What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study
BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.38103.423576.55 (Published 03 June 2004) Cite this as: BMJ 2004;328:1343
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The point raised is well taken. Our study, in common with most
qualitative research, generated very rich and dense data. Publication
guidelines specify length and it is always a difficult decision as to
which information to sacrifice.Although demographic information covering
age, education,ethnicity, religion, diagnosis, time since diagnosis,
interval between interview and death, etc. was gathered, and a table
covering a portion of it is available in the e-version, we agree that
fuller descriptions of participants in qualitative research would be
helpful to other researchers.
Competing interests:
None declared
Competing interests: No competing interests
Kirk et al (1) report a well conducted qualitative study of what
palliative care patients and their families want to be told about the
patients' illness. They report: "Almost all patients requested prognostic
information ...."
This contrasts with the findings of The et al, also published in the
BMJ (2), that the vast majority of patients colluded with health
professionals in maintaining "false optimism about recovery" and
preventing clear communication about prognosis.
These apparently conflicting findings may be due to method and focus
of investigation. Kirk et al (1) used interviews, The et al (2)
observation over time. Interviews may yield a more post hoc, sanitised and
rationalised account of respondents' views, whilst observation may better
reflect the complexity of the information exchange process. Furthermore,
the overall message was qualified in both studies: despite desire for
prognostic information, Kirk et al report that patients also needed to
maintain a glimmer of hope and showed temporal fluctuation in their desire
for information; The et al report that patients' tendency towards "false
optimism" varied with stage of illness.
Nevertheless, interview excerpts from the two papers suggest that the
results represent very different patient samples with different outlooks,
and that this could account for differences in findings. However, the
authors do not consider how patients' characteristics may affect their
results. The et al's sample consisted of patients with small cell lung
cancer, recruited from a university hospital outpatient clinic, who
predominantly had low levels of education and manual occupations. Only
three patients in the study failed to display "false optimism", all of
whom were well educated or had well educated children. Kirk et al do not
give information on patients' diagnosis or educational level. However,
their participants were already enrolled in a palliative care programme,
which may yield a higher proportion of well educated, relatively young
patients (3). Furthermore, agreement to participate in interviews about
information giving would indicate a willingness to talk openly about
information in the first place.
This illustrates the need for qualitative researchers to provide rich
descriptions of the characteristics of their patient samples and study
context, so that readers can assess how this may influence the data that
emerge. Clearly, this is a concern for quantitative research as well, but
as samples here are usually larger, probability sampling normally
employed, and confidence intervals calculated, we may feel better able to
assess (more or less justly) the generalisability of results. For
qualitative studies the process of generalisation is different, but
equally relevant. It is important that "thick" description (4) of patients
and context is provided, so that readers are able to assess how well
results may fit other contexts of relevance to them. This will furthermore
aid us in unpicking how apparently disparate qualitative findings may
actually fit together into a larger mosaic. Probably both studies reflect
a continuum of information preferences described some 20 years ago (5),
rather than a single dichotomy.
(1) Kirk P, Kirk I, Kristjanson LJ. What do patients receiving
palliative care for cancer and their families want to be told? A Canadian
and Australian qualitative study. BMJ 2004; 328: 1343-1349 (BMJ, doi:
10.1136/bmj.38103.423576.55).
(2) The A-M, Hak T, Koeter G, van der Vaal, G. Collusion in doctor-
patient communication about imminent death: an ethnographic study. BMJ
2000; 321: 1376-1381.
(3)Grande GE, Addington-Hall JM and Todd CJ. Place of death and
access to home care services: are certain patient groups at a
disadvantage? Soc Sci Med 1998; 47: 565-579.
(4) Seale C. The Quality of Qualitative Research. London: Sage, 1999.
(5) Todd C, Still A. Communication between general practitioners and
patients dying at home. Soc Sci Med 1984; 18: 667-672.
Competing interests:
None declared
Competing interests: No competing interests
We read this paper with great interest. We have also recently
conducted focus groups and individual interviews with 19 palliative care
(PC) patients, and 24 carers from 3 PC services in Sydney and 22 PC health
professionals (HPs) from around Australia. We explored participants’ views
regarding optimal ways of discussing the future with PC patients and their
families. Some of our findings concurred and others contrasted with this
paper. Whilst most patient and carer participants stressed the importance
of consistency and openness, the specific information needs of carers were
highlighted. In general the carers wanted more detailed information about
the dying process and what would be required to look after the dying
person at home, than the patient. The value of having separate as well as
joint discussions with the patient and carer about end-of-life issues was
highlighted by all participants groups. This allows the HP to explore the
individual concerns and information needs without the barrier of
patient/carer protectiveness. The issue of confidentiality and sensitively
obtaining the patients’ permission prior to talking with the carer was,
however also emphasised.
We also explored participants’ views on how to communicate hope in
the context of discussions about prognosis and end-of-life issues.
Participants articulated the fine balance between truth telling and
nurturing hope. While all patients, carers and HPs stressed the importance
of honesty, they also stated that it is important not to be too blunt or
to give a lot of detailed information that the patient does not want to
hear. A spectrum of hope was identified, including several different types
of hope (ranging from the hope of a miracle cure to the hope of a peaceful
death). Over time a change in the focus of hope was noted as the person’s
illness progresses and the patient and their family come to terms with
this. However, the types of hope were not seen as mutually exclusive or
necessarily progressing in a step wise direction.
1. Kirk K, Kirk I, Kristjanson LJ. What do patients receiving
palliative care for cancer and their families want to be told? A Canadian
and Australian qualitative study. BMJ 2004; 328:1343-1347.
Competing interests:
None declared
Competing interests: No competing interests
Dear Dr Abel,
Thank you for your kind words about our article. Also
for pointing out the paper by Benzein et al, which we had not previously
read, and which presented an interesting alternative perspective, given
that the four themes that they identified also emerged very clearly in our
analysis, but we did not define confirmative relationships and
reconciliation with life and death as hope. (Our initial draft was much
longer and did go into more detail about the analysis). As they suggest
it would be interesting to do a longitudinal study and see whether the
lived experience of hope changed.
Peter and Ingrid Kirk
Competing interests:
None declared
Competing interests: No competing interests
The authors of this paper are to be congratulated for their work(1).
While a lot has been written about communication, there are very few
studies examining it fromt the patient's perspective. In particular,
breaking bad news is taught as a one off event. It is more useful to
think of it as a continual process that is part of a wider perspective of
helping patients and their families to come to terms with a terminal
illnes. This point is emphasised by the category described as staying the
course. Communication continues for the length of the patient's illness.
Deficiencies of communication can be remedied at later points and new
pieces of information can be given and assimilated according to individual
patients needs. This gets away from the concept that there is a package
of information that the clinician must give in order to have completed
giving bad news. This is a problem we commonly encounter on our breaking
bad news training courses within our district general hospital.
The paper also spoke about the role of hope. They did not reference
a paper by Benzwin, Norberg and Saveman (2). This qualitative study of
palliative home care patients identified four areas of hope. Two of these
were apparent in the current article. These were described as the hope of
cure, which was present even close to death, and the hope of
reconciliation with life and death. These hopes, in part, describe
something of the emotional journey of a terminal illness. Our
communication as health care professionals should be directed at assisting
ourpatients to cope with the processes of the immense changes that they
undergo, and communication skills training needs to emphasise this point,
particularly with reference to breaking bad news.
1/What do patients receiving palliative care for cancer and their
families want to be told? A Canadian and Australian qualitative study.
Peter Kirk, Ingrid Kirk, , Linda J Kristjanson.
2/ The meaning of the lived experience of hope in patients with
cancer in palliative home care. Benzein E, Norberg A,Saveman B.
Palliative Medicine 200: 15; 117-126
Competing interests:
None declared
Competing interests: No competing interests
The authors of this paper are to be congratulated for their work.
While a lot has been written about communication, there are very few
studies examining it fromt the patient's perspective. In particular,
breaking bad news is taught as a one off event. It is more useful to
think of it as a continual process that is part of a wider perspective of
helping patients and their families to come to terms with a terminal
illnes. This point is emphasised by the category described as staying the
course. Communication continues for the length of the patient's illness.
Deficiencies of communication can be remedied at later points and new
pieces of information can be given and assimilated according to individual
patients needs. This gets away from the concept that there is a package
of information that the clinician must give in order to have completed
giving bad news. This is a problem we commonly encounter on our breaking
bad news training courses within our district general hospital.
The paper also spoke about the role of hope. They did not reference
a paper by Benzwin, Norberg and Saveman (1). This qualitative study of
palliative home care patients identified four areas of hope. Two of these
were apparent in the current article. These were described as the hope of
cure, which was present even close to death, and the hope of
reconciliation with life and death. These hopes, in part, describe
something of the emotional journey of a terminal illness. Our
communication as health care professionals should be directed at assisting
ourpatients to cope with the immense changes that they undergo, and
communication skills training needs to emphasise this point, particularly
with reference to breaking bad news.
1/What do patients receiving palliative care for cancer and their
families want to be told? A Canadian and Australian qualitative study.
Peter Kirk, Ingrid Kirk, , Linda J Kristjanson.
2/ The meaning of the lived experience of hope in patients with
cancer in palliative home care. Benzein E, Norberg A,Saveman B.
Palliative Medicine 200: 15; 117-126
Competing interests:
None declared
Competing interests: No competing interests
Discussing Coroner's referral with families of palliative care patients with mesothelioma
EDITOR – The paper by Kirk et al provides useful insight into how
palliative care patients and their families wish to receive information
about their illness.1 Of related interest to us locally has been how to
inform families of patients with mesothelioma of the current legal
requirement that deaths from mesothelioma be reported to the Coroner
(Procurator Fiscal in Scotland). A postmortem and inquest usually follow.
Recent guidelines from the British Thoracic Society suggest that relatives
are warned, at an appropriate stage, of the duty to refer to the Coroner.2
In palliative care we aim to balance the timing and type of
information given against what patients and families wish to hear. The
requirement to discuss Coroner’s referral dictates the consultation
content so how it is delivered becomes all the more pertinent. Knowing
when to hold this discussion and indeed if patients should be involved is
also difficult. Talking to families without patients’ consent feels
unethical and yet discussing postmortems with patients sits uncomfortably.
Maintaining hope, an issue highlighted in Kirk’s paper, would seem
impossible.
We asked UK Palliative Care Consultants, by way of a postal
questionnaire (n=203, response rate 66%), how they usually manage this
situation. Most (84%) aim to talk to relatives prior to the death of the
patient. A few (9%) will broach discussion with the patient, only
divulging further information if prompted. Other issues noted were
availability of complementary information such as telephone help lines and
booklets3, the necessity of good communication skills and the potential
distress caused when things are managed badly. Whether the patient should
be informed proved controversial.
Qualitative research in the form of a semi-structured interview with
relatives may provide further insight. It is clear, however, that the
obligation to deliver this information should be tempered with respect for
individual need.
1 Kirk P, Kirk I, Kristjanson LJ. What do patients receiving
palliative care for cancer and their families want to be told? A Canadian
and Australian qualitative study. BMJ 2004;328:1343-1347 (5 June)
2 British Thoracic Society. BTS statement on malignant mesothelioma
in the United Kingdom, 2001. Thorax 2001;56:250-65
3 Robinson M, Macmillan nurse. “Information for people with
Mesothelioma and their carers” 2001 edition
Competing interests:
None declared
Competing interests: No competing interests