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Death awareness, feelings of uncertainty, and hope in advanced lung cancer patients: Can they coexist?



Patients diagnosed with stage-IV lung cancer are forced to quickly transition from a cancer-free and perhaps healthy life to one of serious illness, uncertainty, and anticipation of a premature death. Health professionals may be too quick to label the patient as being in denial if they hope for healing. Hope may not be lost when reality is accepted. Studies have investigated what it is like to live with awareness of impending death. Using a patient case study this paper discusses the concepts of death awareness, uncertainty, and hope. The aim is to provide a deeper understanding of how these seemingly antithetical emotions can coexist to the benefit of the patient, and to provide clinicians with practical considerations for supporting patients' hope throughout their terminal illness.
© 2014 MA Healthcare Ltd
International Journal of Palliative Nursing 2014, Vol 20, No 6 271
Patients diagnosed with stage-IV lung cancer are forced to quickly
transition from a cancer-free and perhaps healthy life to one of serious
illness, uncertainty, and anticipation of a premature death. Health
professionals may be too quick to label the patient as being in denial if
they hope for healing. Hope may not be lost when reality is accepted.
Studies have investigated what it is like to live with awareness of
impending death. Using a patient case study this paper discusses the
concepts of death awareness, uncertainty, and hope. The aim is to
provide a deeper understanding of how these seemingly antithetical
emotions can coexist to the benet of the patient, and to provide
clinicians with practical considerations for supporting patients’ hope
throughout their terminal illness.
Key words: Death awareness l Uncertainy l Hope l Lung cancer
Patients with advanced lung cancer may
experience both uncertainty and hope.
Patient statements such as ‘I don’t know
how long this chemo is going to work’ and
‘denial gives me hope’ should prompt clinicians
to question whether they really understand what
the patient is communicating. It is important to
pay attention to the real meaning behind
patients’ words. With the ever-narrowing time
frame allotted to patients, clinicians may be too
quick to label patients as being in denial when
they say they are hoping for healing. Many
patients hope for healing because they are
uncertain about their future.
A natural coping tendency for patients facing
uncertainty is to want a positive treatment out-
come. If health professionals conduct business as
usual, they try to reduce the patient’s uncertainty
by improving their understanding of the facts.
But if they reduce or suppress the patient’s
feelings of uncertainty, they may also risk extin-
guishing a flicker of hope, and hope that
accompanies uncertainty may be positive. This
paper aims to provide a deeper understanding of
how the seemingly antithetical emotions of death
awareness, uncertainty, and hope can coexist to
the benet of the patient, and to provide clini-
cians with practical considerations for supporting
patients’ hope throughout their terminal illness.
Case report
Mrs S was 47 years old when she was diagnosed
with advanced lung cancer. She was happily
married with two daughters and four young
grandchildren. She had undergone a kidney
transplant 5 years earlier and almost died. Having
survived these many years post-transplant, she
and her husband were devastated on learning
that she had not only lung cancer but also bone
and brain metastases. She was informed that this
was incurable but that receiving palliative
therapy could prolong her life and provide her
with the best quality of life possible. Mrs S felt
confused and, once again, uncertain about life.
She felt an overwhelming sense of disbelief
because she thought that surviving a kidney
transplant would have increased her overall
chances for survival. She struggled with her diag-
nosis and stated that it was like a black hole full
of questions but offering no answers—at least no
acceptable answers. Treatment options were
discussed and initiated. After learning how to
control the side effects of chemotherapy, she
described her life as beginning to feel a bit more
normal. She spent time with her grandchildren,
enjoyed gardening, went on trips with her
husband, and overall felt very hopeful that she
might yet ‘beat this thing’.
Mrs S enjoyed almost a full year of stable
disease with minimal side effects before the
computerised tomography (CT) scan showed
progressive disease. The news of progression was
almost as devastating as the initial diagnosis, and
Mrs S and her husband found it difcult to com-
prehend. The physician explained that targeted
chemotherapy was available but that Mrs S rst
needed to be evaluated by the radiation oncolo-
gist for potential treatment regarding brain
metastases that had enlarged. Mrs S asked how
successful the radiation and chemotherapy would
Death awareness, feelings of
uncertainty, and hope in advanced
lung cancer patients: can they coexist?
Tami Borneman, Terry Irish, Rupinder Sidhu, Marianna Koczywas, Mihaela Cristea
Tami Borneman is
Oncology Clinical
Nurse Specialist and
Senior Research
Specialist; Terry Irish is
Chaplain; Rupinder
Sidhu is Licensed
Clinical Social Worker;
Marianna Koczywas is
Clinical Professor of
Medicine; Mihaela
Cristea is Clinical
Assistant Professor of
Medicine, City of Hope
National Medical
Center, 1500 East
Duarte Rd, Duarte, CA
91010, USA
Correspondence to:
Tami Borneman
272 International Journal of Palliative Nursing 2014, Vol 20, No 6
© 2014 MA Healthcare Ltd
be for her and how long the treatments would
work. She stated that facing the unknown was
very difcult, and the uncertainty of whether the
treatments would help and for how long made
her feel very vulnerable. This uncertainty was
also very difcult for her family, especially her
husband. Mrs S had spent many hours on the
internet obtaining information on survival statis-
tics, treatments, and nutrition. After the physician
provided information on radiation and targeted
therapy, Mrs S was reminded that the overall
goal of treatment was to lengthen her life with
the best quality of life possible, for however long
that would be. The goal was not cure.
Mrs S completed whole-brain radiation followed
by targeted chemotherapy. She did well on the
new treatment with minimal side effects, CT
scans showed stable disease, and the doctor was
very positive. She again began to feel hopeful and
enjoy life. Several months of good news provided
her with the condence to enquire about making
plans to travel. When asked about her optimistic
outlook, she acknowledged that things were
difficult, but she had decided to be positive
because to be otherwise was self-defeating.
Rather than thinking about having lung cancer
all of the time, she decided to put her emotions
and energies into hoping for a cure. Focusing on
the negative outcome was not helpful. She put
cancer out of her mind and expectantly hoped
for improvement each time she saw the doctor.
Mrs S stated that she believed God would pro-
vide healing but that she did not live in a bubble
of faith. She was ‘not walking in a Pollyanna
path without looking at reality’ and she stated
that ‘denial gives me hope’.
Two months later, Mrs S began to get
progressively short of breath and underwent
several thoracenteses to palliate the symptom.
The time interval between procedures became
shorter and she eventually required oxygen. She
also experienced excruciating multifactorial pain,
for which she was placed on an intravenous
infusion pump in addition to oral pain medica-
tions. Over the period of a month, she became
oxygen-dependent and virtually non-ambulatory,
required assistance to go to the bathroom, and
was admitted to the hospital three times for pain
control. Aware that she was rapidly deteriorating,
she reluctantly consented to hospice care but still
maintained hope that there would be another
treatment to prolong her life. Mrs S held on to
that hope until she died at home 1 month later.
Death awareness, uncertainty,
and hope
When patients are diagnosed with stage-IV lung
cancer, the transition from a normal life to
unwanted anticipation of a premature death
is very difficult. It can lead to feelings of
uncertainty, hope, and denial. Some of the more
difcult situations are when patients experience
positive or negative fluctuations in the illness
trajectory as a result of treatment or disease
progression. For those few who outlive their
prognosis, life is lived in a state of limbo or
uncertainty, and the illness becomes what Bern-
Klug (2004, p58) described as a ‘stuttering dying
trajectory’ instead of the usual downward illness
trajectory experienced by so many patients with
advanced lung cancer. Hutchings (2012, p50)
further described this as living with the ‘twin
mysteries of prognostication and death aware-
ness in the face of ambiguous dying’. The longer
one lives beyond the prognosis, the more aware-
ness of death becomes tangential. Life becomes
ambiguous and uncertain.
The pioneering work by Glaser and Strauss
(1965) in the area of death awareness is
important for understanding the foundation of
uncertainty and hope. Prompted by personal
experiences, Glaser and Strauss studied the dying
process in six hospitals in northern California.
They learnt that patients knew very little about
their impending death even though the staff were
usually aware. The goal of the study was to gain
a clear understanding of how people manage
and negotiate social change in the structural
context of the hospital. From their research,
Glaser and Strauss proposed four levels of death
awareness: closed awareness, suspicion aware-
ness, mutual-pretense awareness, and open
awareness (Box 1).
Closed awareness is when the patient is
unaware of his or her impending death, but
others are aware. Suspicion awareness occurs
Box 1. Levels of death awareness
Glaser and Strauss’s (1965) Theory of Death Awareness:
l Level 1: Closed awareness—patient is unaware, but others are aware
l Level 2: Suspicion awareness—patient suspects impending death and attempts to
get conrmation from others
l Level 3: Mutual-pretense awareness—everyone knows but no one talks about it
l Level 4: Open awareness—everyone knows and openly talks about it
Timmermans’ (1994) Contexts of Open Awareness:
l Context of suspended open awareness—explicit diagnosis and prognosis are
l Context of uncertain open awareness—negative information is disregarded and the
possibility of a good outcome is held on to
l Context of active open awareness—the patient and family accept the information and
respond accordingly
International Journal of Palliative Nursing 2014, Vol 20, No 6 273
© 2014 MA Healthcare Ltd
when patients suspect they are dying and try to
get confirmation from others. With mutual
pretence, all involved know that the patient is
dying but no one talks about it, pretending that
everything is normal. In open awareness, the
patient and others know and talk about the
patient’s impending death.
Timmermans (1994) believed that Glaser and
Strauss’s work neglected the emotional character-
istics of the patient’s behaviour. He maintained
that understanding and emotional reactions vary
between patients at different points in time,
based on their interpretation of the information
received. Timmermans further delineated three
gradations of open awareness: suspended, uncer-
tain, and active (Box 1). He pointed out that
patients will shift back and forth between these
gradations based on their interpretations of the
information provided.
Suspended open awareness
According to Timmermans (1994), in the context
of suspended open awareness the patient openly
disregards the information regarding diagnosis
and possibly prognosis in spite of being told
several times. There is no talking about impend-
ing death. There are three circumstances in
which this occurs. The rst is after hearing that
their condition is terminal: the patient cannot
assimilate the consequences of the information
and there is a sense of disbelief. The second
circumstance is when disbelief becomes perma-
nent: the patient questions the veracity of the
information that their condition is terminal and
may begin to make long-term plans or use
alternative methods of treatment. The final
circumstance is when the patient’s health status
progressively improves or deteriorates beyond
expectations: this can cause the patient to doubt
the nal outcome of the disease.
Mishel (1984) dened uncertainty in illness as
an inability on the part of the patient to create
meaning around illness-related events. Subjective
interpretation of the illness determines whether
the uncertainty is a threat or an opportunity, and
because the situation may change so may the
interpretation. This is especially hard for those
patients who have outlived their prognosis and
are in what Bern-Klug (2004) termed the stutter-
ing dying trajectory. When experiencing the ebb
and ow of impending death and hope, a family
member stated: ‘Occasionally, the resurgence of a
symptom reminds us that somewhere nearby [...]
mortality lurks in the shadows ... We briefly
revisit our end-of-life preparations and then park
our death awareness once again’ (Hutchings,
2012, p50).
Uncertain open awareness
According to Timmermans (1994), uncertain
open awareness occurs when the physician or
nurse explains the diagnosis or prognosis in a
manner that leaves just enough room for
uncertainty and therefore hope. Creen (2002,
p17) defined hope as having ‘the capacity to
embrace the reality of the individual’s suffering
without escaping from it (false hope) or being
suffocated by it (despair, helplessness, hopeless-
ness)’. McIntosh (1977) connected uncertainty
with hope in that patients would rather endure
uncertainty than know the truth, because with
uncertainty there could be hope. There is a differ-
ence between suspecting the truth and knowing
the truth. Suspecting the truth preserves hope
whereas knowing the truth may cause hope to be
lost. Timmermans (1994) suggested that it is this
linkage of uncertainty to hope that is at the heart
of uncertain open awareness. Patients will use
strategies to nd hope such as selectively looking
for and rationalising clues, asking questions for
which the answers remove any sense of hopeless-
ness, and comparing their situation with another
patient who is worse off. In their interviews with
27 patients who had advanced cancer, Lobb et al
(2013) found that patients minimised the impact
of the disease by comparing themselves with
other patients with advanced cancer.
Williams et al (2013) conducted research with
rural female caregivers in Canada caring for fam-
ily members with advanced cancer. A qualitative
aspect of the study included analysis of 342
journal entries from 24 participants over 3 years.
One of the topics participants were asked to
write journal entries about was what gave them
hope each day. A key comment made was ‘to
hope against hope’ even when there is no hope
for a cure. Hope is a choice. The authors
suggested that the phrase ‘hope against hope’
illustrates how caregivers persevere in finding
hope even when there are no substantiating facts
to support it. In line with Creen (2002) and
McIntosh (1977), Williams et al’s (2013) study
also showed how seemingly paradoxical
emotions can coexist.
Devik et al (2013) interviewed five patients
aged ≥75 to better understand their lived experi-
ence of having incurable cancer and living alone.
One of the subthemes that emerged was coping
with conflicting feelings. A female patient
described her life as living in constant tension
that came from trying to suppress doubts while
also trying to focus on the positives. This left her
neither happy nor sad, but she still persevered.
Copp (1997) also observed coexisting emotions
in 12 patients and their nurses dealing with
The transition
from a normal
life to
anticipation of
a premature
death is very
difcult. It can
lead to feelings
of uncertainty,
hope, and
274 International Journal of Palliative Nursing 2014, Vol 20, No 6
© 2014 MA Healthcare Ltd
impending death in a hospice. She learnt that
denial and acceptance of the patient’s health
condition fluctuated and were used as coping
strategies to both avoid threats and protect
relationships. Copp saw acceptance and denial
as interdependent strategies rather than
independent strategies.
Active open awareness
Returning to Timmermans (1994), the third form
of open awareness is active open awareness. This
occurs when the patient and all those involved no
longer hope for a cure. It does not mean that the
patient has no hope, but rather that there can be
peace of mind spiritually or in simply reecting
on their own lives. There is open dialogue about
the impending death and death-related matters.
However, Timmermans pointed out that the
disclosure of terminal information does not auto-
matically lead to active open awareness: it is how
patients emotionally cope with that information
that determines the context of open awareness.
According to Timmermans (1994), when a
patient receives a diagnosis of a life-threatening
illness, denitions of self and identity are under-
mined by this emotional crisis. In the authors’
experience, certainty does not need to be real: it
just needs to feel real to the patient. Neither does
certainty have to be logical or make sense to
anyone else for it to feel real to the patient.
Below, Mrs S’s case is discussed in light of
Timmermans’ contexts of open awareness.
Mrs S experienced all of Timmermans’ (1994)
three contexts of open awareness. When she was
rst told that she had advanced lung cancer and
that it was incurable, she not only felt uncertain
but also felt an overwhelming sense of disbelief.
Subsequently, after her side effects were control-
led and life seemed more normal, she began to
feel hopeful that she would beat the disease. This
is what Timmermans (1994) termed suspended
open awareness. Mrs S’s initial disbelief was
normal and it is understandable that full compre-
hension of the disclosure was unattainable at that
time. Once Mrs S moved beyond the initial dis-
belief, the improvement in her health facilitated
living her life as fully as possible. Timmermans
(1994) suggested that some patients begin to
doubt the outcome of their disease when
improvement in their health is experienced. Mrs
S never indicated that this was the case for her
either verbally or through her behaviour.
However, neither did she talk about her impend-
ing death, which also aligns with this context.
Suspended open awareness is usually transitory:
patients gradually move on to another kind of
open awareness (Timmermans, 1994).
The next context, uncertain open awareness, is
when patients tend to ignore negative information
and hold on to the possibility of a good outcome.
They are selective about what information they
hold on to. When clinicians provide clinical
information to patients, they may unintentionally
leave enough uncertainty to make the patient
perceive that there is some reason for hope. This
context is where Mrs S spent the majority of her
time. In returning to a ‘normal’ life afforded by
her improved and stable health, Mrs S was able
to set aside the negative information and prefer
hope to the certainty of death. Hope is both
essentially human and essential to human exist-
ence (Eliott and Olver, 2009). In interviewing
dying patients with cancer, Eliott and Olver
(2009) learnt that hope for a cure did not
preclude awareness and knowledge of death.
Patients receive treatment because they believe in
the potential of medical science. As medical
science promises potential cures for cancer, it is
perhaps not surprising that patients hope for a
cure even if the chance is vanishingly small. To
view a patient’s hope as denial is to ‘challenge or
negate the accumulative weight and legitimacy of
dominant representations of cancer, medical
science, and hope’ (Eliott and Olver, 2009, p619).
McIntosh (1977, p94) also connected feelings
of uncertainty to hope. He stated:
‘The proposition that patients would attempt
to cope with uncertainty by seeking to nd out
about their condition presupposed that they
would want to know what they had and what
the outlook was likely to be. Many did not.
They would rather suffer from uncertainty than
know the truth. They did so because for them,
to suffer the uncertainty was preferable to the
risk of losing their hope. Suspecting and know-
ing are entirely different things. So long as a
patient did not know, he could always retain
the hope that he might not have cancer. In other
words, with uncertainty there was hope. Those
patients who did not seek a true assessment of
their prognosis did so for the same reason that
patients did not seek conrmation of their diag-
nosis. As long as they were uncertain, there was
hope of a favorable outcome.
Mrs S was hoping for a cure or anything that
would prolong her life. Engaging in activities
with her husband and family gave her great joy,
so using ‘denial’ to give her hope was not an act
of denying death, but rather an act of afrming
life and what was important to her. If this kind
If health
business as
usual, they try
to reduce the
uncertainty ...
But if they
reduce or
suppress the
feelings of
they may
also risk
a icker of
hope ...
International Journal of Palliative Nursing 2014, Vol 20, No 6 275
© 2014 MA Healthcare Ltd
of hope is deemed unrealistic by clinicians or
others, there is a risk of devaluing what the
person holds dear.
As Mrs S transitioned into the third context,
active open awareness, she did not relinquish the
hope for more time, but she did sign on to hos-
pice (albeit grudgingly) and open talk about
things that needed to be done while she was still
here. Mrs S’s decision to enrol in hospice while
maintaining hope exemplies what Copp (1997)
termed ‘interdependent strategies’, Williams et al
(2013) called ‘hope against hope’, and Creen
(2002) defined as embracing reality without
escaping from it. Mrs S wanted to live until she
died. In 11 narrative interviews with patients
with cancer, Benzein et al (2001) learnt that there
was a difference between hoping for something,
such as a cure, and living in hope, which recon-
ciles life and death. Until that reconciliation
occurred, patients stated that they were both
doomed to live and doomed to die. They
belonged to both life and death, but felt they had
to live for as long as they were alive. Cassell
(2013, pxiv) stated that ‘Wellbeing is not just
quality of life [... it] is related to feelings of being
oneself (with oneself and in relation to others),
being able to live life as desired, and feeling able
to accomplish what is considered important.’
Until the very end, Mrs S’s balancing protected
her powerful need to be fully engaged in life
while preparing for the inevitable dying. She
provided living and, in the end, dying proof that
feelings of uncertainty and hope can indeed
coexist in patients with lung cancer in the midst
of death awareness.
Clinical practice considerations
Living with advanced lung cancer means living
with uncertainty. However, patients cling to the
hope circuitously provided by that uncertainty.
Box 2. Clinical practice considerations for supporting hope
Suggested clinician probes for assessing patient hope*:
l What is your understanding of your lung cancer and the course of your illness?
l In light of what you know about your illness, can you share with me how hopeful you are?
l What gives you hope?
l Does that source of hope help you to cope? Has this source given you hope in the past?
l Do you have someone to talk to?
l What gives you meaning in life? What sustains you?
l Do you feel a sense of purpose in your life?
l Are you uncertain about anything? What is your tolerance for uncertainty?
l How do you normally cope with uncertainty?
Suggested clinician considerations for supporting hope (as appropriate):
l Normalise the patient’s feelings
l Afrm values, do not deny hope
l Acknowledge hopes that have changed but also afrm that prior hopes are not worthless
l As health status declines, support the patient’s hopes for an acceptable death
l Facilitate the patient’s desire to leave a legacy
l Look for hope-giving clues, e.g. rationalising information, selective hearing of facts
l Facilitate navigation of the health-care system
l ‘Presence’ conveys true caring and support
l Provide clear and accurate information to the patient and team members
l Assist the patient in managing uncertainty
l Tailor amount of information, approach to hope, and prognosis needs to match the patient’s wishes
l Support the patient’s goals as appropriate
l Reinforce information provided to the patient by the physician
l Help the patient to assimilate medical information into their lives
*Nekolaichuk and Bruera (1998), Ersek and Cotter (2010), Reinke et al (2010), Stephenson and Berry (2014).
Timmermans (1994), Mishel (1999), Bern-Klug (2004), Curtis et al (2008), Chochinov et al (2009), Eliott and Olver
(2009), Maguire and Weiner (2009), Reinke et al (2010), Hansen et al (2012), Lobb et al (2013).
276 International Journal of Palliative Nursing 2014, Vol 20, No 6
© 2014 MA Healthcare Ltd
There are means by which clinicians can support
the patient’s hope in the midst of their uncer-
tainty (Box 2). Normalising the patient’s feelings
by actively listening is very important (Bern-Klug,
2004). When patients realise that they are not an
isolated case, it builds hope in the sense that they
are not alone. Another way to support hope is to
affirm the patient’s values (Eliott and Olver,
2009). Clinicians do not have to agree with a
patient’s hopes in order to affirm what they
value. The patient may be hoping for a cure that
will never occur, but their valuing of life and
family can be afrmed. It is also important to
acknowledge patient hopes that may have
changed to better align with their current situa-
tion while also afrming that their prior hopes
are not worthless. Hopes may change not only
with different stages of life but also as a result of
changing circumstances. As the patient’s health
status declines, clinicians can be instrumental in
supporting the patient’s hopes for an acceptable
death (Eliott and Olver, 2009).
A patient’s desire to leave a legacy is one of the
more tangible expressions of maintaining hope as
it afrms the patient’s presence and value in life
(Borneman and Brown-Saltzman, 2010). Leaving
a legacy provides hope in that it connects the
past, present, and future, which will continue
after the patient dies. It also provides a means for
the patient to feel valued as part of humanity,
having made a contribution from which others
can learn (Eliott and Olver, 2009).
Timmermans (1994) mentioned three different
strategies used by patients looking for hope. The
rst was using hope-giving clues such as rational-
ising information, selective hearing of facts, and
looking for alternative explanations. The second
was the polarity game, in which patients ask
questions about life and death scenarios related
to the illness that result in answers which provide
hope. For example, a patient may ask how much
time they have left to live, and the doctor may
reply ambiguously that they do not know. The
patient may take from this that they probably
have more time than they thought. The third
strategy is comparing oneself to others. When
patients compare themselves to other patients
who are worse off, this offers hope. Clinicians
can be aware of these tactics and look for oppor-
tunities to support the patient’s hopes or afrm
their values when appropriate.
Assisting patients to manage their uncertainty
and reduce their anxiety can also support hope.
Clinicians can help patients to navigate the
health-care system by answering questions
regarding treatment delays or waiting times for
results and by being ‘present’ (Maguire and
Weiner, 2009; Hansen et al, 2012). Presence
conveys true caring and support. Hansen et al
(2012) found that supporting patients through
relationships involves eye contact, supportive
communication, and active listening. Patients
need to share their uncertainties and have their
experiences believed. Clinicians can support
patients’ hopes by providing clear and accurate
information and then regulating the flow of
information and providing reassurance (Curtis
et al, 2008; Hansen et al, 2012).
Patients can be helped to manage their
uncertainty by reframing their situation (Reinke
et al, 2010). Clinicians can encourage patients to
live one day at a time, pace activities to match
energy levels, and set boundaries on uncertainty
to avoid it affecting every aspect of life
(Mishel, 1999).
Given that patients vary in what and how
much information they desire, it is helpful to
ascertain what they would like to know. The
clinician’s approach to providing hope and to
disclosing the prognosis should match the wishes
of the patient (Curtis et al, 2008). Curtis et al
(2008) reported that patient recommendations
for taking a more indirect approach to hope and
prognosis included being aware of the patient’s
emotional state, affirming non-abandonment,
addressing the patient’s fears, providing a clear
plan of action, and discussing prognosis
outcomes in relation to groups instead of individ-
uals. Recommendations to clinicians for taking a
more direct approach to hope and prognosis
included providing clear and full communication
about the disease trajectory. Knowledge was
power for these patients and gave them hope.
Reinke et al (2010) suggested that independent
and interdependent nursing activities and
provision of prognostic information can foster
hope. Independent activities that can foster hope
include assessing the patient’s meaning of hope,
focusing on quality of life, building relationships,
and assessing what the patient knows and fol-
lowing their lead in conversations to determine
their needs. Interdependent strategies include
knowing what the doctor has told the patient,
feeding information from the patient back to the
doctor, and continuing discussions with patients
after disclosure of bad news. These strategies
helped nurses to build a sense of trust with
patients and support their hope.
Patients living with advanced lung cancer, as with
many other advanced diseases, experience
uncertainty and hope. Uncertainty and hope can
coexist and, in fact, hope that comes from
The clinician’s
approach to
providing hope
and to
disclosing the
should match
the wishes of
the patient ...
International Journal of Palliative Nursing 2014, Vol 20, No 6 277
© 2014 MA Healthcare Ltd
uncertainty may be positive. When patients come
to accept the ultimate outcome of their disease,
hope is not necessarily lost but may be main-
tained. Clinicians have a vital role in supporting
patients’ hopes.
Declaration of interests
This work had no external sources of funding. The authors
have no conicts of interest to declare.
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... 3, patient) Uncertainty, psychological distress, and hope seemed to coexist throughout patients' journeys with terminal illness, especially for patients with PFS. 35 In fact, clinical uncertainty has always been a part of oncology medicine. With uncertain progressive directions of cancer, patients were very likely to disregard cancer as real or fail to create meanings around the illness to escape from overwhelming negative emotions. ...
... 42,43 Unpredictable progression not only brought a complex mix of emotions but also resulted in failure in the search for life meaning and brought difficulties in future planning. 35 When curative treatments were impossible, patients with no or ambiguous awareness might have fewer opportunities to address unresolved events, review their own life story, treasure moments with loved ones, and search for life meaning. On the contrary, knowing a diagnosis and prognosis may help patients plan additional treatment, anticipate complications, organize their lives, and plan for their own and their family's future. ...
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Background: Lung cancer, as a multistep and multifactorial disease, is among the most fatal cancers worldwide. As new therapies are developed and early screening increases, patients tend to experience progression-free survival (PFS) as a coexistence of living and dying simultaneously. Objective: The aim of this study was to explore the awareness context experienced by Chinese elderly patients and family members. Methods: Interviews were conducted with 20 interviewees, including 13 elderly patients with lung cancer and 7 caregivers that were recruited using purposive sampling. Semistructured, face-to-face, in-depth interviews were conducted using a qualitative descriptive approach. Results: Ambiguity was commonly experienced by patients with lung cancer with PFS. Three themes emerged from the data analysis: "ambiguity in cancer diagnosis," "ambiguity in prognostic awareness," and "ambiguity in identity." In this case, ambiguity refers to a situation or context in which patients are uncertain about whether there will be a recurrence of their cancer and when it might occur. Conclusions: The findings highlighted that patients experienced ambiguity in response to unclear diagnoses, uncertain prognoses, and identity crises during PFS. Implications for practice: Healthcare teams should be equipped with psychosocial knowledge and communication skills to manage ambiguity in diagnosis and prognosis for patients with PFS.
... This is probably not surprising, as the poor prognosis and fears about recurrence frequently associated with lung cancer (Hsieh et al., 2017) may influence how the patient responds to, and interprets both diagnosis and subsequent treatments (Brown et al., 2014). In addition, changes to treatment and potential disease progression may contribute to feelings of uncertainty and lack of control (Borneman et al., 2014). Unmet support needs from healthcare professionals have been associated with poorer QoL in other studies with lung cancer patients (Luszczynska et al., 2013); importantly, such support could help to mitigate some of the distress associated with uncertainty and psychological symptoms such as anxiety and depression (Liao et al., 2011). ...
... Similarly, meeting some informational needs may help to resolve psychological needs such as uncertainty and physical needs such as management of fatigue (Moghaddam et al., 2016). The likely interplay between unmet needs suggest that any intervention may need to take an interdisciplinary approach to improve well-being (Borneman et al., 2014). ...
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Introduction The aim of this review was to systematically examine the evidence on the relationship between quality of life (QoL) and unmet supportive care needs in patients with lung cancer. Methods Six databases were searched for studies published since 2007. Studies were included if they measured QoL using a standardised tool and examined its association with unmet supportive care needs in lung cancer patients. Results Six studies involving 562 patients were included. Nearly two thirds of the patients had been diagnosed with advanced cancer (Stage III or IV), and the majority had been diagnosed for less than 2 years. There was a negative association between QoL and unmet needs using two different measures (Supportive Care Needs Survey[SCNS] and Cancer Survivors Unmet Needs Survey [CaSUN]). In two studies, the relationship was limited to physical and/or psychological domains. Conclusions Unmet supportive care needs are associated with poorer QoL for people with lung cancer: The findings suggest that unmet physical and psychological needs may have the most impact on QoL and reflect the high symptom burden and psychological distress associated with lung cancer. Further work is needed to examine these relationships to identify the services and interventions that address the range of care needs across the disease trajectory.
... Nevertheless, Wisman and Heflick (2016) noted that hope may be more important than self-esteem in coping with death anxiety, which implies that information about COVID-19 treatments (hopeful messaging) would be more helpful for people infected with COVID-19 than information that enhances their self-esteem. Despite the importance of hope in regulating existential concerns, mortality salience can directly challenge hope arousal, as the ample evidence that reduced hope emerges for people who face certain death because of lung cancer (Borneman et al., 2014;Ozen et al., 2019) or experience loss of loved ones during the COVID-19 pandemic (Walsh, 2020) demonstrates. This suggests that thoughts of death stemming from the COVID-19 pandemic will generally reduce hope regarding the pandemic situation; more specifically, we postulate that thinking about their own eventual deaths will make people lose hopeful feelings about the pandemic, which might be associated with a pessimistic outlook on the pandemic situation and reduced motivations to take any actions to counter the circumstance. ...
... In short, thinking about one's own death dampens the positive effects of hope, which can serve as a coping mechanism in the pandemic context (Lazarus, 1999). In line with Lambert et al. (2014), this finding extends the traditional affect-free proposition of TMT, which posits that people tend to cognitively regulate death-related anxiety when facing their own deaths; it also confirm the findings of other studies highlighting the negative relationship between death arousal and hopeful feelings (Borneman et al., 2014;Walsh, 2020). The fact that this study approached TMT from a cognition-emotion integrative perspective makes this finding particularly important. ...
The COVID-19 pandemic has made death more salient to individuals, which has partly contributed to the amplification of hostility toward others who have different perspectives from oneself. Recognizing that the politicization of COVID-19 and the resulting polarization have become increasingly critical issues, this study investigates how death-related thinking and hope about the pandemic can affect hostility toward outgroups as well as how conservative and liberal media usages moderate the indirect effects of hope. An online survey experiment of people in the U.S. (N = 759) during the pandemic showed that death arousal reduced hope and that these low levels of hope exacerbated hostility toward outgroups in the pandemic context, confirming the positive impact of hope. Importantly, however, our study did not show that hope had a beneficial impact for heavy conservative media users.
... Receiving care at home was one way to keep hope of normality in life. Hope in parents with severe illness could be a way to affirm the value of family life and may also coexist with uncertainty and awareness of the illness (Borneman et al. 2014). In a previous study of mothers with cancer, participants stated that their illness also came with positive aspects, reminding them to live each day to the fullest and to be grateful for simple things (Loggers et al. 2019). ...
Objectives: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care. Methods: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis. Results: The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things - such as a period of ordinary family life. Significance of results: Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.
... Therefore, TMT deals with deathanxiety that is the general fear or anxiety related to the thought of one's own death ( Rosenblatt et al., 1989 ) which is different to death uncertainty that is focused on the lack of certainty about a particular situation or outcome typically observed in patients with advanced diseases ( Mishel, 1999 ). Death uncertainty has been found to interact with hope in advanced lung cancer patients where they hold onto hope indirectly such as leaving a legacy or holding onto values ( Borneman et al., 2014 ). Death uncertainty evolves over time ( Wright et al., 2009 ) whereas death-anxiety exists regardless of whether individuals are chronically ill or not ( Rosenblatt et al., 1989 ). ...
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COVID-19 is a global event that has impacted every individual on earth in some way and can be viewed as a mortality salience trigger. Although there were reports of increased nature exposure across the world, research is needed to understand whether the pandemic event impacted the underlying psychology of the human-nature nexus. Given the likelihood of pandemics and environmental challenges increasing in frequency in the future, there is a need for a deeper understanding of how pandemics impact individuals’ relationship with the natural environment in South Africa. To achieve this, the study applied psychological types (grouping individuals based on homogeneity) to explore potential shifts as human nature is neither fixed, nor universal. The study asked: Given the multiple significant impacts of COVID-19 on the African continent, how have perceptions and attitudes towards the natural environment changed within and between types of individuals from 2016 (pre COVID) to 2021 (COVID) in South Africa? In a longitudinal, quantitative study, separate samples 721 in 2016 and 665 in 2021 were obtained. Participants in 2021 were grouped into the same six types using the same criteria, for comparison with the 2016 data. The results showed limited potential for pandemics to act as catalysts for long-term individual change towards increased pro-environmentalism. The study confirmed the main tenets of Terror Management Theory that individuals tend to be driven to uphold worldviews when confronted with mortality. Furthermore, there was a reduced experience of personal control over outcomes that increased reliance on sources of control outside the self as an attempt to buffer against mortality concerns. The study contributes towards Terror Management Theory's application during pandemics, and how that relates to individual environmental attitudes and perceptions.
... It impacts on the spiritual well-being due to feelings of uncertainty, helplessness and fears about death. Thus, it results in patients experiencing set-backs in a chemotherapy treatment schedule (Borneman, Irish, Sidhu, Koczywas, & Cristea, 2014). ...
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Cancer-related fatigue has been shown to be a signifcant side effect that influences a person’s wellbeing, duringtreatment, and after treatment. It is recorded that cancer patients have also been shown experiencing spiritualdistress. The study aims to determine the connection between spiritual well-being and cancer-related fatigueamong patients suffering from breast cancer during chemotherapy treatment. 112 patients who were undergoingchemotherapy treatment were recruited in this study using a correlational design. The instruments used inassessing spiritual well-being and fatigue are Functional Assessment of Chronic Illness Therapy - Spirituality(FACIT-Sp) and FACIT-Fatigue Scales. Data were analyzed using the Spearman Correlation analysis. Meanspiritual well-being score was 35.91 (SD = 6.89), and the mean fatigue score was 33.04 (SD = 9.58). Therewere a moderate and signifcant correlation between fatigue scores and spiritual well-being (r = .364, p < 0.001).Breast cancer patients who had higher spiritual well-being that means they would alleviate fatigue symptoms.Therefore, nurses should consider that increasing spiritual well-being would reduce fatigue and vice versa.
... Medical and nursing professionals can identify the uncertainty, but patients must have effective coping methods to maximize efficacy of medical treatments. According to Borneman et al. (2014), a case report demonstrated that a woman struggled with her diagnosis and uncertainty and explained it as being similar to being stuck in a "black hole" of questions but being offered no acceptable answers. It is important for healthcare professionals to be aware of uncertainty and the impact it has on patients. ...
Chronic illness is an increasing concern in the United States as the Centers for Disease Control and Prevention reports that 50% of adults have at least one chronic illness. When individuals must adjust to chronic illness, they may experience uncertainty regarding the illness, prognosis, and symptoms. The purpose of this qualitative, phenomenological study was to explore the management strategies of uncertainty in chronic illness from patients’ perspectives. Merle Mishel’s uncertainty in illness theory was the framework used to explore the lives of individuals diagnosed and living with chronic illness. In-depth interviews were conducted with eight individuals who have chronic disease. Results revealed themes that individuals with chronic illness do experience uncertainty and that it impacts almost all aspects of their lives. Some of the themes identified were chronic illness, uncertainty, impact of uncertainty on daily living, coping or managing uncertainty, and communication from the healthcare team about uncertainty. The individuals expressed changes in daily activities and retraining their minds to accept their new normal. This study offers coping and management strategies that healthcare professionals can implement into treatment plans to improve the quality of life for individuals with uncertainty in chronic illness. The information produced from this study will aid healthcare providers in understanding the need to address the uncertainty at diagnoses and offer ways to assist patients in coping and managing uncertainty
The succession literature frames a leader’s reluctance to let go as the single largest deterrent to succession planning, and early literature pointed to the stronghold that mortality can have on letting go. The notion has not captured our continued curiosity, preventing a full understanding of the tensions and antecedents of family business succession. Most scholarship on letting go describes a quest for immortality and in this sense, ‘mortality’ has been misapplied and one dimensional. In an interdisciplinary boost to family business, we turn to palliative care, where it is believed that the acknowledgment of one’s mortality will facilitate letting go. We develop four typologies of letting go by combining elements of mortality awareness and planning that offers nuance and insights into long-held beliefs about this most vital and finite ‘soft issue’. We discuss emotion governance tools that help change the mortality awareness trajectory and support family business succession.
Context Older adults with advanced cancer face uncertainty related to their disease and treatment. Objective To evaluate the associations of uncertainty with psychological health and quality of life (QoL) in older adults with advanced cancer. Methods Secondary cross-sectional analysis of baseline data from a national clustered geriatric assessment trial. Patients ≥70 years with advanced cancer considering a new line of chemotherapy were recruited. We measured uncertainty using a modified 9-item Mishel Uncertainty in Illness Scale. Dependent variables included anxiety (Generalized Anxiety Disorder-7), depression (Generalized Depression Scale-15), distress (Distress Thermometer), QoL ([Functional Assessment of Cancer Therapy-General (FACT-G)], and emotional well-being (FACT-G subscale). We used multivariate linear regression analyses to evaluate the association of uncertainty with each dependent variable. We conducted a Partial Least Squares (PLS) analysis with a Variable Importance in Projection (VIP) plot to assess the contribution of individual variables to the model. Variables with a VIP <0.8 were considered less influential. Results We included 527 patients (median age: 76 years, range 70-96). In multivariate analyses, higher levels of uncertainty were significantly associated with greater anxiety (β=0.11, SE=0.04), depression (β=0.09, SE=0.02), and distress (β=0.12, SE=0.02), and lower QoL (β=-1.08, SE=0.11) and emotional well-being (β=-0.29, SE=0.03); the effect sizes were considered small. Uncertainty items related to disease and treatment were most strongly associated with psychological health and QoL scores (all VIP > 0.8). Conclusions Uncertainty among older patients with advanced cancer is associated with worse psychological health and QoL. Tailored uncertainty management strategies are warranted.
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Modern medical technology has transformed the way people live and the way they die. Today, in some instances the process of dying takes longer, due to more advanced medical treatment and therefore requires more sophisticated care than before. This contributes to the fact that terminally ill people are wrestling with the reality of death. This article endeavours to investigate the phenomenon of death from a biblical perspective and specifically attempts to answer questions such as ‘What is death?’, ‘Is there an intermediate state?’, and ‘What is “heaven” like?’ The article is written in such a way that it equips therapists with biblical information which can clearly be communicated to terminally ill Christian believers to assist them in coping with their trauma and uncertainties; it also intends to remove the sting of death and obtain more clarity on an existence beyond death.
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This study explored how patients diagnosed with advanced cancer cope with an uncertain disease trajectory. 27 patients with advanced cancer and with a prognosis of 12 months or more were recruited from the medical/radiation oncology and palliative care service at three metropolitan hospitals. A semistructured face-to-face interview was conducted. Interviews were audio-taped and transcribed verbatim. Data analysis was based on Grounded Theory using the constant comparison method. Results indicate that patients cope by avoidance, remaining positive, maintaining as normal a life as possible, minimising the impact of the disease on their daily lives, comparing themselves favourably with others in a similar situation and focusing on the outcome of treatment to control disease progression. Most did not wish to discuss prognosis or have detailed information on disease progression. Participants in this study represent an emerging cancer patient population who are receiving palliative therapies. While they have incurable cancer, they self-report as clinically well, they describe a good quality of life and the trajectory of their disease, while unpredictable, may extend over many months to years. Our study suggests that a flexible model of care is needed to support the needs of people who may still be receiving some form of chemotherapy and/or radiotherapy, and remain well. This model may need to take more of an intermittent approach, that is, as required for specific symptom management, rather than patients being linked continuously to a palliative care service for long periods of time.
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This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges. Twenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi's (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled 'hope against hope.' RESULTS: The journal entries highlighted: the caregivers' hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and 'hope against hope' describes how hope persists even when there is no hope for a cure. This research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers.
In this chapter, the research on uncertainty in chronic illness is reviewed and critiqued. Two theoretical perspectives of uncertainty that can be applied across the range of chronic illness are presented. Research on the causes and consequences of uncertainty in chronic illness are considered and critiqued. The review addresses research on adults and on parents of chronically ill children. Conclusions include the areas requiring further investigation.
Hope plays a critical role in human life and takes on a special meaning as death nears. Palliative care nurses, as witnesses to suffering and hope, must understand its complexities and be confident and sensitive in addressing their patients’ hope and hopelessness. Nurses must also ensure they have the necessary self-knowledge to identify, reflect on, and evaluate their own hopes, beliefs, and biases, and to identify how these factors influence the care they provide. This chapter explores the many dimensions of hope and identifies hope’s influence on health, quality of life, and adaptation to illness; nursing assessment, strategies, interventions, and models to foster, maintain, assess, and measure hope; “unrealistic hopefulness”; cultural considerations in the expression and maintenance of hope; hope in children and their parents; hope in older adults; family caregiver hope; and hope’s alteration through the dying process.
The healing tradition in Western medicine goes back to its Greek origins. What actually constitutes healing is poorly understood even in this first era of cure and advanced medical science. Sickness has usually been defined as the physical result of bodily disease. This is out of date in these times of chronic illness and when the problems of disability and aging are so common. This book uses a different definition: Persons are sick who cannot achieve their goals and purposes because of impairments of function from the molecular to the spiritual that they believe are in the province of medicine. Some impairment may be due to disease, but certainly not all. As the sick person has become the focus of medicine there have been repeated failed attempts to achieve both technologic and humanistic goals. This is wrong; there are not two goals there is only one ultimate goal, the well-being of the patient. All therapeutic interventions toward that end are exercises in healing. There are some impairments of function requiring high technology and others in which the personal actions of healers are most appropriate; proper balance is necessary. This book describes in depth what sickness is, what persons are, and how to understand function and its impairments. Healing skills and actions are explained and the nature of healing for sick and also suffering patients is detailed. The book concludes with a discussion of the moral basis of the patient-healer relationship and finally an understanding of goals.
Purpose/Objectives: To examine the theoretical congruency between uncertainty and spirituality at the end of life (EOL). Data Sources: Relevant empirical and theoretical articles using the key words spirituality, uncertainty, terminal illness, and similar derivatives were drawn from the databases of CINAHL®, MEDLINE®, PsycINFO, and SocINDEX. Data Synthesis: Spirituality and uncertainty were compared for theoretical congruency based on five general categories: prevalence, temporality, interpretation, quality, and directionality. The categories were drawn from the uncertainty literature and looked at the ability of spirituality and uncertainty to contribute to or detract from health. Conclusions: This article presents an innovative way of viewing how spirituality is experienced at the EOL. The likelihood that uncertainty and spirituality can coexist as a simultaneous and even blended construct that influences the EOL is supported and warrants additional exploration. Implications for Nursing: Health professionals must recognize the prevalence of spiritual uncertainty in the lives of their patients and understand the need to frequently assess for spiritual uncertainty. Specific recommendations are provided to guide professionals in addressing spiritual uncertainty with patients.
This paper reports on an aspect of the findings derived from a qualitative study and provides a prospective account of a defined period in the lives of 12 individuals dying in a hospice. The primary focus is on the patients' construction and management of their experiences in confronting impending death, and on their nurses' experiences in caring for these individuals as they died. The theoretical basis of the study was drawn mainly from a symbolic-interactionist perspective, within an interpretive interactionist framework. Unstructured interviews and participant observation were used as the primary methods of collecting data. Data from interviews were subsequently collated and coded, and comparative analyses between cases were performed. The detailed case study material provides insight into how patients and their nurses construct and manage their experiences in confronting impending death. For example, in interviews with patients whose death was imminent, and with their nurses, reference was often made to the ‘body’ as separate from the ‘self’. In particular, the nurses' constructions of a ‘body-person split’ were made by direct reference to the body as a separate entity from the personal self, in attempts to gauge the patient's ‘readiness to die’. This ‘readiness to die’ conceptual map appeared to be characterized by the following four modes: person ready, body not ready; person ready, body ready; person not ready, body ready; and person not ready, body not ready. These ‘body-person split’ and ‘readiness to die’ constructions provide an additional dimension to current theoretical conceptualizations about the dying process. Although theories on death and dying have previously focused on elements such as individuals' reactions, awareness, and time and duration of dying, the notion of separating body and self as a paradigm for understanding the manner and readiness of dying has not been raised and clearly requires further research. Thus, the fresh empirical material from the present study necessitates modification of current theories of dying and death.
Purpose: The aim of this study was to explore and understand the lived experience of older people living alone and suffering from incurable cancer in rural Norway. Methods and sample: Narrative interviews were conducted with five older people with incurable cancer (three women and two men, aged 71-79), receiving outpatient and life-prolonging chemotherapy and living alone in their homes in rural areas. A phenomenological hermeneutical approach was used to interpret the meaning of the lived experience. Key results: Four main themes were found: enduring by keeping hope alive, becoming aware that you are on your own, living up to expectations of being a good patient and being at risk of losing one's identity and value. Enduring this situation means struggling with terminal illness and facing death in a brave manner, and replacing former ways of living. The process of providing treatment may threaten dignity and cause additional distress. Conclusions: These results show a complex and comprehensive situation where physical symptoms and emotions are interwoven. Further the results describe how the ways of suffering caused by the manner in which care is delivered, suffering related to the cancer disease and existential suffering, may increase each other's impact. The social and rural context calls for special attention as the patients may lack recourses to gain sufficient care. Their comfort depends to a large extent on the health professionals' sensitivity.