Parents perspectives on the End of Life Care of their child : Rating of the

quality of care
Patient Details :
Name of the Child (optional) :
Hospital No :
Gender
Age :
Diagnosis :
Duration between diagnosis and the loss of the child (MONH!)
Cause of Death :
Disease progression 1
Complications of the primar" disease: 2
reatment complications 3
#nfections 4
$lace of Death :
Hospital 1
Home 2
Hospice 3
On the wa" to hospital 4
#f the child died in Hospital%
whether $atient was #ntubated in the &ast '( hours ) 1
*hether C$+ was done ) 2
*hether ,entilator or an" other t"pe of support was withdrawn ) 3
Not -now 4
Not applicable 0
Parents Details :
.ather :
o Age
o /ducational 0ualification :
1.Under Graduate
2.Post Graduate
3.Professional course
4. School
o Occupation :
1. Skilled
2. Unskilled
3. Professional
o Annual income :
12No income
2.<1,00,000
3.1,00,000-2,00,000
4.2,00,000
Mother :
o Age :
o /ducational 0ualification :
1.Under Graduate
2.Post Graduate
3.Professional course
4. School
o Occupation:
1.Skilled
2.Unskilled
3.Professional
4.!ouse"ife
o Annual #ncome :
1.No income
2.<1,00,000
3.1,00,000-3,00,000
4.3,00,000
Nati3e $lace :
1.Ur#an
2.$ural
+eligion
1.!indu
2.christian
3.muslim
4.other
Questionnaire :
1. Psychological symptoms:
Changes #n 4eha3iour:
12#rritabilit"
'2Dull
52*ithdrawn
#nterested in an" pla"ful6leisure acti3ities
127es
'2No
8nwilling to tal- to the parents about their feelings
127es
'2No
.ear Of Death
127es
'2No
.ear Of 4eing Alone
127es
'2No
'2 Did the child recei3ed treatment for the s"mptoms)
.atigue : 127es6 '2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
$ain : 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
&oss of Appetite : 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
D"spnoea : 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
An:iet" : 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
Constipation : 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
#nsomnia : 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
,omiting : 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
Diarrhoea : 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
4leeding 127es6'2No
#f "es% how successful was the treatment )
19not useful
'9some impact
59useful
52 *ere the ph"sicians easil" approachable to all "our ;ueries about "our child
during the terminal da"s)
19Hardl" e3er
'9Occasionall"
59!ometimes
(9.re;uentl"
<9Almost alwa"s
(2 How would "ou rate the communication about "our child=s progressi3e
disease condition b" the treating ph"sician )
193er" poor
'9poor
59 a3erage
(9 good
<9 e:cellent
<2 *ere "ou able to understand the concept of palliati3e care 3s curati3e care )
19Not at all
'90uite a bit
59completel"
>2 How well did doctor=s counselling help "ou come in terms with acceptance
of the end of life care)
19otall" unacceptable
'98nacceptable
59 !lightl" acceptable
(9Acceptable
<9$erfectl" acceptable
?2 *as the ph"sician acti3el" in3ol3ed in the care at the end of life )
127es
'2No
@2 Did "our ph"sician discuss about the alternati3e6nati3e6complementar"
medicine )
127es
'2No
A2 Did "ou opt for alternati3e medicine )
127es
'2No
#f "esBdetails
C2not applicable
12!iddha
'2a"ur3edic
52homeopath"
(2acupuncture
<2others
1C2Did "ou feel that the alternati3e medicine impro3ed6worsened his s"mptoms
or suffering )
o 12Much more worsening
o '2!omewhat worse
o 52About the same
o (2!omewhat better
o <2Much better
112 *hat were the issues that added to "our miser" while caring for "our child
during his6her terminal da"s )
12Hospital administrati3e issues
'2#n3asi3e procedures
52.inancial
(2#, issues
<2other
1'2*here did "ou wanted "our child to be during the terminal illness)
a2 Hospital
b2 Home
c2 +elati3es house
d2 others
152Ha3e "ou e3er felt guilt" on "our part for his 6 her deteriorated condition)
127es
'2No
#f "es reason B
C9 N6A
1(2 Did "ou feel that the doctors were insensiti3e at "our helplessness and guilt
of not being able to sa3e "our child)
127es
'2No
1<2 Did the treating ph"scians de3oted ade;uate time with "ou6 "our child after
the declaration of palliati3e care for "our child )
19Ne3er
'9+arel"
59!ometimes
(9Often
<9 Alwa"s
1>2Did "ou feel treatment in a different method in same hospital or another
hospital would ha3e helped 6 impacted the outcome)
127es
'2No
#f "es% how ) B
C9N6A
1?2Once "our child had been declared to be on palliati3e care % did "ou find an"
difference in the attitude of the nursing staff or treating ph"sicians towards
"our child)
127es
'2No
#f "es22 details:
C9N6A
1@2+etrospecti3el" what do "ou thin- "ou could ha3e done to better his 6 her
terminal da"s in an" dimension)
1A2*hen the ph"sician wanted to discuss about the end of life decisionsD
i) 7ou ne3er wanted to discuss about it
ii) 7ou wanted to postpone the discussion
iii) hough it was uncomfortable% "ou were willing for
discussing it
'C2 How would "ou rate the following regarding "our child=s treatment D
i) !tandard of care :
19poor
' E fair
59 good
(9 3er" good
< E e:cellent

ii) /motional care :
19poor D
' E fairD
59 good D
(9 3er" good D
< 9 e:cellent
iii) Communication:
19poor D
' E fairD
59 good D
(9 3er" good D
< 9 e:cellent
i3) !ocial support :
19poor D
' E fairD
59 good D
(9 3er" good D
< 9 e:cellent
'12*hat made "ou to opt for continuing aggressi3e therap" inspite of the
ph"sician=s declaration that continuing chemotherap" will not alter the
course of the disease an"more )
127ou felt that chemotherap" will reduce his suffering
'27ou didnt want to gi3e up on "our child
527ou were hoping for a miracle
(27ou wanted to do e3er"thing possible for "our child
<2N6A
''2+etrospecti3el" what do "ou feel about "our decisions)
127ou should ha3e opted onl" for supporti3e therap" as it
would ha3e lessened his 6her suffering instead of aggressi3e
curati3e treatment D
'2*hat "ou opted was right% as "ou wanted to tr" e3er"
possible option for "our child D
52N6A
'52*ould "ou ha3e preferred to meet the medical team after "our child=s
death% or "ou would ha3e preferred the ph"sician to contact "ou after "our
child=s death in telephone )
127es
'2No
'(2 Did "ou thin- the medical team (doctor6nurse) should ha3e attended the
funeral )
127es
'2No