Top 7 Questions About Palliative Care

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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. 

Understanding Palliative Care

According to 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 colon or rectal cancer. Palliative care provides an extra layer of support for the patient and family dealing with a serious illness, with the goal of improving the patient’s 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 and Stacy Fischer, MD, Associate Professor of Medicine, University of Colorado of Medicine, to answer the top 7 questions patients have about palliative care and colon and rectal cancer.

Watch the Palliative Care 101 Webinar with Dr. Popp:

1. Can I seek palliative care regardless of my colon or rectal 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 – the earlier, the better for anyone dealing with colon or rectal cancer. 

You can go to GetPalliativeCare and take the five 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 their website to search for palliative care  near you. 

sodium chloride bag in a hospital

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 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?

Nearly all public and private insurances including Medicare or Medicaid will cover inpatient consultation. Most will also cover community-based palliative care services. Palliative care is increasingly recognized as a mainstream part of comprehensive cancer care. The American Society of Clinical Oncology, American Cancer Society, National Comprehensive Cancer Network, and the Institute of Medicine have all endorsed palliative care as part of quality cancer care. 

Many palliative care programs work hard to find support for services, which may not be covered. If you would like to find out more about palliative care check out this website.

4. What’s the difference between palliative care and hospice care?

One common barrier to patients accepting palliative care is the mistake of equating palliative care with hospice care. With hospice care, all the treatments are directed toward comfort, and patients rarely receive life-prolonging therapies. Hospice is offered within the last six months of life. In contrast, palliative care can be offered at the time of diagnosis of a life-limiting illness, even when patients may be expected to live years. 

5. What might you experience with palliative care? 

Colorectal cancer survivors hugging

Palliative care teams aim to customize the care that matches the needs of each individual patient and family. That means the team takes time to get to know you and what matters to you. The team also spends a lot of time listening to you and hearing what concerns you. 

Your palliative care team assesses and addresses your needs from a whole-patient point of view: We explore medical concerns including treatment options and symptom burden, as well as emotional well-being, communication, continuity of care, and caregiver burden. Palliative care teams spend more time with patients than you may be used to with other medical care you’ve received. The team encourages 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 colon or rectal cancer.  

Palliative care teams understand that coming to the office can be difficult, and they often try to coordinate those visits along with appointments for other doctors, or check-in by phone to see how you’re doing with new medicine, and work with you to adjust doses or discuss side effects. 

A palliative care team works 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 the teams can do collectively to help you. Your palliative care team explores what you may find challenging right now and where to focus their work with you.

6. How does the palliative care team help with treatment decisions?

Team members will meet with you, any family, or others who are close to you, if you choose. The palliative care team 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. The team will review your medical records and examine you. They will connect with your other providers to help understand the options you have, and how these fit in with your goals and values. Ultimately, the team will help you make the decisions that are right for you.

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. 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. There is little downside to an initial consultation, and palliative care 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, 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 to 60 minutes.

7. Where can you get palliative care?

A growing number of hospitals and outpatient cancer centers now have palliative care consultant services. In addition, many hospice programs have expanded to include separate community-based palliative care programs. Ask your provider or social worker what might be available at your healthcare center or in your community. It is also important to remember that a palliative approach can be incorporated by your own primary care provider or oncologist. Here are some of the core things you might want to talk about with your oncology care provider:

  • Pain or other symptoms such as constipation, nausea, anxiety, depression, and fatigue
  • Prognosis, such as what kind of information do you want to know about your prognosis?
  • Advance care planning, for example, having your healthcare providers lead you through a discussion or consider a more DIY start through patient-centered websites, such as PrepareForYourCare.

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