{"id":"https://openalex.org/W1990906665","doi":"https://doi.org/10.1089/1096621041349482","title":"Increased Family Reports of Pain or Distress in Dying Oregonians: 1996 to 2002","display_name":"Increased Family Reports of Pain or Distress in Dying Oregonians: 1996 to 2002","publication_year":2004,"publication_date":"2004-06-01","ids":{"openalex":"https://openalex.org/W1990906665","doi":"https://doi.org/10.1089/1096621041349482","mag":"1990906665","pmid":"https://pubmed.ncbi.nlm.nih.gov/15265353"},"language":"en","primary_location":{"id":"doi:10.1089/1096621041349482","doi":"https://doi.org/10.1089/1096621041349482","is_oa":false,"landing_page_url":"https://doi.org/10.1089/1096621041349482","pdf_url":null,"source":{"id":"https://openalex.org/S155536936","display_name":"Journal of Palliative Medicine","issn_l":"1096-6218","issn":["1096-6218","1557-7740"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320443","host_organization_name":"Mary Ann Liebert, Inc.","host_organization_lineage":["https://openalex.org/P4310320443","https://openalex.org/P4310320017"],"host_organization_lineage_names":["Mary Ann Liebert, Inc.","SAGE Publishing"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Palliative Medicine","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5046773892","display_name":"Erik K. Fromme","orcid":"https://orcid.org/0000-0002-6731-2338","observed_orcids":["https://orcid.org/0000-0002-6731-2338"]},"institutions":[{"id":"https://openalex.org/I165690674","display_name":"Oregon Health & Science University","ror":"https://ror.org/009avj582","country_code":"US","type":"education","lineage":["https://openalex.org/I165690674"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Erik K. Fromme","raw_affiliation_strings":["Division of General Internal Medicine, School of Medicine, Palliative Care Research Program, Center for Ethics in Health Care, Oregon Health & Science University, Portland, Oregon","Division of General Internal Medicine, School of Medicine, Palliative Care Research Program, Center for Ethics in Health Care, Oregon Health and Science University, Portland, Oregon 97239, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of General Internal Medicine, School of Medicine, Palliative Care Research Program, Center for Ethics in Health Care, Oregon Health & Science University, Portland, Oregon","institution_ids":["https://openalex.org/I165690674"]},{"raw_affiliation_string":"Division of General Internal Medicine, School of Medicine, Palliative Care Research Program, Center for Ethics in Health Care, Oregon Health and Science University, Portland, Oregon 97239, USA","institution_ids":["https://openalex.org/I165690674"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5087358770","display_name":"Virginia P. Tilden","orcid":"https://orcid.org/0000-0001-8111-6766","observed_orcids":["https://orcid.org/0000-0001-8111-6766"]},"institutions":[{"id":"https://openalex.org/I165690674","display_name":"Oregon Health & Science University","ror":"https://ror.org/009avj582","country_code":"US","type":"education","lineage":["https://openalex.org/I165690674"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Virginia P. Tilden","raw_affiliation_strings":["School of Nursing, Center for Ethics in Health Care, Oregon Health & Science University, Portland, Oregon"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"School of Nursing, Center for Ethics in Health Care, Oregon Health & Science University, Portland, Oregon","institution_ids":["https://openalex.org/I165690674"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5042051386","display_name":"Linda L. Drach","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I165690674","display_name":"Oregon Health & Science University","ror":"https://ror.org/009avj582","country_code":"US","type":"education","lineage":["https://openalex.org/I165690674"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Linda L. Drach","raw_affiliation_strings":["School of Nursing, Center for Ethics in Health Care, Oregon Health & Science University, Portland, Oregon"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"School of Nursing, Center for Ethics in Health Care, Oregon Health & Science University, Portland, Oregon","institution_ids":["https://openalex.org/I165690674"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5112158232","display_name":"Susan W. Tolle","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I165690674","display_name":"Oregon Health & Science University","ror":"https://ror.org/009avj582","country_code":"US","type":"education","lineage":["https://openalex.org/I165690674"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Susan W. Tolle","raw_affiliation_strings":["School of Medicine, Center for Ethics in Health Care, Oregon Health & Science University, Portland, Oregon"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"School of Medicine, Center for Ethics in Health Care, Oregon Health & Science University, Portland, Oregon","institution_ids":["https://openalex.org/I165690674"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":[],"corresponding_institution_ids":["https://openalex.org/I165690674"],"apc_list":null,"apc_paid":null,"fwci":1.2867,"has_fulltext":false,"cited_by_count":17,"citation_normalized_percentile":{"value":0.80281601,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":96},"biblio":{"volume":"7","issue":"3","first_page":"431","last_page":"442"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10177","display_name":"Palliative Care and End-of-Life Issues","score":0.9678000211715698,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10177","display_name":"Palliative Care and End-of-Life Issues","score":0.9678000211715698,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T13340","display_name":"Palliative and Oncologic Care","score":0.01269999984651804,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11199","display_name":"Pain Management and Opioid Use","score":0.00860000029206276,"subfield":{"id":"https://openalex.org/subfields/2703","display_name":"Anesthesiology and Pain Medicine"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/end-of-life-pain","display_name":"end-of-life pain","score":0.8510000109672546},{"id":"https://openalex.org/keywords/family-caregivers","display_name":"family caregivers","score":0.8100000023841858},{"id":"https://openalex.org/keywords/last-week-of-life","display_name":"last week of life","score":0.875},{"id":"https://openalex.org/keywords/physician-assisted-suicide","display_name":"physician-assisted suicide","score":0.675000011920929},{"id":"https://openalex.org/keywords/oregon-death-with-dignity-act","display_name":"Oregon Death with Dignity Act","score":0.8100000023841858},{"id":"https://openalex.org/keywords/hospice-care","display_name":"hospice care","score":0.5299999713897705},{"id":"https://openalex.org/keywords/nursing-home-care","display_name":"nursing home care","score":0.7940000295639038},{"id":"https://openalex.org/keywords/symptom-management","display_name":"symptom management","score":0.8949999809265137},{"id":"https://openalex.org/keywords/temporal-trends","display_name":"temporal trends","score":0.45500001311302185},{"id":"https://openalex.org/keywords/oregon","display_name":"Oregon","score":0.5460000038146973}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.8721026182174683},{"id":"https://openalex.org/C139265228","wikidata":"https://www.wikidata.org/wiki/Q5283089","display_name":"Distress","level":2,"score":0.6877602338790894},{"id":"https://openalex.org/C156957248","wikidata":"https://www.wikidata.org/wiki/Q1862216","display_name":"Odds ratio","level":2,"score":0.5959721207618713},{"id":"https://openalex.org/C44249647","wikidata":"https://www.wikidata.org/wiki/Q208498","display_name":"Confidence interval","level":2,"score":0.5688401460647583},{"id":"https://openalex.org/C2777512617","wikidata":"https://www.wikidata.org/wiki/Q1783605","display_name":"Staffing","level":2,"score":0.4739511013031006},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.43959230184555054},{"id":"https://openalex.org/C149923435","wikidata":"https://www.wikidata.org/wiki/Q37732","display_name":"Demography","level":1,"score":0.43803712725639343},{"id":"https://openalex.org/C2994186709","wikidata":"https://www.wikidata.org/wiki/Q29483","display_name":"Palliative care","level":2,"score":0.4193653166294098},{"id":"https://openalex.org/C143095724","wikidata":"https://www.wikidata.org/wiki/Q515895","display_name":"Odds","level":3,"score":0.4171191453933716},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.37213683128356934},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.35277315974235535},{"id":"https://openalex.org/C151956035","wikidata":"https://www.wikidata.org/wiki/Q1132755","display_name":"Logistic regression","level":2,"score":0.35262903571128845},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.2056075930595398},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.13721376657485962},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.1249343752861023},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.0}],"mesh":[{"descriptor_ui":"D000368","descriptor_name":"Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000369","descriptor_name":"Aged, 80 and over","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006306","descriptor_name":"Health Surveys","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009922","descriptor_name":"Oregon","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D010146","descriptor_name":"Pain","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":true},{"descriptor_ui":"D011057","descriptor_name":"Politics","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D015981","descriptor_name":"Epidemiologic Factors","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D017028","descriptor_name":"Caregivers","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true}],"locations_count":4,"locations":[{"id":"doi:10.1089/1096621041349482","doi":"https://doi.org/10.1089/1096621041349482","is_oa":false,"landing_page_url":"https://doi.org/10.1089/1096621041349482","pdf_url":null,"source":{"id":"https://openalex.org/S155536936","display_name":"Journal of Palliative Medicine","issn_l":"1096-6218","issn":["1096-6218","1557-7740"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320443","host_organization_name":"Mary Ann Liebert, Inc.","host_organization_lineage":["https://openalex.org/P4310320443","https://openalex.org/P4310320017"],"host_organization_lineage_names":["Mary Ann Liebert, Inc.","SAGE Publishing"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Palliative Medicine","raw_type":"journal-article"},{"id":"pmid:15265353","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/15265353","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of palliative medicine","raw_type":"Journal Article"},{"id":"pmh:oai:CiteSeerX.psu:10.1.1.695.1813","doi":null,"is_oa":false,"landing_page_url":"http://citeseerx.ist.psu.edu/viewdoc/summary?doi=10.1.1.695.1813","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"http://dredf.org/wp-content/uploads/2012/08/Oregon_Pall_Care_Study.pdf","raw_type":"text"},{"id":"pmh:oai:repository.library.georgetown.edu:10822/989844","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10822/989844","pdf_url":null,"source":{"id":"https://openalex.org/S4306402467","display_name":"DigitalGeorgetown (Georgetown University Library)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210145449","host_organization_name":"Center for Security and Emerging Technology","host_organization_lineage":["https://openalex.org/I4210145449"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"eweb:273803","raw_type":null}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":0.9537000060081482,"display_name":"Good health and well-being"}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[{"id":"https://openalex.org/G3049588951","display_name":"Symptom Management in Life-Threatening Illness","funder_award_id":"P20NR007807","funder_id":"https://openalex.org/F4320337353","funder_display_name":"National Institute of Nursing Research"},{"id":"https://openalex.org/G5997074172","display_name":"FAMILY PERCEPTIONS OF COMMUNITY-BASED DYING","funder_award_id":"R01NR003526","funder_id":"https://openalex.org/F4320337353","funder_display_name":"National Institute of Nursing Research"},{"id":"https://openalex.org/G6713206377","display_name":null,"funder_award_id":"1P20 NR07807-01","funder_id":"https://openalex.org/F4320337353","funder_display_name":"National Institute of Nursing Research"}],"funders":[{"id":"https://openalex.org/F4320309208","display_name":"Open Society Institute","ror":"https://ror.org/00qnfvz68"},{"id":"https://openalex.org/F4320312726","display_name":"University of Oregon","ror":"https://ror.org/0293rh119"},{"id":"https://openalex.org/F4320337353","display_name":"National Institute of Nursing Research","ror":"https://ror.org/01y3zfr79"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":41,"referenced_works":["https://openalex.org/W3166084","https://openalex.org/W19208318","https://openalex.org/W1209535897","https://openalex.org/W1576375084","https://openalex.org/W1705343366","https://openalex.org/W1967862102","https://openalex.org/W1970692536","https://openalex.org/W1970999437","https://openalex.org/W1981417910","https://openalex.org/W1985007311","https://openalex.org/W1993351502","https://openalex.org/W2009074065","https://openalex.org/W2011755789","https://openalex.org/W2026097367","https://openalex.org/W2046100094","https://openalex.org/W2049478516","https://openalex.org/W2051643611","https://openalex.org/W2051802274","https://openalex.org/W2067407686","https://openalex.org/W2077687699","https://openalex.org/W2084117528","https://openalex.org/W2102063576","https://openalex.org/W2129277966","https://openalex.org/W2133133777","https://openalex.org/W2135173603","https://openalex.org/W2135367382","https://openalex.org/W2137325786","https://openalex.org/W2143393838","https://openalex.org/W2152231641","https://openalex.org/W2155424617","https://openalex.org/W2166444516","https://openalex.org/W2169467605","https://openalex.org/W2245445845","https://openalex.org/W2328608554","https://openalex.org/W2329099948","https://openalex.org/W2410725299","https://openalex.org/W2417941360","https://openalex.org/W2626008824","https://openalex.org/W3023887779","https://openalex.org/W4247184637","https://openalex.org/W4285719527"],"related_works":["https://openalex.org/W7097618176","https://openalex.org/W2067407686","https://openalex.org/W1992040126","https://openalex.org/W2596795186","https://openalex.org/W1985853998","https://openalex.org/W1559451164","https://openalex.org/W3021100519","https://openalex.org/W2111672198","https://openalex.org/W4416033493","https://openalex.org/W2104691397"],"abstract_inverted_index":{"The":[0],"aim":[1],"of":[2,10,19,40,66,75,99,144,173,212,226,241,257],"this":[3,195],"study":[4],"was":[5],"to":[6,27,33,46,62,108,123,132,157,160],"compare":[7],"the":[8,16,64,71,97,137,170,202,205,238,258],"prevalence":[9,98],"family-reported":[11,100],"pain":[12,67,104,112,146,166],"or":[13,68,102,105,110,113,147,164,167],"distress":[14,69,106,168],"during":[15,22,70,169],"last":[17,171],"week":[18,74,172,240],"decedents'":[20],"lives":[21,175],"two":[23,138],"times:":[24],"November":[25,216],"1996":[26],"December":[28],"1997":[29],"and":[30,55,89,141,209,223,228,254,260],"June":[31],"2000":[32],"March":[34],"2002.":[35],"We":[36,94,190],"telephone-surveyed":[37],"family":[38],"caregivers":[39],"Oregonians":[41],"who":[42],"had":[43],"died":[44],"2":[45,177],"5":[47],"months":[48],"previously":[49],"in":[50,115,121,125,150,162,215,220,237],"private":[51],"homes,":[52,54],"nursing":[53,230,248],"other":[56,142],"community-based":[57],"settings.":[58],"Caregivers":[59],"were":[60,82],"asked":[61],"rate":[63],"level":[65],"decedent's":[72],"final":[73,239],"life":[76],"on":[77,246],"a":[78,128],"four-point":[79],"scale.":[80],"Data":[81],"collected":[83],"from":[84,87,92,119],"340":[85],"respondents":[86,91],"1996-1997":[88,122],"1384":[90],"2000-2002.":[93,126],"found":[95],"that":[96],"moderate":[101,163],"severe":[103,165],"(compared":[107],"comfortable":[109],"mild":[111],"distress)":[114],"Oregon":[116],"decedents":[117,149],"increased":[118,145],"30.8%":[120],"48%":[124],"Using":[127],"logistic":[129],"regression":[130],"model":[131],"control":[133,253],"for":[134,194,250],"differences":[135],"between":[136],"sampling":[139],"times":[140],"predictors":[143],"distress,":[148],"2000-2002":[151],"remained":[152],"approximately":[153],"twice":[154],"as":[155],"likely":[156],"be":[158,161],"reported":[159],"their":[174],"(Time":[176],"vs.":[178],"Time":[179],"1,":[180],"odds":[181],"ratio":[182],"[OR]":[183],"2.09,":[184],"95%":[185],"confidence":[186],"interval":[187],"[CI]":[188],"1.59-2.74).":[189],"discuss":[191],"possible":[192],"explanations":[193],"finding,":[196],"including":[197],"media":[198],"effect":[199],"created":[200],"by":[201],"publicity":[203],"surrounding":[204],"second":[206],"ballot":[207],"measure":[208],"subsequent":[210],"availability":[211],"physician-assisted":[213],"suicide":[214],"1997.":[217],"Alternatively,":[218],"trends":[219],"under":[221,224],"funding":[222],"staffing":[225],"hospice":[227],"community":[229],"resources":[231],"may":[232],"have":[233],"disproportionately":[234],"affected":[235],"care":[236,249],"life,":[242],"which":[243],"depends":[244],"heavily":[245],"skilled":[247],"effective":[251],"symptom":[252],"psychosocial":[255],"support":[256],"patient":[259],"family.":[261]},"counts_by_year":[{"year":2021,"cited_by_count":1},{"year":2016,"cited_by_count":2},{"year":2014,"cited_by_count":1},{"year":2012,"cited_by_count":1}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-06-24T00:00:00"}