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Decisions Affecting Quality of Life or Survival for Severely Demented Persons: A Survey on Doctors and Nurses of Nursing Homes and Districts

Simionato, Laura MSc; Di Giulio, Paolo MSc; Dimonte, Valerio MSc; Villani, Daniele MD; Gentile, Simona MD; Toscani, Franco MD; Giunco, Fabrizio MD

Journal of Hospice & Palliative Nursing: November-December 2010 - Volume 12 - Issue 6 - p 378-384
doi: 10.1097/NJH.0b013e3181f74959
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Those caring for severely demented people are often faced with difficult decisions that can affect the patient's survival and quality of life. The objective of the study was to describe these "critical therapeutic decisions" concerning severely demented patients. A questionnaire was distributed to a convenience sample of doctors and nurses working in nursing homes and districts of two Italian provinces. A critical therapeutic decision involves starting, withdrawing, or withholding a treatment perceived as relevant for a patient's survival or quality of life. Data collected included the frequency of critical therapeutic decisions and the description of two recent cases that the respondents had been involved with during the last year. Thirty-five doctors and 80 nurses answered the questionnaire; 48% of the doctors and 23% of the nurses reported being called often/very often to make a critical therapeutic decision mainly related to artificial nutrition/hydration, use of restraints, or pharmacological sedation. One hundred sixty-six cases were reported. The majority of decisions (38% for doctors and 63% for nurses) consisted of interventions, while in 38% of cases for doctors and 11% for nurses the decision was to withhold or withdraw a treatment. Decisions perceived as relevant for the survival or quality of life of demented patients are frequent. Studies to explore reasons behind decisions taken and outcomes are needed.

Author Affiliations: Laura Simionato, RN, is Clinical Tutor, S. Luigi Hospital, Turin, Italy.

Paola Di Giulio, MSc, Professor of Nursing, Department of Public Health, Turin University, Italy.

Valerio Dimonte, MSc, Professor of Nursing, Department of Public Health, Turin University, Italy.

Daniele Villani, MD, is Physician, Casa di Cura Figlie di S. Camillo, Cremona, Italy.

Simona Gentile, MD, is Physician, Sospiro Foundation, Cremona, Italy.

Franco Toscani, MD, is Director, "Lino Maestroni" Foundation-Palliative Medicine Research Institute, Cremona, Italy.

Fabrizio Giunco, MD, is Medical Director, Geriatric Polifunctional Center S. Pietro of Monza, Italy.

Address correspondence to Paola Di Giulio, MSc, Department of Public Health, Turin University 5 bis, via Santena, 20121 Turin, Italy (digiulio@marionegri.it).

© 2010 The Hospice and Palliative Nurses Association