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Published in final edited form as: Cancer. 2025 Sep 1;131(17):e35976. doi: 10.1002/cncr.35976

Patient-reported discordance between care goals and treatment intent in advanced cancer

Manan P Shah 1, Neil S Wenger 2, John Glaspy 1, Ron D Hays 2, Rebecca L Sudore 3, Maryam Rahimi 4, Lisa Gibbs 4, Sidharth Anand 1, Chi-Hong Tseng 2, Anne M Walling 2,5
PMCID: PMC12581213  NIHMSID: NIHMS2115484  PMID: 40851410

Abstract

Purpose:

Goal-concordant care is achieved when treatment is aligned with goals. This study describes patient-reported concordance between care goals and treatment intent in advanced cancer compared to other serious illnesses.

Methods:

A post hoc cross-sectional analysis of baseline survey responses was conducted in adult patients enrolled in a multisite trial of advance care planning. Patients reported whether they prefer and whether they are receiving treatment that prioritizes longevity (life-extending care) versus comfort (comfort-focused care). Concordance between care preferences and perceived treatment intent in patients with advanced cancer versus other advanced illnesses was compared. Mortality rates for patients with cancer stratified by perceived care concordance are reported.

Results:

Among 1099 patients, those with advanced cancer (n = 231) reported similar preference for comfort-focused care (49% vs 48%, p = .47) and had similar 24-month mortality (16% v 13%, p = .25) as patients with other serious illnesses (n = 868). Among patients preferring comfort-focused care, patients with cancer (n = 113) were more likely than patients with other illnesses (n = 413) to report receiving (discordant) life-extending care (37% vs. 19%, p < .001). Among patients with cancer preferring comfort-focused care, there was no statistically significant difference in 24-month mortality between those who reported receiving (discordant) life-extending versus (concordant) comfort-focused care (24% v 15%, p = .31).

Conclusion:

Compared to patients with other serious illnesses, a relatively large portion of patients with advanced cancer reported that their treatment discordantly focused on longevity over comfort despite their goal to prioritize comfort over longevity.

Keywords: advance care planning, advanced cancer, care concordance, goals of care, patient-reported

INTRODUCTION

The treatment of advanced cancer generally aims to optimize longevity and quality of life. Though extending life and improving quality of life are usually synergistic goals in treating advanced cancer, in some cases, patients and clinicians may have to discuss prioritizing one goal over the other.1 Because of this challenge, optimal management of advanced cancer, as well as other advanced illnesses, requires that clinicians understand each patient’s goals to direct treatment to meet those goals to the degree possible. Failure to do so puts patients with advanced illness at risk of receiving burdensome treatment that is discordant with their goals.

Clear communication and advance care planning (ACP) helps patients “receive medical care that is consistent with their values, goals, and preferences.”2 Effective communication and ACP improve patient satisfaction with care, family quality of life, and the likelihood that patients’ wishes are known and followed.17 In the management of advanced cancer, frequent communication and reassessment of goals are necessary as patients often suffer from progressive functional decline and a variety of burdensome symptoms that accelerate near the end of life.810

Prior research suggests inadequate and delayed communication about patients’ goals and treatment intent in advanced cancer care.1113 Goals of care documentation by oncologists is reported to be as low as 10%. Despite guidelines to discuss patients’ treatment goals when patients are clinically stable, most of these documented discussions tend to occur in the acute care setting.1417 In a prospective, multisite study of patients with cancer, at an average 4 months before death, only 37% of patients reported having discussed their cancer treatment goals with their doctors.3

While patients with advanced cancer should receive treatment guided by their goals, the relationship between their preferred goals and perceived treatment has not been reported. In this study, we measured the concordance between patients’ prioritization of longevity versus comfort and their understanding of their current treatment’s prioritization of longevity versus comfort. To contextualize our description of patient-reported care concordance in advanced cancer, we compare the findings with patients with other serious illnesses and explore the association between perceived care concordance and mortality.

METHODS

To explore patient-reported concordance between goals of care and treatment intent, we performed a post hoc cross-sectional analysis of baseline survey data from a multisite trial of ACP in patients with serious illness. This study was approved by the institutional review board at UCLA (18–001612) with delegation from the other two health systems (University of California San Francisco and University of California Irvine).

Patients in this study were receiving primary care within three academic health systems, had at least two primary care visits in the past 12 months, were at least age 18, had no advance directive or physician orders for life-sustaining treatment in the electronic health record in the past 3 years, and were identified in real time using an automated mechanism based on clinical data, encounters, and diagnoses. Before undergoing any interventions, all 1100 enrolled patients completed a baseline survey. Patients completed surveys again after 12 months and 24 months, at which points mortality data were also collected. For this post hoc analysis, we included only survey responses at baseline and mortality data at 24 months.

Complete inclusion criteria and definitions for advanced illnesses can be found in the referenced trial protocol.18 Patients included in this analysis were sampled from a group of patients identified by an automated algorithm that captured advanced cancer, advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage renal disease, end-stage liver disease, and amyotrophic lateral sclerosis. This algorithm was validated as detailed in the trial protocol.19 The algorithm had specific criteria to ensure severity of illness was captured and yielded a seventh category of advanced age (>75 years) and one of these serious illnesses on the problem list.

Among the 1100 patients who completed the baseline survey, 86 patients had more than one serious illnesses: for patients with advanced age and an advanced illness, we assigned the advanced illness; in patients with more than one advanced illness, we assigned the illness with the highest mortality rate in this study. After ensuring each patient was assigned to a single illness category, 231 had advanced cancer, 163 had advanced heart failure, 109 had advanced chronic obstructive pulmonary disease, 213 had end-stage renal disease, 72 had end-stage liver disease, none had amyotrophic lateral sclerosis, and 311 had advanced age and one of the serious illnesses on the problem list. One patient had missing data for disease attribution.

Based on prior work, the baseline paper survey asked two questions to assess whether patients believed they were receiving goal-concordant care.19

Please think about your current health and how you feel today. If you had to make a choice today, in your current health, would you prefer:

  • Medical care that focuses on extending your life as much as possible, even if it means having more pain and discomfort

  • Medical care that focuses on relieving your pain and discomfort as much as possible, even if that means not living as long

  • I am not sure

Which of the following best describes the type of medical care you are getting from your doctor(s) right now?

  • Medical care that focuses on extending your life as much as possible, even if it means having more pain and discomfort

  • Medical care that focuses on relieving your pain and discomfort as much as possible, even if that means not living as long

  • I am not sure

Based on patients’ responses to the first question, we categorized patients’ goals as preferring life-extending care (LEC), preferring comfort-focused care (CFC), or unsure. Based on patients’ responses to the second question, we categorized patients’ perception of current treatment intent as LEC, CFC, or unsure. The clinical trial protocol also recorded whether patients were alive or deceased at 24 months. The survey also included a 5-item Consumer Assessment of Healthcare Providers and Systems communication scale (scored 1–4, with 4 being the best),20 Patient-Reported Outcomes Measurement and Information System global physical and mental health items,21 and Patient-Reported Outcomes Measurement and Information System-29 4-item depression and 4-item anxiety scales.22

We compared patient demographic characteristics (age, gender, race, ethnicity, language, and partnered status), quality of physician communication, general mental health, general physical health, depression symptoms, anxiety, and mortality between patients with advanced cancer and patients with other serious illnesses. We compared the distributions of care preferences and the distributions of perceived treatment intent between the two groups using χ2 tests of independence. We described care concordance by stratifying patients’ care goals (LEC, CFC, or unsure) with their perception of treatment intent (LEC, CFC, or unsure). We compared the portions of patients who preferred CFC but discordantly perceived their treatment as LEC in the two groups using independent samples t-tests. In addition, we compare mortality rates between the two groups and estimated associations of goals and treatment intent with 24-month mortality among patients with advanced cancer. All statistical analyses were conducted using Stata, implementing two-sided t-tests for all comparisons of continuous data and χ2 tests for comparisons of categorical data.

RESULTS

Of 1100 patients enrolled in the pragmatic trial and completed baseline surveys, one was excluded from the analysis because of missing advanced illness attribution. Patients with advanced cancer (n = 231) were younger (62 years vs 71 years, p < .001) than those with other serious illnesses (n = 868) and more likely to be married or in a committed relationship (71% vs 57%, p < .001) (Table 1).

TABLE 1.

Demographic data for patients with advanced cancer compared with other serious illnesses.

Demographics Advanced cancer, n = 231 Other serious illnesses, n = 868 p
Age, mean years (SD) 62 (14) 71 (15) <.001
Women, N (%) 108 (47%) 414 (48%) .7
Race, N (%) Asian: 21 (9%) Asian: 82 (9%) <.001
Black: 3 (1%) Black: 70 (8%)
White: 177 (77%) White: 567 (65%)
Other: 30 (13%) Other: 149 (18%)
Ethnicity, N (%) Hispanic: 37 (16%) Hispanic: 164 (19%) .039
Not Hispanic: 130 (56%) Not Hispanic: 407 (47%)
Other/not available: 64 (28%) Other/not available: 297 (34%)
Preferred language, N (%) English: 201 (87%) English: 717 (83%) .2
Spanish: 16 (7%) Spanish: 97 (11%)
Other: 14 (6%) Other: 54 (6%)
Married/committed relationship, N (%) 163 (71%) 495 (57%) <.001

There was no difference in physician communication scores among patients with advanced cancer versus other advanced illnesses (3.6 vs 3.6, p = .15). Patients with advanced cancer were more likely than patients with other serious illnesses to report more favorable mental health (52 vs 50, p < .001) and physical health (47 vs 45, p = .001). Similarly, patients with advanced cancer were less likely to report depressive symptoms compared to patients with other serious illnesses (50 vs 52, p < .001) (Table 2).

TABLE 2.

Composite scores based on survey responses for patients with advanced cancer compared with other serious illnesses.

Survey scores, mean (n) Advanced cancer Other serious illnesses p
Physician communication 3.6 (n = 231) 3.6 (n = 868) .15
General mental health 51.8 (n = 229) 49.9 (n = 861) <.001
General physical health 46.8 (n = 229) 45.0 (n = 861) .001
Depression 49.8 (n = 230) 51.9 (n = 860) <.001
Anxiety, mean 52.6 (n = 230) 52.8 (n = 853) .78

Note: Physician communication is scored with a possible range of 1–4 (higher scores represent better communication). The other five scores are scored using a T-score metric, with a mean of 50 and SD of 10 in the US general population. A higher score represents better general mental and physical health and worse depression and anxiety.

Patients with advanced cancer had similar goals of care as patients with other serious illnesses, with 25% (vs 23%) preferring LEC and 49% (vs 48%) preferring CFC. However, patients with advanced cancer were more likely to report receiving LEC (51% vs. 35%) and less likely to report receiving CFC (19% vs 28%) than those with other serious illnesses (p < .001) (Table 3). Among patients preferring CFC (n = 526), patients with advanced cancer (n = 113) were more likely than patients with other serious illnesses (n = 413) to report receiving LEC (37% vs. 19%, p < .001) (Figure 1).

TABLE 3.

Patient-reported goals of care and perceived treatment intent in patients with advanced cancer compared with other serious illnesses.

Goals of care and perceived treatment intent, n (%)a Advanced cancer, n = 231 Other serious illnesses, n = 868 p
Prefer life-extending care 58 (25%) 203 (23%) .47
Prefer comfort-focused care 113 (49%) 413 (48%)
Unsure of preference 58 (25%) 233 (27%)
Receiving life-extending care 118 (51%) 304 (35%) <.001
Receiving comfort-focused care 45 (19%) 246 (28%)
Unsure of care received 63 (27%) 286 (33%)
a

No response to the preference question for 21 patients (2 cancer, 19 other conditions) and to the treatment intent question for 37 patients (5 cancer, 32 other conditions).

FIGURE 1.

FIGURE 1

Care goals versus perceived treatment received in patients with advanced cancer (left) and patients with other serious illnesses (right). Note: Patients with no response to either the care goal or perceived treatment received questions are not included in this figure. There was no response to the preference question for 21 patients (2 cancer, 19 other conditions) and to the treatment intent question for 37 patients (5 cancer, 32 other conditions).

Patients with advanced cancer had similar 24-month mortality compared to patients with other serious illnesses (16% vs 13%, p = .25). Among patients with advanced cancer, those who preferred LEC and CFC had similar mortality at 2 years (19% vs 18%, p = .88). Among patients with cancer who preferred CFC, there was no statistically significant difference in 24-month mortality between those who reported receiving LEC versus CFC (24% vs 15%, p = .31) (Table 4).

TABLE 4.

Mortality at 24 months for patients with advanced cancer stratified by patient-reported goals of care and perceived treatment intent.

24-month mortality, No. of deaths/n (%), by goals of care and treatment intent Goals of care
Life-extending care Comfort-focused care Unsure
Treatment intent Life-extending care 10/51 (20%) 10/42 (24%) 5/25 (20%)
Comfort-focused care 0/0 (not available) 6/40 (15%) 1/5 (20%)
Unsure 1/7 (14%) 4/29 (14%) 0/26 (0%)

Note: Table displays number of decedents/denominator in each cell. There was no response to the preference question for 1 patient, no response to the treatment intent question for 4 patients, and no response to both questions for 1 patient.

DISCUSSION

Despite having similar goals for comfort-focused care, patients with advanced cancer in our study were significantly more likely than patients with other serious illnesses to perceive their treatment to be focused on longevity over comfort. Patients with advanced cancer were almost twice as likely to report discordance between their goals and the treatment they were receiving; this discordance was driven by a significant portion of patients who preferred prioritizing comfort but described the treatment received as prioritizing longevity.

We found that a relatively large portion (37%) of patients with advanced cancer who had a goal to prioritize their comfort reported that their treatment was at odds with that goal. The results of this descriptive study allow us to hypothesize about potential factors unique to advanced cancer that may drive patients who prioritize comfort over longevity to feel that they are being treated in a manner that is at odds with that goal. Further studies are needed to test these hypotheses.

We also describe mortality rates for patients with advanced cancer stratified by their reported care concordance. We note that for patients who preferred to prioritize comfort over longevity, those who reported receiving care that discordantly prioritized longevity had a numerically higher mortality rate than those who reported receiving goal-concordant comfort-focused care; these results were not statistically significant.

A major limitation of this study is that granular clinical data (e.g., cancer subtypes, treatment plans) were not available for this analysis. Because of the potential heterogeneity of patient samples, confounding factors cannot be effectively ruled out. Future work examining the clinical factors that may contribute to the significant care discordance noted in our study is warranted. Other important limitations are that our results are based on patients’ perceptions of their treatment and that their responses are to questions that pose a false dichotomy: CFC is defined as treatment focused on “relieving your pain and discomfort as much as possible, even if that means not living as long,” and LEC is defined as treatment focusing “on extending your life as much as possible, even if it means having more pain and discomfort.” Generally, medical care for advanced illnesses aims to synergistically improve comfort and longevity. However, it is noteworthy that when responding to these survey questions, patients with advanced cancer were about twice as likely as patients with other advanced illnesses to simultaneously report a preference for care that prioritizes comfort over longevity while feeling that their current treatment focuses on longevity over comfort. We caution readers to interpret our findings within the schema of the false choice posed by the question items. Though these questions may not reflect all clinical scenarios, the responses provide some insight to assess patients’ sense of whether their care priorities are aligned with their providers’ treatment priorities. Further research exploring this topic is warranted.

There is a paucity of recently published literature for direct comparison. One interview study from 2002 of 1185 seriously ill Medicare beneficiaries similarly reported that one third of patients who preferred comfort care believed the treatment they received was contrary to their preference for comfort-focused care. However, unlike our analysis, this study did not stratify patients by illness or condition. They reported that such discordance (preferring CFC but receiving LEC) was associated with increased 1-year health care costs and, contrary to our results, longer survival.23

Ultimately, the reason for the markedly increased patient-reported goal-discordant care in advanced cancer found in our study is unclear. Whether this discordance relates to gaps in communication (though the similar communication scores argue against this hypothesis), factors specific to advanced cancer, or true discordance because of inappropriately aggressive oncologic treatment remains uncertain. Nonetheless, these findings highlight an important area for further study and improvement.

In our study, patients with advanced cancer were younger than patients with other advanced illnesses. They also reported slightly better baseline physical and mental health than patients with other advanced illnesses, but these statistically significant differences may not be clinically meaningful. Younger baseline age and potentially better fitness of patients with advanced cancer may prompt more aggressive care or inhibit honest communication surrounding goals of care and treatment intent. At the very least, these results suggest that even if patients with advanced cancer may appear younger or more fit at baseline, it is important that oncologists explicitly elicit their goals of care and communicate the intent of treatment. Notably, oncology treatments may have more significant adverse effects than those for other advanced illnesses. In this scenario, it is plausible that treatment toxicity may bias patients to characterize their medical care as focusing on longevity over comfort. Nonetheless, such patient-reported discrepancies between goals and perceived treatment should be explicitly discussed and reconciled. Perhaps some patients in this group would benefit from treatment modifications to prioritize quality of life over longevity.

Responses from patients with advanced cancer may also be affected by the relatively rapid deterioration of certain cancers, the grim portrayal of cancer in the media, and the marked prevalence of comorbid mental health disorders such as adjustment, anxiety, and depressive disorders.24 Interestingly, prior studies show that increased anxiety and emotional arousal in advanced cancer may lead to patient denial about incurability.15 However, this literature is more than 2 decades old. It is at odds with the results of our study, which revealed that patients with advanced cancer had relatively, albeit marginally, better mental health at baseline compared to patients with other serious illnesses and that their increased patient-reported goals of care discordance was characterized by perception of LEC despite preference for CFC.

The results of our study and more recent literature raise another question: Are clinicians to blame for the relatively high patient-reported care discordance in advanced cancer? In a survey of 4074 oncologists, most reported reluctance to initiate discussions about goals of care for patients with advanced cancer who appeared well, did not have symptoms, or had not exhausted all treatment options.25 Oncologists’ reported reluctance to initiate discussions about care goals for such patients is worrisome as studies suggest that most patients expect their clinicians to initiate goals of care discussions.26 It is possible that oncologist-related reluctance to discuss palliative treatment goals may contribute to the relatively increased patient-reported discordance seen in advanced cancer compared to other serious illnesses. Although prognosis and potential treatment options for advanced cancer have improved in the past decade, our study highlights the importance of openly discussing patients’ goals and explicitly articulating treatment intent with all patients with advanced cancer.

In conclusion, our study reveals a higher rate of perceived care discordance among patients with advanced cancer and highlights the need for further investigation of the factors driving these results. Ultimately, our findings suggest a need for more timely and effective communication about goals of care and treatment intent in advanced cancer. Oncology teams may be able to mitigate patient-reported care discordance and improve shared medical decision-making by (1) explicitly eliciting patients’ goals of care, (2) communicating the intent of treatment, and (3) trying to reconcile any discordance between the two.

ACKNOWLEDGMENTS

The research reported in this report was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Award (PLC-1609–36291). The views presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of PCORI®, its Board of Governors, or its Methodology Committee. This Research was also supported by the Biomedical Informatics Program at UCLA CTSI and funded by the National Institutes of Health through the National Center for Advancing Translational Sciences (NCATS) Grant (#UL1TR001881). Dr. Sudore is funded in part by the National Institute on Aging, National Institutes of Health (K24AG054415). The contents do not represent the views of the U.S. Department of Veterans Affairs or the United States Government.

Funding information

Patient-Centered Outcomes Research Institute, Grant/Award Number: PLC-1609–36291; National Center for Advancing Translational Sciences (NCATS) Grant, Grant/Award Number: UL1TR001881

Footnotes

CONFLICT OF INTEREST STATEMENT

None.

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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