Care of the Chronically Ill at Home: An Unresolved Dilemma in Health Policy for the United States

1. Care of the Chronically Ill at Home: An Unresolved Dilemma in Health Policy for the United States Courtney Roberts Buhler-Wilkerson, K. (2007). Care of the chronically ill at home: An unresolved dilemma in health policy for the united states. The Milbank Quarterly, 85(4), 611-639.

2. Introduction • Chronically ill patients have always needed assistance at home- not a new problem • No agreement has been reached concerning the proper balance between governmental resources and private resources • Private and public insurers have created financial incentives to contain costs • Continuous and repetitious efforts to solve problems of the chronically ill reflect the unavoidable tensions between fiscal reality and legitimate need • The history of organized home care for the chronically ill makes clear the contemporary policy dilemma

3. Origins of Organized Home Care • Care of the sick was a part of domestic life in the early nineteenth century • Charleston’s Ladies Benevolent Society (LBS) • Earliest known organized effort to care for the sick at home • Wealthy women of Charleston, SC • Entered homes of the poor and dependent to offer care and comfort • Urbanization, industrialization, immigration, and danger of infectious diseases had transformed cities to unhealthy places to live

4. Insurance Coverage for Visiting Nurses • Metropolitan Life Insurance Company (1909) • Dramatically improved nurse organizations with an insurance payment scheme • Increasing life span of policyholders lowered number of death claims as well as cost of premiums, which attracted more policyholders • Nurses could extend services to more patients due to additional funds • Nurses not happy about having to conduct work in a scientific and businesslike fashion, but liked the financial support • Industrial insurance purchased by poor and working-class populations was known as insurance for the masses

5. The Unseen Plague of Chronic Illness • Visiting nurses were caring for more and more patients with heart disease, cancer, strokes, diabetes, and arteriosclerosis • Louis Dublin (physician) was one of the first to observe the shift to chronic disease • Tracked the mortality of policyholders • In a desperate search for ways to pay for chronic care, Sophie Nelson was commissioned to test the ability of nurses to cure the progress of chronic illness • Results showed that limited & unlimited care of chronically ill produced same outcomes • Key question was whether a payment system could be established that was stringent enough to avoid paying for long-term person care, elastic enough to care for patients with the potential to recover&humane enough to cover the care of patients requiring skilled care to minimize sufferings • Old Age Assistance dramatically rebalanced the locus of care for chronically ill • Social Security Act encouraged incremental expansion of private nursing homes for chronically ill older people

6. Changing Times, New Challenges • The nursing services of the MLI and Hancock continued to grow until the Depression • Policies lapsed, and the cost per nurse’s visit rose; this combination made visiting nurses seem like a less economically viable method of preventing death or attracting customers • The closing of MLI’s nursing service seemed inevitable • Hancock also experienced a change in social and health care circumstances • Funding medical research was a better investment

7. The Postwar Search for a New Paradigm • Ernest Boas (physician) argues that justice & decency demanded community support for those unable to help themselves • Believed that communities should establish policies to care for chronically ill • Haphazard development needed to be replaced by a consistent policy with central responsibility and the authority to offer comprehensive care • Only a reconceptualization of health services for chronically ill and identification of new sources of payments would bring about an alternative system of care • Commission on Chronic Illness: joint effort from American Medical Association, American Hospital Association, American Public Health Association, American Public Welfare Association, and American Public Welfare Association • Solving the problems of chronically ill required money, housing, and adequate medical and nursing care • The creation of a single coordinated structure for all would solve these complex health care problems

8. Back-to-the-Home Care Movement • The government and the American Medical Association studied home care and pronounced its coming of age • Home care= dynamic approach to far-reaching problems of chronic illness • Proclaimed a crucial &respected component in continuum of care • Montefiore Hospital Home Care Program • Seen as a hospital truly moving into the future • First permanent, organized example of home care • Coordinated home care programs were descendants of Montefiore Program • Caring for the sick in their homes was more natural and humane and reduced costs of hospital care • Patients happier at home • Conclusion was that only in cases of serious illness was home care a reasonable benefit to include in an insurance premium

9. Devising a Federal Policy for Home Care • Home care appeared, disappeared& reappeared during the decade of debate and resulted in Medicare & Medicaid • The ability to save money always assumed the availability of unpaid family caregivers who would supplement professional care • Care at home=home health care • Government-sponsored home care programs came to be financed mainly through the federal Medicare program, Medicaid, and Title III of the Older Americans Act • Implementation of Medicare program marked a new era for home care • Less than perfect solution to health care needs of aging & chronically ill

10. Home Care as an Alternative to Nursing Home Care • Thought to be a cost-effective substitute, but did not actually reduce costs • Families sought relief • Medicaid actually offered more extensive coverage for chronically ill and also paid for long-term care • Paid for both institutional and home-based long-term care for chronically ill poor

11. Home Care Utilization Expands • Variety of legislative, judicial & regulatory changes lead to expansion of home care benefits • Omnibus Reconciliation Act of 1980: removed limits on number of home care visits, prior hospitalization requirements & deductibles • Fox vs. Bowen and Duggen vs. Bowen changed composition of agencies that provided home service • By end of 1980s, 1/3 of all Medicare-certified home care agencies were for profit • Proprietary agencies provided more visits compared with those by nonprofit or governmental agencies • Introduction of hospital prospective payment system: hospitals & physicians became interested in bring hospital home • homecare became more expensive as more patients were discharged

12. Home Care Utilization Expands • Integration of acute & home care services became popular in 1990s • Attempt to integrate & coordinate care across settings by experimenting w/ service delivery & financial models • Hope to address problems of fragmented services, cost containment, misgivings about social welfare services, restrictive reimbursement, burden of family caregiving • Important lessons about integration & financial problems were learned, but no universal paradigm was accepted • Medicare’s coverage for home care considered out of control • Ambiguity over liberalized interpretations of criteria for eligibility & coverage created opportunity for providers of home care to recast Medicare benefit • Number of visits doubled to meet needs of short-term acute illness began to provide long-term care to chronically ill • Federal government found home care difficult to manage/control • Expansion of home care deemed unsustainable and demands for reform were proclaimed

13. Home Care Utilization Expands • Growth of home care raised questions of how much and what kind of home care would be paid for, who should receive it & who would provide it and for how long • Inability of policymakers to visualize elements, outcomes, or value of home care • Difficult to decide whether caring for sick at home was a civic duty or family responsibility • Caused unease • Balanced Budget Act of 1997 • Radically transformed Medicare home care benefit • Outcomes were swift & dramatic • Home care characterized by family caregiving, not services

14. Family Caregiving • Cost of unpaid care provided by family members to chronically ill/disabled was absent • Investment far exceeds government spending • Physical, mental, and economic costs undeniable • Complex, costly, exhausting, and may continue for years without assistance or training • Rarely acknowledged by policymakers, but is an essential aspect of health care • Multifaceted and enormous policy issue • Families seek private assistance • Hard to afford services

15. Home Care’s Future • Federal bureaucrats & policymakers repaired some of the legislation’s damage to home care system • Changes in financing= reinvention of care • Payment system implemented in October 2000 • Most dramatic change affecting home care since Medicare • Movement of home care from cost-based payment to predetermined payment intended to provide financial incentives for more efficient care delivery • Means new set of opportunities and risks

16. Home Care’s Future • Metropolitan Life Insurance Company • Goal: intensive & targeted approach to home care aimed at constraining growth through better management & monitoring • Increases in skilled care, decreases in visits by home health aides, fewer users, & brief episodes of care indicate that these new incentives have successfully transformed Medicare back to focusing on short-term care • No significant negative impact on patients’ function, health status, hospital readmission, or emergency room use • Appropriate payment rates are latest topic in debate between those providing care & the government

17. Conclusion • Crushing burden of indefinite home care expenses for family members of chronically ill patients • By 20th century, the needs of a growing elderly population prompted decades of research, policy development, experimental models & proposals for new paradigms of care delivery & financing • Waiting for a complete breakdown of long-term care before definitive action is taken • History of home care explains much about current challenges and their possible resolution, but only if we are willing to confront an enduring set of questions w/ measured & balanced answers • Home care will be the answer when long-term care policy debate moves beyond economic analysis of the role of home care in continuum of care • Public financing of long-term care at home needs to be viewed as a matter of quality of life & safety, as well as an investment in greater function & independence • Ability to save money using home care will depend on the availability of family members

18. Conclusion • It is difficult to envision an approach to care at home that would create an universally acceptable balance of self-sacrifice, personal responsibility, & expanded financial resources (public & private) • Difficult to resolve whether home care is a publicly funded civic duty or private family responsibility • Policymakers & public believe that long-term care is a family responsibility • Seems unlikely that home care will become the cornerstone of delivery of care for chronically ill • Private, unseen & uncontrollable nature of caring for sick at home, combined w/ open-ended nature of chronic illness make institutionalization of home care essentially untenable in context of political, social & economic realities, cultures and incentives • Individual responsibility is likely to remain the “American way” at least for the foreseeable future