OBJECTIVE: Palliative care providers may face questions from patients and relatives regarding the heritability of cancers. Implications of such discussions for providers have been little explored. This study aimed to gather palliative care providers' views on their main needs, roles, and ethical concerns regarding cancer family history discussions.
METHOD: The palliative care providers who participated in the 2015 and 2017 annual meetings of the Quebec Palliative Care Association were approached to complete a web-based questionnaire. Study participants answered the questionnaire between November 2016 and July 2017. They were asked to identify the most facilitating factor for cancer family history discussions, as well as their most important knowledge needs, potential role, and ethical concerns. Descriptive analyses were conducted.
RESULTS: Ninety-four palliative care providers answered the questionnaire. Access to specialized resources to obtain information and protocols or guidelines were considered the most facilitating factors for cancer family history discussions by 32% and 20% of providers, respectively. Knowledge of hereditary cancers was the most relevant educational need for 53%. Thirty-eight per cent considered essential to be informed about their rights and duties regarding cancer family history discussions. Being attentive to patients' concerns and referring families to appropriate resources were identified as the most relevant roles for palliative care providers by 47% and 34% of respondents, respectively. Fifty-eight per cent agreed that cancer family history discussions should be initiated only if beneficial to family members.
SIGNIFICANCE OF RESULTS: Education on hereditary cancers made consensus among palliative care providers as the most important knowledge need regarding discussing cancer family history at the end of life. Nonetheless, other less commonly expressed needs, including access to genetics specialists, protocols, or guidelines, and awareness of provider rights and duties concerning such discussions, deserve attention. Answering providers' needs might help optimize cancer predisposition management in palliative care.
Context: In most jurisdictions where medical-aid-in-dying (MAiD) is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD.
Methods: We developed a questionnaire for mental health care providers to better understand their perspectives related to ethical issues in relation to MAiD in the context of severe and persistent suffering caused by mental illness. We used a mixed-methods survey approach, using a concurrent embedded model with both closed and open-ended questions.
Findings: 477 healthcare providers from the province of Québec (Canada) completed the questionnaire. One third of the sample (34.4%) were nurses, one quarter psychologists (24.3%) and one quarter psycho-educators (24%). Nearly half of the respondents (48.4%) considered that people with a severe mental illness should be granted the right to opt for MAiD as a way to end their suffering. Respondents were more likely to feel comfortable listening to the person and participating in discussions related to MAiD for a mental illness than offering care or the means for the person to access MAiD. Most (86.2%) reported that they had not received adequate/sufficient training, education or preparation in order to address ethical questions surrounding MAiD.
Conclusions: The findings highlight how extending MAiD to people with a mental illness would affect daily practices for mental healthcare providers who work directly with people who may request MAiD. The survey results also reinforce the need for adequate training and professional education in this complex area of care.
Le Colloque Yves Quenneville se tient aux deux ans dans différentes régions du Québec, le plus souvent sous l'égide d'une Maison ou d'une Unité hospitalière de soins palliatifs... Ce XVIIè colloque, organisé conjointement par la Maison Victor Gadbois de Beloeil et la Maison Michel Sarrazin de Québec, se tenait cette année du 25 au 27 septembre 2019.
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À quoi pensons-nous quand nos jours sont comptés ? Nos réactions sont-elles différentes selon que nous avons vingt, quarante ou quatre-vingts ans ? Que retenons-nous de la vie à l’approche de nos derniers instants ?
Les auteures ont rencontré des personnes de tous âges, mourantes ou atteintes d’une maladie potentiellement mortelle, pour les écouter, elles et leurs proches, parler de leur expérience et capter en photo une partie de leur essence. L’annonce du diagnostic, les peurs, la réaction des autres, la définition du bonheur : voilà ce dont ont parlé Alexis, 10 ans, qui veille sur sa maman malade ; Patrick, 38 ans, déchiré à l’idée de quitter sa famille ; André, 80 ans, qui a choisi de profiter de chaque instant qu’il lui reste ; et plusieurs autres. De cette démarche résulte un livre infiniment humain, une manifestation d’espoir où toutes les personnes impliquées, à travers une confession généreuse, laissent entrevoir leurs déceptions, mais aussi leurs joies.
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All family practice residents need to know the basics about discussing end-of-life care with patients, their caregivers, and loved ones. This might entail imparting knowledge, skills, and attitudes with respect to medical assistance in dying (MAID). Medical assistance in dying became legal in 2016 (2015 in Quebec), and in the past year, about 1% of all deaths in Canada were assisted by clinicians. Different health authorities reported MAID rates of between 5% and 0.5%. As our laws and societies are similar to those of the Netherlands and Belgium, we can expect that within a few years, the rates of MAID across Canada will be 4% to 5%. This translates to 13 000 deaths annually. All family doctors must be prepared to answer questions from patients about MAID and give accurate information regardless of their personal feelings and values. Some will want to do assessments and some will also want to provide MAID for their patients. Most health authorities will have a program in place to mentor those practitioners who wish to provide MAID.
Quebec’s Superior Court has ruled in favour of two plaintiffs who were denied medical assistance in dying because their conditions did not imminently threaten to end their lives.
ssisted dying laws in both Canada and Quebec stipulate that only patients facing “reasonably foreseeable” death may access medical assistance in dying. But this requirement contravenes Canada’s charter of rights and freedoms, ruled Justice Christine Baudouin. She gave the federal and provincial governments six months to amend their laws before those provisions are suspended. Both governments said that they would study the ruling before deciding whether to appeal.
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Plusieurs CSSS du Québec réfléchissent sur l’organisation des soins et services en santé mentale pour la clientèle âgée afin de mieux les desservir. Certains ont souligné leur intérêt à implanter un modèle organisationnel de services en santé mentale qui s’apparente à celui du CSSS Cavendish-CAU. Ce modèle, en place depuis plus d’une dizaine d’années, fut développé grâce à l’expertises cliniques et aux meilleures pratiques dans le domaine. Avant d’exporter ce modèle novateur de services, il apparaissait important d’analyser son évolution à travers le temps. Une analyse détaillée de plusieurs sources de données (ex. documents de travail, entrevues individuelles, focus groups, etc.) a permis de constater que les services imaginés en 1999 ont passablement changés. Cette analyse souligne plusieurs transformations positives telles que l’amélioration du continuum de soins, l’augmentation et la diversification du panier de services, mais également des changements de paradigmes et de pratiques sont questionnables. Le Plan d’action (2005) du MSSS a évacué deux concepts fondamentaux des services spécialisés en santé mentale 60 ans et plus (SSSM60+), soit l’autonomie psychosociale et les comportements à risques qui sont à la base d’une intervention plus sociale que médicale. Une attention particulière doit être accordée à ces concepts afin de les remettre à l’avant plan dans l’offre de services.
En se basant sur le concept d’exclusion sociale, cet article soutient que le paradigme de l’État d’investissement social de même que l’accent mis par les politiques sur le vieillissement actif contribuent à l’exclusion des personnes âgées itinérantes (PAI) tant dans les politiques, les pratiques que la recherche. S’appuyant sur trois politiques et plans d’action sur l’itinérance émanant des gouvernements fédéral (canadien), provincial (québécois) et municipal (la Ville de Montréal), cet article montre comment l’exclusion des PAI se manifeste dans ces stratégies. Enfin, cet article démontre le besoin de reconnaître les multiples exclusions des PAI et conclut sur un appel à différents acteurs afin qu’ils adoptent une posture critique face aux discours et aux modèles normatifs qui concourent à l’exclusion de cette population.
Bien que ce ne soit pas le but visé par la Loi concernant les soins de fin de vie, le don dans un contexte d'aide médicale à mourir (AMM) a été rendu possible au Québec après l'adoption de cette loi en juin 2014. Cela a soulevé plusieurs questions, des dilemmes moraux aux problèmes de logistique. Transplant Québec, l'organisme provincial de dons d'organes, a été proactif dans la création de politiques et de procédures qui permettent le don dans un contexte d'AMM de façon à respecter la dignité du patient à l'approche de la mort et à lui offrir la possibilité de donner des organes qui pourraient sauver la vie de ceux qui en ont besoin. Cet article a pour but de répondre aux diverses préoccupations soulevées par ce procédé, tels les conflits d'intérêts potentiels, la capacité de la personne à donner son consentement, l'impact des changements nécessaires au processus de l'AMM, et l'assurance que la mort du donneur potentiel est confirmée selon les normes légales et médicales. L'expérience actuelle du don au Québec dans un contexte d'AMM est aussi abordée. Il est nécessaires de mieux comprendre l'impact que le don dans un contexte d'AMM peut avoir sur les patients à l'approche de la mort et sur le processus de deuil des proches.
BACKGROUND: Under Quebec's Act respecting end-of-life care, physicians may refuse to provide medical aid in dying because of personal convictions, also called conscientious objections. Before legalisation, the results of our survey showed that the majority of physicians were in favour of medical aid in dying (76%), but one-third (28%) were not prepared to perform it. After 18 months of legalisation, physicians were refusing far more frequently than the pre-Act survey had anticipated.
AIM: To explore the conscientious objections stated by physicians so as to understand why some of them refuse to get involved in their patients' medical aid in dying requests.
DESIGN/PARTICIPANTS: An exploratory qualitative study based on semi-structured interviews with 22 physicians who expressed a refusal after they received a request for medical aid in dying. Thematic descriptive analysis was used to analyse physicians' motives for their conscientious objections and the reasons behind it.
RESULTS: The majority of physicians who refused to participate did not oppose medical aid in dying. The reason most often cited is not based on moral and religious grounds. Rather, the emotional burden related to this act and the fear of psychological repercussions were the most expressed motivations for not participating in medical aid in dying.
CONCLUSION: The originality of this research is based on what the actual perception is of doing medical aid in dying as opposed to merely a conceptual assent. Further explorations are required in order to support policy decisions such as access to better emotional supports for providers and interdisciplinary support.
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.
PURPOSE: Several new drug therapies have been approved in CRPC in the past decade. However, little is known about their potential overuse at the end of life. Cancer therapy use at the end of life has been considered an indicator of overtreatment. The study objective was to describe CRPC drug use in the last month of life of CRPC patients in Quebec.
PATIENTS AND METHODS: Using administrative databases from the province of Quebec in Canada, we identified patients who received medical or surgical castration treatment, received one or more CRPC drugs (chemotherapy, abiraterone, or bone-targeted therapy), and died between 2001 and 2013. CRPC drug use in the last month of life was the primary outcome.
RESULTS: The cohort consisted of 1,148 patients with CRPC. A total of 316 men (27.5%) received a CRPC drug in the last month of life. For those who received chemotherapy, abiraterone, and bone-targeted therapy, 10.2%, 27.8%, and 31.8% received them in the last month of life, respectively. In multivariable analyses, age older than 75 years (odds ratio [OR], 0.75; 95% CI, 0.57 to 0.99), and prostate cancer diagnosis received less than 24 months earlier (OR, 0.43; 95% CI, 0.26 to 0.72) were associated with less CRPC drug use. Relative to dying between 2005 and 2011, dying between 2012 and 2013 (OR 1.60; 95% CI, 1.18 to 2.18) was associated with greater CRPC drug use.
CONCLUSION: More than one quarter of patients received CRPC drug therapies in the last month of life. Persistent chemotherapy, abiraterone, bone-targeted therapies, and medical castration drugs in the last month of life may be an indicator of inappropriate and expensive end-of-life care.
BACKGROUND: Respiratory distress protocols (RDPs) are protocolized prescriptions comprised of 3 medications (a benzodiazepine, an opioid, and an anticholinergic) administered simultaneously as an emergency treatment for respiratory distress in palliative care patients in the province of Quebec, Canada. However, data on appropriate use that justifies the combination of all 3 components is scarce and based on individual pharmacodynamic properties along with expert consensus.
OBJECTIVES: Our study aimed to evaluate the conformity and the effectiveness of RDPs prescribed and administered to hospitalized adult patients.
METHODS: This was a prospective and descriptive study conducted in a single center. Prescription and administration conformity were assessed based on predefined appropriateness criteria.
RESULTS: A total of 467 adult patients were prescribed a RDP, 175 administrations were documented, and 78 patients received at least 1 RDP. Prescription conformity was assessed on 1473 separate occasions over the trial period. Overall prescription conformity was found to be 37% (95% confidence interval [CI]: 33.6-40.4), and administration conformity was 37.7% (95% CI: 26.2-50.7). Low administration conformity was primarily explained by incorrect indications for RDP use. Seemingly important determinants of higher conformity were prescriber's speciality in palliative care, use of preprinted orders, pharmacist involvement, and hospitalization in the palliative care unit.
CONCLUSION: This study highlights important gaps in the use of RDPs in our institution. Health-care provider training appears necessary in order to ensure adequate conformity and allow for further evaluation of RDP effectiveness.
Quand j'ai accepté le principe de cette intervention, un collègue m'a suggéré de rendre compte de mon expérience comme premier titulaire de la Chaire "Religion santé et spiritualité", à Québec. Qu'est-ce que j'y ai aprris ? Je vais donc tenter de relever ce défi. Quelques énoncés centraux peuvent résumer cette expérience. En voici deux, pour commencer ; un troisième arrivera en conclusion.
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Cet article vise à présenter la culture philanthropique en exposant brièvement son histoire et sa situation au Québec, ainsi que ses principales caractéristiques. Nous mettons de l'avant des manifestations concrètes de cette culture en prenant appui sur la Maison Michel-Sarrazin, où s'actualise le don philanthropique, et l'Institut Mallet, qui a pour mission son avancement.
C'est en février dernier que la 5e édition du Guide pratique de soins palliatifs de l'Association des pharmaciens en établissements de santé du Québec (A.P.E.S.) a été publié en version numérique. Cette publication est le fruit du travail bénévole des membres du Regroupement de pharmaciens experts (RPE) en soins palliatifs de l'A.P.E.S. Qui sont-ils ? Quel est cet ouvrage ?
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La possibilité pour les personnes gravement malades de terminer leur vie à domicile constitue un objectif à atteindre pour le gouvernement français et celui du Québec (plans 2015-2018.fr ; 2015-2020. qc). A cet effet, en 2016, la loi Claeys-Leonetti a été instituée en France (Editeur officiel de la République française, 2016). Au Québec, la loi concernant les soins de fin de vie a été votée en 2014 (Editeur officiel du Québec, 2014). Cette dernière permet aux personnes en fin de vie de demeurer chez elles, si elles le désirent, en disposant de ressources qui améliorent leur qualité de vie tout en réduisant leur vulnérabilité. Toutefois, la réalisation de cet objectif soulève d'importants enjeux comme l'épuisement des proches, la fragilisation du lien social pouvant mener à l'isolement social, et les limites du bénévolat en soins palliatifs. Afin de composer avec ces enjeux, le Québec (Qc) et la France (Fr) sont confrontés à la nécessité de faire évoluer leur modèle de soins palliatifs et d'accompagnement en fin de vie.
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Au Québec, le rôle des maisons de SP est central dans l'offre de soins en fin de vie. Avec l'évolution et le vieillissement de la société, des lois et du travail, qui se complexifient, les soignants et l'ensemble des intervenants se voient exposés à une demande émotionnelle croissante combinée à d'autres facteurs de stress. Pourtant, aucun programme visant à favoriser le bien-être au travail pour ce type d'intervenants ne semble disponible au Canada. S'inspirant d'écrits et d'expériences internationales, un processus novateur permettant l'élaboration et la mise en oeuvre d'un programme de bien-être pour intervenants en maison de soins palliatifs (SP) a été entrepris suivant l'influence de la recherche-action. L'article décrit cette démarche de coconstruction. Ce type d'innovation pourrait permettre l'amorce d'une transformation systémique reconnaissant l'importance de soutenir les acteurs den SP pour offrir des soins de fin de vie de qualité.
OBJECTIVE: To explore the extent to which family health clinics in Ontario and the eastern regions of the province of Quebec provide palliative care.
DESIGN: A cross-sectional survey.
SETTING: Ontario and the eastern regions of Quebec.
PARTICIPANTS: The clinic leads of a select group of family health clinics with patient enrolment models in Ontario and the eastern regions of Quebec.
MAIN OUTCOME MEASURES: The types of palliative care services that the clinics provide, as well as the enablers of and barriers to providing palliative care within the 2 provinces.
RESULTS: The overall response rate was 32%. Clinics in both provinces reported providing palliative care to ambulatory patients (83% of Ontario clinics and 74% of Quebec clinics). Only 29 of 102 (28%) Ontario clinics provided on-call services themselves, compared with 31 of 34 (91%) Quebec clinics, with the resulting effect being that more patients were directed to emergency departments in Ontario. Access to palliative care specialist teams for support was higher in Ontario than in Quebec (67% vs 41%, respectively). In Ontario, 56% of practices indicated that they had access to palliative care physicians who could take over the care of their patients with palliative care needs, but a lower number (44%) actually handed over care to these physicians.
CONCLUSION: A group of clinics are providing full palliative care services to their own patients with palliative care needs, including "on-call" services and home visits, and these serve as role models. In Ontario in particular, substantial gaps still exist with respect to clinics providing their own after-hours coverage and home visits; many rely on other services to provide that care. In Quebec, lack of access to palliative care specialist teams appears to be a key challenge in the areas included in this survey. This survey could help policy makers and funders of health care services ensure that appropriate conditions are put in place for optimal palliative care provision in these clinics, such as coordinating access to on-call coverage and support from palliative care specialist teams, as well as providing education to all physicians and adequate remuneration.