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11/15/2017

Communicating about cancer: a need for a closer look at Patient Empowerment

This post is written in response to Ubel, Scherr and Fagerlin’s target article, “Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy” published in the November 2017 issue of The American Journal of Bioethics.


by Jonas Landers, MA

Ubel and colleagues describe what is obvious from much other academic and non-academic literature: Patient empowerment (PE) receives much attention – today and already for quite some time. This is true for PE not only regarding cancer, but particularly chronic conditions that require continuous efforts by those affected to deal with their situation. While both the attention for PE as well as its relevance are high, the authors rightly point towards its shortcomings in practice, i.e. the failure to actually empower patients in ways that deserve to speak of empowerment.

However, and notwithstanding the authors’ contribution towards this shortcoming, it remains unclear how they define “patient empowerment” and how it differs from shared decision-making and patient autonomy – all seemingly crucial but barely illustrated concepts. This shortcoming reflects well an often-stressed concern about PE. To date, there is a lack of consensus about what PE precisely means and how a model for PE may look like that can be broadly agreed upon by researchers, health care professionals and public. Given the varying application in practice, PE runs the risk of not effectively improving the delivery of health care, which in turn hinders consistent evaluation of PE approaches.

Notwithstanding these current challenges, PE does still imply several characteristics that are equally highlighted across different research endeavors (for references see below). In the following, these  characteristics will be outlined shortly to then compare them against Ubel et al.’s suggestions for overcoming current “sources of empowerment failure.”

First, there is an individual perspective on PE, i.e. general (not disease-specific) skills and competencies ‘empowered’ individuals possess to deal with a specific condition and collaborate with medical professionals. This includes for instance the ability to identify personal needs, setting personal goals and developing a strategy for reaching the goals. As a kind of prerequisite, individuals need to be able to seek and apply relevant information, communicate their own situation clearly to others, and deal effectively with stress and emotions.

Also, it is argued that any information, diagnosis, discussion, etc. with health care professionals should be followed by practical steps, e.g. practicing, exercising a suggested measure, reflecting on what has been discussed with the doctor, and assessing options for change. The individual aspect of PE is crucial as individuals, patients, etc. ultimately need to identify what is most important for them in order to utilize resources and skills (self-determination) – doctors, and this is also argued by Ubel et al., may not always be able to estimate their patient’s needs and priorities correctly.

Besides the individual perspective on PE, there is what may be called a relational perspective. This second level relates to the health care professional’s role and responsibility towards supporting empowerment and establishing a positive mutual relation towards the patient. Central aspects are the creation of an atmosphere that helps patients to better apply their resources as described above, providing emotional support when necessary instead of mere information and factual advice, and allowing sufficient time and the possibility for the patient to gain their own experiences in dealing with a potentially life-changing diagnosis.

For a beneficial relation to be built, it may be equally important to promote conditions under which patients are actually able to bring in their own resources as part of a mutual relation. This may include creating a feeling of security (for instance by clearly communicating that the patient is always welcome to communicate concerns or fears), motivating the patient to actively contribute to the treatment and, lastly, emphasizing the relation by conveying a message of shared-responsibility (for references on the latter paragraphs, see e.g. Aujoulat et al. 2007; Bravo et al. 2015; Fumagalli et al. 2015).

The list of individual and relational aspects of PE may easily be enlarged. We have described the previous characteristics or maybe rather ‘prerequisites’ for PE to stress some central aspects of enabling patients to develop and use own skills, giving them an active role in the process of handling a disease, and creating the necessary conditions for these aspects to be realized. Ubel et al. address a range of “failures” that underline the relevance of the above-mentioned individual and relational aspects, such as the failure to recognize patient preferences, failure to account for patient’s emotions, and failure to activate patients. However, the suggestions made do not straightforwardly account for the patient’s resources and skills that could be used when promoting an active role of the patient.

Hence, the suggestion to assess patient’s baseline understanding of disease and treatment may be more effective when provided with (access to) information/learning resources either before or after talking to a doctor. Recent research suggests that patients make better decisions about cancer screening when having access to evidence-based information instead of relying only on the information provided by the doctor (Wegwarth et al. 2017). Further, providing the opportunity to “teach back” what has just been told may be difficult as soon as the patient is overwhelmed with the amount of information received or the severity of the diagnosis. Rather, or at least in addition, patients may be motivated to self-reflect after the doctor’s appointment on their own role in the process of treatment, understanding of the current situation and expected challenges/concerns and communicate what they learned from this process in the follow-up.

Last, assessing patient’s preferences does indeed account for the failure to rely only on the best alternative from a medical perspective. However, it will be crucial to actively involve the patient in the development of treatment and coping strategies after having assessed the preferences. This may be relevant not only to increase compliance, but to avoid the entire responsibility to rest solely on the doctor’s side.

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