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Living through the end: The phenomenon of dying at home

Published online by Cambridge University Press:  04 November 2013

Diane N. Solomon  and
Lissi Hansen
Diane N. Solomon*
Affiliation:
Oregon Health and Science University School of Nursing, Portland, Oregon
Lissi Hansen
Affiliation:
Oregon Health and Science University School of Nursing, Portland, Oregon
*
Address correspondence and reprint requests to: Diane N. Solomon, Oregon Health and Science University School of Nursing, 3455 SW Veterans Hospital Road, Portland, Oregon 97239, E-mail: solomodi@ohsu.edu
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Abstract

Objectives:

To explore the unique lived experiences of one patient who died at home and her family members, and to interpret how dying at home influenced patterns of bereavement for this patient's family.

Methods:

Benner's (1985) interpretive phenomenological approach was employed to get at the embedded nature of the social phenomenon of dying at home, uncovering what may be taken for granted by participants — in this case, during and after the patient's home hospice course. The participants were a 78-year-old female diagnosed with amyotrophic lateral sclerosis six months prior to death, her husband, and three of her four children. In line with the patient's wish to die at home, she voluntarily forewent food and drink when she no longer wished to watch her body deteriorate and felt that her life had run its course. She informed her family of this plan, and all were supportive. For data collection, separate single in-depth interviews were conducted with the deceased three months prior to death, and after death with three of her four children and her spouse of 60 years. For data analysis, the interview transcripts were coded for paradigm cases, exemplars, and themes.

Results:

The paradigm case, “The Meaning of Being at Home,” revealed that for study participants, remaining home with hospice provided a richly familiar, quiet, and safe environment for being together over time and focusing on relationships. Exemplars included “Driving Her Own Course” and “Not Being a Burden.” Salient themes encompassed patient and family characteristics, support, emotions, the value of time, and aspects of the healthcare team.

Significance of results:

End-of-life care providers need to hold a patient-centered, family-focused view to facilitate patient and family wishes to remain home to die. Investigation into family relationships, from the perspectives of both patient and family members, longitudinally, may enrich understanding and ability and help patients to die at home.

Keywords

Family relationshipsHome deathHospicePhenomenology
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 2 , April 2015 , pp. 125 - 134
Copyright
Copyright © Cambridge University Press 2013 

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