What is Palliative Care?
This fact sheet answers common questions patients may have about palliative care.
- Palliative care is comfort care given to a patient who has a serious or life-threatening disease, such as cancer, from the time of diagnosis and throughout the course of illness. It is usually provided by a specialist who works with a team of other health care professionals, such as doctors, nurses, registered dieticians, pharmacists, and social workers.
- Palliative care is different from hospice care. Although they share the same principles of comfort and support, palliative care begins at diagnosis and continues during cancer treatment and beyond.
- Hospitals, cancer centers, and long-term care facilities provide palliative care. Patients may also receive it at home. Physicians and local hospitals can provide the names of palliative care or symptom management specialists.
- Palliative care addresses the emotional, physical, practical, and spiritual issues of cancer. Family members may also receive palliative care.
- Research shows that palliative care improves the quality of life of patients and family members, as well as the physical and emotional symptoms of cancer and its treatment.
What is palliative care?
Palliative care is care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. The goal of palliative care is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to the related psychological, social, and spiritual problems. The goal is not to cure. Palliative care is also called comfort care, supportive care, and symptom management.
When is palliative care used in cancer care?
Palliative care is given throughout a patient's experience with cancer. It should begin at diagnosis and continue through treatment, follow-up care, and the end of life.
Who gives palliative care?
Although any medical professional may provide palliative care by addressing the side effects and emotional issues of cancer, some have a particular focus on this type of care. A palliative care specialist is a health professional who specializes in treating the symptoms, side effects, and emotional problems experienced by patients. The goal is to maintain the best possible quality of life.
Often, palliative care specialists work as part of a multidisciplinary team to coordinate care. This palliative care team may consist of doctors, nurses, registered dieticians, pharmacists, and social workers. Many teams include psychologists or a hospital chaplain as well. Palliative care specialists may also make recommendations to primary care physicians about the management of pain and other symptoms. People do not give up their primary care physician to receive palliative care.
If a person accepts palliative care, does it mean he or she won't get cancer treatment?
No. Palliative care is given in addition to cancer treatment. However, when a patient reaches a point at which treatment to destroy the cancer is no longer warranted, palliative care becomes the total focus of care. It will continue to be given to alleviate the symptoms and emotional issues of cancer. Palliative care providers can help ease the transition to end-of-life care.
What is the difference between palliative care and hospice?
Although hospice care has the same principles of comfort and support, palliative care is offered earlier in the disease process. As noted above, a person's cancer treatment continues to be administered and assessed while he or she is receiving palliative care. Hospice care is a form of palliative care that is given to a person when cancer therapies are no longer controlling the disease. It focuses on caring, not curing. When a person has a terminal diagnosis (usually defined as having a life expectancy of 6 months or less) and is approaching the end of life, he or she might be eligible to receive hospice care. More information is available in the National Cancer Institute (NCI) fact sheet Hospice athttp://www.cancer.gov/cancertopics/factsheet/Support/hospice on the Internet.
Where do cancer patients receive palliative care?
Cancer centers and hospitals often have palliative care specialists on staff. They may also have a palliative care team that monitors and attends to patient and family needs. Cancer centers may also have programs or clinics that address specific palliative care issues, such as lymphedema, pain management, sexual functioning, or psychosocial issues.
A patient may also receive palliative care at home, either under a physician's care or through hospice, or at a facility that offers long-term care.
How does a person find a place that offers palliative care?
Patients should ask their doctor for the names of palliative care and symptom management specialists in the community. A local hospice may be able to offer referrals as well. Area hospitals or medical centers can also provide information. In addition, some national organizations have specific databases for referrals. For example, the Center to Advance Palliative Care has a list of providers by state at http://www.getpalliativecare.org/providers on the Internet. The National Hospice and Palliative Care Organization's Web site also has a list of providers athttp://www.nhpco.org on the Internet.
What issues are addressed in palliative care?
Palliative care can address a broad range of issues, integrating an individual's specific needs into care. The physical and emotional effects of cancer and its treatment may be very different from person to person. For example, differences in age, cultural background, or support systems may result in very different palliative care needs.
Comprehensive palliative care will take the following issues into account for each patient:
- Physical. Common physical symptoms include pain, fatigue, loss of appetite, nausea, vomiting, shortness of breath, and insomnia. Many of these can be relieved with medicines or by using other methods, such as nutrition therapy, physical therapy, or deep breathing techniques. Also, chemotherapy, radiation therapy, or surgery may be used to shrink tumors that are causing pain and other problems.
- Emotional and coping. Palliative care specialists can provide resources to help patients and families deal with the emotions that come with a cancer diagnosis and cancer treatment. Depression, anxiety, and fear are only a few of the concerns that can be addressed through palliative care. Experts may provide counseling, recommend support groups, hold family meetings, or make referrals to mental health professionals.
- Practical. Cancer patients may have financial and legal worries, insurance questions, employment concerns, and concerns about completing advance directives. For many patients and families, the technical language and specific details of laws and forms are hard to understand. To ease the burden, the palliative care team may assist in coordinating the appropriate services. For example, the team may direct patients and families to resources that can help with financial counseling, understanding medical forms or legal advice, or identifying local and national resources, such as transportation or housing agencies.
- Spiritual. With a cancer diagnosis, patients and families often look more deeply for meaning in their lives. Some find the disease brings them more faith, whereas others question their faith as they struggle to understand why cancer happened to them. An expert in palliative care can help people explore their beliefs and values so that they can find a sense of peace or reach a point of acceptance that is appropriate for their situation.
Can a family member receive palliative care?
Yes. Family members are an important part of cancer care, and, like the patient, they have a number of changing needs. It's common for family members to become overwhelmed by the extra responsibilities placed upon them. Many find it difficult to care for a relative who is ill while trying to handle other obligations, such as work and caring for other family members. Other issues can add to the stress, including uncertainty about how to help their loved one with medical situations, inadequate social support, and emotions such as worry and fear. These challenges can compromise their own health. Palliative care can help families and friends cope with these issues and give them the support they need.
How is palliative care given at the end of life?
Making the transition from curative treatment to end-of-life care is a key part of palliative care. A palliative care team can help patients and their loved ones prepare for physical changes that may occur near the end of life and address appropriate symptom management for this stage of care. The team can also help patients cope with the different thoughts and emotional issues that arise, such as worries about leaving loved ones behind, reflections about their legacy and relationships, or reaching closure with their life. In addition, palliative care can support family members and loved ones emotionally and with issues such as when to withdraw cancer therapy, grief counseling, and transition to hospice. For more information, see the NCI PDQ® information summary Last Days of Life at http://www.cancer.gov/cancertopics/pdq/supportivecare/lastdays on the Internet.
How do people talk about palliative care or decide what they need?
Patients and their loved ones should ask their doctor about palliative care. In addition to discussing their needs for symptom relief and emotional support, patients and their families should consider the amount of communication they need. What people want to know about their diagnosis and care varies with each person. It's important for patients to tell their doctor about what they want to know, how much information they want, and when they want to receive it.
Who pays for palliative care?
Palliative care services are usually covered by health insurance. Medicare and Medicaid also pay for palliative care, depending on the situation. If patients do not have health insurance or are unsure about their coverage, they should check with a social worker or their hospital's financial counselor.
Is there any research that shows palliative care is beneficial?
Yes. Research shows that palliative care and its many components are beneficial to patient and family health and well-being. A number of studies in recent years have shown that patients who have their symptoms controlled and are able to communicate their emotional needs have a better experience with their medical care. Their quality of life and physical symptoms improve.
In addition, the Institute of Medicine 2007 report Cancer Care for the Whole Patient cites many studies that show patients are less able to adhere to their treatment and manage their illness and health when physical and emotional problems are present. To view this report, go tohttp://www.iom.edu/Reports/2007/Cancer-Care-for-the-Whole-Patient-Meeting-Psychosocial-Health-Needs.aspx on the Internet.
Furthermore, patients who have serious illnesses and receive palliative care consultations have lower hospital costs than those who don't. These consultations help determine treatment priorities and, therefore, help patients avoid unnecessary tests and procedures. (For more information, go to http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_090908/page3on the Internet.)
Does NCI support palliative care research?
Yes. NCI supports a number of projects in the area of symptom management and palliative care. Clicking the following links online will launch real-time searches of NCI's list of cancer clinical trialsfor supportive and palliative care that are currently enrolling participants. The search results can be further narrowed by trial location, drug name, intervention type, and other criteria.
- Behavorial and psychological supportive care trials
- Educational and training supportive care trials
- All supportive and palliative care trials
General information about cancer clinical trials is also available on NCI's Clinical Trials Home Page at http://www.cancer.gov/clinicaltrials on the Internet.
In addition, NCI's Office of Cancer Survivorship sponsors research that addresses symptom management for patients and families who have completed treatment. For a list of funded studies, go to http://cancercontrol.cancer.gov/ocs/portfolio.asp on the Internet.
Moreover, NCI's Community Clinical Oncology Program (CCOP) sponsors a number of clinical trials that are designed to treat many cancer-related symptoms. These symptoms include nausea and vomiting, fatigue, peripheral neuropathy, pain, and sleep problems. Trials that are designed to prevent symptoms are also listed. For more information, go tohttp://prevention.cancer.gov/programs-resources/programs/ccop on the Internet. These clinical trials will be included in the search results obtained using the links above.