Why Care About the Caregivers?

Get Permission

The magnitude of caregiving can take a serious toll on the health and well-being of these individuals. They need help balancing the patient’s needs with their own.
— J. Nicholas Dionne-Odom, PhD, RN, ACHPN

Tweet this quote

Caregivers of patients with cancer provide invaluable health-care services, but they are an underserved and undervalued group, with many unmet needs. Early palliative care may provide important benefits to these often tireless individuals, according to J. Nicholas Dionne-Odom, PhD, RN, ACHPN, of the University of Alabama at Birmingham School of Nursing, who described the current challenges for caregivers at the 2016 Palliative Care in Oncology Symposium.1

Why This Topic Is Important

The nearly 3 million caregivers of patients with cancer are “co-deliverers and co-recipients” of health-care services, but their needs tend to go unrecognized. These individuals provide essential home and health-care services, performing tasks related to symptoms, medications, breathing treatments, ostomy and wound care, tube feedings, catheterization, and the like—tasks often performed in hospitals. Although 72% of cancer caregivers report these responsibilities, 43% say they received little to no preparation for them, revealed Dr. Dionne-Odom. These tasks are in addition to other home-care activities these persons may assume, such as shopping, cooking, and helping with activities of daily living.

Such caregiving is a full-time job. For patients with early-stage cancer, caregivers may provide more than 8 hours of care per day, for an average of 14 months. Caring for patients with advanced cancer requires an average of 11 hours a day for 18 months, totaling 76 unpaid hours of service a week. The performance of this work is valued at about $71,000 a year, per caregiver. The total value of all U.S. family caregiving has been estimated at $522 billion a year—more than the annual Medicare budget.

This magnitude of caregiving can take a serious toll on the health and well-being of these individuals. Anxiety is reported by 40% of them; depression, by up to 30%; and high financial strain, by 25% of caregivers, said Dr. Dionne-Odom.

Many Unmet Needs

Approximately 50% of cancer caregivers may never be asked about their own needs. If they were, said Dr. Dionne-Odom, they would indicate the need for practical help in many areas—navigation of the health-care system, transportation, finances, home health care, and respite care for themselves. “They need help balancing the patient’s needs with their own,” he added.

They also need cancer-specific information—about their loved one’s diagnosis, treatment, risk of disease progression, and symptoms. “They want to know when to worry. They want a sense of prognosis. They are flipping their lives upside down to try to figure out how long this crazy uphill/downhill swing will last. And they want to know what dying ‘looks like’…. Forty percent say they want help in making end-of-life decisions,” Dr. Dionne-Odom declared. Caregivers also may need guidance in “having difficult conversations” with patients. “Many would like to talk to you without the patient in the room,” he added.

Furthermore, 40% of these caregivers want help managing their own emotional and physical stress. They are coping with uncertainty, job stress, and the impact of cancer and caregiving on their relationship with the patient. They need to address their fears and sense of loss. “They need a forum on death and dying, where they can talk openly,” revealed Dr. Dionne-Odom.

Caregivers also feel invisible, and they want their sacrifices to be validated. It is important to acknowledge them as part of the health-care team.

What Does Help Look Like?

Many of these needs can be addressed through early palliative care support. The ENABLE caregiver intervention program is a care deliver model that has been shown to reduce depression and burden and may improve quality of life.2 The ENABLE model—which stands for Educate, Nurture, Advise Before Life Ends—was developed in response to the need to integrate palliative care earlier in the disease trajectory. It is a phone-based intervention led by advanced practice nurses who “coach” dyads in parallel, so patients and caregivers each have their own coach with whom they can discuss their own challenges. The program begins at diagnosis, before the common stressors of cancer and caregiving emerge. “It’s easier at this time to teach the coping skills they will need later,” explained Dr. Dionne-Odom.

There are three phone sessions of up to 1 hour in length, followed by monthly calls to reinforce prior content, and finally a bereavement call. Nurses follow a protocol that encompasses numerous issues related to the patient and the caregiver’s understanding and well-being.

The ENABLE III trial examined the impact of this program delivered early (at diagnosis) vs delayed (12 weeks or later). The investigators found that early palliative care resulted in less depression (P = .02) and lower stress burden (P = .01), with a trend toward improved quality of life for the caregiver (P = .07).2

Unfortunately, Dr. Dionne-Odom acknowledged, although this early intervention benefited caregivers, its implementation is still problematic within the formal health-care system. “We are not incentivized to take care of caregivers,” he acknowledged. ■

Disclosure: Dr. Dionne-Odom reported no potential conflicts of interest.


1. Dionne-Odom JN: Expanding endpoints in palliative care to include caregivers (the project Enable III example). 2016 Palliative Care in Oncology Symposium. General Session 2. Presented September 9, 2016.

2. Dionne-Odom JN, Azuero A, Lyons KD, et al: Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III randomized controlled trial. J Clin Oncol 33:1446-1452, 2015.