Original Title: Avis: Expression des volontés au regard des objectifs de soins et de la décision relative à la réanimation cardiorespiratoire

Authors' objectives: The goals of care designation process falls under the responsibility of the physician or specialized nurse practitioner (SNP), and results from a discussion they have with the patient or the patient’s representative where applicable, on a voluntary and ongoing basis. This exchange provides an opportunity to explore the patient’s values and life plans, to evaluate and clarify their understanding of their condition, to share prognostic information, and to review clinically-indicated care. This process helps to develop or strengthen the trust relationship between the healthcare professional and the patient (or user), while improving the experience of patients and their relevant family members and friends. Documented in this way, the goals of care designation process serves to: 1) guide interventions that are clinically indicated and consistent with the patient’s life plans, both immediately and in anticipation of future deterioration in their health; and 2) identify those who are likely to benefit from palliative and end-of-life care. Given the complexity of the process, interprofessional collaboration is often required [CMQ, 2023]. In 2016, INESSS published a toolkit to promote the harmonization of practices relating to the goals of care designation process in healthcare facilities [INESSS, 2016a]. The use of these tools has led to some harmonization of practices. However, it has also highlighted certain shortcomings and issues in its application in the field for both the public and the various players within health and social service facilities. Among other points, this raises questions about compliance with care orientations, particularly when it comes to transferring people living in CHSLDs to healthcare facilities. It has been deemed necessary to clarify certain aspects of the documents and tools published in 2016 by INESSS, including: • The use of a common term to name the process (i.e., care level versus medical intervention level versus goals of care); • How a goals of care designation is determined, since in clinical practice the process would tend to be associated with a static state of affairs (proposed treatments) rather than an evolving process; • At which target populations the process is aimed; • How goals of care are interpreted and distinguished from a decision about cardiopulmonary resuscitation (CPR); • How to document a care goal and a CPR decision; • The means used to store and make the completed form(s) available between members of the same clinical team, between different teams in the same care environment, and between teams in different care and residential settings. Due to concerns about operationalizing the goals of care designation process, the Direction générale des affaires universitaires, médicales, infirmières et pharmaceutiques (DGAUMIP) of the Ministère de la Santé et des Services sociaux (MSSS) mandated INESSS to: • update the document on norms and standards (“Les niveaux de soins: normes et standards de qualité”), the “Levels of care and CPR” form and the guide to using the form [INESSS, 2016a]; • clarify various process-related concepts, through an examination of best practices, to better support the different stakeholders by clarifying the respective roles and responsibilities of patients, representatives and care providers throughout the process. It should be noted that the mandate initially formulated by MSSS called for an evaluation of the relevance of expanding the guide to include other ways of expressing wishes, according to the person’s health condition. During initial discussions with various key players, it became clear that, given the range of existing means in Québec to document advance care planning (advance medical directives (AMDs), mandates, living wills, etc.), it was preferable to focus solely on clarifying and implementing the process for discussing and formulating a care goal. It will be important, however, that the understanding and application of these different approaches are well-understood and well-connected to each other.

Authors' results and conclusions: RESULTS: The consultations and the literature review highlighted three overall findings regarding the process currently in use in the Québec healthcare network: • There is a lack of harmonization of practice in the process of designating and interpreting a care goal; • Issues persist regarding the validity of the documentation of wishes regarding CPR; • The process is hampered by barriers to access to goals of care forms and, consequently, to documented information about a person’s wishes.

Authors' recommendations: (Recommendation #1): desirable in Québec’s various organizational documents, particularly those from professional orders.(Recommendation #2): In order to promote achieving the objectives of the goals of care designation process, and to facilitate communication between patients, their relevant family members and friends, and healthcare teams, INESSS recommends adopting the following definition: The goals of care designation process results from a discussion between the patient and the care team on a voluntary and ongoing basis. This exchange makes it possible to explore the patient’s values and life plans, to evaluate and clarify the patient’s understanding of their condition, to share prognostic information and review clinically-indicated care, to develop or strengthen the trust relationship and to improve the experience of patients and their relevant family members and friends. Documentation of the discussion and the decisions made helps to guide interventions, both immediately and in anticipation of future deterioration in the patient’s health, and to identify those with palliative and end-of-life care needs. (Recommendation #3): To simplify and clarify goals of care categories, INESSS recommends that there be three rather than four classifications, and that they be renamed and redefined as follows:  Goal P - PROLONGATION of life through all care necessary. This goal aims to prolong life with all care necessary if these interventions are clinically indicated. However, a patient or their representative may refuse CPR in the event of cardiorespiratory arrest, while accepting all life-prolonging care.  Goal E - EQUILIBRIUM of care between prolonging life and comfort. This goal aims to achieve a balance between life-prolonging care and physical, psychological and spiritual comfort. The care offered is clinically indicated and aims to correct or limit deterioration in the person’s health and to maintain comfort. It is further noted that interventions can cause discomfort that is acceptable to some persons, but not to others. It is important to discuss and provide sufficient and relevant information (on benefits and associated risks) for shared decision-making regarding emergency intubation. This discussion enables the patient, or their representative where applicable, to express whether emergency intubation is (dis)proportionate or (un)acceptable. Following this discussion, the patient (or their representative) may choose to accept, for example, clinically-indicated emergency intubation; some may refuse it, while still others may accept it for a limited time. This information must be documented in order to provide clear guidance to the care team who would be called upon to manage the patient in an emergency situation.  Goal C - COMFORT of the patient without the aim of prolonging life. The primary aim of this goal is to provide comfort through all care necessary, rather than to prolong life. The care offered is aimed exclusively at managing symptoms, with a view to maintaining physical, psychological, and spiritual comfort. A treatment usually given for curative purposes can be offered, but only because it represents the best option for relieving discomfort. (Recommendation #4): In order to promote both timely initiation and equitable access to the process, INESSS recommends that benchmarks be adapted as follows:  Discussion of goals of care is part of good practice and should, according to clinical judgment, be initiated and continued throughout each person’s care trajectory. In particular, this discussion should be initiated in the event of the diagnosis of a serious chronic illness or, a major neurocognitive disorder (while the person is still able to express their wishes), a high probability of deterioration or hospitalization or a risk of complications during surgery or from other invasive procedures; at the time of admission to an emergency department, acute care, intensive care, a CHSLD, or a seniors’ home; and with any person whose prognosis is reserved (in palliative and end-of-life care). The discussion must also take place with any person who requests it, when a person is receiving home support services or if there is any mention of someone having documented AMDs. (Recommendation #5): To ensure that the team that would be caring for the patient in an emergency situation understands the type of care to offer, INESSS recommends adding the following to the form:  points to be discussed during the designation process, such as health status, values, preferences, fears and the clinical context of the discussion;  a space for documenting information provided by relevant family members and friends that may help clarify the patient’s wishes. (Recommendation #6): In order to clarify the concept of capacity to discuss and express a care goal, as well as the responsibilities of the representative for a person deemed incompetent where applicable, INESSS recommends:  including the criteria for evaluating capacity, as well as information on the roles and responsibilities of representatives, in the accompanying guide;  clarifying the information to be included on the form regarding the capacity of a minor aged 14 years and over or of an adult;  indicating whether the person is a minor on the form;  documenting the information regarding the representative for an incompetent patient on the form. (Recommendation #7): To ensure continuity and fluidity along the care and service continuum, INESSS recommends: 7.1 adapting the criteria for reviewing the process and adding these to the form, specifying that the discussion must be repeated on a regular basis and revisited in the following situations:  at the time of a new admission or, if relevant, at discharge;  when there is a significant change in the patient’s health;  upon a change of the living or care environment;  at the request of a patient or a patient’s representative;  at least once a year for people living in a CHSLD or seniors’ home;  if the care team indicates a need for a review. 7.2 adding a space on the form to document the revision. (Recommendation #8): In order to support care teams during discussions on goals of care, INESSS recommends:  clarifying the procedures for expressing existing wishes;  including mention in the accompanying guide and on the form, of the need to request a copy of any existing documents on previous advanced wishes, if available. (Recommendation #9): In order to provide sufficient space for documenting the points discussed and to more precisely capture the interventions to be offered, INESSS recommends:  removing the description of pre-hospital interventions from the form;  adding an indicative table to the accompanying guide, listing the pre-hospital procedures that can be offered according to each care goal. (Recommendation #10): Regarding cardiopulmonary resuscitation (CPR), INESSS recommends that the decision not to attempt CPR be explicitly designated on the goals of care form as a do-not-resuscitate (DNR) order. This order must be duly completed by an authorized professional when:  CPR is not clinically indicated;  the goal of care is only comfort;  the patient refuses CPR. (Recommendation #11): In order to clarify the categories of goals of care, INESSS recommends that the discussion and documentation of wishes regarding a possible transfer to a hospital for persons living at home or in other residential settings, or for inter-hospital transfers, be documented on the form in a space provided for this purpose. (Recommendation #12): To ensure optimal deployment and adoption of the goals of care designation process, INESSS recommends the development and implementation of diverse training methods for professionals called on to play a role in the process, such as continuing education accredited by various professional orders, training modules in academic programs, mentoring activities and relevant knowledge transfer tools (e.g., webinars, podcasts). Such training sessions would focus in particular on:  developing communication skills in difficult discussion situations (see recommendation #13);  the entirety of the process;  the use of the revised goals of care / CPR form and other associated tools. (Recommendation #13): To meet the support needs of care teams, particularly regarding contentious situations where there is a discrepancy between a patient’s and/or a relevant family member or friend’s requests and what is clinically indicated, INESSS recommends:  developing training and awareness-raising activities on the clinical, ethical, and legal dimensions, to develop the competencies of care teams in dealing with situations of conflict;  establishing bodies within facilities that can provide medical, ethical and legal insight and perspectives to support patients, their relevant family members and friends, and care teams in discussions and decision-making regarding the designation of goals of care;  creating a practice community specifically focused on the goals of care designation process. (Recommendation #14): In order to monitor process implementation, INESSS recommends taking the following measures:  setting up a structured process for implementing the revised form, accompanying guide and associated tools;  establishing an implementation monitoring committee;  identifying and monitoring implementation indicators for the goals of care designation process, such as: - number of trained care providers (by setting, specialty, etc.); - number of facilities that have implemented the process and revised tools; - the proportion of patients targeted by the process for whom a valid goals of care form is present in their medical file; - level of satisfaction according to patients, their relevant family members and friends and care providers. (Recommendation #15): To promote respect for patients’ wishes regarding the care they deem acceptable, INESSS recommends:  establishing and implementing procedures to raise public awareness of the existence and relevance of the approach for designating goals of care;  distributing information tools to help patients and their relevant family members and friends prepare for the process;  developing and distributing an information tool specific to the CPR discussion (on benefits, limits and risks associated with these maneuvers, do-not-resuscitate orders, etc.). (Recommendation #16): To ensure that the wishes of patients, or their representatives, living in private, intermediate, familytype or assisted-living facilities are respected, particularly regarding the refusal to have resuscitation maneuvers attempted, INESSS recommends developing and distributing a decision-support tool to guide institutional home operators and their staff on the actions to carry out and measures to be taken in an emergency situation. (Recommendation #17): To ensure compliance with the information documented on the form (“Goals of care and CPR decision”), INESSS recommends that only the signature of the physician or specialized nurse practitioner (SNP) be kept on the form, and that the signature of the patient or representative be removed. This change involves:  modifying the MED.-LEG. 3 protocol regarding the validity criterion relating to the patient’s or representative's signature on the standardized form;  circulating information to all authorities and players involved in situations covered by the protocol;  modifying the facility policies and procedures concerned. (Recommendation #18): To ensure that the wishes expressed by a patient or their representative during the goals of care designation process are respected, INESSS recommends:  implementing a method and a process enabling the persons concerned to have timely access to the goals of care form, for all care providers in the institutions and facilities of the healthcare network. According to the various stakeholders consulted, the Québec Health Record (DSQ) or other systems currently under development would appear to be the most appropriate way to meet this need;  identifying and deploying ways to transmit and save the form for access in emergency situations, particularly by paramedic ambulance technicians, in residential settings such as the home, facilities for seniors or intermediate, family-type or assisted-living residences;  systematically giving a copy of the completed form to patients who visit outpatient clinics or at discharge from hospital;  informing patients/representatives that they are responsible for making the form available in the patient’s home or other residential setting.

Authors' methods: To fulfil the mandate, an integration of knowledge from a rapid review of the literature, as well as contextual and experiential data, was conducted. The aim of the literature review was to identify the various schools of thought, trends, positions, and recommendations from different organizations, provinces, or countries regarding the process of designating goals of care and CPR decisions. More than 125 people (clinicians, managers, professionals, healthcare technicians and primary caregivers) took part in the work through advisory or stakeholder committees or through focus group consultations.

Project Status: Completed

URL for project: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/expression-des-volontes-au-regard-des-objectifs-de-soins-et-de-la-decision-relative-a-la-reanimation-cardiorespiratoire.html

Year Published: 2024

URL for published report: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/expression-des-volontes-au-regard-des-objectifs-de-soins-et-de-la-decision-relative-a-la-reanimation-cardiorespiratoire.html

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: Canada

Province: Quebec

Organisation Name: Institut national d'excellence en sante et en services sociaux

Contact Address: L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369

Contact Name: demande@inesss.qc.ca

Contact Email: demande@inesss.qc.ca

Copyright: L'Institut national d'excellence en sante et en services sociaux (INESSS)