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Exploring symptom meaning: perspectives of palliative care physicians

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Abstract

Context

Understanding patients’ symptom experiences is essential to providing effective clinical care. The discussion between patients and physicians of symptom meaning and its significance, however, is ill understood.

Objectives

To investigate palliative care physicians’ understanding of symptom meaning, and their experiences of and attitudes towards the discussion of symptom meaning with patients.

Methods

Semi-structured interviews were conducted (N = 17) across Sydney, Australia. Transcripts were analysed using framework analysis.

Results

Six key themes were identified: (1) definitions of symptom meaning (causal meanings, functional impact, existential impact, and cascade of meanings); (2) meanings are personal (demographic, culture, spiritual, and family differences); (3) eliciting meanings requires subtlety and trust (following the patient’s cues); discussing meaning can be (4) hard (for the patient and health professional); (5) therapeutic (assuaging fears, feeling listened to and valued, increased sense of control, and reduced symptom distress); and (6) enhances clinicians’ practice and work satisfaction (provision of more tailored care, reassurance through the provision of information, and strengthening of doctor-patient relationship).

Conclusions

Exploring symptom meaning can serve to provide information, alleviate anxiety, and facilitate individualised care, but only when patients present cues or are open to discuss symptom-related concerns. However, various barriers hinder such dialogue in consultations. Greater awareness of symptom meaning and its influence may facilitate physicians exploring symptom meaning more with patients in the future.

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Author information

Authors and Affiliations

  1. Centre for Medical Psychology and Evidence-based Decision-Making, and Kolling Institute, Northern Clinical School, The University of Sydney, Level 6 North, Chris O’Brien Lifehouse (C39Z), Sydney, NSW, 2006, Australia

    Celina F. Estacio, Phyllis N. Butow, Melanie R. Lovell, Skye T. Dong & Josephine M. Clayton

  2. HammondCare Palliative and Supportive Care Service, Greenwich Hospital, Greenwich, Australia

    Melanie R. Lovell & Josephine M. Clayton

Authors
  1. Celina F. Estacio
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  2. Phyllis N. Butow
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  3. Melanie R. Lovell
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  4. Skye T. Dong
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  5. Josephine M. Clayton
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Corresponding author

Correspondence to Phyllis N. Butow.

Ethics declarations

The University of Sydney Human Research Ethics Committee granted approval for this study.

Conflict of interest

The authors declare that they have no conflicts of interest.

Appendices

Appendix I Semi-structured Interview Guide

  1. 1.

    Symptom meanings in palliative care

    1. a.

      Could you tell me about some of the most distressing symptoms you see in your practice?

    2. b.

      It is thought that patients interpret their symptoms, and form their own ‘symptom meaning’ – how do you interpret that phrase “symptom meaning”?

Provide definition adapted from Armstrong (2003):

A patient’s symptom experience also depends on the meaning attributed to a symptom, not just frequency, distress and intensity. These meanings may be derived from the patient’s perception of the potential cause or severity of the symptom (e.g. the cancer is worsening, is this normal) or what the symptom could signify for the future (e.g. imminent death, can’t work/drive anymore). Meanings can be positive (spend more time with family) or negative according to the patient’s interpretation or can also be more existential especially when symptoms act as reminders of mortality, loss of purpose or the struggle of daily living.

  1. c.

    What kinds of symptom meanings do you hear from patients in your practice?

  2. d.

    How does the patient’s spiritual life impact on their symptom experience and the meaning they give to symptoms?

  1. 2.

    Communication of symptom meaning in palliative care consultations

  1. a.

    How important do you consider talking about the meanings patients give to their symptoms during consultations?

  • Why or why not?

  1. b.

    How do you find out what meaning a patient is giving to their symptom(s)?

  • What makes it difficult to talk about meaning?

  • What makes it difficult to work out the meaning a patient gives to their symptom?

  • What helps you to understand the meaning patients are giving to their symptom?

  1. 3.

    Significance and impact of discussing symptom meanings in clinical care and the patient themselves

  1. a.

    What impact do you think discussing a patient’s symptom meanings has, on clinical management?

  • Can you give any examples of when discussing a patient’s symptom meaning has influenced clinical management?

  1. b.

    What impact do you think discussing a patient’s symptom meanings has, on the patient themselves?

  • Can you give any examples of when discussing meaning has affected a patient’s perception of the course of their disease or quality of life?

  1. c.

    What do you think is the impact of discussing symptom meanings on your relationship with the patient?

  1. 4.

    Close

Is there anything else that you think might be important to add?

Thank you very much for taking part in this interview.

Appendix II Additional quotations

Table 4 Examples of symptom meanings recalled by interviewed physicians
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Table 5 Meanings are personal
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Table 6 Eliciting meanings requires subtlety and trust
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Table 7 Discussing meaning can be hard
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Table 8 Discussing meaning can be therapeutic
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Table 9 Discussing meaning enhances clinicians’ practice and work satisfaction
Full size table

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Estacio, C.F., Butow, P.N., Lovell, M.R. et al. Exploring symptom meaning: perspectives of palliative care physicians. Support Care Cancer 26, 2769–2784 (2018). https://doi.org/10.1007/s00520-018-4126-0

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  • DOI: https://doi.org/10.1007/s00520-018-4126-0

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