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Palliative Care for Caregivers: Implementing Caregiver Support Programs

TON - November 2016, Vol 9, No 6 - Palliative Care
Chase Doyle

San Francisco, CA—At the 2016 Palliative Care in Oncology Symposium, the message was clear and emphatic: caregivers should be viewed as both co-deliverers and co-recipients of healthcare services.

“Despite providing essential home and healthcare services, cancer caregivers are underserved and undervalued while facing a multitude of unmet needs,” said J. Nicholas Dionne-Odom, PhD, RN, ACHPN, Cancer Prevention and Control Training Program, University of Alabama at Birmingham School of Nursing. “There are 2.8 million cancer caregivers performing a variety of invaluable and time-consuming tasks that can take a marked toll on their physical and mental health.”

These tasks are related to symptoms, medications, breathing treatments, ostomy, wound care, gastric-­tube feeding, and catheterizations, among others. Although these nursing services are often performed in hospitals, a survey conducted by the National Alliance for Caregiving in partnership with AARP found that 72% of cancer caregivers deliver these services at home, despite a lack of preparation or training.

In addition, caregivers are often responsible for appointment coordination, transportation, home maintenance, meal preparation, and activities of daily living. An 11-state survey showed that advanced cancer caregivers work, on average, up to 76 hours weekly for 18 months, he said.

“It’s estimated that advanced cancer caregiving is worth $71,000 a year,” said Dr Dionne-Odom. “The idea that this unpaid work could be replaced with paid professionals is unrealistic.”

When it comes to patients with cancer, “Caregivers need practical help with home-based activities of daily living, navigating healthcare systems, transportation, finances, balancing the needs of patients with their own, and maintaining their own health. They also need information on cancer diagnosis, progression, prognosis, management of symptoms and medications. Finally, caregivers need help making end-of-life decisions and managing their own emotional and physical stress,” he said.

Integrating caregiver support into formal healthcare systems remains a huge challenge, because the system is not incentivized to take care of caregivers. Simple steps, however, can be taken to provide psychosocial support. “Simply acknowledging their sacrifice and recognizing them as a member of the healthcare team can go a long way towards making them feel included,” he said.

ENABLE III Trial: Cancer Caregivers

In the ENABLE III trial, which took place between October 2010 and September 2013, cancer caregivers were randomly assigned to receive 3 structured weekly telephone coaching sessions, monthly follow-up, and a bereavement call, either early after enrollment or 3 months later.

In the first session, family caregivers were asked to talk about themselves and their experience as caregivers.

In the second session, self-care and symptom management (for their patients and themselves) were discussed along with dealing with depression, grief, and loss.

In the third phone session, the focus was on communication and decision-making—developing a support network, making medical decisions, and implementing advanced care planning.

Caregivers in the early group had lower depressed mood and lower stress burden at 3 months, with a trend toward improved quality of life. These results, he said, confirm what has been anecdotally observed for years: to maximize benefits, palliative care for caregivers should be initiated as early as possible.

“If [they] wait to intervene with family caregivers when they’re in the ICU [intensive care unit], they are already exhausted and have been down many stressful paths. On the other hand, if we can do this at diagnosis and catch them when they’re still relatively healthy and calm, then it’s much easier to teach the coping skills they will need later,” Dr Dionne-Odom concluded.

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Last modified: April 27, 2020