Does regulating private long-term care facilities lead to better care? A study from Quebec, Canada.

OBJECTIVE: In the province of Quebec, Canada, long-term residential care is provided by two types of facilities: publicly funded accredited facilities and privately owned facilities in which care is privately financed and delivered. Following evidence that private facilities were delivering inadequate care, the provincial government decided to regulate this industry. We assessed the impact of regulation on care quality by comparing quality assessments made before and after regulation. In both periods, public facilities served as a comparison group. DESIGN: A cross-sectional study conducted in 2010-12 that incorporates data collected in 1995-2000. SETTINGS: Random samples of private and public facilities from two regions of Quebec. PARTICIPANTS: Random samples of disabled residents aged 65 years and over. In total, 451 residents from 145 care settings assessed in 1995-2000 were compared with 329 residents from 102 care settings assessed in 2010-12. INTERVENTION: Regulation introduced by the province in 2005, effective February 2007. MAIN OUTCOME MEASURE: Quality of care measured with the QUALCARE Scale. RESULTS: After regulation, fewer small-size facilities were in operation in the private market. Between the two study periods, the proportion of residents with severe disabilities decreased in private facilities whereas it remained >80% in their public counterparts. Meanwhile, quality of care improved significantly in private facilities, while worsening in their public counterparts, even after controlling for confounding. CONCLUSIONS: The private industry now provides better care to its residents. Improvement in care quality likely results in part from the closure of small homes and change in resident case-mix.

Substitute consent practices in the face of uncertainty: a survey of Canadian researchers in aging.

BACKGROUND: In Canada and elsewhere, research policies require researchers to secure consent from a legally authorized representative (LAR) for prospective participants unable to consent. Few jurisdictions, however, offer a clear legislative basis for LAR identification. We investigated Canadian researchers' practices regarding the involvement of decisionally incapacitated participants and tested whether reported practices were associated with (1) researchers' understanding of the law on third-party authorization of research and (2) their comfort with allowing a family member to consent on behalf of an incapacitated relative. METHODS: We surveyed researchers in aging from four Canadian provinces about their practices with prospective participants deemed incapable of consent, their understanding of relevant law, and comfort with family consent for research purposes. Understanding and comfort were measured with research vignettes that briefly described hypothetical studies in which an adult who lacks the capacity to consent was invited to participate. RESULTS: Many respondents reported soliciting consent from a family member (45.7% for low-risk studies and 10.7% for serious risks studies), even in jurisdictions where such authority is uncertain at law. Researchers' tendency to solicit family consent was associated with their comfort in doing so, but not with their understanding of the law on substitute consent for research. CONCLUSIONS: Findings underscore the need to clarify who may authorize an incapacitated adult's participation in research. Meanwhile, people should inform their relatives of their desire to participate or not in research in the event of incapacity, given researchers' tendency to turn to family for consent, even where not supported by law.

Are Canadians providing advance directives about health care and research participation in the event of decisional incapacity?

OBJECTIVE: Advance planning for health care and research participation has been promoted as a mechanism to retain some control over one's life, and ease substitute decision making, in the event of decisional incapacity. Limited data are available on Canadians' current advance planning activities. We conducted a postal survey to estimate the frequency with which Canadians communicate their preferences about health care and research should they become incapacitated. METHOD: We surveyed 5 populations (older adults, informal caregivers, physicians, researchers in aging, and research ethics board members) from Nova Scotia, Ontario, Alberta, and British Columbia. We asked respondents whether they had expressed their preferences regarding a substitute decision maker, health care, and research participation in the event of incapacity. RESULTS: Two out of 3 respondents (62.0%; 95% CI 59.1% to 64.8%) had been advised to communicate their health care preferences in advance. Oral expression of wishes was reported by 69.1% of respondents (95% CI 66.8% to 71.3%), and written expression by 46.7% (95% CI 44.3% to 49.2%). Among respondents who had expressed wishes in advance (orally or in writing), 91.2% had chosen a substitute decision maker, 80.9% had voiced health care preferences, and 19.5% had voiced preferences regarding research participation. Having been advised to communicate wishes was a strong predictor of the likelihood of having done so. CONCLUSIONS: Advance planning has increased over the last 2 decades in Canada. Nonetheless, further efforts are needed to encourage Canadians to voice their health care and research preferences in the event of incapacity. Physicians are well situated to promote advance planning to Canadians.

Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?

BACKGROUND: Dementia research often requires the participation of people with dementia. Obtaining informed consent is problematic when potential participants lack the capacity to provide it. We investigated comfort with proxy consent to research involving older adults deemed incapable of this decision, and examined if comfort varies with the type of proxy and the study's risk-benefit profile. METHODS: We surveyed random samples of five relevant groups (older adults, informal caregivers, physicians, researchers in aging, and Research Ethics Board members) from four Canadian provinces. Respondents were presented with scenarios involving four types of proxies (non-assigned, designated in a healthcare advance directive with or without instructions specific to research participation, and court-appointed). Given a series of risk-benefit profiles, respondents indicated whether they were comfortable with proxy consent to research for each scenario. RESULTS: Two percent of the respondents felt proxy consent should never be allowed. In all groups, comfort depended far more on the risk-benefit profile associated with the research scenario than with type of proxy. For research involving little or no risk and potential personal benefits, over 90% of the respondents felt comfortable with substitute consent by a designated or court-appointed proxy while 80% were at ease with a non-assigned proxy. For studies involving serious risks with potentially greater personal benefits, older adults and informal caregivers were less comfortable with proxy consent. CONCLUSIONS: A large majority of Canadians are comfortable with proxy consent for low-risk research. Further work is needed to establish what kinds of research are considered to be low risk.