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“The unpredictable death”—The last year of life for patients with advanced COPD: Relatives' stories

Published online by Cambridge University Press:  15 October 2014

Kristina Ek ,
Birgitta Andershed ,
Eva Sahlberg-Blom  and
Britt-Marie Ternestedt
Kristina Ek*
Affiliation:
School of Health and Education, University of Skövde, Skövde, Sweden
Birgitta Andershed
Affiliation:
Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden Department of Nursing, Gjøvik University College, Gjøvik, Norway
Eva Sahlberg-Blom
Affiliation:
School of Health and Medical Sciences, Örebro University, Örebro, Sweden
Britt-Marie Ternestedt
Affiliation:
Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden
*
Address correspondence and reprint requests to: Kristina Ek, University of Skövde, The School of Health and Education, Box 408, SE-541 28 Skövde, Sweden. E-Mail: [email protected]
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Abstract

Objective:

The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.

Method:

Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.

Result:

All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.

Significance of Results:

The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

Keywords

Chronic obstructive pulmonary diseaseEnd of lifePalliative careOxygen therapyDying and death
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 5 , October 2015 , pp. 1213 - 1222
Copyright
Copyright © Cambridge University Press 2014 

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