RESEARCH ARTICLE
Patient Perspectives of Dignity, Autonomy
and Control at the End of Life: Systematic
Review and Meta-Ethnography
Andrea Rodríguez-Prat
1
, Cristina Monforte-Royo
2
, Josep Porta-Sales
3,4
,
Xavier Escribano
1
, Albert Balaguer
4
*
1 Faculty of Humanities, Universitat Internacional de Catalunya. Barcelona. Spain, 2 Nursing Department,
School of Medicine and Health Sciences, Universitat Internacional de Catalunya, Barcelona, Spain,
3 Palliative Care Service, Institut Català d’Oncologia, Barcelona, Spain, 4 School of Medicine and Health
Sciences, Universitat Internacional de Catalunya, Barcelona, Spain
*
abalaguer@uic.es
Abstract
Background
Research in the end-of-life context has explored the sense of dignity experienced by
patients with advanced disease, examining the factors associated with it. Whereas certain
perspectives regard dignity as an intrinsic quality, independent of external factors, in the
clinical setting it is generally equated with the person’s sense of autonomy and control, and
it appears to be related to patients’ quality of life. This study aims to explore the relationship
between perceiv ed dignity, autonomy and sense of control in patients at the end of life.
Methods
We conducted a systematic review and meta-ethnography using reciprocal translation and
line-of-argument synthesis. The search strategy used MeSH terms in combination with free-
text searching of the Pubmed, Web of Science, CINAHL, PsycINFO and Cochrane data-
bases, from their inception until 2015. This identified 186 articles, after excluding duplicates.
The inclusion criterion was primary qualitative studies in which dignity, autonomy and con-
trol at the end of life were explored. Studies were evaluated using the CASP guidelines.
Results
Twenty-one studies recording the experiences of 400 participants were identified. Three
themes emerged: a) dignity mediated by the loss of functionality, linked to the loss of con-
trol; b) dignity as identity; and c) autonomy as a determining factor of perceived dignity,
understood as the desire for control over the dying process and the desire for self-determi-
nation. We propose an explanatory model which highlights that those patients with an intrin-
sic sense of dignity maintained a positive vie w of themselves in the face of their illness.
Conclusion
This synthesis illustrates how dignity and autonomy are intertwi ned and can be perceived
as a multidimensional concept, one that is close to the notion of personal identity. The ability
PLOS ONE | DOI:10.1371/journal.pone.0151435 March 24, 2016 1/18
a11111
OPEN ACCESS
Citation: Rodríguez-Prat A, Monforte-Royo C, Porta-
Sales J, Escribano X, Balaguer A (2016) Patient
Perspectives of Dignity, Autonomy and Control at the
End of Life: Systematic Review and Meta-
Ethnography. PLoS ONE 11(3): e0151435.
doi:10.1371/journal.pone.0151435
Editor: Claudio Moretti, S.G.Battista Hospital, ITALY
Received: November 25, 2015
Accepted: February 28, 2016
Published: March 24, 2016
Copyright: © 2016 Rodríguez-Prat et al. This is an
open access article distributed under the terms of the
Creative Commons Attribution License, which permits
unrestricted use, distribution, and reproduction in any
medium, provided the original author and source are
credited.
Data Availability Statement: Data are all contained
within the paper and in its Supporting Information
files.
Funding: This study was supported by: the Junior
Faculty programme grant, cofinanced by L’Obra
Social “La Caixa” (AR):
http://www.uic.es/en/studies/
grants/becas-junior-faculty; the Instituto de Salud
Carlos III (grant number: PI14/00263) (CMR JPS AB):
http://www.eng.isciii.es/ISCIII/es/general/index.shtml;
Asociación Española Contra el Cáncer (aecc)-
Catalunya contra el Càncer – Barcelona (CMR JPS
AB): https://www.aecc.es/Nosotros/Dondeestamos/
Barcelona/Paginas/home.aspx
; WeCare Chair: End-
to regard dignity as an intrinsic quality has a positive impact on patients, and the design of
care strategies should take this into account.
Introduction
Safeguarding the dignity of patients at the end of life (EOL) has become a key objective of clinical
practice [
1–4]. Numerous studies have sought to clarify what is meant by dignity [4–11], to iden-
tify the variables associated with it [
12–15], to examine how it is perceived by patients, families,
and professionals [
2,15–19], and to explore ways of assessing and enhancing it [20–22].
Broadly speaking, there are two ways in which the notion of dignity is evoked [
6,7,23]. One
is to consider it as something intrinsic and ontological, what some authors refer to as basic dig-
nity. From this point of view, dignity is an irrevocable feature of personhood that does not
depend on, or vary, according to circumstances. The second perspective refers to what is called
dynamic dignity, that is, a personal quality that is related to people’s perception of themselves
and of the context in which they live. In the present study, dignity is considered to be a funda-
mentally intrinsic feature of the human individual [
11], although it is acknowledged that what
it entails in practice will depend on how patients see themselves and are seen by others, and
also on how the nature of the illness in question affects the person’s life and identity.
In the EOL context, another key issue is how the perception of dignity is mediated by the per-
son’s sense of autonomy or control. Although the two terms (autonomy and dignity) are sometimes
regarded as distinct concepts, this is not always thecaseintheEOLsetting.Indeed,alossofauton-
omy or control among patients is often interpreted as a loss of self, and of the sense of dignity [24].
Research conducted to date on the perception of dignity and autonomy has contributed to
an understanding of the needs and concerns of patients facing the EOL, and of the kind of care
they require in order to improve their wellbeing. However, although the terms autonomy and
dignity are frequently used in the literature [
25] the link between them remains ambiguous.
Paradoxically, dignity—especially when it is understood as autonomy—often appears as a key
argument in clinical, legal, and philosophical debates, where it may be invoked to support
opposing positions. A clear exampl e of this is how the notion of dignity may be used both to
support and challenge the act of euthanasia and assisted suicide, with opposing conclusions
being reached on the basis of the same principles [
23].
Given the lack of clarity and consensus that has been highlighted by many authors
[
2,4,5,9,23] the aim of this study was to explore, by means of a systematic review and interpre-
tative synthesis, the primary qualitative studies that have focused on autonomy and control as
mediators of the patient’s dignity at the EOL, as perceived by patients, families and health pro-
fessionals. The goal in doing so was to analyse how the relationship between autonomy and
dignity is interpreted in this context.
Methods
The search strategy combined MeSH terms with free-text searching and was applied to
Pubmed, Web of Science, CINAHL, PsycINFO and the Cochrane Library, from their start date
until November 2015. Several trials were required to achieve a sensitive and specific search
strategy (see
Table 1). The reference lists of the retrieved studies were also reviewed.
The inclusion criteria were as follows: primary qualitative studies in which dignity, auton-
omy and control at the end of life were explored (patients with an advanced disease and older
people), as perceived by patients themselves, by their relatives and/or by health professionals.
Studies involving paediatric samples were excluded. A total of 21 studies were included in th e
systematic review.
Fig 1 shows the process of study selection.
Patient Perspectives of Dignity, Autonomy and Control
PLOS ONE | DOI:10.1371/journal.pone.0151435 March 24, 2016 2/18
of-life care at the Universitat Internacional de
Catalunya and ALTIMA (AR CMR JPS AB):
http://
www.wecare.uic.es/home/
. The funders had no role in
study design, data collection and analysis, decision to
publish, or preparation of the manuscript.
Competing Interests: The authors have declared
that no competing interests exist.
A systematic review and interpretative synthesis was performed using the meta-ethnogra-
phy approach developed by Noblit and Hare [
26], This is an inductive method that involves
making constant comparisons of the concepts found in different qualitative studies in order to
enable a critical examination of a phenomenon and to extract common conclusions [ 26].
This study did not require ethical approval. Each of the included studies had been approved
by the corresponding local ethics committee.
Quality Assessment
The studies included were evaluated using the CASP guidelines for qualitative research (see
S1
Table
)[27], with the exception of three reports [28–30], whose design was not compatible with
these guidelines. However, we considered that all the studies could contribute to an understanding
of the phenomenon, and consequently none of the reports was excluded due to its quality [
31,32].
Findings
Description of the Studies Included
The studies selected had been conducted in the USA [
24,28,33–37], Canada [2,30,38,39], Swe-
den [
40,41], the UK [16,42, 43], China [44–46] and Austria [17]. Fifteen of the 21 studies dealt
exclusively with patients [
2,17,24,28,29,35,37–42,44–46], three exclusively with health profes-
sionals [
33,34,36], and three considered the views of patients, health professionals and family
members (see
Table 2)[16,30,43].
Overview of Themes
Three broad themes emerged from the synt hesis of studies. The first theme was dignity medi-
ated by the loss of functionality linked to the loss of control and of the value ascribed to one’s
life. The second theme was dignity as identity, specifically in relation to self-identity and the
impact of social factors. Finally, autonomy as the basis of dignity was understood as the desire
for control over the dying process and the desire for self-determination.
Table 3 indicates the
Table 1. Final search terms for the strategy applied in the databases.
Patient 1 Patient [MeSH]
2 Disease [MeSH]
3 Illness [MeSH]
41or2or3
End of life 5 Death [MeSH]
6 Palliative [Text Word]
7 End of life [Text Word]
8 Hospice [MeSH]
9 5 or 6 or 7 or 8
Die with dignity 10 Dignity [Text Word]
11 Dignified dying [Text Word]
12 Dignified death [Text Word]
13 Die with dignity [Text Word]
14 10 or 11 or 12 or 13
Autonomy 15 Control [MeSH]
16 Autonomy [MeSH]
17 Self-determination [MeSH]
18 15 or 16 or 17
Final strategy 19 4 and 9 and 14 and 18
doi:10.1371/journal.pone.0151435.t001
Patient Perspectives of Dignity, Autonomy and Control
PLOS ONE | DOI:10.1371/journal.pone.0151435 March 24, 2016 3/18
presence of these themes in each of the studies, while Table 4 presents some quotations that
represent each theme.
a) Dignity mediated by the loss of functionality. A key theme in the studies included was
the perception of dignity being diminished due to a loss of functionality. In most of the studies
this was reflected in the idea that the illness reduced control over one’s body and over daily
activities and circumstances. An emerging sub-theme here concerned the value that patients
ascribed to their life, which was often expressed in terms of quality of life
[
2,29,30,34,35,38,40,42,44–46].
Loss of control emerged both in relation to bodily functions and to daily activities and cir-
cumstances. A loss of control over one’s body (incontinence, loss of mobility, of cognitive func-
tions, etc.) was a central feature in 18 of the studies [
2,3,16,17,24,28–
30,33,35,36,38,40,42,45,46]. Some patients stated that diminished functionality undermined
their sense of dignity. Participants in many of the studies [
2,15,22,26–28,34,36,39,41–43,45]
Fig 1. Flowchart of search results. *Studies excluded because of method, participants or topic.
doi:10.1371/journal.pone.0151435.g001
Patient Perspectives of Dignity, Autonomy and Control
PLOS ONE | DOI:10.1371/journal.pone.0151435 March 24, 2016 4/18
described their inability to perform daily living activities, which was often related to feelings of
hopelessness and of being useless.
Table 2. Description of studies included in the review.
Author(s) Participants Geographical
location
Setting
Quill [
28] Patient with acute myelomonocytic leukaemia requesting
physician-assisted suicide
New York, USA Not specified
Bolmsjö [
40] Ten terminally-ill patients diagnosed with advanced cancer Lund, Sweden Lund University Hospital and a Lydiagarden
centre for rehabilitation of cancer patients
Kade [
29] Patient with non-Hodgkin lymphoma requesting physician-
assisted suicide
Not specified Not specified
Mesler and
Miller [
33]
Thirty-five nurses, 9 social workers, 5 bereavement and/or
volunteer coordinators, 3 nurse assistants, three executive
directors, two chaplains, 1 regional manager, 1 medical
director, and 1 physical therapist
USA 12 hospices
Lavery et al.
[
38]
Thirty-one men and 1 woman with HIV-1 or AIDS Ontario, Canada HIV Ontario Observational Database (HOOD), a
provincial epidemiological database
Chochinov [
30] Patient with lung cancer with metastases to the liver, brain and
adrenal glands.
Manitoba,
Canada
Not specified
Chochinov et al.
[
2]
Twenty-three men and 27 women with terminal cancer Manitoba,
Canada
Urban extended care hospital housing a
specialized unit for palliative care
Enes [
16] Eight terminally-ill patients (4 women and 4 men), 7 HPs (3
nurses, 1 doctor, 1 social worker, 1 chaplain and 1
physiotherapist) and 6 relatives (4 women and 2 men)
Surrey, UK Hospice inpatient unit
Ganzini et al.
[
34]
Thirty-five physicians (8 women and 27 men) Oregon, USA Not specified
Coyle and
Sculco [
35]
Seven terminally-ill patients with cancer who had expressed a
desire for hastened death
New York, USA Urban cancer research centre
Volker et al. [
36] Nine oncology advanced practice nurses (from 39 to 55 years
old)
Texas, USA Members of the Oncology Nursing Society
Volker et al. [
37] Seven people with advanced cancer diagnoses Texas, USA Recruited via oncology advanced practice
nurses
Mak and Elwyin
[
44]
Six advanced cancer patients who desired euthanasia while
receiving palliative care.
Hong Kong,
China
Unit followed the UK model ofmulti-disciplinary
team palliative care with a multi-disciplinary
team
Pearlman et al.
[
24]
Thirty-five patients who pursue a hastened death Washington, USA Patient advocacy organizations that counsel
persons interested in PAS,hospices and grief
counsellors
Chapple et al.
[
42]
Eighteen patients with terminal illness who discuss euthanasia
and physician-assisted suicide
Oxford, UK Interviews were contributions to the website
DIPEX (Personal Experiences of Health and
Illness;
www.dipex.org)
Franklin et al.
[
41]
Twelve people aged over 85 years (10 women and 2 men) Orebro, Sweden Not specified
Pleschberger
[
17]
Twenty residents of nursing homes Vienna, Austria Not specified
Nissim et al.
[
39]
Twenty-seven ambulatory patients aged 45–82 years with
advanced lung or gastrointestinal cancer
Toronto, Canada Outpatient clinics at a large cancer centre
Brown et al. [
43] Fourteen clinical nurses, 3 general practice nurses, 8 patients
with a diagnosis of a life-threatening illness and 5 carer
Scotland, UK Not specified
Ho et al. [
45] Sixteen older Chinese palliative care patients with terminal
cancer
Hong Kong,
China
Terminal cancer patients receiving palliative care
services in a major public hospital in Hong Kong
Ho et al. [
46] Eight men and 10 women (aged 44 to 92 years) diagnosed
with stage IV cancer, with a life expectancy of no more than
six months, living in the community either at home or in a long-
term-care institution
Hong Kong,
China
Patients enrolled in the out-patient palliative care
programme of a major public hospital
doi:10.1371/journal.pone.0151435.t002
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