Statements Highlights:

  • Adverse social factors, such as insurance status, food insecurity, lack of funds for medication and others, may lead to worse heart failure outcomes.
  • Caregiving by family and friends of people with heart failure is increasingly complicated, is progressively more challenging and takes a financial, physical and emotional toll on caregivers.

Embargoed until 4 a.m. CT / 5 a.m. ET Thursday, April 30, 2020

DALLAS, April 30, 2020 — Treatment for heart failure should take into consideration a patient’s social determinants of health – their overall living environment, socio-economic status, as well as the needs of unpaid family caregivers, according to two new scientific statements from the American Heart Association, published simultaneously today in the Association’s flagship journal Circulation.

Heart failure, which affects 6.5 million Americans, is a slow, progressive disease in which the heart does not pump blood effectively. Although there is no cure, people with heart failure can live full lives with the help of medication, lifestyle changes and social support. Caregivers are needed as the disease progresses and when an individual is no longer able to manage the activities of daily living or complex medical regimens.

The scientific statement, “Addressing Social Determinants of Health in the Care of Patients with Heart Failure,” provides an overview of scientific research that demonstrates how the county where a patient lives, personal and social factors, such as insurance status, disability status, race, ethnicity and income inequality, may impact patients from receiving state-of-the-art care for their heart failure.

“Patients who don’t have insurance coverage, enough to eat, struggle with transportation, don’t have a safe place to be physically active, can’t afford medications and/or  have less education and/or insurance coverage may have significantly poorer heart failure outcomes, compared to people who don’t experience those factors,” said Connie White-Williams, Ph.D., R.N., chair of the statement writing committee, senior director of Nursing Services and the Heart Failure Transitional Care Clinic at the University of Alabama at Birmingham Hospital. “It’s important that we ask patients about the life issues and challenges they may be facing; these issues have a direct impact on the patient’s ability to adhere to any care plan.” 

To help overcome non-medical barriers to effective care for people with heart failure, the statement suggests a best practice scenario where an interprofessional health care team works together to support the patients, their families and caregivers. This support should address the numerous life challenges that can impact health outcomes, such as the patient’s living situation, caregiver availability, ability to pay for medications and how well a patient and their caregiver understand medical information.

“Addressing social determinants of health can be resource-intensive, and many clinical practices do not have the resources nor are they set up to deal with these challenges. However, when nurses, physicians, social workers, pharmacists and mental health professionals work together, an effective plan of care can be designed to keep heart failure patients healthier and out of the hospital,” White-Williams said. “This is a model we should be working towards implementing whenever possible.”

The statement urges health care providers to routinely discuss a heart failure patient’s overall living situation to identify challenges that affect their medical care. Whenever possible, health care providers should:

  • assist patients seeking insurance coverage, financial assistance, affordable housing or employment;
  • present health information in formats tailored to meet each individual’s language, level of education and health literacy;
  • support nurse-led collaborative clinics that assist patients in becoming better stewards of their own health;
  • use medication access programs to help provide drugs out of patients’ financial reach; and
  • partner with local food banks to help provide groceries to food-insecure patients.

“Recognizing the importance of social determinants of health is a critical first step toward getting health systems engaged in developing approaches to mitigate the many adverse consequences of these factors in different settings,” said White-Williams.

A related scientific statement, “Family Caregiving for Individuals with Heart Failure” presents an overview of the challenges faced by unpaid family members who serve as caregivers for patients with heart failure.

Because heart failure is a progressive disease with alternating periods of stability,  caregiver demands change over time. Following an initial diagnosis of heart failure, caregivers may need to provide emotional support to help patients cope with their heart failure diagnosis, potential social isolation and loss of independence.

As the disease progresses, patients often need help with the activities of daily living, such as bathing, toileting, dressing, medication adherence and navigating the health care system. In advanced heart failure, caregivers are often engaged to assist with management of intensive care therapies such as mechanical circulatory support that would previously have been undertaken by health care professionals in clinical settings.

“There is a critical need for health care providers to clearly understand the demands of caregiving and how these change throughout the trajectory of heart failure. Development of tools to screen and identify caregivers who are at high risk for depression and distress are also needed,” said Lisa Kitko, Ph.D., R.N., chair of the family caregiving writing committee, and associate professor and associate dean of graduate education at the Pennsylvania State University College of Nursing in University Park, Pennsylvania.

“It is also important to assess caregiver capabilities, including their motivation to provide care; their physical, sensory, motor and cognitive ability to perform required tasks; their level of distress and depression. This includes making referrals to obtain supportive services, such as counseling and respite care on behalf of the caregiver,” said Kitko.

Health care providers should include caregivers when working with the patient to make difficult decisions, such as whether to surgically implant medical devices designed to help the heart pump more effectively or deciding when it is time to deactivate these devices and progress to palliative or hospice care. “Palliative and/or hospice care providers may also have resources to support caregivers,” said Kitko.

It is estimated that caregivers spend an average of 22 hours per week caring for patients with heart failure, and thus, they play an integral and instrumental role in providing care. Unpaid caregivers often experience loss of income, benefits and career opportunities, which can be financially burdensome to the entire family. These costs may be disproportionately borne by older adults, women and persons in underserved race/ethnic groups already at higher risk for financial insecurity.

In addition to the financial costs, significantly higher physical and psychological health risks, such as social isolation and disruption of outside relationships, have been observed among people caring for family members with chronic illnesses such as heart failure.

“In our current health care system, there is a lack of incentives for clinicians to evaluate caregiver needs and offer direct support.

The largest barrier is the lack of payment and reimbursement mechanisms that would allow clinicians to provide direct support to caregivers,” said Kitko. “Other barriers include a lack of systematic mechanisms to identify caregivers and make referrals for those with the highest distress and unmet needs; medical record systems that can accommodate caregiver assessment, intervention and tracking; limited funding for community-based agencies that provide caregiver services; minimal time for clinical interactions with patients, which limits the ability address caregiver concerns or distress; and lack of clear guidelines for caregiver support provision.”

The scientific statement, “Addressing Social Determinants of Health in the Care of Patients with Heart Failure,” was written on behalf of the American Heart Association’s Council on Cardiovascular and Stroke Nursing; Council on Clinical Cardiology; and Council on Epidemiology and Prevention. Co-authors are Laura P. Rossi, Ph.D., vice chair; Vera A. Bittner, M.D., M.S.P.H.; Andrea Driscoll, Ph.D., N.P.; Raegan W. Durant, M.D., M.P.H.; Bradi B. Granger, Ph.D., R.N.; Lucinda J. Graven, Ph.D., M.S.N.; Lisa Kitko, Ph.D., R.N.; Kim Newlin, A.N.P., C.N.S.; Maria Shirey, Ph.D., M.B.A., R.N.

The scientific statement “Family Caregiving for Individuals with Heart Failure” was written on behalf of the American Heart Association’s Council on Cardiovascular and Stroke Nursing; Council on Quality of Care and Outcomes Research; Council on Clinical Cardiology; and Council on Lifestyle and Cardiometabolic Health. Co-authors are Colleen K. McIlvennan, D.N.P., A.N.P., vice chair; Julie T. Bidwell, Ph.D., R.N.; J. Nicholas Dionne-Odom, Ph.D., R.N.; Shannon M. Dunlay, M.D., M.S.; Lisa M. Lewis, Ph.D., R.N.; Ginny Meadows, M.S.H.I., R.N.-B.C.; Elisabeth L.P. Sattler, Ph.D., R.Ph.; Richard Schulz, Ph.D.; and Anna Strömberg, Ph.D.

Author disclosures are in the manuscripts.

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