Home Health Care in Massachusetts:
The Impact of Current Reductions in Medicare Spending on Lay Caregivers

Rosanna DeMarco PhD, RN, ACRN & Lyn O’Brien, MS, RN, ANP(Northeastern University, Bouve College of Health Sciences, School of Nursing; Ad Hoc Committee to Defend Health Care Research Group; MNA Community Health Task Force, Safe Care Campaign)

Background

In May of 1998, a multidisciplinary group of professionals gathered to discuss the effect of market-driven health system models on health care. The group was composed of physicians, nurses, psychotherapists, social workers, and students and represented the common interests of the Ad Hoc Committee to Defend Health Care. This group has committed to addressing the displacement of value driven health care by profit making philosophies and missions in a majority of health provider delivery systems. The group used their collective expertise to create a research agenda that was timely, significant, and compelling. The consensus of the group was that one of the most critical areas of care undergoing deep fiscal cuts was that of home health care. In September 1998, MNA (Massachusetts Nurses Association, Safe Care Campaign) joined the group to pursue a quest to understand the same issue. Of specific concern was the reported increase of lay caregiver responsibility when providing care to patients at home that was non-negotiable and fiscally driven by constraints imposed on community health agencies through the Balance Budget Act of 1997. A reesearch question, design, method, and plan for analysis was developed based on previous research (Chou, 1997; Fisher, 1998; Grassel, 1998; Gwyther, 1998; Hamon, 1996; Knox, 1998; Sanchez, 1998; & Vrabec, 1997).

The research question was, "What is the experience of lay caregivers who coordinate and provide comprehensive nursing, medical and rehabilitation related care at home?" A pilot study began in the Fall of 1998 and 18 caregivers representing all regions of the State were interviewed at their homes and audio-taped. A sub-set of caregivers (n=7) were interviewed via phone audio-taping. This group contacted us directly and insisted on being interviewed even though they were not "lay caregivers". In each of these cases, the caregivers were active or retired nurses who answered an ad placed in the Massachusetts Nurse in the Fall of 1998 to be involved with the study. They wanted to be interviewed to give a professional perspective on the home care experiences as a "caregiver" family relative. The majority of the patients who were being cared for by all caregivers were receiving Medicare or an affordable supplement to Medicare (88%, n =23).

Findings

Transcribed raw data were content analyzed by the Ad Hoc to Defend Health Care’s Research group using a group validation process (Miles & Huberman, 1984). Preliminary findings are (1) Medicare beneficiaries who have more chronic or complex conditions are transferred without negotiation to family members or friends for complex care provision, (2) home care services are experienced as "fragmented", (3) licensed home care providers are increasingly more "rushed" with less quality time to discuss patient care needs, (4) personal finances are used to "fill in the gaps" for services not provided, i.e., transportation, medication, respite services, (5) family 24 hour responsibility was identified as a motivator and a burden in caring for elderly parents and significant others, i.e., change of job status from full to part-time, increased absence at work, and physical/mental stress and (6) with few exceptions, the primary care giver was female and identified her involvement based on a filial responsibility to care for a parent or in-law.

Many individuals expressed the interview experience as "therapeutic" in that they could talk openly about their experience and not feel isolated or unheard. In fact, at this writing the research group continues to receive interview requests by "word of mouth". We have been reluctant to advertise further because of the need for fiscal support to sustain the time and resource conditions of the study.

Although these data are informative, the researchers acknowledge several limitations. Home Health and Home Care agencies although supportive of the original study proposal were understandably reluctant to refer client caregivers to be interviewed because they felt they would be implicated as creating the caregiver and patient burden based on service decisions they were forced to take to survive fiscally. In addition, there was a lack of (1) quantitative data that specifically tracks discharge status prior to and after home care admission, (2) randomization of clients/caregivers from an information source that precedes home care referral or is separate from homecare provision of service; and (3) diversity in the population interviewed.

The research group is now pursuing research grant moneys to address the limitations of initial study and to assist the Commonwealth of Massachusetts Department of Health and Human Services to address the needs of the elderly in communities. To consider how specific community sectors can plan and use capitation money to provide community specific services to the elderly at home is highly needed based on data driven accuracy.

Implications and Importance

This research project is invaluable in helping formulate a response to health care consumers in Massachusetts who have expressed frustration with current home care services and the projected decrease in services. It is also expected that this study and future studies will need to delineate economic trends, which impact on Massachusetts’s public policy. These trends may include: personal expenses, economic employment implications (decreased work productivity and job loss), and variables which suggest the indicators for Medicaid "spend-down" and predicted "institutionalization" (Preventable Hospitalization in Massachusetts, 1994; Improving Primary Care: Using Preventable Hospitalization as an Approach, 1995). It is important that elderly recipients of health care services who are not getting necessary home health services know that public policy makers are advancing their understanding of the scope of the problem to develop solutions.

What is important to us as nurses is that in Massachusetts nurses with other clinicians have moved away from a position of dissonance to an active voice through research. "Real" time and "research" time are often not the same. Timely responses supported by money available to answer questions based on the value of caring for clients is an imperative. We are grateful to the support received by the Massachusetts Nurses Association, Community Health Task Force, Safe Care Campaign, the Ad Hoc Committee to Defend Health Care, and our community colleagues who have volunteered in this effort from the beginning of this process [Janis Anderson PhD (Psychologist), Susan Chipman PhD (Psychologist), Leslie Corin, LICSW (Social Work), Donna Mae

Donahue MS, RN (Nursing, Massachusetts Nurses Association), Emil Frei, MD (Medicine/Cancer Researcher, Dana Farber), Patricia Haywood MS, RN, CS (Mental Health Clinical Specialist), Barney Hoop PhD (Physicist/Researcher), Christine Johnsen, RN, MPH (Graduate Student, Bouve College of Health Sciences, School of Nursing), Marcia Lynch, DNSc, RN (Nurse Researcher/Faculty, Northeastern University), Daniel McNally, MBA, CHE, (Health Services Administrator), Catherine Noonan, RN (Graduate Student, Bouve College of Health Sciences, School of Nursing), Steffie Woolhandler, MD (Community Medicine, Cambridge Hospital)].

References

Chou, K.R. (1997). A psychometric assessment of caregiver burden: a cross-cultural study. Journal of Pediatric Nursing, 12(6), 352-362.

Fisher, I. (1998, June 7). Families providing complex medical care, tubes and all. The New York Times, pp. 1, 30.

Grassel, E. (1998). Home care of demented and non-demented patients. Health and burden of caregivers. Gerontologic Geriatrics, 3(1), 57-62.

Gwyther, L.P. (1998). Social issues of the Alzheimer’s patient and family. American Journal of Medicine, 104(4A), 17S-21S.

Hamon, R. (1996) Filial responsibility. In National Council of Family

Relations (Ed.), Families and Aging 2001 (p.p 2-3). Minneapolis, MN: NCFR.

Improving primary care: Using preventable hospitalization as an approach. (1995). Massachusetts Rate Setting Commission, Executive Office of Health and Human Services.

Knox, R.A. (1998, July 20). The toll caring takes. The Boston Globe. pp. C1,C3.

Miles, M., & Huberman, A. (1984). Qualitative Data Analysis: A Source Book for New Methods. BeverlyHills, CA: Sage.

Preventable Hospitalization in Massachusetts (1994). Massachusetts Rate Setting Commission, Executive Office of Health and Human Services.

Sanchez, M.C. (1998, July 4). Cuts threaten community lifelines. The Boston Globe. pp. B1, B6.

Vrabec, N. J. (1997). Literature review of social support and caregiver burden, 1980 to 1995. Image, 29(4), 383-388.