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Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice

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Abstract

Purpose

Although advance care planning (ACP) is recognised as integral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients’ unpredictable disease trajectories and equivocal treatment options, a disease-specific ACP model may be necessary. This study examines how Australian cancer patients consider ACP. Responses will inform the development of an Australian Cancer Centre’s ACP programme.

Methods

A constructivist research approach with grounded theory design was applied. Eighteen adults from lung and gastro-intestinal tumour streams participated. Participants first described their initial understanding of ACP, received ACP information, and finally completed a semi-structured interview assisted by the vignette technique. Qualitative inter-rater reliability was integrated.

Results

Participants initially had scant knowledge of ACP. On obtaining further information, their responses indicated that: For cancer patients, ACP is an individualised, dynamic, and shared process characterised by myriad variations in choices to actualise, relinquish, and/or reject its individual components (medical enduring power of attorney, statement of choices, refusal of treatment certificate, and advanced directive). Actualisation of each component involves considering, possibly conversing about, planning, and communicating a decision, usually iteratively. Reactions can change over time and are informed by values, memories, personalities, health perceptions, appreciation of prognoses, and trust or doubts in their substitute decision makers.

Conclusion

Findings endorse the value of routinely, though sensitively, discussing ACP with cancer patients at various time points across their disease trajectory. Nonetheless, ACP may also be relinquished or rejected and ongoing offers for ACP in some patients may be offensive to their value system.

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Notes

  1. A MEPOA is a legal document where an individual (the ‘donor’) appoints another person (the ‘agent’) to make decisions about medical treatment on their behalf in circumstances when the donor becomes incompetent and is unable to make decisions for themselves due to accident or illness resulting in incapacity [2].

  2. A statement of choices provides specific information related to a person’s wishes and values [3].

  3. A refusal of treatment certificate applies to the refusal of a medical treatment for a current condition and not to an illness/condition that may occur in the future. It does not allow for the refusal of palliative care [2].

  4. An advance directive (AD) is typically defined as a document which is created by a person while they are competent, that defines the medical treatment that the person wishes to refuse should they become incompetent in the defined circumstances [2].

  5. Ages and genders are stated to indicate the different participants (there were no patients with same age and gender).

  6. To refuse to engage in all or some of ACP components and decisions.

  7. To consciously hand over ACP decisions and/or have an expectation that others will assume ACP decisions on their behalf.

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Acknowledgments

The authors thank A/ Prof Mei Krishnasamy for her comments on the manuscript, staff from the lung and gastrointestinal tumour streams and research staff for their support in this project. We are grateful to patients who generously participated. NM was responsible for study concept and secured funding. NM, AP, OS, JC, and NS were responsible for study design. NM and COC liaised with the consultant oncologists, recruited, and gained written informed consent from the patients, collected the data, and managed the trial on a daily basis. BD and MM facilitated recruitment of patients. NM, COC, AP, and NS performed analysis and interpretation of results. NM and COC produced first draft of manuscript. AP. OS, NS, and JC contributed to subsequent revisions. Critical revision of the manuscript for important intellectual content was done by all authors. Final approval of the article was done by all authors. NM is the guarantor. This research was supported by a grant from the Department of Health, Victoria. The research team were independent from the funders.

Conflict of interest

The authors declare no conflict of interest. NM and COC have full control of all primary data and will allow review of data if requested

Author information

Authors and Affiliations

  1. Department of Pain and Palliative Care, Peter MacCallum Cancer Centre, Peter Mac, Locked Bag 1, A’Beckett Street, Victoria, VIC, 8006, Australia

    Natasha Michael

  2. Department of Pain and Palliative Care, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Clare O’Callaghan & Odette Spruyt

  3. Department of Oncology, The University of Melbourne, Melbourne, VIC, Australia

    Clare O’Callaghan

  4. Department of Medicine, The University of Melbourne, Melbourne, VIC, Australia

    Clare O’Callaghan

  5. HammondCare Palliative and Supportive Care Service, Sydney, NSW, Australia

    Josephine Clayton

  6. University of Sydney, Sydney, NSW, Australia

    Josephine Clayton

  7. Department of Psychology, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Annabel Pollard

  8. School of Population Health and Melbourne Medical School, The University of Melbourne, Melbourne, VIC, Australia

    Nikola Stepanov

  9. Department of Cancer Medicine, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Michael Michael

  10. Department of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    David Ball

Authors
  1. Natasha Michael
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  2. Clare O’Callaghan
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  4. Annabel Pollard
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  7. Michael Michael
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Corresponding author

Correspondence to Natasha Michael.

Appendices

Appendix 1: information on case scenarios for patients

It is important to note that these scenarios are examples of imaginary cancer patients. They are not intended to represent your own condition or how your own illness may progress, though there may be similarities. Some people are comfortable talking about the issues that arise in the scenarios that you will be reading. It is also possible that these examples may make you feel uncomfortable. If so, please inform the researcher immediately and we can end the interview or provide support. You will be offered the opportunity to ask questions or obtain further support at the end of the interview.

Case scenario 1

You have been diagnosed with cancer in the last few weeks. At this stage, the cancer is limited to one area and has not spread. The diagnosis comes as a great shock to you and your family.

You still feel well and are able to perform all your normal activities. You can think clearly and are able to continue working. Family and friends tell you that it is hard to believe that you have been diagnosed with cancer. You are waiting to be seen by a cancer specialist to discuss options for treatment of your cancer. You are planning to proceed with any treatment that is offered to you.

Case scenario 2

You have cancer that has spread from its original site. You have seen a specialist and have had one serious infection related to your chemotherapy treatment. You become very unwell and require admission to an intensive care unit. The doctors may plan surgery to remove the tumour if you show a positive response to chemotherapy. They explain that there are some risks associated with having surgery. This may include time spent in an intensive care unit under sedation.

You feel tired following chemotherapy but otherwise feel reasonably well.

Case scenario 3

You have cancer that has spread to your liver and areas of your brain. You have completed standard chemotherapy and have now been offered a drug on a clinical trial. The oncologist has explained that this is experimental treatment. You occasionally feel confused and need some help with dressing and feeding yourself. The doctors are going to give you some radiotherapy to your brain and have said there is a slight chance of improvement in your condition. You are able enjoy time with your family and friends but get tired easily and have given up your job. You have no pain but have lost weight.

Case scenario 4

Your cancer is now very advanced. You have completed all available treatment to try and control the cancer and now spend increasing amounts of time in bed. You have pain that is controlled with regular medication. You sometimes feel sick or short of breath and also require medication for this. You are now eating and drinking very small amounts. The doctors have told you that you are very unwell. You have friends and family who are very supportive.

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Michael, N., O’Callaghan, C., Clayton, J. et al. Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice. Support Care Cancer 21, 2195–2205 (2013). https://doi.org/10.1007/s00520-013-1779-6

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  • DOI: https://doi.org/10.1007/s00520-013-1779-6

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