The Philosophy and Practice of Patient Control in Hospice: The Dynamics of Autonomy versus Paternalism

Abstract

The hospice philosophy of care for the terminally ill emphasizes patients' control over their remaining time. This article is based on approximately three years of participant observation research in several hospice settings where the practice of providing patients control, or autonomy, during their remaining life and dying was explored. The findings suggest that, despite the best efforts of hospice staff, attempts to fulfill the goals of this philosophy were constrained by several factors: efforts at symptom control, patient residence, patient disease state, and staff limit setting. Examples, implications, and the staff's attempts at solution are discussed.

An exploration of dignity in palliative care

“…A study of patients and lay carers in the community 18 demonstrated how patients attempt to balance their need for independence with their increasing need for help with advancing disease. M esler 19 also showed how maintaining patients' safety could conflict with their control and autonomy. Palliative care has control and autonomy as one of its basic tenets 20 but this is hard to achieve as this single dimension of dignity is held in tension with the others.…”

Client–nurse relationships in home‐based palliative care: a critical analysis of power relations

“…However, power within the client‐nurse relationship is not well understood. Power expressed through control is particularly important to clients receiving palliative care (Mesler 1995, Morgan 2001, Volker et al. 2004) and, therefore, there is a need for an in‐depth understanding of power within these client–nurse relationships.…”

“…(2000) focused on one particular component of positive relationships, ‘knowing the client,’ but with no mention of power, either as existing within these relationships or as a hindrance to their development. In studying patient control in palliative care, Mesler (1995) offered insight into the potentially negative experiences within the client‐nurse relationship, but did not include a critical examination of power.…”

Control theory in dying: What do we know?

“…8 Mesler states that the principle of increased patient control highlights the classic tensions between autonomy and paternalism in medicine. 35 The most important concern for patients and families may be for professional caregivers to validate their feelings and allow them to make choices. 24, 36 To respond more effectively to patient and family needs, health care professionals will need to assist them to gain a sense of control over distressing symptoms at the end of life.…”