American Society of Clinical Oncology guideline update on palliative care for patients with cancer: Addressing the reality gap

Ensuring access to palliative care for patients with cancer requires both political and institutional commitment.

The American Society for Clinical Oncology (ASCO) has been a fervent champion of the integration of specialty palliative medicine into oncology care. For example, the presidential theme of the ASCO annual meeting 2024 was “The Art and Science of Cancer Care: From Comfort to Cure” and for the first time ever, palliative care studies and education were incorporated into all major sessions of the meeting including the plenary session.¹ They supported the formation of a palliative oncology community of practice that continues to grow² and created an integrated hematology-oncology and palliative medicine fellowship in collaboration with the Accreditation Council for Graduate Medical Education (ACGME).

ASCO recently published a clinical practice guideline update on the integration of palliative care into oncology care for patients with cancer.³ This update aimed to incorporate data since the last published guidelines in 2016 and includes groups that were previously excluded, such as patients with hematological malignancies and those enrolled in early-phase trials. The 2024 guidelines, developed by a multidisciplinary panel of experts, aims to provide clinicians with evidence-based recommendations for when and where palliative care should be provided, as well as define what constitutes specialty palliative care.

As palliative care clinicians, we applaud ASCO’s efforts to provide meaningful guidance and feel the update is an improvement over the first guidelines. First, we appreciate, that the guidelines no longer include a suggested timeframe for referral to “early” palliative care and call for high-quality trials that explicitly account for widely varying illness trajectories of patients with cancer. They note that although specialty palliative care (SPC) has no adverse events, some data suggest that not all patients with advanced cancer benefit from early specialty palliative care. Given the SPC workforce shortages, they acknowledge that research is needed to better prioritize the groups of patients who benefit the most and to address the varying needs across different cancer types.

Second, they include recommendations on how palliative care services relate in practice to other existing or emerging supportive care services. We welcome this emphasis on whole-person care and the benefits of a full team in accomplishing this well. For example, although psychological disorders are common in advanced cancer, most palliative care providers do not have extensive training on the treatment of mental health disorders and are not licensed to provide psychotherapy which is first-line treatment for anxiety, depression, and adjustment disorder. The shortage of experts in psycho-oncology negatively impacts patients’ care and quality of life.

Third, the panel reiterates its recommendation to use telephones and new technologies to improve access to underserved populations. The use of telehealth, which has grown tremendously since the COVID pandemic, has numerous benefits for both patients and providers and has become a routine part of palliative care delivery across the country.⁴ Recently, Greer et al.⁵ found that delivery of early palliative care via video versus in-person visits demonstrated equivalent effects on quality of life in patients with advanced non–small cell lung cancer.

Finally, the panel acknowledges the critical role of the oncology team in addressing patients' palliative care needs. Although we recognize that oncology teams cannot do everything, asking patients to see both palliative care specialists and oncologists has negative consequences. It requires twice as many visits (and patient copays) in a population for whom financial and time toxicity are significant concerns. Although the limited published studies comparing outcomes between specialty palliative care and primary palliative care have not demonstrated equivalent results, we agree with the panel that prioritizing primary palliative care interventions for future research funding is urgently needed.

The importance of primary palliative care is also tied to our largest worry regarding the guidelines. Like the first set of guidelines, they are aspirational and cannot, without major changes in health care and its financing, be achieved. Few, if any, of the existing health systems will be able to provide SPC to the recommended patients. Limited access to SPC has been documented since the first edition of the ASCO guidelines was published. Data from some of the most well-resourced PC departments in the country demonstrate how infrequently patients with advanced cancers are referred to PC early after diagnosis: Hui et al.⁶ found that at The University of Texas MD Anderson Cancer Center, only 27% of such patients were referred to supportive oncology within 3 months of diagnosis, and we presented similar results from our center showing that only 39.1% of patients with advanced solid tumors were referred to supportive oncology within 3 months of diagnosis.⁷

In less-resourced locations, the palliative care capacity is even worse. Per a 2019 report, 94% of US hospitals with more than 300 beds have a palliative care team. However, in Alabama, Mississippi, New Mexico, Oklahoma, and Wyoming, less than 40% of hospitals reported having a palliative care team.⁸ Although the proportion of cancer centers with outpatient palliative care increased significantly between 2009 and 2018 among National Cancer Institute (NCI)-designated cancer centers (59% vs. 95%), the increase was not significant at non–NCI-designated cancer centers (22% vs. 40%).⁹ It is estimated that 80% of patients actually get their cancer care in the community in non–NCI-designated cancer centers, only 40% of which have outpatient palliative care services.^{2, 9}

The problem of limited access is going to get worse. The guidelines markedly increase the number of patients they recommend should be seen by specialty palliative care. The expert panel recommends SPC for all patients with hematological malignancy and those enrolled on early-phase trials for the first time. Conservatively per 2024 estimates, there are 180,000 patients diagnosed annually with hematological malignancies¹⁰ and 13,000–19,000 enrolled in phase 1 trials.¹¹ The guidelines acknowledge the limited data on the effects of palliative care interventions in patients with hematological malignancies, particularly outside the setting of prolonged hospitalization for acute myeloid leukemia induction chemotherapy and hematopoietic stem cell transplantation. Patients with hematological malignancies are now heterogeneous in terms of palliative care needs and the timing of those needs during their treatment course.¹² Palliative care interventions have also been studied in patients in early-phase trials.^13-15 Typically, these patients have a limited prognosis and significant symptomatology and should benefit from SPC; however, results have been mixed.¹⁶ It remains unclear which groups of patients should be prioritized for specialty palliative care in settings with limited access.

Even if the guidelines did not suggest consultation to a larger group of patients, the shortage of SPC is likely to worsen. We are witnessing a unique time in cancer care, with a rising incidence of cancer alongside a growing number of patients living longer with advanced cancer due to recent innovations in treatments, and often with associated cumulative toxicity.¹⁰ In addition, data on the positive impact of SPC on non-oncological serious illnesses will lead to increasing demand for SPC. It has been estimated that by 2040 the demand for palliative care physicians in the United States will range from 10,640 to almost 24,000. Supply will range from 8100 to 19,000.¹⁷ If we extrapolate the number of patients with cancers who would be referred to SPC based on the updated ASCO guidelines, the current system will be quickly overwhelmed, and there may be reduced access for those who need it most.

In addition to the limited quantity of palliative care services, the structure of palliative care teams is also variable across the United States. ASCO guidelines recommend interdisciplinary SPC based on available data.^18-21 Although no head-to-head studies have directly compared interdisciplinary versus single-disciplinary palliative care interventions, several negative outcomes have been reported in studies evaluating nurse-led palliative care interventions^{14, 22, 23} in contrast to interdisciplinary PC interventions that have generally shown improved outcomes.^18-21 Part of the overall efficacy of SPC is likely related to the coping support that is often provided by chaplains and social workers. There is no readily accessible data on what percentage of outpatient palliative care teams nationally are multidisciplinary but anecdotally many are not and some are single-disciplinary and often nurse-led.² Even among well-resourced NCI cancer center outpatient palliative care clinics, 25% of respondents in a survey on barriers to early palliative care reported that their clinic was unable to provide the necessary multidisciplinary services.²⁴

Without a plan, calling for increased SPC in these circumstances places an undue burden on a workforce that is already stretched to capacity. Aspirational guidelines are motivational only to the extent that the reader feels like they can achieve them. Our worry is that the guidelines are so aspirational that both oncologists and palliative care specialists will feel demoralized. Oncologists reading the guidelines may realize that SPC can never see all the patients who they are supposed to refer and thus stop trying. Or worse, the long wait times may lead an oncologist to stop believing that specialty palliative care is helpful to their patients. In response to being overwhelmed, specialists in palliative care may develop structural algorithms to cap their workload. These algorithms, which do not take into account patient needs, may lead to patient or oncologist frustration. Alternatively, SPC may try to fit more patients into limited slots, affecting the quality of care or precipitating burn-out.

For the guidelines to be motivating, clinicians must believe that there is a way to get from where we are to a system in which all these patients can be seen by SPC (or have their palliative care needs met). An implementation strategy is needed. Given the noted disparities between supply and demand, we propose short- and long-term strategies to aid health systems with their efforts to more widely integrate palliative care into oncologic care.

In the short term, given SPC is a scarce resource, it is important to prioritize which patients benefit most from specialty palliative care and how often they need to be seen (or the right “dose” of SPC) and in so doing move toward a “timely” or “targeted” specialty palliative care referral model.^25-27 As the guidelines note, the benefits of early palliative care are not consistent across studies,^28-33 likely due to the significant variation in needs from patient to patient and between different cancer types and trajectories. Ultimately, the timeliness of a referral should be needs-based. Studies on electronic patient-reported outcomes (ePRO) monitoring in oncology care have shown improvements in both quality of life and survival, as well as longer durations on cancer-directed treatments.^{34, 35} Unfortunately, the infrastructure and labor force cost needed to effectively monitor ePROs in routine clinical practice is significant. There are several trials currently investigating tools to help prioritize consultations. These trials are using different methods to screen patients using PROs and remote symptom monitoring (NCT04936568, NCT06396598, and NCT06326554), and a trial is even underway to investigate the use of an artificial intelligence model for identifying gynecological cancer patients who could benefit from palliative care (NCT06182332). Until such an easily applicable tool is created, oncology teams can consider the use of the quick and free “ESAS” to screen patients.³⁶

Data regarding the “dose” of SPC are beginning to appear. A stepped palliative care model was recently found to be noninferior to the early palliative care model,³⁷ requiring an initial palliative care visit within 4 weeks of diagnosis and subsequent visits only at the change of treatment or after a hospitalization. The impact of these changes on access needs to be determined, but providing every patient with an initial consultation with SPC within 4 weeks of diagnosis is still likely not feasible.

Regarding the ideal SPC intervention, we should not let perfect be the enemy of the good. There are some data to suggest that single-disciplinary PC may be better than usual care. The ENABLE II study investigated a multi-component, psycho-educational, palliative care intervention conducted by an advanced practice nurse in a rural setting.³⁸ Compared to participants receiving usual oncology care, those receiving the palliative care intervention provided concurrently with oncology care had higher QOL and mood.³⁸ Guidelines should reflect this, endorsing single-disciplinary care as a viable alternative when comprehensive palliative care teams are not accessible and using existing oncology teams to provide emotional and coping support to patients.

Second, given we cannot imagine a time when there will be enough SPC to see all patients with palliative care needs, there is a need to prioritize primary palliative care at multiple levels. It is essential to allocate resources toward enhancing the training of hematology-oncology fellows, enabling them to effectively address the primary palliative care needs of their patients. Treating cancer-related pain and distress should be as important as prescribing the correct anticancer regimen. Shared decisions about anticancer treatments should include as much information about its impact on the patient’s function and quality of life as whether it will impact the cancer.³⁹ Every fellowship should include a serious illness communication curriculum and competency in giving serious news, talking about goals of care, and referral to hospice should be formally assessed and documented. An easy place to start would be to stress these topics in medical oncology boards as curricular attention often follows evaluation. Currently, palliative care, survivorship, and communication comprise just 11% of the content covered in the medical oncology boards. We have seen some progress in this regard in recent years. In a 2010 study that surveyed hematology oncology fellowship program leadership across the United States, 26% NCI and 22% of non-NCI program leaders reported mandatory PC rotations for oncology fellows. A later similar study in 2021 found that this number had risen to 68% requiring PC rotations.^40-42

In addition to education for physicians, in many practices, other team members such as advanced practice providers, nurses, social workers, and chaplains often spend more time collectively with patients. All should receive primary palliative care education as a way to maximize support for patients. Increased training on its own, is unlikely to show a benefit without structural changes. First, oncology clinicians need to have the time built into their practice to provide primary palliative care. A typical oncologist in our health care system sees eight to 10 patients in a half day; a typical SPC sees four. Financial models, particularly the wRVU system, must reflect the importance of palliative care and the time required to provide it. When reimbursement structures prioritize high-volume visits, clinicians may be incentivized to focus on those aspects, potentially neglecting the comprehensive care that patients need. To shift toward a value-based health care model, we must ensure that financial incentives align with holistic patient care. Finally, quality indicators for palliative care must be held in equal regard to cancer-focused metrics. We commend early efforts in this area, particularly the emphasis on patient-reported outcomes, as a step toward recognizing the essential role of quality in health care delivery.

Larger changes in the health system are required for these guidelines to become reality in the long run. First, fiscal policy influences clinical practice. Currently, most ambulatory SPC is provided within academic health centers and are financially supported by the oncology program. Health care funding must be changed to promote the financial sustainability of inter-disciplinary, nonprocedural specialty palliative care.

Second, educational policy needs to require, at both undergraduate and graduate levels, training in palliative care for all clinical specialties. Given the workforce shortages, innovation in mid-career fellowship training and financial support for more fellowships is needed. All clinicians, for example, are required to be trained in basic life support in the hospital but few are required to learn how to talk about serious illness with patients and their families.

Third, state and federal regulations need to prioritize palliative care domains. For example, regulatory agencies could require access to SPC as a condition for accreditation for hospitals, medical homes, and other locations that care for seriously ill patients. Currently, there are no performance goals to incentivize cancer centers to provide timely access to palliative care for patients or to ensure their symptoms are well treated. This is not a quality metric included in Joint Commission standards. It is hard to see how we can make progress toward the goals set out in these guidelines without enforceable performance goals.

For these regulations to have an impact, increased public health funding and national policies must be developed that support the field's growth. For example, inpatient palliative care has been associated with cost savings for health systems.^{43, 44} As a result, palliative care resources are often concentrated in inpatient settings where the financial benefits to the system are greatest. However, the strongest evidence for improving patient-reported outcomes comes from early outpatient palliative care, highlighting a misalignment between where resources are allocated and where patient benefits are most pronounced. In 2022, President Biden announced a reboot of the “Cancer Moonshot” White House initiative with ambitious goals to reduce the cancer death rate by at least 50% over the next 25 years and improve the experience of living with and surviving cancer.⁴⁵ Palliative care is not included in this policy. Palliative care has a huge role to play in improving the experience of people living with cancer and national policies like The Cancer Moonshot need to reflect this.

Payers also have an important role in expanding access to SPC and supporting the broader domain of PC by shifting toward financial models that incentivize patient-centered comprehensive care. This may be financially advantageous to payers concerning SPC, which has been associated with decreased overall health care costs. Promoting PC more broadly and tying payments to quality-of-life outcomes may be more challenging as it requires a shift of focus from short-term savings to long-term patient well-being. One effective approach could be the bundling of services—integrating PC with PROs within a single payment structure. This would ensure patient quality of life and outcomes are prioritized, while reducing administrative burdens. Practices willing to invest in infrastructure and care teams for SPC could receive upfront payments or higher reimbursements that would encourage the adoption of these services. Additionally, value-based payment models, which tie reimbursement to quality metrics such as patient satisfaction and end-of-life care outcomes, offer further opportunities for sustainable PC delivery.

Research to determine the most effective form of specialty palliative care is needed to ultimately improve patient outcomes. Many palliative care studies are limited by poor recruitment and lack of adequate funding. Creating the infrastructure to run palliative oncology trials is costly and not feasible in even well-resourced centers. Although research is needed in all of the topics highlighted by the ASCO guidelines, the call to action should be for the prioritization of palliative care research as equivalent to cancer treatment research. As mentioned previously, study interventions need to be practical and implementable on a large scale and in settings where most patients receive their cancer care. Developing and testing implementation strategies is crucial to increasing the number of patients with cancer receiving timely palliative care.⁴⁶ As highlighted in the ASCO Guidelines and the associated commentary by Rosa et al.,⁴⁷ much of the data used to formulate recommendations are drawn from trials that often exclude minoritized populations or underreport their outcomes and strategies to address this are needed. To bridge these gaps, stakeholders, including research funders and scientific journals, need to be held accountable for mandating inclusive trial designs and reporting. Guidelines can only be as inclusive as the data that inform them. Therefore, prioritizing research that involves a diverse set of participants, and that takes into account the specific needs of marginalized populations, is essential to achieving more equitable outcomes in palliative care delivery.

Repeating the same actions while expecting different outcomes rarely leads to meaningful change or progress, despite the best intentions. The 2016 guidelines were ambitious, yet 8 years later, even the most well-resourced cancer centers in the nation struggle to adhere to them. The 2024 guidelines, similarly aspirational, risk falling short without systemic solutions to support their implementation. Ensuring access to palliative care for patients with cancer requires both political and institutional commitment. We hope this conversation intensifies as the nation continues to grapple with providing high value, equitable, and person-centered care for patients with cancer.

Fionnuala Crowley: Conceptualization, writing–original draft, writing–review and editing, and resources. Cardinale B. Smith: Writing–review and editing, supervision, and conceptualization. Robert M. Arnold: Conceptualization, writing–review and editing, and supervision. Debora Afezolli: Conceptualization, writing–review and editing, and supervision.

Fionnuala Crowley reports consulting fees from the International Association for the Study of Lung Cancer (IASLC). Cardinale B. Smith is on the advisory committee to Elevance Health and has received speakers fees from GlaxoSmithKline. Robert M. Arnold is a non-reimbursed board member for VitalTalk and receives royalties as an editor for Up-To-Date. Debora Afezolli declares no conflicts of interest.