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1.
BMC Palliat Care ; 21(1): 76, 2022 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-35578219

RESUMO

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.


Assuntos
Demência , Assistência Terminal , Cuidadores , Morte , Demência/terapia , Família , Humanos , Cuidados Paliativos/métodos , Folhetos , Conforto do Paciente
2.
Can J Aging ; 41(4): 631-640, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35137682

RESUMO

Most Canadians with dementia die in long-term care (LTC) facilities. No data are routinely collected in Canada on the quality of end-of-life care provided to this vulnerable population, leading to significant knowledge gaps. The Quebec Observatory on End-of-Life Care for People with Dementia was created to address these gaps. The Observatory is a research infrastructure designed to support the collection of data needed to better understand, and subsequently enhance, care quality for residents dying with dementia. This article reports on the main steps involved in setting up the Observatory, as well as a pilot study that involved 172 residents with dementia who died between 2016 and 2018 in one of 13 participating facilities. It describes the data gathered, methodological changes that were made along the way, feedback from participating facilities, and future developments of the Observatory.


Assuntos
Demência , Assistência Terminal , Humanos , Projetos Piloto , Canadá , Quebeque , Demência/terapia
3.
Can J Aging ; 41(1): 135-142, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34053473

RESUMO

The federal and Quebec governments are both considering extending medical aid/assistance in dying (MAID) to non-competent patients who would have requested MAID prior to losing capacity. In 2016-2017, we surveyed 136 Quebec physicians (response rate: 25.5%) on their attitudes towards extending MAID to such patients. Complementing our published findings, we herein identify demographic and practice characteristics that distinguish physicians who reported being open to extending MAID to non-competent patients with dementia, or willing to administer MAID themselves should it be legal, from those who were not. We found that physicians who were older, had stronger religious beliefs, were trained in palliative care, practiced in a teaching hospital, and had not received assisted dying requests in the year preceding the survey held less favourable attitudes towards MAID for non-competent patients with dementia. These findings will inform current deliberations as to whether assistance in dying should be extended to non-competent patients in some circumstances.


Assuntos
Demência , Médicos , Suicídio Assistido , Atitude do Pessoal de Saúde , Canadá , Demência/terapia , Humanos , Cuidados Paliativos
4.
BMC Med Ethics ; 22(1): 119, 2021 09 06.
Artigo em Inglês | MEDLINE | ID: mdl-34488722

RESUMO

BACKGROUND: Healthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity. METHODS: We conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death. RESULTS: Support for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics. CONCLUSIONS: Findings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered.


Assuntos
Demência , Suicídio Assistido , Antibacterianos/uso terapêutico , Atitude do Pessoal de Saúde , Canadá , Demência/tratamento farmacológico , Feminino , Humanos
5.
J Am Med Dir Assoc ; 21(2): 212-219, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31669289

RESUMO

OBJECTIVES: Antipsychotic medications are often used for the first-line management of behavioral and psychological symptoms of dementia (BPSD) contrary to guideline recommendations. The Optimizing Practices, Use, Care and Services-Antipsychotics (OPUS-AP) strategy aims to improve the well-being of long-term care (LTC) residents with major neurocognitive disorder (MNCD) by implementing a resident-centered approach, nonpharmacologic interventions, and antipsychotic deprescribing in inappropriate indications. DESIGN: Prospective, closed cohort supplemented by a developmental evaluation. SETTING AND PARTICIPANTS: Residents of designated wards in 24 LTC centers in Québec, Canada. METHODS: Provincial guidelines were disseminated, followed by the implementation of an integrated knowledge translation and mobilization strategy, including training, coaching, clinical tools, evaluation of clinical practices, and a change management strategy. Antipsychotic, benzodiazepine, and antidepressant prescriptions; BPSD; and falls were evaluated every 3 months, for 9 months, from January to October 2018. Semistructured interviews (n = 20) were conducted with LTC teams to evaluate the implementation of OPUS-AP. RESULTS: Of 1054 residents, 78.3% had an MNCD diagnosis and 51.7% an antipsychotic prescription. The cohort included 464 residents with both MNCD and antipsychotic prescription. Antipsychotic deprescribing (cessation or dose decrease) was attempted in 220 of the 344 residents still admitted at 9 months. Complete cessation was observed in 116 of these residents (52.7%) and dose reduction in 72 (32.7%), for a total of 188 residents (85.5%; 95% confidence interval: 80.1%, 89.8%). A decrease in benzodiazepine prescriptions and improvements in Cohen-Mansfield Agitation Inventory scores were observed among residents who had their antipsychotics deprescribed. Caregivers and clinicians expressed satisfaction as a result of observing an improved quality of life among residents. CONCLUSIONS AND IMPLICATIONS: Antipsychotic deprescribing was successful in a vast majority of LTC residents with MNCD without worsening of BPSD. Based on this success, phase 2 of OPUS-AP is now under way in 129 LTC centers in Québec.


Assuntos
Antipsicóticos , Demência , Assistência de Longa Duração , Antipsicóticos/uso terapêutico , Canadá , Demência/tratamento farmacológico , Humanos , Estudos Prospectivos , Qualidade de Vida , Quebeque
6.
Int J Geriatr Psychiatry ; 34(7): 1078-1086, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31034669

RESUMO

OBJECTIVE: The Canadian province of Quebec has recently legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. The province is considering extending the practice to incompetent patients. We compared the attitudes of four groups of stakeholders toward extending MAID to incompetent patients with dementia. METHODS: We conducted a province-wide postal survey in random samples of older adults, informal caregivers of persons with dementia, nurses, and physicians caring for patients with dementia. Clinical vignettes featuring a patient with Alzheimer's disease were used to measure the acceptability of extending MAID to incompetent patients with dementia. Vignettes varied according to the stage of the disease (advanced or terminal) and type of request (written or oral only). We used the generalized estimating equation (GEE) approach to compare attitudes across groups and vignettes. RESULTS: Response rates ranged from 25% for physicians to 69% for informal caregivers. In all four groups, the proportion of respondents who felt it was acceptable to extend MAID to an incompetent patient with dementia was highest when the patient was at the terminal stage, showed signs of distress, and had written a MAID request prior to losing capacity. In those circumstances, this proportion ranged from 71% among physicians to 91% among informal caregivers. CONCLUSION: We found high support in Quebec for extending the current MAID legislation to incompetent patients with dementia who have reached the terminal stage, appear to be suffering, and had requested MAID in writing while still competent.


Assuntos
Atitude do Pessoal de Saúde , Cuidadores/psicologia , Demência , Competência Mental , Suicídio Assistido/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Quebeque , Inquéritos e Questionários , Assistência Terminal/métodos
7.
BMC Geriatr ; 18(1): 204, 2018 09 04.
Artigo em Inglês | MEDLINE | ID: mdl-30180821

RESUMO

BACKGROUND: Medication regimens in nursing home (NH) residents with severe dementia should be frequently reviewed to avoid inappropriate medication, overtreatment and adverse drug events, within a comfort care approach. This study aimed at testing the feasibility of an interdisciplinary knowledge exchange (KE) intervention using a medication review guidance tool categorizing medications as either "generally", "sometimes" or "exceptionally" appropriate for NH residents with severe dementia. METHODS: A quasi-experimental feasibility pilot study with 44 participating residents aged 65 years or over with severe dementia was carried out in three NH in Quebec City, Canada. The intervention comprised an information leaflet for residents' families, a 90-min KE session for NH general practitioners (GP), pharmacists and nurses focusing on the medication review guidance tool, a medication review by the pharmacists for participating residents with ensuing team discussion on medication changes, and a post-intervention KE session to obtain feedback from team staff. Medication regimens and levels of pain and of agitation of the participants were evaluated at baseline and at 4 months post-intervention. A questionnaire for team staff explored perceived barriers and facilitators. Statistical differences in measures comparing pre and post-intervention were assessed using paired t-tests and Cochran's-Q tests. RESULTS: The KE sessions reached 34 NH team staff (5 GP, 4 pharmacists, 6 heads of care unit and 19 staff nurses). Forty-four residents participated in the study and were followed for a mean of 104 days. The total number of regular medications was 372 pre and 327 post-intervention. The mean number of regular medications per resident was 7.86 pre and 6.81 post-intervention. The odds ratios estimating the risks of using any regular medication or a "sometimes appropriate" medication post-intervention were 0.81 (95% CI: 0.71-0.92) and 0.83 (95% CI: 0.74-0.94), respectively. CONCLUSION: A simple KE intervention using a medication review guidance tool categorizing medications as being either "generally", "sometimes" or "exceptionally" appropriate in severe dementia was well received and accompanied by an overall reduction in medication use by NH residents with severe dementia. Levels of agitation were unaffected and there was no clinically significant changes in levels of pain. Staff feedback provided opportunities to improve the intervention.


Assuntos
Demência/terapia , Erros de Medicação/prevenção & controle , Casas de Saúde , Recursos Humanos de Enfermagem/normas , Cuidados Paliativos/normas , Idoso , Idoso de 80 Anos ou mais , Demência/diagnóstico , Estudos de Viabilidade , Feminino , Humanos , Masculino , Projetos Piloto , Quebeque , Índice de Gravidade de Doença
8.
Can J Public Health ; 109(5-6): 729-739, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30151675

RESUMO

OBJECTIVES: To elicit Quebec physicians' attitudes towards extending medical aid in dying (MAiD) to incompetent patients and to compare the attitudes of family physicians to those of other medical specialists. METHODS: We conducted a postal survey among physicians caring for patients with dementia. We used hypothetical vignettes to elicit their attitudes towards MAiD and continuous deep sedation (CDS) to relieve suffering at end of life. Two patients were depicted in the vignettes: one with cancer eligible for MAiD and one with dementia. The generalized estimating equation approach was used to investigate factors associated with attitudes, including the stage of the illness (advanced vs terminal dementia) and the presence or absence of a prior written request. RESULTS: A total of 136 physicians out of 653 returned the questionnaire. Physicians favoured CDS over MAiD for relieving suffering in the cancer vignette (93% vs 79%; p = 0.002). In advanced dementia, 45% of physicians supported giving the patient access to MAiD with a written request and 14% without such request. At the terminal stage of dementia, these proportions increased to 71% and 43%, respectively (p < 0.001), reaching 79% and 52% among family physicians. Support for CDS in terminal dementia was lower than in end-stage cancer (68% vs 93%; p < 0.001) and equal to MAiD with a written request (68% vs 71%; p = 0.623). CONCLUSION: Many Quebec physicians support extending MAiD to incompetent patients with dementia to relieve suffering at the terminal stage. This finding will inform current deliberations as to whether MAiD should be extended to these patients.


Assuntos
Atitude do Pessoal de Saúde , Demência/psicologia , Competência Mental , Médicos/psicologia , Suicídio Assistido/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Médicos/estatística & dados numéricos , Quebeque , Inquéritos e Questionários
9.
Can Geriatr J ; 21(1): 6-13, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29581816

RESUMO

BACKGROUND: With Canada's senior population increasing, there is greater demand for family physicians with enhanced skills in Care of the Elderly (COE). The College of Family Physicians Canada (CFPC) has introduced Certificates of Added Competence (CACs), one being in COE. Our objective is to summarize the process used to determine the Priority Topics for the assessment of competence in COE. METHODS: A modified Delphi technique was used, with online surveys and face-to-face meetings. The Working Group (WG) of six physicians acted as the nominal group, and a larger group of randomly selected practitioners from across Canada acted as the Validation Group (VG). The WG, and then the VG, completed electronic write-in surveys that asked them to identify the Priority Topics. Responses were compiled, coded, and tabulated to identify the topics and to calculate the frequencies of their selection. The WG used face-to-face meetings and iterative discussion to decide on the final topic names. RESULTS: The correlation between the initial Priority Topic list identified by the VG and that identified by the WG is 0.6793. The final list has 18 Priority Topics. CONCLUSION: Defining the required competencies is a first step to establishing national standards in COE.

10.
J Med Ethics ; 44(7): 498-503, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29523757

RESUMO

OBJECTIVES: To investigate which of two sources of information about an older adult's wishes-choices made in an advance directive or proxy's opinion-provides better insight into the older adult's preferences measured in hypothetical clinical situations involving decisional incapacity. METHODS: Secondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express healthcare preferences. An average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult's answers in each of the seven scenarios. RESULTS: Eighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies' guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios. CONCLUSIONS: Findings suggest that a directive might provide better insight into a person's wishes than the person's proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own. TRIAL REGISTRATION NUMBER: ISRCTN89993391; Post-results.


Assuntos
Diretivas Antecipadas/ética , Tomada de Decisões/ética , Demência , Competência Mental/legislação & jurisprudência , Preferência do Paciente/legislação & jurisprudência , Procurador/legislação & jurisprudência , Diretivas Antecipadas/legislação & jurisprudência , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Estudos Prospectivos
11.
Patient Educ Couns ; 101(7): 1256-1261, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29452728

RESUMO

OBJECTIVE: To investigate how confidence in surrogates' ability to make consistent decisions in the future change over time, in the context of an ACP intervention that did not improve surrogates' ability to predict an older adult's hypothetical treatment preferences. METHODS: The study involved 235 older adults and surrogates, randomly allocated to an ACP or control intervention. At baseline, end of intervention, and six months later, participants were asked how confident they were in the surrogate making decisions in the future that would match the older adult's wishes. RESULTS: By the end of the intervention, confidence had increased among older adults and surrogates involved in ACP (OR = 3.1 and 5.8 respectively, p < 0.001), while less change occurred among controls. Over the following six months, confidence remained stable among older adults but decreased among surrogates (OR = 0.5, p = 0.005). CONCLUSION: ACP increases confidence in surrogates' ability to make consistent decisions, which may lighten the burden of substitute decision making. Efforts to improve substitute decision-making must continue so that participants' confidence is not based on the mistaken assumption that surrogates can make consistent decisions. PRACTICE IMPLICATIONS: Professionals involved in ACP should inform participants that confidence in the surrogate may increase in the absence of enhanced predictive ability.


Assuntos
Planejamento Antecipado de Cuidados , Tomada de Decisões , Preferência do Paciente/psicologia , Procurador , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Autoeficácia
12.
Alzheimer Dis Assoc Disord ; 32(3): 247-254, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29283927

RESUMO

Euthanasia is a controversial and complex issue, especially when involving incompetent patients. On December 10, 2015, Quebec became the first Canadian province to give access to medical aid in dying (MAiD) (ie, euthanasia performed by a physician) to competent patients who satisfy strictly defined criteria. Less than 2 years later, Quebec is considering extending MAiD to incompetent patients who made an advance request. With the objective of contributing scientific data to current societal debates, we conducted a survey among 471 informal caregivers of persons with dementia, reached through Alzheimer Societies. We used a series of vignettes featuring a person with Alzheimer disease to investigate respondents' attitudes towards MAiD. The response rate was 69%. Two-thirds [68%; 95% confidence interval, 63%-73%] found it acceptable to extend MAiD to an incompetent patient at an advanced stage of Alzheimer disease who had made a written request while competent, and 91% (95% confidence interval, 87%-94%) found it acceptable at the terminal stage. Self-determination was the most widely endorsed argument in favor of access to MAiD for incompetent patients. Findings suggest strong support among informal caregivers for extending MAiD to incompetent patients, provided they are terminally-ill and had made a written request before losing capacity.


Assuntos
Diretivas Antecipadas , Cuidadores/psicologia , Demência/psicologia , Eutanásia , Competência Mental/normas , Idoso , Atitude do Pessoal de Saúde , Feminino , Humanos , Masculino , Médicos/psicologia , Quebeque , Inquéritos e Questionários
13.
Palliat Med ; 32(3): 613-621, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-28731379

RESUMO

BACKGROUND: Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care. AIM: To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities. DESIGN: Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period. The intervention had five components: (1) training program to physicians and nursing staff, (2) clinical monitoring of pain using an observational pain scale, (3) implementation of a regular mouth care routine, (4) early and systematic communication with families about end-of-life care issues with provision of an information booklet, and (5) involvement of a nurse facilitator to implement and monitor the intervention. Quality of care was assessed with the Family Perception of Care Scale. The Symptom Management for End-of-Life Care in Dementia and the Comfort Assessment in Dying scales were used to assess the quality of dying. PARTICIPANTS: A total of 193 residents with advanced dementia and their close family members were included (97 in the intervention group and 96 in the usual care group). RESULTS: The Family Perception of Care score was significantly higher in the intervention group than in the usual care group (157.3 vs 149.1; p = 0.04). The Comfort Assessment and Symptom Management scores were also significantly higher in the intervention group. CONCLUSIONS: Our multidimensional intervention in long-term care facilities for patients with terminal dementia resulted in improved quality of care and quality of dying when compared to usual care.


Assuntos
Demência/enfermagem , Família/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Assistência de Longa Duração/psicologia , Recursos Humanos de Enfermagem/psicologia , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Atitude Frente a Morte , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Casas de Saúde , Direito a Morrer
14.
JMIR Res Protoc ; 6(11): e208, 2017 Nov 13.
Artigo em Inglês | MEDLINE | ID: mdl-29133281

RESUMO

BACKGROUND: Alzheimer's disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence. Some commentators have argued that MAiD should be accessible to incompetent patients as well, provided appropriate safeguards are in place. Governments of both Quebec and Canada are currently considering whether MAiD should be accessible through written requests made in advance of loss of capacity. OBJECTIVE: Aimed at informing the societal debate on this sensitive issue, this study will compare stakeholders' attitudes towards expanding MAiD to incompetent patients with dementia, the beliefs underlying stakeholders' attitudes on this issue, and the value they attach to proposed safeguards. This paper describes the study protocol. METHODS: Data will be collected via a questionnaire mailed to random samples of community-dwelling seniors, relatives of persons with dementia, physicians, and nurses, all residing in Quebec (targeted sample size of 385 per group). Participants will be recruited through the provincial health insurance database, Alzheimer Societies, and professional associations. Attitudes towards MAiD for incompetent patients with dementia will be elicited through clinical vignettes featuring a patient with Alzheimer's disease for whom MAiD is considered towards the end of the disease trajectory. Vignettes specify the source of the request (from the patient through an advance request or from the patient's substitute decision-maker), manifestations of suffering, and how close the patient is to death. Arguments for or against MAiD are used to elicit the beliefs underlying respondents' attitudes. RESULTS: The survey was launched in September 2016 and is still ongoing. At the time of submission, over 850 respondents have returned the questionnaire, mostly via mail. CONCLUSIONS: This study will be the first in Canada to directly compare views on MAiD for incompetent patients with dementia across key stakeholder groups. Our findings will contribute valuable data upon which to base further debate about whether MAiD should be accessible to incompetent patients with dementia, and if so, under what conditions.

15.
Int Psychogeriatr ; 29(7): 1061-1068, 2017 07.
Artigo em Inglês | MEDLINE | ID: mdl-28260547

RESUMO

BACKGROUND: Family members are often called upon to make decisions for an incapacitated relative. Yet they have difficulty predicting a loved one's desire to receive treatments in hypothetical situations. We tested the hypothesis that this difficulty could in part be explained by discrepant quality-of-life assessments. METHODS: The data come from 235 community-dwelling adults aged 70 years and over who rated their quality of life and desire for specified interventions in four health states (current state, mild to moderate stroke, incurable brain cancer, and severe dementia). All ratings were made on Likert-type scales. Using identical rating scales, a surrogate chosen by the older adult was asked to predict the latter's responses. Linear mixed models were fitted to determine whether differences in quality-of-life ratings between the older adult and surrogate were associated with surrogates' inaccuracy in predicting desire for treatment. RESULTS: The difference in quality-of-life ratings was a significant predictor of prediction inaccuracy for the three hypothetical health states (p < 0.01) and nearly significant for the current health state (p = 0.077). All regression coefficients were negative, implying that the more the surrogate overestimated quality of life compared to the older adult, the more he or she overestimated the older adult's desire to be treated. CONCLUSION: Discrepant quality-of-life ratings are associated with surrogates' difficulty in predicting desire for life-sustaining interventions in hypothetical situations. This finding underscores the importance of discussing anticipated quality of life in states of cognitive decline, to better prepare family members for making difficult decisions for their loved ones. TRIAL REGISTRATION NUMBER: ISRCTN89993391.


Assuntos
Disfunção Cognitiva/psicologia , Tomada de Decisões , Cuidados para Prolongar a Vida , Procurador , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Neoplasias Encefálicas/psicologia , Demência/psicologia , Feminino , Previsões , Humanos , Vida Independente , Modelos Lineares , Masculino , Acidente Vascular Cerebral/psicologia
16.
Health Qual Life Outcomes ; 15(1): 4, 2017 Jan 07.
Artigo em Inglês | MEDLINE | ID: mdl-28069027

RESUMO

BACKGROUND: Older adults are encouraged by many organizations to engage in advance care planning in the event of decisional incapacity. Planning for future health care often involves anticipating health-related quality of life (HRQoL) in states of reduced cognitive functioning. No study has yet examined whether anticipated HRQoL is stable over time. The accuracy with which significant others can predict how an older adult envisions HRQoL in a future state of cognitive impairment is also unknown. We investigated the extent to which health-related quality-of-life ratings made by older adults and designated proxies for health states of increasing cognitive impairment are consistent over time and agree with each other. METHODS: Results are based on HRQoL ratings made on a 5-point Likert scale by 235 community-based elder-proxy dyads on three occasions. Ratings were obtained for the older adult's current health state as well as under the assumption that he/she had a mild to moderate stroke, incurable brain cancer or severe dementia. Data were analyzed using both traditional approaches (e.g., intraclass correlation coefficients, Bland-Altman plots) and the theory of generalizability. RESULTS: We found ratings to be reasonably consistent over time and in good agreement within dyads, even more so as implied cognitive functioning worsened. Across health states, ratings over time or within elder-proxy dyads were no more than one category apart in over 87% of cases. Using the theory of generalizability, we further found that, of the two facets investigated, rater had a greater influence on score variability than occasion. CONCLUSIONS: These findings underscore the importance of discussing health-related quality-of-life issues during advance care planning and involving designated proxies in the discussion to enhance their understanding of the role that HRQoL should play in actual decision-making situations. Medical decision-making may be influenced by healthcare providers' and family members' assessments of an incapacitated patient's health-related quality of life, in addition to that of the designated proxy. Future studies should investigate whether these two groups of individuals share the views of the patient and the designated proxy on anticipated HRQoL.


Assuntos
Cuidadores/psicologia , Disfunção Cognitiva/psicologia , Avaliação Geriátrica/métodos , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Demência/psicologia , Família , Feminino , Humanos , Masculino , Procurador , Reprodutibilidade dos Testes , Inquéritos e Questionários
18.
Patient Educ Couns ; 99(11): 1785-1795, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-27283764

RESUMO

OBJECTIVE: To test an intervention designed to motivate older adults in documenting their healthcare preferences in advance, and to guide proxies in making hypothetical decisions that match those of the older adult. METHODS: The trial involved 235 older adults, of which half were assisted in communicating their wishes to their proxy. Hypothetical vignettes were used at baseline and twice after the intervention to elicit older adults' preferences and assess their proxy's ability to predict them. RESULTS: By the end of the trial, 80% of older adults allocated to the experimental group had documented their wishes. Changes over time in mean accuracy scores did not differ between groups for any hypothetical situations, except when limiting the sample to dyads that were highly discordant at baseline. CONCLUSION: The intervention motivated a large proportion of older adults to express their preferences but had little effect on proxies' ability to predict them. PRACTICE IMPLICATIONS: Educational tools developed for this study will assist healthcare providers in helping older adults to record their wishes in advance. Clients must be informed of the challenge of making substitute decisions and of the need to discuss the amount of leeway the proxy should have in interpreting expressed wishes.


Assuntos
Planejamento Antecipado de Cuidados , Diretivas Antecipadas , Tomada de Decisões , Procurador , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Preferência do Paciente , Características de Residência
19.
Int J Palliat Nurs ; 21(8): 385-91, 2015 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-26312534

RESUMO

BACKGROUND: A Canadian guide for nursing home staff on comfort care for dementia has been translated and adapted for use in Japan. The present study piloted educational intervention for nursing home staff using the Japanese comfort care booklet. METHOD: Some 61 nursing home staff (nurses and other care workers) completed a session that included pre-assessment, a 30-minute seminar using the comfort care booklet, post-assessment, and a one-hour debriefing meeting. A Japanese version of the questionnaire on palliative care for advanced dementia (qPAD) scale was used to assess knowledge and attitudes toward palliative care for advanced dementia. RESULTS: The participants demonstrated a significant increase in knowledge (mean score, 14.3 to 15.1/23, t (60) = 2.35, p=0.011) and attitudes (43.8 to 45.2/60, t (60) = 2.51, p = 0.015) toward palliative care for advanced dementia from pre-assessment to post-assessment. CONCLUSION: The educational intervention using the Japanese comfort care booklet may have improved nursing home staff's perspectives on palliative care for advanced dementia.


Assuntos
Demência/enfermagem , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/educação , Instituição de Longa Permanência para Idosos , Casas de Saúde , Cuidados Paliativos/organização & administração , Folhetos , Adulto , Idoso , Canadá , Feminino , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/educação , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/normas , Humanos , Japão , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Guias de Prática Clínica como Assunto , Tradução
20.
J Am Med Dir Assoc ; 16(7): 629.e1-17, 2015 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-25979776

RESUMO

BACKGROUND: Seniors with severe dementia residing in nursing homes (NHs) frequently receive large numbers of medications. With disease progression, the medications' harm-benefit ratio changes and they need to be reviewed, adjusted, or discontinued. Evidence on successful interventions to optimize medication use among these residents is lacking. OBJECTIVES: The objective of the study was to identify categories of appropriateness for medications as well as successful interventions or elements thereof to improve medication use in NH residents with severe dementia, suitable for use in Canada. METHODS: A scoping literature review was performed to identify criteria and categories of appropriateness of medications for these residents as well as elements of successful interventions to optimize medication use. A 15-member multidisciplinary Delphi panel was convened to evaluate the applicability of these findings for NHs in a Canadian province. RESULTS: The scoping review identified 1 study presenting categories of appropriateness specific to residents with severe dementia and 35 interventions aimed at reducing drug-drug interactions, inappropriate use of specific drug classes, inappropriate drug use overall, or polypharmacy. Regarding appropriateness, the Delphi panel agreed on the categorization of 63 medications or medication classes as "generally," "sometimes," or "rarely appropriate." The main elements of interventions successful in improving appropriate medication use in NH residents with dementia also were approved by the Delphi panel (ie, medication reviews using criteria of appropriateness, educational and training sessions, and interdisciplinary case conferences). CONCLUSIONS: These results may be used to develop an intervention to optimize medication use in NH residents with severe dementia.


Assuntos
Demência/tratamento farmacológico , Prescrição Inadequada , Casas de Saúde , Medicamentos sob Prescrição/uso terapêutico , Idoso , Humanos , Índice de Gravidade de Doença
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