CRUCIAL DECISIONS AT THE BEGINNING OF LIFEPARENTS' EXPERIENCES OF TREATMENT WITHDRAWL FROM INFANTS

463 Pages·2018·27.909 MB·English

by  MCHAFFIE, HAZEL

Crucial Decisions at the
Beginning of Life
Parents9 experiences of treatment
withdrawal from infants
Hazel E McHaffie
In association with
Peter W Fowlie, Robert Hume, Ian A Laing,
David J Lloyd and Andrew J Lyon
Foreword by
David Harvey
zO\ CRC Press
yCy* J Taylor & Francis Group
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© 2001 Hazel E McHaffie
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Contents
Foreword ix
Abotuhtae u thors xi
At ribute xiii
Acknowledgements xv
Notfeotsrh r ee ader xvii
Liosfiftg ures xix
Liostft a bles xxi
I Introduction I
Treatlmiemnitt ation
1
Whos houdledc ide?
2
3
Whatth e ptahreemnstteshl ivneks
2 Paregnrtiaelf 5
A profound loss 5
Featoufpr aerse lnotsasl
6
7
Emotions
8
Effeocfdt e ath
Helpbienrge paavreedn ts
9
3 Thset umdeyt hod 11
Overdaelsli gn 11
Aims 11
Setting 11
EthCiocmsm iatptpereo val
12
Seleocftt ihsoean m ple
12
Tools
13
Areuansd ienrv estigation
14
Procedure
14
Suppfootrrhti e n terviewer
19
Deviaftriotomhnp esr otocol
19
iv Contents
Coding and analysis 21
Timeframe 22
Ethical considerations 22
Limitations 22
Discussion 23
Conclusion 25
4 The respondent families 27
Distribution 27
Marital status 27
Ages 28
Occupations 28
Parity 29
Obstetric history 30
This pregnancy 30
Distances from study hospitals 31
Travel to the NICU 31
The delivery 32
The babies 32
Conclusion 35
5 Pregnancy and birth 37
Pregnancy up to the onset of labour 37
Complications of pregnancy 37
Warning of coming problems 39
Information givers 39
Responses 40
Satisfaction with management 41
Improvements 41
The labour and delivery 43
Complications during delivery 43
Contact with the baby 46
Information givers 46
Information conveyed soon after the birth 47
Improvements 47
Discussion 52
Conclusions 54
6 When things went wrong 55
When parents realised things were going wrong 55
Factors which alerted parents to the possibility of a
poor outcome 56
Contents v
How information was imparted 59
Satisfaction with this part of the proceedings 63
Areas for suggested improvements 64
Sources of support at this time 79
Discussion 85
Conclusion 88
7 Decision making 89
Who first mentioned treatment limitation? 91
Personnel involved 91
Setting for discussions 92
Timing of first mention 92
Times discussed 95
Initial information 95
Subsequent information 98
Conflicting messages 99
The decision makers 101
Did the right person make the decision? 105
The extent of parental involvement 110
Satisfaction with the limits of parental involvement 110
Consultation 112
Factors which helped parents to decide 113
Was it the right decision? 118
Parents' own perceptions of why treatment was stopped 121
Comparisons of parents according to clinical reason for
withholding treatment 124
Maternal satisfaction with the way in which the decision
was made 125
Paternal satisfaction with the way in which the decision
was made 127
Supportive people during this time of decision making 128
Supportive actions during decision making 129
Areas for improvement 133
Discussion 141
Conclusion 148
8 Management of dying 149
Involvement in the dying process 149
Warning of what might happen 152
The actual experience 154
Parental emotion 162
vi Contents
Place of death 166
Parents' involvement after the death 166
Autopsy 169
Mementoes 173
Involvement of other people 174
Support during the dying process 174
Satisfaction with the management of the dying process 175
Helpful elements of the dying process 176
Unhelpful elements of the dying process 185
Later regrets about the management of the dying process 198
Long-term overall regrets 199
Remaining negative emotions 202
Discussion 206
Conclusion 217
9 The funeral 219
The organisation 219
The setting 219
The officiating person 220
The mourners 220
Support 221
Discussion 227
Conclusion 230
10 Follow-up 231
Attendance at a follow-up bereavement appointment 231
How appointments were made 232
Timing of follow-up visits 232
Those in attendance 234
Who they saw 234
Setting for appointments 235
Length of meetings 235
Discussion of the autopsy 236
Later follow-up 236
New information learned at follow-up 237
Helpful factors 239
Unhelpful factors 245
Visits for other purposes 253
Information obtained from other sources 254
Discussion 254
Conclusion 259
Contents vu
11 The effect of the death on the family 261
Other major stressors 262
Personal changes 264
The parents' relationship 267
Other children 275
The parents' approach to other people 276
Other relationships 277
Sources of happiness 281
Triggers of sadness 287
Overall happiness/sadness 13 months after the death 296
Discussion 297
Conclusion 303
12 Support in bereavement 305
Supportive people in the early weeks following the death 306
Helpful factors in the first few months 306
Unhelpful factors in the first few months 316
Things parents would have liked in the first few months 324
Supportive people in the year following the death 326
Helpful factors in the year following the death 327
Unhelpful factors in the year following the death 334
Things parents would have liked in the year following
the death 343
Bereavement groups 345
The research interview as intervention 349
Discussion 351
Conclusion 365
13 Parents' opinions 367
Limitation of treatment: opinions held shortly after the
death of the baby 367
Limitation of treatment: opinions held 13 months after
the death of the baby 371
Religious beliefs 376
Changed views 379
Advice that parents themselves would give to other parents 382
Discussion 386
Conclusion 391
14 Some concluding thoughts 393
Parents' opinions on the boundaries 393
The decision-making process 395
viii Contents
Who should decide 396
Differences in perception 398
Is parental autonomy an illusion? 400
Communication 401
Meeting parental wishes 403
The value of empirical research in this sensitive area 406
What ought to be done 408
Conclusion 410
15 Recommendations 413
For practice 413
For education 414
For management 414
For research 415
References 417
Appendix 1 Data on non-respondent families 429
Index 433
F o r e w o rd
The last few decades have shown remarkable advances in neonatal care.
Babies now survive at gestational ages which were once thought to be
incompatible with life. Unfortunately, this has a cost. Treatment with ven-
tilation may last many weeks or months and is often very stressful for the
parents, and also for the nursing and medical staff involved in their care.
When a baby dies, very sensitive support is needed for the parents. Their
perceptions may be very different from those of their relatives and profes-
sional advisors. A mother once told me of her feelings after some relatives
had attempted to console her because she had three other children. She
said, 1 had not lost 25% of my children, but 100% of one child'.
Sometimes, it becomes clear that the treatment is doing more harm than
good or even is fruitless in merely prolonging death. The skills of the doc-
tors and nurses are needed more than ever at such times. They need to
achieve consensus and to involve the parents in the difficult process of
decision making.
This is an important book and I am very pleased to have been asked to
write the foreword. It recounts the experiences of families whose babies
died or were involved in the withdrawal of medical treatment. The inter-
views were undertaken after the families were identified in three neonatal
intensive care units in Scotland. A lot of hard work has gone into the pro-
ject and the discussions with the parents lasted many hours. What the par-
ents have to say is very revealing and demonstrates how easy it is to make
mistakes in their care. Their comments are instructive and will help us in
the care of other families. Great care should be taken to use the right name
and gender when talking about the baby. It is important to pay attention
to detail in helping the parents to find the right hospital and department.
As far as possible, named staff should not be changed, so that the parents
do not have to give the medical history yet again and do not have to repeat
the delicate process of building up relationships.
One thing which comes through very clearly is the desire of parents to
be involved in the care of their babies and to take part in the important
decisions which have to be taken. It is encouraging to read of the apprecia-
tion of the parents for the individual time given by the staff. To realise that
it is recognised and valued makes it all worth while.