Introduction
Cancer’s reach extends to the central nervous system, manifesting as primary brain tumors (PBTs) or secondary brain tumors (SBTs), also known as brain metastases. Despite the unique challenges these conditions pose, the specific palliative care requirements for these patients have historically been under-addressed. Recognizing the nuances in their care is crucial for healthcare professionals dedicated to enhancing the quality of life for individuals facing these complex diagnoses. Understanding the Palliative Care Differential Diagnosis in brain tumors is not just about managing physical symptoms; it’s about addressing a spectrum of needs that differ significantly from those of patients with other palliative conditions.
This article delves into the distinctive palliative care needs of patients with brain tumors, drawing on a comprehensive study that compared patients with PBTs, SBTs, and other palliative care patients. By examining symptom profiles, functional status, and the rationales for seeking palliative care, we aim to highlight the critical elements of a palliative care differential diagnosis in this population. This understanding is essential for tailoring effective, interdisciplinary care strategies that address the holistic needs of patients and their families.
Understanding Primary and Secondary Brain Tumors in Palliative Care
Primary brain tumors originate within the brain, while secondary brain tumors, or brain metastases, result from cancer spreading from other parts of the body to the brain. Secondary brain tumors are considerably more common, affecting 20–40% of individuals with systemic malignancies during the course of their illness [1]. Both primary and secondary brain tumors carry significant implications for prognosis and quality of life. Brain metastases often indicate a more advanced stage of cancer, with a mean survival typically ranging from 1 to 6 months, influenced by factors such as the primary cancer type and treatment approaches [2]. Primary brain tumors, while less prevalent overall, include highly malignant gliomas, which also have a sobering median survival of 5–10 months [4, 5].
The impact of both PBTs and SBTs extends beyond physical health. Neurological and cognitive functions are frequently compromised [6], leading to a unique set of challenges in palliative care. Patients and their families grapple with existential distress, anxieties surrounding loss of control, cognitive decline, personality changes, and overall consciousness. Therefore, a robust palliative care differential diagnosis must encompass not only physical symptoms but also these profound psychological and social dimensions.
Palliative care, by its definition, focuses on alleviating suffering and improving quality of life for individuals facing progressive, life-limiting illnesses, irrespective of the underlying diagnosis [7]. Given the often-limited options for disease-modifying treatment, particularly for aggressive brain tumors, palliative management becomes paramount. To effectively meet the distinct needs of this patient group, a detailed understanding of their specific challenges within the broader palliative care landscape is essential. This article will shed light on how the palliative care differential diagnosis for brain tumor patients necessitates a nuanced and specialized approach.
Differential Diagnosis in Palliative Care Needs: Key Findings from a German Study
To better understand the specific palliative care needs of patients with brain tumors, a study was conducted analyzing data collected over several years in various palliative care settings in Germany. This research provides valuable insights into the palliative care differential diagnosis by comparing patients with primary brain tumors (PBT), secondary brain tumors (SBT), and other palliative care patients (OP).
Functional Status and Nursing Needs
The study revealed significant differences in functional status and nursing needs among the patient groups. Patients with PBTs and SBTs more frequently presented with a poor functional status, as indicated by an ECOG score of 3–4, compared to other palliative care patients (OP). Notably, a high need for nursing support, classified as level III, was more commonly documented for PBT patients than for both SBT and OP groups. This suggests that patients with primary brain tumors often experience a greater degree of functional impairment and require more intensive nursing care in the palliative phase of their illness.
These findings underscore a crucial aspect of the palliative care differential diagnosis: the pronounced functional decline often associated with brain tumors, particularly primary tumors. This necessitates proactive planning for comprehensive nursing support and assistance with activities of daily living.
Symptom Burden: Physical vs. Psycho-Social
Analysis of symptom prevalence and intensity revealed a striking contrast in the nature of suffering experienced by brain tumor patients compared to others in palliative care. While physical symptoms such as pain, nausea, vomiting, and constipation were documented less frequently and with lower intensity in PBT and SBT patients compared to OP patients, the burden of nursing, psychological, and social problems was significantly higher.
Specifically, patients with PBTs and SBTs exhibited a greater need for support with activities of daily living and experienced higher rates of disorientation and confusion. Furthermore, the strain on families caring for these patients was significantly more pronounced. Although emotional strain and anxiety were noted across all groups, disorientation and confusion stood out as particularly prevalent in patients with brain tumors, highlighting a key element in the palliative care differential diagnosis.
This data emphasizes that the palliative care differential diagnosis for brain tumor patients must prioritize the assessment and management of neurocognitive symptoms and the provision of robust support for family caregivers. While traditional palliative concerns like pain management remain relevant, the unique challenges of confusion, disorientation, and family overburdening emerge as central to effective care.
Reasons for Admission to Palliative Care: Neurological Focus
The study also explored the reasons for admission to palliative care services, providing further insight into the perceived needs of brain tumor patients and their caregivers. While symptom control was a primary reason for admission across all groups, it was notably less frequent for PBT and SBT patients compared to OP patients. Conversely, social issues, functional deficits, and cognitive impairment were significantly more often cited as reasons for admission for patients with brain tumors.
Intriguingly, despite the documentation of neurological deficits such as paresis, seizures, and brain edema as secondary ICD-diagnoses, these were rarely identified as the primary reason for admission. This suggests a potential gap in the recognition of neurological problems as a central focus of palliative care, even when they are clinically present. The palliative care differential diagnosis should, therefore, explicitly consider neurological symptoms and functional impairments as key drivers for palliative care referral and intervention in brain tumor patients.
Implications for Palliative Care Practice: Tailoring Approaches
The findings of this study carry significant implications for how palliative care services should be designed and delivered to patients with brain tumors. The palliative care differential diagnosis reveals a distinct profile of needs that necessitates a tailored approach, moving beyond a one-size-fits-all model of palliative care.
Firstly, the higher prevalence of cognitive and functional impairments underscores the importance of early and proactive assessment of neurological status. Tools and strategies specifically designed to detect and monitor cognitive changes in the palliative setting are crucial.
Secondly, interdisciplinary teams are paramount. Given the complex interplay of physical, psychological, and social challenges, a team comprising physicians, nurses, social workers, psychologists, and potentially neuropsychologists or counselors with expertise in neuro-oncology, is essential. This team should be equipped to address not only symptom management but also cognitive and emotional support for patients and their families.
Thirdly, the significant burden on family caregivers highlighted in this study calls for early and integrated social and psychological support for families. Interventions such as respite care, counseling services, and support groups tailored to the unique challenges of caring for a loved one with a brain tumor are vital components of comprehensive palliative care. Addressing family overburdening is not merely a supportive measure; it is an integral part of effective symptom management and overall patient well-being.
Finally, the study’s observation that neurological deficits are under-recognized as primary drivers for palliative care suggests a need for increased awareness and education among healthcare professionals. Emphasizing the neurological dimensions of palliative care in brain tumors and promoting early referral to specialized palliative services are crucial steps in improving care delivery.
Limitations and Future Directions
While this study provides valuable insights into the palliative care differential diagnosis in brain tumors, it is important to acknowledge certain limitations. The documentation tool used was designed for a general palliative care population, which may have underrepresented issues specific to brain tumor patients. Additionally, symptom assessments were conducted by staff, not directly by patients, which might introduce bias, particularly in cognitively impaired individuals.
Future research should explore the use of patient-reported outcome measures and assessment tools specifically tailored for neuro-oncology palliative care. Further investigation into the effectiveness of targeted interventions, such as cognitive rehabilitation, psychological therapies, and family support programs, is also warranted. Longitudinal studies tracking the palliative care trajectory of brain tumor patients could further refine our understanding of their evolving needs and inform best practices in care delivery.
Conclusion
This study robustly demonstrates that palliative care needs in patients with primary and secondary brain tumors are significantly distinct from those of other palliative care populations. The palliative care differential diagnosis emphasizes a greater burden of cognitive impairment, functional decline, and family strain, alongside a comparatively lower prevalence of certain physical symptoms. These findings underscore the critical need for specialized, interdisciplinary, and multi-professional palliative care services tailored to the unique challenges of brain malignancies. By prioritizing early integration of social and psychological support for both patients and their families, and by recognizing the central role of neurological symptom management, we can strive to provide the most effective and compassionate palliative care for individuals facing brain tumors.
Acknowledgements
We would like to thank the physicians, nurses, social workers, psychologists and other staff members for the time and enthusiasm dedicated to data documentation. Additional thanks are directed to the principal investigators of the participating centres who participated in the development of HOPE, and to the German Association of Palliative Medicine, German Hospice and Palliative Association and the German Cancer Association for their support of HOPE.
Footnotes
1Due to the fact that data analysis, feedback to the institutions and discussion about modification of the instrument lasted 15 months on average, no census was performed in 2003. Since 2005, the census has been repeated annually, as the infrastructure is now optimised and the instrument can be used as a standard documentation tool.
2According to the German long-term care legislation patients have to apply for a nursing level in order to receive financial aids. The grouping to a certain level implies a dedicated need for nursing support (higher level = higher need for nursing support (Table 3)) and aligns for a certain financial grant.
3In Germany, palliative care units are medical units, integrated into hospitals and have an average stay of 9 days. Hospices focus on nursing needs, are freestanding, generally patients remain there until they die. Funding for services also differs.
Lukas Radbruch and Raymond Voltz contributed equally to the manuscript.
References
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[2] Hess KR (2003) Extracranial metastases in gliomas. Arch Neurol 60:1106–1107
[3] Kleihues P, Burger PC, Aldape KD, Brat DJ, Biernat W, Casadei GP, Louis DN, von Deimling A, Ellison DW, Fujii Y, Goodman ML, могло Н, стало Ì, Ohgaki H, Jaunmuktane Z, Raquin MA, Reifenberger G, Rosenblum MK, Ross GW, Scheithauer BW, Shibata T, Sorensen PH, Weller M, Wesseling P (2007) Central nervous system tumours who classification of tumours. IARC Press, Lyon
[4] Salcman M (1990) Glioblastoma multiforme. Surg Neurol 33:414–419
[5] Shapiro WR (1986) Therapy of adult malignant brain tumors. What next? Ann Neurol 20:425–427
[6] Posner JB (1995) Neurologic complications of cancer. FA Davis, Philadelphia
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[8] Kreuzer M, Huss R, Stark R, Landenberger M, Olschewski M, Blettner M (2005) Psychological distress in patients with brain tumors: results of a population-based cancer registry study in Saarland, Germany. Neuro-Oncology 7:281–289
[9] Ligibel JA, Sepucha K, Lee SJ, Walter LC, Elmore LK, Lagerstedt-Robinson K, Weeks JC (2005) Patient and caregiver preferences for decision making in the palliative care setting. J Palliat Med 8:308–317
[10] Voltz R, Blum D, Buchholz A, Christ C, Nauck F, Schneider G, Klaschik E (2000) Integrating palliative care into routine cancer care: a pilot study in a comprehensive cancer centre. Support Care Cancer 8:458–463
[11] Voltz R, Borasio GD, Klaschik E (1998) Symptom prevalence and symptom intensity in palliative care patients: a cross-sectional study using the German version of the Edmonton Symptom Assessment System. J Pain Symptom Manage 16:248–257
[12] Bükki J, Momm F, Ostgathe C, Radbruch L (2007) Palliative care in Germany – data from the nationwide hospice and palliative care evaluation (HOPE). Palliat Med 21:71–73
[13] Radbruch L, Bükki J, Jaspers B, Nauck F,াত্ত F, কী C, Ostgathe C, কী S, Velten J, Voltz R (2006) Versorgung von Palliativpatienten in Deutschland – Ergebnisse der Nationalen Erhebung 2004. Dtsch Med Wochenschr 131:13–18
[14] Radbruch L, Payne S (2006) White paper on palliative care in Europe. European Association for Palliative Care, Milano
[15] Oken MM, Creech RH, Tormey DC, Horton J, Johnson GJ, Johnson CC, Moertel CG, Philipwski P, Classen J, Stolbach L, Kirkwood JM, Miller TP (1982) Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 5:649–655
[16] Bundesministerium für Gesundheit (1994) Pflegeversicherungsgesetz vom 26. Mai 1994 (BGBI. I S. 1014). Bundesanzeiger Verlag, Köln
[17] Jaspers B, Bükki J, Gököz M, Ostgathe C, Radbruch L (2006) Hospiz- und Palliativversorgung in Deutschland – Ergebnisse der Nationalen Erhebung 2005. Dtsch Med Wochenschr 131:1099–1103
[18] Le Rhun E, Taillibert S, Chamberlain MC (2019) Carcinomatous meningitis in adults—a systematic review. Neuro-Oncology 21:i1–i17
[19] Nayak L, Lee EQ, Wen PY (2012) Epidemiology of brain metastases. Curr Oncol Rep 14:48–55
[20] Sepulveda C, Marlin A, Yoshida T, Ullrich A (2002) Palliative care: the global context. In: Doyle D, Hanks G, MacDonald N (eds) Oxford textbook of palliative medicine, 2nd edn. Oxford University Press, Oxford, pp 19–34
[21] Brown PD, Maurer MJ, Wanga Q, Erlichman C, Sloan JA, Meyers CA, O’Fallon JR (2000) Cognitive function, health-related quality of life, and survival in patients with recurrent malignant glioma. J Clin Oncol 18:560–569
[22] Ownsworth T, Williamson A, Young A, Gotts P, Mulder J (2006) Caregiver distress and altered family functioning following diagnosis of high-grade glioma. J Neuro-Oncol 78:289–297
[23] Herndon JE 2nd, Coan AD, Fay JW, Herndon CM, Lanier D, LoConte N, Reardon DA, Desjardins A, Vredenburgh JJ, Sampson JH, Peters KB, Friedman AH, Friedman HS (2007) Functional status, quality of life, and neurocognitive outcomes in primary brain tumor patients treated with radiation therapy and temozolomide or radiation therapy and carmustine: a prospective randomized trial. J Clin Oncol 25:2211–2218
[24] Weitzner MA, McMillan SC, Jacobsen PB (1999) Family caregiver quality of life: the role of the cancer experience. Support Care Cancer 7:11–22
[CR1] Walker AE, Robins M, Weinfeld FD (1985) Epidemiology of brain tumors: the national survey of intracranial neoplasms. Neurology 35:219–226
[CR2] Hess KR (2003) Extracranial metastases in gliomas. Arch Neurol 60:1106–1107
[CR3] Kleihues P, Burger PC, Aldape KD, Brat DJ, Biernat W, Casadei GP, Louis DN, von Deimling A, Ellison DW, Fujii Y, Goodman ML, могло Н, стало Ì, Ohgaki H, Jaunmuktane Z, Raquin MA, Reifenberger G, Rosenblum MK, Ross GW, Scheithauer BW, Shibata T, Sorensen PH, Weller M, Wesseling P (2007) Central nervous system tumours who classification of tumours. IARC Press, Lyon
[CR4] Salcman M (1990) Glioblastoma multiforme. Surg Neurol 33:414–419
[CR5] Shapiro WR (1986) Therapy of adult malignant brain tumors. What next? Ann Neurol 20:425–427
[CR6] Posner JB (1995) Neurologic complications of cancer. FA Davis, Philadelphia
[CR7] World Health Organization (1990) Cancer pain relief and palliative care. WHO, Geneva
[CR8] Kreuzer M, Huss R, Stark R, Landenberger M, Olschewski M, Blettner M (2005) Psychological distress in patients with brain tumors: results of a population-based cancer registry study in Saarland, Germany. Neuro-Oncology 7:281–289
[CR9] Ligibel JA, Sepucha K, Lee SJ, Walter LC, Elmore LK, Lagerstedt-Robinson K, Weeks JC (2005) Patient and caregiver preferences for decision making in the palliative care setting. J Palliat Med 8:308–317
[CR10] Voltz R, Blum D, Buchholz A, Christ C, Nauck F, Schneider G, Klaschik E (2000) Integrating palliative care into routine cancer care: a pilot study in a comprehensive cancer centre. Support Care Cancer 8:458–463
[CR11] Voltz R, Borasio GD, Klaschik E (1998) Symptom prevalence and symptom intensity in palliative care patients: a cross-sectional study using the German version of the Edmonton Symptom Assessment System. J Pain Symptom Manage 16:248–257
[CR12] Bükki J, Momm F, Ostgathe C, Radbruch L (2007) Palliative care in Germany – data from the nationwide hospice and palliative care evaluation (HOPE). Palliat Med 21:71–73
[CR13] Radbruch L, Bükki J, Jaspers B, Nauck F,াত্ত F, কী C, Ostgathe C, কী S, Velten J, Voltz R (2006) Versorgung von Palliativpatienten in Deutschland – Ergebnisse der Nationalen Erhebung 2004. Dtsch Med Wochenschr 131:13–18
[CR14] Radbruch L, Payne S (2006) White paper on palliative care in Europe. European Association for Palliative Care, Milano
[CR15] Oken MM, Creech RH, Tormey DC, Horton J, Johnson GJ, Johnson CC, Moertel CG, Philipwski P, Classen J, Stolbach L, Kirkwood JM, Miller TP (1982) Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 5:649–655
[CR16] Bundesministerium für Gesundheit (1994) Pflegeversicherungsgesetz vom 26. Mai 1994 (BGBI. I S. 1014). Bundesanzeiger Verlag, Köln
[CR17] Jaspers B, Bükki J, Gököz M, Ostgathe C, Radbruch L (2006) Hospiz- und Palliativversorgung in Deutschland – Ergebnisse der Nationalen Erhebung 2005. Dtsch Med Wochenschr 131:1099–1103
[CR18] Le Rhun E, Taillibert S, Chamberlain MC (2019) Carcinomatous meningitis in adults—a systematic review. Neuro-Oncology 21:i1–i17
[CR19] Nayak L, Lee EQ, Wen PY (2012) Epidemiology of brain metastases. Curr Oncol Rep 14:48–55
[CR20] Sepulveda C, Marlin A, Yoshida T, Ullrich A (2002) Palliative care: the global context. In: Doyle D, Hanks G, MacDonald N (eds) Oxford textbook of palliative medicine, 2nd edn. Oxford University Press, Oxford, pp 19–34
[CR21] Brown PD, Maurer MJ, Wanga Q, Erlichman C, Sloan JA, Meyers CA, O’Fallon JR (2000) Cognitive function, health-related quality of life, and survival in patients with recurrent malignant glioma. J Clin Oncol 18:560–569
[CR22] Ownsworth T, Williamson A, Young A, Gotts P, Mulder J (2006) Caregiver distress and altered family functioning following diagnosis of high-grade glioma. J Neuro-Oncol 78:289–297
[CR23] Herndon JE 2nd, Coan AD, Fay JW, Herndon CM, Lanier D, LoConte N, Reardon DA, Desjardins A, Vredenburgh JJ, Sampson JH, Peters KB, Friedman AH, Friedman HS (2007) Functional status, quality of life, and neurocognitive outcomes in primary brain tumor patients treated with radiation therapy and temozolomide or radiation therapy and carmustine: a prospective randomized trial. J Clin Oncol 25:2211–2218
[CR24] Weitzner MA, McMillan SC, Jacobsen PB (1999) Family caregiver quality of life: the role of the cancer experience. Support Care Cancer 7:11–22
