Review of existing methodologies to identify trajectories of decline in an

As discussed in the Introduction, the qualitative researchers Glaser and Strauss (1968) introduced the concept of dying as a temporal process that can be predicted by the health professional. However, graphical representations of the trajectory concept do not appear in the literature until 1988 with the graphs drawn in the Corbin monograph (Corbin J and Strauss A 1988) which provide hypothetical representations of the “work” required to manage illness over time. Up until 2001 there is only limited reference to this concept in the published literature when Joanne Lynn presented a set of graphs to illustrate her argument that the trajectory to death was different depending on the person’s underlying diagnosis. As stated previously, these graphs were

reproduced in a number of subsequent papers and policy documents but it was not until 2002 that June Lunney, working with Lynn and colleagues, published two papers with any empirical evidence for the existence of these trajectories.

As outlined in the previous chapter, there are two research papers that provide empirical evidence of the existence of the three trajectory profiles as proposed by Joanne Lynn (Lynn 2001). The first paper groups a population of

community living, elderly Americans sampled from a Medicare dataset into the five trajectories using Medicare claims data to determine the underlying

diagnosis (Lunney J, Lynn J et.al. 2002). The second paper uses a subset of a the Established Populations for Epidemiological Studies of the Elderly

(EPESE) that follows and measures the functional ability of elderly Americans with their diagnosis determined from death certificate data. The subjects who died whilst in the EPESE study became subject to the study by Lunney and colleagues (Lunney J, Lynn J et.al. 2003). These two papers form the starting point for the development of the method used in this PhD research.

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3.3.3 “Profiles of Older Medicare Decedents”

June Lunney, Joanne Lynn and Christopher Hogan (Journal of the American Geriatrics Society, 2002)

Data for the study by Lunney and colleagues (2002) came from a randomly selected 0.1% sample of Medicare (USA) claims over five years. Cost data for the last year of life was collected from 7,258 subjects over 65 years old who had died during this period. Cause of death was determined from the physician diagnosis code for each billing item. This methodology for determining cause of death had been validated against death certificate data in a previous study (Hogan W 1997).

Lunney and colleagues tested a four trajectory model. Subjects are to be identified as having one of four diagnostic definitions and were classified accordingly:

Group 1= ‘sudden’ death comprising subjects who were younger than 80 and

had less than $2,000 in total Medicare reimbursements;

Group2 = a plurality of physician claims noting a diagnosis of cancer;

Group 3 = were the organ system failure group with an in hospital claim or inpatient claim for congestive organ failure or chronic obstructive pulmonary disease;

Group 4 = labeled as ‘frailty’, had at least one Medicare claim in the last year of life associated with a diagnosis of stroke, Alzheimer’s Disease, dementia, acute delirium, Parkinson’s Disease, hip fracture, incontinence, pneumonia, dehydration, syncope, or leg cellulitis. The frailty grouping uses methodology from a previous study by (Haan M, Selby J et.al. 1997);

Group 5= remaining decedents that had not been classified into the preceding four groups were grouped as ‘other’. In this paper, the ‘other’ group was predominantly subjects with heart disease identified as the cause of death.

Page 116 of 242 The resulting groups differed in the measured demographic characteristics of age, sex, race, care delivery (hospice, hospital or nursing home), and Medicare expenditure.

3.3.4 “Patterns of Functional Decline at the End of Life”

June Lunney, Joanne Lynn, Daniel Foley, Steven Lipson and Jack Guralnik (Journal of the American Medical Association, 2003)

The 4,190 subjects for this (2003) study were the deceased cohort of the

EPESE study of 14,456 community living, 65 years and older persons recruited over six years from 1981. The subjects were interviewed at baseline and had had a follow-up interview in the 12 months preceding their death. The study collected demographic information followed by, interview (either face to face or phone), in which the subject or proxy was asked if the subject needed help or if they were unable to perform seven measures of (Activities of Daily Living) ADL dependency: walking across a small room, bathing, grooming, dressing, eating, transfers, and using the toilet. Other questions on physical function included ability to walk a half mile, stair climbing or to do heavy housework. Subjects were also questioned on changes to health such as diagnoses changes, hospitalisations, and nursing home stay. The subject data were grouped according to the months between the interview and their death. Function was then derived from the mean number of ADL dependencies for each monthly cohort (Figure 2.17 on page 90).

The subjects were grouped into four categories, corresponding to the theoretical ‘trajectories of decline’, based on information from the death certificate as well as information given in the interview. Any decedent with a diagnosis of cancer as the immediate or underlying cause of death was placed into the cancer group. The next grouping included decedents with any

diagnosis in any field on the death certificate of congestive heart failure or chronic lung disease. The frailty group comprised those decedents remaining unclassified by cancer, heart or lung failure but who had reported a nursing home stay during any follow-up interview. The sudden death group had no

Page 117 of 242 cancer, heart or lung failure diagnosis and no nursing home stay. Any

remaining, unclassified subjects comprised the ‘other’ group.

After grouping the subjects, analysis of variance (with a Bonferroni correction) was undertaken to describe the demographic characteristics of the groups. A logistic regression model was developed to examine the relationship between group membership and the degree of functional decline before death, adjusting for the effects of age, sex, race, marital status and the time period between the measure of function (interview) and death.

All groups demonstrated a mean decline in function in the year before death. The frailty group had the greatest rate of decline and the highest levels of functional dependency, then in deceasing order the cancer group, the organ failure group and the sudden group had the least change.

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