Person-Centered Care in Glioblastoma: The Art of Early Advance Care Planning

TL;DR

This paper emphasizes the importance of early advance care planning for glioblastoma patients to ensure their medical decisions align with their values and reduce the burden on families.

Contribution

The paper highlights the ethical and practical necessity of integrating early advance care planning into standard glioblastoma care.

Findings

Early advance care planning is associated with less aggressive end-of-life care and improved quality of life for patients and caregivers.

Clinician discomfort and lack of training are major barriers to implementing advance care planning in glioblastoma care.

Using tools like the REMAP framework and involving allied health providers can enhance the effectiveness of advance care planning discussions.

Abstract

Advance care planning is a crucial component of patient-centered care for patients with serious illnesses. This is critical for patients with glioblastoma due to the terminal nature of the disease, as well as the potential for rapid decline and early cognitive dysfunction, which can negatively impact decision-making capacity. Benefits and barriers to advance care planning conversations are well documented, but there is little prospective research in patients with glioblastoma. Providers who care for patients with glioblastoma should understand the importance of advance care planning, develop comfort with these conversations and be aware of various roadmaps and tools to enhance the process.

Advance care planning (ACP) is fundamentally important for patients diagnosed with glioblastoma (GBM), a highly aggressive primary brain tumor with a grim prognosis. The urgency for early ACP is profoundly amplified by the characteristic, progressive neurocognitive decline that frequently impairs critical reasoning and leads to the loss of decisional capacity. ACP is a proactive process ensuring that future medical interventions align with a patient’s deeply held values and goals. Proactive ACP discussions are associated with less aggressive end-of-life (EOL) care, improved quality of life for patients and care partners, earlier hospice enrollment, and reduced psychological distress for surrogate decision makers. Despite guidelines recommending early integration, ACP prevalence remains low due to clinician discomfort with EOL discussions, a perceived lack of adequate training, and a widespread “culture of shared avoidance”. Experts recommend initiating ACP at or shortly after diagnosis, normalizing it as standard cancer care. Using structured communication strategies, such as the REMAP tool, and empowering allied health providers to champion these conversations are key integration strategies. Ultimately, early and skillful ACP is an ethical imperative that safeguards patient autonomy and minimizes the burden on loved ones.

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