Cancer and its treatment often cause side effects. Relieving a person’s symptoms and side effects is an important part of cancer care. This approach is called symptom management, supportive care, or palliative care. Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care.
Understanding palliative care
People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.
Palliative treatments often include medication, nutritional support, relaxation techniques, spiritual support, emotional support, and other therapies. You may also receive palliative treatments similar to those used to eliminate the cancer, such as chemotherapy, surgery, or radiation therapy. That is why it is important to understand the goals of each treatment in your care plan.
Children with cancer should also receive palliative care. Parents usually work with the health care team to manage symptoms so their children are as comfortable as possible starting from diagnosis. Family members, including siblings, may receive counseling as part of palliative care to better cope with the child’s diagnosis.
Essential parts of palliative care
The goals of palliative care include:
Treating symptoms, including pain, nausea, breathlessness, insomnia, and other physical issues caused by cancer or its treatment
Making sure patients and caregivers understand the diagnosis and goals of treatment
Providing guidance for making treatment decisions
Working with the patient’s other doctors and providing referrals to other health care providers as needed
Providing support for the patient’s emotional and social needs, spiritual needs or concerns, and practical needs
Providing support for caregivers, and other family members and friends
Difference between palliative care and hospice care
Although you may hear “palliative care” and “hospice care” used in similar ways, they are not the same. Palliative care is given at every step of the treatment process. It provides an extra layer of support for people with any stage of cancer. Hospice care is a specific type of palliative care. It is only provided to people with cancer who are expected to live 6 months or less.
If you have advanced cancer, your doctor may suggest treatments to improve symptoms or treatments directed at the cancer. If you choose to stop treatment for the cancer, this does not mean you have stopped “fighting” the disease. It also does not mean your health care team has given up. Instead, the focus may be on relieving symptoms and allowing for additional support in all areas of your life.
When a person decides to begin hospice care, a member of the palliative care team helps with the transition. He or she can also help address the physical and emotional issues that come with that choice. Learn more about hospice care.
When and where palliative care is given
Ideally, palliative care starts at diagnosis and continues throughout all stages of the disease. ASCO recommends that all patients with advanced cancer receive palliative care early on and along with cancer treatment. And, for those newly diagnosed with advanced cancer, ASCO recommends that palliative care is offered within 8 weeks after diagnosis.
Your oncologist will often help manage the symptoms and side effects of treatment. This is considered a part of palliative care. When needed, your oncologist works with palliative care specialists to manage complex side effects or develop a long-term symptom management plan.
You may receive palliative care in a doctor’s office, hospital, cancer center, long-term care facility, or your home. ASCO recommends that patients ask about available palliative care services and meet with dedicated palliative care teams, who can provide a range of services.
However, where you receive palliative care depends on the recommended treatments and the resources in your area. Talk with your doctor, nurse, or oncology social worker about your options.
The palliative care team
A number of people may make up your palliative care team, including:
Oncologist. An oncologist is a doctor who specializes in treating cancer. Often, your oncologist serves as the leader of your health care team. He or she is in charge of designing your treatment plan and deciding on medicines and dosing. He or she may talk with other health care professionals to create your palliative care plan. These could include a palliative medicine physician or pain specialist.
Palliative medicine physician. This is a doctor who specializes in both palliative care and hospice care. He or she works with the health care team to relieve symptoms and side effects. A palliative medicine physician will also talk with a patient to make sure the treatment plan is aligned with his or her goals and values.
Nurses and advanced practice nurses. The nurses on your team help manage pain and other symptoms. They also act as the main contact for the rest of your health care team. If you receive palliative care at home, nurses may visit you regularly to ensure you receive the care you need.
Social workers. A social worker provides counseling for you and your family and arranges family meetings. A social worker may also help with practical issues like transportation and can connect you with local resources. Social workers also help with discharge from the hospital and finding in-home help, or, if necessary, hospice care.
Pain specialist. Pain specialists, or pain medicine doctors, are experts at finding the cause of pain and treating it. They may prescribe medication, recommend a rehabilitation program, and/or perform pain-relieving procedures. An oncologist or palliative medicine physician may be able to control your pain without referring you to a pain specialist.
Chaplain. A chaplain is usually a member of a specific religion. He or she is trained to listen to patients’ and family members’ concerns, especially about death and dying. Chaplains are also available to discuss other faith-related and spiritual matters.
Dietitian. A dietitian can help address nutritional challenges, such as nausea or appetite loss. Dietitians may also provide advice about nutritional supplements and help create specialized eating plans.
Physical and occupational therapists. A physical therapist helps maintain mobility and improve how well a person moves. Physical therapists also develop exercise programs to maintain or improve your physical strength during and after treatment. Occupational therapists typically focus on daily tasks and functioning, especially upper body movement.
Child life specialists. These trained professionals specialize in helping children and their families understand a child’s serious illness. They also assist siblings through the experience.
Volunteers. Many palliative care programs have trained volunteers that visit with patients who want companionship and emotional support. Volunteers often perform simple tasks, such as reading out loud or writing notes, or can simply sit and talk.
Grief and bereavement coordinator. A grief coordinator counsels family members who are facing or have suffered the loss of a loved one. They have specialized training in social work or psychology. Learn more about grief and loss.
Paying for palliative care
Individual health insurance plans, Medicaid, and Medicare often cover palliative care, just like oncology care. If you have concerns about the costs involved in palliative care, talk with your health care team. A hospital social worker can help you explore payment options. Learn more about managing the cost of cancer care.
Talking about palliative care
An important part of palliative care is talking about your diagnosis, treatment, and needs. These conversations help clarify your goals and expectations. The best palliative care occurs when patients and their families work together with the health care team.
Here are some practical tips to help promote good communication with your health care team:
Ask the doctor to explain your diagnosis, treatment plan, and prognosis. Prognosis is the chance of recovery. These may change over time, so continue to have open, honest discussions with your doctor. Taking notes or bringing a family member or friend along when you see the doctor may help you remember more of the information.
Ask your health care team to explain if you don’t understand an explanation, description, or unfamiliar medical word.
Tell the doctors and nurses about any pain, discomfort, or other side effects, even if you feel they are not serious. Often there are many options for relieving symptoms. However, the health care team needs to know about them to help you feel better.
Keep track of your symptoms and side effects. Write down what they are, how often they occur, and how severe they are. This will help the doctor identify the cause and find solutions.
Don’t be afraid to ask questions. You may want to write your questions down before each appointment. It is important to ask about your social, emotional, functional, and spiritual needs, as well as questions about your health. Here is a basic list of questions to ask the doctor to help you get started.
Talk with your doctor about the palliative care services available to you. You may want to ask for a referral to a palliative care specialist. Oncologists welcome the support and information palliative care specialists provide.
Center to Advance Palliative Care: GetPalliativeCare.org
National Hospice and Palliative Care Organization: CaringInfo
National Institute of Nursing Research: Palliative Care’s Many Benefits