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Phantoms of Home Care: Regulatory Constraints on Home Care Nurse Care Management of Persons With Alzheimer's Disease
William D. Cabin, JD, MSW
Hunter College School of Social Welfare/City University of New York, New York, williamcabin @yahoo.com., Quality Assurance, Research, and Evaluation, The Fortune Society, New York, New York
Early indications are that the Medicare home health prospective payment system has controlled Medicare home health expenditures. However, studies indicate many unresolved questions about whether the prospective payment system improves patient quality of care and is cost-effective. The question persists as to whether the prospective payment system has intensified the Medicare home health benefit's historic focus on acute medical care, ignoring the needs of persons with chronic diseases. The article reviews effective home-based palliative care interventions and presents the views of 7 home health care nurses regarding the impact of Medicare requirements on their care decisions for one chronic disease population, patients with Alzheimer's disease. The nurses identify Alzheimer's disease symptom management and psychosocial needs as phantoms, omnipresent below the surface but not attended to by home care clinicians. Nurse coping strategies are discussed. The article asserts that the current failure to simultaneously address the cost and quality-of-life issues of persons with Alzheimer's disease who are cared for at home is analogous to the end-of-life care situation Medicare confronted in the 1970s prior to the Medicare hospice demonstration program, which preceded the Hospice Medicare Benefit. The article asserts that a similar demonstration is appropriate to determine how the prospective payment system might better address quality of life and costs of persons with Alzheimer's disease who are cared for at home.
Key Words: palliative care home care Alzheimer's disease home care nurses
References
- Home Health Compare http://www.medicare.gov/HHCompare/Home.asp?dest=NAV|Home|About. Accessed June 5, 2004.
- Medicare Payment Advisory Commission. Report to the Congress: Medicare Payment Policy. Washington, DC: Medicare Payment Advisory Commission; 2003.
- Medicare Payment Advisory Commission. Home Health Services Payment System. Washington, DC: Medicare Payment Advisory Commission; 2004.
- Medicare Payment Advisory Commission. Report to Congress: Increasing the Value of Medicare. Washington, DC: Medicare Payment Advisory Commission; 2006.
- Outcome Concept Systems. The Effect of the Prospective Payment System on Home Health Quality of Care: A Study Conducted by Outcome Concept Systems, Inc. for the Medicare Payment Advisory Commission. Washington, DC: Medicare Payment Commission; 2004.
- Medicare Payment Advisory Commission. The Home Health Payment System. Presentation to Senate Committee on Finance Staff, March 28, 2003, by Sharon Bee Cheng. http://www.medpac.gov. Accessed December 5, 2005.
- Keepnews D., Capitman JA, Rosati RJ Measuring patient-level clinical outcomes of home health care. J Nurs Scholarsh. 2004;36:85.
- Schlenker RE, Powell MC, Goodrich GK Initial home health outcomes under prospective payment. Health Serv Res. 2005;40:177-193.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Elias JW, Ferry R., Treland J. When world views collide: a commentary on home health care case-mix and patient outcomes. Exp Aging Res. 2000;26:181-188.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Hokenstad A., Hart AY, Gould DA, Halper D., Levine C. Closing the home care case: clinicians' perspectives on family caregiving. Home Health Care Management & Practice. 2005;17:388-397.[Abstract]
- Hokenstad A., Hart AY, Gould DA, Halper D., Levine C. Closing the home care case: home health aides' perspectives on family caregiving. Home Health Care Management & Practice. 2006;18:306-314.[Abstract/Free Full Text]
- Levine C., Albert SM, Hokenstad A., Halper DE, Hart AY, Gould DA " This case is closed": family caregivers and the termination of home health care services for stroke patients. Milbank Q. 2006;84:305-331.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Madigan EA, Fortinsky RH Additional psychometric evaluation of the Outcomes and Assessment Information Set (OASIS). Home Health Care Serv Q. 2000;18:49-62.[Medline]
[Order article via Infotrieve]
- Malinowski R. Results of the 2001 national home health social work survey: did social work practice change under PPS? Home Health Care Management & Practice 2002;14:372-377.[Abstract/Free Full Text]
- Martin KS Home health care, outcomes management and the land of Oz. Outcomes Manag Nurs Pract. 1990;4:7-12.
- Cabin WD Palliative home care for Alzheimer's disease patients and caregivers. Unpublished paper. New York, NY: Hunter College School of Social Welfare; 2005.
- Cabin WD Medicare fiscal requirements' impact on home care nurse care decisions for Alzheimer's disease patients. Unpublished paper. New York, NY: Hunter College School of Social Welfare; 2006.
- Cohen L. No Aging in India: Alzheimer's, the Bad Family, and Other Modern Things. Berkeley, CA: University of California Press; 1998.
- Whitehouse PJ The end of Alzheimer's disease. Alzheimer Dis Assoc Disord. 2001;15:59-62.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Sadik K., Wilcock G. The increasing burden of Alzheimer disease. Alzheimer Dis Assoc Disord. 2003;17(suppl 3): S75-S79.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Wimo A., Winbald B., Aguero-Torres H., von Strauss E. The magnitude of dementia occurrence in the world. Alzheimer Dis Assoc Disord. 2003;17:63-67.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Federal Interagency Forum on Aging-Related Issues. Older Americans 2004: Key Indicators of Well-Being. Washington, DC: US Government Printing Office; 2004.
- National Center for Health Statistics. Health, United States, 2006. Hyattsville, MD: National Center for Health Statistics; 2006.
- McConnell, S. Testimony of Stephen McConnell to the U. S. Senate Committee on Aging, April 27, 2004. http://www.alz.org/advocacy/wherewestand/200400427sm.asp. Accessed December 5, 2004.
- Rice DP, Fillit HM, Max W., Knopman WS, Lloyd JR, Duttagupta S. Prevalence, costs, and treatment of Alzheimer's disease and related dementia: a managed care perspective. Am J Manag Care. 2001;7:809-818.[Web of Science][Medline]
[Order article via Infotrieve]
- McConnell S., Riggs J. The policy challenges of Alzheimer's disease. Generations. 1999;23:69-74.
- Patton MQ Qualitative Evaluation and Research Methods. Thousand Oaks, CA: Sage; 1990.
- Patton MQ III. Qualitative Research and Evaluation Methods. Thousand Oaks, CA: Sage; 2002.
- Friedson E. Profession of Medicine: A Study of the Sociology of Applied Knowledge. Chicago, IL: University of Chicago Press; 1988.
- Parsons T. The Social System. New York, NY: The Free Press; 1951.
- Avorn J. Powerful Medicine: The Benefits, Risks, and Costs of Prescription Drugs. New York, NY: Knopf; 2004.
- Conrad P, ed. Sociology of Health and Illness: Critical Perspectives. 6th ed. New York, NY: Worth; 2001.
- Dubos R. Mirage of Health. New York, NY: Harper & Row; 1959.
- Starr P. The Social Transformation of American Medicine. New York, NY: Basic Books; 1984.
- Starr, P. Social transformation twenty years on. J Health Polit Policy Law. 2004;29:1005-1023.[CrossRef][Web of Science]
- American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed, text rev. Washington, DC: American Psychiatric Association; 2000.
- Anspach RR Deciding Who Lives: Fateful Choices in the Intensive-Care Nursery. Berkeley, CA: University of California Press; 1997.
- Armstrong, E. Lessons in control: prenatal education in the hospital. Soc Probl. 2000;47:583-605.[CrossRef][Web of Science]
- Armstrong E. Conceiving Risk, Bearing Responsibility: Fetal Alcohol Syndrome & the Diagnosis of Moral Disorder. Baltimore, MD: Johns Hopkins University Press; 2003.
- Conrad, P. The shifting engines of medicalization. J Health Soc Behav. 2005;46:3-14.[Web of Science][Medline]
[Order article via Infotrieve]
- Hacker JS The Divided Welfare State: The Battle Over Public and Private Social Benefits in the United States. New York, NY: Cambridge University Press; 2002.
- Kutchins H., Kirk S. Making Us Crazy: DSM, the Psychiatric Bible and the Creation of Mental Disorders. New York, NY: The Free Press; 1997.
- Marmor T. The Politics of Medicare. Chicago, IL: Aldine; 2000.
- Oberlander J. The Political Life of Medicare. Chicago, IL: University of Chicago Press; 2003.
- Rosenberg CE The Care of Strangers: The Rise of America's Hospital System. New York, NY: Basic Books; 1987.
- Rothman DJ The Discovery of the Asylum. Rev ed. Boston, MA: Little, Brown; 2002.
- Rothman DJ Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision-Making. Hawthorne, NY: Aldine de Gruyter; 2003.
- Stevens R. American Medicine and the Public Interest: A History of Specialization (updated ed). Berkeley, CA: University of California Press; 1998.
- Stevens R. In Sickness and in Wealth: American Hospitals in the Twentieth Century (with new material). Baltimore, MD: Johns Hopkins University Press; 1999.
- Ratter W. From Poor Law to Welfare State: A History of Social Welfare in America. 6th ed. New York, NY: The Free Press; 1999.
- Clarke AF, Shim JK, Mamo L., Fosket JR, Fishman JR Biomedicalization: technoscientific transformations of health, illness, and U.S. biomedicine. Am Sociol Rev. 20034;68:161-194.
- Gallagher E., Sionean CK Where medicalization boulevard meets commercialization alley. J Policy Stud. 2004; 16:3-62.
- Kitwood T. Dementia Reconsidered: The Person Comes First. Buckingham, UK: Open University Press; 1997.
- Lyman KA Bringing the social back in: a critique of the biomedicalization of dementia. Gerontologist. 1989;29: 231-242.
- Woods B. The person in dementia care. Generations. 1989;23:35-39.
- Health Care Financing Administration. Medicare Home Health Agency Manual (HCFA Publication No 11). Washington, DC: US Government Printing Office; 1999.
- Health Care Financing Review. Medicare and Medicaid Statistical Supplement. Washington, DC: US Government Printing Office; 2002.
- Duggan et al v Bowen, 691 F Suppl 1487 (DDC 1988).
- Fried L. Medicare for People With Alzheimer's Disease. Issue brief, vol5, no 8. Washington, DC: Center for Medicare Education; 2004.
- Buhler-Wilkerson K. No Place Like Home: A History of Nursing and Home Care in the United States. Baltimore, MD: Johns Hopkins University Press; 2003.
- Clark RL, Burkhauser R., Moon M., Quinn JF, Smeeding TM The Economics of Aging. London: Blackwell Publishing; 2004.
- Dartmouth Atlas Project. The care of patients with severe chronic illness: a report on The Medicare program by the Dartmouth Atlas Project. http://www.dartmouthatlas.org. Accessed July 25, 2006.
- Levine C. The many worlds of family caregivers. In: Levine C, ed. Always on Call: When Illness Turns Families Into Caregivers. New York, NY: United Hospital Fund of New York; 2000:1-17.
- Levine C. Making Room for Family Caregivers: Seven Innovative Hospital Programs. New York, NY: United Hospital Fund; 2003.
- Moon M. Medicare Now and in the Future. 2nd ed. Washington, DC: Urban Institute Press; 1996.
- Vladeck F. Testimony for the commission on affordable housing & health facility needs in the 21st century, January 14, 2002. http://www.uhfnyc.org/homepage3219/homepage_show.htm?doc_id=110766. Accessed October 3, 2004.
- Vladeck F. A Good Place to Grow Old: New York's Model for NORC Supportive Service Programs. New York, NY: United Hospital Fund; 2004.
- Small GW, Rabins PV, Barry PP, et al. Diagnosis and treatment of Alzheimer's disease and related disorders: consensus statement of the American Association for Geriatric Psychiatry, the Alzheimer's Association, and the American Geriatrics Society. JAMA. 1997;278: 1363-1371.[Abstract/Free Full Text]
- Dunkle R., Roberts B., Haug M. The Oldest Old in Everyday Life: Self Perception, Coping With Change, and Stress. New York, NY: Springer; 2001.
- Eisdorfer C., Czaja SJ, Loewenstein DA, et al. The effect of a family therapy and technology-based intervention on caregiver depression. Gerontologist. 2003;43:521-531.[Abstract/Free Full Text]
- Sands LP, Ferreira P., Stewart AL, Brod M., Yaffe K. What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life? Am J Geriatr Psychiatry. 2004;12:272-280.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Schulz R., Burgio L., Burns R., et al. Resources for Enhancing Alzheimer's Caregiver Health (REACH): overview, site-specific outcomes, and future directions. Gerontologist. 2003;43:514-520.[Free Full Text]
- Wisniewski S., Belle S., Marcus S., et al. The Resources for Enhancing Alzheimer's Caregiver Health (REACH): project design and baseline characteristics. Psychol Aging. 2003;18:375-384.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Merton RA Social Theory and Social Structure. Rev ed. Glencoe, IL: The Free Press; 1957.
- Mullaly B. Structural Social Work: Ideology, Theory, and Practice. 2nd ed. Don Mills, Ontario: Oxford University Press; 1997.
- Smarr RB, Carson VB Alzheimer's disease: the emerging face of home health. Caring. 2006;25:6-13.[Medline]
[Order article via Infotrieve]
- Alzheimer's Association. Fact sheet: Medicare home health benefit for caregiver training in 16 states. http://www.alz.org. Accessed July 14, 2006.
- Fabricant M., Fisher R. Settlement Houses Under Siege: The Struggle to Sustain Community Organizations in New York City. New York, NY: Columbia University Press; 2002.
- Kadushin G., Egan M. An exploratory study of social work practice under the Medicare prospective payment system in home health care. Journal of Social Work in Long-Term Care. 2003;3:43-60.
- Lee JS, Rock BD Challenges in the new prospective payment system: action steps for social work in home health care. Health Soc Work. 2005;30:48-55.[Medline]
[Order article via Infotrieve]
- Mittelman M., Ferris S., Steinberg G., et al. An intervention that delays institutionalization of Alzheimer's disease patients: treatment of spouse-caregivers. Gerontologist. 1993;33:730-740.[Abstract]
- Spillman BC, Long SK Does High Caregiver Stress Lead to Nursing Home Entry? Washington, DC: The Urban Institute; 2007.
- Gitlin L., Liebman J., Winter L. Are environmental interventions effective in the management of Alzheimer's disease and related disorders? A synthesis of the evidence. Alzheimer's Care Quarterly. 2003;4:85-107.
- Gitlin LN, Winter L., Dennis MP, Corcoran M., Schinfeld S., Hauck WW A randomized trial of a multicomponent home intervention to reduce functional difficulties in older adults. J Am Geriatr Soc. 2006;54: 809-816.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Mittelman M. Family caregiving for people with Alzheimer's disease: results of the NYU spouse-caregiver intervention study. Generations. 2002;26:104-106.[Web of Science]
- Mittelman M. The feeling of family caregivers: dealing with emotional challenges of caring for an individual with Alzheimer's disease. http://rci.gsw.edu/expalzppt.htm. Accessed December 16, 2004.
- Newcomer R., Arnsberger P., Zhang X. Case management, client risk factors, and service use. Health Care Financ Rev. 1997;19:105-120.[Web of Science][Medline]
[Order article via Infotrieve]
- Yordi C., DuNah R., Bostrom A., Fox P., Wilkinson N., Newcomer R. Caregiver supports: outcomes from the Medicare Alzheimer's Disease Demonstration. Health Care Financ Rev. 1997;19:97-117.[Web of Science][Medline]
[Order article via Infotrieve]
- Chatterji P., Burstein NR, Kidder N., White A. Evaluation of the Program of All-Inclusive Care for the Elderly (PACE) Demonstration: The Impact of PACE on Pertinent Outcomes. Cambridge, MA: Abt Associates; 1998.
- Eng C., Pedulla J., Eleazer GP, McCann R., Fox N. Program for All-Inclusive Care for the Elderly (PACE): an innovative model of integrated geriatric care and financing. J Am Geriatr Soc. 1997;45:223-232.[Web of Science][Medline]
[Order article via Infotrieve]
- Temkin-Greener H., Mukamel DB Predicting place of death in the Program of All-Inclusive Care for the Elderly (PACE): participant versus program characteristics. J Am Geriatr Soc. 2002;50:125-115.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- White AJ Evaluation of the Program of All-Inclusive Care for Elderly (PACE) Demonstration: The Effect of PACE on Costs to Medicare: A Comparison of Medicare Capitation Rates to Projected Costs in the Absence of PACE. Cambridge, MA: Abt Associates; 1998.
- Wieland D., Lamb VL, Sutton SR, et al. Hospitalization in the Program of All-Inclusive Care for the Elderly (PACE): rates, concomitants, and predictors. J Am Geriatr Soc. 2000;48:1373-1380.[Web of Science][Medline]
[Order article via Infotrieve]
- Hansen JC Commentary on part four. In: Blumenthal D, Moon M, Warshawsky M, Boccuti C, eds. Long-Term Care and Medicare Policy: Can We Improve the Continuity of Care? Washington, DC: National Academy of Social Insurance; 2006:175-177.
- Newcomer R., Miller R., Clay T., Fox P. Effects of the Medicare Alzheimer's disease demonstration on Medicare expenditures. Health Care Financ Rev. 1999;20:45-65.[Medline]
[Order article via Infotrieve]
- Jennings B. Hospice and Alzheimer's disease: a study in access and simple justice. Hastings Cent Rep. 2003 Mar-Apr;Suppl:S24-S30.
- National Hospice and Palliative Care Organization. 2002 NHPCO National Data Set Summary Report. Alexandria, VA: National Hospice and Palliative Care Organization; 2003.
- Gage B., Miller S., Coppola K., et al. Important questions for hospice in the next century (March 2000). http://aspe.hhs.gov/daltcp/reports/impques.htm. Accessed June 28, 2004.
- Mor V., Kidder D. Cost savings in hospice: final results of the national hospice study. Health Serv Res. 1985;20:407-421.[Web of Science][Medline]
[Order article via Infotrieve]
- National Hospice and Palliative Care Organization. JAMA publishes study examining end-of-life care in U.S.: highest levels of satisfaction provided by hospice care at home (1/06/04). Communications alert, January 6, 2004. http://www.nhpco.org/i4a/pages/Index.cfm?pageid=4178. Accessed January 6, 2005.
- National Hospice and Palliative Care Organization. Hospice costs Medicare less and patients often live longer new research shows, September 21, 2004. http://www.nhpco.org/i4a/pages/Index.cfm?pageid=4343. Accessed January 6, 2005.
American Journal of Alzheimer's Disease and Other Dementias®, Vol. 22, No. 5,
378-388 (2007)
DOI: 10.1177/1533317507305595

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