Are Family Caregivers an Overlooked Resource?

They very often fill out the patient's questionnaire, so essential to HCAHPS scores. They influence the patient's opinion of the hospital. They can be a huge help (or a huge hindrance) to the clinical staff. They see that the patient takes medications and schedules follow up appointments. Who are they? It shouldn't be a surprise that they are the patient's informal caregivers — the family members or loved ones who support your patient in and out of the hospital.

More than one in four U.S. adults (29 percent) provide care or are the primary health contact for someone who is ill, disabled or aged.1 Estimates suggest that the number of caregivers will only continue to rise. The population aged 65 and older in the U.S. is expected to double between 2000 and 2030, increasing from 35.1 million in 2000 to 71.5 million in 2030.2 Two-thirds of the U.S. public expects to be caregivers in the future, and 43 percent report that it is very likely that they will become a family caregiver at a future time.3 All of this has major implications for healthcare providers.

Whether it is the spouse, adult child or a loved one of a patient, hospitals and health systems are just beginning to recognize the importance of the informal caregiver's involvement in the care plan — from selection of provider, to interaction with the provider, throughout treatment, getting prescriptions filled, and to discharge planning and putting in place support systems. Why is educating and involving caregivers so important to hospitals? Consider the fact that nearly 20 percent of Medicare hospitalizations are followed by readmission within 30 days, and the vast majority of them appear to be unplanned. According to MedPAC, 75 percent of these readmissions are preventable.4 With Medicare payment being withheld for patients readmitted within 30 days, hospitals and health systems are and will continue to be at financial risk for inappropriate readmissions and will need to be seeking innovative strategies to reduce these preventable readmissions. I submit that the informal caregiver should be seen as a key resource by hospitals in addressing these issues.

As part of a hospital's communications strategy, offering resources for informal caregivers, both those who are the healthcare decision makers and those who are the day-to-day caregivers (sometimes one and the same) can have a huge impact. Most hospitals provide information about advance directives — living will, medical durable power of attorney, etc. — which is very important. But it is by no means enough. Few provide information and resources about the many other issues that informal caregivers face in the course of caring for and supporting their loved one — before, during and after a hospital interaction, as well as handling long-term health needs. Some hospitals offer a patient portal, but few of them consider the informal caregiver as an integral part of that portal strategy. "Patients and their caregivers are primed and looking for pre- and post-procedure and related educational content that clearly adds value to the patient experience," says Daniel Fell, president and CEO of advertising agency Neathawk Dubuque & Packett, "Most unfortunately, this is what hospital websites are doing the least of."

Here are some items that hospitals should consider incorporating as part of a strategy specifically targeted to the informal caregiver:

Before the hospital: Selecting and communicating with providers
Informal caregivers often play a key role in selecting the physician and hospital for their loved one. What are they looking for in the provider? It's not always the same thing that the patient is looking for. Almost as important as clinical skills, caregivers are looking for a provider who will be considerate of them and communicate well with them, not see them as a burden. Simply ask any primary care physician the percent of their Medicare patients who have a caregiver in the exam room with them to see how involved they are in the process.

Hospitals need to help them navigate the healthcare system with their loved one, and make it easy for them to get the information they need to support that loved one. Additionally, with so many physicians now being employed by hospitals, the physician's office can be a great place to begin this dialogue and provide the direction to resources.           

HIPAA, the Health Insurance Portability and Accountability Act, definitely comes into play here, and in all communications and interaction with informal caregivers. Providers need to reach out proactively to the patient and the caregiver to ensure that they know the patient's wishes for who may receive information and how much information they may receive. There's nothing more frustrating to a caregiver than having information withheld that the patient wants them to have. It's an important conversation for patients and their family members to have when they're healthy; providers should make it clear to them what exactly they need to have in order to share information with the informal caregiver. Hospitals need to put themselves in the caregiver's place and consider what empowers them.

The hospital interaction
Caregivers can be an important help in the care plan — and also a major hindrance if not handled properly. So it's in the hospital's best interest to help caregivers understand the care process and why they are necessary from the hospital's perspective.

From the beginning of the interaction (and before, if a stay is planned), the hospital should help the patient and caregiver identify the primary family contact and make sure appropriate permissions are in place to communicate with the caregiver(s). If the healthcare decision maker is a different person from the primary caregiver, they need to communicate appropriately and consistently with both.

Often the lack of information on "normal" hospital procedures leads to misunderstandings and problems between caregivers and staff. What's the best way to communicate with the nursing staff? With the physicians? With the rest of the family? How much time should caregivers spend at the hospital with their loved one? How are decisions made regarding responding to call lights? How do caregivers address issues or concerns with the hospital stay? And so forth.

Most important, caregivers need to understand that often they may have less than 24 hours' notice of discharge from the hospital. The hospital should help the patient and caregiver work through what will be the needs of the patient after the stay. Will he or she need temporary or permanent changes to the home environment to be able to return and stay home? Is there a possibility that the patient won't be able to live alone anymore? Will the patient need assisted living permanently or temporarily? Hospitals need to direct patients and their family members to resources that describe options, and what each involves.

Of huge importance, caregivers often have a major influence on the patient's satisfaction level with the hospital interaction and, in fact, are often the persons completing the satisfaction survey — up to 30 percent or more by some hospitals' estimates! This fact is important to keep in mind, particularly for the hospital CFO who is increasingly monitoring HCAHPS scores.

When the patient is discharged, it's important that the patient and caregiver understand and follow discharge instructions. Topics that should be addressed include the importance of understanding medications properly. Patients and their caregivers need to be sure they understand what medications are new and why they were prescribed — it’s not unusual to have 4-6 new prescriptions — what medications are changed and what medications should be stopped. If they can't afford the medications, they should make sure the physician and staff know this — they may be able to help. The importance of the follow-up visit with the family physician and/or specialists needs to be explained and emphasized.

With information overload at the time of discharge, patients and their caregivers may need to reference discharge instructions multiple times, and pieces of paper are easily misplaced and difficult to share. A best practice would be including those instructions as part of web content and individualized patient portals.

After the stay
In our conversations with discharge planning experts, they consistently gave us two primary reasons for readmissions: not taking medications (or taking them incorrectly), and not following up with the primary care physician. Informal caregivers play a critical role. They are often the ones who are making sure prescriptions are filled and medications taken, and that physician appointments are made and kept. As noted above, a patient portal can be a key resource for making sure medication and physician appointment information are readily available.

For those patients with problems performing activities of daily living, the hospital should offer information about how to adapt the home environment, from simple changes to where to obtain adaptive devices. Online assessments that address activities of daily living can be invaluable and can have a positive impact on patients and their caregiver's attitude towards the hospital. It should not escape the hospital's attention that Medicare's spending for beneficiaries with both chronic conditions and functional limitations averages about twice the amount for Medicare beneficiaries with three or more chronic conditions but without functional limitations!

Long-term care
Families are the major provider of long-term care, but research has shown that caregiving exacts a heavy emotional, physical and financial toll. Many caregivers who have the dual role of caregiver and breadwinner experience conflicts between these responsibilities. More than 1 in 5 caregivers (22 percent) are assisting two individuals, while nearly 1 in 10 (8 percent) are caring for three or more. Almost half of all caregivers are over age 50, making them more vulnerable to a decline in their own health, and one-third describe their own health as fair to poor.5

Because of the high cost of long-term care, unpaid family caregivers will likely continue to be the largest source of long-term care services in the U.S.6 The Home Alone study ― a study of family caregivers who provide complex chronic care ― found that nearly half of the caregivers surveyed (46 percent) performed medical and nursing tasks. More than 96 percent of those also provided activities of daily living support (e.g., personal hygiene, dressing/undressing, or getting in and out of bed), or instrumental activities of daily living support (e.g., taking prescribed medications, shopping for groceries, transportation or using technology) or both. Of these caregivers, nearly two-thirds did all three types of tasks. Of the non-medical family caregivers, two-thirds provided IADL assistance only.7

Hospitals would do well to help support these caregivers, not just right after the stay, but continually, building a bond between the hospital and the caregiver. Too often, there is little effort to communicate with these caregivers and to provide them with information and resources that can empower them and increase their confidence in being more engaged.

This is just a start. Hospitals need to expand their expertise to take their communication with caregivers to the next level, and so much of this can be provided online. It's more than just health content; it's targeted information! Experts agree that the results of doing so could make a significant difference in increasing satisfaction and reducing readmissions. In the Journal of Internal Medicine, Laurie Barclay, MD, said, "By recognizing the importance of the caregiver role, hospitals and physicians can facilitate a positive caregiving experience, thereby reducing rates of patient hospitalization and readmission..."8 Obviously the time has come to pay more attention to caregivers and provide them the specific resources they need.

Daniel E. Ansel is president and CEO of Private Health News, which creates award-winning e-communication solutions and CRM/Marketing tools currently used by over 400 health providers. He has developed programs for organizations including: Procter & Gamble, HONDA of America, Humana, Catholic Health Partners, AstraZeneca Pharmaceuticals, Kaiser and Dignity Health. Currently his company is rolling out Active Daily Living, Inc., an e-based program, that will allow hospitals to deliver personalized solutions and targeted products to help manage the risk older adults & their caregivers experience in maintaining independence.


1 The National Alliance for Caregiving and AARP, Caregiving in the U.S. National Alliance for Caregiving. Washington, DC, November 2009

2 Coughlin, J., Estimating the Impact of Caregiving and Employment on Well-Being. Outcomes & Insights in Health Management, Vol. 2; Issue 1, May 2010

3 Opinion Research Corporation, 2005

4 Hines, Steve, PhD, Vice President, Research, Health Research & Educational Trust. Reducing avoidable hospital readmissions. June 4, 2010.

5 Department of Health and Human Services, Administration on Aging 2013

6 Coughlin, J., Estimating the Impact of Caregiving and Employment on Well-Being. Outcomes & Insights in Health Management, Vol. 2; Issue 1 May 2010.

7 Home Alone: Family Caregivers Providing Complex Chronic Care, AARP with United Health Hospital Fund October 2012

8 Ethical Guidelines address Patient-Physician-Caregiver Relationships, Laurie Barclay, MD, Journal of Internal Medicine 01/22/2010


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