

13

19 5,, 49

Total 76

50

22 29 29 _. 1 7. ' ' #23

$"Did cerebral palsy with aocompanying^Gpllopsy or mental handicap may result- in Serious functional disability# Within ' this cerebral palsied group were persons who could equally properly have been

classified ao mentally handicapped, ds epileptic, or as defective in vision or hearing* In a heterogeneous group such as this there can be no typical cerebral palsied person and no typical life for the cerebral palsied* ■ = - •• y •>

' ' The general approach to the problem was to consider the ■ % handles^ as secondary and the person as of paramount importance* This was not difflcuit in the majority of cases. Case V, i\ho was attending school and finding it a struggle to keep up with hie

noh-handicapped tmn, was readily'seen in this light®.' So, too, was case VI* She W s Wprlcing and earning a living/ but finding idifflcultles in changing her job because of the reluctance of

: her limbs/ She told of her" difficulties in donclbg, which wore . hot, however, so great that she tvould hove Cohoidèred giving i t .

up# Such an approach wàe easily made too, to case Vll despite her hydroC0pha2y" Miich resulted in her being top heavy and imable

to walk/ but she was attending school; ahd living with other oh:lld-

ren# For a nalnority of cases/ however; this approach seemed all bhb impossible* There was, for instance, case-Vlll lying helpless

in an institution, his only form of cOimunioatidn, and almost/his

bhly' si^i of life a Mnning sinilb, or çasé IX/ another institution boy, lirapt away: in lethai'^ and hardly able tb be contacted# 3h 'these; Cases the handicap ivas so gross that It oyershkdcAATsd and'

even obliterated the problems bf ordinary person -and; precluded

In document Vida y Ética Año 5, Nº 2, 2004 (número completo) (página 186-193)