Experience has shown that places where palliative care has not existed before require major cultural adaptation in order for palliative care to be successfully adopted.
Four major stages have been identified in this adaptation, even though sometimes it is possible to recognize features of several stages at the same time.
Stage 1: Denial
Individuals and organizations are not aware of the need for palliative care programs. Although patients have died in institutions or under the care of individuals for many years, there has been limited or no measurement of patient suffering. There is, therefore, limited documentation on the need for a palliative care program.
It is not uncommon that individuals in these organizations deny the existence of the problem and describe their patients as usually having good symptom control.
Denial will be resolved only after major changes occur in the way health care professionals are educated.
Stage 2: Palliphobia
There is recognition by some individuals or organizations that there is a problem, but this usually meets consistent fear about the consequences of the problem and possible solutions. It is not unusual for individuals to fear the unknown, and sometimes people react with great anger. During this stage, many individuals can react in a negative way to the developing palliative care team.
Palliative care teams should be prepared for palliphobia to emerge after they provide enough information to move an institution away from denial.
Stage 3: Pallilalia
This stage usually takes place between two and four years after the establishment of a palliative care initiative. It consists of repetitive nonsense spoken about palliative care without anything being done to advance its development. Individuals and teams have overcome the first two stages but are unable or unwilling to commit the necessary resources for the establishment of a team. This is a dangerous stage and may result in both burnout among palliative care professionals and vanishing of the programs.
Stage 4: Palliactive
Palliative care is recognized by the promotion and support of health care professionals, the designation of an administrative structure (such as a department), the allocation of formal curriculum space and training programs, and — above all — funding.
Unless a palliative care team is able to change the culture of its institution to the palliactive stage, it will not be viable in the medium to long term.
See reference for more information.
Adapted from Bruera E. The development of a palliative care culture. Journal of Palliative Care 2004; 20(4): 316-319. Centre for Bioethics, IRCM.