Oncologic outpatient specialty palliative care referral uptake: a single institution quality improvement project

Introduction

Patients with advanced or recurrent cancer often contend with physical and psychological symptoms, impeded social role functioning, and spiritual and/or existential distress that negatively impact quality of life (1). Specialty palliative care, delivered by clinicians with advanced training in serious illness management and communication (1-3), helps patients through complex symptom management, psychosocial support, and exploration of goals and values (4). Specialty palliative care is defined as a medical specialty that focuses on complex symptom management to improve quality of life for patients with serious illnesses and their families (5). Multiple randomized control trials have demonstrated that specialty palliative care significantly improves patients’ quality of life and symptom burden, enhances patient and caregiver satisfaction, and even increases survival (1,4,6-12). Timely integration of specialty palliative care maximizes its clinical benefit (7,13-18). Recent national guidelines [e.g., National Comprehensive Cancer Network (NCCN), American Society of Clinical Oncology (ASCO), and the World Health Organization (WHO)] recommend shifting specialty palliative care referral both earlier in the cancer disease and in favor of outpatient rather than inpatient first-time specialty palliative care consultations (19-21).

While multiple studies recommend early referrals (7,13-15), defining timely specialty palliative care integration remains an area of ongoing study (9,13). Specialty palliative care referrals placed too late in the disease course deprive patients of many of its benefits; however, premature referrals may go unused by patients without palliative care needs and potentially overwhelm palliative care delivery systems (9). ASCO recommends that late-stage or recurrent disease patients with a prognosis of 6–24 months receive outpatient specialty palliative care within eight weeks of diagnosis (10,22), and WHO recommends early involvement of supportive or palliative care beginning at the time of cancer diagnosis (21). Despite the established benefits of early referrals, many patients experience a significant delay in this process or never receive a referral (6). Prior studies suggest only 30% of eligible patients are referred to outpatient palliative care (14,22). Even if patients are referred, delays in referral placement or uptake can have negative consequences on the patient’s wellbeing, including increased hospitalizations, worsening symptoms, delay in goals-of-care conversations, and low involvement of hospice services at the end of life (23). There have been initiatives to improve outpatient palliative care referrals, from increasing buy-in (4) to creating consistent referral criteria (9). However, little is known about existing referral patterns to direct quality improvement initiatives. Existing studies in this area tend to be investigated within a single specialty, which limits the ability to draw meaningful comparisons between specialties, as well as how to choose between existing outpatient palliative care delivery models for optimization of care in a broad range of fields (14,24-26).

Ratnaparkhi and Spoozak (22) defined necessary and sufficient steps for completion of outpatient specialty palliative care referral including patient, clinician, and system related factors. Given compelling existing data regarding the benefits of early uptake of palliative care as well as consequences of delayed or declined referrals from other institutions, we preemptively aimed to characterize outpatient palliative care referral sources, timeliness, and completion rates across our cancer center at The University of Kansas Medical Center as a baseline needs assessment to assess whether any referral timeliness issues were present. We hypothesized that there would be differences between oncologic specialties regarding number of patients referred and timeliness of referrals. This quality improvement exercise can serve as a model for interdisciplinary quality improvement work regarding outpatient palliative care at other cancer centers. We present this article in accordance with the STROBE reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-25-39/rc).

Methods

We conducted a single institution retrospective cohort quality improvement study evaluating outpatient specialty palliative care referrals placed between January 2019 and December 2022. Cohorts included all patients referred to outpatient specialty palliative care from the seven oncology subspecialties with the highest volume of referrals at our institution: gynecologic cancer (GYN), breast, genitourinary cancer (GU), head and neck cancer (ENT), hepatobiliary and pancreatic cancer (HPB), gastrointestinal and colorectal cancer (GI + CRC), and lung. GI + CRC and HPB were combined for some analyses given high degree of provider overlap for these patients. This study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was exempted from full review by the Institutional Review Board (IRB) of the University of Kansas Medical Center (Institutional Organization #IORG0000100) due to designation as a retrospective quality improvement study. Due to this exemption, informed consent was waved for this study.

Data were exported from an institutional referral database that is manually maintained by the Division of Palliative Care. Study data were collected and managed using REDCap (Research Electronic Data Capture) hosted by The University of Kansas Medical Center (27,28). REDCap is a secure, web-based software platform designed to support data capture for research studies, providing (I) an intuitive interface for validated data capture; (II) audit trails for tracking data manipulation and export procedures; (III) automated export procedures for seamless data downloads to common statistical packages; and (IV) procedures for data integration and interoperability with external sources. Demographic data abstracted included age at time of outpatient specialty palliative care referral and primary cancer site (meaning the organ site from which the cancer originated, e.g., uterine, lung, etc.). The source of outpatient specialty palliative care referral (meaning the referring provider specialty), was determined from among surgical oncology, medical oncology, radiation oncology, inpatient palliative care team at hospital discharge, and other (primary care, non-oncologic subspecialist, patient/family, unknown).

We selected primary outcomes to evaluate outpatient specialty palliative care and hospice referral uptake. We investigated the source of all referrals and determined the relative percentages of referrals made by medical oncology, surgical oncology, radiation oncology, at time of hospital discharge, or by another source. We then determined the number and percentage of patients referred to outpatient specialty palliative care who completed an appointment with a specialty palliative care provider and analyzed the referral uptake rate by specialty. Reasons patients referred to outpatient specialty palliative care ultimately did not see a palliative care provider were documented and tallied. We also ascertained the percentage of patients who died during the study period who were enrolled in hospice at the time of their death. Secondary outcomes gauged the timeliness of outpatient specialty palliative care and hospice utilization. We calculated intervals between outpatient specialty palliative care referral placement and first outpatient specialty palliative care visit and hospice enrollment and/or death and interval between hospice enrollment and death as applicable.

Statistical analysis

We performed descriptive statistics and determined median and interquartile range (IQR) for continuous variables including age and specialty palliative care timeliness metrics and assessed differences between oncologic subspecialty cohorts using one-way analysis of variance (ANOVA) technique. We determined frequencies and percentages for categorical values and compared differences between oncologic subspecialty cohorts using Chi-squared tests. All statistical analyses were performed using Statistical Analysis System (SAS) Version 9.4 (SAS Institute, Inc., Cary, NC, USA) with P value alpha set at 0.05 for statistical significance. Data with missing values were omitted from analyses. Sources of bias for the study included the fact that we were only able to assess patients who already had a referral to outpatient palliative care placed and so were unable to analyze any areas of breakdown for patients with ongoing symptoms who do not receive a referral. It is important to note that each subspecialty has a different model of providing cancer treatment care, some with surgical oncologists referring to medical oncology for chemotherapy (such as CRC), and others providing both surgical treatment as well as chemotherapy (such as GYN).

Results

A total of 1,674 outpatient specialty palliative care referrals were placed at our institution between January 2019 and December 2022. Table 1 summarizes demographic characteristics. The number of referrals per specialty reflects the prevalence and natural history of each cancer type—204 (12%) were referred from breast, 377 (23%) from GI + CRC, 181 (11%) from GU, 176 (11%) from GYN, 187 (11%) from ENT, 295 (18%) from HPB, and 254 (15%) from lung. The median age at time of referral was 65 (IQR, 57–73 years). Medical oncologists initiated 57% of outpatient specialty palliative care referrals, inpatient palliative care consulting service at hospital discharge initiated 21%, and surgical oncology initiated 14% (Figure 1). The predominant referral source varied by oncologic subspecialty; GYN and ENT both had most referrals placed by surgical oncologists, whereas most referrals in the other specialties came from medical oncologists.

Figure 1 Referral source. Other: primary care, non-oncologic subspecialist, patient/family, unknown. ENT, head and neck cancer; GI + CRC, gastrointestinal and colorectal cancer; GU, genitourinary cancer; GYN, gynecologic cancer; HPB, hepatobiliary and pancreatic cancer.

Of the patients referred to specialty palliative care, 1,221 (73%) completed an outpatient visit with a palliative care provider (Figure 2). The rate of referral non-completion varied from 18% in breast to 35% in ENT; there was a significant difference between the groups (P=0.002) (Figure 2). Most patients who saw a palliative care provider continued to see specialty palliative care on an ongoing basis unless they discharged due to hospice transition or death; fewer than 3% of patients discharged from palliative care prior to hospice or experienced loss-to-follow-up, indicating most patients had palliative care needs (Figure 2, Table S1). The top three reasons that patients were never seen by outpatient specialty care included immediate hospice transition (42%), patient choice (41%), and death (8%) (Figure 2). Overall, 902 (54%) of patients died during the study period ranging from 67 (23%) in ENT and 409 (61%) in GI + CRC + HPB. Of the 902 total patients with a reported date of death, 85% were enrolled in hospice at the time of their death. Rate of hospice enrollment at death varied from 76% in ENT to 90% in GYN; there was a statistically significant difference among specialties (P=0.003) (Table 1).

Figure 2 Patients seen and not seen by specialty. ENT, head and neck cancer; GI + CRC, gastrointestinal and colorectal cancer; GU, genitourinary cancer; GYN, gynecologic cancer; HPB, hepatobiliary and pancreatic cancer; PC, palliative care.

Table 2 demonstrates metrics for timeliness of outpatient specialty palliative care appointments and hospice enrollment. Median time from outpatient specialty palliative care referral to appointment with a palliative care provider was 20 days (IQR, 9–30 days). There was a significant difference by specialty (P=0.04). GI + CRC + HPB cancer patients had the soonest appointments with a median time of 19 days, and head and neck cancer patients had the longest interval from referral to visit at a median time of 23 days. Median time from palliative care referral to hospice enrollment was 66 days (IQR, 22–164 days). There was a significant difference by specialty (P=0.002). GYN patients had the longest interval prior to hospice transition with a median of 113 days and GI + CRC + HPB patients had the shortest median interval of 53 days. Median time from hospice enrollment to death was 13 days (IQR, 5–31 days); there was not a significant difference by specialty (P=0.12). Median time from palliative care referral to death was 92 days (IQR, 40–205 days). There was a significant difference by specialty (P<0.001). GI + CRC + HPB patients had the shortest median time to death at 75 days, while GYN patients had the longest median time to death at 152 days.

Discussion

Our study demonstrated the utility of a real-world single-institution retrospective cohort quality improvement study to characterize strengths and weaknesses of existing referral pathways to outpatient specialty palliative care for oncology patients. Strengths at our institution included 75% of patients seeing a palliative care provider within 30 days of referral and 85% of patients enrolled in hospice at the time of death. We also identified several areas for improvement, including increasing referrals to outpatient specialty palliative care by surgical oncologists, shifting referrals to earlier in the disease course, and communicating the appropriateness of palliative care involvement for all patients with serious illness. Results of institutional quality improvement studies can be mapped against an established process map (22) in order to conduct a root cause analysis of suboptimal utilization of palliative care (Figure 3). This exercise can help identify interventions for improvement that are best tailored to the specific local context and deficiencies. As next steps at our institution, we plan to evaluate opportunities to support surgical oncologists and patients/families in communicating about the role of specialty palliative care to support primary oncologic care and to facilitate the use of standardized referral criteria in the course of routine clinical care.

Figure 3 Fishbone process flow diagram.

Referral sources

Though medical and surgical oncologists have good awareness of guidelines from oncologic societies and accreditation bodies for cancer centers (19,20,29,30), both medical (31,32) and surgical (32-40) oncologists continue to identify perceived barriers to specialty palliative care referral despite growing evidence of benefit from large randomized controlled trials. There are similarities and differences in the barriers to referral and how they are conceptualized from the different oncologic perspectives. Both medical and surgical oncologists identify the strength of the oncologist-patient relationship, patients’ and support persons’ perceptions of the role of palliative care, and palliative care’s unique perspectives on the plan of care as strong drivers that can challenge or encourage consideration of specialty palliative care involvement (31,33,36). Similarly, both groups cite inadequate training in communication techniques and prognostication to feel empowered in recommending specialty palliative care to patients (6,9,14,39).

Shared perspectives aside, surgical services still tend to utilize specialty palliative care less than medical services (41,42). This may relate to surgeons and surgical oncologists viewing the role of palliative care as being for end-of-life care and advance care planning rather than complex symptom management (42,43). A study by Suwanabol et al. identified specific themes of surgeons’ perceived barriers to palliative care: (I) surgeon knowledge and training; (II) communication challenges; (III) difficulty with prognostication; (IV) patient and family factors; and (V) systemic issues, with surgeon factors being self-identified as the most impactful barriers to patients receiving palliative care (39). These findings suggest that education about the benefits of specialty palliative care alone is inadequate as a standalone intervention to increase specialty palliative care referral. Communication skills trainings to increase self-efficacy (44,45), integrating palliative care within surgical oncology clinics (46), or even rebranding specialty palliative care as “supportive care” (4) may be more effective interventions to support lasting change. Greater collaboration between surgical oncology and palliative care divisions as well as greater support hospice and palliative medicine training in conjunction with surgical training are also critical (47). At our institution, we have worked toward addressing these barriers in a variety of both formal and informal ways. Formal methods include the implementation of VitalTalk difficult conversations trainings provided for both gynecologic oncology fellows and palliative care fellows (48), combined didactics for gynecologic oncology and palliative care fellows, regular quality improvement meetings regarding the implementation of palliative care services with our surgical patients, and providing both required rotations in palliative care for gynecologic oncology fellows as well as elective rotations for residents. Informal methods include opportunities to participate in role-playing difficult conversations, paired with progressive autonomy for residents, encouraging them to have difficult conversations with patients. Residents and fellows are given the opportunity to debrief about such conversations in a safe space with other team members providing constructive feedback. The combination of formal and informal methods allows both residents and fellows to feel confident and empowered to have discussions with patients that are in line with the scope of palliative care, as well as engage with palliative care colleagues in learning about complex symptom management for patients with serious illnesses.

Failed recognition of need for specialty palliative care referral is more common in the absence of standardized referral criteria. Multiple studies have been conducted regarding the establishment of either time- or needs-based criteria for referral to outpatient specialty palliative care (17,49-53). Time-based criteria include cancer diagnosis/trajectory (e.g., newly metastatic disease, disease progression, disease recurrence) and prognosis, while needs-based criteria include symptom burden, performance status, and end-of-life care planning (50). Time-based criteria appear to be more routinely and objectively identifiable. Nevertheless, oncologists demonstrate inconsistencies (both at the individual level and as a group) in application of time-based criteria (54,55). They also struggle to prognosticate effectively for patients due to inconsistent use of objective markers such as symptom and performance status scales to inform prognostication and facilitate prompt recognition of the transition to the dying phase of illness (56). Needs-based criteria for referral have the potential to recognize patients who could benefit from specialty palliative care involvement on a more individualized basis. Validated scales such as the Edmonton Symptom Assessment Scale (ESAS) (57), the Eastern Cooperative Oncology Group (ECOG) performance status scale (58), and other patient-reported outcomes measures (PROMs) (59) have been developed to support regular, standardized assessment of decrements in quality-of-life and functioning/wellbeing. However, routine data collection remains challenging to implement given time and resource burden and a lack of well-defined processes to interpret, flag, review, and respond to abnormal results (60).

In our institution, the 20% of referrals that originated from the palliative care team at time of inpatient discharge further emphasizes the need to define and implement objective referral criteria in routine clinical practice. It is likely that many of these patients had demonstrable need for outpatient specialty palliative care prior to admission that were not recognized until the hospital admission brought these concerns to acute attention. Further research is needed to support implementation of standardized screening methods and referral criteria, as this remains understudied in the outpatient setting relative to the inpatient setting (9,61).

Appointment completion

Potential causes of delayed referral to outpatient palliative care include physician and patient/support system reticence to consider specialty palliative care involvement, often as a result of poor understanding and communication of the purpose of palliative care. Factors contributing to patient barriers to acceptance of palliative care include knowledge (62), stigma and/or skepticism (63), self-efficacy and/or perceived resiliency countermanding worsened physical wellbeing (64), and negative perceptions by their social support systems (65). Interestingly, though surgical oncology patients generally express appreciation for their interactions with specialty palliative care providers, they commonly have difficulty articulating specific improvements as a direct result of palliative care involvement, particularly when their surgical oncologist has not also addressed these needs (66). Anxiety and hesitancy among cancer patients under the care of medical oncologists were relieved after being presented with the Center to Advance Palliative Care (CAPC)’s definition of palliative care (67). In our study, 41% of patients did not see a specialty palliative care provider due to their preference; further research is needed to understand the factors underlying this preference across a diverse patient population. These findings also suggest that robust and open communication about specialty palliative care between patients and their oncologists may facilitate early, integrated uptake. The bow tie model of palliative care created by Hawley (68), illustrates how concurrent disease-directed and palliative care can help normalize early integration of palliative care. Pairing communication training with use of this model can counteract fears of upsetting or abandoning patients and/or taking away hope (69).

Timeliness

All specialties showed significant opportunity to shift outpatient specialty palliative care referrals earlier in the disease process. This is demonstrated by the fact that 49% of patients were unable to complete their referral to outpatient specialty palliative care due to hospice enrollment or death, suggesting that the timing of referral may have missed the optimal window for outpatient palliative care involvement. Our finding aligns with prior results by Paiva et al., who showed that approximately one-third of patients missed their first palliative care appointment after referral most commonly due to death (15). Physicians from multiple surgical oncology subspecialties and medical oncology continue to believe that palliative care only holds a role when disease-modifying treatments are stopped and/or when patients are in the dying phase of illness (52,53) despite level I evidence supporting improved quality-of-life, survival, and quality of end-of-life care with earlier referral (17,70-73). Although rates of hospice enrollment at time of death were high in our cohorts, many patients were enrolled only within two weeks of death. This may reflect an analogous phenomenon of oncologist failure to recognize the transition to the dying phase of illness. Alternatively, patients may have adequate support through outpatient specialty palliative care services, and so additional support from hospice agencies is unnecessary prior to the acute dying process. We observed that gynecologic oncology patients had markedly longer intervals from initial specialty palliative care referral to death. We attribute this to greater symptom burden paired with greater recognition of symptom burden earlier in the disease course by gynecologic oncologists (74). This recognition is facilitated by department faculty with double board certification in hospice and palliative care medicine, robust faculty and fellow continuing medical education in primary palliative care and communication skills (47,75), and long-term collaborative working relationships between the divisions of gynecologic oncology and palliative care (76). Consideration of the process map (Figure 3) suggests that other subspecialties could fail to recognize that patients have appropriate needs for specialty palliative care referral. Reticence among patients, families, and care teams to utilize palliative care resources may also play a role. Training medical and surgical oncologists in hospice and palliative medicine, whether through fellowship rotations or additional subspecialty training, both increases interest and acceptability of palliative care and improves the quality of care for surgical oncology patients with palliative care needs (77-79).

It is critical that the implementation of standardized screening processes and/or referral criteria also evaluates downstream impact on the timeliness of specialty palliative care integration. In our study, most patients referred to specialty palliative care saw a provider within 30 days, indicating adequate resources to handle the current referral volume. Increasing referral volume with standardized patient evaluation and referral prompts can stress the health system and create new bottlenecks that did not previously exist.

Strengths and limitations

Strengths of our study include a large sample size across diverse oncologic specialties including medical and surgical oncology. While studies investigating palliative care referral uptake exist within each individual specialty, this study uniquely compares referral uptake across many subspecialties with different models of care. We leveraged a real-world palliative referral tracking database maintained in the course of usual clinical care to gain insight across a large portion of the referral process map. Our research team is interdisciplinary, including oncology and palliative care providers, and we used rigorous, transparent, and reproducible quality improvement process to present a model for quality improvement work at other institutions. The main limitations of our study stem from the inherent nature of a retrospective study. While institution-specific results are not necessarily generalizable, the quality improvement workflow presented and evaluated against an established referral process flow diagram presents a quality improvement process that could be readily implemented across many diverse institutions. Though we are able to assess uptake and timeliness of specialty palliative care referrals by oncologic subspecialty, we have no way to assess differences in the false negative rate for referrals or failure to refer patients meeting criteria for palliative care involvement. This limits our ability to comment on upstream barriers to earlier specialty palliative care integration. For purposes of statistical analysis, we grouped GI, CRC, and HPB patients together, which limit our ability to assess differences between these subspecialties. Lastly, assessing referral sources by primary cancer site does not take into account difference in treatment paradigms by specialty, as certain cancer types may lack involvement by one or more of surgical, radiation, or medical oncology.

Conclusions

In a single institution, retrospective quality improvement study, we found that most cancer patients referred to outpatient specialty palliative care utilized their referral and were able to see a provider within 30 days. More patients were referred to outpatient specialty palliative care by medical oncology or as the result of an inpatient admission than by surgical oncology. Though we observed high rates of hospice involvement at time of death, many patients were referred to outpatient specialty palliative care within five or fewer months of death, and a proportion of patients did not see palliative care due to hospice transition or death.

Retrospective review of a real-world institutional referral tracking database and mapping data analysis against an established process map for palliative care referral can aid root cause analysis of suboptimal uptake and/or delayed integration of specialty palliative care. In our institution, relevant goals for quality improvement include increasing palliative care referrals by surgical oncologists, facilitating recognition of need for referral earlier in the disease course, and giving physicians and patients the tools to articulate the benefits of palliative care and its acceptability concurrently with disease-directed treatment. This quality improvement workflow can serve as a model for other institutions to identify problems within their palliative care referral pathway to design tailored interventions best suited for their specific needs.

Acknowledgments

An earlier version of this Abstract was presented at the 2024 ASCO annual meeting on May 29, 2024.

Footnote

Reporting Checklist: The authors have completed the STROBE Reporting Checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-25-39/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-39/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-39/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-25-39/coif). C.S. reports that he receives royalties for reviewing articles on UpToDate, and is a member of the Development and Awards committees of the American Academy of Hospice and Palliative Medicine. L.S. reports that she is the Palliative Care Subcommittee Chair for the Society of Gynecologic Oncology, which is an unpaid position. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was exempted from full review by the Institutional Review Board of the University of Kansas Medical Center (Institutional Organization #IORG0000100) and informed consent for this retrospective analysis was waived.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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