What can we learn from the experiences of paediatric consultants when a child dies

1
What can we learn from the experiences of
paediatric consultants when a child dies?

• Anna Baverstock¹ ² Fiona Finlay²
• Community Child Health Department
• Taunton ¹ Bath ²

2
Death
3
The death of a baby is like a stone cast into
the stillness of a quiet pool the concentric
ripples of despair sweep out in all directions,
affecting many, many people.
De Frain 1991
4
Children
5
Background

• Personal Experience
• Grief
• Coping mechanisms

6
End of life care

7
Aims

• To describe how paediatric consultants report
  dealing with child and neonatal deaths as part of
  their daily work.
• To study current practice
• decision making
• talking to parents
• coping strategies

8
Method

• Self administered questionnaire sent to 100
  paediatric consultants within the south west
  region.
• Full MREC approval.

9
Results

• 61 questionnaires completed returned.

10
Background data

• 40 male, 21 female
• 36 tertiary centre.
• Acute cover when on call
• Gen paeds 69, NICU 62, HDU 34
• AE 33, PICU 5.
• 52 (82) had their own children
• 26 (43) had religious or cultural beliefs.

11
Number of deaths

• 50 (82) at least one child death each year.
• 45 (74) were involved with at least one neonatal
  death each year.

12
Questions / Responses

• Child Health Care
• Dev Nov 2008

13
Regarding decision making to stop resuscitation

• How did you make the decision?
• Team decision 20
• Time / futile situation 28
• End of life plan 5

14
Regarding decision making to stop resuscitation

• How did you feel about stopping ?
• Have you ever had any doubts?

15
Decisions during Resuscitation

• we can never be absolutely certain about
  outcome
• attempted resuscitations always stressful. When
  not rapidly successful..are we right to
  continue?

16
Decisions during Resuscitation

• it must be a normal response to doubt ones
  decision to stop supporting a life
• once it is done it is done
• I was relieved I had been on call..was
  available to make the decision

17
Withdraw or withhold treatment
18
In your experience what factors make the
decision to withdraw / withhold life-sustaining
treatment difficult?

• Uncertainty 24 (39)
• The cure just around the corner
• Disagreement 27 (44)
• Differing opinions amongst family and health
  professionals
• Unrealistic expectations

19
In a situation where it is difficult to predict
prognosis accurately, what are your strategies to
deal with this?

• Discussion with colleagues 41 (67)
• Get a second opinion, discuss with local ethics
  committee
• Honesty and time with parents 17 (28)
• Process of discussion over time
• Be honest about what I know and what is likely

20
Have you had experience of conflict/ differing
opinions on whether to withhold / withdraw life
sustaining treatment?

• Yes 35 (57)
• Absent parents wanting everything done
• Varying opinions on prognosis shades of grey
• Father wanted to let infant die, mother could
  not allow herself to say yes
• No 24 (39)
• Blank 2 (3)

21
How was the conflict resolved?

• We dont all come to the same conclusion at the
  same time..there is never 100 certainty in
  medicine.balances have to be made
• Unable to resolve situation therefore care was
  not withdrawn and child survived with extremely
  severe disabilities.

22
Talking with parents

• Discussions go well if..
• Discussions more difficult if

23
Department Support

• Guidelines on how to support staff?
• Yes 33
• Staff in department who support families?
• Yes 64
• Staff in department who support staff?
• Yes 51

24
Department Resources

• Regular meetings 21
• Staff support group 8
• Individual support 33
• Training 18
• Nothing 21

25
Debrief

• Do you think a debrief is useful?
• Yes 85

26
Individual support

• Built up own networks
• Seek support from
• Spouse / partner 70
• Consultant colleague 57
• Family and friends 46
• support comes from knowing you are part of a
  team..decisions and emotions shared

27
COPE scale (Carver 1997)

• 85 accept reality of situation
• as you become more experienced you realise you
  cant cure everyone and it is making the
  inevitable less painful that is important

28
COPE

• 49 try and see it in a more positive light
• Support in spiritual or religious beliefs
• Think about it less cinema, reading, shopping or
  exercise

29
COPE

• Separate themselves from the situation
• It is a job
• I try to remember it didnt happen to me.it
  happened to them

30
COPE

• I worry that I no longer get upset is that
  better coping orhiding feelings that should be
  expressed?

31
If you have been a consultant for what is the biggest change from being a
registrar?

• Responsibility 17 (85)
• Freedom and responsibility
• Feeling of responsibility and isolation
• The buck stops with you.you need to get it
  right
• Decision making 6 (30)
• The decision made weighs heavy

32
If you have been a consultant for 5 years, what
has experience taught you?

• Themes included
• Keep perspective / know limitations 24
• Compassion humanity 15
• Sensitive to differences 15
• Communicate document well 13
• Death happens 10
• Importance of Team working 7
• Learn to recognise grief 7

33
If you have been a consultant for 5 years, what
has experience taught you?

• There is such a thing as a good death
  experience
• We are not superhuman .it is ok to share this
  
• The more I know the more I dont know
• Let them disagree with you.
• The team we work with is invaluable

34
Children remembered

• boy dying at home on a lovely spring morning
  with the window open and chaffinches singing
  outside
• first baby as SHO..overwhelmed with grief and
  embarrassed that I was crying in the middle of
  AE

35
Registrars - unresolved issues

• I felt like the grim reaper when asked to remove
  the ET tube
• Was everything humanly possible done?
• It was so brutal - an awful death that will stay
  with me
• I felt completely powerless Arch Dis Child
  2006

36
Discussion
37
Decisions

• Nothing is more difficult, and therefore more
  precious, than to be able to decide. Napoleon
  Bonaparte

38
Decisions

• Partnership between
• professionals and
• patients / parents.

Quick decisions are unsafe decisions. Sophocle
s 496 BC
39
Withdraw or withhold treatment

• Publications RCPCH, BMA GMC.
• Complex decision making process.

40
Support

• Satisfaction in providing good end of life care
• Grief reactions of doctors similar to the death
  of a loved one (Behnke)
• It is beneficial to assist staff in dealing with
  their emotions. Provide an atmosphere that
  promotes the mourning process. (Stutts)

41
End of life careCaring for a dying child must
be a shared professional experience.burden too
great for any one person (Bernice Harper)
42
Empathy and Compassion

• Empathy and compassion are precious but frail
  commodities.

43
Communication with families

• Doctors and patients talk to each other in
  different voices. (Mischler EG)
• Information without perspective is just a higher
  form of ignorance. (Dalrymple 1998)

44
Communication with families

• Work together towards replacing the fading hope
  for survival with the hope for relief of
  suffering. (Baergen R Ped Nurs 2006)
• Save a death. (Nelson 1999)

45
Conclusion

• We can learn from the experiences of consultants.
• Decision making rarely straightforward.
• Good communication
• Support

46
Conclusion

• Consultants although working within a team do
  feel the burden of decisions made.
• the parents lives are changed forever

47
Conclusion

• Consultants built up personal support networks
  and individual coping strategies.
• BUT
• Realise not all encompassing

48
The Challenge

• Finding a work based support structure
• Practical
• Accessible
• Flexible
• Accommodate all

49
Staff Grief

• How can we genuinely care giving oneself totally
  yet preserving oneself totally?
• Bernice Harper
• Chapter 11 Staff Support
• Hospice Care for Children

50
Final thought
A physician will hardly be thought very careful
of the health of his patients if he neglects his
own. Galen 130-200 AD
51
Any Questions?
anna.baverstock_at_tst.nhs.uk
52
Suggestions to consider

• Immediate -
• support team
• sit down together and review what happened
• Short Term -
• debrief ( consider joint chair)
• meeting with family
• attend funeral?
• Longer Term -
• meeting with family to involve registrar?
• individual support