Nurses need to think holistically about patients with neoplastic meningitis. These patients may have endured multiple treatment regimens and often their resources—physical, emotional, and spiritual, as well as financial—are depleted. Ensuring that patients can meet the financial and transportation requirements of treatment—either twice a week or twice a month—can avoid delays and interruptions. Opening a dialogue that addresses realistic expectations of the treatment plan is critical. Patients should be encouraged to identify their goals and express their feelings about palliative-directed care (versus curative care). Signs and symptoms, especially those indicating disease progression or adverse reactions, should be discussed with patients and caregivers and reinforced at each encounter. Follow-up phone calls are also helpful.
Aggressive symptom management for all patients, even those who do not elect treatment, includes opiates for pain, including headache; anticonvulsants or tricyclic antidepressants for neuropathic pain; and corticosteroids for intracranial vasogenic edema, raised intracranial pressure, and nausea and vomiting.20 The use of stimulant drugs, such as modafinil and methylphenidate, is controversial; however, some literature suggests that these drugs help patients with advanced cancer who have pervasive generalized fatigue. Nurses should encourage patients and caregivers to call as soon as a symptom develops or worsens to prevent the occurrence of more severe or persistent symptoms. Reporting symptoms may also provide patients with a feeling of empowerment and participation and can support or establish a rapport with and foster confidence in the health care team.
The appropriateness of an individual patient for treatment should be determined prior to making a decision regarding available treatment strategies and regimens. Again, assessing the patient’s goals and expectations of treatment and its outcomes is crucial. Patients with very low Karnofsky performance status scores, significant comorbidities, poor responses or an inability to tolerate previous treatment regimens, or extensive systemic disease that will not be concurrently treated may not be candidates for palliative treatment. Patients for whom treatment is an option can be further stratified according to risk status versus potential benefit of treatment.10 Patients with a good ratio of risk may benefit more from treatment; however, patients with poor risk status or who have particularly chemosensitive tumors (eg, small cell lung cancer, lymphoma) may still derive significant benefit from palliative treatment.21
NIHILISM AND PALLIATIVE CARE
Many clinicians may have observed a sense of hopelessness in patients with neoplastic meningitis, many of whom have end-stage disease and have undergone multiple treatments involving several body systems over an extended period of time. Patients adjust to declining functional status over time, which enhances their ability to maintain a sense of purpose and pursue treatment with undiminished hope. Clinicians, however, may not share this readiness to undertake treatment, especially if they have experience treating patients with this disease. These clinicians understand that treatment is noncurative, has physical and financial consequences, and success is subjective and difficult to predict at the outset. However, some patients do grasp that delaying neurologic decline preserves quality of life.
Unfortunately, the oncology care provider has many opportunities to inform the patient of disease progression or poor treatment response, as well as the development of complications that can delay or disrupt treatment. The provider also experiences the anguish of coping with the inevitability of a shortened life span. A nurse who knows that cancer may ultimately prevail may have nihilistic thoughts (eg, “Why should I advocate treatment that has such modest survival benefit?”). Despite the conflicting emotions and viewpoints, a patient with neoplastic meningitis needs and can benefit from palliative care. Oncology nurses should discuss treatment options with every patient, regardless of his or her prognosis.
Palliation in this disease state refers to maintaining functional status, relieving distressing symptoms, and slowing disease progression.10 Palliation is the desired outcome; therefore, defining success is an important component of planning treatment. Clinicians should discuss what quality of life means to the patient, not as a conversation but as an ongoing dialogue, in order to assist the patient in developing realistic treatment expectations. Although cytologic clearing may be the standard measure of a positive response to therapy, the nurse should consider the patient’s subjective reports of symptoms and functionality as well as input from caregivers when assessing efficacy and planning the treatment course. This is because indications of positive response to therapy also include slowing or halting disease progression, mitigating existing symptoms, and reducing the need for corticosteroids.10 Performance scores have a role in assessing quality of life, but only the patient can say whether palliation is achieved.
Although listening to the patient is a major component of oncology care, talking about aggressive symptom management can be relegated to an as-needed conversation because the focus is on curation. In cases of neoplastic meningitis, which is an advanced and progressive disease, the patient needs to know that the clinician’s commitment to palliation is equal to that of cure, and that distressing symptoms will be promptly addressed. Conversely, patients should be counseled that they have a responsibility to report symptoms accurately.
Common supportive measures include administering antidepressants and anxiolytics, stimulants to counter pervasive fatigue, and prophlaxis for deep venous thrombosis; advocating for, communicating with, and coordinating home based services and durable medical equipment; providing lists of local, national, and Web-based advocacy and education organizations; providing “cheat sheets” with emergency instructions and contact information; and educating patients and caregivers about infection, infection control, skin care, and nutrition. Establishing a rapport with the patient’s caregivers is especially important in light of the high incidence of cognitive and memory impairment. Clinical team strategies for care of the patient with neoplastic meningitis are preventive and reactive. Treatment preparation includes basic education about the treatment itself, such as administration methods, side effects, adverse effects, and pretreatment with corticosteroids.
Neoplastic meningitis is a devastating, late-stage disease entity that may develop in a patient with a hematologic, primary CNS, or solid tumor malignancy. The disease is associated with high morbidity and mortality and has a negative impact on the patient’s functional status and quality of life. A high index of suspicion for the presence of malignant cells in the neuroaxis can result in an earlier diagnosis, which correlates with increased treatment options, delayed progression of neurologic sequelae, and improved quality of life. Quality of life matters to the patient regardless of the disease state, and even in the absence of curative treatment. Therefore, providing palliative therapies that preserve neurologic function and maintain quality of life is an appropriate response to this challenging diagnosis.
Cytarabine (Cytosar-U, generics)
Cytarabine liposome (Depocyt)
Methotrexate (Amethopterin, MTX, generics)
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Alixis Van Horn is a neuro-oncology nurse consultant in Princeton, Massachusetts. She is a member of the speaker bureau for Sigma-Tau Pharmaceuticals, Inc, which manufactures cytarabine liposome (DepoCyt).