Palliative care in oncology at a time of extreme global health inequalities and over-stretched resources: contextualizing the ASCO Palliative Care for Patients with Cancer Guideline Update

The American Society of Clinical Oncology (ASCO) recently published their ‘Palliative Care for Patients With Cancer: ASCO Guideline Update’ (1), which is an update to their best practice guideline integrating palliative care into standard oncology for patients diagnosed with cancer (2). In this update, new recommendations are introduced as well as the augmentation of longstanding guidelines.

Effective palliative care to support palliative patients and improve their quality of life (QoL) has never been so important, as the World Health Organisation (WHO) predicts that global cancer burden will increase by approximately 77% by 2050 from the estimated 20 million new cases of cancer and 9.7 million deaths from cancer reported in 2022 (3). It is further estimated that within the next decade three quarters of all patients with cancer and cancer-related deaths will be in low and middle-income countries (LMICs) (4).

In 2014, the World Health Assembly approved a resolution “Strengthening of Palliative Care as a Component of Comprehensive Care throughout the Life Course” that included policies for palliative care within the oncology setting (5). However, today, at the tenth anniversary of this resolution, there is still limited implementation in LMICs due to challenges, including access to medicines, access to palliative care through primary care, and access to healthcare without financial burden to patients (6).

Palliative care guidelines have been created mainly by high-income Western countries that already have established palliative care pathways. Development of more applicable local guidelines in LMICs faces challenges due to a deficit in funding and physical resources, lack of palliative care training for wider healthcare personnel, staff and volunteer retention, cultural/social barriers, and health policies that focus on curative treatment rather than holistic care (7). The ASCO Guideline Update identified 52 randomised controlled trials (RCTs) and one systematic review to inform the new recommendations, with only four of these providing evidence from LMICs (1).

The Worldwide Hospice Palliative Care Alliance and WHO Global Atlas of Palliative Care have identified policy, education, medicine availability, health workforce, psychological, social, cultural, and finance as the key barriers to palliative care (8). Government policy is key in the development of local palliative care strategies, and in some countries where there is no such provision, even charitable organisations may be prohibited from acting without government permission (8). A lack of such policies can prevent the inclusion of palliative care in the health budgets of LMICs (9). This, in turn, creates an additional barrier for effective palliative care implementation, even when novel solutions are created.

Complete palliative care that is truly holistic requires input from multidisciplinary teams as described above, depending on the individual patient’s needs. For all cancers, input from interdisciplinary palliative care teams from an early point with both inpatient and outpatient care could be considered a “gold standard” for health providers and policy makers to work towards, and ASCO recognises the challenges in the implementation of the guidelines, particularly within LMICs. Cancer treatment pathways in some LMICs are controlled by the oncologist, who determine which patients are referred to palliative care. Depending on the healthcare system, there can be fear of losing income when a patient is referred to the palliative care team, and the oncologist may refer only when they have overwhelming symptoms or never refer at all. Patients themselves may be reluctant to be referred to palliative care early on, whether from concerns of being labelled a “palliative patient” or associating it with end-of-life care. In all countries, there is a need for continued education of the public and healthcare professionals about the role of palliative care and to demystify the stigma around it.

The strongest recommendation in the updated ASCO guideline states that “Clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide inpatient and outpatient care early in the course of disease, alongside active treatment of their cancer”, which is unchanged from the 2016 guidance except for the distinction between solid tumours and haematological malignancies (1,2). Specification of haematological malignancies have traditionally been underrepresented in palliative oncology guidelines. However, patients with haematological malignancies were found to have more intense cancer treatments resulting in significant side-effects, multiple and longer hospital admissions, and more in-hospital deaths (1,9). Yet these treatments have a greater potential for cure, therefore side effects need to be managed with this in mind. Furthermore, there may be longer term side effects in some patients expected to live for many years, and the psychological impact of this is underestimated (9). Palliative care has a key role in symptom control in haematological patients being treated with curative intent and, as with solid tumours, there remain traditional barriers around palliative care only being applicable to patients nearing end-of-life.

A further recommendation that “Among patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services to complement existing or emerging supportive care interventions” (1) builds upon the 2016 recommendations that palliative care should work in harmony with other support networks such as geriatric care, social care and mental health services (2). It is recommended that patients with specific unmet needs should have access to the appropriate professionals, whether that be a physician, specialist nurse, psychologist, rehabilitation specialist, spiritual care provider, or specialised navigator, and this should be available within a healthcare setting, in the community, and online/via telehealth where available (1). Again, this could be seen as a “gold standard” to aspire to, and there will be challenges in its implementation due to funding, accessibility, service availability and possibly cultural/religious barriers.

Once implemented, recommendations must be sustainable over the long term. As people live longer with cancer and metastatic disease, and face side effects from a growing range of treatments, palliative care services must be resilient to meet rising demand. Even in high-income countries, healthcare budgets are increasingly tight, with high service expectations despite limited resources.

In LMICs, nurses are often the primary health provider, especially in remote rural communities (9). The majority of these nurses have limited knowledge in palliative care and where resources are scarce funding will not be prioritised in palliative care, especially if it is still viewed as for end of life. Clinics may be limited to urban areas, making their location not accessible to those in remote areas without the transport or funds to travel, or for caregivers to stop working and travel to take the patient to a facility for care. Patients admitted to a clinic may have to be left there alone, including children, without the psychological support of a family member/caregiver. Therefore, a difficult choice is often required on whether to remain at home with limited intervention or travel far from home and family to receive care in a clinic.

Education for healthcare professionals is key in bridging the gap where accessibility and resources are limited. In LMICs where allied health professionals, chiefly nurses, are those responsible for palliative care in the community, further education and training specific to specialised palliative care is recommended. A positive example of this has been seen in Nairobi, Kenya where nursing degrees have successfully included palliative care modules for this reason, covering pain and symptom management, ethical and legal issues, cultural and spiritual considerations and bereavement counselling (10).

In some rural and remote communities, training of family caregivers with the support of mobile palliative teams has been found to fill a crucial gap where resources are scarce and difficult to access. An example of this has been shown in Kazakhstan, where there is an estimated 107,000 people currently requiring palliative care services, and only 45 physicians and 101 nurses serving 1,925 palliative care beds (11). Family caregivers are key providers of palliative support for patients both at home and as inpatients, however they do not have the knowledge or practical skills required to do this effectively or safely (11). Nursing staff often instruct the caregivers on basic procedures if they attend a hospital, however patients are often reluctant to remain in hospital as their family caregiver would not be able to maintain work to support the family if they had to continue to travel long distances to reach them (11). Basic but formal training for family caregivers in aspects of palliative care, for example, in symptom management, with guidance from mobile teams and online support where available, has proven to be a practical and cost-effective solution (11). The stakeholders within this project found some of the recommended guidelines challenging to implement in Kazakhstan, and prioritisation of limited resources was key to meeting the needs of the population (11). However, some guidelines could be adapted for use in LMICs, such as the use of low-cost medications, and having a basic infrastructure and integrated care systems (11). It is important to now consider the new additions in the updated ASCO guidelines, such as recognizing that patients with haematological malignancies also require palliative care input, and how their needs can be managed within existing systems.

Insufficient supplies of pain medication, including morphine, is a key barrier to effective palliative care in low-income countries such as Kenya (10). It is estimated that 84.25% of the world’s population has insufficient supply of opioid medications for pain control, with LMICs accounting for only 10% of global opioids use (9). Improved access to antiemetic’s, laxatives, antidiarrheals/antispasmodic agents is also vital for symptom control and improved QoL.

Palliative radiotherapy for pain management is widely used to the benefit of patients in high income countries (HICs), but it is beyond the reach of many in LMICs. A 2023 study reported that there are 23 LMICs, with an aggregate population of 197.3 million people, without any active radiotherapy facilities (12). The study reported an aggregate deficit of 188 megavoltage and 85 brachytherapy systems, along with imaging equipment and workforce including over three thousand trained radiation oncology staff (11). Placed in this context, this appears unsurmountable. First-hand experience from Kenya reported that due to lack of treatment protocols and standards most patients are offered ten or more fractions rather than a single or five fractions. Multiple studies and systematic reviews have concluded that a single fraction of radiotherapy is as effective as multiple fractions for palliative radiotherapy for bone metastases (13-15), therefore introducing evidence-based protocols would save radiotherapy resources and spare the patient unnecessary hospital visits. Individual radiotherapy centres in HICs may have redistribution programmes following equipment upgrades, but this is still leaving a huge shortfall in access to effective palliative radiotherapy across the globe. Rather than the current individual efforts, a coordinated global effort between governments, non-governmental organisations, manufacturers and charities need to be established to rectify this extreme global healthcare inequality.

This makes the ideals in the updated ASCO guidelines seem even farther out of reach for such countries, and not just in LMICs. One well-renowned clinical oncologist in the Philippines gave their opinion on the current state of palliative care within oncology to the editorial group. At one private hospital, speciality tumour boards are regularly conducted, yet the pain and palliative care teams are rarely present. Referral to palliative and supportive care is only for cases with distressing pain or other symptoms or very advanced cases, especially where life expectancy is more than three months and long-term symptom management would improve patient comfort and QoL. Referral for these patients should be commended, as there is limited access to palliative care due to financial constraints. Referrals for pain and symptom management are usually deferred, unless patients have refractory symptoms that the multidisciplinary oncology team cannot manage. This can result in patients presenting with acute pain to the emergency room and eventually leading to hospitalisation.

In the experience of the clinical oncologist from the Philippines, effective patient screening programmes that were previously set up to aid patient referrals to pain and palliative care teams have now commonly fallen out of use. This highlights the importance of the sustainability of any new palliative care pathways and processes being implemented. At government-run centres, general tumour boards are held and attended by the Pain and Palliative Unit; however, there is often no existing clinical protocol regarding indications for referring patients to them. Only incurable cases and cases with severe symptoms are referred, and management is subsidized by the public health system.

In general, the responsibility for pain and palliative care should be clearly delineated between the specialties of anaesthesiology and family medicine. Anaesthesiologists have more specific training in the pharmacological management of pain and other symptoms. Family medicine providers are more engaged in patient and family counselling, resource mobilization, and community links. Further, psychiatry providers are often involved where the patient is suffering from clinical depression or mood disorders.

Home-based services are available but uptake is low and limited to capable patients that need chronic care. On a positive note, pain and palliative care speciality training is available in the Philippines, and there is availability of these healthcare professionals, especially in and around the capital. In the other regions, however, there is a lack of pain and palliative care specialists. The main barriers to accessing these pain and palliative care services are financial, and many patients prioritize active cancer management. Greater financial support at all levels, from hospital to home-based caregivers, is required to maintain palliative care pathways and for funding for patients to access care without financial burden, particularly in rural locations.

In 2018, ASCO published a special article “Palliative Care in the Global Setting: ASCO Resource-Stratified Practice Guideline” to support health professionals and politicians in resource-constrained settings in the implementation of their 2016 palliative care guidelines (16). This acknowledged the challenges in implementing the 2016 recommendations by LMICs, particularly as most of the research in the original guidelines was based in high-income western countries. Publications from LMICs and cost-effectiveness analyses were included to create a more applicable tiered system of recommendations, from basic (fundamental, minimal requirements) to maximal (high-resource setting), and ranged from community and primary healthcare to national-level settings (16). This approach provided practical guidance for each ASCO recommendation, allowing flexibility depending on the resources and infrastructure available. It supports the best practices required to increase efficiency of use and prioritisation of the sparse resources available. A similar stratified practice guideline to compliment the 2024 Palliative Care for Patients with Cancer ASCO Guidelines would be a welcome resource to further support LMICs.

Successful adaptation of guidelines for local implementation considering local infrastructure, resources and cultural sensitives has been shown in many LMICs. For example, Hashmi et al. [2024] employed the Grading of Recommendations Assessment, Development and Evaluation (GRADE)-ADOLOPMENT process to adapt National Comprehensive Cancer Network (NCCN) Practice Guideline for Pakistan (17). This process takes well-researched published guidelines, adopts the aspects that are appropriate, adapts those which are not, and excludes those that are not locally relevant (17). This creates local context specific guidelines, which have a basis in robust research, and are more socio-economically feasible to implement (17). A working group was created to grade each recommendation in the National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology Palliative Care Version 2 (18) as either “Adopt”, “Adapt”, or “Exclude” and the outcome developed into the clinical practice guideline for the management of palliative patients for Pakistan (17). The advantage of this system is that locally important cultural and religious factors are taken into consideration, so that the resulting guidelines are more acceptable in their implementation to both healthcare professionals and communities. Challenges faced in the adolopment process included limited financial and staffing resources, methodological limitations, and resistance to change (17).

In conclusion, the 2024 Palliative Care for Patients with Cancer ASCO Guidelines provide a well-researched, evidence-based set of recommendations for healthcare providers and policy makers. As with the previously developed 2018 ASCO stratified practice guideline for palliative care, there could be a stratified practice guideline for palliative care education, which is a similarly tiered system of recommendations. Specialist palliative care professionals could act as coaches to healthcare professionals, to in turn give instruction to non-professional caregivers, ensuring that specialised knowledge is efficiently shared throughout the stratified layers of care. Where there is a lack of specialist palliative care professionals, other healthcare professionals could be trained in palliative care, with a focus on “training the trainer” so that knowledge and skills can be disseminated across communities. In regions where families are the main care givers, training by mobile healthcare teams could be formalised to give carers a consistent and effective level of knowledge and skills. There is a lack of evidence around hospice care in LMICs or the difference in perceptions between hospice and palliative care. This is an important area for future research in LMICs, particularly around education, when resources are already limited and running two separate programs is a further financial strain.

The implementation of the ASCO guidelines will have challenges for not only LMICs but also HICs where healthcare resources are increasingly stretched. It is clear that effective palliative care guidelines require the flexibility to be adapted and implemented as appropriate to each nation and healthcare system, with respect to their resources and unique characteristics. However, the guidelines can be viewed as a gold standard from which to work from, and can inspire novel solutions and adaptations as are already successfully achieved around the globe.

Acknowledgments

We would like to thank all the reviewers for sharing their knowledge and expertise. Along with the editorial team, their contributions allowed the commentary to reflect the multidisciplinary nature of palliative care. In particular, we would like to thank those reviewers from LMICs whose experience was key in identifying the real-world challenges faced by those countries attempting to implement such guidelines.

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine. The article has undergone external peer review.

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-165/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-24-165/coif). S.F.L. serves as an unpaid co-chair for the Palliative Radiotherapy Subcommittee of Annals of Palliative Medicine from October 2023 to September 2025. C.B.S. II, is the Editor-in-Chief of Annals of Palliative Medicine. W.B. is the President of Philippine Society of Oncologists, Inc. E.O. serves as an unpaid member for the Palliative Radiotherapy Subcommittee of Annals of Palliative Medicine from December 2024 to December 2026. 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.

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/.

References

1. Sanders JJ, Temin S, Ghoshal A, et al. Palliative Care for Patients With Cancer: ASCO Guideline Update. J Clin Oncol 2024;42:2336-57. [Crossref] [PubMed]
2. Ferrell BR, Temel JS, Temin S, et al. Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol 2017;35:96-112. [Crossref] [PubMed]
3. International Agency for Research on Cancer. Predictions of the future cancer incidence and mortality burden worldwide up until 2050 [Internet]. 2022 [cited 2024 August 17]. Available online: https://gco.iarc.fr/tomorrow/en
4. Fadelu T, Aziz Z, Temin S, et al. JCO Global Oncology Editorial on Resource-Stratified Guidelines. JCO Glob Oncol 2024;10:e2400184. [Crossref] [PubMed]
5. The World Health Organisation. The Sixty-seventh World Health Assembly, Strengthening of palliative care as a component of comprehensive care throughout the life course. 2014 WHA67.19 Available online: https://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf
6. ICPCN. The seventy-seventh Session of the World Health Assembly. 2024 [Internet]. 2022 [cited 2024 August 17]. Available online: https://icpcn.org/news/palliative-care-at-the-77th-session-of-the-world-health-assembly/
7. Peeler A, Afolabi O, Adcock M, et al. Primary palliative care in low- and middle-income countries: A systematic review and thematic synthesis of the evidence for models and outcomes. Palliat Med 2024;38:776-89. [Crossref] [PubMed]
8. Worldwide Palliative Care Alliance and WHO. Global Atlas of Palliative Care 2nd Edition. London. 2020. Available online: https://www.palliativecare.in/wp-content/uploads/2020/10/Global-Atlas-2nd-Edition-2020.pdf
9. El-Jawahri A, Nelson AM, Gray TF, et al. Palliative and End-of-Life Care for Patients With Hematologic Malignancies. J Clin Oncol 2020;38:944-53. [Crossref] [PubMed]
10. Malloy P, Boit J, Tarus A, et al. Providing Palliative Care to Patients with Cancer: Addressing the Needs in Kenya. Asia Pac J Oncol Nurs 2017;4:45-9. [Crossref] [PubMed]
11. Salikhanov I, Katapodi MC, Kunirova G, et al. Improving palliative care outcomes in remote and rural areas of LMICs through family caregivers: lessons from Kazakhstan. Front Public Health 2023;11:1186107. [Crossref] [PubMed]
12. Christ SM, Willmann J. Measuring Global Inequity in Radiation Therapy: Resource Deficits in Low- and Middle-Income Countries Without Radiation Therapy Facilities. Adv Radiat Oncol 2023;8:101175. [Crossref] [PubMed]
13. Chow R, Hoskin P, Schild SE, et al. Single vs multiple fraction palliative radiation therapy for bone metastases: Cumulative meta-analysis. Radiother Oncol 2019;141:56-61. [Crossref] [PubMed]
14. Tseng YD. Radiation Therapy for Painful Bone Metastases: Fractionation, Recalcification, and Symptom Control. Semin Radiat Oncol 2023;33:139-47. [Crossref] [PubMed]
15. Hirsch B, Bro A, Walker J, et al. Metastatic bone cancer: Consideration for optimal dose fractionation in radiation therapy. J Med Imaging Radiat Sci 2022;53:S39-43. [Crossref] [PubMed]
16. Cleary JF, Osman H, Gafer N, et al. ASCO Guideline report: Palliative Care in the Global Setting—ASCO Resource-Stratified Practice Guideline. J Clin Oncol 2018;36:85. [Crossref]
17. Hashmi SA, Martins RS, Ishtiaq A, et al. Development of palliative care clinical practice guidelines and referral care pathways for primary care practitioners in Pakistan. BMC Palliat Care 2024;23:112. [Crossref] [PubMed]
18. Dans M, Kutner JS, Agarwal R, et al. NCCN Guidelines® Insights: Palliative Care, Version 2.2021. J Natl Compr Canc Netw 2021;19:780-8. [Crossref] [PubMed]