A shift in emphasis: The process of advance care planning

The negative data from the numerous studies exploring advance directives has encouraged a move to broaden the approach of determining patient preferences regarding health care, particularly at the end-of-life. The focus has shifted to the development and evaluation of programs designed to educate health professionals and patients to consider advance care planning (Hammes & Rooney, 1998).25 Advance care planning is a process involving discussion, reflection, and communication of treatment preferences for end-of-life care (Miles, Koepp & Weber, 1996). Hammes and Briggs (2005) argue that the process is not merely the completion of an advance directive, rather wider considerations are necessary because the skills required to initiate and continue conversations regarding end-of- life decisions, are far more complicated. Health professionals need to take time to explore patient understanding, values and experiences (Hammes, 2001). This requires skills in active listening and facilitation (Briggs, 2002). The process requires

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See Chapter 8, especially 8.3.1 Determining patient competence and 8.4 Discussion. 25

Dr Hammes developed a widely published ‘Respecting Choices’ program in La Crosse, Wisconsin following his research study in the mid 1990s.

the ability of health professionals to initiate conversations for differing patients, providing information that is unique to each situation, and assisting patients to weigh the benefits and burdens of therapy, and to then translate these into specific treatment decisions (Hammes, 2001).

From the patient’s perspective the process ideally comprises several features, including:

(i) from the patient’s perspective, a good understanding of the medical issues and choices available, as well as the identification of relevant personal goals and values,

(ii) reflection on what choices best represent what is important to the patient, and (iii) a clear communication and interaction with others who are likely to be

involved in those future decisions.

This includes the selection of a suitable proxy decision-maker (Hammes & Briggs, 2005). It is an informative decision making process, requiring interaction between the health professionals, in particular the medical practitioner and the patient, rather than a mere one-off signature on a consent form (Emanuel, Danis, Pearlman & Singer, 1995). It is also important to ensure discussions are ongoing throughout the continuum of care. This requires health professionals to review therapy plans with patients or proxies on a regular basis (Hammes & Briggs, 2005).

A randomized controlled trial was conducted in Canadian nursing homes in which the implementation of an educational program concerning advance care planning was studied (Molloy et al., 2000).26 The study highlights a number of findings and confirms that given the opportunity, competent residents and family members of incompetent residents, are willing to complete advance directives. The advance directives in the intervention nursing homes (those with the educational program), addressed the issues of life threatening illness, cardiac arrest and feeding options for

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reversible and irreversible conditions. As part of the advance planning, a personal statement was also completed by residents, in the intervention nursing homes, allowing individuals to specify which disabilities, as a result of their illness, they would accept or reject. The directives from these homes were found to be more comprehensive and specific when compared to directives completed in the control nursing homes (those without the educational program). Overall, the researchers found in the intervention homes there was a reduced hospitalization rate and implementation of aggressive care, for residents who did not want it. The researchers conclude that the educational program involving staff, residents and family members did result in clear instructions that were ultimately respected (Molloy et al., 2000). Vinen (2002) argues that whatever the process adopted by health professionals there is a need for patients to be encouraged to focus on planning in terms of outcomes, rather than the acceptance or refusal of specific treatments. Considerations could include acceptability of treatment in terms of quality of life, burdens of treatment and the probability of a good, or poor outcome. Lynn (2000) contends that much of the research in this area assumes that the course of care for patients results from decisions, which arise from discussions between patients or proxy decision makers, and physicians. She suggests that while this might happen, it is probably not the usual explanation for the medical treatment actually provided. Instead, Lynn suggests, the pattern of treatment is probably perpetuated in repeated types of care for patients, with a similar illness. In addition, she observes that teams of health professionals have learnt to do advance care planning more to prevent automatic responses to predictable emergencies, rather than focus on the enhancement of patient autonomy. Lynn argues that advance planning however, might be a good feature of care, to avoid emergency treatment in favour of more appropriate responses, although she believes that educating health professionals to promote discussions regarding end-of-life care is largely ineffective on its own. Further testing of processes and consideration of what could be done, and why it matters to patients, requires ongoing investigation (Lynn, 2000). This perspective highlights the limitations of research that considers advance care planning, and illustrates the need to extend knowledge further, to consider other aspects, including professional-patient interaction when determining acceptable therapy boundaries.