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.
Palliative care may be an opportunity to discuss cancer family history and familial cancer risks with patients' relatives. It may also represent the last opportunity to collect, from dying patients, clinical data and biospecimens that will inform cancer risk assessment and prevention in their surviving relatives. This study aims to explore the perspectives of cancer patients' relatives about cancer heritability, addressing cancer family history, and performing genetic testing in palliative care settings. Thirteen first-degree relatives of cancer patients who died in palliative care participated in the study. Two focus groups were conducted and transcribed verbatim. Two independent coders conducted a thematic content analysis. The themes included: (1) Knowledge of cancer heritability; (2) Experiences and expectations regarding cancer family history discussions, and (3) Views on genetic testing in palliative care patients and DNA biobanking. Participants seemed aware that cancer family history is a potential risk factor for developing the disease. They considered the palliative care period an inappropriate moment to discuss cancer heritability. They also did not consider palliative care providers as appropriate resources to consult for such matters as they are not specialized in this field. Participants welcomed DNA biobanking and genetic testing conducted at the palliative care patients' request. Cancer occurrence within families raises concerns among relatives about cancer heritability, but the palliative care period is not considered the most appropriate moment to address this issue. However, discussions about the risk to cancer patients' relatives might need to be considered on a case-by-case basis.
Cancer family history is not systematically assessed during the cancer care trajectory. Palliative care may emerge as the last opportunity for health professionals to collect, from dying cancer patients, family history and biological samples that could inform relatives’ cancer risk assessment and management. At-risk relatives can then be offered genetic counseling and testing and preventive strategies if needed. Discussions on cancer heritability between patients, family members, and providers may become more frequent in palliative care due to increasing public awareness about advances in genomics and risks associated with a cancer family history.
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Addressing the concerns of end-of-life patients or their relatives about their family history of cancer could benefit patients and family members. Little is known about how palliative care providers respond to these concerns. The purpose of this pilot study was to assess palliative care providers' knowledge about familial and hereditary cancers and explore their exposure to patients' and relatives' concerns about their family history of cancer, and their self-perceived ability to deal with such concerns. A cross-sectional survey was conducted in the Quebec City (Canada) catchment area among palliative care professionals. Fifty-eight palliative care professionals working in hospice, home care and hospital-based palliative care units completed the questionnaire. All physicians and 63% of nurses occasionally addressed concerns of patients and relatives about their family history of cancer, but they reported a low confidence level in responding to such concerns. They also showed knowledge gaps in defining features of a significant family history of cancer, and most (78%) would welcome specific training on the matter. Our findings highlight the relevance of offering education and training opportunities about familial cancers and associated risks to palliative care providers. The needs and concerns of end-of-life patients and their families need to be explored to ensure palliative care providers can adequately assist patients and their relatives about their family history of cancer. Ethical implications should be considered.
Une équipe multidisciplinaire de l'hôpital de gériatrie de Genève a présenté le cas d'un malade, lors de la table ronde sur la multidisciplinarité organisée dans le cadre du congrès sur les soins palliatifs de Genève les 15 et 16 septembre 1988. Cet article aborde l'organisation de cette prise en charge et des difficultés dans l'équipe.
Ce programme de recherche avait pour objectif d'avoir une meilleure compréhension de la sédation en fin de vie telle qu'elle est pratiquée au Québec en soins palliatifs. La première étape a défini les pratiques de sédation des médecins selon deux variables, le pronostic et le type de souffrance. Pour la seconde partie de l'étude, un échantillon de médecins pratiquant les soins palliatifs au Québec a été utilisé afin d'identifier les
principaux aspects de leurs pratiques en matière de sédation des patients en fin de vie.
Cet article est une version enrichie du texte de la conférence plénière que le Docteur Louis Roy a présenté lors du 2ème congrès international francophone de soins palliatifs et 23ème congrès du Réseau. Il traite des soins palliatifs au Québec, de la situation actuelle et des défis pour l'avenir.
Dans un premier temps, l'auteur présente la situation socio-politique des soins palliatifs au Québec comparé au modèle anglais d'organisation des soins. Il présente ensuite les orientations prioritaires 2007-2012 du Programme québécois de lutte contre le cancer. Il propose ensuite des perspectives de développement à privilégier.
Source de confusions et de vives contestations, la sédation en fin de vie est une question complexe documentée depuis seulement une quinzaine d'année. Cet article nous propose une revue de la littérature sur le sujet et nous montre à quel point les enjeux conceptuels et éthiques ainsi que les pratiques cliniques liés à la sédation en fin de vie sont nombreux, complexes. En guise de conclusion, l'auteur tente de nous proposer une définition de la sédation en fin de vie pour donner une certaine cohérence à cette thématique.