50 Years of advance care planning: what do we call success?

Abstract

Advance care planning (ACP) is promoted as beneficial practice internationally. This article critically examines different ways of understanding and measuring success in ACP. It has been 50 years since Luis Kutner first published his original idea of the Living Will, which was thought to be a contract between health carers and patients to provide for instructions about treatment choices in cases of mental incapacity. Its purpose was to extend a patient's right to autonomy and protect health carers from charges of wrong-doing. Yet, it can be doubtful whether different types of ACP achieve these goals rather than aiming at secondary gains. My discussion suggests that the current promotion of ACP is not always engaging critically with the original ACP intentions and may even pursue notions of success that may run contrary to respecting autonomy. The risk of this may especially be the case when high participation rates are taken as indicators of success for institutional ACP programs. I further suggest that Kutner's two original aims of protecting patient autonomy and preventing charges of wrong-doing are near impossible to achieve in conjunction, because their simultaneous pursuit fails to acknowledge that patients and carers have opposing needs for reassurance about possible judgment errors. I conclude that the most realistic idea of success of modern ACP is an acknowledgement of the importance of ongoing dialogue about what constitutes appropriate care and a diversity of aims rather than any kind of advance, contractual insurance in the face of controversy.

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Notes

  1. 1.

    The terms 'Living Will', 'advance directive (AD)" and "instructional directive" are used synonymously in this paper, unless otherwise indicated.

  2. 2.

    The term DNR order also appears internationally in different guises. Some similar terms encountered in the literature are: DNAR (do not attempt resuscitation), NFR (not for resuscitation), no CPR (no cardio-pulmonary resuscitation), AND (allow natural death). There are also more specific orders about withholding nutrition and other specific treatments, which I will ignore in this discussion.

  3. 3.

    POLST orders are only in use in the US and are aimed at extending hospital communications and orders into the community

  4. 4.

    and many experts doubted that this outcome could actually be measured

  5. 5.

    Medical PoA is a term in common use in Australia. An American equivalent would be DPoAHC (Durable Power of Attorney for Health Care) and LPOA (Lasting Power of Attorney) is the UK equivalent.

  6. 6.

    These kinds of measures concerned 4 out of the top 5 considerations identified by the Delphi panel mentioned above: they were divided into process outcomes and action outcomes

  7. 7.

    Program oriented analyses aim at more pragmatic elements of application, rather than an appraisal of successful ethics, although the two obviously share some common factors.

  8. 8.

    Dr. Hames, one of its chief developers became instrumental in many international ACP initiatives and the Respecting Choices program became an influential ACP model for many health networks, e.g. Austin Health in Victoria. (https://www.austin.org.au/Assets/Files/RPCNewsletterSpring2009website.pdf)

  9. 9.

    By relevant sense I mean a benefit that the patient would actually choose. It could be imagined that ACP may bring about some good that a person has rational reasons to prefer in general, e.g. saving public resources. But if this is not a good the patient actually chooses, because she would rather have the resources spent on her, then the good, albeit objective in some sense, is not consistent with her actual choice and hence contrary to the central idea of ACP.

  10. 10.

    This worry pertains to the identity problem of ACP, which is well known to philosophers, but less often discussed in personal or clinical ACP discussions. Nonetheless it constitutes an ethical problem that does prevent some people from leaving specific instructions about value or treatment preferences. The problem at heart is that a directive can only apply to the author herself. Yet if a person believes their personal identity is tied to their psychological continuity (which ceases when losing decision-making capacity) then the directive can no longer apply. This is, because the psychological change is equivalent to the psychological death of that person. The ongoing individual who exists in the continuing body becomes someone who cannot be ethically bound to the values and directions of the old psychological inhabitant of that body.

  11. 11.

    One may also note, that there is a potential difference between ACP participation rates and ACP completion rates, and that it is not always clear which of the two is referred to. Participation, may simply be a contact with an ACP facilitator within an institutional setting, but it may also refer to the completion of a written document of some kind within a facilitated program or independent of any facilitation process.

  12. 12.

    This presupposes a largely individualistic account of autonomy, which is still the predominant idea in public legal discourse. Relational accounts of autonomy may view the familial aspect of agency quite differently. This introduces yet another complication to the discussion, that is worthy of consideration, but cannot be dealt with here.

  13. 13.

    as was suggested by White at al. in their repeat Australian survey of ACP prevalence in 2019

  14. 14.

    Outcome may be understood in two different ways: whether a wish as expressed in an ACP was accurately reflecting the patient’s preferences at the time it was acted on, or whether a documented wish was complied with. I take outcome here to mean the former. The latter sense is discussed further on.

  15. 15.

    Although the action of not following the directive may be justifiable based on other ethical principles

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Knight, K. 50 Years of advance care planning: what do we call success?. Monash Bioeth. Rev. 39, 28–50 (2021). https://doi.org/10.1007/s40592-021-00127-3

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Keywords

  • Advance care planning
  • Autonomy
  • Living will
  • Power of attorney
  • End of life care
  • Sorrugate decision making