From discovery to delivery: the spectrum of decisional supports for people with brain tumors

In “A scoping review: Understanding brain tumor patients’ decisional needs and preferences,” Bras et al¹ summarize the extant literature on shared decision-making (SDM) needs and aids for adult patients with brain tumors (pwBT). As the authors note, pwBT face decisions from the time of diagnosis (eg selection of cancer-directed treatment such as surgery, radiation, and/or chemotherapy, depending on tumor pathology) to the end of life (eg discontinuing cancer-directed treatment and other life-prolonging therapies). Yet, a limited understanding of prognosis, treatment options, and outcomes may contribute to pwBT receiving care they might not have chosen if they had been fully informed.

The authors thus conducted a scoping review in PubMed for articles (1) identifying the needs and preferences of pwBT regarding SDM and (2) evaluating decision aids and interventions for brain tumors. They included full-text articles, in English, on adult patients with gliomas (any grade), meningiomas, or brain metastases and conducted a narrative synthesis of results. They identified 26 studies relevant to the first study aim of identifying patients’ needs and preferences for SDM. The key findings related to 4 topics: (1) decisional role (ie patients’ preferred level of engagement in SDM): patients generally prefer an active role but acknowledged this attitude may vary with the complexity of emotion-laden decisions and limited treatment options; (2) treatment outcomes: the reviewed studies identified a variety of issues patients consider when weighing treatment options, ranging from logistical concerns to quality of life to life prolongation; (3) information needs: patients tended to want more information from clinicians, though with variability for difficult news such as prognostic information; and (4) practical and emotional support: decision-making for pwBT is emotionally burdensome and maintaining hope is of great importance. Six reviewed articles pertained to the second study aim of evaluating existing decision aids and SDM interventions. The reviewed interventions range from highly focused tools for conveying cognitive information (eg surgical plans or the risks and benefits of specific cancer-directed therapy) to rubrics for identifying patients’ goals and values.

Bras et al have done an admirable job summarizing the key findings of a heterogeneous set of studies on an extremely important topic. In this editorial, we will expand upon 2 key points that warrant further discussion. First, we highlight the full spectrum of communication between pwBT and their clinicians, including SDM—focused on specific decisions—and the broader category of serious illness communication. Second, we explore the role of palliative care in facilitating high-quality communication for pwBT.

Serious illness communication encompasses eliciting patient preferences for receiving prognostic and other relevant information; sharing the desired information and providing emotional support as needed; eliciting patients’ goals and values; and iteratively developing a care plan aligned with those goals. It ideally occurs longitudinally throughout the disease trajectory and is tailored to the clinical context and patient preference.² A consistent thread across topics identified in this review is the variability of patient preferences between individuals and at different points in the disease trajectory. This underscores the importance of integrating serious illness communication as part of routine cancer care to ensure that patients’ evolving informational needs are met. Focused decision aids may be effective and appropriate for specific interventions or treatments (eg tumor resection) or provide an efficient means of eliciting and documenting patient goals at a given point in time. However, these do not account for the changing needs and preferences of patients and caregivers, nor do they address the emotional support needs that were also identified by the authors. These are optimally addressed through longitudinal conversations (ie serious illness communication).

Neuro-oncologists typically have long-term, trusting relationships with pwBT, in combination with clinical expertise to conduct detailed and nuanced discussions about treatment decisions. Yet time constraints and limited communication training may be barriers to incorporating in-depth, emotionally supportive serious illness communication alongside managing cancer-directed treatment.³ Collaboration with specialty palliative medicine clinicians who have advanced training in serious illness communication may help facilitate high-quality comprehensive, longitudinal serious illness communication and SDM for pwBT. Early palliative care—a specialty providing patients and their caregivers with extra support for managing symptoms and coping with multidimensional suffering arising from the serious illness—integrated with usual, disease-directed treatment has been shown in other advanced cancers to yield improved serious illness communication documentation, as well as quality of life, patient and caregiver satisfaction, and quality of end-of-life care.^{4  ,  5} Yet pwBT are rarely referred to palliative care before the final weeks of life, if they are referred at all.^{6  ,  7} This care gap reinforces the false dichotomy that palliative care is only appropriate for those nearing the end of life. Of note, the authors state in the discussion that “[i]n certain cases, palliative care might provide a meaningful alternative [to cancer-directed treatment].” It should be clarified that palliative care is recommended for pwBT in conjunction with cancer-directed treatment.⁸ In the United States, it is hospice care—not palliative care—that is specialized and reserved for the end of life when patients are no longer receiving cancer-directed treatment. Further studies are needed to determine effective strategies for integrating palliative care into the unique clinical context of brain tumor care.⁹

We agree with the conclusion of this scoping review that more interventions are needed to adequately support pwBT (and their caregivers) in navigating the many decisions they face. SDM aids may be most useful and efficient for specific decisions, whereas serious illness communication guides, along with communication training for clinicians and referral to specialty palliative medicine may be more effective in meeting the evolving decisional needs and preferences of pwBT across the disease trajectory.

Conflict of interest statement.

None declared.