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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 three steps:

  1. Decide how you want your healthcare team to act if you are gravely ill and are unable to communicate your wishes
  2. Share your advance care planning documents with your family, your healthcare team, and your designated representative
  3. Write your wishes down in advance care planning documents valid in your state (typically a living will/advance directive and healthcare power of attorney)

There are two major advance care planning documents: a living will and a healthcare power of attorney.

Living Will

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.

Healthcare Power of Attorney

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.

Five Wishes

You can streamline your advance care planning by filing out a simple form that covers both advanced directives and power of health care attorney. This Five Wishes form, recognized in 42 states, was created by the non-profit organization Aging with Dignity. The five wishes are:

  • Who you want to make health care decisions for you
  • The kind of medical treatment you want or do not want
  • How comfortable you want to be
  • How you want people to treat you
  • What you want your loved ones to know

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.

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.