Comprehensive palliative and supportive care
Understanding palliative care
Palliative care is an important part of cancer care. Sometimes called supportive care, it is recommended for all cancer patients from the time of diagnosis, through all stages of treatment, and after treatment is complete to address symptoms of the disease itself or side effects of its treatment.
The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with a life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.
Palliative care is often confused with hospice care or end-of-life care, but they are not the same.
Hospice care is intended specifically for the end-of-life period, generally for patients expected to live for less than six months. Palliative care is recommended for patients at any stage of a life-threatening or chronic illness. The intent is not to treat or cure your disease, but to ease any symptoms and side effects you are experiencing while preparing for, undergoing, and recovering from treatment as well as once treatment is over.
In addition to managing physical needs, palliative care also includes other sources of support to meet your emotional, spiritual, practical, and social needs, and to help you and your family plan for the future. You and your care team will determine which treatments and services are right for you based on your symptoms and other individual needs.
Physical medicine and rehabilitation, anesthesiology, psychology, social work, radiology, and pain medicine are just some of the specialties that can provide palliative care to chordoma patients.
Chordoma Global Consensus Group recommendations
Chordoma experts from the Chordoma Global Consensus Group recommend that all chordoma patients’ care plans include palliative care from the time of diagnosis, through all stages of treatment, as well as after treatment ends.
No matter what treatment you have for chordoma, palliative care can help address pain, mobility and functional issues, mental and emotional health, nutrition, and many other concerns to help you live well while managing your chordoma.
Palliative care can improve the quality of life and well-being of patients dealing with a serious illness by preventing and treating symptoms of the disease or the side effects of its treatment.
What is a palliative care plan?
A comprehensive palliative care plan should consider:
- Pain management, including careful assessment of the cause of your pain. For instance, it is important to determine whether the pain is the result of your original tumor, new tumor growth, or past treatments. Most chordoma patients experience both somatic pain and neuropathic pain, which should be correctly diagnosed and treated using pain management guidelines and specialized pain management techniques as needed. Management of pain should be a critical part of every chordoma patient’s care plan.
- Careful management of other symptoms such as nausea and vomiting, fatigue, breathing or swallowing difficulties, mobility issues, and loss of bowel, bladder, or sexual function.
- Psychological support to help you cope with the emotional difficulties of chordoma. Anxiety and depression are common for many patients dealing with cancer and should be addressed. This can include family-oriented support to help you and your family find ways that you can best support each other.
- Assistance considering end-of-life decisions, such as the creation of advanced medical directives, as well as determining what type of home or other care setting will be best for you and your family that will ensure continuity of care.
Questions to ask your doctors
To help you get the best care possible, we developed lists of questions with the input of chordoma patients and caregivers that can help you think about what you want to ask your doctors, including questions about palliative care.
Caring for yourself during stressful times
This 60-minute webinar is packed with excellent tips and strategies for self-care and very helpful information from the featured speakers, Susie Rinehart and Amy Bragman, LCSW.
Request a personalized survivorship care plan
Life after chordoma treatment can bring new challenges, but you don’t have to face them alone. Our Patient Navigation Service offers personalized survivorship care plans specifically designed for chordoma patients and survivors to provide guidance related to navigating side effects and quality of life changes, coordinating care between doctors, accessing support services, and more.
Note: This service is currently available only for patients based in the United States. We are working toward expanding it to serve international patients in the future.
If you are an international chordoma patient and need support or guidance regarding quality of life or survivorship concerns, please contact our Patient Navigation Service for personalized assistance. We are here to help.
References and further reading
- Stacchiotti S, Sommer J, Chordoma Global Consensus Group. Building a global consensus approach to chordoma: a position paper from the medical and patient community. Lancet Oncology. 2015 Feb;16(2):e71-83. doi: 10.1016/S1470-2045(14)71190-8.
- Stacchiotti S, Gronchi A, Fossati P, et al. Best practices for the management of local-regional recurrent chordoma: a position paper by the Chordoma Global Consensus Group. Ann Oncol. 2017 Jun 1;28(6):1230-1242. doi: 10.1093/annonc/mdx054.
- WHO Definition of Palliative Care. World Health Organization website. https://www.who.int/cancer/palliative/definition/en/.
- Palliative Care in Cancer. National Cancer Institute Website. https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet. October 20, 2017.
- What is Palliative Care? Get Palliative Care website. https://getpalliativecare.org/whatis/.
The information provided herein is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your or your child’s physician about any questions you have regarding your or your loved one’s medical care. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.