End-Stage Renal Disease
Objectives: To determine the functional trajectory in the last year of life in end-stage renal disease managed without dialysis.
Design: Longitudinal cohort study of functional status over time and toward death.
Setting: Three renal units in the United Kingdom.
Participants: Patients with Stage 5 chronic kidney disease managed conservatively (without dialysis).
Measurements: The main outcome measure was functional status, measured using the Karnofsky Performance Scale.
Results: Seventy-five participants (mean age 80.7, 62% response rate) recruited and followed up monthly for up to 2 years (median 8-month follow-up, range 1–23 months). Forty-nine (66%) died during follow-up. Those who died had similar distribution of age, ethnicity, primary renal pathology, and comorbidity as those still alive at study end. Analysis according to time before death revealed that functional status remained stable during the last year of life but declined steeply in the last month of life.
Conclusion: This distinctive renal trajectory, reported here for the first time, contrasts with that previously described in other conditions. This has important clinical implications—the steep functional decline indicates that healthcare services need to be rapidly responsive to changing needs in this population as function declines in the last months and weeks of life.
A trajectory is a pattern of change over time. The concept of distinct illness trajectories is well established in end-of-life care, especially in relation to trajectories of functional decline toward death. Mapping illness trajectories is a valuable way to depict how healthcare needs change over time and how interventions and services can best meet these changing needs. Three patterns of dying have been described: sudden death, expected death (with steady decline), and entry–reentry deaths (episodes of acute deterioration and recovery, superimposed on underlying decline). More recently, four trajectories of functional decline in the last year of life have been defined using U.S. Medicare claims data and interview data from older people. They included two trajectories (sudden death and organ failure) that correspond closely with the earlier three patterns (equivalent to the sudden death and entry–reentry patterns) and two other trajectories (terminal illness and frailty). Since their development, these four trajectories have been widely considered in the literature, including their application in different diseases. The organ failure trajectory was derived specifically from people with end-stage cardiac or respiratory disease; end-stage renal disease (ESRD) was not considered.
A different approach has been adopted using a postbereavement survey of next of kin to uncover these trajectories. Mean functional scores were determined for different disease groups; again, ESRD was not considered. This survey showed similar trajectories to the four trajectories, with a steady functional decline in cancer and with poorer initial levels of function (but slower decline) in cardiac and respiratory disease, diabetes mellitus, and stroke.
Together, these important studies have substantially advanced understanding of functional trajectories in the last year of life, but questions remain about conditions other than cancer, end-stage cardiac or respiratory disease, and frailty.
As the population ages, increasing numbers are developing ESRD. These are predominantly older and frailer people with multiple comorbidities, and (reflecting this) a growing proportion are choosing not to have dialysis. This study therefore aims to determine the functional trajectory in the last year of life for those with conservatively managed (nondialytic) ESRD and to extend the methods used to study these trajectories.
Abstract and Introduction
Abstract
Objectives: To determine the functional trajectory in the last year of life in end-stage renal disease managed without dialysis.
Design: Longitudinal cohort study of functional status over time and toward death.
Setting: Three renal units in the United Kingdom.
Participants: Patients with Stage 5 chronic kidney disease managed conservatively (without dialysis).
Measurements: The main outcome measure was functional status, measured using the Karnofsky Performance Scale.
Results: Seventy-five participants (mean age 80.7, 62% response rate) recruited and followed up monthly for up to 2 years (median 8-month follow-up, range 1–23 months). Forty-nine (66%) died during follow-up. Those who died had similar distribution of age, ethnicity, primary renal pathology, and comorbidity as those still alive at study end. Analysis according to time before death revealed that functional status remained stable during the last year of life but declined steeply in the last month of life.
Conclusion: This distinctive renal trajectory, reported here for the first time, contrasts with that previously described in other conditions. This has important clinical implications—the steep functional decline indicates that healthcare services need to be rapidly responsive to changing needs in this population as function declines in the last months and weeks of life.
Introduction
A trajectory is a pattern of change over time. The concept of distinct illness trajectories is well established in end-of-life care, especially in relation to trajectories of functional decline toward death. Mapping illness trajectories is a valuable way to depict how healthcare needs change over time and how interventions and services can best meet these changing needs. Three patterns of dying have been described: sudden death, expected death (with steady decline), and entry–reentry deaths (episodes of acute deterioration and recovery, superimposed on underlying decline). More recently, four trajectories of functional decline in the last year of life have been defined using U.S. Medicare claims data and interview data from older people. They included two trajectories (sudden death and organ failure) that correspond closely with the earlier three patterns (equivalent to the sudden death and entry–reentry patterns) and two other trajectories (terminal illness and frailty). Since their development, these four trajectories have been widely considered in the literature, including their application in different diseases. The organ failure trajectory was derived specifically from people with end-stage cardiac or respiratory disease; end-stage renal disease (ESRD) was not considered.
A different approach has been adopted using a postbereavement survey of next of kin to uncover these trajectories. Mean functional scores were determined for different disease groups; again, ESRD was not considered. This survey showed similar trajectories to the four trajectories, with a steady functional decline in cancer and with poorer initial levels of function (but slower decline) in cardiac and respiratory disease, diabetes mellitus, and stroke.
Together, these important studies have substantially advanced understanding of functional trajectories in the last year of life, but questions remain about conditions other than cancer, end-stage cardiac or respiratory disease, and frailty.
As the population ages, increasing numbers are developing ESRD. These are predominantly older and frailer people with multiple comorbidities, and (reflecting this) a growing proportion are choosing not to have dialysis. This study therefore aims to determine the functional trajectory in the last year of life for those with conservatively managed (nondialytic) ESRD and to extend the methods used to study these trajectories.
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