FormalPara Key Summary Points

Decision paralysis (DP) is an increasingly recognized phenomenon by which patients are unable to choose one physician and/or initiate appropriate treatment.

When patients experience DP, they often undergo a search for second opinions which may result in initiating care at more advanced stages with more aggressive interventions than initially warranted.

There is a scarcity of research on DP, with no guidelines to enable recognition and rectification—especially for diagnoses that do not possess clear, established treatment algorithms.

Physicians may begin to address this issue with their patients in a supportive manner by employing our described patient-centered framework for discourse.

Identifying DP can foster patient–physician collaboration and streamline plans for longitudinal treatment, potentially improving the patient’s prognosis and lived experience.

Introduction

A patient recently arrived at our clinic to follow up on his diagnosis of cutaneous T-cell lymphoma (CTCL). His visits to our clinic have been sporadic, as we are the sixth specialist team that he has sought for second opinion. This “specialist-seeking” approach has led him to top physicians in New York City, the Northeast, and even internationally. Three years following initial diagnosis, he has yet to commit to one physician for continuous care and meaningful treatment of his cancer.

His story strikes as an unfortunate example of decision paralysis (DP), an increasingly recognizable phenomenon observed in several of our patients diagnosed with this rare cancer and other chronic diseases. It can be defined as an inability to choose one physician and/or initiate appropriate treatment. An incessant search for second and third opinions delays treatment, allowing for disease progression and thus leading to more aggressive interventions than initially warranted. For example, our patient’s 3-year treatment delay is regrettably accompanied by disease progression: he now has Sézary syndrome, an aggressive leukemic form of CTCL. Initiating care at this advanced stage greatly limits his options and worsens his overall prognosis. In an effort to tightly manage his care, the patient had ironically relinquished much of the control to the disease.

The patient–physician relationship holds considerable influence on patient well-being and can alleviate traumatic aspects of decision-making. Despite the prevalence of DP among patients suffering from oncologic or chronic conditions, there are no guidelines that enable recognition and rectification of this condition; this is particularly relevant for conditions without clear, established treatment algorithms. This practical approach highlights the issue of DP, empowering physicians to act through recognition and patient-centered discourse framework informed by narrative literature review. Identifying DP and intervening through discussion can foster patient–physician collaboration and streamline longitudinal treatment, potentially improving both the patient’s prognosis and lived experience.

Medical Ethics and Origins of DP

Normative medical ethics shifted ownership of medical decision-making [1] away from being paternalistic, borne exclusively by physicians [2]. Medical ethics introduced the concept of patient autonomy by acknowledging the clear violation of patient dignity and human rights [1, 3]. The World Medical Association’s International Code of Medical Ethics declares patient autonomy as treatment decisions primarily made by the informed patient [4]. More recently, the World Psychiatric Association issued The Madrid and The Kobe Declarations, affirming core values of mutual respect and cooperation [5, 6]. This introduced the third perspective of reciprocity, promoting shared decision-making among patients, families, and close contacts.

Allowing for these rights and encouraging patient dignity is a liberty that should certainly be celebrated; however, with such freedom often comes the increasing potential of further deliberation and subsequent delays in treatment. As American psychologist Barry Schwartz argues in his book The Paradox of Choice: Why More Is Less [7], the dramatic explosion in choice has paradoxically become a problem instead of a solution. Although considering many options and attempting to reach consensus among family members is with good intention, these unvarying discussions could easily reach a point of diminishing returns.

In addition to external influences, complex perceptive and emotional processes impact decision-making. A key component in analyzing DP is understanding why patients believe they need to search for these many opinions. For example, some patients may not appreciate the severity and time-sensitive nature of their disease: patients are more likely to delay treatment initiation if they do not experience a high “state of anxiety” upon diagnosis [8]. Additionally, patients with poor knowledge and comprehension of their cancer symptoms were found more likely to delay treatment. Furthermore, seeking a second opinion can empower patients grappling with a new, potentially life-threatening diagnosis [9,10,11,12,13]. However, this process may further contribute to indecision surrounding their condition. The assurance from seeking multiple physician opinions could easily lure patients toward an endless loop of answer-searching to no avail.

Recognition of DP

Recognition of patients experiencing DP is the first step toward improving therapeutic outcomes. DP is especially prevalent among patients with oncologic or chronic medical conditions. A noteworthy sign of DP is a sporadic pattern of physician intake visits, especially when occurring at multiple institutions. Moreover, it is not uncommon for patients to visit multiple specialists who collaborate with one another. Such specialists may even work together within organizational networks and research, particularly for treatment of rare conditions. This collaboration offers great potential for early recognition of DP.

If the patient–physician relationship is not a sufficient source of stability for the patients, DP can lead to what is colloquially known as “doctor-shopping behavior” (DSB) [14,15,16,17]. DSB can thus further impede initiation or continuation of treatment. DSB is not exclusive to the diagnostic stage, but rather has been shown to occur throughout treatment for hepatocellular carcinoma, for example [18]. A subsequent delay or postponement of decision, despite receiving similar physician opinions, should call physicians to action. It is therefore critical that physicians foster trusting and respectful relationships with their patients as they guide them through both the obstacles of their diagnosis and tendencies toward DP [19].

Call to Action: Toward Patient-Centered Discourse

With scarce research on DP, there are no guidelines to enable recognition and rectification of DP—especially for diagnoses without clear, established treatment algorithms. We aim to highlight this issue and propose a framework for supporting patients experiencing DP: an approach to discourse that will provide physicians a foundation upon which they can further build the conversation. This framework is informed by insights gleaned from clinical patient experiences and narrative literature review conducted through PubMed search (using this article’s keywords). This article is based on previously conducted studies and does not contain any new studies with human participants or animals performed by any of the authors.

Moreover, the need for incorporating these discussion elements may change over time, in line with patients’ informational needs over the course of their disease [20]. Physicians should thus be prepared to host such discussions throughout the continuum of disease. Recognizing visit time constraints, physicians may choose to incorporate some or all proposed elements of discussion. With prospective examination of the phenomenon of DP, action can be made toward deriving optimal recommendations in the future.

Opening Conversation

Patient motivations for seeking a second opinion include perceived need for certainty or confirmation, lack of trust, communication dissatisfaction, and need for personalized information [10]. Space must first be held for this discussion during a clinical visit. After addressing a visit’s agenda, the physician may openly ask about perception of condition and care (Fig. 1A). Next, they may inquire about observing a history of recent outside clinic intake visits (Fig. 1B) with a frame of curiosity, rather than condemnation.

Fig. 1
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Discussion prompts for patient-centered discourse on DP. These prompts may be used by physicians to address DP throughout the patient visit

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Eliciting Patient Perspective

Open elicitation of patient perspectives allows for understanding of intentions (Fig. 1C). It is important to patients with oncologic, rare, and/or chronic illnesses that their perspectives are heeded. Research shows perception of communication and treatment experiences influence the ways in which patients seek information [21]. This affects the information that patients seek, their comprehension, and need to seek information elsewhere to compensate. Repetition of the patient’s viewpoint ensures comprehension, allowing the patient to clarify any ambiguities or misunderstandings (Fig. 1D). This assurance encourages trust in the physician and the physician’s recommendations [21].

Meeting the Patient in Conversation

Next, the physician imparts perspective, potentially through engaging in “Q&A” (Fig. 1E, F). The physician may ask if the patient would like to learn about DP trends, its implications in prognosis, and options for DP-based care. Afterwards, the patient is welcomed to share any thoughts or inquiries (Fig. 1G). Research shows patient–physician communication during oncological second opinions can be insufficiently aligned, so effective communication and open discussion requires explicit support on managing expectations [22].

Steering and Support

Following physician input, the conversation is directed towards final thoughts (Fig. 1H). The patient expresses final wishes to proceed, highlighting a physician and/or plan for future care coordination. It is possible this conversation has not yet yielded final opinions; this is an opportunity to express continued support not contingent on any approach (Fig. 1I). Beyond clinical uncertainty and dissatisfaction, second opinion-seeking patients are also often influenced by family, friends, and online recommendations [23]. Open conversation allows the physician to gain insight into the patient’s individual situation and influences. The physician is therefore able to cater their suggestions to the patient’s unique circumstance, curbing further incidents of DP.

Action Items

Following discussion, action items may be formulated (Fig. 1J). This step is important for patients remaining in the decision-making process. For example, patients can outline different plans in the form of a list of pros and cons. The physician may assist with these action items, explaining available options and their pros and cons in a manner that promotes shared decision-making [24].

Follow-Up

Follow-up is ideally soon: patients should be encouraged to set a deadline for the chosen course, lessening risk of “loss to follow-up” (Fig. 1K). Future appointments may revisit the assigned action items to best direct the patient towards care.

Conclusion: A Balancing Act

Given the importance of patient autonomy, patient DP can be difficult to broach. In consideration of the ethical pillar of non-maleficence, physicians promptly raising discussion on DP is within the patient’s best interest. Communicating the gravity of the situation must be balanced with the patient’s ultimate freedom in decision-making. Physicians may begin to address this issue in a receptive manner by employing our described framework for discourse. This framework may serve as a foundation for generation of a future uniform approach, particularly for the treatment of conditions without well-defined treatment algorithms. Future studies may investigate this approach’s clinical implications within the patient–physician alliance, and assess its impact on patients experiencing DP throughout the continua of disease.