Restricting Symptoms in the Last Year of Life

Chaudhry, Sarwat I.; Murphy, Terrence E.; Gahbauer, Evelyne A.; Sussman, L. Scott; Allore, Heather G.; Gill, Thomas M.

doi:10.1001/jamainternmed.2013.8732

Cited by 64 publications

(74 citation statements)

References 28 publications

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“…30–33 Third, immediately after each “yes” response to a specific symptom or problem, participants were asked, “Did this cause you to stay in bed for at least half a day or to cut down on your usual activities?” During pilot testing among 20 persons, we found that the test-retest reliability (mean time between assessments, 4.1 days) of this protocol was high, with of κ 0.90 for the presence or absence of restricted activity and κ of 0.75 or greater for the presence or absence of all restricting symptoms. 10 …”

Section: Methodsmentioning

confidence: 99%

“…Prior studies of distressing symptoms at the end of life have focused on specific subgroups, such as patients with cancer, 17 have lacked data on hospice, 18 have not had access to detailed longitudinal data prior to hospice, 19 or have focused on only a single symptom such as pain. 20 In an earlier study, 10 we used a longitudinal cohort design to study symptom burden in the last year of life. To our knowledge, comparable longitudinal data do not exist for patients before and after admission to hospice.…”

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confidence: 99%

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Restricting Symptoms Before and After Admission to Hospice

Cheraghlou

Gahbauer

Stabenau

et al. 2016

The American Journal of Medicine

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Background Prior work has shown that symptoms leading to restrictions in daily activities are common at the end of life. Hospice is a Medicare benefit designed to alleviate distressing symptoms in the last 6 months of life. The effect of hospice on the burden of such symptoms is uncertain. Methods From an ongoing cohort study of 754 community-dwelling older persons, aged 70 years or older, we evaluated 241 participants who were admitted to hospice from March 1998 to December 2013. A set of 15 physical and psychological symptoms leading to restricted activity (i.e. cut down on usual activities or spend at least ½ day in bed) were ascertained during monthly telephone interviews in the year before and three months after hospice admission. Results The prevalence and mean number of restricting symptoms increased progressively until about 2 months prior to hospice admission, before increasing precipitously to a peak around the time of hospice admission. After the start of hospice, both the prevalence and the mean number of restricting symptoms dropped markedly. For several symptoms deemed most amenable to hospice treatment, including depression and anxiety, the prevalence dropped to levels comparable to or lower than those observed 12 months before the start of hospice. The trends observed in symptom prevalence and mean number of symptoms before and after hospice did not differ appreciably according to hospice admission diagnosis or sex. The median duration of hospice (before death) was only 15 days. Conclusion The burden of restricting symptoms increases progressively several months before the start of hospice, peaks around the time of hospice admission, and decreases substantially after the start of hospice. These results, coupled with the short duration of hospice, suggest that earlier referral to hospice may help to alleviate the burden of distressing symptoms at the end-of-life.

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Section: Methodsmentioning

confidence: 99%

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Restricting Symptoms Before and After Admission to Hospice

Cheraghlou

Gahbauer

Stabenau

et al. 2016

The American Journal of Medicine

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“…Restricting symptoms are common in the last year of life, particularly in elderly patients with chronic conditions. Chaudhry et al found that while 27% of patients had physical or psychological symptoms leading to restrictions in daily activities 5 months prior to death, this rose to >55% in the month prior to death (66). Therefore, addressing symptoms should always be a part of the treatment plan, regardless of the futility of TAVR, and should be expected in this population.…”

Section: Introductionmentioning

confidence: 99%

Futility, Benefit, and Transcatheter Aortic Valve Replacement

Lindman

Alexander

O’Gara

et al. 2014

JACC: Cardiovascular Interventions

183

129

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Transcatheter aortic valve replacement (TAVR) is a transformative innovation that provides treatment for high or prohibitive surgical risk patients with symptomatic severe aortic stenosis (AS) who were previously either not referred for or denied operative intervention. Trials have demonstrated improvements in survival and symptoms after TAVR compared to medical therapy, however there remains a sizable group of patients who die or lack improvement in quality of life soon after TAVR. This raises important questions about the need to identify and acknowledge the possibility of futility in some patients considered for TAVR. In this very elderly population, a number of factors in addition to traditional risk stratification need to be considered including multimorbidity, disability, frailty, and cognition in order to assess the anticipated benefit of TAVR. Consideration by a multidisciplinary heart valve team with broad areas of expertise is critical for assessing likely benefit from TAVR. Moreover, these complicated decisions should take place with clear communication around desired health outcomes on behalf of the patient and provider. The decision that treatment with TAVR is futile should include alternative plans to optimize the patient's health state or, in some cases, discussions related to end of life care. We review issues to be considered when making and communicating these difficult decisions.

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“…Although it is possible that late admission to hospice was due to prior receipt of palliative care, the high burden of restricting symptoms during the last year of life among decedents in the same cohort supports the possibility of unmet palliative care needs. 51 Third, because they were not included in the current study, we cannot comment on the burden of disability and potential unmet needs at the end of life among decedents who had not been admitted to hospice. Additional research is needed to evaluate the relationship between the presence and burden of disability at the end of life and the receipt of palliative care, hospice care, or both.…”

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Functional Trajectories in the Year Before Hospice

Stabenau

Morrison

Gahbauer

et al. 2015

The Annals of Family Medicine

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PURPOSE We undertook a study to identify distinct functional trajectories in the year before hospice, to determine how patients with these trajectories differ according to demographic characteristics and hospice diagnosis, and to evaluate the association between these trajectories and subsequent outcomes.METHODS From an ongoing cohort study of 754 community-living persons aged 70 years or older, we evaluated data on 213 persons who were subsequently enrolled in hospice from March 1998 to December 2011. Disability in 13 basic, instrumental, and mobility activities was assessed during monthly telephone interviews through June 2012. RESULTSIn the year before hospice, we identified 5 clinically distinct functional trajectories, representing worsening cumulative burden of disability: late decline (10.8%), accelerated (10.8%), moderate (21.1%), progressively severe (24.9%), and persistently severe (32.4%). Participants with a cancer diagnosis (34.7%) had the most favorable functional trajectories (ie, lowest burden of disability), whereas those with neurodegenerative disease (21.1%) had the worst. Median survival in hospice was only 14 days and did not differ significantly by functional trajectory. Compared with participants in the persistently severe trajectory, those in the moderate trajectory had the highest likelihood of surviving and being independent in at least 1 activity in the month after hospice admission (adjusted odds ratio = 5.5; 95% CI, 1.9-35.9). CONCLUSIONSThe course of disability in the year before hospice differs greatly among older persons but is particularly poor among those with neurodegenerative disease. Late admission to hospice (as shown by the short survival), coupled with high levels of severe disability before hospice, highlight potential unmet palliative care needs for many older persons at the end of life. INTRODUCTIONO lder persons with persistent levels of severe disability have high mortality and substantial care needs.1,2 One option for addressing these needs is palliative care, a specialized medical and interdisciplinary care approach that aims to alleviate stress, pain, and other distressing symptoms among those with serious illness, independent of prognosis or treatment being pursued, with the goal of optimizing quality of life for both patients and families.3 Hospice care, a similar approach, is a second option. In the United States, hospice is largely defined by the Medicare Hospice Benefit, which restricts services to persons who have an expected survival of 6 months or less. Because hospice also limits the pursuit of curative and most life-prolonging therapies, it is often considered only for patients who have end-stage, terminal conditions, or when death is imminent. [4][5][6][7][8][9][10][11][12][13][14][15] Palliative care is often confused with hospice and can be difficult to access. 16 Consequently, many older persons do not receive hospice or palliative care near the end of life, 17,18 which can place a high burden on caregivers 19 and result in suffering. 20Alt...

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Restricting Symptoms in the Last Year of Life

Cited by 64 publications

References 28 publications

Restricting Symptoms Before and After Admission to Hospice

Restricting Symptoms Before and After Admission to Hospice

Futility, Benefit, and Transcatheter Aortic Valve Replacement

Functional Trajectories in the Year Before Hospice

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