The
experiences of caregivers who support aging parents, grandparents, spouses, and others confirm frustration working with medical providers. If you’ve been a caregiver for a person with multiple health conditions, you know that care coordination efforts can be complicated.
You’ll find tips to make care coordination easier in this article.
Let’s start with the idea of care coordination, what it means, and who performs this role.
- Care coordination can also be called care or case management, or care navigation.
- In families, this role usually falls on the primary caregiver, who knows the most about the person who needs care.
- Care coordinators or care managers in healthcare systems might be called nurses, social workers, discharge planners, care coordinators, care managers, or care navigators.
Working with medical providers involves care coordination. The healthcare system prefers to use the word patient for persons they interact with regardless of healthcare status.
Depending on the extent of your involvement in the healthcare system, you may or may not be aware of Medicare’s chronic care coordination benefit. This benefit can benefit caregivers and adults over the age of 65.
Medicare’s Chronic Care Coordination Benefit
You may hear the term chronic care coordination used in relation to Medicare patients. There is a
Chronic Care Management Toolkit that offers 20 minutes a month of care coordination services outside of an in-person office visit, plus other benefits that may be helpful, so be sure to take a look at this document and ask your doctor about the benefit.
Health Conditions Can Increase the Number of Medical Providers Involved
The more health conditions a loved one has, the greater likelihood of increased involvement with medical providers. For example, a parent who has a heart condition, depression, arthritis, and COPD may see a cardiologist, a psychiatrist or psychologist, a rheumatologist, and a pulmonologist in addition to a primary care physician or
geriatrician.
A gap in awareness of multiple physician involvement can be dangerous if all specialists prescribe medication and treat health concerns and no one in the middle coordinating information sharing. The concern is that the family caregiver or the patient, due to a lack of experience working with medical providers, may not know they should be coordinating care, informing, or asking questions.
Care Coordination Across Care Teams
Additionally, a care coordinator or care manager’s role is to ensure the entire “
“care team”—another medical term that means everyone medically and socially— is involved. There are circumstances when the “clinical” or medical side of healthcare does not realize community-based organizations or “social care” are also involved.
How can healthcare providers lack awareness of other providers? One example.
- A caregiver or patient may work with an organization that provides transportation to medical appointments.
- So when a doctor says to the patient, I want to see you in three weeks, the patient or their caregiver has to coordinate this appointment with the transportation company—who sometimes may not be 100% reliable. Sometimes, the patient may be late or miss an appointment.
- If the doctor’s office doesn’t know that a patient uses a transportation company, they may view the patient as someone who makes appointments and then doesn’t show up—not knowing that the person has to rely on a transportation service.
- So, for a family caregiver, working with medical providers means identifying the people on the care team and letting everyone know who else is involved, including transportation and other social care services.
Patient and Caregiver Frustrations
Let’s talk about frustrations experienced by caregivers and patients for a moment so that you can see how all of this comes together so you can identify potential problems before they happen. When working with medical providers, it’s essential to understand care team members’ roles and motivations.
Frustrations experienced by caregivers and patients include:
- Accessing services
- Long wait times for appointments or treatments
- Poor communication, no communication, or delayed communication
- A general lack of understanding about a care plan
- Too many people involved.
A care plan is another medical term for the process a physician or healthcare provider uses to treat specific conditions. All medical providers, including home care services, use care plans.
For example, a healthcare company sends a physical, speech, or occupational therapist to a patient’s home to encourage walking and physical recovery after hip surgery. This company will create a care plan for the patient.
Caregiver and Patient Participation
In all places where care is received or provided, expectations exist about patient participation. Working with an increasing number of medical providers can be intimidating for patients and caregivers—especially if it is unclear who is responsible for following through and how this happens.
Imagine having five physicians giving a patient instructions without one individual ensuring that the physicians are working with and communicating with each other.
This
responsibility for communication mainly falls on the family caregiver or the patient. However, there can be gaps even when the caregiver encourages communication.
If physicians are not on the same electronic health records system, they may be unable to share information. So, working with medical providers may require extra effort from patients and caregivers—for example, printing documents and providing them to multiple medical offices.
Use of Electronic Health Records and Portals
The use of electronic health records and health portals can add difficulty for older adults who may not be computer savvy or want to communicate via electronic methods. While virtual appointments can be a plus, learning to use the platforms can be initially challenging.
This is all the more reason to have another person, like a family caregiver, to assist or be involved. While electronic health records—the health system calls these by an acronym EHR—can be beneficial, they also can be problematic if inaccurate information exists in the record and no one takes responsibility for correcting it.
For example:
- EHRs may have information about appointments, treatments, or blood tests due by a specific date.
- Sometimes, the dates for vaccinations or procedures are entered automatically and are inaccurate.
- So, there may be a date for a mammogram or another screening the patient completed.
- If no one manually updates the record, the record makes it appear that the patient is overdue and not following through with recommended care.
Inaccurate records can become problematic if the primary care physician’s office or no one else, but the patient and caregiver keep track of this information. When working with medical providers, asking WHO will update this information is important.
Similar to patients and their caregivers having learning gaps with technology, medical staff must also learn how to use electronic health records and similar systems. Using multiple computer systems is a significant concern of healthcare providers due to limited time with patients.
Healthcare Silos Prevent Information Sharing
As the patient and caregiver, it’s imperative to ensure that medication and supplement lists that include vitamins are updated. There can be adverse interactions between medications, vitamins, and supplements.
When in doubt, it’s okay to ask, “Are you the person responsible for helping me with care coordination, or can you update my medical record?”
Caregivers and patients may work with more than one care manager or care coordinator because they work in what the healthcare system calls “silos.” You can think of a silo as a type of business.
A primary care office can be one silo, in addition to a nursing home, home health care company, or a pharmacy. In addition to being different types of businesses, their electronic medical records may not share information.
This means providers cannot automatically update or add information to share across computer systems. So, when working with medical providers, you may get tired of answering the same questions and providing the same information.
This sharing, called interoperability, is another healthcare term. Healthcare sharing or interoperability has been a work in progress in the healthcare system for many years.
There’s still a lot of work to do before all involved can or will agree to share records. So here is an example of how this complicates care for caregivers and patients.
Silos exist because providers are paid or reimbursed based on different goals. Motivation for a discharge planner includes:
- Discharging patients as quickly as possible to a rehab center, nursing home, or private home so that rooms are available for incoming patients.
- Minimizing the number of patients who return to the hospital within 30 days of discharge. Because if patients return, under some conditions, the hospital can be financially penalized.
- Transferring follow-up activities to a rehab center, nursing home, or the patient and their caregiver.
The Accuracy of Healthcare Record Keeping
When patients return home, it’s very important for them to see their primary care physician within a few days of discharge. So the hospital discharge planner or someone from the doctor’s primary care office—especially if they are part of a hospital system that can be financially penalized—may call the day after return to the home to ask if you have scheduled a primary care physician appointment or to help you schedule the appointment.
As the caregiver or patient, you may think, “We’ve had enough of hospitals and medical care. Why do we need to go see the doctor?”
The answer is to ensure communication of information from the hospital to your doctor and to ensure the accuracy of recommendations. Your doctor may not have access to your hospital records.
The physicians who see you in the hospital are called hospitalists, or they may be one of your physician specialists—like a surgeon if the purpose of the hospital stay was surgery. Physicians who see you in the hospital are not usually your primary care physician or geriatrician.
There can be medications that were added or discontinued during your hospital stay. Reviewing this information with your physician is vital if a medication was added or discontinued that conflicts with other information the primary care physician knows.
So as you can see, everyone on your healthcare team may have a different area of focus which is why the term silo is used. As a caregiver or a patient, the best thing you can do is learn who is involved in your care and who is the best person to help you with each specific need.
Caregiver and Patient Advocacy Is Critical
If there is any confusion, don’t hesitate to ask. If one specialist’s recommendations contradict another’s. Ask them to talk with each other.
In other situations, there may be unnecessary duplication of effort. For example, one doctor may want a particular blood test, while you know another doctor orders different tests or you’ve already had that test.
When working with medical providers, to save time and multiple appointments, determine if all blood work requests from multiple doctors can be combined into one appointment. There is no reason this can’t happen. However, it may be up to you as the caregiver or the patient to gather all the orders and take them to the location of the blood draw appointment.
Here’s one more example of
why advocacy is important.
Your loved one experiences back pain, but the medications have side effects that they don’t like. For example, the medicine makes them tired, dizzy, or nauseated. So they don’t take the medications and instead live in pain.
The next time they see the doctor, the doctor asks about the pain, only to find out that the patient stopped taking the medication. This is not a good solution.
When working with medical providers, be persistent in communication. If possible, communicate concerns through the online healthcare portal so the information and requests are on the record.
It’s up to you to ensure you and your loved ones receive the care they deserve, especially when care needs increase, and you are working with multiple medical providers. Additionally, use care managers and care coordinators to help you as much as possible to avoid burnout and exhaustion.
While caregivers are often the last ones to seek help, healthcare staff who can assist with care coordination can streamline processes and reduce stress. Care coordinators and care managers can be your best advocates.
Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes, in Pamela’s Online Program.
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