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Support Services for Brain Tumor Patients
Having a brain tumor can be overwhelming. Support services can help the patient and family members cope with the emotional and practical issues that brain tumor patients face. [hilghlight medical surgical, not Kimmel] Johns Hopkins offers:
- Support groups
- Support, services and counseling
- Spiritual support
- Information about supportive care
- Information about financial assistance
- Resources about brain tumors, cancer and more
The Department of Medical/Surgical Social Work at Johns Hopkins Hospital provides quality support services to patients and families through expert assessment and counseling, as well as knowledge of systems and resources that can help you navigate the complexities of medical and surgical care.
Department of Spiritual Care and Chaplaincy: Seven days a week, 24 hours a day, any patient, family member or visitor may request to speak with a chaplain, and any staff member can make a referral to the pastoral care team.
Supportive care consists of equipment and services to help patients recover and improve their comfort and quality of life. It also includes end-of-life care. Johns Hopkins will provide patients will information about supportive care that is appropriate to their situation.
Durable medical equipment
Durable medical equipment is the term used for equipment such as a hospital bed, wheelchair, walker, bedside commode and shower chair. Insurance coverage varies, so it is best to contact the patient’s insurance company or treatment team for more information.
Acute rehabilitation hospital
Acute rehabilitation hospitals are sometimes an option for patients who have lost some of their mobility and have the potential to regain it. Typically, in order to be admitted to an acute rehabilitation hospital, a person must:
- Be able to tolerate at least three hours of rehabilitation exercises every day
- Be able to benefit from the rehabilitation exercises
- Have insurance coverage for acute rehabilitation services.
Most, but not all, health insurance policies have some coverage for acute rehabilitation hospitalization. For more information about this option, contact the patient’s treatment team.
Sub-acute rehabilitation facility
Sub-acute rehabilitation facilities provide rehabilitation services for people who have lost some of their mobility and ability to perform activities of daily living. Typically, in order to be admitted to a sub-acute rehabilitation facility, a person must:
- Be able to tolerate an hour of rehabilitation exercises every day
- Be able to benefit from the exercises
- Have insurance coverage for sub-acute rehabilitation services
Most often sub-acute rehabilitation facilities are housed in skilled nursing facilities (also called nursing homes).
Skilled nursing facility
Skilled nursing facilities, also called nursing homes, provide 24-hour care to their residents, who live in rooms at the facility. Residents may be admitted for a short stay, such as to receive sub-acute rehabilitation services. People may also be admitted for longer stays, such as when they can no longer be cared for at home. Skilled nursing facilities vary in the accommodations and services they offer.
Medicare.gov contains information about skilled nursing facilities and a list of skilled nursing facilities, as well as the results of Medicare’s periodic inspections of these facilities.
Home health care
Home health care can include many types of services provided in the home, such as:
- Durable medical equipment
- Home health aide services
- Medical social services
- Occupational therapy
- Part-time skilled nursing care
- Physical therapy
- Speech-language therapy
Most health insurance policies have some coverage for home health care, but a patient must generally have a “skilled need” (i.e., something a nurse or other professional can do that the family would not be capable of doing) in order for insurance to cover the service. Check with the patient’s treatment team to determine whether these services would be appropriate.
Hospice care helps patients who are no longer pursuing curative or life-prolonging treatment for their illness but who want aggressive symptom management. The goal is to enable each patient to maintain the highest quality of life possible for the duration of his or her life. Hospice care also provides support to the patient’s family, both before and after the person’s death.
Home hospice care
Home hospice care is the highest level of home health care. It is reserved for those who need it the most, generally people who are no longer pursuing curative or life-prolonging treatment for their illness but who do want aggressive symptom management. Home hospice care is provided by a team of providers, including a nurse, social worker, certified nursing assistant, clergy, volunteers and others.
The National Hospice and Palliative Care Organization has more information about home hospice care.
Inpatient hospice care
Inpatient hospice facilities provide 24-hour care and lodging to people at the end of life. Many home hospice agencies have an inpatient facility available for people who do not wish to die at home or who require care that cannot be provided in the home. Some inpatient hospice facilities are free-standing, while others are housed in skilled nursing facilities or hospitals.
The National Hospice and Palliative Care Organization has more information about inpatient hospice care.
Private duty care
Private duty care is a form of in-home care that can help with meal preparation, companionship, bathing and other tasks. Health insurance usually does not pay for this type of care, but it is always a good idea to check with the patient’s insurance company to be sure.
Fees range from less than $10 to more than $20 per hour. It is important to negotiate up-front with a private duty agency for the necessary services.
Considerations for private duty care
Before contacting an agency about private duty care, consider the following:
- What does the patient need help with, e.g., bathing, driving, lifting and/or shopping?
- How many days per week and hours per day does the patient need help?
- How long will the patient need this help (one week, a month, etc.)?
- What type of insurance does the agency carry (if their employee is injured while at the patient’s home)?
- Will the patient or a caregiver have the opportunity to interview the care provider in advance?
- If the agency employee is a “no show,” will the agency send someone else?
For more information about private duty care:
- Ask the patient’s treatment team
- Ask other people which agencies they have used
- Search online for “home care” or in the phone book under “nursing”
Financial assistance may be available for medication and brain tumor treatment.
Financial aid for medication
Many people receiving treatment for brain tumors require prescription medications, some of which can be quite expensive. While many insurance policies include a prescription benefit, not all do.
Many pharmaceutical companies have assistance programs for some of their medications. Many of the programs have very flexible income requirements, so they are often worth investigating. Each company’s program is different, so the patient may need to fill out a different application form for each medicine.
Patients who are having difficulty affording prescription medications should learn more about the following available pharmaceutical assistance programs:
- Medication Assist: 401-729-3284
- Needy Meds
- Partnership for Prescription Assistance: 1-888-4PPA-NOW (1-888-477-2669)
Medicaid or medical assistance
Medicaid, sometimes referred to as medical assistance, is state-funded health care insurance (with support from the federal government) that assists low-income people who meet eligibility criteria. Some prescription medication coverage is usually included as a benefit of Medicaid.
Criteria are state specific. For more information, contact the state health department for the state where the patient lives.
More resources for financial assistance
- American Cancer Society: 1-800-ACS-2345
- BTS Cares: 1-800-770-8287
- Cancer Care, Inc.: 1-800-813-HOPE
- Cancer Fund of America: 1-800-578-5284
- Genentech Access to Care Foundation: 1-866-4-ACCESS (866-422-2337)
- Hill-Burton Free Health Care: Hill Burton Hotline: Maryland: 1-800-492-0359 | Other states: 1-800-638-0742
- Medicine Program: Health Benefits: 1-800-7-1020RX
- Patient Advocate Foundation: 1-800-532-5274 | Co-pay relief: 1-866-512-3861
- Social Security Administration: 1-800-772-1213
This section contains resources about:
- Brain tumors
- Research and clinical trials
- Transportation assistance
- Other related resources
Request an Appointment
Please fax your latest MRI reports and referrals (if necessary) to 410-630-7865.
Request an Appointment
Adult Neurology: 410-955-9441
Pediatric Neurology: 410-955-4259
Adult Neurosurgery: 410-955-6406
Pediatric Neurosurgery: 410-955-7337
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