Caregivers want technology that can help facilitate the care of loved ones. Not only can physicians provide those tools, they also can benefit from them.
By Pamela Lewis Dolan, amednews staff. Posted Dec. 5, 2011.
Pulmonologist Scott Manaker, MD, PhD, said that when elderly patients come for their first visits and are accompanied by family members, he begins the conversations with the relatives by determining when and how he can share information about the patients’ health.
With more than 29% of the U.S. population acting as a caregiver to someone else, chances are that physicians eventually will be faced, as Dr. Manaker is, with questions about how they can work with caregivers to ensure the health of the person receiving care.
The majority of caregivers spend an average of 20 hours per week providing care, in addition to holding down a full-time job. To help make things more efficient, many are turning to technology that not only will supplement the care they are providing in person, but also will help them stay organized and connected with the care recipient’s physicians or fellow caregivers.
The more physicians can help get the needed technology to caregivers, experts say, the easier those caregivers’ lives will be. Likewise, the more engaged the caregiver is, the better the outcomes for patients.
“I find great relief and comfort when the family is involved,” said Dr. Manaker, associate professor of medicine at the University of Pennsylvania Medical Center. Having a caregiver working as an ally has made it easier to talk to aging patients facing tough decisions, especially patients who are reluctant to give up their independence, he said.
Gail Hunt, CEO and president of the National Alliance for Caregiving, said all physicians should be having conversations with caregivers on how they best can support each other. Both physicians and caregivers have valuable information that can help the other one meet their obligations to the patient.
What caregivers want
A study published in January by the National Alliance for Caregiving and UnitedHealthcare found that caregivers think technology can help save time (77%), manage the logistics of caregiving more easily (76%), increase feelings of effectiveness as a caregiver (74%), reduce stress (74%) and make a care recipient feel safer (75%).
“If we have a caregiver who is unable to provide care, or is over-burdened, or overly stressed out with care, there’s a much greater likelihood that the patient will need to be placed in some sort of facility, which is much more expensive and costly,” said Sarah Czaja, PhD, scientific director at the Center on Aging at the Leonard M. Miller School of Medicine, University of Miami.
Czaja, who has been involved with several research projects aimed at providing technology to caregivers, said caregivers often don’t know about resources that may help them.
The help caregivers are looking for can be simple moral support through online support groups, ways to communicate directly with the doctor electronically, or more advanced technology that can be the eyes and ears watching over that patient when they can’t.
Physicians carry the greatest influence in prompting caregivers and patients to try a new technology or tool, according to the National Alliance for Caregiving survey. Among the issues that technology is helping to make easier to manage:
Coordination of care. Care recipients generally have more than one physician treating them, so caregivers are tasked with making sure not only that the care recipient makes it to all scheduled appointments, but also that those appointments are productive.
Seventy-seven percent of caregivers want access to the electronic records of the care recipient to obtain information such as health history, medication lists and test results, according to the NAC survey. Many physicians with electronic medical records have online patient portals where patients or their caregivers can download this information. With this access, caregivers can share records from one physician to the next.
The ability of caregivers to log onto the system and retrieve lab results or care records also means better practice efficiency, Dr. Manaker said. There are fewer phone calls and staff time dedicated to tracking down that data, he said.
When Dr. Manaker meets caregivers for the first time, he makes sure patients make all necessary authorizations to have information released to caregivers.
He has had uncomfortable conversations with well-meaning relatives who want to obtain information to help their loved one, except that certain caregivers were never authorized by the patient to receive the information.
Whether the caregiver is accessing information over the phone, by email or through a patient portal, physicians must do their part to make sure that exchange complies with the Health Insurance Portability and Accountability Act. Not only does the physician need to obtain permission to share data with caregivers, but the data must be shared securely. Though emailing may be convenient, if it’s done on an unencrypted or open network and identifiable information is being sent about the patient, the physician is at risk of a HIPAA violation.
Medication compliance. Studies have found that chronically ill patients are noncompliant with their medication about half the time. Some can’t afford to fill their prescriptions, but others don’t remember to take their medication. For physicians, caregivers can be the best resource they have in ensuring that the medications they prescribe are actually taken by the patient.
With a more accurate assessment of medication compliance, doctors will find it easier to determine the effectiveness of a prescribed treatment in case changes are needed. Medication tracking can be easy for caregivers living under the same roof as the care recipient, but for the more than 50% who live elsewhere, medication compliance is trickier. There are several tools on the market that physicians can suggest.
Seventy percent of caregivers not living with a care recipient say a system that would remind the patient when to take medications and dispense pills at the right time would be beneficial, according to the National Alliance for Caregiving survey. There are tools on the market that send audio reminders to the patient to take medications. An alert is sent to the caregiver if a pill hasn’t been taken. There also are smart-pill technologies in development that would send alerts to caregivers or physicians when a pill is swallowed.
Tools that require action on the care recipient’s part must be affordable and easy to use, Hunt said. Physicians can play a great role in finding the right tools for these patients and their caregivers.
Remote monitoring. The longer patients can stay at home and out of long-term-care facilities, the better. Often the key to keeping patients at home is the ability to monitor their conditions between physician visits.
Seventy percent of caregivers said remote monitoring devices that collect data such as vital signs, blood pressure and blood sugar levels, and send that information to physicians or care managers for analysis, would be helpful, according to the National Alliance for Caregiving survey.
Adam Darkins, MD, chief consultant for the Dept. of Veterans Affairs Office of Telehealth Services, said chronic patients generally are not seen more than once every few months in a doctor’s office. “It often happens that in the clinic, all is well, but then they deteriorate two weeks before, or six weeks after [the visit]. And when that happens, they get their right to an urgent appointment by being an [extreme case],” Dr. Darkins said. The VA decided: Instead of putting all the resources into a clinic visit, why not put them into monitoring people?
“A key piece to doing this right from the start was making sure the caregiver was involved,” Dr. Darkins said.
The Veterans Health Administration is often viewed as the gold standard when it comes to telemedicine and home monitoring, Hunt said. Through remote monitoring, the VA has reduced the days in the hospital by up to 30%, according to Dr. Darkins, and has increased patient satisfaction by up to 70%.
With the right technology, caregivers can feel empowered to take on the task of monitoring a patient, but there must be an assessment of the caregiver’s ability to care for the patient. That role of assessing the caregiver and making sure they understand their role is often one that falls on the physician.
Finances are often barriers with this type of technology, both for caregivers and physicians. If physicians were to offer it, they would need staff to manage it. At the VA, the system has a dashboard-type display with a red flag system. A care coordinator within the physician clinic monitors those flags for needed interventions. Another option for physicians is educating caregivers on how to recognize red flags on their own if the monitoring is being done manually and how to know when to call the physician’s office for advice.
Although cost is often cited as a barrier to physician technology adoption, the same is true for caregivers. But despite their concern about costs, nearly half of caregivers surveyed by the National Alliance for Caregiving thought technology could help save money.
Hunt said physicians should educate caregivers on technology and its benefits and help them understand that many technologies are affordable.
Of those surveyed, 88% said that if a health professional involved with the care of the patient explained that the technology would help, caregivers would be more likely to try it. And 80% said they would be more likely to try a technology they were shown how to install and use.
“Technology has a lot of potential ways to aid both the caregiver and the physician in terms of management of care,” Czaja said. “They must work together to identify the options that work best for everyone.”
ACOs could change caregiver role
For many caregivers, one primary responsibility is coordinating the care of their loved ones. They schedule appointments with each specialist and manage the patient’s medical records so each doctors knows what the other one has done.
But that role could change if the care recipient becomes a patient of an accountable care organization.
Under the ideal ACO model of shared responsibility for the patient, care coordination would fall on the organization acting as the head of the ACO, or the patient’s medical home, which would be responsible for the care plan of each patient. But more work is needed to ensure that patients remain at the center of those plans.
James Lee, MD, medical director for hospital efficiency at the Everett (Wash.) Clinic who headed that organization’s ACO demonstration project, said that in an ideal system, a precise care plan for each patient would be crafted by team members at the patient’s medical home. That plan would be transmitted to every member of the patient’s care team, including the caregiver.
Instead of a caregiver taking on the responsibility of reconciling the medical records of each physician the patient sees, all the records would be in a shared electronic medical records system and viewable by the caregiver. The National Quality Forum, Dr. Lee said, “recognizes IT as the glue that ties caregivers and patients and physicians together.” The challenge is to “improve the IT piece so that it is transparent and bi-directional.”
Dr. Lee said that even though ACOs have the technology in place that would allow the care plan to be visible to all parties within an EMR, “today, we don’t have a consensus on what patient-centered care plans should look like.”
“We have made some progress, but a clear care plan will be necessary to give caregivers more information,” he said.
On Oct. 20, the Centers for Medicare & Medicaid Services released the final rule describing the Medicare Shared Savings Plan program being launched by CMS in 2012. As many as 270 ACO networks are expected to participate in the program that will allow them to share bonus money for achieving certain cost-saving goals.
Caregiver access needs to follow HIPAA
Caregivers need access to information to make informed decisions. But regulations in the Health Insurance Portability and Accountability Act don’t make exceptions for caregivers, even if their intentions are good, if they have no authority to view a patient’s medical chart. Therefore, physicians must be careful when working with people seeking information.
The best step physicians can take in ensuring patient privacy is to receive express consent from patients on who they want to grant access to, and exactly what that person is authorized to see.
Betsy Hodge, an attorney in the health care practice at Florida law firm Akerman Senterfitt, said doctors should make clear to patients exactly what someone would have access to if the patient shared login and password information on a physician portal. Even better, she said, is if a caregiver had his or her own login information and access to only the information the care recipient feels comfortable sharing.
Attorney Rene Louapre, who works at the New Orleans offices of McGlinchey Stafford, said physicians should have a paper trail of patients grant-ing caregivers authorization to access records.
Hodge agrees, saying that physicians should try to be as specific as possible on whatever form the patient may sign. It should detail exactly what will be disclosed, and the patient should write down names of everyone with whom he or she is grant-ing access. Those forms should be reviewed with the patient often, as caregivers often change.
Each state also has privacy laws.
“E-Connected Family Caregiver: Bringing Caregiving into the 21st Century,” National Alliance for Caregiving and UnitedHealthcare, January (www.unitedhealthgroup.com/news/rel2011/econnected_family_caregiver_study_jan_2011.pdf)