Palliative care

Staff support

  • Staff support

    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 out".

    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 optimal decisions
    • 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.

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    Risk factors

    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:

    • Clinician-related
      • 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
    • Situation-related
      • Family member/s are friends or relatives of the clinician
      • Uncertainty/ambiguity
      • Disagreement about goals of care
      • Patient/clinician
      • Team
      • Protracted hospitalisation
        ®3,4

    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.

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    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 descriptions. ®5

    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 facilitation.
    • 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 effective
      ®6
    • 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 saving lives."
    ®8

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    References

    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: 114-118.
    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: 522-526.
    8/ Nelson JE. Saving Lives and Saving Deaths. Ann Int Med 1999; 130: 776-777.

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