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Anne-Mei The a Institute for Research in Extramural Medicine/Department of
Social Medicine, Vrije Universiteit, Van der Boechorststraat 7, 1081 BT
Amsterdam, Netherlands, b Department of Lung
Diseases, University Hospital Groningen, PO Box 30001, 9700 RB
Groningen, Netherlands
Correspondence to: A-M The am.the.emgo{at}med.vu.nl
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Abstract |
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Objective:
To discover and explore the factors that
result in "false optimism about recovery" observed in patients with
small cell lung cancer.
Almost all patients with cancer want to know their diagnosis and
most patients also want to be informed about the chance that they will
be cured.1 This does not imply that these patients want to
hear the really bad news about their condition. Many patients, when
they fear that their prognosis is rather poor, do not ask for precise
information and do not hear it if it is provided by the
doctor.
2 3
Our study started from the observation that, after their first course of chemotherapy virtually all patients with
small cell lung cancer in a university hospital programme showed a
"false optimism" about their recovery, in the sense that the
patients' interpretations of their prognosis were considerably more
optimistic than those of their doctors. It was not unusual for a
patient to tell relatives and friends that the doctor had informed them
that they were cured, when actually the cancer was not cured and the
life expectancy of these patients was a maximum of two years.
We explored the reasons why virtually all these patients showed this
false optimism. This topic is important because patients' ideas about
their prognosis affect the choices they make regarding their treatment
and end of life care.
4 5
Initially we assumed that
features of the communication between doctors (and nurses) and patients
had caused this conflict between actual prognosis and what these
patients seemed to believe. We examined which aspects of communication
between doctors (and nurses) and patients contribute to the fact that
patients do not know their poor prognosis. We studied in actual
practice what information was given and what information was received
and the effects on decision making about treatment and end of life
care.6
The researcher (AT) initially carried out a study on the
role of nurses in decisions concerning euthanasia on a ward for lung disease.7 Only the final phase of euthanasia could be
observed, however, because the preparatory process had usually taken
place in the outpatient clinic. To determine the moment when patients begin to talk about euthanasia and to investigate comprehensively the
subsequent process we also had to make observations in the outpatient
clinic. During observations in the clinic it became apparent that
patients there rarely dealt with their approaching death. In the
waiting room, terminal patients with a maximum life expectancy of a few
months said that the doctor had told them that they were cured. They
were making plans for the future. In this way, by spending much time
observing at the clinic and by focusing on the context of euthanasia,
AT discovered the widespread occurrence, familiar to doctors and
nurses, of false optimism about recovery. She also discovered that
those concerned in the treatment of these patients in daily medical
practice considered this false optimism to be a more important problem
than euthanasia.
We designed a qualitative observational (ethnographic) study to
discover and explore factors in the communication between patients and
staff (doctors and nurses) that contribute to false optimism.
8 9
Data were collected through (full time)
observation of patients in the lung diseases ward and clinic of a
university hospital. After obtaining consent from patients, AT attended
their outpatient clinic consultations, had informal conversations with patients and relatives in the clinic waiting room, accompanied them to
x ray and other hospital services, and also conducted more
formal interviews with patients and staff. On many occasions patients
were visited at home, particularly in the terminal phase of their
illness when they had stopped attending the outpatient clinic. Funerals
were attended and a small number of bereaved spouses interviewed.
In a first stage (1992-4) the researcher (AT) observed a group of 17 patients from initial diagnosis to their death. The size of the sample
was based on AT's experience that it was not possible to keep
intensive contact with more than about 15 patients and their families.
After an initial analysis of the data collected in this first stage, in
a second stage (1995-7) a group of 18 patients was observed from
initial diagnosis to their death. Data from this second group of
patients confirmed and specified findings from the first group.
From the start of both stages of data collection all new patients with
a diagnosis of small cell lung cancer were asked to participate and to
give their informed consent. The procedure was approved by the ethics
committee. Only two eligible patients were not approached because they
avoided any contact with the researcher (AT) from the outset. All
approached patients gave their consent to be observed and interviewed
and agreed to publication of anonymised extracts of observations and
conversations in which they participated. Selection bias cannot be
excluded but is unlikely. Participants' ages ranged from 45 to 70 years, and most (28) were men. Most of them were or had been heavy
smokers, had attained a relatively low level of education, and had been
employed in heavy physical work. All patients had received a first
course of chemotherapy. Most of them received further courses after
recurrence of the tumour. Radiotherapy was given only as a second or
third line treatment in 13 cases, sometimes in combination with
chemotherapy.
Box 1
: Bad news consultation
Design:
A qualitative observational (ethnographic) study in two stages over four years.
Setting:
Lung diseases ward and outpatient clinic in university hospital in the Netherlands.
Participants:
35 patients with small cell lung cancer.
Results:
"False optimism about recovery" usually
developed during the (first) course of chemotherapy and was most
prevalent when the cancer could no longer be seen in the x
ray pictures. This optimism tended to vanish when the tumour recurred,
but it could develop again, though to a lesser extent, during further courses of chemotherapy. Patients gradually found out the facts about
their poor prognosis, partly because of physical deterioration and
partly through contact with fellow patients who were in a more advanced
stage of the illness and were dying. "False optimism about
recovery" was the result an association between doctors' activism
and patients' adherence to the treatment calendar and to the
"recovery plot," which allowed them not to acknowledge explicitly
what they should and could know. The doctor did and did not want to
pronounce a "death sentence" and the patient did and did not want
to hear it.
Conclusion:
Solutions to the problem of collusion
between doctor and patient require an active, patient oriented approach from the doctor. Perhaps solutions have to be found outside the doctor-patient relationship itself
for example, by
involving "treatment brokers."
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Introduction
Top
Abstract
Introduction
Methods
Results
Discussion
References
![]()
Methods
Top
Abstract
Introduction
Methods
Results
Discussion
References
and that's an advantage if I may say so
this
type of cancer is very sensitive to chemotherapy. It can certainly be
treated. We can offer you treatment with chemotherapy, and I would
definitely advise you to accept it. If we don't do anything, without
treatment it could soon be over. In two or three months it could be the
end. With therapy you must think in terms of years. It's difficult to
say at this moment how long. It depends on so many things, for
instance, how you respond to the therapy. We must wait and see how it
develops before I can say anything definite."
The analysis and results reported are based on four types of data. Firstly, the researcher (AT) made comprehensive detailed field notes of her observations of the behaviour of patients and staff, within and outside consultations, and of her informal conversations with them. Secondly, formal interviews with patients and staff were tape recorded and transcribed. Thirdly, the researcher had access to the medical and nursing records of the patients who had given consent. Fourthly, the researcher also kept an ongoing diary in which she reported her own behaviour and feelings. These data were analysed per patient, resulting in 35 case studies. Each case analysis was aimed at a "thick description"10 and explanation of the information seeking and information avoiding strategies of that particular patient and of the changes in these strategies over time from diagnosis to the terminal phase of the illness. After the individual case studies were completed, similarities and differences between cases were analysed.
Analysis of six "atypical" cases was important to achieve a more
comprehensive understanding of the information seeking and information
avoiding strategies of most patients. Of these six, three refused
treatment and three who received treatment did not show "false
optimism" (details of these patients can be found on the
BMJ 's website). Two of the three patients who
refused treatment were familiar with the plight of patients with
incurable cancer, and the third had experienced so many other diseases
and treatments that she did not want to participate in any again. The
absence of "false optimism" in three patients who did receive treatment was related to their own or their children's relatively high
educational level.
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Results |
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A common trajectory
A common illness trajectory was found in 29 (out of 35) patients.
This consisted of five stages: an "existential crisis" at
diagnosis; a "focus on therapy" during the first treatment period;
"relative peace of mind" during the period when the cancer was not
visible in x ray pictures; another "existential crisis" at the diagnosis of recurrence of the cancer; and the final crisis on
receiving the news that no further treatment was available or feasible.
Concealment of prognosis
In the consultation in which doctors informed patients that they
had cancer, it was usually also mentioned that there was no cure.
Details of the likely progress of the disease and about prognosis were
rarely given. Patients were told that "it is extremely difficult to
give any indication of the general prognosis because each patient is
unique." In most cases this statement was followed immediately with
an offer of chemotherapy. Uniqueness of individual patients was
emphasised again with statements such as "We never know how an
individual patient will respond to this therapy." Doctors said that
they could provide more information (about prognosis) after the results
of chemotherapy were available.
Emphasis on treatment
As indicated above, a characteristic feature of the consultation
in which patients were told that they had cancer was a rapid
transition from the provision of bad news to a discussion about what
can be done about it (see box 2). By far the most time and energy was
spent on "treatment" options. It is, however, important to note not
only that the doctor instigated this but also that the patient eagerly
complied and was keen to discuss the treatment options. When the
patient was told that the cancer had returned, he immediately
interrupted: "What can you do about it, doctor?" Throughout the
treatment and remission period (second and third stages) discussions
during consultations were almost entirely restricted to issues such as
the planning of chemotherapy sessions, side effects, and test results.
Both parties colluded in focusing on the "treatment
calendar"2 and, at the same time, in ignoring the long
term (prognosis and the likely shape of the illness trajectory).
Although doctors and nurses openly discussed patients' (invariably
poor) prognosis with each other
for example, at staff
meetings
it was generally understood that this knowledge
was not public and must not be conveyed to patients by nurses. In
contrast, nurses could discuss arrangements for treatment and test
results with patients at all times.
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Ambiguities
Words used by the doctors were often ambiguous. For example, the
word "treatment" had a much more positive meaning for the patient
than it had for the doctor. If the doctor stated that "this tumour
can be treated" (meaning that there are treatments that prolong
life), the patient heard that "something can be done about
it"
in other words that he or she "can be cured."
Apart from such unintentional ambiguity there was also intended
ambiguity aimed at an incorrect overoptimistic interpretation by the
patient of the results of chemotherapy. Examples are "the therapy has had the optimal effect," "the x ray pictures show no
abnormalities any more," and "your lungs are clear" (see box 4).
Knowing and not knowing
Initially patients and relatives colluded with doctors in
maintaining a "recovery plot": yesterday the patient was healthy,
today he is ill, but tomorrow he will be better again, thanks to the
efforts of the doctor and the patient, with support of carers.
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Regret
Recovery stories and the optimism sustained by them helped
patients and relatives to endure the treatment phase, but, on the other
hand, it was extremely painful when later it became clear that this
optimism was based on illusions. Moreover, it made it more difficult to
accept imminent death and it obstructed "saying farewell" in time
and making necessary arrangements. Obviously, this false optimism also
hindered patients in making sensible and well considered treatment
decisions that are not based on fear. Retrospectively this was a reason
for regret both for patients and relatives (see box
6).
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What is already known on this topic
Many cancer patients, when they fear that their prognosis is poor, do not ask for precise information and do not hear it if it is provided by the doctor In a cultural climate of openness and full disclosure it is not known how doctors and patients maintain a mutual pretence of "not knowing" a poor prognosis What this study addsThis observational (ethnographic) study of patients with untreatable small cell lung cancer shows that doctors and patients collude in behaviour that fosters a false optimism about recovery By focusing on the "treatment calendar" patients ignore the issue of prognosis Patients' false optimism cannot be explained by doctors withholding information or a lack of communication skills, although both can play a part, because in such an explanation patients are one sidedly and erroneously portrayed as victims of doctors' behaviour |
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Discussion |
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Doctors seem to be actively involved in bringing stability to the
uncertain life of patients by occupying them with all kinds of
treatment activities (including chemotherapy) and planning (such as the
arrangement of tests and check ups). This "medical activism,"11 which might be related to a strong need for
control in the Western world, helps both doctors and patients to divide the illness trajectory, which inevitably leads to death (within a
maximum of two years), into much smaller, emotionally less charged, and
more optimistic end points. By always looking forward to a next
treatment session or appointment (short term) patients can avoid
thinking about the longer term. Patients' optimism is a direct effect
of this focus on the short term. The extreme form of this optimism in
the third stage of the illness trajectory can be explained by the fact
that the long term importance of the vanishing of the tumour from
x ray pictures
or rather the lack of
it
is not recognised.
An important finding of our study is that the patients' false optimism about recovery is not only the result of the withholding of information from patients who are eager to know. On the contrary, patients seem to accept gratefully every opportunity offered by doctors to "forget" the future and to focus on the present, which is full of action (treatments, tests, etc). This recovery story is the dominant social discourse, and, in general, it is difficult for patients to deviate from it.12 This is particularly difficult when the vanishing of the tumour from the x ray pictures unambiguously seems to confirm its validity.
Applicability to other settings
We consider our findings valid for the university clinic in which
we conducted this study. We assume they are applicable to other Dutch
clinics in which patients with small cell lung cancer are treated and,
within these, to most patients who have not refused chemotherapy from
the outset. With regard to the generalisability of our it must be
remembered that small cell lung cancer is characterised by its
extraordinary reactivity to first line chemotherapy. Although, generally, our findings agree with those of qualitative interview studies with cancer patients,
2 3
applicability of our
specific findings to other categories of patients and to other
countries can be confirmed only by further ethnographic
research.8 At present such research is regrettably scarce.
Conclusions
It seems that false optimism about recovery is the result of an
association between doctors' activism and patients' adherence to the
recovery plot, which allows them not to acknowledge explicitly what
they both should know and can know. The doctor does and does not want
to pronounce a "death sentence" and the patient does and does not
want to hear it. Although patients (and their relatives) collude with
their doctors in maintaining optimism, most of them regret this with
hindsight. We conclude that it is not in the patients' interest to
adhere to the "treatment calendar" in the early phases of the
illness trajectory. Evidence for this is also comes from the cases of
the three patients who did not have false optimism (see the extra box
on the BMJ 's website). These patients were able
to use the extra time provided by the effects of treatment in a
conscious way to achieve their personal goals.
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Acknowledgments |
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Contributors: A-MT was involved in the conception and the design of the study, collected all data, and contributed to the analysis and interpretation of the data. TH contributed to the analysis and interpretation of the data. GK was involved in the conception and the design of the study, supervised data collection, and contributed to the analysis of the data and the final version of the paper. GW contributed to the interpretation of the data and the drafting of the paper. A-MT and TH are guarantors.
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Footnotes |
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Funding: Dutch Cancer Research Fund (Koningin Wilhelmina Fonds).
Competing interests: None declared.
An additional box covering
atypical cases can be found on the BMJ's website
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References |
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| 1. |
Meredith C, Symonds P, Webster L, Lamont D, Pyper E, Gillis CR, et al.
Information needs of cancer patients in west Scotland: cross sectional survey of patients' views.
BMJ
1996;
313:
724-726 |
| 2. | Costain Schou K, Hewison J. Experiencing cancer. Buckingham: Open University Press, 1999. |
| 3. |
Leydon G, Boulton B, Moynihan C, Jones A, Mossman J, Boudioni M, et al.
Cancer patients' information needs and information seeking behaviour: in depth interview study.
BMJ
2000;
320:
909-913 |
| 4. | Weeks JC, Cook FE, O'Day SJ, Peterson LM, Wenger N, Reding D, et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA 1998; 21: 1709-1714. |
| 5. | Christakis NA. Death foretold; prophecy and prognosis in medical care. Chicago: University of Chicago Press, 2000. |
| 6. | Smith TJ, Swisher K. Telling the truth about terminal cancer (editorial). JAMA 1998; 21: 1746-1748. |
| 7. | The A-M. Nursing dilemmas in euthanasia and other end-of-life decisions. Houten: Bohn Stafleu Van Loghum, 1997 (in Dutch). |
| 8. |
Mays N, Pope C.
Qualitative research: observational methods in health care settings.
BMJ
1995;
311:
182-184 |
| 9. | The A-M. Palliative care and communication. Houten: Bohn Stafleu Van Loghum, 1999 (in Dutch). |
| 10. | Geertz C. The interpretation of cultures. New York: Basic Books, 1973. |
| 11. | Nuland SW. How we die: reflections on life's final chapter. London: Chatto and Windus, 1994. |
| 12. | Frank AW. The wounded storyteller: body, illness and ethics. Chicago: University of Chicago Press, 1995. |
(Accepted 18 September 2000)
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