Involvement of hospital nurses in care decisions related to administration of artificial nutrition or hydration (ANH) in patients with dementia: a qualitative study.

BACKGROUND

Nurses that care for patients with advanced dementia are increasingly faced with consequences of disease progression, often requiring them to decide whether to artificially feed these patients. Clarifying how nurses can be better supported in complex care processes involving ethically sensitive decision-making requires that their practice be mapped out.

OBJECTIVES

The aims of this study were to explore and describe how nurses are involved in the care that surrounds decisions concerning artificial nutrition or hydration in hospitalized patients with dementia.

DESIGN

We used a qualitative interview design. Data collection and analysis were informed by the grounded theory approach.

SETTING

Nine hospitals geographically spread throughout the five provinces of Flanders, Belgium.

PARTICIPANTS

Twenty-one nurses were purposively selected for interview, with the aim of including nurses that reflected diverse personal characteristics and experiences with the subject matter.

METHODS

Between April 2008 and June 2009, we conducted 21 interviews that were audiotaped and later transcribed. Data processing involved (1) simultaneous and systematic data collection and analysis, (2) constant forwards-backwards wave, (3) continuous dialogue with the data, and (4) interactive team processes.

RESULTS

Nurses' involvement was characterized by a desire to provide 'good care', which was the basis for their motivation and aspiration during the care process. Early in the process, nurses developed a holistic picture of their patients, laying the foundation of their 'good care' view. During the actual decision-making, nurses fulfilled the roles of messengers and guiding communicators, as they attempted to realize their 'good care' view. Nurses judged the physicians' decisions in light of their care view. If a decision matched their view, they supported the decision. If not, they resisted it openly or covertly. Some nurses remained passively in the background, while others took action to override the decision. Nurses' involvement ended with the intensive aftercare of the patients and their family.

CONCLUSIONS

Nurses are closely and continuously involved in the care that surrounds decisions concerning artificial nutrition or hydration in hospitalized patients with advanced dementia. During the care process, nurses play several and specific roles, giving their contribution a unique and variable character.