Palliative care is more than just a buzzword. Maybe you have heard about it in passing at your cancer center, or someone brought it up to you when discussing the care of their loved one. Regardless of where you heard the term, palliative care is something all colon cancer and rectal cancer patients would benefit from learning about.
What is palliative care?
According to Dr. Beth Popp, MD FACP, HMDC, FAAHPM, Associate Professor, Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai: “Palliative care is specialized medical care that focuses on relieving the symptoms and stress of any serious illness, including colorectal cancer. Palliative care provides an extra layer of support for the patient and family dealing with a serious illness, with the goal of improving their quality of life. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists and it’s important to know that this team works together with a patient’s other doctors. Palliative care can be provided alongside curative or disease-directed treatment.”
We asked Dr. Popp to answer the top 5 questions patients have about palliative care and colorectal cancer. Check out her responses below!
1. Can I seek palliative care regardless of my colorectal cancer stage?
Palliative care is appropriate for patients who find that the symptoms and stresses of their illness are having a significant negative impact on their quality of life. It doesn’t matter what the patient’s cancer stage is and we advise the earlier the better for anyone dealing with colorectal cancer. You should ask your cancer team for a referral.
In addition, you can go to GetPalliativeCare.org and take the 5 question quiz to see if palliative care might be helpful to you or someone close to you. You can also find a Provider Directory on the website to search what palliative care is near you.
2. Who is part of a palliative care team?
Palliative care teams include specially-trained physicians, nurses, and other specialists. The team is typically headed by a doctor or nurse who can call upon other team members based on the needs of each patient. The team provides expert symptom management and extra time for communication about your goals and treatment options. Other team members may include a social worker, spiritual care provider/chaplain, physical or music therapist, or others such as dietitians or nurses focused on wound care (enterostomal therapist).
The focus is to optimize your care and quality of life. This most includes working with your primary cancer care team. In fact, palliative care specialists have specific training in communication skills so they can enhance communication between you and your other doctors and help you navigate the health system.
3. Does insurance cover palliative care?
Palliative care is a medical specialty, and some or all of the services are covered by most insurance plans, just like other specialized medical care. It’s also important to know that Medicare and Medicaid cover palliative care.
Many palliative care programs work hard to find support for services which may not be covered. For example, there may be a grant to cover music therapy if that is what is needed to help you achieve the best quality of life possible during and after treatment.
4. What might I experience with palliative care (for ex: treatments, etc.)?
Palliative care teams aim to customize the care that matches the needs of each individual patient and family. That means we take time to get to know you and what matters to you. We spend a lot of time listening to you and hearing what concerns you.
We assess and address your needs from a whole-patient point of view – meaning, we explore medical concerns including treatment options and symptom burden, as well as emotional well-being, communication, continuity of care, and caregiver burden.
We spend more time with patients than you may be used to with other medical care you’ve received. We encourage you to include family members or others who are important to you in your care and treatment decisions.
Palliative care teams are thoroughly and specifically trained in symptom management, from the many ways to reduce pain to dealing with fatigue, nausea, and dietary/nutritional needs of those with colorectal cancer.
We understand that coming to the office can be difficult, and will try to coordinate your visits with us along with appointments for other doctors, or check-in by phone to see how you’re doing with new medicine, work with you to adjust doses, etc.
We work in a coordinated way as an interdisciplinary team, sharing information with one another about how you are doing, what has worked so far, and what we can do as team members to help you. We explore what you may find challenging right now, and where we need to focus our work with you.
You can visit GetPalliativeCare.org for more information about how palliative care helps those living with colorectal cancer. There is a page specific to colon cancer, plus a blog on this topic, and a podcast featuring a young mother’s story on how palliative care helped her regain control during a very difficult time.
5. How does the palliative care team help me make treatment decisions?
The team members will meet with you, and if you choose, any family or others who are close to you. They will get to know you as a person, how you are coping with your illness, what values have shaped your life, and your goals related to your health care. They will review your medical records and examine you. The team will connect with your other providers to help understand the options you have, and how these fit in with your goals and values. Ultimately, they will help you make the decisions that are right for you.
Dr. Popp offered some additional advice: As they say in the ads: “Just do it!” It’s worth the time to meet with a palliative care team and hear what they have to offer. They are there to help you have the best quality of life possible while living with colorectal cancer. They will work with your cancer care team and communicate with them, as well as directly with you about any recommendations they have. You aren’t required to accept any of their recommendations. In my experience, there is little downside to an initial consult and it usually helps a great deal.
If the palliative care team is not a direct part of your cancer center or program, make sure to send or bring medical records about your diagnosis and treatments, and any symptom management from all clinicians treating you to date. Be prepared for a thorough initial visit with the palliative care team that could range from 30-60 minutes.
Watch the Palliative Care 101 Webinar with Dr. Popp:
For more information and resources about palliative care, visit GetPalliativeCare.org
Beth Popp, MD FACP, HMDC, FAAHPM
Associate Professor, Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai