The death of a child is a relatively unusual event and the
modern paediatrician is more familiar with cure and prevention than
with death and dying. While advances in medicine have lead to
happier outcomes for the majority of children, there remains a
group for whom cure is impossible. The relative infrequency with
which death occurs in childhood has implications for those caring
for this group of children. Staff may feel a sense of failure and
impotence. A lack of exposure to dying children may leave them
feeling ill-equipped to support a child and family through this
phase of their care. They may also have become very attached to the
child and family and experience their own grief. All of these
responses are normal but in the absence of adequate self-awareness
and support, health professionals may, over time, become "burnt
Burnout is "the progressive loss of idealism, energy and purpose
experienced by people in the helping professions as a result of the
conditions of their work". ®1 This may manifest as excessive
cynicism, a loss of interest in work and a sense of "going through
the motions". ®2 Other features include fatigue, difficulty
concentrating, depression, anxiety, insomnia, irritability and the
inappropriate use of drugs or alcohol. The consequences for
families are significant as staff affected in this way may
- avoid families or blame them for difficult situations
- be unable to help families define treatment goals and make
- experience physical signs of stress when seeing families
The quality of care may be compromised and families may become
disenchanted with the health professional and seek help elsewhere,
sometimes from inappropriate sources.
There are a number of risk factors for the development of
behaviours and responses which may impact upon patient care and
these can be categorised in the following way:
- Identification with the family or situation
- Unresolved loss and grief in your own past
- Fear of death and disability
- Psychiatric disorder
- Inability to tolerate uncertainty
- Family- related
- Anger, depression
- Uncooperative families
- Family member is a health professional
- Complex or dysfunctional family dynamics
- Well known to staff (eg.friends, relatives, colleagues)
- Intractable pain or difficult symptoms
- Family member/s are friends or relatives of the clinician
- Disagreement about goals of care
- Protracted hospitalisation
While it is common for health professionals to experience
emotions such as anger and sadness in the course of clinical care,
it is important that these do not result in behaviours which could
compromise the quality of that care. Recognition of the emotion
helps control it to some extent as does accepting the normality of
experiencing emotion. It may also be helpful to seek out a trusted
colleague to whom you can talk.
Strategies for self care
Stress amongst staff who provide palliative care for children,
in any setting, is likely to be great, and the stresses involved in
providing palliative care for children may affect the caregivers
ability to provide care in a sensitive and professional manner.
Regular supervision and access to professional expertise by staff
in areas where long term relationships with patients and families
are built up, are important and should ideally be written into job
There are a number of ways in which staff may be supported.
- Formal support through regular team meetings reduces conflict
between staff members as long as open discussion is encouraged.
This is dependent on the structure of the team and the quality of
- Formal support at an individual level is beneficial for some.
It is particularly useful in circumstances where concerns can not
be raised in the group context.
- Informal peer support is generally regarded by staff as most
- Support from family and friends.
- Maintaining perspective through involvement in outside
activities. Formal supervision may assist in developing the
self-awareness necessary to achieve this.
- Education provides staff with the skills they require to
overcome feelings of impotence. In a recent survey of resident
medical officers in the United Kingdom, lack of training in the
breaking of bad news was identified as a serious deficiency in
their education. ®7
The care of the dying child presents enormous challenges but if
done well, has the potential to bring lasting benefits to both the
family and the health professional.
"In my office adjacent to the medical intensive care unit, I
have a growing file of letters from relatives of patients we have
treated, thanking us for our care. But the majority of these
letters are not from families of patients who survived. Rather,
most come from people who have lost a loved one, from the bereaved
survivors of patients who died in our intensive care unit (ICU).
Yet they are deeply grateful for what we did. At first, I found
these letters ironic and odd. I expected and basked in appreciation
for lives saved. But the ones about lives we could not save- those
I had trouble understanding. And I feel guilty. I read the letters
over and over, wondering what the writers meant to me….Saving
deaths, I have come to realize, is as important and rewarding as
1/ Edelwich J, Brodsky A. Burn-out: stages of disillusionment in
the helping professions. Springer. New York. 1980
2/ Stein A, Woolley H. An evaluation of hospice care for children.
in Baum JD, Dominica F, Woodward RN. Listen my child has a lot of
living to do. 1990. London: Oxford University Press.
3/ Meier DE, Back AL, Morrison S. The inner life of physicians and
care of the seriously ill. JAMA 2001; 286: 3007-3014.
4/ Vachon MLS. Staff Stress in hospice/palliative care: a review.
Pall med 1995;9: 91-122.
5/ Association for Children with Life Threatening or Terminal
Conditions and their Families and the Royal College of Paediatrics
and Child Health. " A Guide to the Development of Children's
Palliative Care Services" London 1997.
6/ Woolley H, Stein A, Forrest GC, Baum JD. Staff stress and job
satisfaction at a children's hospice. Arch Dis Child 1989; 64:
7/ Dent A, Condon L, Blair P, Fleming P. A study of bereavement
care after a sudden and unexpected death. Arch Dis Child 1996; 74:
8/ Nelson JE. Saving Lives and Saving Deaths. Ann Int Med 1999;