Research Original Investigation
Caregivers Who Assist Older Adults With Health Care Activities
Invited Commentary
Putting the Spotlight on Invisible Family Caregivers Carol Levine, MA
Almost every aspect of the American health care system is changing rapidly. If there is one constant in these efforts, it is the move from expensive hospital-based care to less expensive care at home and in the community. To provide care Related article page 372 for an aging population with multiple chronic conditions in this new environment, policy makers and health care professionals recognize the need for an expanded workforce trained in geriatrics.1 To date, workforce discussions have focused almost exclusively on expanding the pool of well-trained professionals and paraprofessionals. This perspective fails to fully recognize the invisible workforce of unpaid and largely untrained family caregivers (including relatives, friends, and neighbors) who provide most of the care at home. In addition to their more familiar roles assisting with personal care and household tasks, family caregivers provide and coordinate complex chronic care. Using data from the 2011 National Health and Aging Trends Study and the linked National Study of Caregiving, Wolff and colleagues2 in this issue of JAMA Internal Medicine have added compelling evidence to other studies demonstrating that family caregivers are an essential but vulnerable component of the new health care workforce.3 While other national family caregiver surveys look at a broad age range of the estimated 40 to 44 million Americans caring for adults with chronic illnesses, the National Health and Aging Trends Study findings describe family caregiving for people 65 years and older, a particularly vulnerable population estimated in this study at 14.7 million. The study by Wolff and colleagues2 focuses on help provided by family caregivers in care coordination and medication management, two of the most common and challenging tasks in chronic care. Care coordination can include accompanying the person to physician visits and asking questions about treatments and medications. It can also include communications with a range of health care professionals, payers, and community services. Medication management may include organizing multiple drugs in many forms, making sure that the person takes them appropriately, and giving injections, infusions, and other treatments, as well as reporting adverse effects. While essential, such assistance takes a toll on caregivers. In the study by Wolff and colleagues,2 family caregivers who provided substantial help (defined as assisting with both care coordination and medication management) were significantly more likely than others to be caring for a person with dementia alone or dementia in conjunction with a severe functional disability. These caregivers were also more likely to be older, less likely to report their own health as excellent or very good, and more likely to experience emotional and physical problems. Caregiving negatively affected their employment 380
and their ability to participate in valued activities, supplementing evidence about the financial burden on families caring for people with dementia in the last 5 years of life.
Family Caregivers in a Changing Health Care Environment Despite accumulating and compelling evidence, family caregivers are still largely ignored in discussions of workforce health care reform. One reason is the sheer magnitude of the caregiver population. Paying family caregivers even a modest $12.50 an hour would add $470 billion a year to health care costs.4 Some state programs offer qualified Medicaid beneficiaries a specific budget that they can use to hire personal attendants. They usually choose family members, but not all family members are eligible. Because the hourly wage is low, hours are limited, and there are no associated employee benefits, such as health insurance, these payments offer only modest value to the family. While these programs are popular, it is largely because they are more flexible and person centered than home care agency services. Another reason for the weak policy response is that under most public and private insurance plans the patient alone is entitled to services. With no reimbursement for involving family caregivers, there are few incentives for professionals to train them to do tasks competently and to provide follow-up support. The recent change in Medicare rules reimbursing physicians and their staff for holding advance care discussions is promising but limited.5 Another reason family caregivers are left out of workforce policy proposals is the misunderstanding that the Health Insurance Portability and Accountability Act of 1996 (the federal privacy law) prevents health care professionals from sharing a patient’s medical information. The law is clear. Unless the patient objects (and even in some circumstances if that occurs), health care professionals can share relevant information with anyone who provides or pays for care.6 Patients can designate individuals they do (or do not) want to have personal medical information that is directly related to their care at home. Hospitals, health care systems, and ambulatory care settings should ensure that staff understand and follow the law. Several current policy proposals would help family caregivers, including paid family leave, tax and Social Security credits, enhanced respite services, and more flexible employment policies. While changing policy is a slow, arduous process, physicians and their staff can make important changes right now to better support family caregivers.
Practice Changes That Can Be Instituted Today Physicians and other professionals should conduct a routine assessment of family caregivers using a systematic approach to ask about the person’s willingness, capabilities, experiences, health status, and other relevant factors. The United Hospital Fund’s Next Step in Care website has a health care pro-
JAMA Internal Medicine March 2016 Volume 176, Number 3 (Reprinted)
Copyright 2016 American Medical Association. All rights reserved.
Downloaded From: http://archinte.jamanetwork.com/ by a New York University User on 03/18/2016
jamainternalmedicine.com
Caregivers Who Assist Older Adults With Health Care Activities
fessional version of a family caregiver self-assessment tool.7 This simple tool asks about the caregiver’s other responsibilities and health status. It outlines some common tasks and asks whether the caregiver already does this task, would be able to do so with training, or cannot do it at all. A final section asks about worries, which is often a clue to other problems that may affect a care plan. There are many other assessment tools available. An organization or a medical office can determine which best fits its setting and population.
Reluctance to Use Support Services Not all the problems are related to policy or practice. Many people are still unfamiliar with the term family caregiver or find it unacceptable. Caregivers see themselves as daughters, sons, ARTICLE INFORMATION Author Affiliation: Families and Health Care Project, United Hospital Fund, New York, New York. Corresponding Author: Carol Levine, MA, Families and Health Care Project, United Hospital Fund, 1411 Broadway, 12th Floor, New York, NY10018 (clevine @uhfnyc.org). Published Online: February 15, 2016. doi:10.1001/jamainternmed.2015.8002. Conflict of Interest Disclosures: Ms Levine reported being the director of the Families and Health Care Project at the United Hospital Fund, an independent nonprofit health services and policy research organization in New York City. No other disclosures were reported. REFERENCES 1. Institute of Medicine. Retooling for an Aging America: Building the Health Care Workforce. http:
jamainternalmedicine.com
Original Investigation Research
spouses, or friends, and not as caregivers, a designation that they associate with professionals. Even when family caregivers do recognize the term, they may not use the services to which they are referred (primarily support groups and sessions about caregiver self-care). While these services are important, overwhelmed caregivers may not use them. Few address medication management or care coordination. Finally, family members may not want their caregivers to share their difficulties with outsiders. The study by Wolff and colleagues2 confirms and extends the existing knowledge about family caregivers who provide the most demanding levels of care for older adults at high risk of poor outcomes. Shining the spotlight on invisible family caregivers is just the first step, but it may be the most important.
//iom.nationalacademies.org/~/media/Files/Report %20Files/2008/Retooling-for-an-Aging-AmericaBuilding-the-Health-Care-Workforce /ReportBriefRetoolingforanAgingAmericaBuilding theHealthCareWorkforce.pdf. Report Brief April 2008. Accessed December 8, 2015. 2. Wolff JL, Spillman BC, Freedman VA, Kasper JD. A national profile of family and unpaid caregivers who assist older adults with health care activities [published online February 15, 2016]. JAMA Intern Med. doi:10.1001/jamainternmed.2015.7664. 3. Reinhard SC, Levine C, Samis S; Council on Scientific Affairs, American Medical Association. Physicians and family caregivers: a model for partnership. JAMA. 1993;269(10):1282-1284. 4. Reinhard S, Feinberg L, Choula R, Houser A; AARP Public Policy Institute. Valuing the invaluable 2015 update: undeniable progress, but big gaps
remain. http://www.aarp.org/ppi/info-2015 /valuing-the-invaluable-2015-update.html. Published July 16, 2015. Accessed December 8, 2015. 5. Pear R. New Medicare rule authorizes end-of-life consultations. New York Times. October 31, 2015:A14. 6. US Department of Health & Human Services. Office for Civil Rights. http://www.hhs.gov/ocr /privacy/hipaa/understanding/consumers /familyfriends.html. Accessed December 8, 2015. 7. United Hospital Fund Next Step in Care. What do you need as a family caregiver? http://www .nextstepincare.org/next_step_in_care_guides/62 /Assessing_Family_Caregivers. Published 2008. Accessed December 8, 2015.
(Reprinted) JAMA Internal Medicine March 2016 Volume 176, Number 3
Copyright 2016 American Medical Association. All rights reserved.
Downloaded From: http://archinte.jamanetwork.com/ by a New York University User on 03/18/2016
381
Caregivers Who Assist Older Adults With Health Care Activities
Invited Commentary
Putting the Spotlight on Invisible Family Caregivers Carol Levine, MA
Almost every aspect of the American health care system is changing rapidly. If there is one constant in these efforts, it is the move from expensive hospital-based care to less expensive care at home and in the community. To provide care Related article page 372 for an aging population with multiple chronic conditions in this new environment, policy makers and health care professionals recognize the need for an expanded workforce trained in geriatrics.1 To date, workforce discussions have focused almost exclusively on expanding the pool of well-trained professionals and paraprofessionals. This perspective fails to fully recognize the invisible workforce of unpaid and largely untrained family caregivers (including relatives, friends, and neighbors) who provide most of the care at home. In addition to their more familiar roles assisting with personal care and household tasks, family caregivers provide and coordinate complex chronic care. Using data from the 2011 National Health and Aging Trends Study and the linked National Study of Caregiving, Wolff and colleagues2 in this issue of JAMA Internal Medicine have added compelling evidence to other studies demonstrating that family caregivers are an essential but vulnerable component of the new health care workforce.3 While other national family caregiver surveys look at a broad age range of the estimated 40 to 44 million Americans caring for adults with chronic illnesses, the National Health and Aging Trends Study findings describe family caregiving for people 65 years and older, a particularly vulnerable population estimated in this study at 14.7 million. The study by Wolff and colleagues2 focuses on help provided by family caregivers in care coordination and medication management, two of the most common and challenging tasks in chronic care. Care coordination can include accompanying the person to physician visits and asking questions about treatments and medications. It can also include communications with a range of health care professionals, payers, and community services. Medication management may include organizing multiple drugs in many forms, making sure that the person takes them appropriately, and giving injections, infusions, and other treatments, as well as reporting adverse effects. While essential, such assistance takes a toll on caregivers. In the study by Wolff and colleagues,2 family caregivers who provided substantial help (defined as assisting with both care coordination and medication management) were significantly more likely than others to be caring for a person with dementia alone or dementia in conjunction with a severe functional disability. These caregivers were also more likely to be older, less likely to report their own health as excellent or very good, and more likely to experience emotional and physical problems. Caregiving negatively affected their employment 380
and their ability to participate in valued activities, supplementing evidence about the financial burden on families caring for people with dementia in the last 5 years of life.
Family Caregivers in a Changing Health Care Environment Despite accumulating and compelling evidence, family caregivers are still largely ignored in discussions of workforce health care reform. One reason is the sheer magnitude of the caregiver population. Paying family caregivers even a modest $12.50 an hour would add $470 billion a year to health care costs.4 Some state programs offer qualified Medicaid beneficiaries a specific budget that they can use to hire personal attendants. They usually choose family members, but not all family members are eligible. Because the hourly wage is low, hours are limited, and there are no associated employee benefits, such as health insurance, these payments offer only modest value to the family. While these programs are popular, it is largely because they are more flexible and person centered than home care agency services. Another reason for the weak policy response is that under most public and private insurance plans the patient alone is entitled to services. With no reimbursement for involving family caregivers, there are few incentives for professionals to train them to do tasks competently and to provide follow-up support. The recent change in Medicare rules reimbursing physicians and their staff for holding advance care discussions is promising but limited.5 Another reason family caregivers are left out of workforce policy proposals is the misunderstanding that the Health Insurance Portability and Accountability Act of 1996 (the federal privacy law) prevents health care professionals from sharing a patient’s medical information. The law is clear. Unless the patient objects (and even in some circumstances if that occurs), health care professionals can share relevant information with anyone who provides or pays for care.6 Patients can designate individuals they do (or do not) want to have personal medical information that is directly related to their care at home. Hospitals, health care systems, and ambulatory care settings should ensure that staff understand and follow the law. Several current policy proposals would help family caregivers, including paid family leave, tax and Social Security credits, enhanced respite services, and more flexible employment policies. While changing policy is a slow, arduous process, physicians and their staff can make important changes right now to better support family caregivers.
Practice Changes That Can Be Instituted Today Physicians and other professionals should conduct a routine assessment of family caregivers using a systematic approach to ask about the person’s willingness, capabilities, experiences, health status, and other relevant factors. The United Hospital Fund’s Next Step in Care website has a health care pro-
JAMA Internal Medicine March 2016 Volume 176, Number 3 (Reprinted)
Copyright 2016 American Medical Association. All rights reserved.
Downloaded From: http://archinte.jamanetwork.com/ by a New York University User on 03/18/2016
jamainternalmedicine.com
Caregivers Who Assist Older Adults With Health Care Activities
fessional version of a family caregiver self-assessment tool.7 This simple tool asks about the caregiver’s other responsibilities and health status. It outlines some common tasks and asks whether the caregiver already does this task, would be able to do so with training, or cannot do it at all. A final section asks about worries, which is often a clue to other problems that may affect a care plan. There are many other assessment tools available. An organization or a medical office can determine which best fits its setting and population.
Reluctance to Use Support Services Not all the problems are related to policy or practice. Many people are still unfamiliar with the term family caregiver or find it unacceptable. Caregivers see themselves as daughters, sons, ARTICLE INFORMATION Author Affiliation: Families and Health Care Project, United Hospital Fund, New York, New York. Corresponding Author: Carol Levine, MA, Families and Health Care Project, United Hospital Fund, 1411 Broadway, 12th Floor, New York, NY10018 (clevine @uhfnyc.org). Published Online: February 15, 2016. doi:10.1001/jamainternmed.2015.8002. Conflict of Interest Disclosures: Ms Levine reported being the director of the Families and Health Care Project at the United Hospital Fund, an independent nonprofit health services and policy research organization in New York City. No other disclosures were reported. REFERENCES 1. Institute of Medicine. Retooling for an Aging America: Building the Health Care Workforce. http:
jamainternalmedicine.com
Original Investigation Research
spouses, or friends, and not as caregivers, a designation that they associate with professionals. Even when family caregivers do recognize the term, they may not use the services to which they are referred (primarily support groups and sessions about caregiver self-care). While these services are important, overwhelmed caregivers may not use them. Few address medication management or care coordination. Finally, family members may not want their caregivers to share their difficulties with outsiders. The study by Wolff and colleagues2 confirms and extends the existing knowledge about family caregivers who provide the most demanding levels of care for older adults at high risk of poor outcomes. Shining the spotlight on invisible family caregivers is just the first step, but it may be the most important.
//iom.nationalacademies.org/~/media/Files/Report %20Files/2008/Retooling-for-an-Aging-AmericaBuilding-the-Health-Care-Workforce /ReportBriefRetoolingforanAgingAmericaBuilding theHealthCareWorkforce.pdf. Report Brief April 2008. Accessed December 8, 2015. 2. Wolff JL, Spillman BC, Freedman VA, Kasper JD. A national profile of family and unpaid caregivers who assist older adults with health care activities [published online February 15, 2016]. JAMA Intern Med. doi:10.1001/jamainternmed.2015.7664. 3. Reinhard SC, Levine C, Samis S; Council on Scientific Affairs, American Medical Association. Physicians and family caregivers: a model for partnership. JAMA. 1993;269(10):1282-1284. 4. Reinhard S, Feinberg L, Choula R, Houser A; AARP Public Policy Institute. Valuing the invaluable 2015 update: undeniable progress, but big gaps
remain. http://www.aarp.org/ppi/info-2015 /valuing-the-invaluable-2015-update.html. Published July 16, 2015. Accessed December 8, 2015. 5. Pear R. New Medicare rule authorizes end-of-life consultations. New York Times. October 31, 2015:A14. 6. US Department of Health & Human Services. Office for Civil Rights. http://www.hhs.gov/ocr /privacy/hipaa/understanding/consumers /familyfriends.html. Accessed December 8, 2015. 7. United Hospital Fund Next Step in Care. What do you need as a family caregiver? http://www .nextstepincare.org/next_step_in_care_guides/62 /Assessing_Family_Caregivers. Published 2008. Accessed December 8, 2015.
(Reprinted) JAMA Internal Medicine March 2016 Volume 176, Number 3
Copyright 2016 American Medical Association. All rights reserved.
Downloaded From: http://archinte.jamanetwork.com/ by a New York University User on 03/18/2016
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