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:
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:
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
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.
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.
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.
Our Supportive Care Team includes an interdisciplinary team of doctors, nurses, social workers, interfaith chaplains, pharmacists, and dedicated administrative personnel.
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 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:
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The content of this guide is a work in progress, and we would love to hear from you to learn: