End of Life Care
Although it can be difficult to think about the later stages of life, a brain tumor diagnosis can force you to consider your options. Planning ahead can help you make the most of your life, today and in the future.
Advance Care Planning
Advance care planning is one of the best – and simplest – things you can do for you and your family’s peace of mind. Advance care planning has
Also called an advance directive, the living will communicates your personal wishes for a wide variety of treatments, such as using CPR to restart your heart or keeping you alive with breathing machines. You can also make choices in advance about whether you wish to undergo certain surgeries or submit to blood transfusions and other procedures. Some pointers:
- Get a template with suggested language from your healthcare provider, or download a template for your state from the Internet. Words on the template can be inserted or deleted.
- Review the document with a trusted physician or other healthcare professional so you understand the consequences of each decision.
- Revisit your preferences and update the document on a regular basis. You may change your mind about your directives once you better understand your condition.
This document names a person who will have the responsibility of making decisions about your healthcare based on your living will. Make sure this person is willing to take on the role and will have the time to speak with physicians and other healthcare providers about your care.
This document names a person who will have the responsibility of making decisions about your healthcare based on your living will. Make sure this person is willing to take on the role and will have the time to speak with physicians and other healthcare providers about your care.
More information on advance care planning:
Caringinfo, developed by the National Hospice and Palliative Care Organization, provides detailed information and free resources to help people with advance care planning and other end-of-life decisions.
Burning Questions to Ask Your Doctor: To Treat or Not To Treat? [Webinar]
There are times when treating the tumor can cause more harm than benefit, and yet, oftentimes, stopping treatment can be a difficult decision and perceived as “giving up.”
Join this session to understand important quality of life decisions when weighing the benefits or side effects of additional treatment.
Download the presentation slides here: https://bit.ly/NC24TreatOrNot
What You’ll Learn:
- How treatment can affect the balance of quality and quantity of life
- The benefits of early palliative care treatment
- When the side effects of tumor treatment may outweigh the benefits
Speaker: Heather Leeper, MD, MS, The University of Chicago
Hospice Care
Hospice care is specialized care for the last year of life. People who enter hospice care have chosen not to pursue additional treatment for their conditions. Hospice is neither about speeding up, nor postponing, death. The goals of hospice care are quality of life, comfort, and connecting with loved ones.
Hospice is a system of patient care that relies on family members or other caregivers, supported by professionals who make regular visits and are available around the clock. It usually takes place in the home, although it can also be provided at a hospice unit within a hospital, in a freestanding hospice, in an extended care facility, or in a nursing home. If your symptoms become more difficult to control, you can still be admitted to the hospital for short stays.
Talk to your doctor and your family if you are considering hospice as an option.
What services does hospice provide?
Your hospice service will not provide 24-hour, in-home care. Instead, hospice team members will teach your family and caregivers the skills they need to care for you. To support your family and caregivers, the hospice team will provide:
- Visits from a specially trained hospice nurse
- Bereavement care and counseling to your surviving family and friends
- Carefully managed and supervised pain management
- 24-hour support to answer questions over the phone or to make an emergency visit
- Visits from a nurse’s aide a couple of times per week to help you with bathing, dressing, and other basic activities
- Visits from volunteers who may read to you, help you write letters, bring pets, or provide a break for your caregivers
Does insurance cover hospice care?
Medicare and most private health insurance policies cover hospice, but you usually pay a portion of the cost. Consult with your health insurance company to learn about your options. Medicare beneficiaries may be eligible for additional hospice benefits as well.
More information on hospice care:
National Association for Home Care & Hospice – a national agency locator tool.
Medicare Hospice Benefits – This booklet, published by the U.S. Department of Health and Human Services Centers for Medicare and Medicaid Services, provides detailed information on Medicare coverage of hospice services.
End-of-Life Care for People who Have Cancer – The National Cancer Institute answers frequently asked questions about hospice and end-of-life care.
The National Hospice and Palliative Care Organization – dedicated to improving end-of-life care for patients and their loved ones.
Palliative Doctors – helps connect patients and families with local palliative care and hospice resources. Information provided by the American Academy of Hospice and Palliative Medicine.
Our Support Services are 100% free for patients and caregivers
CareLine
800-886-ABTA (2282) 8:30 AM-5:00 PM CST or info@abta.org
- Information on treatment and care
- Finding brain tumor treatment centers
- Financial assistance resources
- Finding clinical trials
Support Groups
From diagnosis, surgery, and treatment side effects, to recovery and for some—recurrence—you may feel anxious and isolated. Support groups can improve your emotional well-being and quality of life. Virtual and in-person options.
Patient & Caregiver Mentor Support
Our Mentor Program offers patients and caregivers the opportunity to connect with someone who has gone through a similar brain tumor diagnosis, treatment, and care.
Financial Support
Being diagnosed with a brain tumor takes a toll on the patient and their family physically, emotionally, and financially. Medical bills and related costs can quickly add up. We have a list of resources to help.
Webinars
The free educational webinar series is an excellent resource for brain tumor patients and caregivers to learn more about brain tumor types, treatments, well-being topics, and research updates from nationally recognized experts.
Educational Resources
- About Brain Tumors
- Questions to Ask Your Doctor
- Tumor-specific educational materials
- Caregiver Handbook
- Clinical Trials
and more