Shared decision‐making in standardized cancer patient pathways in Norway—Narratives of patient experiences

Abstract Background Cancer patient pathways (CPPs) were implemented in Norway in 2015–2017 to advance cancer diagnostics and treatment initiation. The aim of CPPs is to ensure standardized waiting times, but also to strengthen patient participation and shared decision‐making. This study investigates how patients enrolled in a CPP experienced shared decision‐making. Methods This study comprised of 19 individual semistructured interviews with patients who had been enrolled in a CPP at three hospitals in Norway. Twelve patients had breast cancer, four patients had prostate cancer and three patients had malignant melanoma. We analyzed their experiences using a narrative approach. Findings This study showed how participating in a standardized CPP provided different possibilities for shared decision‐making. The patients' narratives of shared decision‐making in CPPs included stories from the three cancer diagnoses through the following themes: (1) The predictable safeness of standardizations, (2) the ambivalence of making decisions and (3) opposing standardizations and pushing for action. Conclusion Standardized CPPs provided patients with predictability and safety. Shared decision‐making was possible when the cancer diagnoses supported preference‐sensitive treatment options. Balancing standardizations with individualized care is necessary to facilitate patient participation in CPPs, and the possibility of shared decision‐making needs to be discussed for each specific CPP. Patient or Public Contribution A service user representative from the Norwegian Cancer Society participated in designing this study.


| INTRODUCTION
Standardized cancer patient pathways (CPPs) have been implemented country by country in Scandinavia, beginning with Denmark in 2007. 1 CPP initiation was based on an unwanted variance in cancer treatment, especially in terms of waiting times and treatment options across hospitals. In Norway, CPPs were launched in 2015. 2 Their purpose is to ensure that cancer patients experience a wellorganized, comprehensive and predictable trajectory without unnecessary non-medically justified delays in assessment, diagnostics and treatment, including a strong emphasis on patient participation.
A CPP is typically initiated by a general practitioner (GP), who, upon reasonable cancer suspicion, sends a referral to the hospital for further investigation by the specialist health service. The CPP commences when the specialist health service receives the referral, after which the health service should respond within the time frame defined for each phase in each CPP. As an example, in one of the 28 CPPs that have been implemented in Norway, the breast cancer pathway is divided into three phases. It comprises 14 days for the first two phases. These phases include the periods from receipt of referral by the hospital until the first appointment for procedures and tests in the pathway and from the first appointment for procedures and tests until the assessment is completed. The third phase is the period from being diagnosed as having cancer until the start of treatment, which should comprise no more than 13 days. 3 Standardization of CPPs is meant to ensure predictability, accountability and objectivity for patients and health services 1 and is an important part of modern healthcare. 4 Standardization does, however, carry a risk of dehumanization if patients are seen as objects that should fit into a standard. 5 Over the last few decennials, health services have been subject to democratization processes meant to counteract objectivation of patients through the initiation of patient participation, which is included as a policy aim for the Norwegian CPPs. 2 Policy documents on CPPs state that patients and next of kin should receive individually customized information, be involved and participate in dialogue and that decisions should be made jointly between patients and physicians. 6 The focus on patient participation in the Norwegian CPPs could, however, create a para- Patient participation is advocated as an important part of modern medicine, including cancer care. 7,8 Shared decision-making is one of several approaches to achieving patient participation and is especially suitable when more than one treatment option exists and the options are considered equal with regard to outcome. 9 Shared decision-making is a process in which healthcare professionals and patients work together to make decisions about treatment and management based on clinical evidence and patient preferences. 9 In shared decision-making, the healthcare professional informs the patient, explains the pros and cons of each option, discusses the patient's preferences with the patient, including how the patient prefers to make decisions and finally makes or defers a decision. 10 Sharing the decision could also be relevant for decisions related to logistics or other practical issues. 8 Thus, the nature of decisionmaking in the different encounters will vary according to the purpose of each encounter.
A cancer diagnosis confronts patients profoundly with their mortality, 8 and insecurity and vulnerability may follow. 11 Healthcare professionals could underestimate patients' ambivalence and reduced decision-making capacity when faced with the unfamiliar field of medicine. 11 The degree to which patients prefer to participate in decision-making about treatments varies between types of cancers and the characteristics of the patients, 12 but most patients prefer an active role in decision-making. 8,13 However, patients are found to be more confident about making decisions that do not require medical knowledge and often prefer their physicians to provide a treatment direction or recommendation. 9,14,15 Some clinicians are reluctant or ambivalent when recommending a preference-sensitive treatment, out of respect for patient autonomy. 15,16 Patients' need to participate may differ across the cancer trajectory, and patients often become more confident in decision-making as their trajectory unfolds. 8 Paradoxically, key decisions are made in the initial stages, when relationships are new and emotionality is intense. 8 Although widely advocated, shared decision-making exists in varying degrees in clinical practice. Barriers are related to patients and healthcare professionals as well as the healthcare organization. 16,17 According to traditional healthcare practice, clinicians are, by the nature of their profession, expected to make decisions, and patients are expected to follow medical recommendations. 18 Patients may feel reluctant or anxious about sharing decisions 16 and depend on professional expertise to restore their health. 11 This may lead them to apply a 'doctor knows best' attitude and defer from participating. 16,19 Avoiding disagreement with medical recommendations may be a way for patients to ensure a healthy relationship with care providers. 19,20 Previous research suggests deficiencies in shared decisionmaking in cancer care. For instance, a Danish study found that breast cancer patients had unmet needs related to information, communication and involvement in treatment choices, even when the CPP was experienced in a fast and well-organized manner. 21 A German study found that even though shared decision-making lacked implementation in German breast care centres, nurse-led decision coaching based on evidence-based information increased shared decision-making. 22 Similar issues exist for prostate cancer, where a study analyzing educational material concluded that the material was overly complex and not readable for laypeople. 23 When deciding on treatment options, not all prostate cancer patients were offered a ANDERSEN-HOLLEKIM ET AL.
| 1781 choice by their clinicians. 7 Another study found that treatment decisions were considered to be part of the physician's role as both healthcare professionals and patients doubted the latter's abilities to participate in decisions. 24 Therefore, treatment information was emphasized and amounted to patient involvement. 24 Studies on shared decision-making for malignant melanoma trajectories are scarce, although it has been found that most melanoma patients prefer an active role and that implementing a shared decision-making approach in clinics increased patient involvement. 25 With the implementation of standardized patient pathways in cancer care across countries, more knowledge is needed about how patients experience shared decision-making in a standardized CPP.

| Aim of this study
The aim of this study was to explore the experience of patients who had undergone standardized CPPs, specifically their involvement in shared decision-making through their CPP.

| Design
This was a retrospective, qualitative interview study with individuals who had been patients in a standardized CPP in Norway. The study was part of a larger research project on CPPs in Norway. CPPs that represented both common and rarer forms of cancer were included.
Although the main project also included lung cancer, this study omitted this CPP due to ethical reflections on lung cancer patients' potentially poor health at the end of the CPP. The present study thus included three diagnostic groups: breast cancer, prostate cancer and malignant melanoma. This selection allowed exploration of variations in patient experiences due to the different characteristics of these cancers and CPPs.

| Setting
Norwegian healthcare services are built on universal health insurance. There are four regional health trusts in Norway, including both local and university hospitals, which attend to patients in need of specialized health services such as cancer surgery. Cancer patients who are initially examined at a local hospital are most often transferred to the university hospital for specialized examinations and treatment. However, chemotherapy could be administered by a local hospital. Preoperative assessments, comorbidity and communication with each patient form the basis for individualized trajectories. Patients are primarily treated within the geographical region where they live, but the right to choose between hospitals is regulated by law. 6 Cancer patients receive individually adapted evidence-based treatment. For women with breast cancer, the choice of treatment includes breast-conserving surgery or mastectomy, chemotherapy and/or radiation therapy. 6 Depending on the stage of cancer, treatment options for men with prostate cancer include active monitoring, curative treatment, such as radical prostatectomy or radiation therapy with or without endocrine treatment and symptom-oriented treatment, possibly including endocrine and/or palliative care. 6 In patients with malignant melanoma, treatment relates to primary or extended excision, lymph node dissection, surgical metastasis removal and/or oncological treatment. 6

| Recruitment and sample
The participants were recruited through three university hospitals within three of the four regional health trusts in Norway, respectively, in the northern, central and southern parts of the country. Breast cancer patients received information about the study from a nurse during an appointment at the clinic, as did prostate cancer patients at the central hospital. All patients with malignant melanoma and men with prostate cancer at the southern hospital received study information by ordinary mail and had to phone a researcher to be included in the study. One participant self-recruited after hearing about the study in an informal setting.
A total of 19 participants took part in the project. Five were men, four of whom had prostate cancer and one had malignant melanoma.
Two women had malignant melanoma, whereas 12 had breast cancer (

| Data collection
Individual interviews were conducted by three researchers who all had substantial experience with qualitative interviewing. Seven interviews were performed by phone due to long travel distances, while the remaining 12 interviews were conducted face to face. One patient was interviewed at home, one in a meeting room in a public building near the patient's home and the remaining 10 interviews were carried out in a meeting room either at the university or at the hospital. The phone interviews lasted from 20 to 64 min (mean 34), whereas face-to-face interviews lasted from 31 to 75 min (mean 49).
We used a semistructured interview guide, which was developed by

| Data analysis
Although the interviews were based on a semistructured interview guide, participants were eager to tell their cancer stories, including Have you heard about CPP?
Beginning the cancer patient pathway (CPP) Please tell us about how you got your cancer diagnosis.
-Who was your first contact?
-How did the GP meet you?
What information about CPP did you receive at the GP?
-Did you search for information on CPP?
Waiting time between first contact with general practitioner (GP) and start of treatment How did you experience the time between your first contact with the GP and your first contact with the hospital?
What information did you receive about your future examinations and treatment?
At the hospital Who was your contact at the hospital, and how did they meet you?
What information about CPP did you receive from the hospital?
Have you experienced being in a CPP?
How did you experience the time frame from your first encounter with the GP until your treatment start-up?
Information through the CPP Have you been informed about the procedures during your cancer patient pathway?
Did you miss any information?
Patient participation What decisions were made at the GP's?
-Who made these decisions?
How did you participate in decision-making during your cancer pathway?
-Did you have sufficient information to take part in decision-making?
Did you experience decision-making in which you did not take part?
-How would you have preferred to participate in decision-making?
Have you ever wanted to take part in decision-making without being heard?
| 1783 stories about CPP and decision-making. This provided thick data on each step of the CPP and subsequently led us to choose a narrative approach to the analyses. A narrative analysis reflects an individual's told experience of an event, related as a story with a beginning, a middle and an end, with causal incidents organized in a plot. 26 To analyze the data, all authors read some of the interviews and contributed to discussions on what were the main themes within the stories throughout the analytical process. Tone Andersen-Hollekim and Marit Solbjør read all the transcribed interviews several times and conducted the coding of each interview. The first reading allowed an overall impression of the text. In the following reading, we identified codes by choosing words or short phrases in the text. 27 Codes with similar meanings were grouped together, which enabled us to observe patterns in the material. We then organized the codes into categories according to these patterns. In accordance with a narrative approach, 26 we searched for similarities and contradictions, turning points or shifts in the patient stories. The analysis was conducted using an iterative process, in which we continuously rechecked the developing themes with the transcripts.

| Ethics
The study was approved by the Norwegian Centre for Research Data. All study participants provided written informed consent.
Participation was voluntary and all patients invited to the study were informed that their treatment or health services would not be influenced by their participation or nonparticipation in this study.

| The predictable safeness of standardizations
Women diagnosed with breast cancer described two routes into the CPP. Some experienced detecting a lump in their breast, after which they contacted their GP and were referred to specialist healthcare.
Others had taken part in a mammography screening programme, The standardized pathway helped women to solve questions of uncertainty that arose in the initial phase of the cancer diagnosis. As one of them stated, 'It feels like someone has figured out a clever way to do this, and it is thus reasonable for me to follow this way' (Participant 2). Trust in the health system and in professional competence pervaded their stories, allowing them to take a passive position in decision-making through actively leaning on professional competence. Through their stories, the women imagined their tumour as an alien element that had invaded their bodies and disrupted their normal lives. This narrative analogy became part of how these women interpreted the standardization of the CPP. The standardization was seen to ensure choosing the best option to increase survival.
However, seeing the tumour as an alien element also led some women to become reluctant to undergo breast-conserving surgery, believing that a total mastectomy would be the safest option. One  Taking on a responsible role, some of these men felt guilty about not being active enough, for instance, if postponing phone calls to request examinations. These stories showed how the men aimed to take control, but also how they potentially blamed themselves if they failed to control the situation.

| Opposing standardizations and pushing for action
When presented with treatment options, some men found that these options were limited due to advanced cancer disease. For instance, one of them had been diagnosed with an inoperable tumour and was offered radiation and hormone therapy instead of surgery.
Others were provided suggestions of active monitoring or immediate radical treatment. Faced with these choices, the men expressed discomfort with monitoring and preferred radical surgery over ra- Previous research suggests that patients may prefer a more passive role in the initial stages of the CPP, but that their confidence in decision-making often increases as their trajectory unfolds. 8 When faced with preference-sensitive treatment choices, patients in the present study sought medical recommendations and clear advice from healthcare professionals. Making decisions involves the potential of making the wrong decisions, which could be an additional stressor to individuals who are facing an existential crisis. 30 As patients depend on healthcare professionals to restore their health, 11 they may apply a 'doctor knows best' attitude and defer from participating to ensure good relationships with healthcare professionals.
Some patients prefer professionals to make decisions, even those that are preference-sensitive. 31 Patient participation could include the patient remaining passive in certain contexts. 13  In the present study, the predictability of the CPPs was appreciated by the patients. However, there are shortcomings in standardizations that do not respond to individual needs or wishes.
Standardization could benefit the health service organization without being beneficial to patients. 5 Our findings suggest that choice is encouraged when it is within the standardized system, but not when patients have preferences beyond standard solutions. As one of the policy goals of CPPs is to ensure patient participation and shared decision-making, health services need to consider whether patient participation should be implemented within the CPP or if each patient should fit into a standardized logistics. It is important that standardization is used as a tool for designing good services, not as an aim for the service.