Navigating Care Across Settings: The Role of Caregivers
Alicia I. Arbaje, MD, MPH, is an alumna of the Robert Wood Johnson Foundation (RWJF) Harold Amos Medical Faculty Development Program and the RWJF Clinical Scholars program. She is Assistant Professor of Medicine and Associate Director of Transitional Care Research, Division of Geriatric Medicine and Gerontology, at Johns Hopkins University.
Human Capital Blog: Can you describe the typical patient you see on a daily basis?
Alicia Arbaje: As a geriatrician, I see patients who have complex chronic illness. Usually they’re over the age of 65, and even more commonly over 80. Many of my patients have more than one chronic illness, take several medications, and see multiple doctors. These are people who are interacting with the health system frequently, and they go in and out of the hospital quite a bit. Health care takes up a big portion of their life.
HCB: Do these patients have caregivers?
Arbaje: Most of them do. The ones who are fortunate do. Most often that caregiver is a daughter or a son, sometimes a spouse, neighbor, or a friend. Their responsibilities range from supervising – making sure the patient gets to an appointment or taking notes during a visit – all the way to doing things for the patient like feeding them and helping them dress. Some caregivers have an additional responsibility of making health care decisions, like what kind of treatments they get and the end of life care they receive. It’s very important that I work with their caregiver too because most of the patients aren’t able to do all the things they need to do to stay healthy on their own.
HCB: Your job and research focus on transitional care. What exactly is that? What role do caregivers play in transitional care?
Arbaje: Any time a patient moves from one health care setting or provider to another, that’s a care transition. For example, going home from the hospital or going from home to a doctor’s office. Care transitions are actually dangerous moments, and when caregivers need to be most involved in their loved one’s care.
Caregivers have a lot of challenges in transmitting information across these health care settings and figuring out what to do from one setting to another. Often times what happens is a caregiver doesn’t know what happened to the patient in the hospital, or what new appointments they have after discharge, or they aren’t familiar with new medications that have been prescribed. They may not know what tests need to be done or who to call with the results of the tests.
When I was growing up, my mother and I were the caregivers for my grandmother and we often felt that confusion, and that’s what prompted me to study this area. I wanted to focus on describing the challenges for caregivers and patients, identifying who is at risk for receiving suboptimal care, and developing best practices for delivering better care.
HCB: Are there steps a caregiver can take to be better prepared?
Arbaje: I tell caregivers to identify a health care agent – one person in the family to speak on behalf of the patient if they can’t speak for themself or can’t interface with the health care system by themself. It doesn’t mean that other family members don’t help or make decisions; it’s just easier to have one main spokesperson and decision maker. Keep a set of the patient’s personal health care records. It’s important to have a record of medical problems, medications and all the doctors they see. And most importantly, know the patient’s goals of care. What are they trying to accomplish in their health care? Do they want to be able to walk better, be less short of breath, or go shopping with the grandkids? These may be different than physician goals, like lowering blood pressure, for example. Try to have one doctor – usually a primary care doctor or geriatrician – who’s in charge of the big picture. Have a conversation with that doctor to know that they accept the role, because most physicians just focus on their one piece, not the big picture. It’s also a good idea to have one pharmacist to coordinate all medications, so they can check for drug interactions that may be missed by mail orders or using multiple pharmacies.
HCB: How can health care providers help caregivers?
Arbaje: Often times we’re not great, as a health care system, in educating the caregiver. They’re not trained to do all the things we expect them to do. Patients and caregivers assume there’s effective communication in the health care system and that we’re all talking to each other, and they don’t realize until an adverse event happens to them that the system isn’t very well coordinated. With that knowledge it’s important to empower them to become active in their care, especially when they’re moving from one setting to another.
In my role as Associate Director of Transitional Care Research, I do research on better ways to help doctors deliver safe care during care transitions. Most doctors haven’t been taught how to hand off information from one setting to another or how to communicate across health care settings. They should know who they’re sending patients to or receiving patients from. Get to know them and know how to reach each other.
It’s also important for physicians to not forget about two things: mobility and cognition. These areas are often very important to a patient in their goals of care, and they shouldn’t be areas we only think about when something is wrong. If a patient is having problems with mobility or memory – if they can’t perform activities of daily living – they won’t be able to do what you’re telling them do to.
There is help for taking care of someone with complicated illnesses and navigating the health care system. That’s what we do in geriatrics, in particular. We have advanced training in helping older patients with complicated situations. If caregivers are feeling stressed or burdened by how much care their loved one is requiring, that’s exactly when they should be seeing a geriatrician. We coordinate care and work with case managers, social workers and occupational/physical therapists to bring services into the home that will help the caregiver. Caregivers don’t have to do this by themselves.
Learn more about Dr. Arbaje’s health tips for older adults and their caregivers.