Living in Liminality—Being Simultaneously Visible and Invisible: Caregivers' Narratives of Palliative Care

Abstract

Palliative care is an integral part of care and takes place in many settings—including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. The findings are discussed in the light of the theoretical concepts of liminality, lived body, and power. A potential impending risk exists of being abandoned when one is the primary caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken, needs. This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered—including the individual's history, family and loved ones, and individual strengths and weaknesses.

KEYWORDS:

• narrative
• palliative home care
• person-centered
• liminality