Care of the Chronically Ill at

Home: An Unresolved

Dilemma in Health Policy for the United

StatesCourtney 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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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