Glioblastoma (GBM) is an aggressive, terminal brain cancer known for its rapid progression and resistance to treatment. It is the most common malignant primary brain tumor in adults, typically diagnosed around age 65. Despite multimodal therapies like surgery and chemotherapy, GBM remains incurable, with an average life expectancy often cited as 10 to 15 months following diagnosis. This article provides an overview of what to expect as the disease progresses to its final stages, shifting the focus from curative measures to comfort and quality of life.
Expected Physical and Neurological Changes
The physical and neurological decline in the end stage of glioblastoma reflects the tumor’s relentless growth and increasing pressure on the brain’s functional areas. A defining feature is profound weakness and increasing fatigue, which dramatically impacts the ability to perform routine daily activities. Patients often transition into spending most of their time asleep, becoming progressively harder to rouse.
As the tumor expands, it causes specific neurological deficits, depending on the area of the brain affected. A person may experience hemiparesis (weakness or partial paralysis on one side of the body), making mobility challenging and eventually leading to a bed-bound state. Difficulty swallowing, known as dysphagia, is common, increasing the risk of aspiration and causing issues with nutrition and hydration.
Cognitive decline and changes in consciousness become more pronounced. Confusion, memory loss, and disorientation are frequent, sometimes accompanied by changes in personality or behavior. Communication becomes increasingly difficult, with patients experiencing aphasia or slurred speech.
Seizure activity often becomes more frequent or severe in the final stage, requiring careful management for safety and comfort. Headaches, resulting from increased pressure inside the skull, can also persist or worsen. Changes in breathing patterns, such as Cheyne-Stokes respiration (cycles of deep and shallow breathing), may occur in the last days, signaling the final physical changes as the brain’s control centers are affected.
Focusing on Comfort and Symptom Management
Once curative treatments are no longer effective, the care philosophy shifts entirely to symptom control and maximizing comfort, which is the foundation of palliative care. Managing pain is a primary concern, often involving the strategic use of opioid and non-opioid medications to address headaches and other sources of discomfort. The medical team carefully balances pain relief with the potential for increased drowsiness.
Neurological symptoms are managed with targeted interventions to maintain quality of life. Anti-epileptic medications are used to control the frequency and severity of seizures. Corticosteroids, such as dexamethasone, are often used to reduce brain swelling (vasogenic edema), which can temporarily alleviate symptoms like headaches, nausea, and focal deficits.
Emotional and psychological distress, including agitation, anxiety, and delirium, also requires specific management. Psychotropic medications may be introduced to address these behavioral changes, which are often a direct result of the tumor’s progression. Managing nausea and vomiting, caused by increased intracranial pressure, is accomplished using antiemetic medications to promote comfort.
Care also focuses on managing respiratory distress. Difficult or labored breathing (dyspnea) is addressed through proper positioning, such as elevating the head, and sometimes with medications to ease anxiety. As swallowing becomes impaired, food and fluid intake naturally decrease, and comfort care focuses on mouth care and managing secretions, rather than aggressive nutritional support.
Understanding Hospice Care and Practical Planning
Hospice care is a specialized form of palliative care provided to individuals who are approaching the end of life, typically when a doctor believes the person has six months or less to live. Unlike traditional medical treatment, which seeks to cure the disease, hospice care focuses exclusively on comfort, dignity, and quality of life. Patients are often admitted to hospice when they and their families decide to discontinue aggressive, life-prolonging treatments like chemotherapy or radiation.
The care is delivered by an interdisciplinary hospice team, which provides a comprehensive support system for both the patient and the family. This team typically includes nurses who manage symptoms, social workers who assist with practical and emotional needs, home health aides for personal care, and spiritual counselors. Hospice services can be provided in various settings, including the patient’s home, an assisted living facility, or a dedicated inpatient hospice unit.
Practical planning is an important component of end-of-life care for glioblastoma patients due to the high risk of cognitive changes. Early conversations about advance directives are strongly encouraged, ideally starting soon after diagnosis. These directives include appointing a Durable Power of Attorney for healthcare to make decisions if the patient loses capacity, and clearly stating preferences regarding life-sustaining interventions, such as Do Not Resuscitate (DNR) or Do Not Intubate (DNI) orders.
The hospice team also helps with the logistical and emotional aspects of this period, from financial and funeral planning to providing emotional support for caregivers. Given the predictable decline and high symptom burden of glioblastoma, a significant proportion of patients choose to utilize hospice services. Having these plans in place helps ensure the patient’s wishes are respected and reduces the burden of difficult decisions on loved ones during a time of grief.