What’s Norma Rae Got to Do with It?

Think about what caregivers do to support the people they love:  they spend hours scheduling and attending medical appointments.  They dish out 20 percent of their annual income for out of pocket costs.  They bathe and wipe the bodies of their loved ones.  And, they navigate the protocols, rules and bureaucratic dysfunctionality of health insurers, hospitals, and doctor’s waiting rooms.  One wonders why they don’t all rise up and rail against the health care system the way Sally Field protested against the cotton mill bosses in the film Norma Rae.  After all, caregivers too are underpaid, overworked, and often suffer unhealthy consequences.

The United States is projected to age significantly during the next few decades.   By 2030, 20 percent of our population will be 65 and over, according to the U.S. Census Bureau’s Population Projections Branch. That means many more caregivers will be needed to support the swell of people with health issues associated with aging.

The problem is, the caregiver role is not sustainable.  Caregivers are plate spinners, keeping everything in the air, moving from plate to plate so that one doesn’t drop and break when the patient experiences another health crisis. Caregivers are saving our society and our government billions of dollars annually through their selfless acts of volunteerism. In 2013, AARP estimated that it would cost society $470 billion for the 37 billion hours of care that 40 million caregivers gave to their parents, spouses, partners and other adult loved ones that year. This amount surpassed total Medicaid spending in 2013.  Think about it.  Free, non-unionized labor.  Can we say Norma Rae?

It’s time now to provide family caregivers the recognition and support they need as extensions and allies of the healthcare team.  Caregivers make medical decisions with patients and physicians.  They search for hours to investigate new treatment options and to better understand disease.  They sometimes point out potential diagnoses that medical professionals would overlook.  And they often take on making beds and cleaning bathrooms when the nursing home or assisted living facility is short-staffed.

The Family Caregiver Alliance published a Caregiver Bill of Rights in 2014.  One of its tenets is “to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.”

There are laudable efforts underway to support caregivers; some have been around for a long time, others are more recent. Under the Family and Medical Leave Act, eligible workers are entitled to unpaid leave for up to 12 weeks per year without losing job security or health benefits, to care for a spouse, child or parent who has a serious health condition.

In January 2018, the President signed a new law, the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act — creating a Department of Health and Human Services (HHS) advisory council charged with forging a strategy to support family caregivers. The plan, to be developed within 18 months, will address financial and workplace issues, respite care and other ways to support caregivers.

But more needs to be done by the entire health care system — health insurers, provider organizations, long term care facilities and pharmaceutical companies — to truly recognize the caregiver as a key decision-maker in care with proper support, education and knowledge sharing.

There are simple things that would validate the caregiver’s role as an ally in care:

  • With the patient’s consent, include the caregiver’s name on the doctor’s office intake forms so that caregivers are introduced and integrated into the physician/patient relationship from the start.
  • Have more widely available disease-specific videos, materials and training for caregivers so they can gain confidence in their caregiver role more quickly and reduce the stress of learning on the job.
  • Companies investigating new drugs should educate the caregiver on the clinical trial process and involve them when developing clinical trial protocols since caregivers often provide logistical and moral support to the patient who is a trial participant.
  • Health insurers could ease the role of the caregiver during the hospital to home transition and avoid re-hospitalizations by ensuring that caregivers truly understand available resources that are covered and those that are not.
  • Physicians could add one more chair in their examination room so that caregivers aren’t forced to stand in a corner during a patient visit and are treated more as a care partner.
  • Medical Proxy rules could be made more flexible so that more than one proxy is permitted to get patient information, with the patient’s consent. Families are often juggling multiple roles and this would lessen the need for one person to be the sole information sharer and decision-maker.

Organizations that focus on caregivers and patients are doing incredibly valuable policy and research work to better understand the caregiver/patient dynamic and are also advocating for change.  Rx4good recently partnered with 70 nonprofit organizations including the American Heart Association, American Cancer Society, CancerCare, Caregiver Action Network, Epilepsy Foundation, Global Genes, National Alliance for Caregiving, National Stroke Association, National Alliance on Mental Illness (see list), and many more organizations to conduct research to understand the medical decision-making role of caregivers and how caregiving differs from disease to disease.  The results will be presented at the annual Drug Information Association meeting in June in Boston.

By better understanding the role of the caregiver in medical decision-making, we can continue to better support and involve them in care, easing their burden and improving the health outcomes of the ones they love and support.

Norma Rae said: “I’m stayin’ right where I am. It’s gonna take you and the police department and the fire department and the National Guard to get me outta here,” demonstrating that it only takes one very persuasive and persistent person to make change begin.  There are 40 million caregivers out there, and it’s time we were heard.


Let your voice be heard! Take the Caregiver Factor survey, then share it with your fellow caregivers today.