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Discussing life expectancy with terminally ill cancer patients and their carers: a qualitative study

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Abstract

Goals of work

There is uncertainty regarding the preferred content and phrasing of information when discussing life expectancy with terminally ill cancer patients and their carers. The objective of this study was to explore the various stakeholders’ perceptions about these issues.

Subjects and methods

We conducted focus groups and individual interviews with 19 patients with advanced cancer and 24 carers from three different palliative care (PC) services in Sydney and 22 PC health professionals (HPs) from ten different sites in Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants’ narratives were analysed using qualitative methodology.

Main results

Participants’ suggestions regarding the content of prognostic discussions included: explaining uncertainty and limitations, explaining the process involved with making survival predictions, and avoiding being too exact. Those patients and carers who wanted to be given a time frame mostly wanted to know how long the average person with their condition would live and/or be given a rough range. HPs had various views regarding ways to phrase life expectancy: days versus weeks versus months, likelihood of the patients being alive for certain events, a rough quantitative range and probabilities (e.g. 10% and 50% survival). However, most HPs said they would rarely if ever give statistical information to patients.

Conclusions

This paper provides some potential strategies, words and phrases which may inform discussions about life expectancy. Further research is needed to determine the generalizability of these findings.

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Acknowledgements

We are grateful to all the patient, carer and HP participants for giving their time and energy to this study, and to the staff of the involved PC services who assisted with patient identification. Dr Clayton is supported by the National Health and Medical Research Council on a Medical Postgraduate Research Scholarship.

Author information

Authors and Affiliations

  1. Medical Psychology Research Unit, University of Sydney, Blackburn Building D06, Sydney, NSW, 2006, Australia

    Josephine M. Clayton, Phyllis N. Butow & Martin H. N. Tattersall

  2. Sacred Heart Palliative Care Service, St Vincent’s Hospital, Darlinghurst, Sydney, NSW, 2010, Australia

    Josephine M. Clayton

  3. School of Psychology, University of Sydney, Griffith Taylor Building A19, Sydney, NSW, 2006, Australia

    Phyllis N. Butow

  4. Institute for Doctor-Patient Communication and Section of Palliative Care and Medical Ethics, Department of Medicine, University of Pittsburgh, Pittsburgh, PA, USA

    Robert M. Arnold

  5. Department of Cancer Medicine, University of Sydney, Blackburn Building D06, Sydney, NSW, 2006, Australia

    Martin H. N. Tattersall

Authors
  1. Josephine M. Clayton
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  2. Phyllis N. Butow
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  3. Robert M. Arnold
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  4. Martin H. N. Tattersall
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Corresponding author

Correspondence to Josephine M. Clayton.

Focus group and individual interview discussion format

Focus group and individual interview discussion format

Discussion format for health professionals

Discussions about the future in a palliative care setting are often difficult. I am referring not only to discussions about life expectancy but also the likely symptoms that a patient may face in the future and the likely mode of death. How do you tend to approach questions about the future from palliative care patients? How do you tend to approach questions about the future from carers of palliative care patients?

How do you think information about the future should be portrayed during a palliative care consultation?

Do you ever initiate discussion about the future during a palliative care consultation? In what circumstances do you think this is appropriate?

When discussing the future with a palliative care patient or with his or her carer, is there any way of communicating hope?

If a palliative care patient (or his or her carer) asked about their life expectancy:

  • What words would you use?

  • What sort of time frames would you give (if any)?

  • Would you give any statistics?

  • Would you draw survival graphs or use any other aids?

What advice would you give to palliative care trainees regarding discussion of the future?

Discussion format for patients and carers

Prognosis refers to likely future developments and life expectancy. What information do you think is important for your palliative care doctor to tell you (or the person you care for) about your (their) prognosis? (not necessarily during the first consultation) What information do you think is important for a palliative care doctor to tell carers about the prognosis of the person they care for?

How do you think information about prognosis should be portrayed during a palliative care consultation?

Who should initiate discussion about prognosis during a palliative care consultation?

Should palliative care doctors offer to discuss prognosis with you (for carers: or the person you care for or with you the carer) at certain times?

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Clayton, J.M., Butow, P.N., Arnold, R.M. et al. Discussing life expectancy with terminally ill cancer patients and their carers: a qualitative study. Support Care Cancer 13, 733–742 (2005). https://doi.org/10.1007/s00520-005-0789-4

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  • DOI: https://doi.org/10.1007/s00520-005-0789-4

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