Commonly Asked Patient and Caregiver Questions About End of Life and Glioblastoma
Written by: Aaron Cohen-Gadol, MD
Last Updated: September 25, 2023
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It is difficult for anyone to imagine themselves in the shoes of someone with a terminal diagnosis. But it can be even harder for people who have been diagnosed with brain cancer. Glioblastoma is one of the most aggressive types of brain tumors. Patients are often given very poor prognoses.
Patients will likely experience many different symptoms and emotions throughout the process, but there are ways to make the process much less painful. This article will explore commonly asked questions by patients and caregivers about what to expect in the final stages of glioblastoma and similar terminal conditions.
What Signs and Symptoms Suggest the End of Life Is Near in Patients With Glioblastoma?
In most cases, the process leading to death is not sudden for patients with glioblastoma. Growth of the tumor and swelling can disturb areas of the brain, manifesting as several clinical symptoms such as weakness, a decrease in consciousness, difficulty swallowing, seizures, and headache. Not all patients experience the same signs and symptoms; however, there are some common indications that end of life may be near:
Persistent changes in vital signs. Changes in blood pressure, heartbeat, and breathing may or may not be noticeable to family and caregivers. These changes may occur over a period of several days to even several weeks.
Changes in personality or behavior. The patient may become less social, more withdrawn, or more irritable. Patients may become confused and disoriented. They may even start using language that is not characteristic of them or expressing thoughts that are also strikingly out-of-character.
A decrease in activity level. Fatigue is often a major issue for those who are nearing the end of their lives. This is due to a combination of factors, including the cancer itself, the medications that are often prescribed to treat various symptoms associated with the dying process, and the psychological stress of coping with the matter at hand.
A decline in the ability to respond to one’s environment. Patients may seem disassociated or distracted. Over time, they may lose their ability to speak and move on their own, requiring constant supervision and caregiving.
What Can Be Expected in the Final Days and Hours of Life?
In the final stages of the disease, the patient's body will begin to shut down. Patients may lose the ability to speak, eat, and move. They may also suffer from seizures, hallucinations, or changes in breathing pattern. The skin may take on a bluish tint, and the patient may become increasingly lethargic. While these signs and symptoms do not provide a precise timeline, recognizing one or more of them may signal to families and caregivers that the end is near.
What Can Be Done to Make Death From Glioblastoma Less Painful for Both Patient and Caregiver Alike?
Death is often a difficult process for patients with glioblastoma and their caregivers. However, there are ways to make death less painful for both parties. One of the most important things caregivers can do is remain understanding and supportive. Patients with glioblastoma are often struggling with a great deal of physical and emotional burdens. It is important to listen to them, even if they are unable to communicate verbally.
Caregivers should be prepared for death to occur at any time. It is important to have a plan in place for when death does occur, including who will be present and what will be done afterwards. During this process, the patient’s loved ones can help them feel as comfortable as possible. It is important that family and friends do not feel afraid of death, and instead, be prepared for it. They should also try to spend as much time with the patient as they can in their final days.
Death from glioblastoma can often come suddenly and unexpectedly. In some cases, death may be preceded by a few hours or days in which the patient has noticeable signs and symptoms. Though death itself comes quickly, it’s important to understand that death from glioblastoma often results from a gradual process of physical decline. Empathy and compassion during this time can help make death less painful for patients and their loved ones alike.
No one wants to think about death, but for patients who have been diagnosed with glioblastoma, it is a reality that they must face. This type of cancer is very aggressive and often leads to death within a year or less from the time of diagnosis. While there is no easy way to deal with death, there are things that can be done to make the process easier for both patient and caregiver. Faith in G-d and family can be crucial for surviving such difficult times and for all involved.
