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PAPERS: Peter Kirk, Ingrid Kirk, and Linda J Kristjanson 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 [Abstract] [Full text]

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What do patients receiving palliative care for cancer and their families want to be told?

julian abel   (11 June 2004)

What do patients receiving palliative care for cancer and their families want to be told?

julian abel   (11 June 2004)

Re: What do patients receiving palliative care for cancer and their families want to be told?

Peter J Kirk, Ingrid Kirk   (21 June 2004)

We had some similar but other contrasting findings

Josephine M Clayton, Phyllis N. Butow, Martin H.N. Tattersall.   (21 June 2004)

Generalisability of qualitative research: we need more background information

Gunn E Grande, Chris J Todd   (21 June 2004)

Re: Generalisability of qualitative research: we need more background information

Peter J Kirk, Ingrid Kirk, Linda Kristjanson   (23 June 2004)

Discussing Coroner's referral with families of palliative care patients with mesothelioma

Sarah J Human   (19 August 2004)

What do patients receiving palliative care for cancer and their families want to be told? 11 June 2004
julian abel, consultant in palliative care Weston super mare Send response to journal: Re: What do patients receiving palliative care for cancer and their families want to be told?	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
What do patients receiving palliative care for cancer and their families want to be told? 11 June 2004
julian abel, consultant in palliative care Weston super mare Send response to journal: Re: What do patients receiving palliative care for cancer and their families want to be told?	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
Re: What do patients receiving palliative care for cancer and their families want to be told? 21 June 2004
Peter J Kirk, clinical professor in Family Medicine and Palliative Care Universities of British Columbia and Victo Island Medical Program,Queen Alexandra Centre for Childrens Health,Victoria,B.C. Canada V8N 1V7, Ingrid Kirk Send response to journal: Re: Re: What do patients receiving palliative care for cancer and their families want to be told?	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
We had some similar but other contrasting findings 21 June 2004
Josephine M Clayton, Consultant Physician in Palliative Medicine and PhD student Medical Psychology Research Unit, Blackburn Building D06, University of Sydney, NSW 2006, Australia, Phyllis N. Butow, Martin H.N. Tattersall. Send response to journal: Re: We had some similar but other contrasting findings	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
Generalisability of qualitative research: we need more background information 21 June 2004
Gunn E Grande, Post Doctoral Research Fellow School of Nursing, Midwifery & Health Visiting, University of Manchester, Manchester M13 9PL, Chris J Todd Send response to journal: Re: Generalisability of qualitative research: we need more background information	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
Re: Generalisability of qualitative research: we need more background information 23 June 2004
Peter J Kirk, Clinical professor universities of B.C and Victoria Island Medical Program, Queen Alexandra's Centre for Childrens Health,Victoria V8N1V7, Ingrid Kirk, Linda Kristjanson Send response to journal: Re: Re: Generalisability of qualitative research: we need more background information	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
Discussing Coroner's referral with families of palliative care patients with mesothelioma 19 August 2004
Sarah J Human, Specialist Registrar in Palliative Medicine Department of Palliative Medicine, Torbay District General Hospital, Torquay, Devon TQ2 7AA Send response to journal: Re: 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