Abstract
Contemporary spirituality, characterized by ontic fragility like no other time in history, impacts on the death zeitgeist. Contemporary dying is often marked by pain, shame, anxiety, uncertainty and technological complexity, but can be a meaningful experience. The hospice approach leads the way by mandating spiritual care, and in doing so potentially transforms the dying process. This thesis is the first national study of spirituality in New Zealand end-of-life care that is focused in hospices. As a baseline study, it fills a gap that will inform and potentially improve spiritual care for those affected by terminal illness in New Zealand. The research questions considered were: what does spirituality mean for those affected by terminal illness?; what are their spiritual needs?; what do Māori say about spirituality/spiritual care?; and how can spiritual care be improved? A mixed methods approach included an extensive literature review and two discrete studies. Study One involved 52 interviews (patients n=24, family members n=9, staff n=8, chaplains n=8, Māori experts n=3). Study Two surveyed 78% of New Zealand's hospices (N=25, response rate 59%).
The findings show explicit spiritual care is inconsistent. Spirituality is understood broadly in the study samples. They had eclectic spiritual practices and beliefs, there were high spiritual needs, and structural issues need to be addressed to improve spiritual care. The majority had wide ranging beliefs in God and the afterlife, and many believed in paranormal events.
Spiritual needs were affirmed as a critical component of dying and care for those affected by terminal cancer, although up to a third did not want to be asked about them. Spiritual needs were seldom explicitly met by hospices, but the picture was complicated. The majority of patients and family members interviewed in Study One were not aware of receiving spiritual care from their hospice. This was confirmed by participants in Study Two: only 17% of patients and 14% of family members said they had received spiritual care from their hospice. However, the survey revealed that 77% of patients and 67% family had received spiritual care but mostly from their family members. Family members' spiritual needs and capacity to provide spiritual care was an important consideration that needs addressing. Approaches to spiritual care were widely canvassed and a range of approaches detailed. Māori spiritual needs were thought to be reasonably attended to, but with some room for improvement. Staff spirituality was understood to be an important aspect in the continuum of care.
The most compelling evidence for unmet spiritual needs were structural gaps, particularly relating to the lack of spiritual assessment, staff support, training and policy. The role of spiritual care expert/chaplain was shown to be critical, with many challenges, not least whether their title is appropriate. A structural spiritual audit tool revealed room for improvement in all hospices surveyed. This is not a criticism of the compassionate individuals working in hospices, but a challenge for the whole organization.
Dying from terminal cancer is a time for potential spiritual growth, but an improved, more empowering and spiritually conducive hospice ‘space’ is needed. These seminal New Zealand findings should be transferable beyond cancer to other end-of-life settings and add to the growing international evidence affirming the importance of spirituality at end-of-life.