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Findingmeaningdespiteanxietyoverlifeand
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Q U A LI T Y O F L I F E
Finding meaning despite anxiety over life and death in amyotrophic
lateral sclerosis patients
Anneli O Ozanne, Ulla H Graneheim and Susann Strang
Aim and objectives. To illuminate how people with amyotrophic lateral sclerosis (ALS) create meaning despite the disease.
Background. Coping strategies for living with ALS have already been investigated. However, there is a lack of studies on
how people with the disease find meaning and what helps and hinders this.
Design. A qualitative descriptive study.
Methods. Fourteen individual interviews were performed in Spring 2007. The interviews were analysed by qualitative
content analysis.
Results. Two themes emerged to illuminate the complex life situation of the interviewees: experiences of anxiety over life
and death and finding meaning despite the illness. It became clear that the uncertain journey towards death was more
frightened than death itself. Despite the incurable disease, which brought feelings of life and death anxiety, physical loss,
unfairness, guilt, shame and existential loneliness, they also found meaning in life, which strengthened their will to live.
Meaning was found through their family and friends, the act of giving and receiving help, the feeling of having a life of their
own and accepting the present. The perspective of life was transferred to a deeper view where material things and quarrels
were no longer in focus.
Conclusions. Despite the disease, the participants found meaning in life which strengthened their will to live.
Relevance to clinical practice. The balance between anxiety over life and death and finding meaning in life indicates the
importance of support through the whole disease process. Both disease-specific problems and existential questions must be
tackled. Nurses and other professionals need to be aware of the patients’ existential qualms. There is a need to focus on
what is important for the individual, and emphasis must be placed on where that person can find meaning.
Key words: amyotrophic lateral sclerosis, anxiety, meaning, motor neuron disease, nurse, nursing, quality of life, qualitative
content analysis, sense of coherence
Accepted for publication: 11 September 2012
Introduction
Background
Amyotrophic lateral sclerosis (ALS) is an incurable disease
with physical, psychosocial and existential consequences.
To help nurses to feel safe and secure when addressing the
issues associated with this disease, these aspects must be
highlighted in nursing research. This paper focuses on
existential issues.
Amyotrophic lateral sclerosis, also known as motor neuron
disease (MND), is a neurodegenerative disease that causes
impairment of the motor functions in the upper and lower
limbs and bulbar muscles. It leads to weakness, spasticity,
dysphagia, dysarthria and respiratory failure (Wijesekera &
Leigh 2009). Median survival is 20–48 months, although
Authors: Anneli O Ozanne, PhD, RN, Lecturer, Department of
Neurology, Institute of Neuroscience and Physiology, Sahlgrenska
University Hospital, Gothenburg; Ulla H Graneheim, PhD, RNT,
Associate Professor, Department of Nursing, Umeå University,
Umeå; Susann Strang, PhD, RN, Lecturer, Institute of Health and
Care Sciences, Sahlgrenska University Hospital, Gothenburg, Sweden
Correspondence: Anneli O Ozanne, Lecturer, Department of Neurology, Institute of Neuroscience and Physiology, Sahlgrenska University Hospital, S 413 45 Gothenburg, Sweden. Telephone: +4631
3423758.
E-mail: [email protected]
© 2013 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 2141–2149, doi: 10.1111/jocn.12071
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AO Ozanne et al.
10–20% of the patients survive longer than 10 years (Chio
et al. 2009). However, symptomatic treatment and multidisciplinary, supportive and palliative care are important to
improve quality of life (QoL) for both the patient and their
relatives and to help maintain the patient’s autonomy as
long as possible (Wijesekera & Leigh 2009).
Living with an incurable illness such as ALS may cause
thoughts and questions about physical, psychosocial and
existential issues. The consequences of ALS include a loss
of control for the patient (Foley et al. 2007, King et al.
2009, Olsson Ozanne et al. 2012, Whitehead et al. 2012).
Strategies such as denial, altering support strategies, controlling, optimism (King et al. 2009), engagement in social
activities (Hughes et al. 2005) and living in the present can
facilitate the devising of coping strategies (Gysels &
Higginson 2011, Olsson Ozanne et al. 2012). It might be
easier to find acceptance by focusing on what one can
achieve instead of what is impossible. Patients with ALS
may experience feelings of loss, breakdown of self and
denial, even though they also may feel some kind of optimism (Brown & Addington-Hall 2008). The unknown
future may create a feeling that it is meaningless to make
any plans (Hugel et al. 2006). The variability in prognoses,
the uncertainty over how much time they have left (Whitehead et al. 2012), and symptoms such as breathlessness can
cause anxiety (Gysels & Higginson 2011, Whitehead et al.
2012). Patients are afraid of what the future might hold for
them (Brown & Addington-Hall 2008, Gysels & Higginson
2011, Whitehead et al. 2012). Many people with ALS want
to die at home, despite their anxiety over approaching the
final stages of the disease and its uncertainties (Whitehead
et al. 2012).
When a person receives a diagnosis of an incurable disease, existential questions will probably arise. There is no
general definition of existential issues; a recent review
found 56 different definitions of existential suffering. However, issues that have been described as having an existential nature include finding meaning, loss of meaning in life,
a sense of connectedness, hope or hopelessness, a feeling of
loneliness, fear of being a burden, a sense of isolation and
fear of dying (Boston et al. 2011). In discussing questions
of life and the basic condition of being human, Yalom
(1980) focused on four key concepts of existential issues:
freedom, meaning, isolation and death (Yalom 1980).
The salutogenic viewpoint emphasises that a person is
not just healthy or sick, but rather there is a multidimensional continuum between health and ill-health. Sense of
coherence (SOC) is the core of the answer to the salutogenic question. It contains three components: comprehensibility, meaningfulness and manageability (Antonovsky 1987).
2142
The present study focuses on the second of these, meaningfulness, which implies that the person has something in life
that engages them and is important in both an emotional
and a cognitive sense (Antonovsky 1987).
There is growing evidence that it is possible to achieve
feelings of hope and meaning, despite a stressful situation,
also in palliative care (Milberg & Strang 2007). In a study
with ALS patients, it was found that they valued family, leisure and friends more than health compared with the general population (Fegg et al. 2010). Thus, it is important for
the nurses to support patient’s sense of meaning and alleviate pain and suffering (Deal 2011). It is known that if
nurses have greater awareness and knowledge of the existential and spiritual needs and desires of a patient, this will
help them to understand and interpret the patient’s care
needs (Boston et al. 2011). Further studies are needed to
increase the understanding of these patients’ existential life
questions. The aim of this study was therefore to illuminate
experiences of what helps and hinders people with ALS in
finding meaning in life.
Methods
Design
This study is a part of a larger project aimed at illuminating
the three aspects of SOC (manageability, meaningfulness
and comprehensibility) among people living with ALS. In a
previous study (Olsson Ozanne et al. 2012), we examined
the manageability of living with ALS among patients and
their next of kin. The present study is a qualitative descriptive study, based on individual interviews, using qualitative
content analysis to derive experiences of meaning among
people living with ALS.
Participants
The participants were all patients with probable or definite
ALS according to the El Escorial criteria (Brooks 1994) and
were treated by the ALS team at a hospital in south-western
Sweden. They were recruited from the participant base in a
previous study of well-being (Olsson et al. 2010b) The
inclusion criteria for the present study were as follows: having received the ALS diagnosis at least six months before
entry, absence of any other terminal diseases and the ability
to speak comprehensibly (although in the interviews, they
could also write individual words or use the letter analogy
to clarify ambiguities). Patients in a late terminal stage of
the disease with severe respiratory insufficiency or loss of
intelligible communication were excluded.
© 2013 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 2141–2149
Quality of life
Meaning despite anxiety in ALS patients
Of the 35 patients who had participated in the previous
study (Olsson et al. 2010b), 19 were eligible for the present
study. Maximum variation sampling was used (Patton
2002) with respect to gender, age, psychological background and physical function. Repetitions in the responses
were found after ten interviews, but to avoid loss of any
additional information, the number of interviews was
extended to fourteen (seven men and seven women). Participants were between 42–80 years of age (median =
675 years), they all lived at home, and their needs for help
in daily life ranged from minimal help to 24-hour attendance. Duration of the disease was between 2–13 years.
Data collection
Data were collected in spring 2007. The 14 individual
interviews were semistructured and conducted in person by
the first author (AO). Questions were asked concerning
meaningfulness, for example: ‘What gives you meaning
today?’ and ‘What do you experience as being especially
important in your life? Interviews lasted 20–83 minutes
(median = 48) and were conducted, according to participant preference, either in an undisturbed room at their
home or at the hospital. Interviews were tape recorded, and
notes were taken to support the verbal information.
Analysis
The interviews were transcribed verbatim by the first author
(AO), and the transcribed text was randomly double-checked
against the tape recordings by the last author (SS). The text
was subjected to qualitative content analysis, which systematically analyses written or verbal communication (Krippendorff 2004), focusing on subject and context and dealing
with similarities and differences between and within parts of
the text. The analysis was performed in several steps, according to Graneheim and Lundman (2004). First, the text was
divided into meaning units, with each meaning unit being
related to the same central content and context. The meaning
units were then condensed and labelled with codes. These
codes were sorted and abstracted into 11 subthemes, illuminating threads of meaning running through the codes.
Through a process of reflection and discussion, the authors
agreed on the subthemes. Arising from these perspectives, the
subthemes were abstracted into two themes, which emerged
during the analysis. To ensure that the themes and subthemes
were trustworthy, the analytic process involved a back and
forth movement between the whole text and its parts.
Ethical considerations
The study was approved by the Regional Ethics Review
Board in Gothenburg, Sweden (approval No. 297-05). The
participants received verbal and written information about
the study and their written consent was obtained.
Results
The results showed that people with ALS experienced existential issues that both facilitated and hindered the possibility to
find meaning in life. However, it was obvious that despite the
disease with all its consequences, they found meaning, which
strengthened their will to live. The first theme, experiences of
anxiety over life and death illuminated how painful feelings
and existential issues arose due to the disease and its consequences. The other theme, finding meaning despite the illness
illuminated how the participants found meaning in life despite
the incurable disease. The themes and subthemes are summarised in Table 1 illustrated by text and quotations below.
Experiences of anxiety over life and death
The uncertain journey towards death is more frightening
than death itself
In their daily lives, people with ALS could feel that the
journey to death and the way they would die was more
Table 1 Overview of the two themes experiences of anxiety over life and death and finding meaning despite the illness — along with their
subthemes
Themes
Subthemes
Experiences
of anxiety over
life and death
The uncertain
journey towards
death is more
frightening than
death itself
Family and friends
give strength
Finding meaning
despite the illness
© 2013 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 2141–2149
Anxiety over
death controls
one’s life
The physical loss
puts one’s whole
existence on hold
Bitterness grows
from feelings
of unfairness
Feelings of guilt
and shame
Giving and
receiving help
Having one’s own
life
Accepting the
present
Life perspectives
grow from
shallow to deep
Feelings of
existential
loneliness
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AO Ozanne et al.
frightening than death itself. Living with insecurity was
harder than knowing that one would die. Worry also arose
from not knowing how long the disease would take and if
it would be a fast or slow process. Each deterioration could
spark thoughts about how fast the decline would go and
what the next deterioration might be. Due to this fear of
not knowing what would happen, and what their suffering
would look like, the participants avoided thinking about
the future and the later gradations of the disease. They
wanted to live as long as possible, but at the same time,
they did not want to be too incapacitated. It was difficult
to feel happiness and meaning in life when they saw themselves as being a burden in the future, and they might feel
that their own existence was questioned:
But it is the questions around it all, that you can’t get an answer
for, if there are any drugs, that you don’t know how long it will
take.//That’s the scary thing. (Interviewee)
The physical loss puts one’s whole existence on hold
The interviewees appeared to feel that their physical loss
put their whole existence on hold. They were afraid and
felt that they were prisoners in their own bodies, which led
to feelings of lost content in life. There was a fear of losing
physical control and the ability to walk, communicate and
make oneself intelligible, despite being able to understand
everything. There was a disappointment in being dependent
on others. The days felt long, for those who lived an inactive life. There was also the risk of starting to think too
much, when there was nothing to do during the day. It
seemed that it could be difficult to find a meaningful content in daily life:
At the same time, I can tell you that I talked to my daughter this
weekend. Then I said that it is so tiresome during the day, I can’t
do anything. I have no hands, you know, and what the hell should
I do (laughing). It, it, the days become damn long. (Interviewee)
Problems with breathing and not knowing when these
problems would occur caused panic, as they were associated
with death. This issue caused self-containment, it was difficult to talk about, and it caused fear of sleeping as they might
not wake up. However, it also led to readiness to act for
what one could do in an upcoming, similar situation. The
misconception that death would come through choking was
a frightening one; conversely, being informed that the usual
outcome was falling asleep prior to death, due to carbon
dioxide retention, made it easier to manage the situation:
Bitterness grows from feelings of unfairness
Sometimes, it appeared that bitterness grew from feelings of
unfairness. The interviewees mentioned questions such as
why they had the disease, why they would always be
afflicted by it and whether they had done something evil.
They also described the thoughts that nothing was good
and that God did not exist. Some people lost their religious
belief due to the disease. Feelings of having done well in life
made it difficult to accept the disease:
… it’s like I said, it’s not the death itself I am afraid of but rather
And I got so angry about it, I thought it, what have I done, as is
the way I will die. (Interviewee)
(laughing).//What is this? There is nothing which can, anything
good, no God or nothing. It cannot be like this, I think I thought
Anxiety over death controls one’s life
Some of the interviewees felt that their lives were controlled
by their anxiety over death. Being afflicted with ALS could at
first lead to a feeling of hopelessness and a lack of vitality. Life
rends and thoughts of death took a big part in the daily life.
Hopelessness also arose because of the lack of a cure, and the
feeling that nothing had any meaning because they were going
to die anyway, or the belief that the course of the disease
would be distressing. This anxiety over death controlled their
lives and their condition. There was a risk that the anxiety
made the ill person feels bad, and just sees everything as dark
and negative. These feelings made it difficult to find meaning:
I think it has to do with whether you have death anxiety or not. If
you do, then there’s probably a big risk that you will feel bad and
see everything as dark and negative. (Interviewee)
Then I think it’s hopeless because there’s so much I want to do.
(Interviewee)
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so. (Interviewee)
Why does this happen? Will I be afflicted forever? What kind of
bad thing have I done, damn? …//…I sort of, I think I am worthy… to have it good (sad). (Interviewee)
Feelings of guilt and shame
Knowing that they were a reason for their families’ suffering caused feelings of guilt and was a heavy burden to
carry. These feelings also created a need for control. The
participants wanted to make things easier for their relatives;
some wanted to know where and how they should be buried, while some wrote wills and did other practical things
to make it easier for the people who would survive them. It
also appeared that the patients felt guilty that the burden of
confronting their relative’s death anxiety was too heavy for
them to meet.
Before accepting that they would need to get help, some
of the participants had chosen isolation due to shame over
© 2013 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 2141–2149
Quality of life
the disease and the associated physical handicap, as well as
resistance to getting sympathy from others:
I’ve told my friends that I’ve got ALS, I haven’t told people I
don’t associate with. I don’t think they have anything to do
with that. Maybe it’s stupid, but one get, when they talk
about how terrible it is, that’s why I haven’t told everybody.
(Interviewee)
Feelings of existential loneliness
The life-threatening symptoms of the disease led to a fear
of being physically alone. Some of the participants also
worried about others’ health, due to their own vulnerability; among other things, they were afraid that their relatives would die before them, as they were so dependent
on them.
Some interviewees also felt physical and existential
absence from others. Existential loneliness arose in cases
when the family found it difficult to talk with each other or
if the ill person felt that they were the one who had to support the rest of the family. Knowledge of leaving the family, especially if young children were involved, was very
painful and difficult to accept:
Then I can also say that due to the disease I am very scared that
my husband will die before me. He is my safety net now. That he
both can and does do so much if something happens to me at
home. So I can be at home. (Interviewee)
Finding meaning despite the illness
Family and friends give strength
Family and friends gave the participants both meaning and
strength through their presence and support. Young children and grandchildren particularly gave strength, meaning
and happiness. The participants described how after the disease developed, their families stood up for each other more
and did not take each other for granted. Quarrels over
small things were reduced, as they did not feel important
any more. Friends were also very important in the participants’ lives. Feelings of being accepted as an individual,
along with support from friends, helped them to find
meaning:
Yes, I can see that when I see them (the grandchildren), now that
then I forget that I have this (the disease). (Interviewee)
What do I think is important?//Having someone who cares about
you, that…one we don’t fight over small things, that we stand
up for each other. These are things one took for granted before.
(Interviewee)
© 2013 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 2141–2149
Meaning despite anxiety in ALS patients
Giving and receiving help
Meaning was also found in giving and receiving help. Help
from the outside was necessary to make life meaningful;
this could come from the family or from hospital, social
services or personal assistants. From this perspective, the
important factor which helped the participants to create
meaning was that they felt safe in knowing that they could
trust to receive the help they might need.
Their own altruism was also important. Feeling that they
were needed and that they could help other people, both
family and others, helped them to find meaning. Examples
of this included helping a life partner with psychological or
economic support or to informing and inspiring other people with ALS:
But I don’t think I would be so happy if I hadn’t had my assistants.
Probably, my life would have been a misery. Then I would have
just been lying there and not going out. My assistants make it possible for me to go out. (Interviewee)
So every day I survive, I contribute with some money so I do little utility. So that, and she is little younger than I, you know, so one doesn’t
know how long she, she can live as long as possible. (Interviewee)
Having one’s own life
Having their own lives was an important aspect of the participants’ search for meaning. An active life created a feeling of freedom, and meaning appeared when they could
fulfil their own interests. Spending time in nature created
both meaning and happiness.
Work gave strength and meaning, but it had also reduced
in value as it did not feel so important any more. People
who had had a rich life before illness found strength in this,
and experienced that it helped them to find meaning despite
the worsened situation:
We do funny things, eat well, drink well, go to different activities,
and that gives me meaning. (Interviewee)
Accepting the present
Acceptance of the present helped the participants to find
meaning. This acceptance represented their finding of
important things in life here and now. Often it was consolidated being near family and friends, but it also arose from
just being in the moment and accepting the fact of being
there.
Finding acceptance in the present did not mean that the
participants had to accept the disease but that accepting the
situation they lived in could make it easier to create meaning in life. Finding important things in life in the moment,
2145
AO Ozanne et al.
such as being close to their family, created the feeling that
life was worth living despite the deterioration in their
autonomy.
Even though meaning could be found in living in the
present, the participants searched for hope at the same
time. They hoped to become better that a curative treatment could be found, that the disease would stop or at least
that they would not become much worse. Another aspect
of hope was the wish to survive over a particular time, so
they could experience an important thing in life before they
died:
Anyway, I am glad that I can watch TV, listen to music, I can
make life passably fun. And don’t think that I’m ill other than that
I’m handicapped. (Interviewee)
You can live in hope, and maybe it will be good, maybe it will
stop, maybe I will not become much worse. (Interviewee)
Life perspectives grow from shallow to deep
The participants reported that their perspectives on life had
grown from shallow to deep. It was easier to live in the
present and not take out things in advance. It also gave
them the strength to fight, as they did not feel that their
lives were over yet. It seemed that it could sometimes be
easier to find happiness over small things, thought this did
not mean that the person did not feel sorrow over the situation. It was no longer so important to spend energy on
things that had previously seemed irritating, and material
things were no longer of much importance. The disease
brought another dimension of what was important in life:
… but sometimes I think that good, I am lucky to get another
dimension in life. (Interviewee)
I don’t make a fuss over small, over small things. (Interviewee)
Discussion
Our results show that patients with ALS experienced anxiety, stemming both from the journey towards death and
from death itself. Even though this anxiety played a part in
the participants’ lives, including experiences that the physical loss put their whole existence on hold, feelings of
unfairness, feelings of guilt and shame because of family
suffering and existential loneliness, they also found meaning
in life and could find a deeper life perspective of what was
really important to them.
The first theme experiences of anxiety over life and death
indicated that to a large extent the ALS patients’ experiences of fear concerned the way they would die rather than
death itself. They feared not knowing what would happen
2146
to them, what the next symptom would be, how and when
their respiration would be affected and so on; this caused
anxiety and inhibited their attempt to live in the present
and find calmness in their lives. Other studies have also
described this worry at every deterioration, and thoughts
about life until death (Lemoignan & Ells 2010, Gysels &
Higginson 2011). As Whitehead et al. (2012) showed it is
therefore important and to initiate advanced care planning
to reduce the patients’ worry. Multidisciplinary care is also
meaningful for ALS patients, as it might lead to bettermaintained QoL, improved care, better management of
symptoms and a reduction in both the number and length
of hospital admissions (Foley et al. 2012).
Other researchers have also found that fear of respiratory
distress causes anxiety, as it is associated with death (Gysels
& Higginson 2011). Some participants in our study were
afraid of choking, and they sometimes found it difficult to
talk about this. Fear of breathing difficulties could cause
fear of sleeping, due to the possibility that they might not
wake up. However, if they felt that they were informed
about the disease process, how the breath usually prepossess, they could manage the situation more easily. This
result also showed how important it is for there to be a
professional team around the patient, to provide both adequate information and adequate symptomatic treatment.
Other researchers have reported a lack of specific information on what services are available to help patients (O’Brien
et al. 2012).
The physical losses associated with ALS placed the participants’ whole existence on hold. They described the feeling of being a prisoner in their own body, and they were
afraid of losing physical control. They were disappointed
that they had to depend on other people. At the same time,
they felt loneliness in their situation, and that they missed
existential togetherness with their families. Yalom (1980)
states that existential loneliness is universal and impossible
to eliminate, and love is the compensation for the pain of
isolation (Yalom 1980). Our participants described existential isolation and loneliness as being problematic. This
partly depended on their own fear, shame and feeling that
their relatives were physically and existentially absent from
them, but the presence of family and to some extent healthcare personnel could also diminish the loneliness. This is in
good agreement with the core concept of Yalom (1980)
that existential isolation is one of basic challenge.
Feelings of unfairness appeared in relation to questions
about the existence of God, whether anything good still
existed and why they had developed the disease, especially
if they felt that they had done well in life. As Yalom (1980)
has pointed out, these kinds of questions often appear dur© 2013 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 2141–2149
Quality of life
ing an existential crisis, which can of course be triggered by
a disease such as ALS. Fegg et al. (2005) have also noted
that universalism is important among patients with ALS or
cancer in palliative care. Although our results indicate more
of a questioning of belief, they still deal with universalism.
This questioning might be related to the fact that Sweden is
a secularised country; another study among these patients
showed that religion was not very important in their lives
(Olsson et al. 2010a).
The participants experienced feelings of guilt over the
suffering that the disease caused their families. They tried
to prepare for their death and make it easier for those who
would survive them. Gysels and Higginson (2011) also
found that patients were concerned about the effects of
their illness on their family. However, even though our participants felt sorry for the suffering caused to their relatives,
they also found meaning and strength in having their family
around them. This gave them happiness and the families
became more important in their lives, an aspect which has
also been described in other studies (Olsson et al. 2010a,
Olsson Ozanne et al. 2012). The importance of family did
not only depend on the participants feeling that they found
meaning in being with them, but also on the worries that
they had about their families’ health due to their own vulnerability. This is not surprising, as patients such as these
are so exposed and so dependent on having trustworthy
people around them. Quarrels over small things faded
away, as they did not feel important any more. Friends
were also important to the participants. Feelings of being
accepted as an individual and support from friends helped
them to find meaning.
As shown earlier and from other results in the second
theme finding meaning despite the illness, it was obvious
that even though there were negative effects on the patients’
lives, including feelings of anxiety, unfairness and loneliness, they also gained meaning in their lives. Meaning was
found through their family, their friends, the act of giving
and receiving help, feeling that they had their own life and
accepting the present. The perspective of life was transferred from a more external view to a deeper view in which
material things and quarrels with one’s relations lost focus,
while the more meaningful aspects described previously
were given more space. The phenomena above can be
explained by response shift, in which internal standards,
values and conceptualisations of QoL change over the
course of the disease (Sprangers & Schwartz 1999).
Despite the incurable nature of the participants’ disease,
they found meaning in life which gave them strength and
the desire to live longer. These results are important in the
ongoing discussions about euthanasia and physician-assisted
© 2013 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 2141–2149
Meaning despite anxiety in ALS patients
suicide (PAS). In countries where it is legal to perform these
acts, such as the Netherlands, it has been shown that 20%
of patients with ALS prefer to take this option (Maessen
et al. 2010). It is likely that patients do not ask for euthanasia or PAS to the same extent in countries such as
Sweden where it is illegal. However, it has been found that
a stronger religious belief can make it easier to cope and to
avoid the desire for euthanasia or PAS (Kuhnlein et al.
2008, Maessen et al. 2009). Even though most of our
patients did not rate religion as very important (Olsson
et al. 2010a), they found meaning and they wanted to live.
Discussing existential questions with the patient and helping them to see what is important for them in life, supporting them and providing relevant information from ALS
teams, palliative teams and other important services might
help these patients to find safety, meaning and the will to
live instead of the desire to die.
Conclusion
This study indicates that despite the illness and all its consequences, people with ALS can create meaning in life with a
deeper life perspective of what is really important for them.
The life situation of our patients was complex, with anxiety
over both how to live and how to die. The uncertain journey towards death was more frightening than death itself.
However, meaning in life was found through family,
friends, the act of giving and receiving help, the feeling of
having one’s own life, acceptance of the present and a changed perspective on life. Existential issues play an important
part in the lives of these patients and hence need to be
raised. This study emphasises this need, along with the
importance of nurses and other staff having the understanding and courage to discuss these issues with their patients.
Relevance to clinical practice
To help a person with this kind of question, it is necessary for nurses and other people working with the
patient to have an awareness and knowledge of existential needs, as also was shown in another study (Boston
et al. 2011). Our study emphasises the importance of
existential issues as a part of these people’s lives. The life
situation of people with ALS is so complex that people
working with these patients must be prepared to give
physical, psychosocial, and existential support. It is therefore necessary to involve both ALS teams who are
specialists in the disease, and palliative teams who are
specialists in palliative care with a comprehensive view
over the whole person.
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AO Ozanne et al.
Contributions
Conflicts of interest
Study design: AO, UGH, SS; data collection and analysis:
AO, UGH, SS and manuscript preparation: AO, UGH, SS.
There was no conflict of interest in this study.
Funding
The study was supported by the Ulla-Carin Lindquist Foundation and the Foundation for Neurological Research.
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