Palliative care is an important part of cancer care. For someone with cancer, the goals of palliative care include treating symptoms, managing emotional and social needs, and addressing spiritual and practical concerns.
While the process of palliative care begins with each patient’s health care team, caregivers are responsible for many of the day-to-day tasks, such as giving medications, providing transportation, assisting with daily activities, offering emotional support, helping with finances, and talking with doctors. This is the reason that providing support for caregivers is another important goal of palliative care.
This aspect of palliative care is highlighted in the research released in advance of the 2016 Palliative Care in Oncology Symposium, which brings together experts to share strategies and methods for integrating palliative care into cancer care at every point in the patient’s care.
Addressing the health and well-being of caregivers
In one study, researchers found that cancer caregivers may encounter more unique challenges than other caregivers. For this study, researchers looked at information from more than 1,200 caregivers in the United States. They found the following differences between those caring for someone with cancer and those caring for someone with another condition.
Cancer caregivers were more likely to be communicating with health care professionals: 62% needed to advocate on behalf of the patient, compared with 49% of other caregivers.
Cancer caregivers spent about 50% more hours per week providing care than other caregivers.
Cancer caregivers were twice as likely to need more help and information with making end-of-life decisions
According to study researcher Erin Kent, PhD, MS, the increased intensity of cancer caregiving may be due, in part, to the nature of cancer care, which requires short, intense periods of active treatment. She also noted that such intensity is linked with increased caregiver stress and depression.
“Caregiving can be extremely stressful and demanding – physically, emotionally and financially. The data show we need to do a better job of supporting these individuals as their well-being is essential to the patient’s quality of life and outcomes.”
—Study researcher Erin Kent, PhD, MS
A second highlighted study took a closer look at stress and depression in cancer caregivers. This study used information from a multi-state survey of 294 people caring for a family member with cancer to examine self-care behaviors and quality of life. Researchers found that family caregivers can spend more than 8 hours each day providing care. And, as this time increases, caregivers spend less time on self-care behaviors, such as sleep and exercise. They also found that nearly a quarter to a third of those caring for a family member with advanced cancer experience high levels of depression and anxiety.
“Caregivers and patients are faced with an enormous physical and emotional toll when dealing with advanced cancer. When they put their own health and well-being on the back burner, it can affect their care to the patient. We hope our research rallies the oncology palliative care communities to develop assessment tools and services that support caregivers. These efforts would help ensure that caregivers are supported and healthy when they take on the important role of caring for an individual with advanced cancer.”
—lead author J. Nicholas Dionne-Odom, PhD, RN
What can caregivers do?
If you are a caregiver, the following suggestions can help keep you from feeling overwhelmed or burned out:
Recognize the signs of stress, anxiety, and depression
Ask for help
Make time for yourself
Learn about the Family and Medical Leave Act (FMLA)
Be kind to yourself and take care of your own health too
Learn more about caring for a loved one.
Benefits of early palliative care for patients and the barriers they may face
A study on the effect of palliative care for patients found that starting it soon after a diagnosis of certain metastatic cancers increases a patient’s coping abilities and quality of life. This study included 350 patients who had been recently diagnosed with incurable lung cancer or non-colorectal gastrointestinal cancer. As part of the study, patients received either palliative care included with standard cancer care soon after diagnosis or only standard cancer care.
Then, researchers assessed quality of life, mood, and coping abilities at 12 and 24 weeks. To assess coping abilities, researchers used a tool called Brief COPE that examines how people respond to stress by examining each patient’s acceptance of the diagnosis, positive reframing, use of emotional support, and acceptance. Researchers found that those who received palliative care reported a higher quality of life and lower levels of depression at 24 weeks, but not at 12 weeks. In addition, 30% of patients receiving palliative care discussed end-of-life preferences, compared with 14% of those receiving only standard cancer care.
“Our research looked at a new measure of a patient’s ability to cope effectively with their diagnosis. What we found was the patients who received early palliative care were more likely to use adaptive coping strategies – meaning they were more likely to take some action to make their lives better as well as to accept their diagnosis. Palliative care is a key ingredient to improving quality of life, which is important to both patients and their families.”
—lead author Joseph Andrew Greer, PhD
A team of researchers from Duke University used a “mystery shopper” approach to uncover some of the barriers patients may face in receiving access to palliative care. As part of the study, researchers placed 160 calls to 40 major cancer centers asking about palliative and supportive care needs for a family member. In about one-third of calls, they had difficulty getting information about palliative care services.
When those answering the calls responded “yes” to questions about the availability of palliative care services, they were most likely to refer the researchers to patient navigation and genetic assessment services. In nearly 10% of calls, those answering gave a response other than “yes.” The answers varied and included responses such as:
Palliative care was for end-of-life care only
No physicians specialized in symptom management
A medical record review would be needed first
Overall, only 37% of callers were told all 7 supportive care services available.
“Cancer centers have worked very hard to establish palliative and supportive services to better meet the needs of the whole patient. It’s sobering to hear that such services are not readily accessible at many centers. However, it provides an opportunity for cancer centers to empower their front-line staff, as well as the oncology care team, through education and training so that the entire enterprise has a common understanding of palliative care and how to access it.”
—lead author Kathryn Hutchins
What can patients do?
When you are diagnosed with cancer and when you are discussing treatment options, talk with your immediate health care team about palliative care and support services for coping with the diagnosis. Consider asking the following questions:
What palliative care services are available to me?
Will it be a part of my cancer care and when?
Where can I find support in coping with this diagnosis?
How can I find out more information?