In this study, we examined narratives of experiences of participation in medical decision care in DM patients and it exposed some gaps associated with patient participation practice in medical DM clinical encounters. This paper discusses the gaps including: i) unfavourable ambience for participation, ii) insufficient bidirectional informational exchange and iii) inconsideration for patients’ preferences and values, iv) paternalistic power inclinations and, v) lack of evaluation of decisions made.
The non-inviting atmosphere for collaborative dialogue
Patients’ experiences of a non-inviting ambience to participation in medical decisions is significant in this study. Cubaka et al, in their study describe that in a truly collaborative patient -provider interaction, inviting patients to a discussion is preliminary and core. There is evidence suggesting that patients are likely to participate if they are solicited, perceive a conducive environment where mutuality thrives, and genuinely feel safe and empowered to participate (2,13,20). The patients in our study however describe dynamics of interactional process as fearful and dismissive; thus precluding them from engaging the providers in care even when they desired to or felt capable to.
Patients reported to perceive implicit anger from providers when attempts are made to engage with providers in a dialogue. Patients further presumed that the providers’ anger would result in being denied a good service. Thus patients opt to assume subservient and unknowledgeable roles in order to obtain the care for the day(12). In a study by Ekdahl et al on elderly patients, they reported patients’ passivity in relation to decision making. However, it was found that the passivity was related to fear of their providers reaction if they engaged in asking questions.(14) The stated experience highlights a failed therapeutic patient -provider relational ambience where patients do not feel safe enough to contribute or question about their care(10,15).
While the patient -provider power imbalance seems inevitable in clinical encounters, it is a reported drawback for lack of patients’ participation(9,10). Due to socio-political predispositions, patients in this study perceive that providers are a superior and unchallenged authority; and that their role should be a subservient, grateful recipient of care. Even though few patients reported insistence to be consulted about decisions made, the majority expressed lack of power and assertiveness to request participation. The lack of assertiveness can be corroborated in a study by Peek et al who studied patterns of decision making among DM patients from an ethnic minority. They noticed that patients’ low medical literacy, poor socio-economic status (SES) and unawareness of their decisional freedom were some factors associated with low confidence to request for participation in decision making in ethnic minority groups(12,16). Additionally, that there was perceived power imbalances tilting against the patients; that was exacerbated when services are free and patients feeling that their health care is a privilege and not a right(16). Further, the imbalance left their providers to assume that they had inadequate capacity for meaningful engagement(10,16). Thus, these studies highlight the need for provider attempts to level the power balance through a cultural shift that allows providers to acknowledge that patients are also experts in their disease (9,13). Then, regardless of patient factors, solicitation of patients for participation and creating a participative ambience ought to be the provider’s initiative.
Inadequate reciprocal informational exchange
Insufficient bilateral information sharing between the provider and the patient is apparent in the narrated experiences. Most patients in the study yearned for an opportunity for dialogue with their provider about their illness, its treatment and available options. Reciprocal information exchange is recorded as mandatory if patients are to engage meaningfully in medical decisions (10,20). Factors deterring informational exchange include limited time, provider attitude, perception of low medical literacy, socio-cultural tendencies that perpetuate patient passivity (11,20).
Often, interactional time constraints has been cited as a deterrent to satisfactory dialogue; perpetuating hurried and dismissive interactions 10,11). In a systematic review of 38 studies on sharing medical decisions by Thompson-Leduc et al, it showed that time constraint was cited as a deterrent to SDM in 22 out of the 38 studies (24). This confirms that interactional time is often limited; thus, a deterrent for adequate informational exchange. However, in a study done by Karel M et al on veteran mental health patients, they showed that the additional interactional time spent if the provider attempted to allow patients to participate in decision making only increased by three minutes (25). They further alluded that the practice of allowing patient participation is possible and cost-beneficial. Within the time constrained settings such as Malawi, the perception that information sharing is time consuming may seem legitimate (11,26). However the gains from informational exchange have potential to improve patient-provider concordance, patient responsibility for self-care and trust. Additionally, potential to reduce unwarranted retreatments, and tilt power balances towards the patient (13,22). Thus, the cost-benefit of the extra interactional time ought to be weighed in light of the resultant paybacks such as self-care, patient satisfaction and improved quality of life. We therefore suggest future studies on cost-benefit analytical studies that would elucidate the cost averted with adequate informational exchange that results in patient enablement and empowerment.
Presumed readiness and low medical illiteracy is also a recognized deterrent to patient participation(3,10,17). Patients in this study believe that their providers assume they are not ready or have insufficient capacity to engage in meaningful informational exchange. However, patients indicated they had enough capacity and experiential insights which they would love to share with the provider towards identification of the problem and exploring possible solutions. The experience is similar to a study by Ekdal et al confirms that providers perceived or were not sure to what extent their patients are ready and have capacity to participate in a dialogue(14,18). The reviews therefore encourage explicit communication to establish concordance as to what extent their patients are willing and have capacity to engage on in decisions. Regardless of medical literacy level, patient’s preferences of participation is to be explored. After all, Elywin et al record that most patients do not necessarily oppose participation in care rather it’s the extent that matters (7). It is through the explicit dialogue that the individual patient desired level of participation will be delineated and those willing but have low capacity will be identified.
Inconsideration for patients preferences, values and capabilities
We notice that patients express lack of being acknowledged as experts in their own disease; asserting that providers disregard of patients’ opinion. Consequently; patients feel uninvolved in exploring solutions to their own problems. The need to be acknowledged as experts can be confirmed in Lyles et al’s editorial , who reported that patients yearned to feel that they have power to give their opinion and that it matters; that their capacities can be incorporated in care plans (19). Such a stance is achieved when the ambience is marked with genuinely trusting relationship. Castro et al in his narrative further admonishes paternalistic tendencies, acknowledging of patients expertise and capabilities in care as an attribute towards patient empowerment(4). Thus, inherently, individuals have the capacity to decide what is best (4,26,27). The acknowledgment of patients’ expertise has potential improve patient responsibility, satisfaction, and concordance.
Paternalistic power inclinations
Patient enablement is regarded as a critical and ultimate goal to PCC provision; tilting the power balances towards the patient (4,22) Empowerment follows from deliberate efforts to invite patients to a discussion table and information sharing that leads to co-exploration of treatment options rather than validation of provider suggestions. Further, acknowledging and enhancing patient competencies; thus improving self-efficacy (23). In this study the experience showed that fear, patient trust in the provider, lack of support for empowerment and exploration patient preferences and lack of appreciation that patients as experts in their disease are some of the reasons that support disempowering paternalistic tendencies.
Enabling interactional dynamics are known to be highly dependent of the socio-cultural context (9,24). Paternalistic tendencies are quite common in authoritarian cultures where decisions tend to be provider-led and patients assume a passive role (12). In this study, some patients felt that it was inappropriate and socially unacceptable to engage in a dialogue with their provider even when some decision made were not favourable. Poor SES, low medical literacy, fear of being denied services especially where services are free are some of the factors associated passivity in decision making(25). In a Tanzanian study, patients felt that providers were an authority that cannot be questioned and need to be trusted(10). Therefore, in cultural settings such as Malawi where social values are inclined towards paternalism and public services are free; it is the providers’ responsibility to intentionally tilt the power balances to enable patients for participation.
Patients in this study present both fear and trust with their providers as reason for assuming a passive role in medical decisions. This finding can be validated by a qualitative study done on dialysis patients by Aasen et al who reported that the overbearing provider dominance in medical decisions lead to patients feeling unrecognised and powerless(26). Their study added that; due to the realisation of their powerlessness over decisional control. Consequently, patients felt pushed into a disadvantaged perspective; a situation that obligated them to a submissive stance in order to win the favours of deserved care and feel safe from deliberate mistreatment (26). Thus, patients had no choice but to put their supposed trust in the provider. The cycle of powerlessness and passivity sadly then, gets perpetuated. The reported trust and submission in our study therefore, may not be legitimate, rather emanating out of powerlessness to the provider authority. Further studies are therefore are required to explicate the depicted trust.
Lack of evaluation for suitability of decisions made
While some patients indicated that they trust provider-led decisions during the interaction, the findings in this study highlight that some decisions are still perceived inappropriate or unacceptable. Without explicitly questioning the provider, some patients reported to fail or choose not to adhere to such care decisions. Thus, highlighting the lack of mutual evaluation of care plans for suitability with individual and context situations. In spite of this theme being small in this study, Serrano et al therefore stresses that the pertinent role of patient participation in decisions making is examining for suitability of care through individualisation and contextualisation of such plans (22). Highlighting that, while being evidence based, care plans need to be co-evaluated for alignment to the experience and complex individual situations. This has potential to enhance adherence, concordance and ultimate satisfaction with care.