Patient and caregiver characteristics

Saturation was met after 12 interviews, which includes 12 patients and 4 caregivers. Eighteen patients were approached to yield this sample size (response rate 67%). Median age was 72.5 years. Seven (58%) identified as male and 5 (42%) female; 5 (42%) identified as Non-Hispanic White (Table 1). All caregivers were female; two were daughters (50%), one (25%) sister, and one (25%) wife. Nine (75%) patients reported knowing their cancer type, and five (42%) knew the stage. Eight (67%) patients had a decisional conflict scale score > 37.5 (scored 0–100), which correlates with decision delay or uncertainty [11].

Table 1 Patient characteristicsPatient and caregiver: qualitative results

Table 2 illustrates the full thematic analysis. Themes are described below in narrative form below Table 2, with patient quotes indicated by “P” and caregiver quotes by “C.”

Table 2 Thematic analysis of semi-structured interviews with patients and their caregivers about information and decisional needsAnticipated cancer treatment decisions

Patients and caregivers reported that the most important anticipated cancer decision involved treatment: whether to receive treatment, treatment type, and how aggressively to treat cancer. Patients described experiencing decisional conflict due to insufficient information about the cancer, pending test results from hospitalization, and not understanding potential treatment effects.

[Anticipated decisions about the cancer] are what I gotta figure out. How can I know the future unless I know what the potential is?…I gotta know what it is before I can even think about it. (P2)

Variable control preferences in decision-making

Decision-making control preferences varied from self-, caregiver-, or provider-directed decisions. Most patients desired full autonomy, while some deferred decisions to their future oncologist. Two patients relied on family to make decisions due to impaired decision-making capacity from illness severity, including one patient recovering from emergent diverting colostomy surgery.

[Caregiver’s brother] and I have been making the decisions for her since she has been too sick to be able to. (C1)

High cancer-related information needs and uncertainty

After hospital discharge, patients and caregivers reported known and unknown information needs. Some expressed uncertainty and anxiety about their cancer care both during and after the hospitalization. One caregiver described their worries from not knowing the cancer type or treatment options during a prolonged hospitalization.

We stayed in the hospital for four or five days and nothing happened. Nobody told us what it was and nobody told us we were going to start treatment. We’re just sitting there worrying we’re going to die because we’re not going to get treatment. (C2)

Participants desired to learn about the nature of the cancer; treatment details about options, benefits, risks, and urgency; and symptom management. Prognostic information was also highly desired, such as anticipated disease course and curability. Sometimes, patients and caregivers struggled to understand why test results were delayed. One caregiver stated it would have been helpful to be informed of the reasons for the delay of biopsy results. Lastly, patients described a lack of understanding of the next steps in cancer care after discharge.

Barriers to information gathering during hospitalization

High information quantity and complexity, along with a lack of information due to pending or delayed test results, hindered patients’ ability to understand their cancer. The flow of information also posed a barrier. For instance, one patient who was transferred from another hospital was confused after receiving contradictory diagnoses from different hospitals about whether their cancer was small-cell or non-small-cell lung cancer. Patients also reported difficulty feeling informed due to the dynamic, rapidly collected nature of the information being gathered, synthesized, and presented to them in the hospital.

Everybody was still learning. … And they say we’ll just keep passing the information as it comes to us. … And each day was a little bit different. (P4)

There were also multiple inpatient providers delivering information, which made it difficult for patients to track and reconcile information from multiple sources.

Caregiver: When you had lots of different doctors visiting, did you know who all of them were and what they were asking you? Patient: Sort of. Some I might know; some I don't know. (C3 & P3)

Additionally, emotional distress from the cancer diagnosis and physical distress from cancer-related symptoms made it difficult for patients to absorb information in the hospital.

[In the hospital], I was just in a lot of pain and under a lot of medication and had difficulty learning some new skills as to how to navigate this new body. (P5)

Facilitators to information gathering during hospitalization

A number of factors helped patients gather cancer-related information in the hospital, including rapid communication of test results and availability of hospital providers to share information. Caregivers helped explain information, especially for patients whose illness compromised information processing.

Without our sister being able to explain all of the tests, I think it would have been a lot more difficult...Our sister is a doctor and is able to read her chart. She can relay that information, and that helped a lot. (C3)

The hospitalization itself, which expedited cancer diagnostic work-up, was also viewed as educational.

We understand sometimes it might be hard with the hospital since a lot of things are happening all at once. They’ve made it as easy as possible … [The hospitalization] was an education. (P11)

Barriers to information gathering post-hospitalization

Patients continued to face challenges in gathering and processing information after discharge but before seeing an outpatient oncologist. Some had difficulty integrating the tremendous amount of scattered data obtained during the hospitalization. Moreover, patients and caregivers faced delays in scheduling an appointment quickly with an outpatient oncologist, sometimes due to insurance coverage problems.

After getting discharged, the insurance was the confusing part to try to see how we could continue care at UCSF. (C3)

Facilitators to information gathering post-hospitalization

The primary means by which patients sought to obtain more information about cancer treatment after being discharged was by quickly meeting with an outpatient oncologist. Patients also sought information from other sources, such as the Internet, friends, and other physicians.

Decision-making facilitators

Multiple factors helped patients prepare to make cancer treatment decisions beyond the educational benefits of obtaining information. One patient said the hospitalization gave him a better sense of the cancer and future directions, which reduced his distress.

[The hospitalization] has taken some of the pressure and anxiety away. [I went] from not knowing to having some idea of where I am, where my body is, and what the possibilities and my future existence are. (P1)

For other patients, returning home to a more comfortable environment after being in the hospital helped them prepare for their anticipated cancer decisions.

Oncologists: quantitative results

Of 46 oncologists contacted, 32 (70%) with a median 6 years of clinical experience (range 1–40 years) completed the survey. When asked about their last patient with a newly diagnosed advanced cancer in the hospital seen in their clinic, 18 (56%) oncologists reported that patients were somewhat or very poorly informed about treatment options, greater than the 5 (16%) for cancer type (p < 0.001; Fig. 1). The proportion for cancer prognosis (n = 18, 56%) was also greater than cancer type (p < 0.001). There was no difference in the proportion of oncologists who reported patients were somewhat or very poorly informed about cancer type versus cancer stage (n = 11, 34%; p = 0.07).

Fig. 1

Oncologists’ perspectives on cancer-related knowledge of their most recent patient with advanced cancer newly diagnosed in the hospital. This bar graph illustrates how well-informed oncologists viewed their most recent patient with advanced cancer newly diagnosed in the hospital. From left to right, the domains of cancer information are cancer type, cancer stage, treatment options, and prognosis. On pairwise comparison to cancer type, more oncologists reported that patients were very or somewhat poorly informed about treatment options and prognosis compared to cancer type, but not about cancer stage versus cancer type

Oncologists: qualitative results

Open-ended survey responses, with oncologist quotations indicated below by “O,” revealed themes describing cancer-related information and setting expectations regarding patients’ cancer and care plan.

Variable expectations about patient knowledge after hospitalization

Prior to the initial oncology appointment, oncologists reported that patients should know their cancer type, stage, and treatment (general categories, types of systemic therapy, toxicities, and curative versus palliative intent). Some reported that prognosis, such as likelihood of cure and longevity, should be disclosed early to facilitate information consolidation and outpatient consultation. Techniques to disclose prognostic information were described, such as best case-worst case framing and giving “broad strokes” ranges of survival.

It is super helpful for patients to know high level “maybe curable” or “probably not curable” so that they are emotionally prepared to listen and ask the right questions. If they hear this for the first time at clinic visit, there is often a “deer in the headlights” effect that interferes with productive consultation. (O5)

Other oncologists did not expect patients to know much about the cancer.

I’m okay with my patients having a very blank slate that I can fill in. (O6).

One oncologist believed treatment or prognostic information in the hospital is not helpful because it is frequently incorrect.

I don’t think treatment or prognosis information is helpful as the information they receive in the hospital is frequently inaccurate for their specific cancer subtype. (O3)

Facilitators to patient decision-making

Many oncologists wrote that inpatient oncology education is crucial in promoting SDM in the clinic, as repetition helps patients absorb and consolidate important information.

Patients often need to hear this information multiple times—it is so overwhelming at first, particularly if they are hearing it while unwell in the hospital. If they can come away knowing their diagnosis, that it is metastatic and what this means, and that there are treatment options, I think this is helpful. (O11)

Oncologists also recommended that inpatient providers highlight key cancer information in patients’ discharge instructions, such as cancer type, stage, and prognosis, provide reputable sources of online information (and what is unreliable), explain the roles of academic and community cancer centers regarding clinical trials and treatment location; describe the different roles of the multidisciplinary cancer care team, advise on the nature of the initial outpatient oncology visit, and suggest they bring in a trusted family member for support to oncology appointments.

Would be ideal to have [cancer type, stage, and rough prognosis] written down for them in discharge paperwork because patients often forget when they see doctors early AM/late PM/without family around/right after procedural sedation/etc. (O5)

To help outpatient oncologists communicate with these patients, they recommended inpatient providers document what information was or was not discussed with patients in the hospital, or give a handoff that includes pertinent inpatient data, such as inpatient care received, what information was given to the patient, and pending test results. Lastly, systemic changes to facilitate timely establishment of outpatient care were mentioned.

Patient uncertainty before outpatient oncologist appointment

Oncologists also acknowledged the significant uncertainty patients face while waiting for their outpatient oncology appointment following hospital discharge.