DOI: 10.1200/OP.21.00794 JCO Oncology Practice - published online before print December 22, 2021
Why Are We Failing to Do What Works? Musings on Outpatient Palliative Care Integration in Cancer Care
2Division of Hematologic Malignancies and Cellular Therapy, Duke University School of Medicine, Durham, NC
3Duke Cancer Institute, Durham, NC
In their recent study, Yeh et al1 add to the mounting evidence showing a myriad of benefits conferred by outpatient integrated palliative care in oncology. However, despite this clear evidence, we have not achieved widespread palliative care implementation outside of trials. Here, we discuss the barriers to integrated palliative care and provide suggestions for moving forward.
First, we must be clear in our terminology. The term palliative care is often misused and misunderstood as a euphemism for end-of-life care or hospice. Specialty palliative care is also different from the primary palliative care usually provided by the oncology team (eg, basic symptom management and what is often called supportive care).2 In using the term palliative care here, we refer to sophisticated subspecialty care that aims to prevent and relieve suffering by assessment and treatment of physical, spiritual, and psychosocial problems. It is thereby appropriate at any stage of illness and can be provided even alongside curative therapies.3,4
The evidence base supporting outpatient palliative care integration in oncology is robust and began with the publication of the ENABLE II study in 2009. There have since been nearly a dozen of randomized clinical trials demonstrating positive results, including the landmark study by Dr Temel in 2010 and ENABLE III in 2015.5,6 Systematic reviews and meta-analyses, including one that focused exclusively on outpatient palliative care, show that palliative care interventions yield significant improvements in quality of life and symptom burden as well as patient and caregiver satisfaction. It is also associated with improved advance care planning, overall survival, and reduced health care utilization.7,8 Given these findings, ASCO recommends early palliative care as a routine part of comprehensive cancer care, concurrent with active treatment.9 The National Comprehensive Cancer Network (NCCN) and ESMO have released similar guideline recommendations.10,11
Despite the past decade of mounting evidence as to the many benefits of palliative care integration, progress is lagging in real-world settings. In one retrospective study done at a comprehensive cancer center, fewer than half of patients who died with advanced cancer ever saw a palliative care specialist. Referrals also happened late, only 1.4 months before death, with even worse integration in hematologic malignancies.12 Multiple studies corroborate that palliative care access is generally limited and often delayed, even in highly resourced settings.13 Amid this underutilization and underintegration of palliative care, despite compelling efficacy data, one must wonder what is slowing the progress of routine integration.
The barriers to early palliative care referral include challenges related to clinicians, patients, and health care systems. For example, among oncologists, there remain widespread misconceptions about palliative care. These include not knowing about locally available services, thinking that palliative care is incompatible with cancer treatment or even just a euphemism for hospice or end-of-life care, and believing it is their role alone to provide any necessary palliative care.14,15 Since oncologists are the gatekeepers to palliative care referrals, these misperceptions markedly reduce or delay referrals.
Once an oncologist recognizes the need for a palliative care referral, the next set of barriers are on the patient and family or caregiver side. Many patients simply do not know what palliative care is and do not recognize the value of seeing another specialist.16 This knowledge gap is often compounded by similar misperceptions among some laypersons that seeing palliative care is a collusion of hope and equivalent to giving up.17 Like oncologists, patients may have more favorable impressions of the term supportive care.18,19 There are also logistic barriers to seeing palliative care, including more appointments and copayments. And because palliative care clinics are under-resourced, they may only operate on certain days/locations, requiring multiple or extra trips for these appointments.17
If a patient accepts the recommendation for palliative care referral, there are also palliative care workforce barriers at play. There are simply not enough palliative care specialists available to deliver all the services required by patients with cancer. A survey of NCCN member institutions revealed that although most had an outpatient palliative care clinic, 80% felt they did not have the staffing to meet the demands for palliative care.20 As the demand continues to grow, multiple models predict an increasing workforce shortage.21,22
Considering these issues at the level of health care systems, only 59% of National Cancer Institute (NCI) cancer centers and 22% of non-NCI centers even have an outpatient palliative care clinic. There is also variability in the scope of services and degree of integration with these palliative care programs.23 The Center to Advance Palliative Care tracks palliative care programs across the country and has shown that there remain large swaths of the country that cannot provide community-based palliative care. Barriers to developing robust clinics include poor reimbursement and limited institutional resources, in addition to the workforce issues described above.24,25
Each of these barriers must be addressed if we are to make meaningful progress. Work is needed at individual and institutional levels, locally, and on a national level. For example, given the wide misperceptions about palliative care, there must be systematic educational efforts among clinicians and laypersons alike to clarify the role of this specialty in improving the lives of patients and caregivers. While rebranding the term palliative care to supportive care may create a more favorable environment locally for oncologists to refer, and for some patients to accept the referral, this approach circumvents misconceptions and does not address them.18,19,26 Oncologists can benefit from education that helps them separate palliative care from hospice; this includes equipping oncologists with the language needed to introduce palliative care accurately and appropriately to patients. Oncology fellows who complete a palliative care rotation are more likely to refer to palliative care early; rotation in palliative care should become standard in oncology training and vice versa.27 Integration must also happen beyond just a patient's clinical care; evidence supports integration of palliative care into multidisciplinary tumor boards, joint oncology-palliative care grand rounds, and increased collaboration in research.28
The current palliative care integration model relies on oncologists to recognize unmet needs and then refer patients and thus is doomed to fail amid incomplete understanding of palliative care and its benefits. A better system would trigger referrals on the basis of standard criteria via objective assessments of unmet needs. There are many potential ways to achieve this, as we have previously described.29 One can develop an automatic referral system, for example, triggered by unmet needs identified using validated symptom screening tools, such as the Distress Thermometer and Edmonton Symptom Assessment System, or even on the basis of diagnosis and prognosis.30-32 These unmet needs may include uncontrolled severe physical or emotional symptoms, moderate to severe distress, spiritual or existential crisis, need for assistance with decision making or care planning, and patient or family request.9,10,33 However, such a system requires institutional buy-in, implementation of a screening and referral schema, and a palliative care workforce that can meet the demand. This is not currently possible in many local contexts.
Similarly, the palliative care workforce shortage must be addressed by increasing funding for palliative care training positions and enhanced training of clinicians in primary palliative care skills. Support is also needed to develop a more robust outpatient clinic infrastructure at most centers. Moving to a value-based care model, as opposed to the current fee-for-service payment model, may incentivize this.
Importantly, legislation such as the Palliative Care and Hospice Education Training Act (PCHETA) addresses many of these barriers by aiming to increase the training of palliative care specialists, incentivize a career in palliative care, launch an educational and awareness campaign nationally, and enhance research. This type of legislation is necessary to address the foundational barriers that cannot be solved by individuals or even health care system, but it has yet to be passed.
In conclusion, outpatient-integrated palliative care clearly improves outcomes for patients with cancer. Yeh et al1 add more evidence about these benefits. It is tragic that despite over a decade of evidence and society guideline recommendations, we are still failing to provide what we know is a helpful service for patients and families. We must do better. We must educate ourselves, our colleagues, and our patients; create more robust processes for needs-based referrals; support improved clinical infrastructure; and advocate for legislation such as PCHETA.
See accompanying article on page 291
Conception and design: All authors
Manuscript writing: All authors
Final approval of manuscript: All authors
Accountable for all aspects of the work: All authors
The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.
Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).
Thomas W. LeBlanc
Honoraria: Abbvie, Astellas Pharma
Consulting or Advisory Role: Seattle Genetics, Pfizer, AbbVie/Genentech, AstraZeneca, Daiichi Sankyo, Bristol Myers Squibb/Celgene, GlaxoSmithKline
Speakers' Bureau: Agios, AbbVie, Bristol Myers Squibb/Celgene
Research Funding: AstraZeneca (Inst), Jazz Pharmaceuticals (Inst), Bristol Myers Squibb (Inst)
Patents, Royalties, Other Intellectual Property: UpToDate Inc, royalty
Travel, Accommodations, Expenses: Agios, AbbVie/Genentech, Bristol Myers Squibb/Celgene
No other potential conflicts of interest were reported.
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