Étude de l'expérience de la prise de décision substituée par des proches de patients en contexte de soins palliatifs

Authors: Bouchard, Pascale
Advisor: Martin, PatrickLavoie, Mireille
Abstract: The philosophy of palliative care emphasizes the respect for persons and their autonomy (Ho, 2008) and is a main concern for clinical practice (Randall & Downie, 2006). The decision making process for patients at end-of-life falls within the implementation of people’s right to autonomy. Critically ill patients can’t always decide for themselves tough. Health professionnals must then depend on support from close family members and try to get their perceptions of the situation in order to decide for proper care and treatments for the patient. We have to admit that they are better positioned to take a decision since they know the patient well. Plus they are best suited to represent and defend their interests (Meeker & Jezewski, 2004). In this process, it’s important for both sides, family members and health professionnals, to keep in mind that the main focus here is the patient, with the intention of maintaining its autonomy as long as possible. Although, we have to question ourselves as to how this experience is for family members, to better understand the emotion or discomfort they go through while deciding for a relative. It must be even more uncomfortable when no discussion has taken place prior or before, between relatives regarding end-of-life care. Thanks to this survey, we have come up with a number of possible approaches to help nurse support families having to decide for a relative and also following a patient’s death. The objective of this research project was to have a better understanding regarding relatives having to take decisions for a close family member, in the context of palliative care. It seems that we find hardly no data available in literature. In fact, only few surveys were realised to help better understand the decision-making process but up until now our understanding of how families go through this experience is incomplete. In the end, results indicate that in our society, there is still confusion for the expression “palliative care” as to how it is used by even health professionals themselves –the term is often mis-used. The lack of ressources is noticeable in our Quebec health system plus access to care and services is more complicated. With our results, the decision making process would be facilitated by: putting more emphasis for nurses and other health professionals towards relative, by having good knowledge of patient’s wishes and by getting, from care-givers, all the information needed in the decision making process. Although this decision-making process could be influenced by some inconvenient such as conflicts within family, by a bad attitude by health professionals and by a lack of information. Our results also indicate that relatives based most of their decision on the hope that their loves-one do not suffer. Several close family members have experienced a sense of guilt and have often questioned themselves to figure out if they had made the right choice. All participants have indicated that despite the guilt and concerns, they are in peace with their decisions. For must of them, the death of a family members has had a positive impact in their life. Finally, the results of this survey show that a nurse must offer a warn support by considering the patient as a human being until death, while respecting the needs of relatives. Furthermore, the nurse must be available to communicate, in writing or verbally, to close relatives, all information needed to understand the situation.
Document Type: Mémoire de maîtrise
Issue Date: 2019
Open Access Date: 12 July 2019
Permalink: http://hdl.handle.net/20.500.11794/35454
Grantor: Université Laval
Collection:Thèses et mémoires

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