Starting Palliative Care Earlier Rather Than Later Benefits Caregivers and People With Advanced-Stage Disease

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Many people diagnosed with advanced-stage cancer have some level of pain – from mild to severe and from short episodes to longer-lasting pain. Studies have found that 56% to 75% of people with advanced-stage disease report pain as a side effect.

Pain can affect your quality of life, your mood, your ability to function and move, your appetite, and your sleep. And if you’re in pain, anxious, depressed, and sleep-deprived, it’s likely that these side effects are affecting the people that are helping to care for you. So it’s important that pain be treated. Don’t believe the common assumption that because cancer is a serious disease, some level of pain is to be expected and accepted.

Palliative care, a team-based approach in which a group of professionals – including doctors, nurses, social workers, psychiatrists, dieticians, and chaplains – focus on relieving the pain, anxiety, and stress that cancer can cause, can help control pain and improve quality of life in many situations.

Two studies have found that starting palliative care earlier rather than later in people with advanced-stage cancer offered benefits to both patients and their caregivers.

The studies, plus an editorial on the topic, were published online on March 23, 2015 by the Journal of Clinical Oncology. Read the abstracts of:

It’s important to know that palliative care is not the same as hospice care. Hospice care is reserved for people facing the end of life (typically within 6 months), and it focuses on improving quality of life rather than curing the disease. Palliative care is for anyone who needs help dealing with the physical pain, as well as the stress and anxiety, that a serious illness can cause. It is given right along with active treatment for the disease.

The ENABLE III (Educate, Nurture, Advise, Before Life Ends) study randomly assigned 207 people diagnosed with advanced-stage cancer and 122 caregivers to be part of a palliative care program that started either immediately after diagnosis or 3 months later.

About 20% of the patients in the study were diagnosed with advanced-stage breast cancer and about 16% of the caregivers were caring for someone with advanced-stage breast cancer.

More than 78% of the caregivers were female. The average age of the caregivers was 60.

For patients, the palliative care program included an in-person consultation session, coaching sessions from a nurse via a web video chat (one per week for 6 weeks), and monthly follow-up.

For caregivers, the palliative care program included three weekly telephone coaching sessions and monthly follow-up.

For patients, the researchers assessed:

  • quality of life
  • mood
  • how any symptoms were affecting the patients
  • 1-year survival
  • whether the patients had to be hospitalized, go to the emergency room, receive chemotherapy, or use other medical resources

For caregivers, the researchers assessed:

  • quality of life
  • depression
  • caregiver burden

For both groups, the researchers did the assessments at the start of the study, before palliative care had begun, and then at 6, 12, 18, and 24 weeks after the study started. After 24 weeks, the researchers did assessments every 12 weeks.

For patients, quality of life, mood, the effect of symptoms, and medical resource use were about the same no matter when they started palliative care. Still there was a difference in 1-year survival:

  • 63% of the patients who started palliative care immediately after diagnosis were alive after 1 year
  • 48% of the patients who started palliative care 3 months after diagnosis were alive after 1 year

This difference was statistically significant, which means it was likely because of the difference in palliative care starting time rather than just due to chance.

This improvement in survival when palliative care was started earlier rather than later echoes results from a study on people diagnosed with metastatic non-small-cell lung cancer. Still, the researchers aren’t sure why starting palliative care earlier improved survival. Understanding how this happens is a priority for future studies.

For the caregivers, quality of life and caregiver burden were about the same no matter when palliative care was started. Still, there was a difference in depression: the caregivers who were caring for people who started palliative care immediately after diagnosis had much lower depression scores than caregivers caring for people who started palliative care 3 months after diagnosis.

This difference in depression scores was statistically significant, which means that it was likely because of the difference in palliative care starting time rather than just due to chance.

If you’ve been diagnosed with advanced-stage breast cancer, you might want to talk to your doctor about this study and whether palliative care makes sense for you. To learn about the types of palliative care programs available in your area, you can contact your local hospitals or medical centers, or if you live in the United States, you can visit the Get Palliative Care website, which has a list of providers by state.

Once you find a program, your team will work with you and your caregivers to develop a care plan that meets your individual needs. For example, your plan might include ways to manage pain, fatigue, loss of appetite, nausea, and insomnia. Your team also can provide help and resources for dealing with emotional, practical, and spiritual concerns.

For a personal look at how palliative care can help, read Hollye Harrington Jacobs’s “Including Palliative Care as Part of Your Treatment – From the Time of Diagnosis” blog in the Breastcancer.org Community section. A pediatric and adult palliative care nurse and social worker, Jacobs was diagnosed with breast cancer in 2010.

As the editorial in the Journal of Clinical Oncology says, “If palliative care makes a difference for patients and family caregivers, and if earlier is better, why wait?”



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