Journal of Interprofessional Care
ISSN: 1356-1820 (Print) 1469-9567 (Online) Journal homepage: http://www.tandfonline.com/loi/ijic20
Improving health care professionals’ collaboration to facilitate patient participation in decisions regarding life-prolonging care: An action research project Julia Sohi, Manon Champagne & Sarah Shidler To cite this article: Julia Sohi, Manon Champagne & Sarah Shidler (2015) Improving health care professionals’ collaboration to facilitate patient participation in decisions regarding lifeprolonging care: An action research project, Journal of Interprofessional Care, 29:5, 409-414, DOI: 10.3109/13561820.2015.1027335 To link to this article: http://dx.doi.org/10.3109/13561820.2015.1027335
Published online: 19 Jun 2015.
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http://informahealthcare.com/jic ISSN: 1356-1820 (print), 1469-9567 (electronic) J Interprof Care, 2015; 29(5): 409–414 ! 2015 Taylor & Francis Group, LLC. DOI: 10.3109/13561820.2015.1027335
ORIGINAL ARTICLE
Improving health care professionals’ collaboration to facilitate patient participation in decisions regarding life-prolonging care: An action research project Julia Sohi1, Manon Champagne2, and Sarah Shidler2 Family Medicine Department, Universite´ de Sherbrooke, Sherbrooke, Quebec, Canada and 2Health Sciences Department, Universite´ du Que´bec en Abitibi-Te´miscamingue, Rouyn-Noranda, Quebec, Canada
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1
Abstract
Keywords
Much improvement is needed to facilitate patient involvement in medical decision-making related to life-prolonging care. Prior research focuses mainly on the communication in the physician-patient dyad; few studies have identified how other professionals are involved. Using a Research Action design, two rounds of interviews with four interprofessional groups from various clinical settings of a health center in Quebec, Canada were conducted between 2009 and 2010. The 37 participants represented nine professions (nurse, dietitian, occupational therapist, orderly, pastoral worker, physician, physiotherapist, respiratory therapist and social worker). The first round of interviews confirmed that all of these professionals are involved, in various ways, in communicating with patients regarding their goals of care. Based on these results, the research group developed two communications tools (paper forms) to facilitate the documentation of patient care goals. The first form includes a designated area where all professionals can note patients’ comments regarding decisions related to life-prolonging care. The second is a prescription form to document in the medical file the patient’s goals of care. Both tools were submitted to, and fine-tuned by, the professionals in the second round of interviews. These results confirm that interprofessional collaboration to facilitate patient participation in goals-of-care decisions is both possible and valued.
Action research, collaboration, communication, interprofessional collaboration, patient-centred practice, qualitative method, shared decisionmaking
Introduction Improving communication between patients and their health care professionals to allow shared decision-making regarding lifeprolonging treatments has been identified as a priority (Baillargeon & Montreuil, 2009). Numerous tools have been developed to assist patients and health care professionals in advance care planning, but their limits are numerous (Holley, 2003; Perkins, 2007). For example, such tools must be regarded as means of communication rather than ends (Bartlow, 2006) and this communication should include the clarification of patients’ goals rather than be limited to the explanation of medical interventions (Rodriguez & Young, 2006; Rosenfeld, Wenger, & Kagawa-Singer, 2000). Prior research indicating that patient participation in decision-making needs improvement has primarily focused on the physician-patient dyad. Many studies have also documented the involvement of nurses. Although there seems to be variations between different clinical settings (Bass, 2003), nurses often wish to be, or are in fact, involved in such decisions (Lopez, 2009; McMillen, 2008) and their involvement has been proven valuable (Frank, 2009). Although conceptual models of
History Received 6 April 2014 Revised 7 January 2015 Accepted 5 March 2015 Published online 17 June 2015
interprofessional shared decision-making (ISDM) are being developed, lack of shared working methods and of effective communication remain significant barriers to interprofessional collaboration (Legare et al., 2011, 2013). Interprofessional collaboration (IPC) is defined as the process through which different professional groups work together to positively impact healthcare (Zwarenstein, Goldman, & Reeves, 2009). IPC should involve clear roles (Duner, 2013; Suter et al., 2009) and could improve patient involvement (Howe, 2006). However, there are concerns that increased patient involvement and collaborative patient-centered care may not always answer patient needs (Fox & Reeves, 2014). Furthermore, no research has studied the strategies used by the various professionals to improve patient participation in identifying goals of care and making decisions related to lifeprolonging care, nor the roles of health care professionals other than nurses and physicians in these decisions (Norton & Bowers, 2001). Failure to recognize specific roles may explain the different degrees of engagement among health care professionals in interprofessional collaboration (Wittenberg-Lyles, Parker Oliver, Demiris, & Regehr, 2010).
Background Correspondence: Julia Sohi, Family Medicine Department, Universite´ de Sherbrooke, Pavillon Ge´rald-La Salle (Z7), Bureau 3043, 3001, 12e Avenue Nord, Sherbrooke, Quebec, J1H 5N4, Canada. E-mail: [email protected]
In 2008, the bioethics committee of the Health and Social Services Center of Rouyn-Noranda accepted to support this action research study, seeking an interprofessional approach to improve
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Table I. Participant characteristics in each focus group. Long-term care or rehabilitation
Home care or outpatient clinics
Nurses Occupational therapist Orderly Physiotherapist Physicians
1 1 1 2 1 1
Nurse Orderly Physician Physiotherapist Social worker Spiritual advisor
3 Nurses 1 Dietician 1 Physician
Nurses Occupational therapist Orderly Physicians Physiotherapist Social worker
2 1 1 1 1
Nurses Orderly Physiotherapist Social worker Spiritual advisor
4 1 2 1
Round
ICU or ER
Medical or surgical wards
1 (n ¼ 27)
3 1 3 1
Nurses Dietician Physicians Respiratory therapist
2 1 1 1 2
2 (n ¼ 29)
3 Nurses 3 Physicians 1 Respiratory therapist
2 1 1 2 1 1
patient participation in care decisions as a follow-up to their advance care planning awareness program (Shidler & BlaisGingras, 2007; Shidler & Le´ger, 2007). Our theoretical framework for describing the communication process in medical decision-making combined that presented by Feldman-Stewart and colleagues (Feldman-Stewart, Brundage, & Tishelman, 2005) and Shidler’s systemic model (Shidler, 1999). The former includes a wide range of internal and external factors influencing the iterative exchange of information between the patient and the physician, and the latter illustrates that this exchange of information occurs within the entire ‘‘PatientSystem’’ which includes the patient, his potential spokespersons, and many professionals other than the physician. In this framework, all means of communication between professionals were considered: verbal and non-verbal, formal and informal.
Methods To reach our goal of obtaining not only more information regarding the involvement of various professionals and their communication strategies, but also of fostering their collaboration in developing useful tools to facilitate the participation of patients1 in decisions related to life-prolonging care, this study used a qualitative, action research design, as defined by Stringer (2007). Our specific research questions were: How do professionals perceive their implication, their colleagues’ and the patients’ implication in the decisionmaking process? How do professionals inform the patient about the important issues involved in making care decision and how can this be improved? How do professionals discover and understand the patient’s point of view concerning care decisions and how can this be improved? How do professionals communicate with each other during the decision-making process and how can this be improved?
Study participants Participants recruited into the study were health care professionals of the Health and Social Services Center of Rouyn-Noranda, a small city in rural northern Quebec, Canada, as they are responsible for insuring patient participation in choice of care. In line with the goals of this study, purposive sampling was used to recruit participants identified by our research group as professionals recognized by their peers as having good group communication skills (ability to listen to others, to express own opinions) based on previous collaborations. Other selection
Nurses Dietician Physicians Social worker
criteria included a working experience of at least twelve months in one of the four clinical settings: (1) intensive care unit or the emergency room, (2) adult medical or surgical wards, (3) longterm care or rehabilitation, (4) home care or outpatient clinics of oncology, dialysis or HIV. Our goal was to include participants of as many different professions as possible. Members of our research group (which consisted of seven professionals familiar with this center, of which six were members of the Bioethics Committee) personally contacted potential participants to give them a letter summarizing the research project and asking them to contact the principal investigator if interested. For the second round of focus groups, we invited all previous participants. To replace unavailable participants, we recruited new participants of the same discipline using the same method as for the first round. Focus group discussions from both rounds were digitally audiorecorded with the informed consent of participants. Thirty-one participants were recruited for the first round of focus groups of which 27 actually attended. Thirty-two participants were recruited for the second round of focus groups of which 29 attended, including 19 former participants. A total of 37 different participants representing nine health care professions participated in this study. Participant characteristics for each focus group are detailed in Table I. Data collection The study gathered two rounds (June 2009, February 2010) of small focus groups (4–8 participants), one in each of four different clinical settings, led by the principal investigator. The first round of four focus groups (each lasting approximately two hours and including four to eight participants) used a semistructured approach, which allowed the participants to speak freely in relation to the four specific research questions noted above. An analysis of the transcribed content of the first round of focus groups was used to develop an intervention to improve communication between health care professionals and patients regarding life-prolonging care. This intervention consisted of two new written communication tools aimed at replacing the existing Levels of Care Intensity form used exclusively by physicians to document patients’ preferences regarding life-prolonging treatments. The objective of the second round of four focus groups was to submit the two new communication tools to the participants for feedback, thereby verifying and refining the results of the first round of focus groups. Using again a semi-structured approach, the participants were asked to comment on the pertinence, feasibility, efficiency and transferability of each of the new communication tools, which they had in hand for this discussion. This second round of four focus groups lasted approximately 90 minutes and included six to eight participants.
DOI: 10.3109/13561820.2015.1027335
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Data analysis
Strategies used to improve patient participation
To analyze the transcripts of the first round of focus groups, the principal investigator used thematic analysis (Paille´ & Mucchielli, 2003); first, by a vertical analysis of each focus group to identify important ‘‘themes’’ in the transcript, and second, by a transversal analysis to find commonalities or differences among groups for each theme. Special importance was given to capture consensus or disagreements among professionals (Hollander, 2004). To analyze the transcripts of the second round of focus groups, the principal investigator used analytic questioning (Paille´ & Mucchielli, 2003) to find the strengths and limits of the new communication tools.
Many of the communication strategies to involve patients in care decisions were similar among the different professionals. All health care professionals valued establishing a trust relationship with patients, and nurses particularly insisted that taking the time to listen to patients was a key ingredient. Explaining the necessity of discussing choices of care and leaving patients time to think about it were also common strategies. As illustrated by the following quotes, all professionals agreed patients should be asked to explain their quality of life perceptions and to detail their care and life goals as essential information to guide end-of-life care decisions:
Quality and ethics
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Interprofessional collaboration in goals-of-care decisions
Data triangulation was achieved by including in the focus groups representatives of different health care professions and clinical settings. We gained temporal triangulation by allowing eight months to pass between the two rounds of focus groups. Finally, all results were submitted to the principal investigator’s academic supervisor to enhance research rigor through external confirmation (Savoie-Zajc, 1996). The study was approved by the Research Ethics Board of both l’Universite´ du Que´bec en Abitibi-Te´miscamingue (UQAT) and the Central Board of the Ministry of Health and Social Services of Quebec.
Results Results from this study are presented in two main sections corresponding to the first and second round of this action research project, each involving a round of four focus groups. Focus group: first round In this round of focus groups, data were obtained regarding (a) the perceived key players and their involvement in the process of choosing care, (b) the strategies used by health care professionals with patients to improve patient participation and (c) the characteristics of the communication between professionals influencing patient participation. Perceived key players and involvement. The professionals interviewed perceived that patients and various health care professionals were all involved in the choice of care, but that patients should be the primary decision makers. Physicians attributed themselves, and were attributed by others, the statutory duty of announcing the diagnosis and prognosis, explaining treatment options and clarifying the patient’s decisions in the patient’s medical file with a medical prescription. In comparison to the role of the physician, some other professionals undervalued their own involvement in the decision-making process, as demonstrated in the quotes that follow. However, their roles were nevertheless multiple and consisted of listening to patients, informing them of their rights, encouraging them to express themselves, giving additional information on the functional impact of care and alerting physicians of patient distress. As illustrated in the following data extracts: I don’t feel concerned by communicating the diagnosis to patients. I am not trained to do that. (. . .) I can’t tell patients what are their treatment options. (. . .) We are not physicians. We don’t have much influence; we must only be a good listener or provoke certain reflections (Respiratory therapist 1.1)2 I don’t really have power regarding technical stuff, but (. . .) I can listen, make patients verbalize (Nurse 1.7)
You must ask the question, because you shouldn’t presume (. . .). ‘‘Do you think your life is worth living?’’ (Physician1.5) Sometimes I ask them ‘‘Did you accomplish your life? Are there things you wanted to do that you haven’t done?’’ (Nurse 1.6) Although all professionals relied on physicians to be the first to give patients information on their medical condition and treatment options, verifying patient comprehension involved other professionals, such as the nurse in the following quote: [I ask them:] ‘‘What did your doctor tell you today?’’, to see if the patient understood. (Nurse 1.7) Physicians and other professionals all criticized the existing advance directive form Levels of Care. Although the form had offered a good pretext to discuss end-of-life care, it was often completed as a formality and failed to include all possible clinical situations. Hence, it did not support a patient-centered communication process and sometimes limited access to care rather than orient use of life-prolonging treatments in conformance with patient preferences. Finally, physicians expressed the desire that other professionals be more involved and document patients’ preferences and other professionals agreed this would be advantageous, as noted in the discussion below concerning a new communication tool addressed to all professionals: [This new form would help in] bringing information (. . .) that would guide the professional that will talk about the level of intervention. (Dietitian 1.1) [This new form] would also guide the physician in his discussion . . . (Respiratory therapist 1.1) What is done orally would be written there [on the new form]. (Nurse 1.2) Of course, because [the new form] stimulates the patient to start thinking. (Physician 1.4) Nurses generally spend more time with patients then us, so they can have information we don’t. (. . .) If more people can initiate it [this discussion], I see this as an advantage. (Physician 1.2)
Communication between professionals influencing patient participation Professionals recognized that communication between them could enhance patient participation in choice of care. Communication between them helped to have a common understanding of the patient and a common care plan by sharing valuable information. In one focus group, concerns were however expressed by an orderly that closed communication between health care professionals could exclude the patient from the decision-making
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process if special attention wasn’t given to keep the patient included. But sometimes, the danger is that the professionals around are all interacting, but the (. . .) patient, well he is there (. . .) and he says nothing. (Orderly 1.1) Strategies to avoid this unwanted side-effect of interprofessional communication were later suggested, such as regularly validating with the patient the information written on the form.
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Inconsistencies will often come out (. . .). So we will plan a meeting with the patient to (. . .) talk a little bit about what he wants. (. . .) After that, we can all work in the same direction. (Other3 1.2) I try to keep the others informed of what I perceived or heard, so that there is someone that comes after me and checks. (Orderly 1.1) Hierarchy between professionals determined by education level and perceived power was identified as a factor limiting the transfer of information, especially between physicians and other health care professionals as expressed in the following quote: I go with my limits, and my limit now is that I don’t talk with the physician. It’s like I am afraid . . . It’s the words. (. . .) It takes a language to communicate with a physician, to communicate with the multidisciplinary team. We don’t have the language, how do you want us to communicate? (Other 1.1)
Focus group: second round Following the analysis of the first round of focus groups, two new communication tools were developed by the research group. The first tool, Patient’s Goals of Care form, was developed to replace the existing Levels of Care Intensity form. The objectives were to clarify the physician’s responsibility to discuss the patient’s goals of care (prolonging life, maintaining current quality of life or insuring comfort) before determining specific treatment options (cardiac reanimation attempt, invasive ventilation, artificial feeding, etc.) and offer a written space to document the outcomes of this discussion. The second communication tool, the Documenting Patient Wishes form, was designed to improve the transfer of information regarding the patient’s point of view between all health care professionals by offering a privileged space to note, and then find, all relevant information regarding the patient’s goals of care. To guide professionals, the participants suggested including different categories of possible ‘‘relevant’’ information on this latter form, such as knowledge of disease, quality of life perception, hopes, beliefs, goals and apprehensions. The perceived strengths and limits of the two proposed communication tools were discussed with the participants during the second round of focus groups. Strengths and limits of the ‘‘Documenting Patient Wishes’’ form The Documenting Patient Wishes form was appreciated by professionals as a means to improve the transfer of a variety of information and the continuity of care. Professionals appreciated that information confided to them by patients could more easily reach the attending physician and improve cohesion in the team: What I like is that we found a tool [Documenting Patient Wishes] where we will gather information from all the professionals. (. . .) Finally, something that unites. (Nurse 2.9)
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Professionals also confirmed non-medical information was important to consider and document to assist patients in their decisions regarding life-prolonging care as quoted below: [Documenting Patient Wishes] really explores the patient in his spirituality, his values, his life goals, . . . I find it is much more complete than what already exists, so it can help the professionals to better understand the person, and not (. . .) only consider the patient in a medical perspective. (Other 2.1) I find [Documenting Patient Wishes] is an interesting tool to gather some information that I can’t very well put elsewhere. (Physician 2.7) However, professionals were concerned that patients might feel betrayed by the transfer to other professionals of sensitive information. They agreed that patients should be informed that such information would be made available to the rest of the team to obtain at least a passive consent. Professionals were also concerned that some information would be used without first being validated and lead to erroneous decisions or to an interprofessional collaboration that excluded the patient. It was concluded that the attending physician should validate any information noted on the Documenting Patient Wishes form before using it, as noted below. I think nobody can go with that [information] and tell themselves ‘‘Well that’s it!’’, because maybe that day he [the patient] wasn’t feeling well, and the next morning, it’s a completely different story, so the physician must validate. (Nurse 2.1) Finally, the professionals other than physicians confirmed they wanted their involvement in the medical decision-making process to stay optional and descriptive rather than mandatory or statutory. Strengths and limits of the ‘‘Patient’s Goals of Care’’ form Professionals all acknowledged that goals of care were easier to understand than levels of care which failed to clarify the clinical outcome expected. Although physicians didn’t openly criticize the change from an intervention-oriented form to one goal-oriented, other professionals were the most enthusiastic about it. They welcomed a more simple vocabulary and an approach focused on patient concerns, as expressed in the following quotes: [Patient’s Goals of Care] is much clearer. It uses patient words. (Nurse 2.1) I think that when we talk about levels of care intensity to a patient, he has no clue about what we want to talk about. But if we talk about his life, (. . .) he understands more, and he can better make decisions. (Nurse 2.8) Many physicians were concerned that translating goals of care into specific medical interventions could be difficult, especially if the attending physician lacked clinical experience as noted by the physician quoted below. [On the old form, Levels of Care Intensity], we had benchmarks [on medical interventions]. (. . .) With the new form [Patient’s Goals of Care], you don’t have benchmarks, so it might be interpreted differently (. . .) If you are a physician with (. . .) experience, you can foresee that with such and such therapy you will have [such and such effect]. (Physician 2.6)
DOI: 10.3109/13561820.2015.1027335
Consequently, a distinct section to describe patients’ decisions regarding specific medical interventions relevant to their medical condition (ex: invasive ventilation in the case of a patient with pulmonary disease) was believed to be essential by all professionals. Some interventions are always difficult to delineate. What I like is that there are fewer specific interventions printed as choices on [Patient’s Goals of Care] but there is a section for writing in ‘‘specific interventions’’, well (. . .) it becomes a communication tool. (Physician 2.7) Finally, although the professionals generally welcomed both new tools, participants reiterated the importance of using any written form as a means for the communication process rather than an end.
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Discussing a form should be done regularly, because it is a means of communication. (Physician 1.3) Following the second round of focus groups, the research group modified the two new forms based on the feedback obtained by the participants. (Final versions of the forms may be obtained from the first author or at http://www.csssrn.qc.ca/ droitcomitebioethique.html.)
Discussion With this action research study, we sought not only to learn more about the involvement of various professionals and their communication strategies, but also to foster their collaboration in the development of useful communication tools that would facilitate the participation of patients in decisions related to their lifeprolonging care. Through interprofessional focus groups, a better understanding was obtained of how to increase their collaboration by (a) recognizing the involvement of different key players in the communications surrounding this decision-making process, (b) using certain strategies to facilitate patient participation, such as building trust, verifying patient comprehension, taking time to listen, and inquiring about patient goals of care, quality of life, life goals and (c) increasing communication between professionals regarding the establishment of common goals of care, the sharing and validation of pertinent patient information, and the inclusion of the patient. These focus groups also led to the development of two new communication tools: Documenting Patient Wishes, aimed at encouraging all health professionals to explore patients’ wishes and effectively documenting relevant information obtained, and Patient’s Goals of Care, inciting professionals to explore and document the patient’s goals of care before discussing related specific medical interventions. Common work tools to improve communication have been identified in previous research as ISDM facilitators (Legare et al., 2013). The tools developed are based on the various communication strategies mentioned by the professionals in our study and are consistent with the communication frameworks chosen. The tool Documenting Patient Wishes recognizes the impact of patients’ values, beliefs and emotions on the communication process as mentioned in Feldman-Stewart and colleagues’ model, while promoting a flow of communication between the various key players in each Patient-System as proposed by Shidler’s systemic model. This is also consistent with interprofessional communication models described in an article written subsequent to this research (Legare et al., 2011). The tool Patient’s Goals of Care satisfies both patients’ and professionals’ primary goals of communication as mentioned in Feldman-Stewart and colleagues’ model by presenting in lay terms goals of care and offering a
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designated area to document discussions on specific medical interventions. The results indicate that the professionals in our study perceived that they, along with the patients, were all significantly involved in the communication process around the choice of care for severe illnesses. Although a few prior studies had identified a great variety of health care professionals potentially involved (Lopez, 2009; McMillen, 2008; Norton & Bowers, 2001; Shidler, 1999), this research action study was original in consulting various health care professionals in the development of communication tools to actively include them in the improvement of patient participation in the decision-making process regarding life-prolonging care. Contrary to the research finding that nurses wishing to be involved in the decision-making process often do not receive encouragement to do so nor proper recognition when they do (Ryan et al., 2001), our research suggests that physicians, nurses, orderlies, dietitians, pastoral workers, social workers, physiotherapists, occupational therapists and respiratory therapists, identified by their peers as ‘‘communication experts’’, all valued increased recognition and encouragement of collaboration between health care professionals’ to facilitate patient participation in goals-of-care decisions, even though none wanted to usurp the statutory responsibility of the physician in final care decisions (as also found by Lopez, 2009; McMillen, 2008). Although, many authors have suggested the use of ‘‘goals of care’’ rather than ‘‘levels of care intensity’’ (Holley, 2003; Rodriguez & Young, 2006; Rosenfeld et al., 2000), this research highlights an interprofessional consensus in favor of such an approach. While patients were not included as participants in this study, the results were presented to a group of patient representatives and to a group of natural caregivers. Both groups appreciated the focus on goals of care rather than levels of medical intervention and agreed heartily with the recognition of various professionals’ contribution in the decision-making process. This is consistent with prior research demonstrating that interprofessional collaboration has a positive or neutral effect on patient satisfaction or clinical outcomes (Sidhom & Poulsen, 2006; Yan, Gilbert, & Hoffman, 2007; Zwarenstein, Goldman, & Reeves, 2009). These results must be considered in light of certain limitations. Our data were collected in a small community health center with a relatively culturally homogenous population. Our results may not be transferable to larger health care centers or in more culturally diverse communities. As purposive sampling of professional identified as communication experts by their peers was chosen to find solutions based on their perceptions, the applicability of the tools developed with professionals lacking expert communication skills is uncertain. Also, patients were not represented in this study, and this limits the validity of our results especially in regards to the acceptability to patients of the new tools, although many participants expressed values consistent with patientcentered care.
Concluding comments This action research study not only confirms that professionals from a variety of disciplines are involved in the discovery of patient wishes regarding goals-of-care decisions, but also illustrates their willingness to collaborate in effective interprofessional communication that facilitates patient participation in these important decisions. The results also suggest that focusing on the patient’s goals of care (rather than limiting discussion to specific medical interventions) increases the pertinence and value of the patient-centered conversations to which these professionals are privy. Further research is needed to evaluate the impact on patient experience and outcome.
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Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the writing and content of the article.
Notes 1. For reasons of brevity, patients hereafter refers to patients as well as their potential spokespersons. 2. The numbers are anonymous identification numbers. Numbers beginning with 1 are professionals from the first round of focus groups, while numbers beginning with 2 are professionals from the second round. 3. To protect the anonymity of our participants, other refers to an occupational therapist, a social worker or a spiritual advisor as these professionals are scarce in the health center where the study was conducted.
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References Baillargeon, L., & Montreuil, A. (2009). Les soins de fin de vie. . . parlons-en avant qu’il ne soit trop tard. Me´decin du Que´bec, 44, 39–44. Bartlow, B. (2006). In search of an advance directive that works for endstage renal disease patients. Hemodialysis International, 10, S38–S45. Bass, M. (2003). Oncology nurses’ perceptions of their role in resuscitation decisions. Journal of Professional Nursing, 18, 710–713. Duner, A. (2013). Care planning and decision-making in teams in Swedish elderly care: A study of interprofessional collaboration and professional boundaries. Journal of Professional Nursing, 27, 246–253. Feldman-Stewart, D., Brundage, M.D., & Tishelman, C. (2005). A conceptual framework for patient-professional communication: An application to the cancer context. Psychooncology, 14, 801–809; (discussion 810–801). Fox, A., & Reeves, S. (2015). Interprofessional collaborative patientcentred care: A critical exploration of two related discourses. Journal of Interprofessional Care, 29, 113–118. Frank, R.K. (2009). Shared decision making and its role in end of life care. British Journal of Nursing, 18, 612–618. Hollander, J.A. (2004). The social contexts of focus groups. Journal of Contemporary Ethnography, 33, 602–637. Holley, J.L. (2003). Advance care planning in elderly chronic dialysis patients. International Urology and Nephrology, 35, 565–568. Howe, A. (2006). Can the patient be on our team? An operational approach to patient involvement in interprofessional approaches to safe care. Journal of Interprofessional Care, 20, 527–534. Legare, F., Stacey, D., Briere, N., Fraser, K., Desroches, S., Dumont, S., . . . Aube, D. (2013). Healthcare providers’ intentions to engage in an interprofessional approach to shared decision-making in home care programs: A mixed methods study. Journal of Interprofessional Care, 27, 214–222. Legare, F., Stacey, D., Gagnon, S., Dunn, S., Pluye, P., Frosch, D., . . . Graham, I.D. (2011). Validating a conceptual model for an inter-professional approach to shared decision making: A mixed methods study. Journal of Evaluation in Clinical Practice, 17, 554–564.
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Lopez, R.P. (2009). Decision-making for acutely ill nursing home residents: Nurses in the middle. Journal of Advanced Nursing, 65, 1001–1009. McMillen, R.E. (2008). End of life decisions: Nurses perceptions, feelings and experiences. Intensive Critical Care Nursing, 24, 251–259. Norton, S.A., & Bowers, B.J. (2001). Working toward consensus: Providers’ strategies to shift patients from curative to palliative treatment choices. Research in Nursing & Health, 24, 258–269. Paille´, P., & Mucchielli, A. (2003). L’analyse qualitative en sciences humaines et sociales. Paris: Armand Colin. Perkins, H.S. (2007). Controlling death: The false promise of advance directives. Annals of Internal Medicine, 147, 51–57. Rodriguez, K.L., & Young, A.J. (2006). Patients’ and healthcare providers’ understandings of life-sustaining treatment: Are perceptions of goals shared or divergent? Social Science & Medicine, 62, 125–133. Rosenfeld, K.E., Wenger, N.S., & Kagawa-Singer, M. (2000). End-of-life decision making: A qualitative study of elderly individuals. Journal of General Internal Medicine, 15, 620–625. Ryan, C.J., Santucci, M.A., Gattuso, M.C., Czurylo, K., O’Brien, J., & Stark, B. (2001). Perceptions about advance directives by nurses in a community hospital. Clinical Nurse Specialist, 15, 246–252. Savoie-Zajc, L. (1996). Triangulation (technique de validation par). In A. Mucchielli (Ed.), Dictionnaire des me´thodes qualitatives en sciences humaines et sociales (pp. 261–262). Paris: Armand Colin. Shidler, S. (1999). Effective communication of the long-term care resident’s end-of-life treatment wishes: A systemic perspective. In B. de Vries (Ed.), End of Life Issues: Interdisciplinary and Multidisciplinary Perspectives (pp. 185–204). New York: Springer. Shidler, S., & Blais-Gingras, M. (2007). Traitements prolongeant la vie: J’y pense, j’en parle. Canada: Fondation hospitalie`re du CSSSRN. Shidler, S., & Le´ger, A. (2007). Faciliter la communication en temps opportun des volonte´s relatives a` l’intensite´ des soins; un projet prioritaire du comite´ de bioe´thique. Frontie`res (automne), 20, 81–85. Sidhom, M.A., & Poulsen, M.G. (2006). Multidisciplinary care in oncology: Medicolegal implications of group decisions. Lancet Oncology, 7, 951–954. Stringer, E. T. (2007). Action research (3rd ed.). Los Angeles; London: SAGE. Suter, E., Arndt, J., Arthur, N., Parboosingh, J., Taylor, E., & Deutschlander, S. (2009). Role understanding and effective communication as core competencies for collaborative practice. Journal of Interprofessional Care, 23, 41–51. Wittenberg-Lyles, E., Parker Oliver, D., Demiris, G., & Regehr, K. (2010). Interdisciplinary collaboration in hospice team meetings. Journal of Interprofessional Care, 24, 264–273. Yan, J., Gilbert, J. H., & Hoffman, S. J. (2007). World Health Organization Study Group on Interprofessional Education and Collaborative Practice. Journal of Interprofessional Care, 21, 588–589. Zwarenstein, M., Goldman, J., & Reeves, S. (2009). Interprofessional collaboration: Effects of practice-based interventions on professional practice and healthcare outcomes. Cochrane Database of Systematic Reviews, 3, CD000072.
ISSN: 1356-1820 (Print) 1469-9567 (Online) Journal homepage: http://www.tandfonline.com/loi/ijic20
Improving health care professionals’ collaboration to facilitate patient participation in decisions regarding life-prolonging care: An action research project Julia Sohi, Manon Champagne & Sarah Shidler To cite this article: Julia Sohi, Manon Champagne & Sarah Shidler (2015) Improving health care professionals’ collaboration to facilitate patient participation in decisions regarding lifeprolonging care: An action research project, Journal of Interprofessional Care, 29:5, 409-414, DOI: 10.3109/13561820.2015.1027335 To link to this article: http://dx.doi.org/10.3109/13561820.2015.1027335
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http://informahealthcare.com/jic ISSN: 1356-1820 (print), 1469-9567 (electronic) J Interprof Care, 2015; 29(5): 409–414 ! 2015 Taylor & Francis Group, LLC. DOI: 10.3109/13561820.2015.1027335
ORIGINAL ARTICLE
Improving health care professionals’ collaboration to facilitate patient participation in decisions regarding life-prolonging care: An action research project Julia Sohi1, Manon Champagne2, and Sarah Shidler2 Family Medicine Department, Universite´ de Sherbrooke, Sherbrooke, Quebec, Canada and 2Health Sciences Department, Universite´ du Que´bec en Abitibi-Te´miscamingue, Rouyn-Noranda, Quebec, Canada
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1
Abstract
Keywords
Much improvement is needed to facilitate patient involvement in medical decision-making related to life-prolonging care. Prior research focuses mainly on the communication in the physician-patient dyad; few studies have identified how other professionals are involved. Using a Research Action design, two rounds of interviews with four interprofessional groups from various clinical settings of a health center in Quebec, Canada were conducted between 2009 and 2010. The 37 participants represented nine professions (nurse, dietitian, occupational therapist, orderly, pastoral worker, physician, physiotherapist, respiratory therapist and social worker). The first round of interviews confirmed that all of these professionals are involved, in various ways, in communicating with patients regarding their goals of care. Based on these results, the research group developed two communications tools (paper forms) to facilitate the documentation of patient care goals. The first form includes a designated area where all professionals can note patients’ comments regarding decisions related to life-prolonging care. The second is a prescription form to document in the medical file the patient’s goals of care. Both tools were submitted to, and fine-tuned by, the professionals in the second round of interviews. These results confirm that interprofessional collaboration to facilitate patient participation in goals-of-care decisions is both possible and valued.
Action research, collaboration, communication, interprofessional collaboration, patient-centred practice, qualitative method, shared decisionmaking
Introduction Improving communication between patients and their health care professionals to allow shared decision-making regarding lifeprolonging treatments has been identified as a priority (Baillargeon & Montreuil, 2009). Numerous tools have been developed to assist patients and health care professionals in advance care planning, but their limits are numerous (Holley, 2003; Perkins, 2007). For example, such tools must be regarded as means of communication rather than ends (Bartlow, 2006) and this communication should include the clarification of patients’ goals rather than be limited to the explanation of medical interventions (Rodriguez & Young, 2006; Rosenfeld, Wenger, & Kagawa-Singer, 2000). Prior research indicating that patient participation in decision-making needs improvement has primarily focused on the physician-patient dyad. Many studies have also documented the involvement of nurses. Although there seems to be variations between different clinical settings (Bass, 2003), nurses often wish to be, or are in fact, involved in such decisions (Lopez, 2009; McMillen, 2008) and their involvement has been proven valuable (Frank, 2009). Although conceptual models of
History Received 6 April 2014 Revised 7 January 2015 Accepted 5 March 2015 Published online 17 June 2015
interprofessional shared decision-making (ISDM) are being developed, lack of shared working methods and of effective communication remain significant barriers to interprofessional collaboration (Legare et al., 2011, 2013). Interprofessional collaboration (IPC) is defined as the process through which different professional groups work together to positively impact healthcare (Zwarenstein, Goldman, & Reeves, 2009). IPC should involve clear roles (Duner, 2013; Suter et al., 2009) and could improve patient involvement (Howe, 2006). However, there are concerns that increased patient involvement and collaborative patient-centered care may not always answer patient needs (Fox & Reeves, 2014). Furthermore, no research has studied the strategies used by the various professionals to improve patient participation in identifying goals of care and making decisions related to lifeprolonging care, nor the roles of health care professionals other than nurses and physicians in these decisions (Norton & Bowers, 2001). Failure to recognize specific roles may explain the different degrees of engagement among health care professionals in interprofessional collaboration (Wittenberg-Lyles, Parker Oliver, Demiris, & Regehr, 2010).
Background Correspondence: Julia Sohi, Family Medicine Department, Universite´ de Sherbrooke, Pavillon Ge´rald-La Salle (Z7), Bureau 3043, 3001, 12e Avenue Nord, Sherbrooke, Quebec, J1H 5N4, Canada. E-mail: [email protected]
In 2008, the bioethics committee of the Health and Social Services Center of Rouyn-Noranda accepted to support this action research study, seeking an interprofessional approach to improve
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Table I. Participant characteristics in each focus group. Long-term care or rehabilitation
Home care or outpatient clinics
Nurses Occupational therapist Orderly Physiotherapist Physicians
1 1 1 2 1 1
Nurse Orderly Physician Physiotherapist Social worker Spiritual advisor
3 Nurses 1 Dietician 1 Physician
Nurses Occupational therapist Orderly Physicians Physiotherapist Social worker
2 1 1 1 1
Nurses Orderly Physiotherapist Social worker Spiritual advisor
4 1 2 1
Round
ICU or ER
Medical or surgical wards
1 (n ¼ 27)
3 1 3 1
Nurses Dietician Physicians Respiratory therapist
2 1 1 1 2
2 (n ¼ 29)
3 Nurses 3 Physicians 1 Respiratory therapist
2 1 1 2 1 1
patient participation in care decisions as a follow-up to their advance care planning awareness program (Shidler & BlaisGingras, 2007; Shidler & Le´ger, 2007). Our theoretical framework for describing the communication process in medical decision-making combined that presented by Feldman-Stewart and colleagues (Feldman-Stewart, Brundage, & Tishelman, 2005) and Shidler’s systemic model (Shidler, 1999). The former includes a wide range of internal and external factors influencing the iterative exchange of information between the patient and the physician, and the latter illustrates that this exchange of information occurs within the entire ‘‘PatientSystem’’ which includes the patient, his potential spokespersons, and many professionals other than the physician. In this framework, all means of communication between professionals were considered: verbal and non-verbal, formal and informal.
Methods To reach our goal of obtaining not only more information regarding the involvement of various professionals and their communication strategies, but also of fostering their collaboration in developing useful tools to facilitate the participation of patients1 in decisions related to life-prolonging care, this study used a qualitative, action research design, as defined by Stringer (2007). Our specific research questions were: How do professionals perceive their implication, their colleagues’ and the patients’ implication in the decisionmaking process? How do professionals inform the patient about the important issues involved in making care decision and how can this be improved? How do professionals discover and understand the patient’s point of view concerning care decisions and how can this be improved? How do professionals communicate with each other during the decision-making process and how can this be improved?
Study participants Participants recruited into the study were health care professionals of the Health and Social Services Center of Rouyn-Noranda, a small city in rural northern Quebec, Canada, as they are responsible for insuring patient participation in choice of care. In line with the goals of this study, purposive sampling was used to recruit participants identified by our research group as professionals recognized by their peers as having good group communication skills (ability to listen to others, to express own opinions) based on previous collaborations. Other selection
Nurses Dietician Physicians Social worker
criteria included a working experience of at least twelve months in one of the four clinical settings: (1) intensive care unit or the emergency room, (2) adult medical or surgical wards, (3) longterm care or rehabilitation, (4) home care or outpatient clinics of oncology, dialysis or HIV. Our goal was to include participants of as many different professions as possible. Members of our research group (which consisted of seven professionals familiar with this center, of which six were members of the Bioethics Committee) personally contacted potential participants to give them a letter summarizing the research project and asking them to contact the principal investigator if interested. For the second round of focus groups, we invited all previous participants. To replace unavailable participants, we recruited new participants of the same discipline using the same method as for the first round. Focus group discussions from both rounds were digitally audiorecorded with the informed consent of participants. Thirty-one participants were recruited for the first round of focus groups of which 27 actually attended. Thirty-two participants were recruited for the second round of focus groups of which 29 attended, including 19 former participants. A total of 37 different participants representing nine health care professions participated in this study. Participant characteristics for each focus group are detailed in Table I. Data collection The study gathered two rounds (June 2009, February 2010) of small focus groups (4–8 participants), one in each of four different clinical settings, led by the principal investigator. The first round of four focus groups (each lasting approximately two hours and including four to eight participants) used a semistructured approach, which allowed the participants to speak freely in relation to the four specific research questions noted above. An analysis of the transcribed content of the first round of focus groups was used to develop an intervention to improve communication between health care professionals and patients regarding life-prolonging care. This intervention consisted of two new written communication tools aimed at replacing the existing Levels of Care Intensity form used exclusively by physicians to document patients’ preferences regarding life-prolonging treatments. The objective of the second round of four focus groups was to submit the two new communication tools to the participants for feedback, thereby verifying and refining the results of the first round of focus groups. Using again a semi-structured approach, the participants were asked to comment on the pertinence, feasibility, efficiency and transferability of each of the new communication tools, which they had in hand for this discussion. This second round of four focus groups lasted approximately 90 minutes and included six to eight participants.
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Data analysis
Strategies used to improve patient participation
To analyze the transcripts of the first round of focus groups, the principal investigator used thematic analysis (Paille´ & Mucchielli, 2003); first, by a vertical analysis of each focus group to identify important ‘‘themes’’ in the transcript, and second, by a transversal analysis to find commonalities or differences among groups for each theme. Special importance was given to capture consensus or disagreements among professionals (Hollander, 2004). To analyze the transcripts of the second round of focus groups, the principal investigator used analytic questioning (Paille´ & Mucchielli, 2003) to find the strengths and limits of the new communication tools.
Many of the communication strategies to involve patients in care decisions were similar among the different professionals. All health care professionals valued establishing a trust relationship with patients, and nurses particularly insisted that taking the time to listen to patients was a key ingredient. Explaining the necessity of discussing choices of care and leaving patients time to think about it were also common strategies. As illustrated by the following quotes, all professionals agreed patients should be asked to explain their quality of life perceptions and to detail their care and life goals as essential information to guide end-of-life care decisions:
Quality and ethics
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Interprofessional collaboration in goals-of-care decisions
Data triangulation was achieved by including in the focus groups representatives of different health care professions and clinical settings. We gained temporal triangulation by allowing eight months to pass between the two rounds of focus groups. Finally, all results were submitted to the principal investigator’s academic supervisor to enhance research rigor through external confirmation (Savoie-Zajc, 1996). The study was approved by the Research Ethics Board of both l’Universite´ du Que´bec en Abitibi-Te´miscamingue (UQAT) and the Central Board of the Ministry of Health and Social Services of Quebec.
Results Results from this study are presented in two main sections corresponding to the first and second round of this action research project, each involving a round of four focus groups. Focus group: first round In this round of focus groups, data were obtained regarding (a) the perceived key players and their involvement in the process of choosing care, (b) the strategies used by health care professionals with patients to improve patient participation and (c) the characteristics of the communication between professionals influencing patient participation. Perceived key players and involvement. The professionals interviewed perceived that patients and various health care professionals were all involved in the choice of care, but that patients should be the primary decision makers. Physicians attributed themselves, and were attributed by others, the statutory duty of announcing the diagnosis and prognosis, explaining treatment options and clarifying the patient’s decisions in the patient’s medical file with a medical prescription. In comparison to the role of the physician, some other professionals undervalued their own involvement in the decision-making process, as demonstrated in the quotes that follow. However, their roles were nevertheless multiple and consisted of listening to patients, informing them of their rights, encouraging them to express themselves, giving additional information on the functional impact of care and alerting physicians of patient distress. As illustrated in the following data extracts: I don’t feel concerned by communicating the diagnosis to patients. I am not trained to do that. (. . .) I can’t tell patients what are their treatment options. (. . .) We are not physicians. We don’t have much influence; we must only be a good listener or provoke certain reflections (Respiratory therapist 1.1)2 I don’t really have power regarding technical stuff, but (. . .) I can listen, make patients verbalize (Nurse 1.7)
You must ask the question, because you shouldn’t presume (. . .). ‘‘Do you think your life is worth living?’’ (Physician1.5) Sometimes I ask them ‘‘Did you accomplish your life? Are there things you wanted to do that you haven’t done?’’ (Nurse 1.6) Although all professionals relied on physicians to be the first to give patients information on their medical condition and treatment options, verifying patient comprehension involved other professionals, such as the nurse in the following quote: [I ask them:] ‘‘What did your doctor tell you today?’’, to see if the patient understood. (Nurse 1.7) Physicians and other professionals all criticized the existing advance directive form Levels of Care. Although the form had offered a good pretext to discuss end-of-life care, it was often completed as a formality and failed to include all possible clinical situations. Hence, it did not support a patient-centered communication process and sometimes limited access to care rather than orient use of life-prolonging treatments in conformance with patient preferences. Finally, physicians expressed the desire that other professionals be more involved and document patients’ preferences and other professionals agreed this would be advantageous, as noted in the discussion below concerning a new communication tool addressed to all professionals: [This new form would help in] bringing information (. . .) that would guide the professional that will talk about the level of intervention. (Dietitian 1.1) [This new form] would also guide the physician in his discussion . . . (Respiratory therapist 1.1) What is done orally would be written there [on the new form]. (Nurse 1.2) Of course, because [the new form] stimulates the patient to start thinking. (Physician 1.4) Nurses generally spend more time with patients then us, so they can have information we don’t. (. . .) If more people can initiate it [this discussion], I see this as an advantage. (Physician 1.2)
Communication between professionals influencing patient participation Professionals recognized that communication between them could enhance patient participation in choice of care. Communication between them helped to have a common understanding of the patient and a common care plan by sharing valuable information. In one focus group, concerns were however expressed by an orderly that closed communication between health care professionals could exclude the patient from the decision-making
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process if special attention wasn’t given to keep the patient included. But sometimes, the danger is that the professionals around are all interacting, but the (. . .) patient, well he is there (. . .) and he says nothing. (Orderly 1.1) Strategies to avoid this unwanted side-effect of interprofessional communication were later suggested, such as regularly validating with the patient the information written on the form.
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Inconsistencies will often come out (. . .). So we will plan a meeting with the patient to (. . .) talk a little bit about what he wants. (. . .) After that, we can all work in the same direction. (Other3 1.2) I try to keep the others informed of what I perceived or heard, so that there is someone that comes after me and checks. (Orderly 1.1) Hierarchy between professionals determined by education level and perceived power was identified as a factor limiting the transfer of information, especially between physicians and other health care professionals as expressed in the following quote: I go with my limits, and my limit now is that I don’t talk with the physician. It’s like I am afraid . . . It’s the words. (. . .) It takes a language to communicate with a physician, to communicate with the multidisciplinary team. We don’t have the language, how do you want us to communicate? (Other 1.1)
Focus group: second round Following the analysis of the first round of focus groups, two new communication tools were developed by the research group. The first tool, Patient’s Goals of Care form, was developed to replace the existing Levels of Care Intensity form. The objectives were to clarify the physician’s responsibility to discuss the patient’s goals of care (prolonging life, maintaining current quality of life or insuring comfort) before determining specific treatment options (cardiac reanimation attempt, invasive ventilation, artificial feeding, etc.) and offer a written space to document the outcomes of this discussion. The second communication tool, the Documenting Patient Wishes form, was designed to improve the transfer of information regarding the patient’s point of view between all health care professionals by offering a privileged space to note, and then find, all relevant information regarding the patient’s goals of care. To guide professionals, the participants suggested including different categories of possible ‘‘relevant’’ information on this latter form, such as knowledge of disease, quality of life perception, hopes, beliefs, goals and apprehensions. The perceived strengths and limits of the two proposed communication tools were discussed with the participants during the second round of focus groups. Strengths and limits of the ‘‘Documenting Patient Wishes’’ form The Documenting Patient Wishes form was appreciated by professionals as a means to improve the transfer of a variety of information and the continuity of care. Professionals appreciated that information confided to them by patients could more easily reach the attending physician and improve cohesion in the team: What I like is that we found a tool [Documenting Patient Wishes] where we will gather information from all the professionals. (. . .) Finally, something that unites. (Nurse 2.9)
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Professionals also confirmed non-medical information was important to consider and document to assist patients in their decisions regarding life-prolonging care as quoted below: [Documenting Patient Wishes] really explores the patient in his spirituality, his values, his life goals, . . . I find it is much more complete than what already exists, so it can help the professionals to better understand the person, and not (. . .) only consider the patient in a medical perspective. (Other 2.1) I find [Documenting Patient Wishes] is an interesting tool to gather some information that I can’t very well put elsewhere. (Physician 2.7) However, professionals were concerned that patients might feel betrayed by the transfer to other professionals of sensitive information. They agreed that patients should be informed that such information would be made available to the rest of the team to obtain at least a passive consent. Professionals were also concerned that some information would be used without first being validated and lead to erroneous decisions or to an interprofessional collaboration that excluded the patient. It was concluded that the attending physician should validate any information noted on the Documenting Patient Wishes form before using it, as noted below. I think nobody can go with that [information] and tell themselves ‘‘Well that’s it!’’, because maybe that day he [the patient] wasn’t feeling well, and the next morning, it’s a completely different story, so the physician must validate. (Nurse 2.1) Finally, the professionals other than physicians confirmed they wanted their involvement in the medical decision-making process to stay optional and descriptive rather than mandatory or statutory. Strengths and limits of the ‘‘Patient’s Goals of Care’’ form Professionals all acknowledged that goals of care were easier to understand than levels of care which failed to clarify the clinical outcome expected. Although physicians didn’t openly criticize the change from an intervention-oriented form to one goal-oriented, other professionals were the most enthusiastic about it. They welcomed a more simple vocabulary and an approach focused on patient concerns, as expressed in the following quotes: [Patient’s Goals of Care] is much clearer. It uses patient words. (Nurse 2.1) I think that when we talk about levels of care intensity to a patient, he has no clue about what we want to talk about. But if we talk about his life, (. . .) he understands more, and he can better make decisions. (Nurse 2.8) Many physicians were concerned that translating goals of care into specific medical interventions could be difficult, especially if the attending physician lacked clinical experience as noted by the physician quoted below. [On the old form, Levels of Care Intensity], we had benchmarks [on medical interventions]. (. . .) With the new form [Patient’s Goals of Care], you don’t have benchmarks, so it might be interpreted differently (. . .) If you are a physician with (. . .) experience, you can foresee that with such and such therapy you will have [such and such effect]. (Physician 2.6)
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Consequently, a distinct section to describe patients’ decisions regarding specific medical interventions relevant to their medical condition (ex: invasive ventilation in the case of a patient with pulmonary disease) was believed to be essential by all professionals. Some interventions are always difficult to delineate. What I like is that there are fewer specific interventions printed as choices on [Patient’s Goals of Care] but there is a section for writing in ‘‘specific interventions’’, well (. . .) it becomes a communication tool. (Physician 2.7) Finally, although the professionals generally welcomed both new tools, participants reiterated the importance of using any written form as a means for the communication process rather than an end.
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Discussing a form should be done regularly, because it is a means of communication. (Physician 1.3) Following the second round of focus groups, the research group modified the two new forms based on the feedback obtained by the participants. (Final versions of the forms may be obtained from the first author or at http://www.csssrn.qc.ca/ droitcomitebioethique.html.)
Discussion With this action research study, we sought not only to learn more about the involvement of various professionals and their communication strategies, but also to foster their collaboration in the development of useful communication tools that would facilitate the participation of patients in decisions related to their lifeprolonging care. Through interprofessional focus groups, a better understanding was obtained of how to increase their collaboration by (a) recognizing the involvement of different key players in the communications surrounding this decision-making process, (b) using certain strategies to facilitate patient participation, such as building trust, verifying patient comprehension, taking time to listen, and inquiring about patient goals of care, quality of life, life goals and (c) increasing communication between professionals regarding the establishment of common goals of care, the sharing and validation of pertinent patient information, and the inclusion of the patient. These focus groups also led to the development of two new communication tools: Documenting Patient Wishes, aimed at encouraging all health professionals to explore patients’ wishes and effectively documenting relevant information obtained, and Patient’s Goals of Care, inciting professionals to explore and document the patient’s goals of care before discussing related specific medical interventions. Common work tools to improve communication have been identified in previous research as ISDM facilitators (Legare et al., 2013). The tools developed are based on the various communication strategies mentioned by the professionals in our study and are consistent with the communication frameworks chosen. The tool Documenting Patient Wishes recognizes the impact of patients’ values, beliefs and emotions on the communication process as mentioned in Feldman-Stewart and colleagues’ model, while promoting a flow of communication between the various key players in each Patient-System as proposed by Shidler’s systemic model. This is also consistent with interprofessional communication models described in an article written subsequent to this research (Legare et al., 2011). The tool Patient’s Goals of Care satisfies both patients’ and professionals’ primary goals of communication as mentioned in Feldman-Stewart and colleagues’ model by presenting in lay terms goals of care and offering a
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designated area to document discussions on specific medical interventions. The results indicate that the professionals in our study perceived that they, along with the patients, were all significantly involved in the communication process around the choice of care for severe illnesses. Although a few prior studies had identified a great variety of health care professionals potentially involved (Lopez, 2009; McMillen, 2008; Norton & Bowers, 2001; Shidler, 1999), this research action study was original in consulting various health care professionals in the development of communication tools to actively include them in the improvement of patient participation in the decision-making process regarding life-prolonging care. Contrary to the research finding that nurses wishing to be involved in the decision-making process often do not receive encouragement to do so nor proper recognition when they do (Ryan et al., 2001), our research suggests that physicians, nurses, orderlies, dietitians, pastoral workers, social workers, physiotherapists, occupational therapists and respiratory therapists, identified by their peers as ‘‘communication experts’’, all valued increased recognition and encouragement of collaboration between health care professionals’ to facilitate patient participation in goals-of-care decisions, even though none wanted to usurp the statutory responsibility of the physician in final care decisions (as also found by Lopez, 2009; McMillen, 2008). Although, many authors have suggested the use of ‘‘goals of care’’ rather than ‘‘levels of care intensity’’ (Holley, 2003; Rodriguez & Young, 2006; Rosenfeld et al., 2000), this research highlights an interprofessional consensus in favor of such an approach. While patients were not included as participants in this study, the results were presented to a group of patient representatives and to a group of natural caregivers. Both groups appreciated the focus on goals of care rather than levels of medical intervention and agreed heartily with the recognition of various professionals’ contribution in the decision-making process. This is consistent with prior research demonstrating that interprofessional collaboration has a positive or neutral effect on patient satisfaction or clinical outcomes (Sidhom & Poulsen, 2006; Yan, Gilbert, & Hoffman, 2007; Zwarenstein, Goldman, & Reeves, 2009). These results must be considered in light of certain limitations. Our data were collected in a small community health center with a relatively culturally homogenous population. Our results may not be transferable to larger health care centers or in more culturally diverse communities. As purposive sampling of professional identified as communication experts by their peers was chosen to find solutions based on their perceptions, the applicability of the tools developed with professionals lacking expert communication skills is uncertain. Also, patients were not represented in this study, and this limits the validity of our results especially in regards to the acceptability to patients of the new tools, although many participants expressed values consistent with patientcentered care.
Concluding comments This action research study not only confirms that professionals from a variety of disciplines are involved in the discovery of patient wishes regarding goals-of-care decisions, but also illustrates their willingness to collaborate in effective interprofessional communication that facilitates patient participation in these important decisions. The results also suggest that focusing on the patient’s goals of care (rather than limiting discussion to specific medical interventions) increases the pertinence and value of the patient-centered conversations to which these professionals are privy. Further research is needed to evaluate the impact on patient experience and outcome.
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Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the writing and content of the article.
Notes 1. For reasons of brevity, patients hereafter refers to patients as well as their potential spokespersons. 2. The numbers are anonymous identification numbers. Numbers beginning with 1 are professionals from the first round of focus groups, while numbers beginning with 2 are professionals from the second round. 3. To protect the anonymity of our participants, other refers to an occupational therapist, a social worker or a spiritual advisor as these professionals are scarce in the health center where the study was conducted.
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References Baillargeon, L., & Montreuil, A. (2009). Les soins de fin de vie. . . parlons-en avant qu’il ne soit trop tard. Me´decin du Que´bec, 44, 39–44. Bartlow, B. (2006). In search of an advance directive that works for endstage renal disease patients. Hemodialysis International, 10, S38–S45. Bass, M. (2003). Oncology nurses’ perceptions of their role in resuscitation decisions. Journal of Professional Nursing, 18, 710–713. Duner, A. (2013). Care planning and decision-making in teams in Swedish elderly care: A study of interprofessional collaboration and professional boundaries. Journal of Professional Nursing, 27, 246–253. Feldman-Stewart, D., Brundage, M.D., & Tishelman, C. (2005). A conceptual framework for patient-professional communication: An application to the cancer context. Psychooncology, 14, 801–809; (discussion 810–801). Fox, A., & Reeves, S. (2015). Interprofessional collaborative patientcentred care: A critical exploration of two related discourses. Journal of Interprofessional Care, 29, 113–118. Frank, R.K. (2009). Shared decision making and its role in end of life care. British Journal of Nursing, 18, 612–618. Hollander, J.A. (2004). The social contexts of focus groups. Journal of Contemporary Ethnography, 33, 602–637. Holley, J.L. (2003). Advance care planning in elderly chronic dialysis patients. International Urology and Nephrology, 35, 565–568. Howe, A. (2006). Can the patient be on our team? An operational approach to patient involvement in interprofessional approaches to safe care. Journal of Interprofessional Care, 20, 527–534. Legare, F., Stacey, D., Briere, N., Fraser, K., Desroches, S., Dumont, S., . . . Aube, D. (2013). Healthcare providers’ intentions to engage in an interprofessional approach to shared decision-making in home care programs: A mixed methods study. Journal of Interprofessional Care, 27, 214–222. Legare, F., Stacey, D., Gagnon, S., Dunn, S., Pluye, P., Frosch, D., . . . Graham, I.D. (2011). Validating a conceptual model for an inter-professional approach to shared decision making: A mixed methods study. Journal of Evaluation in Clinical Practice, 17, 554–564.
J Interprof Care, 2015; 29(5): 409–414
Lopez, R.P. (2009). Decision-making for acutely ill nursing home residents: Nurses in the middle. Journal of Advanced Nursing, 65, 1001–1009. McMillen, R.E. (2008). End of life decisions: Nurses perceptions, feelings and experiences. Intensive Critical Care Nursing, 24, 251–259. Norton, S.A., & Bowers, B.J. (2001). Working toward consensus: Providers’ strategies to shift patients from curative to palliative treatment choices. Research in Nursing & Health, 24, 258–269. Paille´, P., & Mucchielli, A. (2003). L’analyse qualitative en sciences humaines et sociales. Paris: Armand Colin. Perkins, H.S. (2007). Controlling death: The false promise of advance directives. Annals of Internal Medicine, 147, 51–57. Rodriguez, K.L., & Young, A.J. (2006). Patients’ and healthcare providers’ understandings of life-sustaining treatment: Are perceptions of goals shared or divergent? Social Science & Medicine, 62, 125–133. Rosenfeld, K.E., Wenger, N.S., & Kagawa-Singer, M. (2000). End-of-life decision making: A qualitative study of elderly individuals. Journal of General Internal Medicine, 15, 620–625. Ryan, C.J., Santucci, M.A., Gattuso, M.C., Czurylo, K., O’Brien, J., & Stark, B. (2001). Perceptions about advance directives by nurses in a community hospital. Clinical Nurse Specialist, 15, 246–252. Savoie-Zajc, L. (1996). Triangulation (technique de validation par). In A. Mucchielli (Ed.), Dictionnaire des me´thodes qualitatives en sciences humaines et sociales (pp. 261–262). Paris: Armand Colin. Shidler, S. (1999). Effective communication of the long-term care resident’s end-of-life treatment wishes: A systemic perspective. In B. de Vries (Ed.), End of Life Issues: Interdisciplinary and Multidisciplinary Perspectives (pp. 185–204). New York: Springer. Shidler, S., & Blais-Gingras, M. (2007). Traitements prolongeant la vie: J’y pense, j’en parle. Canada: Fondation hospitalie`re du CSSSRN. Shidler, S., & Le´ger, A. (2007). Faciliter la communication en temps opportun des volonte´s relatives a` l’intensite´ des soins; un projet prioritaire du comite´ de bioe´thique. Frontie`res (automne), 20, 81–85. Sidhom, M.A., & Poulsen, M.G. (2006). Multidisciplinary care in oncology: Medicolegal implications of group decisions. Lancet Oncology, 7, 951–954. Stringer, E. T. (2007). Action research (3rd ed.). Los Angeles; London: SAGE. Suter, E., Arndt, J., Arthur, N., Parboosingh, J., Taylor, E., & Deutschlander, S. (2009). Role understanding and effective communication as core competencies for collaborative practice. Journal of Interprofessional Care, 23, 41–51. Wittenberg-Lyles, E., Parker Oliver, D., Demiris, G., & Regehr, K. (2010). Interdisciplinary collaboration in hospice team meetings. Journal of Interprofessional Care, 24, 264–273. Yan, J., Gilbert, J. H., & Hoffman, S. J. (2007). World Health Organization Study Group on Interprofessional Education and Collaborative Practice. Journal of Interprofessional Care, 21, 588–589. Zwarenstein, M., Goldman, J., & Reeves, S. (2009). Interprofessional collaboration: Effects of practice-based interventions on professional practice and healthcare outcomes. Cochrane Database of Systematic Reviews, 3, CD000072.
