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Hi I need help with a discussion post I will attach the article this is based on, please cite in APA thank you.Has anyone read a report of a qualitative study before reading the one in this chapter? Where did you encounter it? What can you tell us about it? The point of reading research reports at this point is to understand them and extract essential information. Appraisal will come later. Discuss the Why–How–What of one of the qualitative studies listed below and respond to the questions below:Why did the researchers think it was important to do this study?What did their study do that those other studies did not do
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Received: 8 March 2022
| Revised: 16 July 2022 | Accepted: 20 August 2022
DOI: 10.1111/jan.15432
ORIGINAL RESEARCH:
E M P I R I C A L R E S E A R C H – Q U A L I TAT I V E
Patients’ experiences and perceptions of dignity in end-of-life
care in emergency departments: A qualitative study
Celia Martí-García1
| Alba Fernández-Férez2
| Cayetano Fernández-Sola3,4
Rocío Pérez-Rodríguez5
| Ana Alejandra Esteban-Burgos6
|
3
3,4
José Manuel Hernández-Padilla
| José Granero-Molina
1
Department of Nursing, University of
Málaga, Málaga, Spain
2
Emergency Department, Hospital
Universitario Torrecárdenas, Almería,
Spain
3
Department of Nursing Science,
Physiotherapy and Medicine, University of
Almería, Spain
4
Faculty of Health Sciences, Universidad
Autónoma de Chile, Santiago, Chile
5
|
Abstract
Aims: To explore and understand the experiences of patients with advanced illness in
relation to dignity during end-of-life care in emergency departments.
Design: Qualitative study based on Gadamer’s hermeneutics.
Methods: Between September 2019 and February 2020, 16 in-depth interviews were
carried out with advanced illness patients who attended emergency departments.
The participants were informed priorly and signed informed consent. The data were
La Inmaculada’ Hospital, Almería, Spain
analysed using an inductive strategy for finding emerging themes. The Consolidated
Department of Nursing, University of
Granada, Granada, Spain
Criteria for Reporting Qualitative Research was used for writing the study’s report.
Correspondence
Cayetano Fernández-Sola, Despacho 1.16,
Edificio Ciencias de la Salud, Universidad
de Almería. 04009, Almería, Spain.
Email: [email protected]
partments. ‘Dignity as an individual’s attribute’ and ‘Acting with dignity: Dignity as a
6
Funding information
Ministerio de Asuntos Económicos y
Transformación Digital, Gobierno de
España, Grant/Award Number: FFI2016-
76927-P
Results: In the data analysis process, two main themes emerged that glean the experiences of patients in relation to dignity during end-of-life care in emergency debehavioural attribute’.
Conclusion: Patient dignity in end-of-life care is centred around the principle of control (of oneself, one’s death and one’s emotions). The strategies required for patients
to preserve their dignity can be somewhat incompatible with the dynamics and objectives of healthcare professionals who work in emergency departments.
Impact statement: The dignity of patients with advanced illness who attend emergency departments is a relevant issue that merits being addressed from the patients’
perspective. Participants have identified that dignity is a way of being and behaving
in the face of illness. Emergency departments need to respect end-of-life patients’
desires by supporting and accompanying them, avoiding therapeutic obstinacy. We
recommend care to be centred on patients’ well-being, to respect their autonomy and
decision-making processes, and to allow prompt referrals to palliative care services.
Patient or Public Contribution: Managers from the Emergency Departments participated in the study design and patients’ recruitment. Patients’ relatives were informed
about the study’s aim, and they contributed to the development of the interview
protocol.
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in
any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
© 2022 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.
J Adv Nurs. 2023;79:269–280.
wileyonlinelibrary.com/journal/jan
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MARTÍ-G ARCÍA et al.
KEYWORDS
advanced illness, dignity, emergency departments, end-of-life care, nursing, qualitative
research, hermeneutics
1
|
I NTRO D U C TI O N
depending on the service the patient is provided or the type of pathology they have (O’Sullivan et al., 2021). For example, the expe-
Patients with advanced illness (AI) attend the emergency depart-
rience of a family caregiver could be more positive when a cancer
ment (ED) relatively frequently. In fact, it is estimated that around
patient is attended to in hospital, whereas for a family member of a
70% of patients with AI go at least once during the last months
patient who does not have cancer, they might prefer to be attended
of their lives (Heymann et al., 2019). High incidences of mortality
to at home (Martí-García et al., 2020).
have been recorded amongst this group of patients in the week
Chochinov’s (2004) model of dignity-conserving care divides the
following their visit to the ED (Verhoef et al., 2020). The most fre-
phenomenon of dignity into three categories: illness-related con-
quent reasons for attending the ED are pain and dyspnoea, with
cerns, the patient’s dignity-conserving repertoire (preserving one’s
more than 75% of patients admitted as a consequence (Verhoef
individual role, leaving a legacy, self-esteem, hope, autonomy, accep-
et al., 2020). In developed countries, the number of end-of-life pa-
tance and resilience) and social dignity inventory (social factors that
tients attending the ED has increased due to the rise in the elderly
increase or decrease the the person’s sense of dignity). The phenom-
population (Mierendorf & Gidvani, 2014). The high frequency of
enon of dignity in ED has been explored from professionals’ point of
attending ED among patients with AI puts them in contact with
view, (Alqahtani & Mitchell, 2019; Díaz-Cortés et al., 2018), identify-
patients from technological environments that are highly dynamic
ing socio-environmental factors that contribute to the perception of
(Schneider et al., 2019) and depersonalized (O’Shay, 2022). This
loss of dignity (Fernández-Sola et al., 2017). However, there is a lack
particular type of contact could make patients with AI who at-
of research about how patients with AI who attend ED perceive their
tend ED more aware of their vulnerability (Muñoz-Terrón, 2021).
own dignity (Granero-Molina et al., 2016). In recent years, there has
Emergency situations at the end of life are an intense experience
been a rise in research about end-of-life care in EDs (McCallum
(Collier & Broom, 2021), that exacerbate the problems related to
et al., 2018). Nonetheless, a recent report suggest the need to align
these patients’ dignity (Rogmark & Lynøe, 2021; Ruíz-Fernández
research into end-of-life with the priorities of the patients, the public
et al., 2021). It is, therefore, vital to address the issue of end-of-life
and policies (Sallnow et al., 2022). The emergency health situation
care in ED (Fernández-S ola et al., 2018).
makes these patients more vulnerable (Muñoz-Terrón, 2021), which
creates a solid and vivid experience of dying that can exacerbate
2
|
BAC KG RO U N D
Dignity is a key element in end-of-life care (Viftrup et al., 2021).
It refers to a good death (Fernández-Sola et al., 2017), autonomy
(Rodríguez-Prat et al., 2016) and the fundamental values of quality
issues related to personal dignity.
3
|
TH E S T U DY
3.1 | Aim
care towards a person (Pols et al., 2018). The notion of dignity can
be summarized in two ways: Dignity as a basic and inherent element
The aim of this study was to explore and understand the experiences
of any human being or dignity as a dynamic element that depends on
of patients with AI in relation to dignity during end-of-life care in ED.
the context and the patient, whose individual autonomy is a key fac-
The research question was: What are the experiences of patients
tor (Horn & Kerasidou, 2016; Rodríguez-Prat et al., 2016). However,
with AI in relation to dignity during end-of-life care in ED?
the concept of dignity at the end-of-life remains a controversial topic
as its definition is influenced by cultural (Horn & Kerasidou, 2016),
religious, racial and geographical (Frost et al., 2011) factors. These
3.2 | Design
aspects are relevant because different conceptions can lead to different needs amongst patients with AI (Bovero et al., 2020; Horn &
A qualitative study based on Gadamer’s hermeneutic philosophy
Kerasidou, 2016). Even in the same cultural context, perspectives
(2013) was carried out. Although it is difficult to discuss end-of-life
can change depending on the person involved (Bovero et al., 2020).
in situations of AI, the researchers decided to consider their own
In fact, healthcare professionals themselves differ in their under-
pre-understanding alongside the narrated experiences to under-
standing of patient dignity, including physical, psychological, social
stand the phenomenon of dignity among people with AI who are at-
and spiritual aspects (Bovero et al., 2020). From the patient’s point
tended in ED. The study adhered to the phases proposed by Fleming
of view, aspects such as control, identity and autonomy are deter-
et al. (2003), translating Gadamer’s philosophy into a method. The
mining factors in safeguarding dignity (Rodríguez-Prat et al., 2016).
first step entails creating a research question consistent with herme-
The end-of-life process can be seen differently with varying nuances
neutic research (see previous section). Secondly, one must specify
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MARTÍ-G ARCÍA et al.
the researchers’ pre-understanding of the phenomenon. This pre-
(2) to have any type of cognitive impairment and (3) to have a diag-
understanding stemmed from previous experience in researching
nosed disorder related to depression or state of mind.
end-of-life care as well as clinical experience in ED. All of the re-
To recruit the participants, their data were obtained in the
searchers are nurses who have worked in ED at some point in their
ED where they were seen. Consequently, the interviewer con-
professional careers. Two researchers still work with patients with
tacted them to inform them of the study’s objectives and ask for
AI at the end of their lives (AFF, RPR). The rest of the researchers
consent. When the participants granted consent, the researcher
are currently university teachers with an academic understanding
organized a meeting to carry out the interview. Of the 21 pa-
of the topic. The researchers’ prior theoretical knowledge is based
tients who were invited to participated in the study, five declined
on Chochinov’s (2004) dignity-conserving model described in the
stating that they did not want to recall the experience (three of
previous section. This model was used as the basis for designing
them) or because their family members or caregivers were not in
a research project financed by the Spanish Government and the
agreement (two of them). Ultimately, a total of 16 patients with an
European Union (Fernández-Sola et al., 2018). In this study, pre-
average age of 73.44 years (68% male), the majority of whom had
understanding was contemplated alongside the data provided by
been diagnosed with cancer (93.75%), and all of whom were at-
the participants.
tended to in ED, accepted to participate voluntarily in the study.
The sociodemographic characteristics of the participants can be
found in Table 1.
3.3 | Participants and setting
The participants were recruited in various southeastern Spanish
3.4 | Data collection
hospitals: two general hospitals and one regional hospital. All the
hospitals have an ED that does not have a specific ED for AI or end-
The third stage of Fleming et al’s method (Fleming et al., 2003)
of-life patients. Purposive sampling was used to achieve maximum
is dialogue with the participants, an opportunity to challenge
heterogeneity in terms of gender and age.
our previous knowledge to reach a new level of understanding
The criteria for inclusion were as follows: (1) Patients with AI at-
(Fleming et al., 2022). The researchers reflected on the process
tended to by ED at least once in the 6 months prior to the study, (2)
and decided that the interviews should be conducted by authors
to be clinically stable enough to maintain a conversation and (3) to
working with patients (not academics). For data collection pur-
provide consent for participation. Exclusion criteria were as follows:
poses, in-d epth interviews were carried out between September
(1) To have suffered a personal loss in the year prior to the study,
2019 and February 2020 by two nurse researchers (A.F-F and
which could have affected bias due to being in a period of mourning,
R.P-R ) who had provided the patients with health care at home
TA B L E 1 Sociodemographic data of the participants
a
Participant
Sex
Age
Diagnosis
Profession
Year of
diagnosis
Nationality
Number of
children
Number of
visits to ED*
P-1
M
65
Gastric cancer
Retired
2010
Spanish
2
4
P-2
M
88
Prostate cancer
Retired
2016
Spanish
2
2
P-3
F
83
Colon cancer
Retired
2017
Spanish
3
1
P-4
M
83
Gastric cancer
Retired
2016
English
0
3
P-5
F
76
Bladder cancer
Retired
2017
Spanish
0
2
P-6
M
63
Lung cancer
Retired
2016
Spanish
3
1
P-7
F
77
Ovarian cancer
Retired
2013
Spanish
4
2
P-8
M
58
Lung cancer
Marble worker
2015
Spanish
2
4
P-9
M
72
Lung cancer
Retired
2012
Spanish
1
2
P-10
M
78
Liver cirrhosis
Retired
2012
Spanish
4
6
P-11
M
72
Colon cancer
Retired
2016
Spanish
1
2
P-12
M
83
Bladder cancer
Retired
2017
Spanish
2
1
P-13
M
73
Lung cancer
Retired
2015
Spanish
1
1
P-14
F
81
Cardia cancer
Retired
2018
Spanish
3
5
P-15
M
72
Melanoma
Artist
2016
Spanish
7
2
P-16
M
51
Stomach cancer
Construction
worker
2018
Spanish
1
6
Since advanced illness diagnosis.
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MARTÍ-G ARCÍA et al.
or in hospital with the purpose of avoiding unfamiliarity. The in-
2. Our pre-understanding was placed into a dialogue with the par-
terviews were carried out in the participants’ homes or a hospi-
ticipants’ accounts using the transcriptions. In this phase, all the
tal unit after having been discharged from the ED. The interviews
participants’ stories were juxtaposed to reach a fusion of horizons
followed a protocol (Table 2) that had been practised beforehand
between their points of view and our own (Fleming et al., 2003;
and piloted by two researchers who suggested changes to some
Fleming et al., 2022). For this to happen, each interview was ana-
questions for clarification purposes or to make them open-e nded.
lysed, and the most important quotations were chosen. These
Interviews lasted 45 min on average, and were recorded with the
quotations were assigned initial codes and when there were simi-
participants’ prior consent. When the researchers deemed that no
lar codes, they merged into ‘Units of meaning’, which also group
new information was being provided, they considered that data
themes that represent the wider picture. In this process, there is a
saturation had been reached and thus stopped the interviews and
back and forth between the quotations and the ‘whole’ (themes,
data collection.
overall vision), all whilst ensuring consistency. Each part gives
meaning to the whole and to understand each part, we need to
appreciate the whole. An example of this codification process can
3.5 | Ethical considerations
be found in Table 3. The researchers wrote down their reflections
on the codes and their meaning (Through the ATLAS.ti functions
This study was approved by the Andalusian Ethical Research
‘comment code’ and ‘memos’). Codification was carried out by
Coordinating Committee (Reference number FFI2016-76927-P). The
three researchers who reached a consensus on the codes and
participants were informed about the nature of the study in person
emerging themes.
and in writing, and they signed informed consent. Their participation
was voluntary, and full confidentiality and anonymity was guaranteed at all times in accordance with current legislation.
3.7 | Trustworthiness
The final stage of the method is to ensure trustworthiness of the
3.6 | Data analysis
study. Fleming et al. (2003) adhere to the criteria of Guba and
Lincoln (1994). Credibility: the researchers who carried out the in-
All the interviews were transcribed in a text document for posterior
terviews already knew the patients (health care at home or in hospi-
analysis, using ATLAS.ti software. The analysis was carried out ad-
tal), which can facilitate dialogue with the participants. Researcher
hering to Fleming et al.’s method (Fleming et al., 2003):
triangulation was used for decisions about the codification process,
and for data analysis and interpretation. The researchers elaborated
1. During data collection and transcription, the researchers ob-
a reflexive diary in which they stated how their values and pre-
tained a spontaneous understanding of what the participants
understanding could affect the decisions made in each phase of the
were saying. To obtain the whole picture (Gadamer, 2013),
research process (Fleming et al., 2003). In line with the hermeneutic
an open reading based on the participants’ experiences was
method, the views of the researchers were used to generate themes
carried out by the researchers in charge of analysis. During
so that the data could be integrated into a cohesive whole. Due to
this phase, the researchers wrote memoranda including pre-
the participants’ clinical situation, transcripts were not sent back for
analytical intuitions and reflexions.
them to comment on the data analysis. The Consolidated Criteria for
Phase
Matter
Content/ example questions
Introduction
Purpose
The belief that their experiences provide
information that should be known
Objectives
To carry out research to understand these
experiences
Opening
General introductory
question
Could you tell me about your experience in
emergency services? Why did you go?
Development
Specific questions
What does the word ‘dignity’ mean to you?
How do you maintain or conserve your dignity
when you attend the ED with an advanced
illness?
Closing
Final question
Would you like to add anything else in relation to
this topic?
Thanks
We would like to thank you for your time. We
remind you that your statement is of great
value to us
TA B L E 2 Interview protocol
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MARTÍ-G ARCÍA et al.
Reporting Qualitative Research (Tong et al., 2007) (Supplementary
they could leave to their family. From this perspective, to conserve
file 1) were followed when producing the manuscript.
dignity, it is enough just ‘to be’ without any need ‘to do’ anything
else.
4
FI N D I N G S
|
Dignity is the only thing that I can leave to my family;
honour… is the most important thing in my life, (…). I
Two main themes and four subthemes grouping 16 units of mean-
can’t sell that for anything in the world. To conserve it
ing were developed from the data analysis. They helped explore and
I don’t do anything, I’m just loyal to who I am. I don’t
understand the experiences of patients with AI in relation to dignity
do anything (P8).
during end-of-life care in ED (Table 4).
TA B L E 4 Themes, subthemes and units of meaning
4.1 | Theme 1. Dignity as an individual’s attribute
This theme refers to the way in which the participants faced their
Theme
Subtheme
Units of meaning
Dignity as an
individual’s
attribute.
Dignity as well-
deserved respect
and freedom to
decide
Invaluable legacy
situation, accepting the calm and rational reality of it and maintaining their dignity intact. ‘Dignity is surrendering to the time
you have left…to what it offers you’ (P10). Dignity was under-
Developing one’s own
potential and doing
good
Well-deserved respectful
treatment
Freedom to decide
stood as an individual’s attribute, something that you are owed
Deciding the moment and
time
(respect, freedom). The participants also understood it as an attitude towards life, adversity and death. They identified dignity as
Defending the right to a
dignified death
a way of coping characterized by hope, satisfaction with life and
acceptance of death.
Not fearing death
Overcoming the fear
of death to feel
Managing time
dignified in the last
Being strong
stages of life
Maintaining hope
When the time comes, I will get the family together
and we will have a glass of wine before they sedate
me (P1).
Living a fulfilling life
4.1.1 | Subtheme 1. Dignity as well-deserved
respect and freedom to decide
The participants stated that dignity was an inherent and invaluable
Acting with
dignity:
Dignity as a
behavioural
attribute
Living life until the
end… also in ED
Keeping up with daily
routines
Doing special things
A mental activity to
maintain dignity
Reminiscing about the
past
Reminiscing about one’s
youth
part of a person, that must be conserved above all else and that transcends our own existence. They related dignity to honour and the
Maintaining a sense of
humour
most important human attribute. With clear Kantian overtones, they
defined dignity as an invaluable legacy, a non-economic wealth that
TA B L E 3 Example of the analytical process of the transcriptions (from the quotation to the theme)
Quote
Initial codes
Units of meaning
Subtheme
Theme
I’m not desperate, I’m not scared. It’s much
better to live without fear. I hope to
manage the time I have left well. There
are many things I can’t do but I can talk
to my loved ones and hold their hands.
I’m not afraid (P 11)
Not being afraid
Managing time well
Talking Holding
hands
Not fearing death
Managing time
Overcoming the fear
of death to feel
dignified in the last
stages of life
Dignity as an
individual’s
attribute
And when she (his wife) visits me and she
comes to sit with me for a while, we get
to talking and then, we start reminiscing
about our youth or what we are going to
do when we get home (P5)
Visits from a family
member Talking to
a family member
Talking about
household routines
Reminiscing about
the past
Reminiscing about
the past Keeping
up with daily
routines
A mental activity to
maintain dignity
Acting with dignity.
Dignity as a
behavioural
attribute
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MARTÍ-G ARCÍA et al.
The second you don’t have dignity, you basically don’t
Now I just hang on, I don’t die because I have some
have anything. Awareness and dignity are the most
physical strength. It doesn’t make sense to wait until I
important things in a person for me (P15).
don’t anymore. I don’t want to be obfuscated with morphine. (I don’t want) a priest or palliative care. I want to
Some participants expressed an idea of developing one’s own potential, in which dignity is a characteristic that makes them a better
decide. Why does someone think they have the right to
save you when you don’t want to be saved? (P6).
person, contributing to gaining the respect of others. For these participants, being dignified meant relinquishing the material to share or
One participant told us about his experience, relating how some
help in an effort to be good and thus be well regarded and respected
medical protocols in ED and therapeutic obstinacy can cause suffer-
by others.
ing. If the objective of medical care is to keep the body going until one
loses mental capacity, the patient can feel that they are being forced
If I can’t give it my all, I give what I can, trying to help
to fully deteriorate, to be physically consumed to the point of losing
as much as possible (P16).
consciousness.
Having dignity is being able to say, ‘I’ve done things
The doctor comes and tells me to hang on in there be-
right with these people’. It’s being honest, telling the
cause I’m still of sound mind. But that’s exactly why I
truth and being a person that people will speak well
want to go now. I don’t want to wait until I’m fully con-
of and respect (P7).
sumed and have lost consciousness. I told the doctors
that we should just leave it, that it’s useless. But they in-
For other participants, dignity was associated with reciprocal, respectful treatment that one deserves, just for being human. It is identi-
sisted I carry on because it was protocol. What the hell
do I care about the protocol if I’m going to die? (P12).
fied with manners and mutual respect. This perspective of dignity was
seen as intrinsic, as an attribute of behaviour that must be mutual. It
This desire for autonomy was recognized as a right that allows the
complemented the pre-understanding of the researchers who tended
patient to die in a ‘dignified’ way, which includes being able to make de-
to see it as something external that is owed to patients by the health-
cisions about when and how to do so. Some participants talked about
care professionals.
how they became activists in defending the right to a dignified death.
Dignity is when people are polite to you and treat you
What I want is to be able to decide, it is a right. One
well, (…) with respect. I don’t lack respect to anyone
must decide when one is going to die. And you have
so I want the same treatment. (P9).
to do it with a smile on your face. (P1).
Dignity is respecting each other with manners and
Over the last few months, when I’ve had the strength,
common sense. (P14).
I’ve taken out my laptop and sent letters to members
of parliament in favour of regulating euthanasia and a
According to the participants, one of the characteristics of dig-
dignified death (P6).
nity was personal freedom and autonomy when making decisions
in everyday life. However, they also associated it with capacity; the
ability to do what you desire and execute a decision that has been
taken freely.
4.1.2 | Subtheme 2. Overcoming the fear of death
to feel dignified in the last stages of life
Dignity is the ability to make decisions, be autonomous
Dignity also implies having emotional control through which the pa-
and say, ‘now I feel like going there’ and to be able to go.
tient is capable of overcoming their fear of death. This helps them to
I feel like doing this and I’m able to do it. (P10).
focus on managing the time that they have left. This idea reinforces
some previous ideas about dignity such as ‘perspectives for conserv-
In line with dignity equating freedom, the participants included the
ing dignity’, one of the categories of the theoretical framework.
importance of freedom to make a decision about the time and mode
of death, highlighting that third parties should not take measures or try
It’s much better to live without fear. I hope to manage
to influence them to prolong their lives. Some participants associated
the time that I have left well. There are lots of things
palliative sedation with a loss of alertness and cognitive capacity that
that I can’t do but I can speak to my loved ones and
they do not wish for themselves. They also considered that palliative
hold their hands. I’m not afraid (P11).
care or religious services deny them the right to make decisions and
they do not welcome the unsolicited attempts to save a life that cannot
be saved.
This time management could involve putting one’s life on hold and
being fully aware that it is ending. It is a time of peace that culminates
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MARTÍ-G ARCÍA et al.
in accepting finitude itself. One participant used a literary device to
affection to their loved ones, the day to day, self-care, sense of hu-
explain his feelings.
mour etc. The sense of autonomy referred to in the previous theme
allows them to maintain their dignity in the small details of daily life.
Over the last year, I’ve had to put my life on hold. As
Cortázar said, ‘there is nothing left to do, the match is
extinguished’. Well, in my case, the match is already
burning my fingers (P13).
4.2.1 | Subtheme 1. Living life until the end…, also
in the ED
Emotional control could also imply that the patient has the percep-
One way in which the participants acknowledged maintaining their
tion of needing to remain strong and determined to be able to face the
dignity was to continue being the same person. They stated that
situation. Some of the participants identified dignity as not giving up
they make an effort to continue with their routines in their means.
in the face of death, being strong, and taking the advice that they had
They do everything possible to minimize the effect of their illness on
given their predecessors in the past.
their daily lives.
I used to say to my father, ‘Dad, fucking hell, you need balls
I can’t do much more than this. I get up in the morning
even to die, you’ve been so strong your whole life, don’t
and do what I’ve always done, take a book, read it and
give up now’. So how can I let myself give up now? (P8).
not much else. As I know I can’t do more than that, I
simply can’t. (P13).
This acceptance and resilience do not exclude the hope of getting better. Some participants turn to their faith to ask for ‘strength’
and an improvement that would allow them to leave the ED or even
When you’re well, you don’t remember that you’re ill.
a ‘pact’ to gain the necessary time to attend or witness important
The other day I went out with my daughter and sister
family events.
and we spent all day out and about, eating, I had such
a great time. (P1).
I couldn’t breathe properly and now I can. I don’t know.
I tell the Virgin Mary: ‘strength, Virgin, strength’. My
Virgin helps me so that I can go home. (P7).
Staying true to oneself and maintaining self-image is not just achieved
through keeping up with routines but also on special occasions, by doing
things that are out of the ordinary that defy one’s own limits.
The truth is that I would love to get a little better because my granddaughter is getting married in October
A few months ago, I went kayaking in the Cabo de
and I say: ‘Please God, let me see my granddaughter’.
Gata National Park and I saw the ‘Mermaid’s Reef’
Sometimes I think: ‘If I can’t attend on my own two
from the water (…). I was as happy as a pig in mud. (P6).
feet, they can take me in a wheelchair’ (P3).
We made the most of my wife’s birthday, we celeThey also alluded to how having lived a dignified life and felt that
brated it on 14th April. It is a tradition we have. The
they had fulfilled their purpose allowed them to feel dignified at the
only thing is that I was full of pus, a side effect of the
time of death. The prospect of living a fulfilled life usually comforts
medication. (P5).
patients, but our participants also stated that when a person can see
themself dying, it also provides peace of mind to know that they have
fulfilled their life.
Even frequent visits to ED are integrated into their lives, which is an
inevitable consequence of living with AI. For some, normalizing visits
to ED as part of their daily routines actually enabled them to avoid
I feel fulfilled as a person. I have my son, my grand-
suffering, thus preferring to go to hospital than to suffer.
daughter. I was a rocker for a long time. I’ve also been
a flamenco fan because music is really important to
I don’t want to suffer. If I have to come every few days
me and, in general, I think I’ve lived to the full, I’m not
in order not to suffer, I prefer to normalize it as some-
afraid of death (P15).
thing I have to do today (P4).
4.2 | Theme 2. Acting with dignity. Dignity as a
behavioural attribute
4.2.2 | Subtheme 2. A mental activity to
maintain dignity
This theme refers to the different ways in which the patients behave
The subtheme relates to the psychological resources that the par-
to protect their dignity. This includes having a good attitude, showing
ticipants use to maintain their dignity. One of them is remembering
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the past, either through talking with their partner or through think-
who feel alive is based on a notion of autonomy that recognizes the
ing about it themselves as a way of distracting themselves.
shared vulnerability of those who provide care and those who are
being cared for (Muñoz-Terrón, 2021).
When she (his wife) comes in, it’s cold outside and
The right to privacy and respect are other important attributes
she comes towards me, we start a conversation about
related to dignity, which have consequences during end-of-life care
something and then we get to talking and reminisce
(Hemati et al., 2016). This respect is not compatible with the at-
about our youth. (P5).
tempts of healthcare professionals to persuade patients to make a
particular decision (Weber et al., 2017). For example, in countries in
which current legislation supports assisted dying, the patient has the
Now, when I’m about to think about sad things, I
right to be informed of their different options. This should be done
switch mindset and say ‘OK, come on, let’s think
by a qualified professional who considers the individual intentions
about what I did when I was younger’. (P10).
of the patient and is able to present the advantages and disadvantages of making a particular decision in an objective way (Zhou &
Other participants highlighted keeping a good sense of humour in
Shelton, 2020). In fact, the participants referred to rejecting mea-
spite of the circumstances and the impact that it can have. Th
