Introduction

Shared decision-making (SDM) has been a topic broadly discussed in medicine, where ultimately the shift from paternalistic toward more patient-centered care is being more encouraged. The ideal of SDM involves patients and physicians discussing treatment options based on patients’ values, beliefs, and preferences, reaching a consensual decision¹,². The ethical guidelines of this approach rely on the principles of bioethics: patient’s autonomy, beneficence, non-maleficence, and justice. In the neurology field, especially Parkinson’s disease (PD), physicians encounter limitations when trying to apply this approach, this related to the cognitive decline and other complications that most PD patients suffer in advanced stages³. This leads to physicians questioning SDM applicability in reassuring what is best for the patient, tending to revert to a paternalistic approach⁴.

This review aims to analyze ethical challenges related to SDM in the context of PD patients through analysis of decision-making capacity, autonomy, and surrogates, and medical and patients’ preferences in the treatment context.

Decision-making capacity in PD patients: an obstacle for SDM

For a decision to be made, this must have been consent. This implies that patients had to be informed, choose voluntary, and had the competence to decide⁵. Problems arise with the population suffering neurodegenerative diseases, such as Alzheimer’s and PD, as the cognitive decline over years makes physicians question their decision-making capacity. In fact, studies evaluating this capacity in PD patients with cognitive impairment have found that, compared to controls, this population has deficits in this decision-making process³,⁶-¹⁰. Furthermore, within this capacity, domains affected mostly are understanding, reasoning, and appreciation, but no differences arise from choice⁸,¹¹. This means that a patient later on advanced stages could express a decision that is against his former way of reasoning and be additionally detrimental, thus making the physician, who has followed him/her along the progression of the disease, question, and put aside his/her preferences and consider weighing the principle of non-maleficence over autonomy.

On the other side, a study on non-demented nor cognitive impaired PD patients showed no differences in decision capacity compared to healthy controls¹². The main problem regarding this study lies on the prevalence of cognitive impairment in newly diagnosed PD patients, which is over 20%¹³. Hence, to ensure SDM in all stages of the disease, this implies the ethical need of awareness and screening for decision capacity in patients even at the first stages of the disease. Moreover, as the cognitive decline in PD follows a progressive course¹⁴,¹⁵, focus has been attributed on determining the existence of a window period of maximum decision capacity¹⁶. This is critical in the SDM process as this period can be used for (1) the physician to get to know the patients’ preferences, values, and beliefs related to treatment and (2) the family could be educated in the process of becoming a surrogate decision-maker alongside patient and physicians to ensure preferences are aligned.

PD patients with cognitive impairment or dementia suffer problems in understanding, reasoning, and appreciation areas of decision capacity. However, not all decisions are based on reasoning or logic. Some are made by applying values, emotions, needs, and habits¹⁷,¹⁸. Moreover, critics on the traditional approach of decision capacity assessment argue that this is more cognitive based, whereas emotional factors are left aside¹⁹-²¹. This has ethical considerations, as emotions and values are basic for human experience and for the acquisition of knowledge²², so a question arises: is it ethical to accept a cognitive impaired PD patient’s decision when this is based only on values or emotions? As these non-cognitive factors form part of the patient’s identity, if the non-maleficence principle is not infringed, autonomy principle must be respected. Nonetheless, this has two considerations (1) this might collide with what the physician thinks is best for the patient (beneficence principle). Here is where SDM and physicians’ empathy toward patients’ values comes into play, as this increases participation²³, and acknowledges differences in value attributions. Moreover, (2) as the patient is a social being, his/her identity is influenced by his interactions with others, implicating a role of a third party in the decision-making process.

Surrogate decision-making in advanced PD: the role of the third party

As the disease progresses, and PD patients are incompetent to decide for themselves, the individual approach to autonomy urges for advance care directives to be implemented²⁴,²⁵, where explicit patient wishes are heard and taken into consideration, and no interference of third parties is desired. However, problems arise with this approach. Only a few percentage of patients undertake these directives²⁶, and it may seem impossible to foresee all the possible clinical scenarios in practice²⁷. Moreover, a patient’s literal statement may be vague or prompt to different interpretations from relatives or physicians²⁸. Nonetheless, the main problem with this viewpoint of autonomy is that it views a patient as an isolated individual making an isolated decision, when he/she forms part of a social context, where interactions and interdependency with others are inevitable. Thus, surrogate decision-makers come into play, keeping PD patient’s preferences at the center of the process.

When contemplating the patient as a social being, his/her identity is thus seen as being influenced by others in a social trade-off. In this manner, the society’s and family’s values, beliefs, and preferences are imprinted in this identity. Van Nistelrooij et al. expressed this view as relatives being coeditors of the patient’s identity, shifting the concept of autonomy to a relational context²⁹. Consequently, choices regarding health problems are not to be seen as individual, but rather involving the help of the third parties, as these may aid the patient in showing an insight into his/her past, and present, being thus part of the decision-making process²⁵,³⁰. Following this logic, surrogate decision-makers, when being close relatives to the patient, constitute a door to patient’s values and preferences, making a substituted judgment. However, a systematic review on accuracy of surrogates’ decisions showed that these incorrectly predict patient’s preferences in one-third of cases³¹. Furthermore, another study showed that surrogates rely on other factors such as their best interest or mutual interest³², making physicians question the validity of the decision taken by these substitutes.

Nonetheless, a study showed that patients, when being unable to decide for themselves, weighed more heavily the loved ones’ input than physicians’ input³³. This could be understood as patients acknowledging relatives’ influence on their decision, as they share mutual interests, values, and beliefs. In fact, some articles share the idea that one’s personal interests are not only self-centered, but other’s centered³⁴-³⁷, adapting preferences according to intimates’ wishes³⁸. Rather than seeing this as a threat to the intrinsic value of autonomy, physicians should be aware of the relational context of this concept and aid surrogates on taking the best decision for the patient, pledging at all time to the beneficence principle. This implies that the decision, instead of being delegated completely to the family, is being shared by physicians and the latter, in a substituted interests model³⁹, where the clinical expertise and experience of the physicians, along with the knowledge of the PD patient’s values and preferences from the surrogates’ viewpoint, aid define the particular interests of the patient in a particular clinical scenario, fulfilling the patient’s full autonomy and fulfilling the beneficence principle. Sharing this decision implies from an ethical view that medical judgment reassures all bioethical principles are being considered, while relieving the emotional burden that surrogates may experience.

Physicians and patients’ preferences: the need for empathy

As new treatment modalities arise in PD, a physician might feel necessary to change to device-aided therapeutics, such as deep brain stimulation, subcutaneous apomorphine pump, or levodopa-carbidopa intestinal gel infusion, to improve motor or non-motor function, weighing harms, and benefits for their implementation. However, physicians may weigh these differently compared to patients⁴⁰, and their pledge toward maximizing benefit might impede listening what patients really want. A study showed that some PD patients focused more on optimizing the process of care, while others focused on improving motor symptoms⁴¹. Furthermore, another study concluded that PD patients might not want to undergo advanced treatments to obtain health improvements, as they might feel adapted to their current situation⁴². The latter could surprise physicians, and these could be prompted to question this decision, trying to convince patients of a specific treatment based on potential benefits, tending to an unwarranted paternalistic approach. The key to change this urge of paternalism dressed in the physician’s mind as beneficence is empathy. That is, in the SDM process, the physician should try to understand what the patient wants and what is more important for him/her based on his/her needs, placing his/her autonomy, in a relational context as discussed previously, as central for the decision process. Moreover, involving the patient in the decision-making process goes beyond ethical issues, as a study showed that PD patients who are involved have more treatment adherence⁴³. In this manner, interventions aimed at assessing and improving empathy process should be implemented not only in neurological residencies, but rather in all medical residency programs throughout all years, as a study showed that self-evaluated empathy in medical residents declines at the end of their training programs⁴⁴. By implementing educational programs that have proven useful in increasing empathy levels among medical residents and students⁴⁵,⁴⁶, the formation of future specialists that acknowledge the need of placing the patient’s preferences, needs, and interests on the front line could be reassured.

Conclusion

From the diagnosis and first encounter of a PD patient, assessing his or her decision capacity must be an ethical imperative for physicians, as in SDM, patient’s preferences are determining in modeling the conduct physicians would take for future encounters. That being said, medical judgments and patients’ preferences are not two opposing poles, where the physician calls on his/her expertise and experience, and questions decisions that diverge from his/her viewpoint, as this is implicitly an act of paternalism that leaves the patient’s autonomy aside. Rather, through empathy, these two should align toward the same direction from the first encounter, as this goes beyond ethical manners, improving quality of patient care. Moreover, in PD, as the patient’s decision capacity decreases, the inclusion of family members as surrogates is vital, as they provide an insight into the patient’s preferences, beliefs, and interests, being part of the patient’s identity. In this manner, the physicians, bearing into mind the patient’s beliefs and preferences, discuss with family members and share their expertise toward what’s best for the patient in a circumstance, and by doing so, fulfill the patients’ autonomy at all time.

This review proposes that it is not about questioning the patient’s autonomy in PD and considering the physicians’ judgment as better grounded, but rather, with the help of the family members, promote the understanding of the preferences and interests of the patient, reaching to a shared decision that places autonomy in the center of the decision.