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Starting Palliative Care Earlier for People With Advanced-Stage Cancer Benefits Caregivers

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Many people diagnosed with advanced-stage cancer have some level of pain – from mild to severe, 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.

Besides quality of life, pain also can affect your ability to function and move, your appetite, your sleep, and your mood – all of which can affect the people who are caring 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, dietitians, and chaplains -- focus on relieving the pain, anxiety, and stress that cancer can cause, can help control pain in many situations.

A study has found that starting palliative care earlier rather than later in people with advanced-stage cancer helped the cancer patients’ caregivers. The caregivers had lower rates of depression and better quality of life.

The research was presented on May 31, 2014 at the 2014 American Society of Clinical Oncology Annual Meeting. Read the abstract of “Benefits of immediate versus delayed palliative care to informal family caregivers of persons with advanced cancer: Outcomes from the ENABLE III randomized clinical trial.”

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.

The palliative care program included counseling and advice given over the phone.

The researchers assessed quality of life, depression, and caregiver burden five times during the study:

  • at the start of the study, before palliative care had begun
  • 6 weeks after the study started
  • 12 weeks after the study started
  • 18 weeks after the study started
  • 24 weeks after the study started

The results showed that compared to caregivers with patients who didn’t start palliative care until 3 months after diagnosis, caregivers with patients that started palliative care immediately after being diagnosed had better quality of life and much less depression. The benefits of starting palliative care early lasted for at least 2 years.

These differences in quality of life and depression were significant, which means they were because of the difference in palliative care starting time and not just due to chance.

While this study only found benefits for caregivers when palliative care was started early, other studies have found that earlier palliative care led to better survival among cancer patients.

If you’ve been diagnosed with advanced-stage cancer, you might want to talk to your doctor about this study and whether palliative care makes sense for you. To learn what types of palliative care programs are available in your area, you also can contact your local hospitals or medical centers or 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 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 Community section. A pediatric and adult palliative care nurse and social worker, Jacobs was diagnosed with breast cancer in 2010.

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