Throughout the analysis, different features of uncertainty were evident in most aspects of clinical decision-making. Already during the first phase of analysis, when reading transcripts alongside with the field notes, we reflected over uncertainties as an aspect that seemed to impact clinical decision-making. At the final stages of the analysis, the overarching theme became clear, with uncertainties described in all main themes. This overarching theme is linked with all main and sub-themes. This was confirmed during the analytic process by the two authors not present during the FGI’s.

Across the FGIs, uncertainties were reported regarding organizational factors; an inconsistency between organizations (access to care, resources, and competencies), were described to largely impact clinical decisions, i.e., how to act, plan for care activities and interact with patients and their families. In addition, uncertainty of who should make and/or initiate important decisions, are portrayed in a theme, Organizational factors impacting clinical decision-making. Other examples of uncertainty related to the patient’s prognostic understanding or the patients living situation also seemed to influence clinical decisions and were reported in, Patients and informal caregivers’ prerequisites. In addition, aspects of uncertainty were apparent in a theme related to goals-of-care as well as an uncertainty of the patients’ prognosis, Balancing patient’s medical condition and needs based on the uncertainty of the future. These aspects of uncertainty appeared to hinder and impact the clinical decisions, leading to ethical conflicts, presented in the theme, Balancing ethical dilemmas.

Organizational factors seemed to impact clinical decisions, several related to different aspects of resources, covered in the sub-theme, Resources, geography and timing. Participants from both SPC and acute cancer care described how their resources affected their decisions, e.g., the ratio of nurses/physicians per patient, or whether a physician was on call during weekends or not. As an example, geography seemed to impact clinical decision-making; if a patient lived remotely on an island difficult to access, they were more likely to send the patient to the ER, or at least to the hospital, since frequent visits were hindered by location and travel time. It was also discussed by several SPC teams how the workload (number of patients in need of multiple home visits) impacted decisions on whether to send a patient to ER or not (rather than the medical and/or psychosocial condition).

“It’s Friday evening and then you cannot expect an assessment by a physician until Monday really, the threshold for sending the patient in is lower, since this is the only way of getting an appropriate assessment.”

(FG2, MD2)

The health care professionals (HCPs) discussed healthcare inequalities and the heterogeneity of resources in the sub-theme, Uncertainty of the organization. For example, HCPs in one of the acute care hospitals were reported to have access to a specialized cancer ER, meaning that the patients did not have to go to the general ER, where often other acute conditions are prioritized. In addition, heterogeneity in access to SPC inpatient beds also appeared to impact these decisions. In one sub-theme, the reasoning centered on the heterogeneity of competence within/between SPC teams (creating uncertainty about what to expect); Access to competent care by competent staff.

“I think we all know that the care is very different between SPC teams. Some does all (assessments, antibiotics) and care for them until they are dying, while others always send in the patients.”

(FG5, MD2)

Another finding related to this sub-theme was the resources from either informal caregivers and/or professional care (personal hygiene, feeding), this type of support being separately organized by the municipalities. The SPC teams discussed the difficulties of organizing this important support from the municipalities, especially if urgent, as the process was time-consuming. The HCPs described the challenges involved in coordinating care activities between SPC at home and non-medical support at home.

The negative consequences of sending palliative patients to the acute hospital were highlighted by the acute care teams. One organizational factor described was the routine that if a patient were admitted to the acute care hospital for more than 72 h, a new referral to SPC was needed. The new referral, hindering continuity of care and risking unnecessary acute care, is described in, System and policy.

“..This happens all the time- Friday night, because you are perhaps new- it feels stressful when someone cannot breathe properly. You know it may be a pulmonary embolus and there will be a CT (computer tomography). The patient will be admitted and stay over the weekend. Then they lost their place at SPC at home. And then it will be hard to discharge the patient to home.”

(FG5, MD1)

The health care professionals from both settings, described how they felt restrained in clinical decisions due to how the health care system and how economical incitements impacted. This was expressed several times with frustration, i.e., the pressure of fulfilling the policy to occupy all beds in the palliative inpatient ward (leaving no room for an urgent admission from home and/or hindering continuity of care) and fragmented care consequently.

“It is frustrating to keep the budget, our ward needs to be fully occupied all the time and when that happens, the patient´s supposed to “choose” another SPC provider. It does matter, it matters a lot. In this case, the patient might end up at a palliative ward somewhere else, making it more difficult for the patients’ family to visit.”

(FG3, RN3)

Among participants from both settings and professions, it seemed to be unclear who had the overarching responsibilities for a patients’ care. In the sub-theme, Uncertainty of mandate and goals-of-care, this was discussed in various ways, for instance when a patient recently had completed cancer treatment and had a follow-up acute cancer care appointment scheduled but also ongoing SPC at home.

“She is (the patient) still in the care of the oncology clinic even if she doesn´t have active treatment, she still has an appointment there. Here we need to be clear, a clearer decision, SPC is responsible, but the oncology clinic is responsible in one way.”

(FG3, RN3)

All participants agreed on shared responsibility in principle, but different views and uncertainty on what this exactly meant were apparent. Responsibility for cancer treatment and symptom management seems to be the theoretical threshold, but in practice, this seems confusing as treatment and symptom management need to be interlinked in person-centered care. The perceived silos of acute versus palliative care appeared to impact a timely EOL conversation (one team waiting for the other to initiate EOL conversations and planning).

“They, the oncology clinic should have the difficult conversation. We should not do it for them.”

(FG4, RN2)

The apparent lack of clear individual goals of care and thereby the purpose of treatment seems to add to the uncertainty. Another barrier to initiating an EOL conversation was described to be associated with the availability of new treatments and if there was a temporary pause in treatment. This was described by the participants, especially by the SPC teams.

“during recent years, (...) one doesn’t dare to say no. We are rather thinking, we have a new treatment that possibly could help.”

(FG2, MD1)

The lack of systematic collaboration between the teams was described as a hinder negatively impacting much needed clinical decisions. Participants from both settings expressed that the other care team needed to improve their clinical decision-making and communicate these decisions better.

“Well, now there´s treatment much longer and tougher. Into the last days. I feel the decision is never made, but perhaps close. The difficult conversation doesn’t happen, it is postponed. And then the patient deteriorates and end up like this (admitted to an acute care hospital at EOL).”

(FG4, RN2)

The SPC participants indicated that a consequence of the poor collaboration between the teams were inadequate clinical decision-making with fragmented care and unnecessary acute admissions. Similar consequences were described by the acute care teams.

“We are spending time ordering scans and tests, but for this kind of patients it is not just a hospitalization, it is a long journey, hours on a stretcher having bone metastasis and pain. It is so much more. We need to have an adequate plan here.”

(FG5, MD1)