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Patient Education Resource Guide

Guiding patients, family members, caregivers, and the larger MSK community to cancer information

Page Overview

The text "Patient Advocacy" in white on a purple flower background.

This page is for those who are interested in advocacy, including cancer disparities and health equity, advance care planning, and palliative care.

Patient Advocacy

Self advocacy is an important concept for people impacted by cancer. Self advocacy refers to an individual's ability to clearly communicate their own desires, needs, and rights. People with cancer can be self-advocates by communicating with their health care team about their wants, needs, and future wishes. Examples of this include therapeutic treatments, palliative care, and resuscitation or CPR orders. 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.

Patient advocacy can take many forms. Sometimes patient advocacy can mean working on a large scale to change attitudes, systems, laws, or policies that impact specific groups and communities. For people with cancer, this might look like lobbying Congress about the price of chemotherapy drugs, or working to make sure everyone has fair access to cancer-related clinical trials.

Cancer Advocacy

As a patient, family member, or caregiver, there are many reasons why your personal experience with cancer may make you interested in cancer 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 cancer 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

Research Advocacy

Cancer Disparities and Health Equity

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

Advance care planning means 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, 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.
  • New York State Health Care Proxy Form
    • This form from the State of New York allows you to identify someone who can make decisions on your behalf if you are not able to make them for yourself.
  • New Jersey State Health Care Proxy Form
    • This form from the State of New Jersey allows you to identify someone who can make decisions on your behalf if you are not able to make them for yourself.

As explored in Advance Care Planning for People With Cancer and Their Loved Ones above, there are life preserving treatments to consider:

  • Cardiopulmonary Resuscitation (CPR) can be given to you if your heart stops beating or you stop breathing.
    • If your heart stops beating:
      • Chest Compressions - physical compressions on your chest to keep your blood flowing.
      • Defibrillator - a machine that sends electrical shocks to your heart.
    • If you stop breathing:
      • Mouth-to-mouth resuscitation - blowing air into your mouth to send oxygen to your lungs.
      • Intubation - breathing tube placed in the airway.
      • Mechanical Ventilation - a machine that breathes for you.
  • Artificial nutrition and hydration provides food and liquids to support your body and keep you alive if you are unable to eat or drink.

If you decide you do not want these invasive procedures or treatments and prefer to have a natural death, these decisions need to be addressed and documented while you are still healthy or able to fully communicate your needs and wishes.

  • Do Not Resuscitate (DNR) Orders - a legal document that tells health care providers you do not want them to provide cardiopulmonary resuscitation (CPR) if your heart stops beating.
  • Do Not Intubate (DNI) Orders - a legal document that tells health care providers you do not want to be intubated or put on mechanical ventilation if you stop breathing.

Palliative Care

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 symptoms, sometimes this kind of care can also mean palliative care.

Palliative Care

There may come a point in your care that you and your doctor decide that the goal can no longer be to treat the cancer, but rather relieve you of symptoms and improve your quality of life. Your health care team will work to make you comfortable so you and your family can focus on spending the time together you have left. You may live for days, weeks, or even many months.

Hospice Care

Hospice care is palliative care for end-of-life. The goal is now to provide comfort and support, while stopping any aggressive treatments or interventions. This can take place at home or in a health care facility.

The goals of hospice are to:

  • Help you live comfortably at the end stage of your life.
  • Help you and your family cope with the changes that are happening.
  • Help you have a peaceful death.

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.