Neuro-Oncology Neuro-Oncology 18(1), 7– 8, 2016 doi:10.1093/neuonc/nov241 Advance Access date 29 September 2015
End-of-life care in patients with primary malignant brain tumors: early is better Tobias Walbert and Andrea Pace Department of Neurology and Neurosurgery, Henry Ford Health System, Detroit, Michigan, USA (T.W.); Regina Elena National Cancer Institute, Service of Neurology, Rome, Italy (A.P.) Corresponding Author: Tobias Walbert, MD, Henry Ford Health System, Department of Neurology and Neurosurgery, 2799 W. Grand Blvd. Detroit, MI 48202 USA (
[email protected]). See the article by Diamond et al., on pages 78–86.
Multidisciplinary palliative care (PC) and hospice services are ideally equipped to provide symptom management and psychosocial and supportive care to brain tumor (BT) patients and their family members. Recent evidence in systemic cancer patients shows that early involvement of PC services decreases signs of depression and anxiety and at the same time improves patients′ quality of life.1 Hospice focuses on end-of-life care, and its early initiation can improve quality of life and symptom control and at the same time result in less aggressive cancer care.2 – 4 The opposite is true for aggressive oncological care in the final weeks of life of cancer patients. A newly published study about the use of chemotherapy in patients with advanced cancer showed no improvement and even a detrimental impact on patients’ quality of life when chemotherapy was used in the last week of life.5 Despite mounting evidence of the positive aspects of PC and hospice, the neuro-oncology community continues to have difficulty embracing a model of care based on triggered, targeted interventions that result in high-quality, cost-effective, patient-centered, and coordinated care. So why do we have such a hard time doing what appears to be the right thing for our patients? An expanding number of studies, including the one conducted by the authors of the article “Rates and Risks for Late Referral to Hospice in Patients with Primary Malignant Brain Tumors” in this issue of Neuro-Oncology (Diamond et al), have shown that the end-of-life phase of BT patients has a quite different disease and symptom trajectory compared with the general cancer population.6,7 In addition, disease history and needs of care in the last stage of life in BT patients have few similarities with other progressive neurological diseases. A recent survey revealed that 29% –46% of neuro-oncology care providers did not feel comfortable dealing with end-of-life care in BT patients,8 and these providers just might not be equipped to provide high-quality end-of-life care. The survey showed that lack of education in the field of PC and hospice plays a role. However, another reason might be that despite the recent gain in knowledge, we still do not know enough
about the disease trajectory and the underlying disease mechanisms that define quality of life as well as the right timing of end-of-life interventions. Over the last 5 years, there has been an increasing interest in end-of-life research in neuro-oncology. Several systematic reviews6,7 as well as retrospective studies have laid the foundation to understand which symptoms define this phase of life in our patients9 – 11 and how it affects caregivers.12 – 14 However, the bigger picture and what we can do to improve patients′ chances to experience a “dignified death” and one in accordance with their wishes remains unclear.15,16 In this issue of Neuro-Oncology, Diamond et al add an important piece to the puzzle of how to provide meaningful end-of-life care for patients with primary high-grade glioma by further defining the appropriate timing of hospice referrals. The authors utilized a retrospective cohort review to assess end-of-life symptoms and hospice referral patterns. They compared symptom and demographic features of patients referred in the last week of their lives (“late referrals”) with those of patients who were referred earlier. Similar to our experience, hospice enrollment was late in the disease trajectory, and 22.5% of study participants entered hospice within 7 days of death, 35% within 14 days, and 59.4% within 30 days of death. Not surprisingly, and as shown previously,16,17 symptoms increased dramatically during the last 7 days of life and neurological function declined rapidly at the same time. More interestingly, the authors also found that certain demographic features, including male gender, Medicaid insurance status, and the absence of a health care proxy, were also associated with late referral. This absence of health care proxies is especially worrisome, as decision-making capacity is a major clinical issue for BT patients and declines rapidly during the last weeks of life. To discuss end-of-life issues with BT patients becomes progressively more difficult during the course of the disease because of cognitive disturbances, confusion, and decreasing consciousness. Only a small proportion of BT patients have established advance directives about end-of-life treatment, and progressive neurological deficits and the lack
Received 13 August 2015; accepted 17 August 2015 # The Author(s) 2015. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail:
[email protected].
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Editorial
of medical capacity often mean that decisions must be made on their behalf and without clear knowledge of their wishes.10 Without the early integration of advance care planning and the assignment of a medical power of attorney, BT patients might miss their chance to clarify their goals of care for the end-of-life phase while hoping for a cure. While there has been a major push to integrate PC into the treatment paradigm of cancer (statement by the American Society of Clinical Oncology), not much is known about the timing and the role of PC in BT patients. While we′ re gaining a better understanding about the end-of-life symptoms of BT patients, much more remains to be learned. The end-of-life stage of BT patients may be considered a unique experience from both clinical and ethical points of view. The identification of factors that delay the early provision of PC, particularly in patients with high symptom burden and/or significant psychosocial dysfunction, is therefore of ultimate importance. The aim of PC at the end of life in BT patients includes adequate symptom control, relief of suffering, avoiding inappropriate prolongation of dying, supporting families and caregivers, and attending to our patients’ emotional well-being, including spiritual concerns. Future research should focus on defining the best timing and the appropriate intervention to plan for the end of life as well as how to improve symptom control to ensure a better quality of life in patients′ last days and weeks. Improved education of neuro-oncology care providers will also be important.
Conflict of interest statement. Dr Walbert serves on the Advisory Board for Novocure.
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