Navigating the Health System | Caregiver Support

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The treatment of a brain tumor can involve many facets of the healthcare system – hospitals, clinics, insurance companies, rehabilitation centers – as well as wide range of healthcare providers. As caregiver, you are an important part of this team. You may have to help the patient navigate these different settings and people involved in the patient’s care, as well as handle administrative and financial tasks.

Typically, the course of brain tumor treatment involves both surgery and visits to a clinic or medical office that specializes in brain tumors. Both the hospital and the clinic have many different healthcare staff members who will attend to the patient. Understanding how both work can help you obtain the answers and help you need.

The Hospital

After diagnosis, surgery and tests may take place in a hospital. In the hospital, you will meet with several physicians involved in the patient’s care, including the neurosurgeon, who will perform surgery if needed, as well as the neuro-oncologist, who will be the main coordinator for the patient’s brain tumor care. You can work with your insurance company or the patient’s primary care physician to choose a neuro-oncologist who is a member of your insurance plan.

Other useful information about the hospital:

  • Staff schedules vary. Usually, nurses work on 12-hour shifts and are supervised a charge nurse on every shift.
  • If the hospital is affiliated with a university (these hospitals are generally referred to as “academic medical centers”), residents, who are physicians completing their training, usually make their rounds between 6:30 and 7:00 in the morning, and will check on the patient. The residents assume much of the day-to-day care of the patients, but do so under the direct supervision of an attending physician.
  • Attending physicians – physicians who are on-staff at the hospital – may make their rounds at any time during the day, even late into the evening.
  • Hospitalists are physicians working within the hospital. Their care focuses on the hospital stay, and the medical care needed during that stay.
  • The patient’s primary care physician – the doctor who sees the patient for non-emergencies – will also visit the hospital. It’s helpful to coordinate with him or her so you can be present in the hospital room when the doctor visits. This will also give you time to prepare any questions for the doctor, such as asking about recommended neuro-oncologists.

The Clinic

The clinic may be part of a large hospital system, and may be determined by your location or by the parameters of your health insurance plan. The clinic may be a doctor’s office where your neuro-oncologist has office space. Generally, this is where you, the patient and the healthcare team will decide and embark upon a post-surgery brain tumor treatment plan, whether that involves chemotherapy, radiation, or other treatments.

In addition to the physicians and nurses on staff, clinics typically have a wide variety of healthcare services available, staffed by professionals such as social workers, psychologists, and physical and occupational therapists.

Members of the Patient’s Care Team

The patient’s care team will consist of doctors, nurses and other specialists. Some specific types of medical professionals are listed below.

Your primary care team
  1. The neurosurgeon surgically treats many disorders of the nervous system, and may be one of the first specialists you meet in the treatment of the patient’s brain tumor. If you have time to seek out a neurosurgeon before the patient’s surgery, look for one who specializes in treating the type of brain tumor your loved one has.
  2. You’ve already read about the neuro-oncologist. This will typically be a primary coordinator of the patient’s care team. A neuro-oncologist has specialty training in diagnosing and treating cancers of the nervous system. This is the doctor to call if the patient is experiencing side effects from the brain tumor treatment.
  3. The primary care physician is the patient’s local doctor who sees him or her for common health problems. Although this physician does not specialize in brain tumor care, the primary care physician can be a great help finding specialists and helping you coordinate overall care for the patient.
  4. The caring professionals at the ABTA CareLine are also available to answer your questions, provide support and information. Call us at 1-800-886-ABTA or by email at ABTACares@abta.org

  5. A social worker is typically assigned by the hospital and/or clinic to help assess and assist with both patient and caregiver needs. The social worker can help you develop a plan of care, from navigating insurance to obtaining the services the patient needs. 
  6. Some health care teams integrate nurse practitioners into their practice. A nurse practitioner, or advance practice nurse, oversees the management of patient care as recommended by a physician.
  7. For some patients, a nurse navigator may be a primary point of contact within the health care system. These professionals can help you identify educational and support resources at all stages of an illness.
Specialists
  1. The patient may see an endocrinologist, which is a specialist who treats the system of organs that secrete and respond to hormones. An endocrinologist may be consulted if one or more of the patient’s endocrine organs, such as the pituitary gland in the brain, becomes damaged during surgery or treatment.
  2. The neuropathologist analyzes the tumor tissue removed during surgery and prepares a pathology report that identifies the location and type of the tumor. Although it’s unlikely you’ll work directly with the neuropathologist, this report is important to retain for your files because it will typically direct the course of treatment.
  3. A neuropsychologist specializes in understanding how cognitive, emotional and psychological functioning work in the brain. A neuropsychologist can help assess brain damage to these area and construct strategies to improve them. If the patient is experiencing cognitive, behavioral and emotional side effects from brain tumor treatment, you may want to ask your neuro-oncologist or primary physician for a referral to a neuropsychologist.
  4. A psychiatrist may be involved in the patient’s treatment. The psychiatrist is a physician who diagnoses and treats mental health issues such as depression or other mood disturbances that may result from brain tumor treatment.
  5. The patient’s neuroradiologist will oversee radiation therapy.
  6. Rehabilitative specialists, such as occupational therapists, physical therapists and speech therapists can help improve a patient’s strength, mobility or communication.

Communicating with the Medical Team

As you can see, many people will be involved in the care of the patient. You may need to help coordinate care, or get difficult questions answered. However, each caregiver, patient and physician is different. Although it can be helpful to discuss serious and sometimes painful issues that arise, you, the patient, or even the physician may feel reluctant to bring them up. Other times you or the physician may feel confident in communicating with each other on these important issues.

The doctor explained how survival statistics are used and that they are averages. He helped us focus on our own personal experience versus the numbers.

Some caregivers wish their doctors had given them more resources and a better sense of what was to come. Others did not want this information. No matter what, having an open, communicative relationship with the patient’s doctors will lead to the best outcomes for the patient. Consider the following tips.

  • No questions should be considered silly or trivial.
  • There may not be answers to all of your questions. The prognosis of your loved one may remain unknown, even if you’re working with a world-class doctor. However, your doctors and nurses can help you understand the ambiguities and how to handle them.
  • You are the patient’s advocate. You are there to make sure his or her needs are met and that the solutions and treatments are the best for the patient and your family. Read more about your role as caregiver for a brain tumor patient.
  • If your doctors and nurses give you too much information, let them know. Ask them to summarize, or to give you the bottom line.
  • To clarify information, repeat and/or summarize what the doctor or nurse is saying in your own words, and ask if your summary is accurate.
  • Audio-record appointments, or even consider asking a close friend or family member to come to the appointment who is good at remembering and recording information. Read more in about how to ask for help.
  • When you need more information, ask medical professionals to recommend reading materials or websites.
  • The more you know about brain tumor symptoms, side effects, and brain tumor care options, the more you will be able to ask about whether or not these various treatments and services will be helpful to the patient and be able to request them if needed.
  • Ask to speak to a financial counselor or social worker if you have billing or insurance questions.
  • Although you may wish to speak with the doctor privately, without the patient present, you may not be able to do this because of patient confidentiality rules.
  • Finally, it is effective to prepare for doctor visits. See the section below for more information.

Appointment Preparation

Whether you’re meeting with doctors in the hospital or at a clinic, it is helpful to be prepared for appointments. Having a list of questions, and keeping track of the patient’s symptoms and side effects can help, particularly when you have limited time with the medical professional.

In the beginning stages of the illness, you may want to discuss:

  • The cause of the brain tumor
  • Medical tests and procedures needed, along with timeframes
  • Contact information for the medical team
  • The best person to contact first when you need help or have questions
  • Treatment information: options, timeframes and potential outcomes
  • Potential lifestyle changes
  • How to handle medical emergencies

Before routine clinic appointments, you can prepare by doing the following:

  • Talk to the patient about topics he or she wants to bring up with the doctor.
  • Bring your health care binder with your list of running questions, log of patient symptoms and side effects, and medication log.
  • Side effects and symptoms, no matter how trivial they seem, are worth mentioning during appointments. The physician may be able to provide advice or medication to manage symptoms and increase the quality of life for both you and the patient.

Health Insurance Tips and Resources

If you haven’t dealt with a complex medical condition in the past, you may not know the details of your health insurance policy. Consider the following tips.

  • It can be helpful to have a printed copy of your policy available when you’re talking to administrators and social workers.
  • If you need help with insurance issues, the social worker assigned to the patient’s case is often a good resource. 
  • Some insurance companies provide a dedicated patient representative to be a single point of contact, which can be extremely helpful as that person grows to understand the patient’s case. Ask your insurance company whether they provide this service.
  • The ABTA provides information about various types of insurance, including resources if you are uninsured. A listing of financial and medical assistance resources is also available.

Getting a Second Opinion

Often, patients and caregivers want a second opinion about the patient’s brain tumor diagnosis and treatment, but are concerned that asking for one will insult the doctor or create an awkward relationship or even impact the care they receive.

However, the opposite is usually true. Many doctors will encourage a second opinion, either to confirm their diagnosis and treatment plan, or to get another point of view. In some cases, insurance companies recommend or even require a second opinion.

A physician who is strongly against getting a second opinion may not be a doctor with whom you want to work. Most physicians consider getting a second opinion a routine and necessary part of the diagnosis and treatment of a brain tumor.

Clinical trials

In addition to getting a second opinion, you and the patient may want to investigate whether the patient is eligible for a clinical trial. A clinical trial offers new or experimental treatments to qualified brain tumor patients who volunteer to receive a treatment that otherwise would be unavailable to them. These treatments include drugs, surgical procedures, and methods for managing side effects.

If you are interested in participating in a clinical trial, you can ask a member of the patient’s treatment team. You can also visit TrialConnect®, the American Brain Tumor Association’s clinical trial matching service. You can search for clinical trials that match the patient’s diagnosis and treatment history, as well as connect with doctors and nurses who are conducting the trials. You and the patient can then share this information with the patient’s doctor.

Resources that Fit Your Needs

Many caregivers successfully navigate the health system to get the resources that are right for them and the patients they care for. Here’s what a few had to say:

The insurance company contact was extremely supportive. She answered any sort of payment and coverage questions we had.

I was disappointed with the first psychologist we were assigned, but I asked the doctor for additional recommendations and found someone who helped a lot throughout the journey.

Having a nurse navigator to help with appointments and care was helpful. We also had another nurse who was compassionate and truthful with me as to what was going on or going to happen.

Others who have been through the process can also be excellent resources. You can connect with them by finding a brain tumor support group in your area, or by joining an online support group, such as ABTA Connections.