In Search of a Good Death
Giving caregivers and families good support, and information on options
End of life care almost invariably involves conversations with the potential to distress patient and family. There is much opinion expressed in hospice and palliative care literature about the pros and cons of honest and open communication. In practice, it is far from simple for doctors, nurses and other professionals to accurately calibrate the frankness of their communication commensurate with the seriousness of a patient’s condition, and the need for practical decisions to be made.
In this program, Brisbane-based Jenny Fox reflects on her partner Murray’s end of life, from the time he was told “Go home and get your affairs in order.”
One of the most unhelpful things for patient and family is what is termed communication closure, where little is said about each other’s real experience, fears, or concerns – in order to avoid upsetting others – resulting in personal isolation and a breakdown of potential mutual support.
Some degree of denial about the implications of a terminal prognosis may be helpful, because it can be a way of dosing – adjusting to what may be negative, a bit at a time and at a pace that is emotionally manageable. However, such denial may be problematic if it extends to patient and family postponing making crucial practical decisions, and not attending to unfinished business, such as saying “I love you”, or discussing matters of importance before the family member dies.
Things left unsaid, and neglect of practical matters (such as a will and funeral arrangements) may be quite deleterious for the family in its subsequent experience of bereavement and mourning, and in having to adapt to life in the absence of the deceased.
1. How assertive if at all should professional carers be in broaching issues patients and families clearly would prefer to avoid talking about – especially if this is an ingrained pattern in a family?
2. What are some of the ways in which professionals have learned to break open and discuss sensitive or distressing issues in a way that is of benefit to patients and families?
3. What kind of challenges might a family face after the death of a family member, which could be made difficult by there not having been frank and honest conversation before the patient’s death?
Dr John Ashfield