Patient and Health Care Consumer Education Guide: 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. Cancer patients can be self-advocates by understanding and communicating their wants and needs to their care team, including things like therapeutic treatments, and future wishes, such as palliative care and resuscitation (CPR orders). It also includes things like having your clinician explain your treatment in a way you can understand and being clear to family, family, friends and caregivers about your wishes and needs if you are unable to speak for yourself. Self advocacy is speaking up for yourself and your needs!

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 cancer patients, 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.

As a patient, family member, caregiver, or interested consumer, 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 shift a change, be it mindsets, legislation, or funding.

Here are a few good places to start if this interests you:

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.

Public Policy Advocacy

• Cancer.Net: Research and Advocacy
  • Patient information from the American Society of Clinical Oncology (ASCO) that introduces cancer research, major policy issues for people with cancer, how cancer care and outcomes can differ between population groups (also known as cancer disparities), and how to become a cancer advocate.
• 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 cancer patients 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.

Advance care planning means making sure you have thought about and written down how you feel about your future health care. These written plans will help both your family and your health care team if you are not able to make or communicate future choices.

• Advance Care Planning
  • This page 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 is similar to the page 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.

Life Preserving Treatments

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

Supportive Care

Supportive care is also called Palliative Care. It is providing support to patients alongside their treatment so they can live their best lives. At MSK, supportive care begins at your very first appointment. It is the attention and care we give our patients no matter their diagnosis and it continues throughout all phases of their care as well as after treatment is complete.

• The goal of supportive care is to relieve symptoms.

Our Supportive Care Team includes an interdisciplinary team of doctors, nurses, social workers, interfaith chaplains, pharmacists, and dedicated administrative personnel.

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 the symptoms and improve your quality of life. The goal is no longer to treat the cancer, but rather treat you the patient, so that you are comfortable and 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 the end of life. The goal is now to provide comfort and support, while stopping any aggressive treatments or interventions. Hospice can take place at home or in a healthcare 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.

Want to learn more about library support?

Visit the MSK Library home page:

• We provide both virtual and in-person resources and services.

Reach out to MSK Library staff:

• The line to reach our Reference team to ask a question is (212) 639-7439.
• Visit our Ask Us page to also reach out via email or chat.

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The content of this guide is a work in progress, and we would love to hear from you to learn:

• What features you would like to see.
• What information is most important to your care or the care of a loved one.