In his acceptance of the award he challenged the audience to be a prophet to give voice to stories of people dying well that illustrate serene acceptance of dying. He spoke of the current societal discourse, a culturally sanctioned discourse about life-threatening illness. We use terms such as ‘fighting the illness’. He asked the question ‘does a warlike approach help?’ He quoted the serenity prayer and asked: When it comes to not being able to change the fact of dying, how does a person come to see and accept they are dying in a culture that discourages acceptance of dying?
It is the same with health care professionals. They do not readily bring up the question of dying. In palliative care we are more confident and capable of talking about end of life and about dying. Palliative care staff are more ready to listen and our patients who have chosen palliative care have chosen carers who are grounded in wisdom and acceptance of dying. However, the stories about patients who have a narrative about accepting dying and serenity in approaching dying are lost in the obituary. The language of the obituary is ‘after a courageous battle’.
Can society learn from these narratives about wisdom, acceptance and serenity? Can we tell these stories that will resonate with people faced with illness, that are important in giving them a different narrative for their own illness?
Until patients and families are allowed to have discussions about dying palliative care will be ‘a last minute rescue from terminal agony.’
The CHPCA report that of the 259,000 Canadians who die each year only 16-30% of people have access to palliative care. Dr Henteleff challenged the audience to consider the fact that only this small proportion of Canadians receive palliative care is more about a lack of demand than about limited access to palliative care services. The stories about patients’ and family members’ experience of care in hospice palliative services must be given voice. We need promotional material to attract vulnerable people to hospice palliative care services; using key words that may resonate with patients about options of palliative care. We need the media to publicise these stories; we need creative writing workshops with the theme of coming to terms with dying; the school system should include teaching about dealing with death so that death is accepted as part of life rather than as a crisis so that we can develop a culture for individual coping.
Society currently lacks a script for coming to terms with dying; Dr Henteleff’s challenge is that it is up to palliative care personnel to help develop this script. This is what will increase the demand for palliative care and improve patients’ comfort in the initial approach to a palliative care service.
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