Family Perspectives on End-of-Life Care at the Last Place of Care

Teno, Joan M.; Clarridge, Brian; Casey, Virginia; Welch, Leslie; Wetle, Terrie; Shield, Renée; Mor, Vincent

doi:10.1001/jama.291.1.88

Cited by 1,329 publications

(1,099 citation statements)

References 18 publications

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“…Increasing use of chemotherapy at the end of life is associated with higher rates of in-hospital deaths and later admission to hospice, which are linked to lower quality end-of-life care. [72][73][74][75] When comparing male VA patients and Medicare patients with lung and colorectal cancer, VA patients were less likely to receive chemotherapy within 14 days of death or to be admitted to an ICU within 30 days of death, and they were similarly likely to have more than one emergency room visit within 30 days of death. 76 Among veterans who died in VA facilities, palliative care consults (67 % vs. 21 %, P < 0.001) and death in a dedicated palliative care, hospice unit, or intensive care unit were more common (47 % vs. 16 %, P < 0.001), and death in a nursing home was less common (10 % vs. 26 %, P < 0.001) than among veterans who died in non-VA facilities (all unadjusted results).…”

Section: Safetymentioning

confidence: 99%

Comparing VA and Non-VA Quality of Care: A Systematic Review

et al. 2016

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Section: Safetymentioning

confidence: 99%

Comparing VA and Non-VA Quality of Care: A Systematic Review

et al. 2016

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“…Ensuring high quality of hospice care for the dying, therefore, is essential. Bereaved family interviews are a common and useful way to gather information on hospice quality of care, as evidenced by their use in several influential studies to date (2)(3)(4)(5).…”

Section: Introductionmentioning

confidence: 99%

Timing of Survey Administration After Hospice Patient Death: Stability of Bereaved Respondents

DiBiasio

Clark

Gozalo

et al. 2015

Journal of Pain and Symptom Management

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Context-The Centers for Medicare & Medicaid Services have elected to include a bereaved family member survey in public reporting of hospice quality data as mandated in the Affordable Care Act. However, it is not known what timepoint after death offers the most reliable responses.Objectives-To examine the stability of bereaved family members' survey responses when administered three, six and nine months after hospice patient death.Methods-Bereaved family members from six geographically diverse hospices were interviewed three, six, and nine months after patient death. All respondents completed a core survey. Those whose family member died at home, in a free-standing inpatient unit, or in a nursing home also completed a site-specific module. Stability was based on top-box scoring of each item with kappa statistics, and multivariable regression models were used to assess directionality and predictors of change. To analyze the effects of grief, we assessed response stability among respondents at least one standard deviation from the mean change in grief between three and six months.Results-We had 1532 surveys (536 three-month surveys, 529 six-month surveys, and 467 ninemonth surveys) returned by 643 respondents (average age 61.7 years, 17.4% Black, 50.5% a child respondent) about hospice decedents (55.3% female, average age 78.6 years, 57.0% non-cancer, 40.0% at home.) The average kappa for core items between three and nine months was 0.54 (range: 0.42-0.74), 0.58 (0.41-0.69) for home-specific items, and 0.54 (0.39-0.63) for nursing home. Even among individuals demonstrating large grief changes, core items demonstrated moderate to high stability over time.Conclusion-Bereaved family member responses are stable between three and nine months after the death of the patient.

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“…Nevertheless, substantial proportions of patients dying in hospitals or nursing homes were shown to have received poor symptom control and insufficient emotional support [10][11][12][13][14][15]. The study to understand prognoses and preferences for outcomes and risks of treatments among bereaved relatives in the USA also concluded that many patients dying in hospitals have unmet needs concerning symptom relief and psychosocial care [11,16]. It is often suggested that enabling people to die at their place of preference, that is, at home, may contribute to their quality of dying.…”

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The last 3 days of life in three different care settings in The Netherlands

Veerbeek

Zuylen

Swart³

et al. 2007

Support Care Cancer

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Introduction Little is known about the characteristics of dying in different care settings, such as the hospital, the nursing home, or the home-care setting. Materials and methods We measured the burden of symptoms, medical and nursing interventions, and aspects of communication during the last 3 days of life within each of these settings. We included 239 of 321 patients (74%) who died in one of these settings in the southwest of The Netherlands, between November 2003 and February 2005. After the patient's death, a nurse filled in a questionnaire. Results Pain and shortness of breath were more severe in hospital patients as compared to nursing home and homecare patients, whereas incontinence was less severe in hospital patients. Several medical interventions, such as a syringe driver, vena punctures or lab tests, radiology or ECG, antibiotics, and drainage of body fluids were more often applied during the last 3 days of life to hospital patients than to nursing home and home-care patients. This also holds for the measurement of body temperature and blood pressure. In the hospital setting, the patient and the family were more often informed about the imminence of death of the patient than elsewhere. The general practitioner and other professional caregivers were less often informed about the imminence of death of hospital patients than of other patients. Discussion We conclude that pain and shortness of breath were more severe among hospital patients, whereas incontinence was more severe among nursing home and home-care patients. Hospital patients relatively often receive medical interventions and standard controls during the last 3 days of life. In hospital, communication about impending death seems to take place more often shortly before death.

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Family Perspectives on End-of-Life Care at the Last Place of Care

Abstract: Context Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home.

Cited by 1,329 publications

References 18 publications

Comparing VA and Non-VA Quality of Care: A Systematic Review

Comparing VA and Non-VA Quality of Care: A Systematic Review

Timing of Survey Administration After Hospice Patient Death: Stability of Bereaved Respondents

The last 3 days of life in three different care settings in The Netherlands

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