Content uploaded by Tami Borneman
Author content
All content in this area was uploaded by Tami Borneman on Jul 25, 2014
Content may be subject to copyright.
© 2014 MA Healthcare Ltd
International Journal of Palliative Nursing 2014, Vol 20, No 6 271
Abstract
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 benet 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 benet 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 difcult 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
Discussion
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
tborneman@coh.org
272 International Journal of Palliative Nursing 2014, Vol 20, No 6
Discussion
© 2014 MA Healthcare Ltd
be for her and how long the treatments would
work. She stated that facing the unknown was
very difcult, and the uncertainty of whether the
treatments would help and for how long made
her feel very vulnerable. This uncertainty was
also very difcult 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 condence 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
difcult 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 conrmation 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
disregarded
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
Discussion
© 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) dened 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
unwanted
anticipation of
a premature
death is very
difcult. It can
lead to feelings
of uncertainty,
hope, and
denial.❜
274 International Journal of Palliative Nursing 2014, Vol 20, No 6
Discussion
© 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 reecting
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.
Discussion
According to Timmermans (1994), when a
patient receives a diagnosis of a life-threatening
illness, denitions 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 conrmation 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 afrming
life and what was important to her. If this kind
❛If health
professionals
conduct
business as
usual, they try
to reduce the
patient’s
uncertainty ...
But if they
reduce or
suppress the
patient’s
feelings of
uncertainty,
they may
also risk
extinguishing
a icker of
hope ...❜
International Journal of Palliative Nursing 2014, Vol 20, No 6 275
Discussion
© 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 exemplies 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 Afrm values, do not deny hope
l Acknowledge hopes that have changed but also afrm 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
Discussion
© 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 afrmed. It is also important to
acknowledge patient hopes that may have
changed to better align with their current situa-
tion while also afrming 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 afrms 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 afrm
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.
Conclusion
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
prognosis
should match
the wishes of
the patient ...❜
International Journal of Palliative Nursing 2014, Vol 20, No 6 277
Discussion
© 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 conicts of interest to declare.
Benzein E, Norberg A, Saveman BI (2001) The meaning of
the lived experience of hope in patients with cancer in
palliative home care. Palliat Med 15(2): 117–26
Bern-Klug M (2004) The ambiguous dying syndrome.
Health Soc Work 29(1): 55–65
Borneman T, Brown-Saltzman K (2010) Meaning in illness.
In: Ferrell B, Coyle N, eds. Oxford Textbook of Palliative
Nursing. 3rd edn. Oxford University Press, New York
Cassell EJ (2013) The Nature of Healing: The Modern Prac-
tice of Medicine. New York, Oxford University Press
Chochinov HM, Hassard T, McClement S et al (2009) The
landscape of distress in the terminally ill. J Pain Symptom
Manage 38(5): 641–9. doi: 10.1016/j.jpainsym-
man.2009.04.021
Copp G (1997) Patients’ and nurses’ constructions of death
and dying in a hospice setting. J Cancer Nurs 1(1): 2–13
Creen T (2002) Enabling hope in the terminally ill. In:
Anderson R, ed. Palliative Care Patient and Family
Counseling Manual. 2nd edn. Aspen Publishers,
New York
Curtis JR, Engelberg R, Young JP et al (2008) An approach
to understanding the interaction of hope and desire for
explicit prognostic information among individuals with
severe chronic obstructive pulmonary disease or
advanced cancer. J Palliat Med 11(4): 610–20. doi:
10.1089/jpm.2007.0209
Devik SA, Enmarker I, Wiik GB, Hellzèn O (2013) Mean-
ings of being old, living on one’s own and suffering from
incurable cancer in rural Norway. Eur J Oncol Nurs
17(6): 781–7. doi: 10.1016/j.ejon.2013.03.009
Eliott JA, Olver IN (2009) Hope, life, and death: a qualita-
tive analysis of dying cancer patients’ talk about hope.
Death Stud 33(7): 609–38. doi:
10.1080/07481180903011982
Ersek M, Cotter V (2010) The meaning of hope in the dying.
In: Ferrell B, Coyle N, eds. Oxford Textbook of Palliative
Nursing. 3rd edn. Oxford University Press, New York
Glaser B, Strauss A (1965) Awareness of Dying. Aldine,
Chicago, IL
Hansen BS, Rørtveit K, Leiknes I et al (2012) Patient experi-
ences of uncertainty - a synthesis to guide nursing practice
and research. J Nurs Manag 20(2): 266–77. doi:
10.1111/j.1365-2834.2011.01369.x
Hutchings D (2012) Living with the twin mysteries of prog-
nostication and death awareness. J Palliat Care 28(1):
50–1
Lobb EA, Lacey J, Kearsley J, Liauw W, White L, Hosie A
(2013) Living with advanced cancer and an uncertain
disease trajectory: an emerging patient population in pal-
liative care? BMJ Support Palliat Care doi: 10.1136/
bmjspcare-2012-000381
Maguire P, Weiner J (2009) Communication with terminally
ill patients and their families. In: Chochinov HM, Breit-
bart W, eds. Oxford Handbook of Psychiatry in Palliative
Medicine. 2nd edn. Oxford University Press, New York
McIntosh J (1977) Communications and Awareness in a
Cancer Ward. Prodist, New York
Mishel MH (1984) Perceived uncertainty and stress in
illness. Res Nurs Health 7(3): 163–71
Mishel M (1999) Uncertainty in chronic illness. Annu Rev
Nurs Res 17: 269–94
Nekolaichuk CL, Bruera E (1998) On the nature of hope in
palliative care. J Palliat Care 14(1): 36–42
Reinke LF, Shannon SE, Engelberg RA, Young JP, Curtis JR
(2010) Supporting hope and prognostic information:
nurses’ perspectives on their role when patients have
life-limiting prognoses. J Pain Symptom Manage 39(6):
982–92. doi: 10.1016/j.jpainsymman.2009.11.315
Stephenson PS, Berry DM (2014) Spirituality and uncertain-
ty at the end of life. Oncol Nurs Forum 41(1): 33–9. doi:
10.1188/14.ONF.33-39
Timmermans S (1994) Dying of awareness: the theory of
awareness contexts revisited. Sociol Health Illness 16(3):
322–39
Williams A, Duggleby W, Eby J (2013) Hope against hope:
exploring the hopes and challenges of rural female car-
egivers of persons with advanced cancer. BMC Palliat
Care 12(1): 44. doi: 10.1186/1472-684X-12-44
●
IJPN
