ABSTRACT
Background
Aging population, enhanced medical opportunities, increased costs and emphasis on patient participation make advance care planning (ACP) important and it provides an evidence‐based framework to ensure patient autonomy in future healthcare decisions. Despite the extensive international research literature supporting ACP, implementation seems challenging. Implementing complex interventions like ACP probably requires a system‐wide approach. However, there is scarce research on the barriers and facilitators to ACP implementation as perceived at national and organizational levels.
Aim
To explore the barriers and facilitators affecting ACP implementation as perceived at national and organizational levels.
Methods
Fifteen in‐depth individual interviews were conducted with stakeholders at national and organizational levels. A semi‐structured interview guide was used, targeting overarching conditions and framework factors that could have an impact. Data was analysed using thematic analysis.
Results
Barriers to ACP implementation described by participants included: Lack of prioritization of ACP at all levels; paradigms and culture of healthcare delivery, personal barriers and attitudes, and lack of competence; lack of collaboration and documentation between levels of healthcare; and lack of systems, routines, time and resources within healthcare services. Facilitators included: Cultural change; support in priority setting; national guideline and incentives; management commitment and support; systems, routines and local implementation efforts; ACP capacity building, implementation competence, and ethical reflection; dissemination of the benefits of ACP, including public education; and better collaboration and communication between levels of healthcare.
Conclusion
There appear to be significant barriers and facilitators to ACP implementation as perceived at the national and organizational levels of healthcare. Although ACP implementation appears to require a combination of top‐down and bottom‐up initiatives, national and organizational barriers and facilitators seem important in setting priorities in clinical practice, with an emphasis on financial incentives. An overarching cultural change of healthcare delivery that supports interventions such as ACP appears to be critical for improved implementation.
Keywords: advance care planning, complex interventions, frail older adults, geriatrics, implementation science, patient participation
Abbreviations
- ACP
advance care planning
- AD
advance directives
- CFIR
the Consolidated Framework for Implementation Research
- COREQ
Consolidated Criteria for Reporting Qualitative Research
- GP
general practitioner
- HCPs
healthcare professionals
- RETHOS
national curriculum regulations for Norwegian health and welfare education
- SDM
shared decision making
- USHT
The Centre for Development of Institutional and Home Care Services
1. Background
With an aging population, increasing chronic diseases and multimorbidity, advancing medical technologies, opportunities and costs, and a greater focus on patient's rights and patient involvement [1, 2, 3, 4, 5, 6, 7], advance care planning (ACP) is becoming increasingly more relevant [3, 4, 5]. ACP is now recognized as a communication process for patients, their relatives and healthcare professionals (HCPs) that facilitates future care and medical decision making in line with the patient's values and preferences [8, 9, 10]. A recent systematic review has shown that ACP can improve outcomes such as quality of patient−physician communication, preference for comfort care, reduced decisional conflict and increased patient−caregiver congruence in preferences and improve documentation [11]. ACP is particularly important for frail older people and those with serious and chronic illnesses [1]. When patients are no longer able to express themselves, previously conducted ACP can help support the patient's autonomy and help HCPs make decisions that better align with the patient's wishes, which is a fundamental ethical requirement [12].
ACP can be defined as a complex intervention [1, 13, 14, 15, 16]. The ACP process involves many different behaviours of the participating patient, relatives and HCPs, different professional skills and expertise of both patients, relatives and HCPs, as well as the interaction of many different settings, systems and norms [8, 10, 13]. Preparing for uncertain future trajectories can be challenging, and complex healthcare decisions, especially at the end of life, require a nuanced approach between hope and reality [17]. Complexity also arises from the conceptualization of ACP as a whole process [18].
1.1. The Evidence‐to‐Practice‐Gap and Implementation Science
Despite the evidence and overall positive attitudes towards ACP among patients and HCPs [18], there is still a large gap between evidence and practice [3, 19]. Although a population survey found that over 90% of Norwegians would like to participate in ACP [20], ACP is not well known, widely used or systematically applied [21]. There are many barriers to ACP implementation [18], and the complexity of ACP may not have received enough attention [13, 14, 15]. Therefore, several emphasize a stronger focus on implementation science [13, 14, 15, 22]. Complex interventions require a system‐wide approach [17, 18, 23] and consideration of the organizational characteristics of healthcare institutions and overarching systems to effect change in practice [24]. While the barriers and facilitators to implementation of ACP at the individual and group levels have been studied both internationally and in Norway [21], to our knowledge, there is still a lack of research on factors at the national and organizational levels influencing ACP implementation. Similarly, research on the organizational and system‐level characteristics that influence the implementation of shared decision making (SDM) is also limited [25]. This could be due to a more general lack of empirical research on implementation barriers and facilitators at the policy level within implementation science.
Implementation science can provide tools to explore complex processes and understand why implementation succeeds or fails [26, 27]. Exploring the barriers and facilitators that affect the level of implementation can assist in the development and implementation of policies and strategies [26]. This article included participants from both the organizational and service levels as well as from higher levels, that is, the municipal and national levels, which are referred to as the ‘inner setting’ and ‘outer setting’, respectively, in one of the most widely used implementation frameworks for studying barriers and facilitators [28], the Consolidated Framework for Implementation Research (CFIR) [24]. The outer setting is defined as the setting in which the inner setting exists [24]. The inner setting, or the healthcare organizations, is defined as the setting in which the intervention or innovation is implemented [24]. Therefore, the aim of this study was to explore the barriers and facilitators affecting ACP implementation as perceived at national and organizational levels in Norway.
2. Methods
This article follows the Consolidated Criteria for Reporting Qualitative Research (COREQ) framework [29] (Additional File S1).
2.1. Design and Participants
This study is one of several sub‐studies within the project: ‘Implementation of advance care planning in the routine care of acutely admitted patients in geriatric units: A cluster‐randomized controlled trial’ [30]. A qualitative approach with individual in‐depth interviews was used to enable an exploratory design. Two interview guides were developed: One for politicians, health authorities and health organization managers, and one for the professional associations and user organizations, with some adaption of the interview guide for the latter groups (Additional File S2). The interview guide covered most constructs of the outer and inner setting in CFIR [24]. We pilot tested the interview guide and made some minor revisions.
Participants were recruited through a mixture of purposive and convenient sampling strategy based on their role as health politicians (n = 1), health authorities at national level (n = 2) such as the Ministry of Health and Care Services and the Directorate of Health, managers of health organizations at different levels (n = 4) such as director of medicine at a regional health trust, head of a medical clinic in a hospital and municipal chief of health and care services, and patient, user and interest organizations (n = 4), relevant professional associations (n = 3) and health education leader (n = 1). Participants were either involved in the development of health services through leadership roles in organizations, overseeing, structuring or shaping healthcare organizations, or through legislative action, policy development, financing of evidence‐based practice delivery or education. Participants were selected based on their ability to provide in‐depth insights into the topic of interest [31]. The authors sought a wide range of informants who were either interested in ACP or, alternatively, in broader concepts such as patient participation, user involvement or patient autonomy, and who were also in positions to influence the ACP implementation. Contact was made by e‐mail with information, notes on relevant topics and a consent to participate form. Participants were recruited from May 2022 to June 2023. In total, 29 participants were successively invited, whereas 15 agreed to participate in the study. However, one participant had reservations about representing the organization and withdrew after the interview. Another participant from the same organization agreed to an interview. Although several declined, often due to a lack of time or other priorities, we managed to have representatives from all the intended positions in this interview study.
The interviews were conducted either at their workplace (n = 5) or digitally via Zoom (n = 10), depending on the participants' preference and practical feasibility. The interviews lasted approximately 1 h each. The interviews were digitally recorded and transcribed verbatim by LB. Of the 15 participants included, the mean age was 57.3 years (range 49−69 years), and most were women. Ten of the participants had clinical backgrounds as nurses, physicians or social workers. Four had experience in doing ACP and three had experience of implementing ACP.
2.2. Research Team and Reflexivity
L.B. (RN, MScN and PhD student with a clinical background from an internal medicine hospital ward) conducted all interviews, joined by R.P. (Prof. of medical ethics, BA, MA and medical doctor), R.F. (Prof. Emerita of medical ethics and medical doctor) or M.R. (Assoc. Prof. and medical doctor) in six interviews. There were no close relationships between the interviewers and the participants, but R.P. and R.F. were acquainted with some of them. L.B. was the least experienced qualitative researcher, whereas R.F., M.R., A.K.W. and R.P. are all well‐experienced. A reflexive journal was kept after each interview, reflecting on L.B.'s role as an interviewer, gaps in knowledge and thinking and the data obtained, which was read continuously by R.F. and R.P.
2.3. The Context of the Study: The Norwegian Healthcare System and the Health Legislation Relevant to ACP
The Norwegian public healthcare system is by and large publicly funded and is divided into primary and specialized (secondary/tertiary) healthcare. Primary healthcare is provided by the 356 Norwegian municipalities, while specialized healthcare is provided by the 11 hospital trusts organized within four regional health authorities [32].
The Norwegian health authorities have overall responsibility for the content and development of the healthcare system. The Ministry of Health and Care Services sets the framework for healthcare and promotes legislation and reform proposals passed by the Norwegian Parliament [33]. The Directorate of Health is a regulatory body under the Ministry of Health and Care Services. It oversees the development of public health and health services, sets national evidence‐based standards, provides advisory services, interprets health laws and regulations and ensures that approved guidelines are implemented [34].
In recent years, efforts have been made at the macro level to strengthen patient participation in Norway [32]. The Patients' Rights Act [35] grants patients the right to be informed about their health status, and to participate in decision making. The Norwegian Health Act also promotes user involvement, as users having the right to participate in the planning, development and evaluation of health services, often through patient and user organizations [32].
Several countries have legislation regulating ACP or advance directives (AD) [36]. However, neither AD nor ACP are explicitly mentioned in Norwegian legislation [35]. In line with this fact and international evidence, several national green and white papers from 2009 onwards [37, 38, 39, 40, 41, 42] have recommended the use of ACP. Recently, the first national guideline on ACP was published in Norway [43].
2.4. Analysis
Our research is positioned within the framework of philosophical hermeneutics, which holds that researchers' interpretations are made possible and limited by a specific horizon of understanding. To avoid the pitfalls of both subjectivism and objectivism, researchers need to develop a hermeneutic consciousness and continuously reflect on their interpretations throughout the research process [44]. The analytical strategy was conducted with inspiration from Braun & Clarke's reflexive thematic analysis [31, 45, 46, 47]. The first phase involved familiarization with the data [31], and semantic coding was carried out by L.B. under the supervision of R.P. and R.F. The Nvivo software was used. The coding was done in a systematic, comprehensive and thorough way by going through the transcribed interviews one by one and looking for data that corresponded to the research question. This was a back‐and‐forth process. Each time a new code was developed, L.B. looked through the previous interviews to see if the new code would capture anything that had been overlooked or coded differently. After we coded the data, we looked for larger patterns across the data set by moving from codes to possible themes. Theme development is an active process [31], and a visual map was developed. We looked for concepts, topics and questions that multiple codes could relate to. Themes were then reviewed by going back through the data set to see if the themes made sense in relation to the coded extracts and the whole data set. This was to check whether the themes told a story that was consistent with the data [31]. This process was also repeated during the writing process. In addition, there was a back‐and‐forth process between L.B., R.F., M.R., A.K.W. and R.P. of refining, defining and naming themes and then write a coherent story about the data set that answers the research question. Participants were not asked to provide feedback on the results.
3. Results
The participants described multiple barriers and facilitators at different levels to ACP implementation as perceived at national and organizational levels. The participants had different types and levels of influence on health policy development. Most of them, particularly those with a healthcare background, expressed a positive attitude towards ACP. However, some were unfamiliar with ACP, some misinterpreted it and some were more critical, especially the user organizations. Those who were most skeptical were those who had the least experience with or knowledge about ACP. Skepticism focused on whether the healthcare can meet every expressed preference, the risk that patients' preferences may change over time, the validity of expressed preferences, and the challenge of distinguishing ACP from other partially related concepts, such as SDM.
We identified four main categories of barriers to ACP implementation at national and organizational levels: Lack of prioritization of ACP at all levels; paradigms and culture of healthcare delivery, personal barriers and attitudes, and lack of competence; lack of collaboration and documentation between levels of healthcare; and lack of systems, routines, time and resources within healthcare services. For each category, we identified facilitators that may serve as possible solutions (Table 1). The quotations representing the categories are shown in Table 2. The following results are presented according to these main categories of barriers. There is some overlap between the topics, and the categories are also linked in different ways.
Table 1.
Overview of the barriers and facilitators to ACP implementation.
| Barriers | Facilitators |
|---|---|
|
|
|
|
|
|
|
|
Table 2.
Quotations representing the categories.
| Quotation number | Categories of barriers and corresponding quotations |
|---|---|
| Lack of prioritization of ACP at all levels | |
| 1 | There is a lack of interest, a lack of empathy, lack of… prioritization of what's important […]. |
| Interview 2 | |
| 2 | Not everyone who becomes a doctor has a genuine interest in establishing the connection… who thinks that such conversations can provide a feeling of satisfaction. |
| Interview 13 | |
| 3 | I think that it's about attitudes as well, of course, but I know that time is a real thing, but having a desire to prioritize it, I think that is important. |
| Interview 9 | |
| 4 | […] the national guidelines are sometimes […] maybe a bit vague. There's a lot of ‘should’ or ‘recommend’. We could have had even clearer guidelines… I wish it was stated even more clearly that this is not just a strong recommendation, but it is actually something we need to implement. |
| Interview 1 | |
| 5 | [There are many things] that have emerged in the last ten years, and which we agree are very important. So I am thinking that I need to implement this, and then that, and then that, and then that, and you end up not being able to address any of these [recommendations]. |
| Interview 14 | |
| 6 | I think this is one of the barriers; we are not able to prioritize. |
| Interview 14 | |
| 7 | I don't think there would have been more ACP if there had been a national guideline. […] we must be better at priority setting than we are today. Information is poured out, and it simply becomes too much for clinical practice. It is valuable to be able to have a vision at a higher level, we need that too, but there needs to be a system close to the patient/citizen that can receive and translate it into practice, and we simply cannot manage everything, even though we would very much like to and we stretch ourselves very far. |
| Interview 7 | |
| 8 | If we were to put it in a national context, I can guarantee that they would say that this needs to be prioritized, and then you, as the manager, would have to choose what to prioritize down. In other words, ‘you [as a manager] must prioritize all these ten things’, and then the manager can choose what needs to be deprioritized. And that's where we struggle. Because we feel like we must include everything. And all local managers face this challenge regularly. You must prioritize everything up and then try to deprioritize something based on your own judgement. And that is… a significant dilemma in the healthcare system today […]. |
| Interview 14 | |
| 9 | It is a very good question, the issue of responsibility. Because it is lacking today. There is no one taking responsibility. It is pulverized. |
| Interview 2 | |
| 10 | […] this is something that we have talked a little about and that I have thought a lot about… if you are frail, if you are an old person who may start to be in need of healthcare services, part of the challenge is that there is often a fragmentation of responsibility… who is actually responsible […]. |
| Interview 9 | |
| 11 | […] a lot of barriers at all levels. |
| Interview 10 | |
| 12 | […] there must be quite a few people involved in this to speed things up. |
| Interview 10 | |
| 13 | I think we have to work from many angles. |
| Interview 13 | |
| 14 | It is clear that it [to implement ACP] takes a long time, it is demanding to both introduce and make this work in practice in many organizations. |
| Interview 7 | |
| 15 | When it comes to implementing complex interventions or system changes, which is very often the case, where you have to change a work process, you often have to change… you have to establish it with the managers and it has to be managed at the system level. |
| Interview 16 | |
| 16 | […] The issue of management support, both in hospitals and in municipal healthcare services… If it is not grounded at all levels of leadership, we won't really make progress. And this applies to both physicians and nurses. |
| Interview 1 | |
| 17 | It is clear that it is not easy to be a manager because we are bombarded with […] things that are important […]. It's very demanding to work closely with patients and meet all demands and expectations, and then make priorities that are, hopefully, good and correct. |
| Interview 7 | |
| 18 | Managers are also just people with different interests, different values in different systems, and what is chosen in which systems and why, that is not an easy question to answer. It is clear that national guidelines will influence, but at the same time so will personal interests of managers, framework conditions, your colleagues, what competence is available in the organization… there are a lot of things that come into play. |
| Interview 7 | |
| 19 | I don't think it would have made any difference [to have national guidelines on ACP]. […] many of us in leadership positions are also healthcare professionals and have our own beliefs about what is important and prioritize accordingly […] |
| Interview 7 | |
| 20 | I wish that the health authorities could be more precise in their priority setting. It is not possible for anyone to do everything. When they encourage us to do everything, some become completely paralyzed and cannot accomplish anything. |
| Interview 7 | |
| 21 | It has to be anchored even to the top of the leadership hierarchy in an organization, I believe, because ACP would not have happened in our municipal if I didn't say that we should do it. |
| Interview 7 | |
| 22 | Knowledge works in knowledge organizations. |
| Interview 15 | |
| 23 | What's in it for me, what does this mean for the managers… it has to do with the quality of the service, and it also has to do with looking after staff because the more we manage to be ahead, the fewer challenges and ‘firefights’ we have to deal with along the way [i.e., patient trajectories]. |
| Interview 1 | |
| 24 | […] orders from the hospital trusts and economic incentives and stuff like that… unfortunately, that's how the healthcare system is rigged right now, that's what's most effective. To implement something out of good intentions and professional enthusiasm… you will not make it based on only those things. |
| Interview 10 | |
| 25 | Of course, if there had been a national guideline on ACP where each hospital trust would be obliged to deliver on it and implement it systematically, I believe this would be the most important thing. |
| Interview 10 | |
| 26 | […] unfortunately, financial incentives work very well. That's one of the most effective means we have. |
| Interview 15 | |
| 27 | […] and it's clear that if you had financial incentives tied to ACP, that would have been stimulating.» |
| Interview 14 | |
| 28 | I understand that you are asking about money now […] Again, I think that it's about learning the benefits of ACP. To me, this is overarching… if it generates or triggers financial incentives or charges, the physicians must nevertheless be able to see the benefits. And of course it will help to tie financial incentives to ACP, I understand that, but first and foremost they have to actually see the benefit of it. |
| Interview 1 | |
| 29 | It may very well be that one should do that [financial incentives]. […] we believe that this will be beneficial for all parties, but it needs to be made visible, and I think that financial incentives for having these conversations would be a good and easy way to get ACP implemented. |
| Interview 4 | |
| 30 | […] it's very hard to get things through. The only thing [that works] is money. ‘If you don't do this, then you will receive fewer grants’, right. Money talks, unfortunately. |
| Interview 2 | |
| 31 | One must motivate those who are to do it. And they have to have ownership. Ownership is an important word. It's a boring word, but it is actually… to have ownership is to understand why you are doing something, and first then… |
| Interview 2 | |
| 32 | […] creating structure and system is a part of making this work and progress, regardless of champions. However, it still requires someone to initiate or drive the process. To believe that it will spontaneously arise as a bottom‐up initiative is optimistic. I think it needs to be facilitated, and there must be initial interest and motivation from someone. |
| Interview 7 | |
| 33 | […] you must have these champions in your system. Those who are passionate and enthusiastic about [the intervention] […]. |
| Interview 7 | |
| 34 | I don't think you can place it [the responsibility of implementation] on individuals, it's way too vulnerable. I believe that focusing on the professional environments is crucial. |
| Interview 10 | |
| 35 | This has to be decided at the political level, that's why I say it should be included in the legislation because I believe it is an important right for people, so we just have to say that, politically, ‘this should happen’. And the levels responsible for delivering the services must ensure that this is implemented in the organization by stating ‘this is what we will implement in our organization’. |
| Interview 4 | |
| 36 | […] yes, but this is not legally binding, so we cannot… we have to make new assessments. |
| Interview 1 | |
| Paradigms and culture of healthcare delivery, personal barriers and attitudes, and lack of competence | |
| 37 | The healthcare system is focused on diagnosis and treatments because we still have resources for a lot of it. However, it is clear that much of what we do is actually unnecessary medicine, and perhaps even overtreatment and mistreatment to some extent. But I believe it is challenging to change this awareness within the population. |
| Interview 10 | |
| 38 | […] to treat pateints is the least time‐consuming, but at the same time it is the most demanding in the long term if you do not give up on useless treatment. This is not a good situation for either us who treat, or for the person being treated or their relatives. |
| Interview 10 | |
| 39 | […] I see that within the medical profession, we are probably very much in treatment mode, so we are a driver of overtreatment ourselves, because medical education focusses a lot on diagnosis and being able to treat people correctly […]. In my experience, the medical profession still has that as its main focus […] and it probably lies in the physicians' soul and education, I think. |
| Interview 10 | |
| 40 | We also see it at the system level that we treat patients up until death in a way, and we have inspection cases where relatives are left wondering what happened and who do not understand the decisions that were made along the way. |
| Interview 13 | |
| 41 | A great many of those who approach us, when it comes to this group that you work with who are frail older people, are relatives, and a great many of them talk about the absence of communication, information, the opportunity for user involvement in the design of their healthcare service. |
| Interview 8 | |
| 42 | […] to sit down and have a very serious conversation with people about difficult things, it requires both that you have a little self‐efficacy and self‐confidence that you can do it, and a little more ‘people skills’ than just, for example, coming in to insert a catheter or take a blood test. |
| Interview 9 | |
| 43 | Yes, absolutely, and this is the most challenging thing we work with [culture change]. But it is possible to make this work… |
| Interview 15 | |
| 44 | […] almost every human is afraid of changes. |
| Interview 2 | |
| 45 | Yes [there is a will to bring about change in relation to ACP], but it will not happen overnight. It takes time. It's like laying brick by brick. |
| Interview 1 | |
| 46 | […] ensuring there is a way to finance it in a manner that does not result in it becoming another new task without funding, then I believe there is a great willingness for this out there. |
| Interview 4 | |
| 47 | […] I mentioned ethical reflection, which I think is a very important tool for working with attitude changes. And my experience is that when you work with or implement something new, then it should always be followed by ethical reflection. |
| Interview 1 | |
| 48 | […] your actions are the result of your attitudes and what you do is entirely dependent on you having sufficient knowledge and that you have made some reflections in relation to the importance of patient's expressing their wishes. |
| Interview 3 | |
| 49 | It is actually very important that the concept [ACP] gets a greater emphasis in the education of healthcare professionals. |
| Interview 1 | |
| 50 | I think if you see how important each individual thing is, then it is perhaps easier to prioritize something over something else. |
| Interview 14 | |
| 51 | […] it's about defining the time, because once you've done this job [ACP], with the relatives and the patient… this is very often a patient that we see again, but then things may be clarified. Everyone has a bit more peace of mind during the stay, there is a limitation to what needs to be done and everyone accepts the situation to a greater extent. So, I believe that time can be saved in future hospital admissions if time has been invested in the first admission. |
| Interview 10 | |
| 52 | It's perhaps the angle that is politically important; this is a way of also reducing resources, right… which is of interest at the moment, and we will have big challenges in the future with [recruitment of] health personnel. […] One of the impacts will be the reduced use of resouces, and we need to reduce the use of resources. We really have no choice in that regard. |
| Interview 13 | |
| Lack of collaboration and documentation between levels of healthcare | |
| 53 | It is collaboration, really, a key term again. |
| Interview 12 | |
| 54 | […] the issue of not having the preferences follow the patient where he is [between healthcare levels]… and ACP must also be recorded electronically in the journal system, either in an individual plan, in a palliative plan or in some type of ACP document, right, so that it doesn't happen that the patient is admitted to hospital and then the previous ACP is gone. |
| Interview 1 | |
| 55 | I don't understand why we don't take a national step; the fact that information does not follow the patient around the healthcare system is very serious. Unfortunately, I believe that this will be our ruin in the future if we do not address it. |
| Interview 6 | |
| 56 | Hans, aged 96 says: "I don't want life‐prolonging treatment". Then it is important that this is written in the patient journal because we do have some cases where the relatives come afterwards and say, "You let him die". And then it's extremely important that the ACP is documented, that the patient is informed, that the patient himself chooses. And we are not always good at that. |
| Interview 8 | |
| Lack of systems, routines, time and resources within healthcare services | |
| 57 | It is the managers who must plan and structure in order to create space [for implementation]. […] there are many patients who all have demands and rights to services, and healthcare professionals are working relatively fast [in everyday practice], and it's pretty hopeless to call for more resources because there aren't more professionals to get hold of either, so we have to organize ourselves. We have to want it and bet on it and dare to set these priorities. |
| Interview 7 | |
| 58 | You need someone who is ‘wearing the shoes’ but also can provide support and guidance. |
| Interview 15 | |
| 59 | […] that hour with a slightly demanding conversation saves you time in the next few days, which are crucial for the patient. […] when we have relatives chasing the physicians, and we don't have time, if you add up all these short, frustrating conversations with relatives over the course of a week, you've actually spent more than a good hour on it, and none of it has been positive. So, there is something about the cumulative time spent that is important to focus on, as well as using resources correctly. |
| Interview 10 | |
| 60 | My counter argument to the time and resource barriers is that carrying out ACP and enshrining it in palliative care plans, for example, saves time, even if that particular process takes some time, in the long run you will save a lot of time and work. |
| Interview 1 | |
| 61 | It is quite easy to say: "We don't have time for that" when you might not fully understand the effect. |
| Interview 1 | |
3.1. Lack of Prioritization of ACP at All Levels
Participants emphasized a widespread lack of prioritization of ACP from the national level to the clinical level. The lack of national signals (e.g., national guidelines on ACP and incentives) results in lower priority in clinical practice. Disinterest in the frail older population and in communicating and building relationships with older patients, as well as reluctance to address ethically difficult issues, were also cited as factors (quotations 1−3). While ACP is recommended in more general guidelines, specific wording is lacking (quotation 4). At the same time, the rapid development of new treatments and other interventions, as well as the general increase in recommendations, regulations and guidelines from the Directorate of Health, carries the risk of "information overload" (interview 15). As a result, it can be difficult for healthcare managers to make priorities (quotations 5−8). Some mentioned the ‘fragmentation’ of responsibility for implementation and in the care of older people (quotations 9 & 10). Participants also pointed to the challenges associated with the complexity of ACP implementation, which requires collaboration across all levels and the simultaneous involvement of multiple stakeholders (quotations 11−15).
3.1.1. How to Deal With These Barriers?
3.1.1.1. Clear Signals and Incentives From the National Health Authorities
While some expressed scepticism about additional guidelines and their effectiveness, several called for a clear signal from the national level to prioritize ACP. The Ministry of Health has issued ACP mandates through Parliamentary White Paper No. 24, but some wanted clarification of responsibility in the implementation of ACP. Furthermore, a national guideline on ACP must be accompanied by local implementation, for example, adaptation and integration into local routines. Others called for a nationally coordinated implementation project with a dedicated team and a ‘resource bank’ in which experiences and initiatives are collected nationwide.
Two main incentives from the national health authorities for behaviour change or outcome improvement were identified (quotation 24). Quality indicators, where organizations implement certain practices and are measured against them, were seen as legitimizing factors in priority setting (quotation 25). However, some emphasized that successful implementation requires clinicians to see the benefits (see subcategory 3.2.1.3 Experiencing and sharing the benefits of ACP) to fully engage with it. In addition, too many national orders can lead to capacity and priority setting issues. Financial incentives were described as the most effective facilitator, especially in priority setting, although some were also sceptical (quotations 26−30).
3.1.1.2. Management Commitment and Support
Management commitment to implementation was seen as crucial (quotations 15 & 16). While it is important for managers to be informed and aware, they also need to provide support, for example by showing genuine motivation, interest, a positive attitude, follow‐up and giving clear expectations. The power to have interventions implemented was argued to be influenced by managerial enthusiasm rather than level or hierarchy, but priority setting issues emerged again as a significant barrier (quotation 17). However, gaining management commitment and support appeared to be complex and influenced by personal interests, system values, organizational dynamics, framework conditions and staff competence (quotations 18 & 19). Managers argued that top‐down leadership will only be effective if there is enthusiasm at the clinical level. Further, there was discussion about whether the Regulation on Leadership and Quality Improvement in Healthcare sufficiently emphasizes system‐wide accountability for continuous improvement and implementation efforts. Some participants expressed a desire for clearer national guidance on how to prioritize certain recommended interventions over others (quotation 20).
Municipal health managers asserted that they have significant influence over the implementation of ACP in their municipalities (quotation 21). They added the importance of ethical competence among managers to set fair priorities and make local adjustments in implementation. Providing managers with ACP knowledge and its benefits was argued important to improve implementation (quotations 22 & 23).
3.1.1.3. Personal Interest, Ownership and Champions
Personal interests were considered important when setting priorities at all levels. One healthcare manager highlighted their own interest in ACP as critical to its implementation in their organization (quotations 19 & 21). Ownership of ACP implementation was seen as critical at both organizational and clinical levels and requires a shared initiative (quotations 31 & 32). Achieving this ownership requires education, experiencing and sharing the benefits of ACP, passionate champions and political and organizational support. Champions play an important role in local implementation as they bring passion and competence and enhance the skills of colleagues (quotation 33). However, some argued that for sustainable integration into routine practice, it is important to involve all staff (quotation 34).
3.1.1.4. ACP Legislation
Some felt that establishing a legal right for patients to be offered ACP would be necessary to prioritize ACP in clinical practice (quotation 35), while others argued that the lack of a legally binding AD could lead HCPs to overlook earlier conversations (quotation 36). Some were more sceptical of explicit legislation on ACP, emphasizing their concerns about the validity of preferences over time and that not everything should be legislated in detail.
3.1.1.5. Implementation Responsibility
Opinions differed on who should be responsible for implementing ACP, including individual HCPs, health service managers at different levels or national health authorities. Some suggested that the latter should create a common understanding and a generic framework for ACP that allows for local adaptation. Most agreed that local stakeholders should drive implementation. Other facilitators mentioned were basic knowledge of implementation science, including inclusion in health and welfare education, management support in local implementation efforts and the upcoming guideline on implementation in the healthcare sector. Interdisciplinary collaboration between levels of healthcare and a community‐based coordinator for frail older patients were mentioned as possible measures to address complexity and clarify responsibilities.
3.2. Paradigms and Culture of Healthcare Delivery, Personal Barriers and Attitudes, and Lack of Competence
Society's focus on medical advancements and life prolongation, the medical education culture with an emphasis on specialized treatment, and public expectations were described as barriers to ACP. Some argued that these factors lead to overtreatment of patients (quotations 37−40). Participants experienced no external or political pressure to implement ACP, neither from politicians, nor from professional associations or the professional environments. Some felt that educating the public on these issues is a challenge, as the media focuses on treatment and survival, making it difficult to discuss treatment limitations. The "ombudsmen" highlighted that the complaints of the frail older patients were mainly due to a lack of communication, information and patient participation (quotation 41), indicating a culture in which such tasks are often neglected. In addition, participants recognized a widespread lack of ACP knowledge and competence in communicating other and related sensitive and ethically challenging topics such as quality of life, prognosis, life prolongation, treatment limitations, end of life and death. Some argued that lack of competence and understanding of ACP may result in ACP not being initiated and implemented. Personal barriers such as fear, lack of openness, readiness and interpersonal skills (quotation 42), or lack of interest in relationship building (quotation 2) could also contribute to the avoidance and deprioritization of ACP.
3.2.1. How to Deal With These Challenges?
3.2.1.1. Change of Culture and Ethical Reflection
Changing attitudes was described as one of the most important tasks (quotations 43 & 44), but some participants reported that there is a willingness to change and to implement ACP (quotation 45). However, financial incentives were argued important to realize this potential (quotation 46). Several participants expressed that the culture of healthcare delivery needs to be changed through increased competence and awareness of overtreatment, treatment limitations, discussions about quality of life and death, and palliative care. Ethical reflection and increased education about ethics, along with support from clinical ethics committees were identified as important for changing attitudes and for implementing ACP (quotation 47).
3.2.1.2. ACP in Both Health and Public Education
Participants emphasized the integration of ACP into basic and specialized education for health and welfare (quotations 48 &49) through collaboration between the Ministries of Health and Education and clinical experts. ACP was seen as a possible measure to implement and operationalize important goals and ideals in the National Curriculum Regulations for Health and Welfare Education (RETHOS). The Norwegian Association of Local and Regional Authorities (KS), which represents all municipalities, could also facilitate the dissemination of this type of intervention in municipal implementation. Other facilitators included practical training and mentoring programs in clinical practice anchored in management support, research and development projects evaluating ACP and measures to raise public awareness of ACP.
3.2.1.3. Experiencing and Sharing the Benefits of ACP
Participants emphasized the importance of HCPs experiencing and sharing the benefits of ACP. This requires organizations to ensure that staff can prioritize ACP (quotations 48 & 50). They argued that ACP can improve patient and family involvement, support decision making, reduce confusion, improve patient and relatives' experiences, clarify expectations, improve understanding of the illness trajectory and potentially reduce over‐ and undertreatment. However, they pointed out that the impact may not be immediately apparent in clinical practice (quotation 51), highlighting the need for incentives from health authorities to promote ACP and document its impact. Others emphasized the importance of demonstrating long‐term resource savings to generate political interest (quotation 52). Wider experience of ACP could be facilitated through regular local education, simulation training and mentorship if supported by local managers. In addition, research, documentation, and the sharing of patients' and relatives' experiences were highlighted as an important facilitator. The need for additional funding for local implementation projects and a greater responsibility of professional associations in promoting ACP was emphasized.
3.3. Lack of Collaboration and Documentation Between Levels of Healthcare
The absence of overarching framework conditions hinders adequate communication and collaboration between the different levels of healthcare, for example, between GPs and hospital physicians. The lack of a joint journal and communication system to ensure the transfer of patient records leads to inconsistencies in patient care across the healthcare system (quotations 53−56). ACP was seen as particularly vulnerable to these general barriers to collaboration, as realizing the full potential of ACP depends on effective documentation of patients' preferences between the levels of healthcare.
3.3.1. How to Deal With These Challenges?
Facilitators mentioned included the development of a joint national electronic journal and communication system, as well as financial incentives to support joint conversations between levels of healthcare. A common understanding of the term ‘ACP’ across services was also highlighted. Technological solutions included video consultations between levels and with relatives, and automatic ACP notifications in the journal system when a formal health decision is made or at certain intervals. Community‐based coordinators for frail older patients were also mentioned as a potential facilitator.
3.4. Lack of Systems, Routines, Time and Resources Within the Healthcare Services
According to the participants, healthcare organizations lack systems and routines that support the implementation of ACP. Other barriers included limited time and resources, the fast‐paced nature of healthcare which is also more focused on other types of interventions, short lengths of stay in hospitals, high staff turnover and increased workload, especially for the community service due to the coordination reform since 2012 with more responsibilities in patient care. Other challenges were insufficient physical rooms for sensitive conversations, difficulties in involving GPs, especially due to the shortage of GPs in Norway in recent years, and the lack of available geriatricians.
3.4.1. How to Deal With These Challenges?
ACP integration into local routines were considered essential: "What you cannot put into system will not happen" (interview 3). Some health managers argued that despite a lack of resources, they are responsible for structuring and creating space for implementation (quotation 57), including identifying workflows and forming local implementation teams with experienced HCPs (quotation 58). Other facilitators included national guideline on ACP, an ACP toolkit, integration of ACP into quality systems through quality indicators and annual skill development plans, knowledge of systematic implementation and ethical reflection. External implementation support, such as from the Centre for Development of Institutional and Home Care Services (USHT) which is a national initiative to achieve the goals outlined in the white papers, was highlighted as critical to implementation in community health settings. Sufficient funding for the USHTs was also mentioned. Participants emphasized the potential time and resource savings in the long term. Some highlighted the importance of documenting these potential effects of ACP as the most effective way to counteract barriers related to lack of time and resources (quotations 59−61).
4. Discussion
This study explored barriers and facilitators to the implementation of ACP as perceived at national and organizational levels with participants relevant to health policy development. ACP is not yet well known and applied in the Norwegian healthcare system, although there is a positive attitude towards ACP. We found barriers such as lack of prioritization, competence, collaboration, systems, routines, time and resources, followed by challenges related to paradigms, culture, personal barriers and attitudes. National and organizational factors appear to play an important role in setting clinical priorities. Below, we discuss some of the barriers that may explain why ACP is not a higher priority.
In the last 50−60 years, there has been a movement from the treatment‐oriented biomedical paradigm to patient‐centred care, and, more recently, there has been a further development to person‐centred care. This underscores the need to know the person behind the illness to engage the person in his or her own care [48]. Here, ACP can play a crucial role. Importantly, ACP has also moved away from a specific focus on treatment preferences (as with ADs) to include the broader context of the patient's life and values [8]. However, the treatment‐focused paradigm and culture in healthcare still present significant challenges to ACP implementation. A recent evaluation of the implementation of a nationwide ACP program demonstrates the need to create an ACP‐supportive culture within and outside organizations [49]. Our findings suggest that certain patient groups and diseases are more likely to receive interest compared to others, although it was challenging for the participants to talk about prestige and hierarchical status in medicine. Prestige, defined as regard or esteem, is usually ranked in a hierarchy [50]. ACP, which can be seen as a "softer" intervention focusing on communication about sensitive topics and relationship building, especially with older people, may not meet the criteria for higher prestige as described in Norredam and Album [50]. Studies have shown that geriatrics has a low status among physicians, medical students and nurses [51, 52]. Also, a recent report examining resource allocation in community healthcare further confirmed the older patients as the losers in the battle for resources [53]. This highlights the importance of understanding cultural conceptions of disease in medicine, as prestige can explicitly influence priority setting [50, 54]. However, as there can be an under‐provision of community care and comprehensive approaches, there is also an over‐utilization of certain specialized services for the older patients [55]. Raising awareness of these discussions, including consideration of patient perspectives to balance specialized medical approaches with more general and comprehensive ones [55], examining how economics influence hierarchy and priority setting, and challenging the prestige hierarchy, seem important for better implementation of interventions such as ACP.
There seems to be a fragmentation of responsibility in ACP implementation. Although there are recommendations at the national level, there is a lack of implementation at organizational level. The Directorate of Health is responsible for "ensuring that the approved policies are implemented" [56], but it was argued that their role in implementation is to make guidelines "implementable" rather than to actively drive implementation. The role of health managers in implementation is highlighted in the Regulation on Leadership and Quality Improvement in Health and Care Services [57]. This regulation mandates managers to have a comprehensive understanding of organizational risk and gives them significant autonomy but also places great responsibility on them. Although participants agreed that implementation effort must be carried out from the organizational and clinical levels, managers seem to consistently struggle with challenging priority setting due to information overload and a lack of support and guidance in setting priorities. In addition, the influence of personal interests and hierarchy in medicine can lead to divergence in what is being implemented. Participants struggled to elaborate on this, which may indicate a need for clearer guidelines on assigning responsibility. Additionally, there appears to be a need for increased competency in implementation science in healthcare, echoing other articles [8, 13, 15, 18, 22, 23, 58, 59, 60, 61, 62, 63, 64], followed by more dedicated resources. The inclusion of implementation science in RETHOS and undergraduate healthcare education could be beneficial. The lack of collaboration between levels of healthcare and a joint electronic journal and communication system further contributes to the fragmentation of responsibility. This challenge is argued to be one of the healthcare system's weaknesses and the fee‐for‐service model hinders shared responsibility and collaboration in patient care [65].
ACP implementation appears to be complex and faces numerous challenges in the healthcare system, as highlighted elsewhere [49]. It seems important to recognize ACP as a complex intervention [8, 14, 15, 59, 60] that requires a system‐wide approach [17, 18, 23] and the application of the principles of complexity science [65]. An article discussing the challenges of implementing SDM argues that a cultural change is needed that requires efforts in multiple arenas [66], which is also consistent with the findings in our study. The importance of the system level for implementation is probably underestimated in ACP implementation, "It got to be about system‐level change" [15, p.357]. The international consensus definition and recommendations for ACP, supported by the European Association for Palliative Care, [67] also emphasize the role of governments and healthcare organizations in securing funding and organizational support. However, organizational change is more likely to succeed if HCPs can influence the change, are prepared for them, and recognize the value it has for patients [68]. Participants in this study strongly believed that increased knowledge and experience of the benefits would open HCPs' eyes to ACP. Furthermore, sharing these benefits would catalyze implementation, which is also supported elsewhere [58].
Priority setting have profound significance, ultimately influencing patient outcomes. The findings of this study indicate that simply recommending ACP in national guidelines is insufficient to prioritize ACP in clinical practice. This, in turn, may lead to potential shortcomings in the quality of care provided for frail older people and people with serious and chronic illnesses. The official Norwegian report on palliative care's [40] endorsement of ACP, advocates for person‐centred approaches and organizational changes with financial incentives. While several were sceptical of financial incentives because they felt that focusing on economy would reduce quality or be the sole motivation for prioritizing ACP, which is also discussed elsewhere [49], financial incentives were described as the most effective facilitator in the current incentive‐based system. On the other hand, experiencing and sharing the benefits of ACP was also highlighted as an important facilitator. A fundamental question in ACP implementation is how to motivate clinicians to implement interventions whose benefits may not be immediately apparent or evident in their own clinical practice. There is also the question of whether financial incentives increase the likelihood of recognizing these benefits, or whether ACP would ultimately just be a "checklist task". Another question that implicitly arises is whether ACP implementation can be prioritized within existing budgets and resources, and whether ACP can free up resources in the longer term or bigger picture, including in terms of time as an insurmountable clinical barrier. Nevertheless, it seems sensible to create financial incentives to broaden the clinical experience with ACP. However, it is argued by the managers that a top‐down approach alone would not be effective and sustainable, and the process of gaining national attention appears to require clinical interest, which is also supported elsewhere [68]. This again highlights the emphasise on the complexity and a system‐wide approach in priority setting and implementation efforts. As research plays a fundamental role in setting priorities [69], these findings may contribute to more effective strategies for better integration of ACP into routine practice.
4.1. Strenghts and limitations
This study might be the first of its kind and provides an in‐depth exploration of the relevant factors at national and organizational levels in ACP implementation. Additionally, we have included the voice of users through professional associations, user and interest organizations.
Given the different levels of influence on national policy development, distinguishing between the different levels of participants was a challenge. This complexity was compounded by potential differences in participants' backgrounds, their proximity to clinical practice and their experience of ACP and/or its implementation, resulting in varying degrees of insights. It was challenging to distinguish factors between the outer and inner settings, which is also discussed in Damschroder et al. [24]. In addition, it was a challenge to separate factors at the individual and clinical level from those at the organizational level and cultural domain in which HCPs operate. There are likely other ways to describe and categorize factors across different levels, as well as barriers and facilitators, than those outlined in this study.
5. Conclusion
There appear to be significant barriers and facilitators to ACP implementation as perceived at the national and organizational levels. It seems important with a cultural change from medicalization and treatment focus to more person‐centred care. Since not all the benefits of ACP are immediately apparent to those who practise ACP or obvious to those who do not, and given that effective collaboration and communication between levels of healthcare is crucial forfully realizing ACP's potential, more unified and coordinated efforts at all levels seem essential. The initiative may start with HCPs signalling interest in ACP. The national level could emphasize the importance of ACP through national guidelines and, probably most importantly, financial incentives to prioritize ACP in clinical practice. Additional support in priority setting from the national level seems important for information‐overloaded healthcare managers. However, ACP implementation should probably be facilitated locally including management support, ethical reflection and putting ACP implementation into systems and routines. Increased ACP capacity building, experience, and dissemination, both for HCPs and the public, through professional environments, professional associations and user and interest organizations also seem important. Finally, a better understanding of the interconnected barriers and facilitators at different levels of healthcare delivery is important, implying a complex interplay between bottom‐up and top‐down initiatives and efforts. Knowledge of implementation science and complex interventions can facilitate this understanding and effort.
Author Contributions
R.P., R.F. and M.R. contributed to the conception. R.P. and L.B. worked on the design of this study. L.B., M.R., R.F. and R.P. contributed to the data collection, while all authors made contributions to the analysis and interpretation of the data. L.B. drafted the manuscript, with revision contributions from R.F., M.R., A.K.W. and R.P. All were involved in revising the final draft, and all gave their final approval of the version to be published. All authors agreed to be responsible for all aspects of the work and to ensure that issues related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Ethics Statement
This research complies with international and national standards and has been performed in accordance with the Declaration of Helsinki. Sikt, the Norwegian Agency for Shared Services in Education and Research, approved the study on 25.05.22 with reference number 805491. An application for prior approval of the research project was also processed by the Regional Committee for Medical and Healthcare Research Ethics (REK). They concluded that the project as health service research will not acquire new knowledge about health or illness. The project therefore falls outside REK's mandate under the Norwegian Health Research Act § 10, cf. § 10 of the Research Ethics Act. Their assessment was concluded on 09.04.22 with reference number 457837. Verbal and written informed consent to participate in the study has been obtained from all participants.
Conflicts of Interest
The authors declare no conflicts of interest.
Supporting information
Additional file 1 COREQ Checklist version2.
Additionale file 2 interview guides.
Acknowledgements
We would like to thank our colleagues from our project ‘Implementation of advanced care planning in the routine care of acutely admitted patients in geriatric units—a cluster‐randomized controlled trial’. Especially thanks to Marc Ahmed, Siri Færden Westbye and Lisbeth Thoresen for their suggestions on the interview guide and possible informants. We also thank Karina Egeland, PhD and implementation researcher, for inputs on an early draft, and Jonathan Adams, PhD Fellow and colleague, for proofreading quotations and the interview guide. The study is funded by the Research Council of Norway. The funding source had no role in the design of this study or during its execution, analyses, interpretation of the data or decision to submit results.
Data Availability Statement
The research data that support the findings of this study are qualitative interview transcripts, which are not available due to privacy.
References
- 1. Thomas K., Lobo B., and Detering K., Advance Care Planning in End of Life Care (Oxford University Press, 2017). [Google Scholar]
- 2. Barnett M. D., Bennett‐Leleux L. J., and Guillory L. A., “End‐of‐Life Treatment Preferences and Advanced Care Planning Among Older Adults,” Death Studies 48, no. 2 (2023): 95–102. [DOI] [PubMed] [Google Scholar]
- 3. Frechman E., Dietrich M. S., Walden R. L., and Maxwell C. A., “Exploring the Uptake of Advance Care Planning in Older Adults: An Integrative Review,” Journal of Pain and Symptom Management 60, no. 6 (2020): 1208–1222.e59. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4. Brinkman‐Stoppelenburg A., Rietjens J. A., and van der Heide A., “The Effects of Advance Care Planning on End‐of‐Life Care: A Systematic Review,” Palliative Medicine 28, no. 8 (2014): 1000–1025. [DOI] [PubMed] [Google Scholar]
- 5. Tolle S. W. and Hedberg K., “Effectiveness of Advance Care Planning: What Works, What Doesn't, and What Needs to Change?,” Journal of Clinical Ethics 33, no. 3 (2022): 210–219. [PubMed] [Google Scholar]
- 6. Aldridge M. D. and Bradley E. H., “Epidemiology and Patterns of Care at the End of Life: Rising Complexity, Shifts in Care Patterns and Sites of Death,” Health Affairs 36, no. 7 (2017): 1175–1183. [DOI] [PubMed] [Google Scholar]
- 7.“Ageing and Health [Web Page],” World Health Organization, 2022, https://www.who.int/news‐room/fact‐sheets/detail/ageing‐and‐health.
- 8. Hickman S. E., Lum H. D., Walling A. M., Savoy A., and Sudore R. L., “The Care Planning Umbrella: The Evolution of Advance Care Planning,” Journal of the American Geriatrics Society 71, no. 7 (2023): 2350–2356. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9. Malhotra C., “Advance Care Planning: It Is Time to Rethink Our Goals,” Journal of the American Geriatrics Society 71, no. 12 (2023): 3963–3966. [DOI] [PubMed] [Google Scholar]
- 10. Sudore R. L., Walling A. M., Gibbs L., Rahimi M., and Wenger N. S., “Implementation Challenges for a Multisite Advance Care Planning Pragmatic Trial: Lessons Learned,” Journal of Pain and Symptom Management 66, no. 2 (2023): e265–e273. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11. Malhotra C., Shafiq M., and Batcagan‐Abueg A. P. M., “What Is the Evidence for Efficacy of Advance Care Planning in Improving Patient Outcomes? A Systematic Review of Randomised Controlled Trials,” BMJ Open 12, no. 7 (2022): e060201. [Google Scholar]
- 12. Aw D., Hayhoe B., Smajdor A., Bowker L. K., Conroy S. P., and Myint P. K., “Advance Care Planning and the Older Patient,” QJM: Monthly Journal of the Association of Physicians 105, no. 3 (2012): 225–230. [DOI] [PubMed] [Google Scholar]
- 13. McMahan R. D., Tellez I., and Sudore R. L., “Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review,” Journal of the American Geriatrics Society 69, no. 1 (2021): 234–244. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14. Sudore R. L., Hickman S. E., and Walling A. M., “Controversies About Advance Care Planning,” Journal of the American Medical Association 327, no. 7 (2022): 685. [DOI] [PubMed] [Google Scholar]
- 15. Periyakoil V. S., Gunten C. F., Arnold R., Hickman S., Morrison S., and Sudore R., “Caught in a Loop With Advance Care Planning and Advance Directives: How to Move Forward?,” Journal of Palliative Medicine 25, no. 3 (2022): 355–360. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16. Skivington K., Matthews L., Simpson S. A., et al., “A New Framework for Developing and Evaluating Complex Interventions: Update of Medical Research Council Guidance,” BMJ 374 (2021): n2061‐n. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17. Lereim Sævareid T. J., Aasmul I., and Hjorth N. E., “Implementation of Advance Care Planning in Norway,” Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 180 (2023): 163–167. [DOI] [PubMed] [Google Scholar]
- 18. Jimenez G., Tan W. S., Virk A. K., Low C. K., Car J., and Ho A. H. Y., “Overview of Systematic Reviews of Advance Care Planning: Summary of Evidence and Global Lessons,” Journal of Pain and Symptom Management 56, no. 3 (2018): 436–459.e25. [DOI] [PubMed] [Google Scholar]
- 19. Rietjens J., Korfage I., and Taubert M., “Advance Care Planning: The Future,” BMJ Supportive & Palliative Care 11, no. 1 (2021): 89–91. [DOI] [PubMed] [Google Scholar]
- 20. Sævareid T. J. L., Pedersen R., and Magelssen M., “Positive Attitudes to Advance Care Planning: A Norwegian General Population Survey,” BMC Health Services Research 21, no. 1 (2021): 762. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21. Westbye S. F., Rostoft S., Romøren M., Thoresen L., Wahl A. K., and Pedersen R., “Barriers and Facilitators to Implementing Advance Care Planning in Naïve Contexts: Where to Look When Plowing New Terrain?,” BMC Geriatrics 23, no. 1 (2023): 387. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22. Fromme E. K., Montgomery C., and Hickman S., “Advance Care Planning in the United States: A 2023 Review,” Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 180 (2023): 59–63. [DOI] [PubMed] [Google Scholar]
- 23. Combes S., Nicholson C. J., Gillett K., and Norton C., “Implementing Advance Care Planning With Community‐Dwelling Frail Elders Requires a System‐Wide Approach: An Integrative Review Applying a Behaviour Change Model,” Palliative Medicine 33, no. 7 (2019): 743–756. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24. Damschroder L. J., Reardon C. M., Widerquist M. A. O., and Lowery J., “The Updated Consolidated Framework for Implementation Research Based on User Feedback,” Implementation Science 17, no. 1 (2022): 75. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25. Scholl I., LaRussa A., Hahlweg P., Kobrin S., and Elwyn G., “Organizational‐ and System‐Level Characteristics That Influence Implementation of Shared Decision‐Making and Strategies to Address Them: A Scoping Review,” Implementation Science 13, no. 1 (2018): 40. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26. Nilsen P., “Making Sense of Implementation Theories, Models and Frameworks,” Implementation Science 10, no. 1 (2015): 53. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27. Moullin J. C., Dickson K. S., Stadnick N. A., et al., “Ten Recommendations for Using Implementation Frameworks in Research and Practice,” Implementation Science Communications 1, no. 1 (2020): 42. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28. Kirk M. A., Kelley C., Yankey N., Birken S. A., Abadie B., and Damschroder L., “A Systematic Review of the Use of the Consolidated Framework for Implementation Research,” Implementation Science: IS 11, no. 1 (2016): 72. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29. Tong A., Sainsbury P., and Craig J., “Consolidated Criteria for Reporting Qualitative Research (COREQ): A 32‐Item Checklist for Interviews and Focus Groups,” International Journal for Quality in Health Care 19, no. 6 (2007): 349–357. [DOI] [PubMed] [Google Scholar]
- 30. Romøren M., Hermansen K. B., Sævareid T. J. L., et al., “Implementation of Advance Care Planning in the Routine Care for Acutely Admitted Patients in Geriatric Units: Protocol for a Cluster Randomized Controlled Trial,” BMC Health Services Research 24, no. 1 (2024): 220. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31. Braun V. and Clarke V., Successful Qualitative Research: A Practical Guide for Beginners (Sage, 2013). [Google Scholar]
- 32. Kasper J., Lager A. R., Rumpsfeld M., et al., “Status Report From Norway: Implementation of Patient Involvement in Norwegian Health Care,” Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 123–124 (2017): 75–80. [DOI] [PubMed] [Google Scholar]
- 33. Nylenna M. and Braut G. S., “Helsetjenesten [Web Page],” Store Norske Leksikon, 2022, https://sml.snl.no/helsetjenesten.
- 34.“Helsedirektoratet,” Regjeringen.no., https://www.regjeringen.no/no/dep/hod/org/etater‐og‐virksomheter‐under‐helse‐‐og‐omsorgsdepartementet/underliggende‐etater/helsedirektoratet/id213297/.
- 35.“Lov om pasient‐ og brukerrettigheter (pasient‐ og brukerrettighetsloven),” LOV‐2008‐06‐20‐44, 1999, https://lovdata.no/dokument/NL/lov/1999‐07‐02‐63.
- 36. Porcar Rodado E., Peral Sanchez D., and Gisbert Grifo M., “Advance Directives. Comparison of Current Legislation Within the European Union,” Spanish Journal of Legal Medicine 47, no. 2 (2021): 66–73. [Google Scholar]
- 37.“Beslutningsprosesser ved begrensning av livsforlengende behandling [National Guideline],” Helsedirektoratet, 2013, https://www.helsedirektoratet.no/veiledere/beslutningsprosesser‐ved‐begrensning‐av‐livsforlengende‐behandling.
- 38. Skår Å., Juvet L., Smedslund G., Bahus M. K., and Fure R. P. B., “Livets sluttfase: om å finne passende behandlingsnivå og behandlingsintensitet for alvorlig syke og døende. oversikt over systematiske oversikter [Report],” Kunnskapssenteret, Oslo, 2014, https://www.fhi.no/publ/2014/livets‐sluttfase‐‐‐om‐a‐finne‐passende‐behandlingsniva‐og‐behandlingsintens/.
- 39. Haugen D. F., Sogstad M., Eidsvik H. N., et al., “Rapport om tilbudet til personer med behov for lindrende behandling og omsorg mot livets slutt: å skape liv til dagene [Rapport], Helsedirektoratet, Oslo, 2015, https://www.regjeringen.no/contentassets/a4b45c8f57e741bdbb3bfb32c6b9ef43/rapport_hdir_palliasjonsrapport_160315.pdf.
- 40.“NOU 2017:16. På liv og død: Palliasjon til alvorlig syke og døende [Official Norwegian Reports],” Helse‐ og omsorgsdepartementet, 2017, https://www.regjeringen.no/no/dokumenter/nou‐2017‐16/id2582548/.
- 41.“Meld. St. 24 (2019‐2020) Lindrende behandling og omsorg,” Helse‐ og omsorgsdepartementet, https://www.regjeringen.no/contentassets/52d05db7090c411abc7a3f4d47124119/no/pdfs/stm201920200024000dddpdfs.pdf.
- 42.“Meld. St. 7 (2019‐2020) Nasjonal helse‐ og sykehusplan 2020‐2023 [White paper], Helse‐ og omsorgsdepartementet, 2019, https://www.regjeringen.no/no/dokumenter/meld.‐st.‐7‐20192020/id2678667/.
- 43.“Forhåndssamtaler og planlegging ved begrenset forventet levetid [National guideline],” Helsedirektoratet, Oslo, https://www.helsedirektoratet.no/faglige‐rad/Forhandssamtaler‐og‐planlegging‐ved‐begrenset‐forventet‐levetid#apiUrl.
- 44. Gadamer H.‐G., Truth and Method, Vol. 2 (Stagbooks, 1989). [Google Scholar]
- 45. Braun V. and Clarke V., “Using Thematic Analysis in Psychology,” Qualitative Research in Psychology 3, no. 2 (2006): 77–101. [Google Scholar]
- 46. Braun V. and Clarke V., “One Size Fits All? What Counts as Quality Practice in (Reflexive) Thematic Analysis?,” Qualitative Research in Psychology 18, no. 3 (2021): 328–352. [Google Scholar]
- 47. Braun V., Clarke V., and Braun V., Thematic Analysis: A Practical Guide (SAGE, 2022). [Google Scholar]
- 48. Håkansson Eklund J., Holmström I. K., Kumlin T., et al., “‘Same Same or Different?’ A Review of Reviews of Person‐Centered and Patient‐Centered Care,” Patient Education and Counseling 102, no. 1 (2019): 3–11. [DOI] [PubMed] [Google Scholar]
- 49. Malhotra C. and Ramakrishnan C., “Complexity of Implementing a Nationwide Advance Care Planning Program: Results From a Qualitative Evaluation,” Age and Ageing 51, no. 10 (2022). [DOI] [PubMed] [Google Scholar]
- 50. Norredam M. and Album D., “Review Article: Prestige and Its Significance for Medical Specialties and Diseases,” Scandinavian Journal of Public Health 35, no. 6 (2007): 655–661. [DOI] [PubMed] [Google Scholar]
- 51. Album D. and Westin S., “Do Diseases Have a Prestige Hierarchy? A Survey Among Physicians and Medical Students,” Social Science & Medicine 66, no. 1 (2008): 182–188. [DOI] [PubMed] [Google Scholar]
- 52. Johannessen L. E. F., Album D., and Rasmussen E. B., “Do Nurses Rate Diseases According to Prestige? A Survey Study,” Journal of Advanced Nursing 76, no. 7 (2020): 1691–1697. [DOI] [PubMed] [Google Scholar]
- 53. Rasmussen I., Holden M. B., and Mariussen M. S., “Tapere og vinnere i den kommunale helse‐ og omsorgstjenesten Nsf.no: Vista Analyse,” 2022, https://www.nsf.no/rapport/tapere‐og‐vinnere‐i‐den‐kommunale‐helse‐og‐omsorgstjenesten‐vista‐analyse‐2022.
- 54. Album D., Johannessen L. E. F., and Rasmussen E. B., “Stability and Change in Disease Prestige: A Comparative Analysis of Three Surveys Spanning a Quarter of a Century,” Social Science & Medicine 180 (2017): 45–51. [DOI] [PubMed] [Google Scholar]
- 55. Pedersen R., Nortvedt P., Nordhaug M., et al., “In Quest of Justice? Clinical Prioritisation in Healthcare for the Aged,” Journal of Medical Ethics 34, no. 4 (2008): 230–235. [DOI] [PubMed] [Google Scholar]
- 56.“Norwegian Directorate of Health,” Government.no., https://www.regjeringen.no/en/dep/hod/organisation‐and‐management‐of‐the‐ministry‐of‐health‐and‐care‐services/etater‐og‐virksomheter‐under‐helse‐‐og‐omsorgsdepartementet/Subordinate‐institutions/the‐directorate‐for‐health‐and‐social‐af/id213297/.
- 57.“Veileder til forskrift om ledelse og kvalitetsforbedring i helse‐ og omsorgstjenesten [Guideline],” Helsedirektoratet, Lovdata.no, 2017, https://lovdata.no/static/ROO/is‐2017‐2620.pdf.
- 58. Zhou Y., Wang A., Ellis‐Smith C., Braybrook D., and Harding R., “Mechanisms and Contextual Influences on the Implementation of Advance Care Planning for Older People in Long‐Term Care Facilities: A Realist Review,” International Journal of Nursing Studies 133 (2022): 104277. [DOI] [PubMed] [Google Scholar]
- 59. Davies N., “How Do You Measure the Success of Advance Care Planning and What Should We Now Be Focusing On?,” Age and Ageing 52, no. 4 (2023). [DOI] [PubMed] [Google Scholar]
- 60. Flo E., Husebo B. S., Bruusgaard P., et al., “A Review of the Implementation and Research Strategies of Advance Care Planning in Nursing Homes,” BMC Geriatrics 16, no. 1 (2016): 24. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 61. Hart M., Stepita R., Berall A., Sokolowski M., Karuza J., and Katz P., “Development of an Advance Care Planning Policy Within an Evidenced‐Based Evaluation Framework,” American Journal of Hospice and Palliative Medicine 39, no. 12 (2022): 1389–1396. [DOI] [PubMed] [Google Scholar]
- 62. Knight K., “50 Years of Advance Care Planning: What Do We Call Success?,” Monash Bioethics Review 39, no. 1 (2021): 28–50. [DOI] [PubMed] [Google Scholar]
- 63. Lund S., Richardson A., and May C., “Barriers to Advance Care Planning at the End of Life: An Explanatory Systematic Review of Implementation Studies,” PLoS One 10, no. 2 (2015): e0116629‐e. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 64. Cerulus M., Bossuyt I., and Vanderhaeghen B., “An Integrative Literature Review of the Implementation of Advance Care Planning in Hospital Settings,” Journal of Clinical Nursing 30, no. 21/22 (2021): 3099–3110. [DOI] [PubMed] [Google Scholar]
- 65. Lipsitz L. A., “Understanding Health Care as a Complex System: The Foundation for Unintended Consequences,” Journal of the American Medical Association 308, no. 3 (2012): 243–244. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 66. Kalsi D., Ward J., Lee R., Fulford K., and Handa A., “Shared Decision‐Making Across the Specialties: Much Potential But Many Challenges,” Journal of Evaluation in Clinical Practice 25, no. 6 (2019): 1050–1054. [DOI] [PubMed] [Google Scholar]
- 67. Rietjens J. A. C., Sudore R. L., Connolly M., et al., “Definition and Recommendations for Advance Care Planning: An International Consensus Supported by the European Association for Palliative Care,” Lancet Oncology 18, no. 9 (2017): e543–e551. [DOI] [PubMed] [Google Scholar]
- 68. Nilsen P., Seing I., Ericsson C., Birken S. A., and Schildmeijer K., “Characteristics of Successful Changes in Health Care Organizations: An Interview Study With Physicians, Registered Nurses and Assistant Nurses,” BMC Health Services Research 20, no. 1 (2020): 147. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 69. Lohr K. N., “The Role of Research in Setting Priorities for Health Care,” Journal of Evaluation in Clinical Practice 2, no. 1 (1996): 79–82. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Additional file 1 COREQ Checklist version2.
Additionale file 2 interview guides.
Data Availability Statement
The research data that support the findings of this study are qualitative interview transcripts, which are not available due to privacy.
