Standardized comprehensive assessment in palliative care The RAI-Palliative Care (PC)

Introduction

It is now widely recognized that comprehensive assessment is an important component of normal practice within an array of health service settings – including nursing homes (Steel, Sherwood, and Ribbe, 1997), psychiatry (Glover 2000), and home care (Morris et al, QQQ). Not only is comprehensive assessment necessary at intake, but so too at the discharge or transfer planning stage (Naylor et al., 1994).

A number of interrelated factors have contributed to the need for comprehensive assessment in health care delivery. Although an illusive term to define, it is now recognized that “health” is more than just the “absence of disease” (Ottawa Charter For Health Promotion, 1986). Health is now viewed as a “state of complete physical, mental, and social well-being.” The changing definition of health is partly a response to the increase in degenerative diseases. With the shift from acute to more long term chronic conditions, individuals often experience ongoing medical conditions that are accompanied by a host of care needs both medical and non-medical. A hospital patient with diabetes may present with elevated ongoing blood sugars and retinopathy. An elderly home care client recovering from stroke may experience impairments with his/her activities of daily living, pain, and problems with social isolation. Chronic illnesses often lead to a “cascade of increasing needs”. Hence, an important prerequisite for quality care is the assessment and ongoing monitoring of patient needs.

In addition, the scope and range of health services patients/ clients may receive has grown at an exponential rate. Over the years, a larger arsenal of new diagnostic procedures, treatment and rehabilitation techniques, and medications have been introduced into health care. Not only are there new services and procedures but so too has the list of new service providers grown (Shah, 1998:413- 415). Hence, a greater number and diversity of care providers providing a greater range of services may enter into the therapeutic process.

Finally, the “settings” for health care delivery have also expanded. Whereas health care once was primarily received in physician’s offices and acute care hospitals, today service delivery settings have multiplied to include ambulatory care such as day surgery, home care, chronic care, both institutional and community- based rehabilitation.

Just as the definition of health has changed so to has the conceptualization of care at the end-of-life. Rather than providing aggressive, intrusive medical interventions many patients prefer to meet death on their own terms with dignity rather than endure prolonged suffering through life extending treatments. It is not surprising then that there have been calls within Hospice & Palliative Care for comprehensive assessment. Rather than focusing upon life saving measures, the goal of such care is to provide relief of pain and other physical symptoms by addressing the patient’s physical, psychosocial, and spiritual needs. Both Health Canada and the Canadian Palliative Care Association have recognized the need for a client-level information system to facilitate integrated care at end-of-life. As noted in several reports, having a common assessment instrument with standardized definitions and data elements for end-of-life care “would facilitate comparisons between provinces, jurisdictions, info sharing about programs, best practices.” (Health Canada, 1997).

The MDS/RAI – An integrated health information system

The Resident Assessment Instruments (RAI) are comprehensive assessment protocols developed for various health care sectors (long term care, home care, mental health, etc) that are used widely around the world (see Table One). InterRAI is a not-forprofit group of international clinicians and researchers dedicated to the development of standardized, comprehensive health assessment instruments. Canada has two interRAI representatives – John Hirdes at the University of Waterloo and Katherine Berg at McGill University.

The MDS 2.0 is already mandated for use in Ontario. The Ministry of Health and Long Term Care requests that all residents occupying a chronic care bed in the Province of Ontario be assessed with the MDS 2.0 upon admission and discharge. In addition, quarterly assessments are completed on each resident for their entire length of stay at the facility. The MDS 2.0 therefore constitutes part of normal practice in chronic care facilities.

Each assessment involves a person-specific assessment in which data elements are recorded on a Minimum Data Set (MDS) form. The data collection form focuses upon a number of domains of importance for physical, mental and social health from the individual data elements or variables. Each particular item identifies patients/residents/ clients at imminent risk for decline or who at least are warranting further evaluation for specific problems (for example, depressed mood, incontinence, caregiver burden). In addition, a number of outcome scales are embedded within the various MDS/RAI instruments. Examples include a cognitive performance scale, social engagement scale, activities of daily living, and the MDS-depression rating scale. Taken together, the collected information based upon the RAI/MDS can be used to assist care planning and placement decision support, outcomes assessment and evaluation, quality of care assessment, and case-mix based funding (see for example Hirdes, et al. 1999).

The MDS represents a new generation of assessment instruments that can serve multiple applications for multiple audiences (Hirdes et al., 1999). Nurses and other health service providers can use the MDS to assist with care plans and track the status of clients in several domains (e.g., activities of daily living, depressive mood, social engagement, and overall risk management). Quality managers, can use MDS data to support benchmarking and quality improvement. Governments can use MDS data to establish equitable funding formula that reimburse long-term / chronic care facilities on the basis of the needs of residents. Finally, consumers and significant others may consult quality reports (if available to the public) based upon MDS data to evaluate the performance of the facilities providing care to their relatives.

The RAI-Palliative Care

The RAI-Palliative Care (RAI-PC) is a new addition to the MDS/RAI family of instruments. The current assessment form (three pages) contains 163 data items grouped into ten key care domains (see Table 2). Where possible, individual items were derived from existing MDS/RAI instruments (Steel, et al., forthcoming). New items of particular importance to End-of-Life and Palliative Care, that are not found in other MDS/RAI instruments, were added to the form. The RAI-PC is meant to be used in both institutional and community-based settings. It can be used as a “stand-alone” assessment or used as an “add-on” module in conjunction with other existing MDS/RAI assessments (for example, a client receiving palliative care in the community may be assessed with both the RAI-Home Care and RAI-Palliative Care). Several of the original MDS/RAI outcome scales are contained with the assessment instrument. In addition, a new MDS-Pain Scale has been embedded within the RAI-PC. This new scale has been validated against the VAS or visual analogue scale (paper forthcoming by Fries et al.).

How can standardized, comprehensive assessment assist with quality care planning?

One way the RAI-PC (or for that matter any MDS/RAI instrument) can be used to assist care planning while placing unnecessary burden upon both staff and clients is to incorporate the instrument into the normal intake process. Upon entering into service, all patients receive some form of assessment which is recorded on an intake form. Such standardized information can be used to both detect and prioritize service needs. For example, published research has demonstrated the utility of the nursing home instrument or MDS 2.0 for detecting unmet medical needs among various patient groups. Bernabi et al. (1998) showed that about one third of US nursing home residents experiencing daily pain related to cancer received no analgesia by World Health Organization standards. Bernabi and his colleagues examined data collected on over 13,000 cancer patients aged 65 and older, discharged from US acute care hospitals to nursing home facilities from 1992 to 1995.

Within the sample, 26% of patients with daily pain received no analgesia, not even an aspirin or acetaminophen. The risk of inadequate pain treatment was associated with increasing age and minority group status. By providing representative data from the MDS linked to prescription drug data these researchers were able to identify the need to modify care practice patterns in the US.

Summary

Since a number of different site-specific versions of the RAI currently exist, when used together, they contribute to an integrated health information system. As noted previously, the MDS series of instruments are designed to articulate with each other in a way that they comprise an integrated health information system. Whenever instruments measure the same concept, every effort is made to measure it in the same way across sectors. Hence “pain” and “depression” are measured the same way (using the same questions, the same answer responses) in the chronic care version (the MDS 2.0), the home care version, and/or the palliative care versions. Care providers can therefore track changes in the clinical and psychosocial status of clients as they move through the health service system. The ability of information systems to track clients across health care sectors is of particular importance to end-of-life care. During the course of their illness, such patients may transverse between the home to acute care to palliative care/hospice settings. The MDS-series of instruments have the potential to contribute to a “seamless” information health system.