Advanced care planning: less form in favor of more substance

Modern advanced care planning (ACP) is a process centered around high-quality communication between patients, caregivers/surrogates, and their clinicians about understanding the diagnosis, prognosis, and treatment options with respective goals (curative versus noncurative/palliative intent) then eliciting goals and values to establish a concordant care plan open to revisions as the illness progresses and goals change.¹ ACP evolved from an earlier initiative encouraging people to complete advance directives—documentation of their preferences regarding life-sustaining medical interventions such as mechanical ventilation and designation of a surrogate for medical decision-making—with the intent of reducing unwanted medical interventions at the end of life.² However, research has demonstrated the completion of an advanced directive form and ACP occurring as single events for people living with advanced care are ineffectual in changing psychological distress and end-of-life outcomes.^2–5

The iterative process of ACP was developed to prepare patients and surrogates for making end-of-life decisions by ensuring surrogates are intimately involved throughout precisely because the patient is anticipated to be unable to participate in decision-making late in their disease trajectory, especially at end of life. The surrogate will need to know what goals and values guided the patient’s decisions and what leeway the patient wanted to allow them in making decisions.¹ Thus, ACP is not intended to be a one-time conversation to create a static document and only to benefit the patient, but to be a recurring discussion over the course of the illness trajectory to allow for changing preferences, goals, and needs.^1,2 ACP involves complex clinician behaviors and high-quality communication skills, aiming to help people feel heard by their surrogates and clinicians alike^3,4 and to provide people with what they say is most important at the end of their lives: to be comfortable, in control and minimize burden on their families.¹

Fritz et al. report in the current issue on how the participants evaluated the acceptability, quality, and timing of their ACP pilot intervention as well as its the impact on patient and caregiver health-related quality of life, anxiety and depressive symptoms, satisfaction with care, and caregiver needs and mastery.⁶ The authors also re-evaluated if the timing of ACP intervention after radiotherapy with concurrent TMZ was optimal and assessed utilization of specific healthcare resources. The ACP intervention was delivered in one session with an optional second session by one nurse specialist involved in their care trained to be the facilitator. The study sample included 18 patient–caregiver dyads, 95% of whom were diagnosed with IDH-wt glioblastoma, receiving neuro-oncologic care at the same medical center in the Netherlands, plus 2 caregivers. Notably, ≥20% attrition in patients and caregivers occurred from baseline to the last assessment.

With 78% of enrolled patients evaluating at least once post-intervention, most favorably reviewed the quality and indicated all important topics were adequately covered within an appropriate number of sessions. With 85% of enrolled caregivers evaluating at least once post-intervention, most rated the program’s quality favorably and reported all important topics were covered except three who reported topics were missed without stating which ones. And most, but not all, reported the topics as acceptable and covered to the appropriate degree within a satisfactory number of sessions. Suggested improvements by caregivers included separate sessions for patients and caregivers, reflecting different informational needs; providing less information at once and asking participants which topics they want to discuss, indicating communication could be further optimized; and more focus on positive aspects of the disease, reflecting a need for coping support.

Patient self-reports of health-related quality of life were largely stable across assessments, while anxiety and depressive symptoms post-intervention worsened from baseline to last assessment. Caregivers, in the setting of high caregiver mastery and low support needs scores, also reported increased anxiety and depressive symptoms across assessments. The ACP intervention did not meaningfully improve surrogate post-intervention satisfaction with care, particularly exchange of information between providers and information provided on overall supportive services available. Additionally, re-evaluation of the optimal timing of ACP program yielded widely variable results with only 36%–38% consensus between patients and caregivers for the after chemoradiation timeframe, with more caregivers preferring ACP at diagnosis. Lastly, referrals to palliative care for co-management or palliative/hospice care for end-of-life care pre- versus post-intervention were not captured; however, patients continued to see their general practitioners and specialists at similar rates without increased referrals to emergency departments or hospitals.

Taken together, this ACP feasibility study involving similarly aged, mostly married men diagnosed with glioblastoma with spouses acting as caregivers within the healthcare system of the Netherlands re-affirms that single ACP conversations while necessary are very often not sufficient to durably impact patient- or caregiver-centered outcomes in the face of progressive disease, ongoing functional decline and psychologic distress, and that advanced directive completion does not meaningfully communicate or coordinate care. A 2021 systematic review reported ACP and PC are underutilized in the care of adult glioblastoma patients and focused, high-quality studies evaluating ACP, PC and hospice utilization are lacking.⁷ The design of such studies should consider measuring surrogate-centered outcomes in addition to provider-level outcomes such as healthcare service utilization and anticancer treatments in the last stage of life, as suggested in the oncological literature.⁸

People with advanced cancer and their surrogates have different and changing communication, informational and support needs. There is no substitute for ongoing, high-quality communication centered around the person’s illness experience led by their trusted clinicians who has a good fund of medical knowledge about their illness and provides coping support for the physical, emotional, psychological, and existential effects of the illness.^9,10 Indeed, people with cancer tend to favor more intensive cancer-directed interventions proximal to their diagnosis and more quality of life-focused care as their cancer progresses and they become more ill. Adding more substance to ACP interventions by expanding from single into multiple sessions and providing coping support as done in specialty palliative care contexts may be key to providing the multifaceted support people living with glioblastoma and similarly aggressive CNS tumors and their caregivers need from their primary neuro-oncology teams.^9,10

Funding

None Declared.

Conflict of Interest

None to disclose.