Patient Education Resource Guide

Self advocacy refers to an individual's ability to clearly communicate their own desires, needs, and rights, and is an important concept for people impacted by cancer. People with cancer can be self-advocates by communicating with their health care team about their wants and future wishes. Examples of this include therapeutic treatments, resuscitation or CPR orders, and palliative care. Self advocacy also includes things like having your doctor explain your treatment in a way you can understand and being clear to family, friends, and caregivers about your wishes if you are unable to speak for yourself.

Patient & Community Education has a resource which explores this: A Guide for Adolescents and Young Adults (AYAs): How To Be a Self-Advocate.

There are many reasons why your personal experience with cancer may make you interested in advocacy. Being a cancer advocate can take the forms of:

• Public policy advocacy: Building interest across communities and within the government at local and national levels to influence how something is viewed and the policies surrounding it.
• Research advocacy: Bringing a perspective from outside of research to advance how different components of research are supported and shared, such as laboratory work, clinical trials, or education, and how this is translated to care (including access, value, and quality).

There can be a lot of overlap between the two, and both involve an individual or group raising awareness on key topics to make a change, be it mindsets, legislation, or funding. Here are a few places to start if this interests you:

Public Policy Advocacy

• National Comprehensive Cancer Network (NCCN): Advocacy and Support Groups
  • In addition to the NCCN Policy and Advocacy Program, they also maintain a list of advocacy and support groups which can be searched by mission or cancer type. Four to explore include:
    • American Association for Cancer Research (AACR): Patient Advocacy: Details about the AACR Scientist↔Survivor Program® and other opportunities for patient advocates.
    • American Cancer Society (ACS): Cancer Action Network: Learn about ways to elevate cancer at a national level by taking action, fundraising, and volunteering.
    • CancerCare: Advocacy and Public Policy: Their endorsed policies and advocacy and policy activities are listed here, but there is also a separate page for all resources tagged with advocacy.
    • Patient Advocate Foundation: Founded to solve the issues that people with cancer in the United States may face when trying to access and pay for care, this nonprofit organization now has case managers who work with patients with various illnesses.
    • Triage Cancer: Support for the legal and practical issues that sometimes arise with a cancer diagnosis, including educational events, extensive resources, and other materials.

Research Advocacy

• National Cancer Institute (NCI): Office of Advocacy Relations
  • Information about how they engage with the cancer advocacy community and how to contact them to learn more.

There are sometimes disparities, known as differences or inequalities, between population groups who have cancer.

The National Cancer Institute (NCI) on their page Cancer Disparities gives examples of these groups as those "defined by race, ethnicity, disability, gender identity, geographic location, income, education, age, sexual orientation, national origin, and other characteristics."

Addressing these disparities and achieving health equity, where everyone has the opportunity to prevent and treat their cancers, can involve advocacy.

Advance care planning means being an advocate for yourself, and making sure you have thought about and written down how you feel about your future health care. Patient & Community Education provides the following to help you explore how to plan for a time when you are not able to make or communicate choices.

• Advance Care Planning for People With Cancer and Their Loved Ones
  • This guide describes how you can protect your right to make your own decisions about your health care. This means choosing who will make health care decisions for you if you cannot make them yourself, understanding advance directives, talking about your beliefs and goals (including life preserving treatments), and documenting your choices.
• How to Be a Health Care Agent
  • This guide is similar to the one above, but goes further about what you need to do as a health care agent, with a focus on communication. It contains information about how to talk with your loved one about the care they would want if they are not able to speak for themselves.

Part of self advocacy is understanding your treatment and care, and knowing your options, even if treatment is stopped. Here are different types of care you may experience as a patient.

• Supportive Care
  • Supportive care is about providing support to patients alongside their treatment so they can live their best lives. As the goal of supportive care is to relieve the symptoms and emotional stress surrounding an illness, sometimes this kind of care can also mean palliative care.
• Palliative Care
  • Palliative care is specialized care for people with serious illnesses. It can start at any time and work alongside treatments, which is why it can sometimes be called supportive care. The focus of this care is improving your quality of life by addressing your physical, emotional, and spiritual needs.
  • There may come a point in your care when you and your doctor decide that the goal can no longer be to treat your cancer. Palliative care here means your health care team will work to make you comfortable so you and your loved ones can focus on spending your remaining time together.
• Hospice Care
  • Hospice care is palliative care for end-of-life. Your health care team will aim to provide comfort and support, while stopping any aggressive interventions. This can take place at home or in a health care facility.
  • The team behind Patient & Community Education has written a thoughtful resource which explores this transition: Toward the End of Life: What You and Your Family Can Expect. It is available in a variety of languages.