By JAY BARUCH
FEBRUARY 12, 2018
Mrs. G has been in the emergency department for hours. An exhaustive workup didn’t find any serious cause for her weakness, the reason her daughter Rosa (not her real name) brought her in. I tell them that Mrs. G seems to be a bit dehydrated and, after we give her some intravenous fluids, she can go home. Mrs. G’s eyes light up. Her daughter’s go blank. Rosa dabs at a tear rolling down her cheek. I sense that she expected, maybe even hoped, that her mother would need to stay in the hospital, even just for the night.
A brick of paperwork that Rosa gave me when they arrived chronicles what has become of Mrs. G’s life — enduring the unforgiving fates of congestive heart failure, diabetes, high blood pressure, mild kidney failure, osteoporosis, depression, and early dementia. It also details her last hospital admission for pneumonia, a long stay that left her with an open ulcer on the skin over her tailbone that, months later, still hasn’t healed. Rosa was worried that another pneumonia was brewing.
“I’d like to see your mom drink something,” I tell Rosa, then catch myself. I was disrespecting Mrs. G by talking around her and directing the conversation to her daughter. After decades of doctoring, I should know better. That an older patient sits in silence doesn’t mean she hasn’t a strong voice in her own care; that she carries a diagnosis of dementia doesn’t necessarily imply she can’t comprehend what I’m saying.
“Can you try to drink something?” I ask Mrs. G, pointing to a Styrofoam cup half-filled with ice and water.
Rosa folds a sheet and slips it behind her mother’s back as a pillow. “Drink up,” she says. “Did you hear what the doctor said? You have to drink more.”
Her mother rolls her eyes.
“She’s stubborn,” Rosa says, smiling. “I try everything to get her to drink. Water. Tea. Juice.”
Her brothers and sisters don’t understand how hard it is, Rosa says, and they’re not around much to find out. This time her smile can’t disguise the strain.
I realize that the most acutely distressed person in the exam room isn’t Mrs. G but her daughter, her caregiver.
In the emergency department, the patient receives the bulk of the attention. Physicians spend far less energy probing the caregiver’s experience. As common courtesy, I try to introduce myself to everyone when I enter the exam room. Yet this recognition of caregivers’ presence isn’t necessarily recognition of the challenges they face, and often doesn’t lead to a discussion of the burdens of such work.
Caregivers are individuals, usually family members, who regularly look after one or more sick, frail, or disabled individuals. Caregiving tasks can be all-consuming. They include feeding, dressing, grooming, assistance with toiletry, bathing, shopping, cooking, housekeeping, and doing laundry. The work can extend to transportation, handling financial matters, arranging doctor visits, and sometimes making the decision to come to the emergency department.
Even when undertaken from a wellspring of generosity and love, caregiving can be a source of burnout, with physical, emotional, and psychological exhaustion. Caregiver burnout occurs when individuals don’t get the help they need, try to handle too much, or take on things they aren’t capable of doing. When caregivers do carve out time for themselves, they may feel guilty about it, resulting in a paradoxical worsening of their burnout.
The psychological distress and physical demands of caregiving are reflected in a wide range of biological responses that include slower wound healing, elevated blood pressure, and an impaired immune response. These can take a toll, leading to an overall increase in caregiver mortality.
Caregivers often do their noble work in the shadows. It’s embarrassing to admit this, but it wasn’t until I asked Rosa what she was anxious about that I appreciated how worn down she looked with her uncombed hair, lack of makeup, loose sweatshirt, baggy sweatpants, and Crocs.
Despite the negative test results, Rosa still worries that the slight fever her mother had spiked earlier in the day might point to something serious, like pneumonia. “Wouldn’t it be safer to keep her in the hospital?” she asks. Moving her mother to and from the car is a chore. She doesn’t want to get home only to have to bring her back to the hospital.
I feel myself taking a different look at Mrs. G’s daughter. Is she hoping to leverage her mother’s symptoms for a break, a soft version of what has been called granny dumping?
I was introduced to that concept during the first Thanksgiving of my emergency medicine residency. Families drop off elderly relatives in the emergency department with a packed bag and nebulous complaints and then take off, expecting the hospital to care for them. Other judgement-filled euphemisms include positive tail-light sign and packed suitcase syndrome. It isn’t unique to the U.S.
Over the course of my training, I became angry with these families, especially when they didn’t stick around to talk to the physicians. Eventually, though, experience taught me that this problem is typically the result of systems that don’t provide enough resources for caregivers who often face daunting tasks. These obligations are equivalent to unpaid full-time jobs. Could anyone blame them for seeking a breather?
Caring for caregivers can be difficult, too. It’s not easy for them to think of their own troubles when they’ve been so focused on someone else’s needs. I once cared for a middle-aged woman with signs of a heart attack, including a worrisome electrocardiogram. She refused to stay in the hospital for further evaluation because she was caring for her mother with dementia.
I turn so I’m addressing both Mrs. G and Rosa. “I’d like to consult a social worker,” I say.
In situations like these, a social worker can be an essential member of the treatment team. She or he can explore whether the patient is eligible for services and, if so, help arrange them. I think that might lighten Rosa’s load. But she quickly refuses. She has everything under control, she says, adding that they can’t afford extra services.
Actually, it might be in Mrs. G’s best interests for Rosa to agree to get some caregiving help. One study suggests that Medicare patients who are looked after by caregivers who score high for fatigue and low for health status and depression incur higher health care costs, including more emergency department visits.
An estimated 14.7 million older adults receive assistance with daily activities from spouse and family caregivers. Only one-quarter of caregivers take advantage of supportive services, possibly because many of them may not perceive themselves as caregivers, a term with professional connotations.
In the emergency department, caregivers are more than the other people in the room. Their assistance can be a treasure trove of information and insight when the patient has trouble communicating with the medical staff. But when the strain of caregiving reveals itself, clinicians like me have a responsibility to pursue those worrisome cracks.
Assessing a caregiver’s roles, capacities, vulnerabilities, and strengths, when done well, is a nonjudgmental process conducted by expert staff members who have the time and training to appreciate these often complex situations as well as a deep, practical understanding of possible solutions. These experts are typically social workers or nurses, but there are valuable assessment tools that serve as useful guides for busy health professionals in emergency departments and elsewhere.
Implementing these tools in health care practice is an intervention strategy that one expert believes could be done today.
Caring for patients sometimes requires that we reach into the shadows and shine a light on their caregivers. Even if emergency clinicians lack the time and resources to fully implement these assessment strategies, at the very least we can recognize that caregiving is difficult and that seeking help or a break isn’t a sign of weakness or failure. We must also remember that overwhelmed caregivers are often reluctant to accept assistance.
Rosa doesn’t want to discuss the caregiving challenges she’s experiencing with me or a social worker. I wonder about her stiff resolve, whether my offer of assistance also invites judgement, that her siblings might consider the need for outside help to be a failure on her part.
So I do what I can. I make a point of saying she is doing a great job with her mother. I home in on the pressure sore in her mother’s lower back. It is clean and healing, at least as well as those things heal. “That’s a tough wound to care for,” I say. “Really tough.”
It looks for a second like Rosa will crumble into her seat. “It is,” she says. “Thank you for saying that.”
Jay Baruch, M.D., is associate professor of emergency medicine and director of the Medical Humanities and Bioethics Scholarly Concentration at the Warren Alpert Medical School of Brown University in Providence, R.I. Some of the details of this case have been changed.