What exactly is long-term care? The definition given by the Washington DC-based Institute of Medicine in 1986 is a useful start: ¡§a variety of ongoing health and social services provided for individuals who need assistance on a continuing basis because of physical or mental disability. Services can be provided in an institution, the home or community, and include informal services provided by family or friends as well as formal services provided by professionals or agencies¡¨. This definition offers some hints as to why it has been difficult to establish long-term care as an integral part of social security.
The first of these lies in the difficulties encountered when identifying the line between public and private responsibility. It is easy to agree that care for an elderly woman who is alone, impoverished and frail should be a public responsibility. But what if her husband is alive, or there is money in the bank ¡V should she still qualify for public services? And, with most hands-on care for older people in the community provided by family members, would offering formal services cause families to withdraw their care?
Cost is clearly another concern, but formally establishing long-term care as an independent social security programme may not be as costly as some may fear. For a start, compared to healthcare, allocating long-term care resources should be easier because needs do not change as rapidly, and high-cost technology is not as important. Moreover, elderly individuals may prefer the care given by family or friends. Within Japan¡¦s first year of implementing its public long-term care insurance programme, expenditures have been more than 10% lower than projected.
Long-term care poses challenges to policymakers because these services are intertwined with the medical, social and housing sectors, with no clear criteria for delineating the responsibility of each.
With the global ageing of society, a new framework for the sharing of public/private responsibility is clearly needed. Equitable access to a standard package of long-term care services and ensuring their quality will be key responsibilities of government.
Measurement is therefore vital. There are three facets of quality in long-term care: compassionate care as given by family members, comfort as provided in the service industries, and professional competence of the staff. The last aspect has not received the attention it deserves. Those receiving long-term care are not in a state of steady and irreversible decline: the quality of life of individuals and their informal caregivers can be improved, accidents (such as falls) avoided, the rate of decline slowed down and hospitalisation avoided if appropriate care is provided.
To measure the professional competence of care, at least three sets of tools must be available: reliable and valid assessment instruments; a database of the assessment information; and statistical methods for evaluating quality. Regarding the first, the development of the Minimum Data Set in the US, which began to be developed in the 1980s, was a breakthrough towards monitoring and improving the quality of care by obtaining accurate information on the functional, cognitive and emotional status, and the care provided in institutional settings.
It grew out of the need for a uniform, comprehensive assessment system based on strict criteria of reliability and validity. The MDS has been mandated in virtually every nursing home in the US since 1991, and for Ontario¡¦s complex continuing care hospitals/units since 1996. It has been translated and validated in over 20 countries. Moreover, its use has improved the quality of care.
MDS assessments have enabled the development of quality indicators (QIs), like those developed by David Zimmerman et al. (see references), examining items like the incidence of new fractures, behavioural symptoms and cognitive impairment, as well as indicators like dehydration, changes in range of motion, weight loss and use of physical restraint or hypnosis.
A home care version (MDS-HC) and a mental health version (MDS-MH) of the MDS have been developed by interRAI, an international non-profit organisation of researchers and clinicians.
These instruments share core assessment items so that seamless care can be provided regardless of site, while also having specific items tailored to meet specific needs of each individual. For example, MDS-HC has items on informal support, ability to perform household chores, adherence to care programmes, etc.
The statistical methodology has been developed to monitor the quality of nursing homes in a given jurisdiction. However, comparisons among countries are problematic and adjusting for the differences in status of the newly admitted patients and the differences in the rates of decline of those already admitted, are needed. Large databases also have to be built. One study, based on MDS data from Denmark, Italy, Iceland, Japan and the US, shows that no one country excels in all the indicators used, even when assessing subgroups of patients and after adjusting for physical dependency and cognitive impairedness.
Five indicators were used for evaluating quality: falls by patients during the previous month; the presence of pressure ulcers; faecal incontinence, restraint use and social engagement and interaction with others. The US ranked first or second in prevalence of falls and restraint use in all sub-groups assessed, but it presented the lowest percentage of residents with little or no social engagement. Italy has a higher prevalence of faecal incontinence. Iceland and Japan had virtually no pressure ulcers.
More sophisticated quality indicators for institutional care and home care have recently been completed. For home care, the provisional results coming from Ontario Community Care Access Centres (CCACs), which act as single-point entry agencies providing access to community and institutional services, show that there are wide variations in practice patterns. For instance, there is a 2.6-fold difference in the rates of inadequate pain control among existing CCAC clients, with prevalence rates reaching a high of almost 47% of clients.
The methodology for evaluating quality in long-term care is now ready for use. If quality measures could be combined with reimbursement on a case-mix payment basis, the system would be even more effective. For example, the presence of pressure ulcers will lead to a higher payment to a nursing home because of the higher costs of care, but it would also lead to the facility being flagged for poor quality. In other words, using MDS data in such counter-balancing ways would help to provide more accurate assessments. Such systems are used in Ontario and have been validated in Sweden, Japan, UK, Finland and Spain, following the US experience, where Medicare uses it to calculate its per diem rate to nursing homes.
Policymakers have to be aware that the initial investment must be made to adequately train clinicians who will be actually using these instruments and administrators whose job it will be to analyse the databases. Long-term care deserves greater attention and the gap that divides health and human service professionals has yet to be bridged.
• Carpenter, G.I., Hirdes, J.P., Ribbe, M.W., Ikegami, N., Challis, D., Steel, K., Bernabei, R., Fries, B., "Targeting and quality of nursing home care. A five nation study", Aging Clinical and Experimental Research, 11(2), 1999.
• Ikegami, N., "Population ageing and impact on the organisation, delivery and financing of long-term care: An innovative approach from Japan", 2001, http://www.chera.ca/program.html
• Morris, J.N., Murphy, K., Nonemaker, S., "Long Term Care Facility Resident Assessment Instrument (RAI)", Health Care Financing Administration, 1995.
• A Caring World- The New Social Agenda, OECD, 1999.
• Zimmerman, D., Karon, S., Arling, G., Clark, B., Collins, E., Ross, R., Sainfort, F., "The development and testing of nursing home quality indicators", Health Care Financing Review, Vol. 16, 1995.
©OECD Observer No 229, November 2001