What brain tumor patients and their families have taught me.
The purpose of this article is to identify the experience of the patient with a World Health Organization grade III/IV and IV/IV brain tumor, and that of their family, to best understand how to treat them. It is [the cumulative input of hundreds of patients and family members seen over a 20-year career of specialization at two teaching hospitals. No patient who has been diagnosed with a brain tumor, whether low grade, high grade, or benign, escapes totally unharmed because tumor existence, surgical removal, and/or toxicity of treatment combine to cause varying degrees of brain injury. Additional Considerations are the variables of tumor location within the brain, the age of the patient, their premorbid intellectual capacity, and their fear and anxiety, for full understanding of the impact and the complexity of the tumor and treatment on the individual patient. The mental health provider's mandate in caring for this population is threefold: first, provide hope in what patients feel is a hopeless situation; second, serve as witness to their experience and acknowledge and validate the changes and loses that occur; and third, create empowerment in what seems a helpless situation. For the purposes of this article, further reference to brain tumors will be World Health Organization grade III/IV and IV/IV.
Keywords: brain tumor, cognitive deficits, mental health, short-term memory loss
Foreword: Caring for patients with primary or metastatic brain tumors is a part of many neuroscience nurses' everyday practice. These patients and their families have complex, unique needs and are often "struggling" to cope with what is typically perceived as a terrible diagnosis with less than positive outcomes. We empathize with them, sympathize with them, listen to their concerns, and help them manage symptoms and treatment. We are with them during some of the hardest moments of their lives. We do, however, need to remember that other healthcare professionals provide essential care as well; these individuals often have very different experiences with "our" patients and perceive their concerns and needs differently. In this Reflections column, we are given a glimpse into one other caring world.
V. Susan Carroll, MS, RN-BC
Treating patients with brain tumors can be challenging for mental health providers. Many of the patients appear healthy and are responsive to questioning, whereas others may be described as having a tat affect, being difficult to engage, or lacking insight--presentations that can mimic a multitude of mental health problems. Also, brain tumor patients can be so proficient at rising to the occasion that even the most experienced mental health provider may not detect their deficiencies. Short-term memory deficits may not surface in a single meeting, and mental health providers may not realize that the patients have cognitive processing delays and that they may not have understood, nor remember, any of the conversation once they leave the office. The following information taught to me by patients and their families is presented to inform mental health providers of the implications for brain tumor patients and their families, to identify their reactions to each stage of treatment, to identify treatment subtleties and environmental recommendations for treatment areas, to explain the need and value of providing hope and infusing humor into treatment, and to examine ways to empower patients along the continuum of their disease.
Implications for Patients Diagnosed With Brain Tumors and for Their Families
1. Brain Injury
First, it is important to understand the potential implications for every patient diagnosed with a brain tumor and for their family. First and foremost, all brain tumors, malignant or benign, cause some brain injury, because the skull is not flexible and cannot accommodate a foreign body (the tumor) pressing on healthy brain cells. Thus, every patient experiences some deficit/s--cognitive, physical, and emotional--dependent on the location within the brain. Surgical removal causes further injury, as do the toxic effects of radiation and chemotherapy when utilized as treatments. Adjuvant therapies, steroids, and anticonvulsants can compound and exacerbate the problems.
Second, patients and families feel helpless. They are shocked and horrified by the diagnosis. Everyone, from the least to the most educated, recognizes that a brain tumor diagnosis is serious. One day, people's lives are status quo, and the next, their world is turned upside down, where nothing feels nor looks the same. The unanswerable questions, the unpredictability, and the fear of dying cause extreme levels of anxiety and, frequently, accompanying depression. Patients and their families experience uncomfortable and exhausting degrees of hyperarousal and hypervigilance, never knowing what to expect and never knowing what the next magnetic resonance imaging (MRI) will show.
Third, fatigue may be the most frequent complaint of patients with brain tumors. The fatigue is the result of the treatment toxicities, the adjuvant therapies, the comorbid psychological implications, and the disruption of Circadian rhythm, because of the consequent hyperarousal/ hypervigilance. Anticonvulsants, in particular, can be extremely sedative for patients. The physical, psychological, and sedative implications of treatments and adjuvant therapies, in addition to sleep disruption, create a continuing cycle, perpetuating the fatigue.
4. Short-Term Memory Deficits
Fourth, many, if not all, patients experience short-term memory deficits. This is similar to what this generation refers to as "senior moments" but far more serious. This issue has a significant impact on the patient's and the family's quality of life. The memory loss can be so severe that the behavior mimics that of Alzheimer disease patients. The patients may repeat questions over and over, have trouble solving problems and completing familiar tasks, become easily confused, and exhibit lack of judgment. Even the most loving and patient family becomes tired of repetitively answering the same question, of having to constantly redirect and cue the patient, and of the need for 24/7 observation. At times, anger toward the patient surfaces, reinforcing the patient's poor self-esteem and confusion and serving to make the family member feel guilty.
Fifth, patients and families feel isolated. Others, all too frequently, do not understand how the consequences of this diagnosis affect the patient and family. This is an invisible disease, leaving many patients looking as they did before diagnosis. Therefore, if the patient looks the same, they are the same, and they have overcome the disease in the minds of observers. This can be extremely dismissive for both the patients and their family members as, when informed that someone has a brain tumor, people imagine they will see them confined to a wheelchair, drooling, and incapable of communicating. They are relieved when this is not true, but they do not comprehend the significance of the injury to the brain or understand the cognitive changes and losses. In the beginning, patients all too frequently try very hard to behave as they did before diagnosis. They may succeed for a short period, passing as who they used to be, but this play acting is exhausting and very difficult to sustain. It is also confusing for the family to see the patient appear to be unchanged when with others but impaired when with them. However, the patient's need to pretend to be well for others is so overwhelming and difficult for them that they prefer to isolate and avoid extended family and friends, all too often, forcing the family to do the same.
6. Effect of Environmental Stimulation
Sixth, and further adding to the isolation, is the effect of environmental stimuli on the patients. Most complain of being grossly overstimulated by noise and movement in the environment. They have difficulty in public places, that is, malls, the grocery store, restaurants, and so forth. They are so easily distracted that they cannot concentrate on the issue at hand, similar to attention deficit disorder patients. The patients frequently state that they feel like their "heads are going to explode" in these overstimulated situations. They cannot successfully process one idea or one distraction before another occurs, and they become disoriented and uncomfortable, even fearful at times. Unfortunately, this causes them to withdraw from society, even from family functions that previously were sources of comfort and joy and emotional support for them and their families.
7. Loss of Future
Seventh, patients and families are deprived of their futures, their ability to plan and/or see their dreams and aspirations met. They experience continuous anticipatory grief, as they see death as the ultimate outcome. As fatigue increases and quality of life declines, both the patient and their family lose sight of a future without suffering, without stress and anxiety. Secondary to the responsibility of care giving, family members too often neglect their own health, shortening their lives and their ability to regain good quality of life even after the patient dies.
8. Dispersal of Responsibilities
Eighth, the diagnosis of a brain tumor affects every member of the family, causing elevated anxiety and concern. Each, in their own way, must assume some part of the responsibility the patient held before injury. If the patient managed the household finances, someone else has to assume the task. If the patient is a man, a female spouse may have to assume physical chores beyond her ability and strength. If the spouse is a woman, chores such as, cooking, cleaning, and laundry must be assumed by others. Children are not spared the elevated levels of anxiety, and they too, depending on their age, must assume some new responsibilities.
9. Financial Concerns
Ninth, brain tumors are financially devastating for many families. If the patient was the sole source of financial support, the family lifestyle may need to drastically change. If the patient needs constant observation, the spouse may need to quit their job, or hire someone, to enable them to continue to work as minimal, or no, home care for this population is covered by health insurance, because their need is defined as custodial, not skilled care. If the patient does have a skilled need, they may then be eligible to receive some nursing and, possibly, a home health aid to support personal hygiene, but on a very limited basis.
10. Cost to Society
Tenth, there is a cost to both state and federal benefits programs because many patients and families need financial assistance for some time, if not indefinitely, because most patients can never return to work. Patients may be eligible for Social Security Disability Insurance if they have worked and paid in enough quarters to the system. If not, they may be eligible for basic Supplemental Security Income. Many are directed to their local Office of Transitional Assistance (formerly known as welfare offices) to apply for food stamps and any other benefits for which they may be eligible. Families that are eligible for these programs are the lucky ones, as too many families must exhaust their savings and retirement benefits to pay for the services they need.
These ten issues are most prevalent for the patients and families when the tumors are high grade, World Health Organization III/IV and IV/IV, but can also exist for the patients and families with low-grade and benign tumors. All too frequently, the benign tumor patients are dismissed with statements such as "how lucky you are that your tumor is benign" or "it's gone and now you can get back to work." Some benign tumor patients experience more devastating losses than some malignant tumor patients.
Reactions to Stages of Disease
1. Diagnosis (Shock and Horror) Patients and their families react to the diagnosis with shock and fear. They are understandably confused and overwhelmed by what they are told, and they are desperate to find something hopeful to cling to.
2. Waiting for Treatment (Limbo)
This is a very difficult time for the patients and families because they know the diagnosis and they feel helpless as they wait and imagine the tumor growing out of control.
3. Acute Treatment (Nuts and Bolts)
There is apprehension entering this phase in not knowing how they will react or respond to treatment, but it is also empowering because they know they are now doing something proactive. In addition, the treatment routine recreates structure in their lives, and they benefit from the support of staff members as well as the other patients and families they meet.
4. Post Acute Treatment (Processing the Experience)
This is when patients and family members finally have time to process what has happened. The survival adrenaline flow has diminished, much of the structured routine has vanished, and there is time to think. This is one of the hardest times of all for them.
5. Maintenance (Anxiety and Stress)
Whether receiving chemotherapy during this time or being followed by serial scanning, the patients and family members are living with constant uncertainty. Prescan anxiety is exhausting and stressful. Even good results do not necessarily alleviate anxiety for long, as they are all at the mercy of their disease.
6. Progression (Disappointment)
Many patients and their family members state that the second time around is even more difficult than the first, because they already know too much and their coping strategies are exhausted. They can lose hope at this stage and experience disappointment and disillusionment.
7. End Stage (Despair and/or Acceptance)
There may be despair and desperation, acceptance, or both at this stage, depending on the patient and family's sense of reality, their coping strategies, and the support they receive from others.
* Eye contact
Because of the attention issues experienced by patients, it is very important to make direct eye contact with them.
* Speech pattern
Because patients may have delayed cognitive processing, it is important to speak slowly and distinctly.
* Discussion technique
Present ideas clearly and simply to avoid confusion. Only one idea can be presented at a time. Do not interrupt patients, because this causes them to forget what they are trying to say.
* Selection of treatment area
It is important to select a quiet spot lacking in environmental distractions. It should be a comfortable spot where the patient and family can relax. Consideration should be given to individualized needs of the patient, such as if they experience headaches or if they have a light sensitivity or temperature dysregulation.
* Customized cognitive behavior therapy
Patients respond to a directive style, as they frequently lack insight and/or the ability to initiate conversation. Cueing may often be necessary to elicit their feelings and needs.
* Use of humor
Patients respond to humor after a relationship built on trust and understanding has been established. This will be discussed more fully.
It is difficult to create hope in a population with such a poor prognosis, but it is necessary to the patient and family to negotiate the course of treatment ahead of them. The Roman philosopher, Marcus Tullius Cicero, wrote, before the birth of Christ, that "to the sick, while there is life, there is hope," and in the 18th century, the German writer Johann Wolfgang von Goethe wrote that "in all things, it is better to have hope than to despair." It should never be false hope, but sustainable, realistic hope. Hope is not denial. Hope and realistic understanding are not mutually exclusive. Providers can do this by reviewing the patient's presenting state of health and by identifying their individual strengths and prior coping strategies. (Younger adults are generally better able to tolerate treatment and recover from fatigue and memory loss than older adults. Patients who present with no outstanding deficits will generally fare better than those who present with paralysis, aphasia, etc.) It should be emphasized that research is ongoing and that there could be advances in treatment techniques at any time. Hope for symptomatic patients is that the treatment may improve their current quality of life. Hope is fluid. It can change and adjust to each phase of disease and treatment. A patient who is supported by their providers can find hope of their own, at times, through denial and, at other times, through finding meaning and/or creating a meaning or purpose for their disease. Many patients report that their disease gave them the opportunity to slow their lives down, better appreciate what they have, and spend more time with the ones they love.
Inquire how past crises were handled. Is there a past pattern or style that could be utilized in this situation? Has religious belief helped at times like this, and/or has reaching out for informal or formal help been useful? As people mature, they establish informal coping mechanisms for everyday stress and anxiety. Many do not recognize them as such but reap the benefit, nonetheless. Examples of these mechanisms are reading, listening to music, biking, hiking, and so forth. Unfortunately, when needed the most, many of these coping strategies are not available to the patients. Some lose their ability to read or their ability to stay focused, or they are physically impaired and/or do not have the stamina to utilize their particular strategy. In these cases, they frequently become frustrated and overwhelmed by their inability to rid themselves of their anxiety. It is important to work with them to try to find substitutes such as meditation, relaxation exercises, yoga, books on tape, and so forth, but remembering most will need cueing and assistance from their caregivers to initiate any of these activities.
Use of Humor
Laughter is medicinal even for terminal patients. It is an oasis from the constant worry and anxiety. About humor, Victor Hugo said, "Laughter is the sun that drives winter from the human face." And Gandhi offered, "If I had no sense of humor, I would have long ago committed suicide." Although the circumstances are different, the messages are valid. It does not serve people well to wallow in despair. Laughter can strengthen the immune system and reduce stress, equally as effectively as the complementary techniques of relaxation exercises, massage, and acupuncture. Laughter will not extent life, but it certainly will improve the quality of life. It empowers patients by removing them from their everyday worries and can help with moderating pain. Laughter distances the patient from the problem and helps provide them some perspective on their situation and condition.
Introduction to the idea of medication should be done delicately as many patients consider recommendations for anti-anxiety and anti-depressant medications insulting and/or confusing because they associate these medications with mental illness. Introducing them as medications for a physiological condition, explaining that their bodies are fragile, secondary to their disease, and thus, physically incapable of maintaining normal hormonal balance. It helps them to understand that theirs is not an issue of weakness of will but that their bodies are just overwhelmed and need help.
The existence of a brain tumor is a multidiagnostic problem. For these patients, it is brain cancer combined with the symptoms associated with Alzheimer disease, closed head injury, and stroke. Despite the initial lack of pathological evidence of cancer at diagnosis, the low-grade and benign tumor patients may experience many of the same behaviors associated with the high-grade tumor patients, while living with fear, with or without cause, of their tumors evolving to a higher grade. Patients complain of having lost themselves. They grieve for who they used to be and what they used to be able to do. Families speak of having lost their loved one at diagnosis, because they are so different from the people they were. Many feel as if they are living with and caring for strangers. And, because the patients often look fine, the families do not receive the support they need and so deserve. The knowledge and understanding of all providers may be the only validation of experience that the patients and families receive.
The implications for and reactions of patients diagnosed with brain tumors and their families are complex. A high-grade diagnosis is unique, differentiated from other cancers because of the frequent significant cognitive changes experienced by the patients and witnessed by their families. The patients with low-grade and benign tumors can also be subject to cognitive changes and the dread of the unknown, along with the high-grade patients. All brain injury causes changes, no matter the circumstance, and as these changes are invisible to the lay person, it is imperative that providers understand the signs and subtitles that separate these patients from others.
Questions or comments about this article may be directed to Michele Roberta Lucas, MSW, at firstname.lastname@example.org. She was a Single Specialized Social Worker at the Pappas Center for Neuro-oncology, Massachusetts General Hospital, Boston, MA.
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|Author:||Lucas, Michele Roberta|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Jun 1, 2013|
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