INTRODUCTION
The philosophy of palliative care places respect of the individual and patient autonomy at the center of clinical practice concerns (Randall & Downie, Reference Randall and Downie2006). At end of life, an “aspect of worth is the need for individuals to feel autonomous and have a sense of meaning of purpose in life” (Kinghorn & Gaines, Reference Kinghorn and Gaines2007, p. 116). Numerous studies affirm that end-of-life patients place a high level of importance on respect of their autonomy (Bottorff et al., Reference Bottorff, Steele and Davies1998; Bolmsjö, Reference Bolmsjö2000; Cohen & Mount, Reference Cohen and Mount2000; Vig & Pearlman, Reference Vig and Pearlman2003; Carter et al., Reference Carter, MacLeod and Brander2004; Volker et al., Reference Volker, Kahn and Penticuff2004) from every standpoint, from deciding to stay in bed or sitting in an armchair to being able to perform their ablutions in the morning or walk to the bathroom, accept care and treatment, or refuse them. It is recognized that the exercise of autonomy influences feelings of dignity and quality of life of end-of-life patients (Chochinov et al., Reference Chochinov, Hack and McClement2002; Buckley & Herth, Reference Buckley and Herth2004). This may explain why reference documents such as The Model to Guide Hospice Palliative Care (Canadian Hospice Palliative Care Association, 2002), the Hospice Palliative Care Nursing Certification (Canadian Nurses Association, 2012), and the Plan directeur de développement des compétences des intervenants en soins palliatifs (Direction de la lutte contre le cancer, 2008) clearly invite healthcare providers to support autonomy and desire for control or independence while maintaining patients' capabilities.
Autonomy has been defined as “a capacity for self-rule, a quality inherent in rational beings that enables them to make reasoned choices and actions based on a personal assessment of future possibilities evaluated in terms of their own value systems” (Pellegrino, Reference Pellegrino, Allebeck and Jansson1990, pp. 4–5). It is linked as such to the possibility to decide, make choices, or act by oneself according to what is important for the person. Autonomy is often associated indistinctly with the concepts of personal identity or independence; autonomy can also be distinguished from a strictly individualist perspective which, Shirley (Reference Shirley2007) writes, represents a “narrow understanding of autonomy” (p. 15). For Jollien (Reference Jollien2010), writer and philosopher, “Autonomy is consenting to need others. It is the opposite of independence” (free translation). In fact, literature and research tend to demonstrate that the relational aspect of autonomy is “not a necessary evil but rather one of its signature traits” (Lavoie et al., Reference Lavoie, Blondeau and Picard-Morin2011, p. 52). So, it seems that the experience of autonomy is cocreated, therefore necessarily involving others. As healthcare professionals, autonomy calls and invites us to improve our practices to better support our patients. As such, this could contribute to developing the patient-centered approach currently highly valued in healthcare.
A research project was undertaken to describe changes following the integration of a healthcare approach that focused on the expression and respect of a person's autonomy in a palliative care environment. The approach chosen was that of the humanbecoming school of thought developed by Parse (Reference Parse1998; Reference Parse2007; Reference Parse2010), a theorist nurse. Its focuses on notions embraced by palliative care, such as the respect of a person's choices, desires, and values; quality of life; hope; and the preservation of human dignity. However, although this approach has already been integrated into psychiatry, surgery, and acute care medical units (Northrup & Cody, Reference Northrup and Cody1998; Legault & Ferguson-Paré, Reference Legault and Ferguson–Paré1999; Mitchell, Reference Mitchell and Parse1999a), it has not been evaluated as yet in the context of end of life, even though some authors have highlighted its relevance (Lee & Pilkington, Reference Lee and Pilkington1999; Stanley & Meghani, Reference Stanley and Meghani2001; Hutchings, Reference Hutchings2002). Finally, the humanbecoming approach is also known to support the development of person-centered practices (Mitchell & Bournes, Reference Mitchell and Bournes2000; Mitchell et al., Reference Mitchell, Bournes and Hollett2006; Bournes & Ferguson-Paré, Reference Bournes and Ferguson–Paré2007).
More precisely, this approach includes a theory and a practice methodology. The theory addresses all health professionals, which corresponds quite well to the “interdisciplinary” philosophy of palliative care. It represents a concept of the person based on four synthesized assumptions. These are that humanbecoming is: (1) structuring meaning, freely choosing in situation; (2) configuring rhythmical patterns of relating with humanuniverse (such as others, ideas, objects); (3) cotranscending illimitably with emerging possibles (such as hopes and dreams); and (4) cocreating a seamless symphony (a personal history) (Parse, Reference Parse1998; Reference Parse2007; Reference Parse2010). The humanbecoming practice methodology (Parse, Reference Parse1998; Reference Parse2011), directed more specifically at nurses, contains three dimensions derived from the first three assumptions of the theory, with the fourth arising from the previous. Here, nurses are invited to be with patients while those patients illuminate their situations, synchronize their rhythmical patterns, and mobilize transcendence. The cornerstone of this approach is “to be truly present with people as they enhance their quality of life” (1998, p. 69), notably through face-to-face discussions, lingering presence, and, sometimes, silent immersion. True presence serves to value “the others' human dignity and freedom to choose within situations” (1998, p. 76) and represents being with persons while they cocreate their becoming. Nurses are witnesses to the expression of wishes and of what is important to the person at the moment; they can thus contribute to respecting wishes. Finally, although the term “autonomy” is not explicitly mentioned in this approach, the notion of human freedom stemming from existential philosophy is central. Defined as “contextually construed liberation” (p. 12), freedom is also said to be situated, meaning an “unencumbered option to choose in each situation” (p. 98). As existentialist philosopher Sartre (Reference Sartre1956) stated, “The technical and philosophical concept of freedom […] means only the autonomy of choice” (p. 483); more generally, philosophy associates autonomy with “moral freedom” and, from Jacob's point of view (Lalande, Reference Lalande2002), “the freedom of man” p. 101, free translation).
Given the potential contribution of this approach to encouraging the expression and respect of end-of-life patients' autonomy, the goal of this project is to describe changes observed following the integration of the humanbecoming approach (Parse, Reference Parse1998; Reference Parse2007; Reference Parse2010) in a palliative care hospice in Quebec, Canada. More precisely, the research question was of the humanbecoming approach (theory, practice methodology and tools developed to support practice), what changes were observed in:
• the beliefs and practices of healthcare providers (nurses, doctors, social workers, volunteers, etc.),
• the concept and respect of autonomy by healthcare providers,
• the care and respect of autonomy experienced by patients' relatives,
• the consideration of patients' wishes through their documentation?
METHOD
Phases of the Method
This study adopted the Parse (Reference Parse2001; Reference Parse2011) pre-project – process – post-project descriptive qualitative design and also included specific consideration of the notion of autonomy. Its process phase (or implementation phase) particularly relied on Parse's teaching-learning (2004) and mentoring (2008) models. The study was approved by the ethics committee of Université Laval and the university's collaborative center.
Pre-project and Post-project Phases
The pre- and post-project phases consisted of collecting data from healthcare providers and relatives of patients through semistructured interviews with a research professional “not engaged in the day-to-day activity of the setting” (Parse, Reference Parse2001, p. 174). We decided at the onset of the project not to approach the patients, preferring instead to speak to their relatives, given the vulnerable state of the patients, their short length of stay, and their precarious state of health, and also in order to protect their intimacy and privacy. These phases also included collecting information from patients' medical records before and after the implementation phase. Collecting information involved systematically listing every item related to the consideration of wishes expressed by patients and means taken to respect these.
Questions in the interview grids (see Table 1) were identified from previous studies on the integration of the humanbecoming approach (e.g., Jonas, Reference Jonas and Parse1999; Legault & Ferguson-Paré, Reference Legault and Ferguson–Paré1999). Supplementary questions were added to account for our particular interest in patients' autonomy. The grids were validated during the first interview.
Table 1. Focus of questions
Adapted Process Phase
This phase consisted primarily of offering healthcare providers training sessions on the humanbecoming approach based on the teaching-learning model (Parse, Reference Parse2004). Particular emphasis was placed on the importance for researchers involved with the participants to consider the worth of being with them in teaching-learning experiences, as they cocreated new ways of “what is, with the was and will-be” (2004, p. 34). It was also established that this entire endeavor would unfold through “pushing-resisting as the risk of changing surfaces with certainty and uncertainty” (Parse, Reference Parse2004, p. 34) of sometimes ambiguous situations.
Likewise, this phase also served to provide guidance and support during the integration of this new approach into their practice. In this respect, the researchers were also inspired by the complementary mentoring model (Parse, Reference Parse2008), as mentoring is viewed as “a moment-to-moment unfolding of scholarly togetherness-aloneness (…) of coming to know the new” (p. 195). For example, this model invites researchers to offer deliberate availability, to be with the other in a nonintrusive way without judging, to move with the “cadent rhythms” with the other (and the milieu), and to respect disclosedness. (p. 197) Part of this phase also consisted of both the researchers and the participants codeveloping and coinventing integration and care tools in order to further aid their learning and practice.
Setting, Participants, and Recruitment Procedure
The setting of the project was a palliative care hospice that can accommodate up to 15 patients and their relatives. Before starting the project, the lead researcher contacted key staff at the institution (care coordinator, clinical instructor, and institution director) who confirmed their support and interest.
For the purpose of the project, participants were grouped into three categories: (1) nurses (n = 38); (2) other caregivers (such as physicians, social workers, pharmacists, care and volunteer coordinator, chaplain [n =15]; and volunteers at the bedside [n = 94]); and (3) patients' relatives. While the interviews were conducted (pre- and post-project), nurses and other caregivers were recruited by the coordinators, who invited them to contact the research professional. These participants had to have 1 year of work experience, work a minimum of 1 day per week, and demonstrate interest in sharing their values/beliefs concerning their practice. At pre-project, they were also required to show interest in participating in the integration of the approach. The coordinators were contacted directly by the research professional. Patients' relatives were approached by the care coordinator with the collaboration of one of the social workers. The relatives identified had to diligently accompany the patient and demonstrate interest in sharing their experiences.
Participants' consent was validated before each interview. Nurses and caregivers were invited to take part in various training sessions and integration activities. Their participation was voluntary and denoted their consent.
Finally, patients' medical files were chosen randomly from among all the medical files of patients who had died 2 months prior to the onset of the project and within 2 months following the end of the project. This selection was performed under the supervision of the institution director.
Data Analysis
At the end of the project, the descriptions of participants in the pre-project and post-project phases were analyzed following the Parse method (1998; 2001; 2011). The method involves reading and rereading the descriptions, listening to tapes, and analyzing and synthesizing emerging themes at the pre- and post-project steps for each source of data. Data were then synthesized further to highlight changes observed between the two phases. To ensure the validity of the results, the data were analyzed by both the research professional and the lead researcher. Each identified the themes and changes observed. They then compared the results of their analysis, returned to the verbatim where needed, and ultimately reached a consensus and made necessary changes. The accuracy of the changes observed was also confirmed by an expert in the human becoming approach. It is important to note that the thematic analysis of the descriptions was completed carefully to ensure respect, where possible, of the terms used by the participants. The purpose of this process following the completion of the study was to reliably and rigorously reflect the changes observed.
RESULTS
Participants
Semistructured interviews were conducted among 26 nurses (10 pre-project, 16 post-project), 25 other caregivers (10 pre-project, 15 post-project), and 10 relatives of patients (5 pre-project, 5 post-project). Data were also collected from the medical files of 15 patients before, and another 15 after the implementation phase. During the implementation phase, 31 nurses and 35 other caregivers (10 other healthcare providers and 25 volunteers) participated in the initial training and different workshops.
Description of Training and Tools
A report on the teaching-learning sessions and mentoring offered during the 12-month implementation phase is presented in Table 2. Teaching-learning sessions included lectures, reflection and integration exercises, and reflexive practice workshops stemming from case studies and real-life cases. In order to respect the rhythm of the institution and the caregivers, teaching-learning opportunities were offered repeatedly and at different times of the day. During the implementation phase, one of the co-researchers made sure that someone was on hand constantly at the institution to support the daily integration. Moreover, the lead researcher was present weekly for 3 hours during a 4 month period. This availability allowed her to exchange with caregivers on precise questions regarding the approach and on particular cases that emerged in their practice. An external expert in the humanbecoming approach participated in one of the workshops, bringing new insight and expertise to its integration. The purpose of these different strategies was to support and facilitate the transfer from theory to practice.
Table 2. Sequence and duration of teaching-learning sessions and mentoring
The tools were cocreated with care committee members composed of nurses from the institution and other caregivers interested in collaborating. There were two kinds of tools: integration and care tools. Among the integration tools, there was a document to support learning, including reflection exercises, a book containing daily excerpts from humanbecoming writings, a document summarizing responses to questions raised by caregivers directed at Dr. Parse, a binder containing select translated articles on the humanbecoming school of thought, and a poster inviting reflection (see Fig. 1). For the care tools, caregivers developed three lists of questions most appropriate to the palliative care context inspired by those already proposed in the literature (see e.g., Saltmarche et al., Reference Saltmarche, Kolodny and Mitchell1998; Mitchell, Reference Mitchell, Alligood and Tomey2006). These lists were designed to be used by nurses interacting with patients and liaison nurses visiting patients, as well as during meetings with the interdisciplinary team. Moreover, the part of the nursing care plan usually reserved for the description of objectives, interventions, and evaluation was replaced by a section focusing on the perspective of the person and inspired by the documentation method proposed by Parse (Reference Parse2001) and Pilkington and Jonas-Simpson (Reference Pilkington and Jonas-Simpson1996). This section served to develop better knowledge of the patient's patterns of relations and priorities (demands, expectations, wishes) and the dimensions of the nurse–patient process.
Fig. 1. The text appearing on the poster can be loosely translated to: How would it be if in the presence of others … We would let them be and become? We would always center ourselves on THEIR perspective? We would give priority to THEIR values? We would harmonize our care to the colors of the relations they have weaved? We would meet them free of any prejudice? How would it be if we adopted the humanbecoming approach (Parse, 2003)?
Description of Changes
Following the implementation of the humanbecoming approach and the tools developed, the analysis of the participants' descriptions and patients' medical records indicated that different themes were emerging. The comparison of the themes before and after implementation indicated that changes had taken place in the beliefs and practices of caregivers, the concept and respect of autonomy by healthcare providers, the care and respect of autonomy experienced by patients' relatives, and the consideration of patients' wishes through their documentation. For each question, changes were transcribed in an order representing the importance assigned by the participants.
Changes Related to Nurses
First, we noted that it was important for nurses to offer the best possible care to make people comfortable and meet their needs. However, after the implementation of the approach, the nurses deemed it paramount to first take time not only to listen to patients' needs but also make sure they respected patients' choices, desires, differences, and dignity.
In the pre-project phase, the nurses mentioned that the priority in their eyes was to respect patients, notably by allowing them to choose between the possibilities offered. This value remained present in post-project, but was reinforced by the idea that the nurses must first get to know their patients and what they were becoming. In other words, instead of straightaway suggesting measures to favor patient well–being and risk sometimes imposing measures, the nurses were more inclined to listen to the priority needs of patients. A nurse stated, “It is to respect who they are by getting to know them, by seeing a bit more of what is important for them and their daily desires.”
Another value mentioned by the nurses in the pre- and post-project phases was to ensure availability. Availability first encompassed the idea of providing a discreet presence but then meant in the post-project phase to be present in order to show a true ability to listen. Some nurses mentioned what was then important to them: “It is to be authentic, to be able to show your true self, to be human before assuming the role as a nurse.”
The nurses then stated that they were satisfied with the care offered when they felt they had done their best; they mentioned that after the implementation they now took the time to take care of their patients and make sure they respected patient choices to improve their quality of life.
Finally, they themselves indicated in post-project that the integration of this approach led them to be more attentive and present for people, to learn more about their unique character and what they were currently experiencing. They achieved this by focusing their attention on continuity in care, by better respecting people's choices and by being less “rigid” in their care. The integration also led them to question and shed light on their practice and think about it. However, some nurses indicated that the approach did not modify their practice very much because they considered that they were already doing this, or that they had already heard something about the approach.
Among the desired changes in their practice, nurses maintained the wish to have fewer patients in order to have more time for them and their families. However, they added in the post-project phase that it was also to develop a better contact and do everything respectfully. Whereas they first expressed the wish for more freedom to do what they wanted and be listened to by the team about the care they had to offer, they later expressed their appreciation for being listened to and supported by the team.
Changes Related to Other Healthcare Providers
For other healthcare providers, the most important consideration of their practice was to develop a cordial relationship by being available and present; after the implementation, it was to be more person-centered through human contact and real listening. It was also interesting to note that the healthcare providers drew attention, in the post-project phase, to their concern for listening to the entire team. They focused particularly on the idea that understanding patients is more important, not only to ensure their comfort and meet their needs, but also to adjust to their rhythm and to take care of their entire well-being.
Values that guided their practice before the implementation consisted of creating a relationship by trying to listen to the person. However, the healthcare providers now mentioned that it was important not only to try to listen, but actually to listen to the patients' values without judging them. The idea of offering a helping presence became an element contributing to the satisfaction of providing care. Moreover, their priority, which consisted of respecting the patients by welcoming them as they were and by trying to meet their requests, changed to respecting what the patients wanted by getting to know them in the present moment and by adapting themselves to the patients' desires.
Finally, among the changes observed by the healthcare providers, they insisted on the fact that the integration of the approach led them to be more attentive to their patients in the present moment and to better accompany patients by adjusting themselves to what the patients said and by being more sensitive to change. A healthcare provider indicated: “This [the approach] helps me better to accompany people in what they live and not to attempt to interpret what they should live. I feel more aware of seeing people as changing human beings and I am more in harmony with this way of seeing people. This has the effect of not judging, of more respect and of better listening.” The majority of healthcare providers mentioned that the approach brought them to respect people more and to reposition their practice, and encouraged even greater discussion with team members. However, for three healthcare providers, the approach did not modify their practice much because they were of the opinion that it already corresponded to their values and that there was still work to do to define the role of other healthcare providers relative to its integration, given the fact that the methodology of practice was directed more precisely at nurses.
Changes Related to Respect of Autonomy
For nurses, although the concept of respect of autonomy continued to remain one of respecting the choices and actions of the person, in the post-project phase they abandoned the idea that this autonomy need be expressed in a framework that imposed limits such as presenting their arguments and their own choices, or that it might disturb the rhythm of the healthcare setting. The nurses indicated that in the future, they would focus on the need to follow their patients' rhythm by being with them rather than by deciding and acting on the patients' behalf or doing things for them, and also by respecting the patients' values and priorities, over and above their explicit language. To this end, a nurse said: “They are fragile, but in their eyes I see ‘I still want to be able,’ then eventually, I see when they tell us in their acts ‘now you can come close to me, you can do more for me.’”
For the nurses, contributing to the respect of a patient's autonomy went from an impression, to the affirmation of the fact to listening to patients' desires and being with them by accepting guidance from them and offering help. For nurses, it became more important to follow the rhythm of the person, even if they sometimes felt they were slower than other nurses because they sometimes had to wait a long time and forego the regular cadence of work.
For other healthcare providers, the respect of autonomy included the idea of allowing patients to act and to make their own choices within certain boundaries, one of which was the freedom of others around them. Whereas this respect was nuanced in the pre-project phase according to the knowledge and experience of healthcare providers, they now referred to the necessity to adapt themselves to what is important for the person. In this respect, a healthcare provider added that in his interventions he tried to align himself with what the person wanted or not, and “not with what I considered important for this person.” When confronted with a possible risk for patient safety, healthcare providers would suggest other ways for patients to do this or that instead of doing it for them. Finally, although from the onset healthcare providers mentioned their concern for respecting the rhythm of the person, this intention moved from an intention to an affirmation in the post-project phase.
Likewise for healthcare providers, contributing to the respect of autonomy in the pre- and post-project phases represented the idea of respecting patients' decisions and what they were able to do. However, following the integration of the approach, healthcare providers added that they must also respect what the patients did not want and their right to change their minds. There was a transition from the necessity not only to help patients, but also to let themselves be guided and to adjust to what the patients wanted by taking the time needed. A healthcare provider shared this example: “Me, I was used to help them eat at first. Now, I tell myself, look, if it takes time, let it go, wait, wait because it is so important. I was always taking the lead at the beginning.”
Changes Related to the Delivery of Care from the Families' Perspectives
The interviews conducted among patients' relatives revealed certain changes observed in the care experience coming from the nurses following the implementation of the approach. First, the relatives mentioned that during the pre-project phase, the nurses were taking the time to exchange with patients, listen to them, obtain information on their needs, and respect their choices. However, in the post-project phase, the families added that the nurses were now listening very much and were taking a lot of time with the patients to get to know them better and commit to an inclination and engagement based on patients' wills and needs. A relative said that a patient found them “really respectful and very attentive to her needs.” Another shared how the nurses “Always say I will come back to see you and if there is anything you need, do not hesitate, ring the bell, I am not far away. Yesterday, my mom was sick, she vomited, it was right away. They always came back when they said they would come back.” Moreover, in the post-project phase, we observed that the idea that nurses insist on providing care/treatment following a patient's refusal was abandoned, whereas the idea that nurses offered necessary support to patients so that they could do things themselves emerged.
In the post-project phase, the relatives considered that the nurses respected patient autonomy not only by letting them move and helping them, but asking them what they wished to do, by respecting choices made and by suggesting help for safety reasons, where necessary. In addition, whereas relatives noted that at the beginning the nurses could sometimes insist when a patient refused, they noted that after the implementation, and even though there were sometimes some limits, nurses respected the refusal expressed. Some relatives mentioned that “here, [they] do not force her to take something when she [the patient] refuses.”
Finally, although the practice methodology was not integrated specifically for other healthcare providers, the relatives noted a change in the attention paid to the patient and themselves. The relatives mentioned that not only were the healthcare providers even more considerate, supportive, and able to adjust themselves, but also that they asked for information on what the patient wanted, and respected it. A relative gave the following example: “They are respectful; she wanted to sleep alone and be left alone, so nobody entered.” In the same way, they added that the healthcare providers did more than to just talk to them when they met; the relationships were warm and reassuring, and the healthcare providers came to see them without imposing themselves.
Changes in the Documentation of Wishes
The analysis of the documentation on patients' wishes in their medical records first showed that the volume of information on this topic had increased significantly. In effect, during the pre-project phase, 11 medical records out of 15 contained little information; thereafter, 11 medical records out of 15 had more developed notes.
In the notes of the nurses in the post-project phase, we noticed that the recording of demands/desires and refusals/disagreements had doubled. Patient wishes for care and treatment were mentioned three times more often. We observed that comments related to some limits “imposed” in the pre-project phase were now absent in the files examined. Changes made to nurses' care plans served to provide details on what was important for patients, and their preferences. On a lesser scale, we also noted information on what was difficult for patients, their concerns, their significant persons, and a few nurses' activities.
For other healthcare providers, we observed that the comments recorded regarding patients' desires/demands had doubled. Whereas we noticed the cessation of notes concerning interventions aimed at “persuading” the patients, we now saw the appearance of notes concerning discussions with patients on treatment “proposals.”
DISCUSSION
Overall, we noted that the integration of the humanbecoming approach brought similar important changes to the beliefs and practices of all healthcare providers, in their concept and respect of autonomy, the care and respect of autonomy experienced by patients' relatives, and the consideration of patients' wishes in the documentation consulted. These changes are in line with the philosophy of palliative care and similar to those observed in other studies that integrate this same approach (Bournes, Reference Bournes2002; Bournes & Ferguson-Paré, Reference Bournes and Ferguson–Paré2007). Therefore, we will now discuss the changes observed in our research by grouping together similarities noted among our different sources of data.
A Focus Moving from Being Centered on the Task to Being Centered on the Person
First, we noted that the center of interest of all healthcare providers had shifted from the task to the person. Attention to performing tasks was replaced by attention centered on people and listening to them to get to know what was important to them. The intervention, care, or treatment was henceforth considered good if it corresponded foremost to the values of patients. As stated by Parse (Reference Parse2004), care centered on the persons corresponds effectively to “developing partnerships with patients, understanding the person's perspective and offering care from the patient's perspective” (p. 193). In other words, professional care should be personalized. This change in the healthcare providers' perspective concurs with the remarks of relatives who confirmed that following the implementation of the humanbecoming approach, the wishes of the person took precedence over the accomplishment of tasks.
Consequently, the implementation of this approach resulted in conventions, routines, and the need to perform being reassessed and abandoned by healthcare providers, where necessary. Although they wished to continue to feel useful, providers wanted to feel useful to the other by being careful to respect the choices and the quality of life of patients. They expressed an intention to stay active, not foremost as experts, but as human beings. According to the humanbecoming approach, patients are considered the experts on their health situation. However, this does not mean that healthcare providers felt that they had shelved their expertise. As mentioned by Mitchell and Bournes (Reference Mitchell and Bournes2000), it was simply a case of recognizing that “health professionals cannot live the lives of others, and although professionals can give advice, it is the patient (…) who must choose and act” (p. 207).
The Affirmation of the Priority to Respect the Person's Choices, Desires and Needs
Although healthcare providers' concerns regarding respect of patients' expressed choices, desires, and needs were present even before the beginning of the project, it now appeared to be a priority following the integration of the approach. In this sense, the nurses had, among other things, abandoned the idea of sometimes imposing or limiting patient choices to the ones they proposed on the basis of their evaluation of patient capacity, arguments based on “good care,” that is, good practice, and personal choice. Henceforth, they valued the patient's perspective and chose to let themselves be guided by the patient's values and unique character rather than their own values. In other words, we observed a change in the prioritization of a practice centered on the patient in which “Patient-centeredness involves providing care that is respectful of, and responsive to, an individual patient's preferences, needs, and values; it also involves ensuring that patient values guide all clinical decisions.” (Committe on Quality of Health Care in America, 2001; Goodridge & Duggleby, Reference Goodridge and Duggleby2010, p. 146). From this perspective, the nurses dared to reappraise certain conventions, protocols or care “contracts,” and mentioned that their professional autonomy was at the service of their patients' autonomy. The respect of the patients now extended beyond knowledge of the patients and their unique needs, excluded needless limits, and was open to new challenges. This aspect became a central element in nurses' satisfaction with the care they provided.
The other healthcare providers and volunteers also moved from intention to the affirmation of the importance of respecting patients' wishes. They indicated no longer “trying” to meet patients' expectations and offering choices, instead adapting themselves to the desires of the patients, to the patients' freedom to choose. We noted here a shift to the necessity to adapt to what matters for the person. Healthcare providers even seemed to place more emphasis on the freedom of the person than on their own expertise. However, they mentioned that some limits—such as the freedom of others—could sometimes direct them to take another path. And, to the extent that the humanbecoming approach supports the idea that freedom of choice is “located” within the limits of situations, this idea is not absolutely contradictory to the fundaments of the approach.
This eagerness to respect the choices of patients was also noted by the patients' relatives. According to them, not only were the healthcare providers considerate, but they also asked about patients' wishes and adjusted themselves to their demands to honor them. Following the implementation, some even noticed that they also respected refusals expressed, without insisting. We should add, however, that this does not mean that nurses, for example, only respected this refusal. In a humanbecoming perspective, they would remain vigilant witnesses of this refusal and stay in true presence while patients clarified their choices and the consequences, and explored other possibles. Moreover, healthcare providers' increased care in documenting demands, agreements, and refusals for care, and at the same time, the decrease and even the cessation of written commentaries indicating the imposition of limits or attempts to persuade patients, also reinforced this observation.
A Presence Moving from Being Available to True Listening
Following the implementation of the approach, all the healthcare providers insisted on the necessity of not only being available, but also of truly listening to the person and not just trying to. As stated by the healthcare providers, it is this listening, this human contact, which allowed them to be truly centered on patients, to understand who the patients were and who they were becoming, without judging them, and by respecting their choices, desires, and needs. Some mentioned that the approach even led them to be more attentive to members of the healthcare team. In addition, according to the testimony of relatives, it seems that the healthcare providers made sure that they took time to be with the patients, talk to them, and learn what they wanted in order to know and respect them better. The relationship between the healthcare providers and the patients seemed to have evolved from a social relation to a committed and loyal presence.
Moreover, it appeared that the emphasis placed on the notion of true presence in the humanbecoming approach encouraged the healthcare providers to get to know the patients in palliative care. Some nurses participating in the project of Mitchell et al. (Reference Mitchell, Bournes and Hollett2006) also mentioned that this new perspective had taught them to listen to the specific concerns of patients and their families, note that the patients were the best placed to judge their quality of life, and cease judging and labelling them. As the authors mentioned, “first and foremost, the theory helped them to listen to people in a way that was different and quite effective for improving quality of care” (Mitchell et al., Reference Mitchell, Bournes and Hollett2006, p. 219).
The Affirmation of the Need to Go with the Ever-Changing Rhythm of the Person
The implementation of this approach also created the opportunity for all healthcare providers to maintain the importance of harmonizing their efforts with the ever-changing rhythm of the person. Among the nurses, we noted a marked shift from the idea of implementing planned care by sometimes strongly insisting or even to imposing the care, toward the idea of listening to patients' perspectives and being attentive to what they were experiencing at the moment. Thus, the nurses no longer imposed the everyday/routine and work rhythm inherent in tasks to complete to be effective and perform. In this sense, the nurses mentioned that the approach brought them to question their practice and be less “rigid” in the care they administered.
For other healthcare providers, we noted their commitment to adjusting themselves to the rhythm of their patients to meet their desires and needs while remaining attentive to changes that could happen at the present moment. Then, it was not only about complying with what the persons wanted, but also what they did not want and their right to change their minds. In all cases, although this adjustment to the rhythms of patients was sometimes demanding and not always easy, the nurses and other healthcare providers mentioned how this is not only necessary, but also gratifying.
A Notion of Respect of Autonomy Now Including the Other
Finally, it was interesting to note that the notion of respect of autonomy among healthcare providers now included broader participation on their part. In other words, the nurses mentioned that the respect of patient autonomy consisted of “being with and letting oneself be guided by the persons who choose and act according to their own rhythm” rather than “let them decide and act.” In this sense, the other healthcare providers mentioned that it involved “letting oneself be guided and accompanied while adjusting” rather than “letting them participate according to their capacities by helping them and intervening”. This highlighted a change from letting them do, to being with while they do . As a result, the notion of autonomy here is distinguished from the notion of independence.
In fact, as Mitchell mentions, “Human beings live with certain unchangeable givens that may both enable and limit their journey through life”; we might add especially in end-of-life situations. So this leads to a view of freedom as “the paradoxical experience of restriction-freedom” (Mitchell, Reference Mitchell and Parse1999b, p. 161). In addition, if we believe that humans are “coconstituting ways of becoming” (Parse, Reference Parse1998, p. 42), the experience of autonomy is closer to that of Major and Pepin (Reference Major and Pepin2001) who, in the perspective of humanbecoming, define it as follows: “the dynamic potential of a person to express in his/her way of being able and in interrelation with the others, to create an original way to still be someone and to choose beyond the changes of life” (Major & Pepin, Reference Major and Pepin2001, p. 44, [italics ours]). Therefore, again, if we believe that humans coexist with others, the exercise of autonomy despite restrictions in certain situations such as illness or handicap can certainly be achieved through the participation of another. Patients moving under the watchful eye of a caregiver, choosing to continue to eat to please a relative, or asking a parent to decide the legacy of their assets continue to exercise their autonomy. As stated so well by Hewitt-Taylor, “An autonomous person can accept support and assistance from others, and can also choose to defer to others.” (Reference Hewitt-Taylor2003, p. 1327) This is how people continue, until the end, to forge their identity, to become human according to their values, dreams, and hopes.
In light of these results, it is important to note that the nurses and the other healthcare providers in particular used terms such as “true listening,” “adapt,” “adjust,” or “effect” to describe their beliefs, values, and care practice. However, these words are not part of the humanbecoming approach vocabulary. So what does this mean? Their choice of words might be explained by the fact that they are closely associated with their usual clinical practice, most probably for many years. Except for the nurses, healthcare providers did not receive any formal teaching-learning session on the methodology of practice of the humanbecoming approach. However, whereas the notion of “true listening” is not the exact equivalent of “true presence,” one might easily recognize that it can be difficult to truly listen without first being in true presence with the other. Moreover, these two terms are not completely irreconcilable. In addition, it is important to remember that this project did not aim to verify the extent to which the integration of the humanbecoming approach could lead healthcare providers to perfectly adopt its vocabulary. Rather the purpose of the study was to observe how the integration of this approach could change their beliefs, values, and care practices.
Limitations
One limitation of this project is the absence of descriptions/data from the patients themselves because, as mentioned before, of their vulnerable state, short length of stay, and precarious state of health, as well as to protect their intimacy and privacy. Although this was somewhat compensated for by perspectives from their relatives, it would have been best to interview the patients. In an end-of-life context, it is recognized that gaining access to this population is a challenge. Members of ethics committees and clinicians try to protect these vulnerable individuals from distress (McLoughlin, Reference McLoughlin2010). However, according to Chochinov (Reference Chochinov2009, p. 216), many studies indicate that the possibility of participating in research projects can have beneficial effects on patients. Chochinov concludes, “This does not mean that protective gates for vulnerable populations are not necessary, to a degree, but the danger of building those gates too high denies patients and families the opportunity to make autonomous, self-determined choices about participating in research. (Janssens & Gordijn, Reference Janssens and Gordijn2000; Addington-Hall, Reference Addington-Hall2002).” In addition, it is a given fact that if research aims to improve our knowledge of care for end-of-life patients, it would be desirable to take into account their perspective. This could be possible while also ensuring compliance with ethical standards of research (Nambisan, Reference Nambisan2010).
Another limit is the difficulty of ensuring that the teaching-learning sessions and mentoring provided to the healthcare providers was sufficient and uniform. For example, a healthcare provider could participate in the initial session and not participate in any other workshops despite the diversity of teaching-learning sessions available; on the contrary, another healthcare provider could have participated in all the sessions. Many factors should be taken into consideration here. First, given the heavy workload of healthcare providers, they sometime spoke of (with reason) the difficulty associated with taking part in the teaching-learning sessions despite proposed accommodations. Moreover, other projects (such as the projects on risk management and the development of a guide on oral care) also necessitated the attention and commitment of staff at the same time as this project. With respect to the volunteers, teaching-learning sessions were delayed for organizational reasons, and it was harder to reach more of them in a timely fashion. (However, it should be specified that workshops continued to be offered to all caregivers, including volunteers, after the end of the study, and continue to be offered even today). Finally, and in conformity with the spirit of the theory, participation in the study was voluntary for all healthcare providers. Ultimately, as reported elsewhere (Mitchell et al., Reference Mitchell, Bournes and Hollett2006) it was up to each healthcare provider to choose to engage in this reflective implementation process.
CONCLUSION
Despite these limitations, the project demonstrated that the integration of the humanbecoming approach in a palliative care environment can bring about significant changes in the beliefs and practices of healthcare providers, the concept and respect of autonomy by healthcare providers, the care and respect of autonomy experienced by patients' relatives, and the documentation of patients' wishes. The analysis indicates that important similarities can be noted between them: a focus moving from task-centered to person-centered; the affirmation of the priority of respecting patients' choices, desires and needs; a presence moving from being available to true listening; the affirmation of the need to move along with the ever-changing rhythm of the person; and the notion of respect of autonomy now including the other. However, the terms used by the participants such as “listening,” “adapting,” or “adjusting” do not necessarily reflect the humanbecoming approach. Yet, these terms indicate that a process of change is underway, which is far from insignificant. In fact, the integration of a new approach may initially require a certain “deconstruction” of our usual ways of thinking and acting, which can represent a long process. For example, whereas the idea of “being with the rhythms of the person” is not inherent in a previous notion of care, in some instances, to achieve this goal, we may have the impression that we need to “adjust” our rhythm to that of the other person. Then, with time, we may eventually have the feeling of “being with” the rhythm of the other.
Finally, it can be said that this approach contributed to developing a more person-centered practice, in which priority was given to respecting the wishes and autonomy of the patient; listening and offering a true presence; demanding, if need be, to adjust to or even being with the rhythm of the patient; and moving toward a concept of autonomy that now leaves a place for the other. In other words, the integration of this approach contributes favorably to the improvement of healthcare practice, and this is in line with the philosophy of palliative care. This also concurs with a movement initiated several years ago aimed at encouraging the development of more person-centered practices. If healthcare institutions and granting organizations are interested in promoting this philosophy, other studies will be needed to contribute to its outreach.
ACKNOWLEDGMENTS
The authors thank all the healthcare providers involved in this study for their commitment, administrative staff for their support, and patients' relatives for their time and trust. This research was funded through a grant from the Social Sciences and Humanities Research Council of Canada.
