Our health care system fails family caregivers

Our health care system fails family caregivers

I knew something was wrong when my husband, an avid tennis player, started taking afternoon naps. Scans showed a shadow on his lung that turned out to be stage 3 lung cancer.


A few days after a terrific surgeon removed part of my husband’s lung, the hospital discharged him. That evening at home, my husband began gasping. My blood ran cold when he told me that he thought he was suffocating.


My husband begged me not to send him back to the hospital. So I called our primary care physician. Because he is a friend, he rushed over to examine my husband and discovered that an incorrect dosage of medication had triggered the breathing problems.


We were lucky that my husband’s doctor would make a house call. Few families would have access to that type of personal care — and throughout my husband’s health struggles, I recognized how lucky we were to have the resources we did. But in most instances, a patient like my husband would be in an ambulance, headed back to the hospital for readmission.


As I learned on that frightening night and on many other occasions, our health care system repeatedly fails family caregivers. This failure is most acute for those who care for patients recently discharged from a hospital.


This has to change. As both Congress and the state consider health care reforms, they should create programs that support those who care for loved ones after hospital discharge.


The average hospital stay has fallen from seven days in 1993 to 5.4 days in 2017. Patients now leave the hospital quicker and sicker than in the past. At home, the burden of patient care falls on family caregivers.


Caring for a patient freshly discharged from the hospital can be a harrowing experience. Family and friends are asked to take on roles that until recently had been performed by health care professionals, such as administering medications and changing dressings. Yet many family caregivers lack the training, physical strength, health care literacy, transportation access, and financial resources to care effectively for recuperating loved ones.


When my husband had hip surgery last year, his surgeon scheduled a follow-up visit shortly after discharge. But I couldn’t get him into the car.


Hospitals can support family caregivers by implementing comprehensive discharge plans that utilize tools such as checklists, written instructions, 24-hour access to health care providers, and specific guidelines on what to do if adverse events occur, especially after hours.


Unfortunately, too few hospitals offer discharge plans that fully prepare family caregivers. “There is a surprising lack of consistency in both the process and quality of discharge planning across the health care system,” reports the Family Caregiver Alliance.


Supporting family caregivers isn’t just the right thing to do. It can also save money. Mistakes in home care can lead to hospital readmissions, which are associated with yearly costs of about $41.3 billion as well as reimbursement penalties imposed on hospitals by Medicare as a way to reduce readmissions. About 14 percent of people discharged from hospitals are readmitted within 30 days.


Certainly, patients should go back to the hospital if they need additional care. But some readmissions could be prevented by providing better support and education to the people who care for discharged patients.


We spend billions of dollars on hospital buildings and medical research — as we should. Some of those resources should be spent supporting family caregivers.


Policy makers who think our health care system can’t afford to allocate resources to the needs of family caregivers are wrong. The truth is, we can’t afford not to.



This article, authored by Ellen Bender, was first published in the Boston Globe on April 25, 2019.