Preferences for place of care and place of death among informal caregivers of                 the terminally ill

Brazil, Kevin; Howell, Doris; Bédard, Michel; Krueger, Paul; Heidebrecht, Christine

doi:10.1191/0269216305pm1050oa

Cited by 172 publications

(155 citation statements)

References 20 publications

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“…Management of these symptoms represents an important target for quality improvement because shortness of breath or pain commonly prompt visits to the emergency department or admission to hospital at the end of life. [39][40][41] Our results also describe how patient characteristics are associated with particular symptom scores. Not surprisingly, comorbidity was associated with higher symptom scores.…”

Section: Sarcomamentioning

confidence: 88%

Symptom burden and performance status in a population‐based cohort of ambulatory cancer patients

Barbera

Seow

Howell

et al. 2010

Cancer

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196

128

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BACKGROUND. For ambulatory cancer patients, Ontario has standardized symptom and performance status assessment population-wide, using the Edmonton Symptom Assessment System (ESAS) and Palliative Performance Scale (PPS). In a broad cross-section of cancer outpatients, the authors describe the ESAS and PPS scores and their relation to patient characteristics. METHODS. This is a descriptive study using administrative healthcare data. RESULTS. The cohort included 45,118 and 23,802 patients' first ESAS and PPS, respectively. Fatigue was most prevalent (75%), and nausea least prevalent (25%) in the cohort. More than half of patients reported pain or shortness of breath; about half of those reported moderate to severe scores. Seventy-eight percent had stable performance status scores. On multivariate analysis, worse ESAS outcomes were consistently seen for women, those with comorbidity, and those with shorter survivals from assessment. Lung cancer patients had the worst burden of symptoms. CONCLUSIONS. This is the first study to report ESAS and PPS scores in a large, geographically based cohort with a full scope of cancer diagnoses, including patients seen earlier in the cancer trajectory (ie, treated for cure). In this ambulatory cancer population, the high prevalence of numerous symptoms parallels those reported in palliative populations and represents a target for improved clinical care. Differences in outcomes for subgroups require further investigation. This research sets the groundwork for future research on patient and provider outcomes using linked administrative healthcare data. Cancer 2010;116:5767-76.

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Section: Sarcomamentioning

confidence: 88%

Symptom burden and performance status in a population‐based cohort of ambulatory cancer patients

Barbera

Seow

Howell

et al. 2010

Cancer

Self Cite

196

128

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“…[5][6][7] Moreover, studies suggest that patients, families, and healthcare providers believe end-of-life care should be home-based and focused on ameliorating patient symptoms rather than hospital-based and focused on extending life through invasive approaches. [23][24][25][26][27] Furthermore, high-intensity care at the end of life for advanced cancer patients may contribute to wasteful spending in the United States. [28][29][30] There are several possible explanations for our finding of less high-intensity care in the VHA at the end of life.…”

Section: Discussionmentioning

confidence: 99%

End‐of‐life care for older cancer patients in the Veterans Health Administration versus the private sector

Keating

Landrum

Lamont

et al. 2010

Cancer

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SiC‐ and B4C‐filled NBR rubber composites were prepared with various volume fractions of filler by a conventional roll‐mill method. The morphological structures of the NBR–SiC and NBR–B4C composites were analyzed by scanning electron microscopy. The dependence of room‐temperature volume resistivity (ρv) on the concentration of filler in the two systems was studied. In addition, variation in the number of current carriers (n), mobility carriers (μ), dielectric constant (ε), and dielectric loss factor (tan δ) on filler concentration in the two systems were investigated in detail. The applicability of composites as negative temperature coefficient (NTCR) linear thermistors was studied by the dependence of volume resistivity on temperature. The resistivity showed negative temperature dependence and changed linearly with temperature parallel. The conduction mechanism of the conductivity of the two composites was analyzed in terms of the computed activation energy and hopping energy. Change in volume resistivity as a function of frequency for the two systems was also investigated. Finally, the dependence of volume resistivity on applied pressure and possible real applications of these composites as transducers in pressure sensors were also studied. © 2006 Wiley Periodicals, Inc. J Appl Polym Sci 103: 2158–2165, 2007

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“…19 Brazil and colleagues' Canadian study of 216 bereaved family caregivers revealed 77% had a preferred place of death (two thirds preferred the home), and they reported 68% of their deceased family members also had a preferred place of death. 20 A Netherlands survey of the general public revealed their conception of a good death often required that a decision be made by the person and/or family members on the place of death and dying. 21 Another study involving 1035 U.S. psychology students found they were willing and able to talk about death place, with Caucasian Americans more positive about home deaths than African Americans.…”

Section: Literature Reviewmentioning

confidence: 99%

The Preferred Place of Last Days: Results of a Representative Population-Based Public Survey

Wilson

Cohen

Deliens

et al. 2013

Journal of Palliative Medicine

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Background: The place of death is of considerable interest now, yet few studies have determined public preferences for place of end-of-life (EOL) care or final days of life. Objective: A survey was designed to answer three questions: (1) What are public preferences for the place of last days? (2) Is this place preference related to socio-demographic and other background characteristics? and (3) Is this place preference associated with specified previous death and dying experiences, the preparation of a living will or advance directive, or a viewpoint supportive of death hastening? Design: An experienced telephone survey company was commissioned to gain a representative populationbased sample and survey participants. In mid-2010, 1203 adults were surveyed in Alberta. Descriptive statistics and multinomial logistic regression were conducted. Results: This survey revealed 70.8% preferred to be at home near death; while 14.7% preferred a hospice/ palliative care facility, 7.0% a hospital, and 1.7% a nursing home; 5.7% had no stated preference. Marital status was the only predictor of place preference, with widowed persons more often indicating a preference for a hospital or hospice/palliative care facility. Conclusions: These findings suggest homes are the preferred EOL place now for the majority of Albertans, if not other citizens, while at the same time suggesting that marital and living arrangement realities temper EOL place choices and possibilities, with widows best realizing the need for assistance from others when dying. The widespread preference for home-based EOL care indicates public health interventions are needed to promote good home deaths.

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Preferences for place of care and place of death among informal caregivers of the terminally ill

Abstract: The ethic of self-control and choice for the care recipient must be balanced with consideration for the well being of the informal caregiver and responsiveness of the community service system.

Cited by 172 publications

References 20 publications

Symptom burden and performance status in a population‐based cohort of ambulatory cancer patients

Symptom burden and performance status in a population‐based cohort of ambulatory cancer patients

End‐of‐life care for older cancer patients in the Veterans Health Administration versus the private sector

The Preferred Place of Last Days: Results of a Representative Population-Based Public Survey

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