Patients with advanced cancer: when, why, and how to refer to palliative care services

Special Article


Patients with advanced cancer: when, why, and how to refer to palliative care services


C. Courteau, MD*, G. Chaput, BA, MD, MA, CAC(Pall Med), L. Musgrave, MD, A. Khadoury, MD, CAC(Pall Med)



doi: http://dx.doi.org/10.3747/co.25.4453


ABSTRACT

Palliative care (pc) is a fundamental component of the cancer care trajectory. Its primary focus is on “the quality of life of people who have a life-threatening illness, and includes pain and symptom management, skilled psychosocial, emotional and spiritual support” to patients and loved ones. Palliative care includes, but is not limited to, end-of-life care. The benefits of early introduction of pc services in the care trajectory of patients with advanced cancer are well known, as indicated by improved quality of life, satisfaction with care, and a potential for increased survival. In turn, early referral of patients with advanced cancer to pc services is strongly recommended.

So when, how, and why should patients with advanced cancer be referred to pc services? In this article, we summarize evidence to address these questions about early pc referral:

  • ▪ What are the known benefits?

  • ▪ What is the “ideal” pc referral timing?

  • ▪ What are the barriers?

  • ▪ Which strategies can optimize integration of pc into oncology care?

  • ▪ Which communication tools can facilitate skillful introduction of pc to patients?

KEYWORDS: Palliative care referral, benefits, advanced cancer, communication skills

INTRODUCTION

Palliative care (pc) focuses on “the quality of life of people who have a life-threatening illness, and includes symptom management, skilled psychosocial and spiritual support” to patients and loved ones1. Palliative care has been found to enhance quality of life and satisfaction with care for patients with advanced cancer, to reduce chemotherapy use near the end of life, and potentially to increase survival25. Nonetheless, suboptimal pc referral remains a barrier to high-quality care in advanced cancer6. An authoritative report stated that two thirds of patients requiring pc services accessed them only during their final hospitalization6. Given its associated benefits2,3, early pc referral for patients with advanced cancer is strongly recommended7.

In this article, we address these questions about pc referral:

  • ▪ What are the known benefits?

  • ▪ What is the “ideal” pc referral timing?

  • ▪ What are the barriers?

  • ▪ Which strategies can optimize integration of pc into oncology care?

  • ▪ Which communication tools can facilitate skillful introduction of pc to patients?

QUESTIONS ABOUT EARLY PC REFERRAL

Benefits

The exponential advances made in cancer treatment do not appear to have been matched by equivalent advances in supportive interventions, leaving patients with greater psychological and physical symptom burdens from their cancer therapies8.

Oncologists likely feel genuine concern for the psychological well-being of their patients, but findings suggest that they lack the time to comprehensively screen for distress9. Early integration of pc might not only improve physical symptom control, but also enhance psychological health5,10. Early referral to pc for patients with advanced cancer has also been associated with enhanced quality of life by increasing the patient’s understanding of their disease and anticipated prognosis, and facilitating coping and advance care planning1113. Moreover, a recent report from the Canadian Partnership Against Cancer indicated that nearly 1 in 4 cancer patients experience 2 or more hospital admissions in the last 4 weeks of life, suggesting a need for an improved process of referral to pc services6. Evidence has shown that early pc referral is associated with decreased use of chemotherapy and fewer hospitalizations near the end of life4,12. Worthy of mention is that fact that no harmful outcomes have been identified from early involvement of the pc team7. Integration of interdisciplinary pc services into the routine oncologic care of patients with advanced cancer is therefore recommended7.

“Ideal” PC Referral Timing

Several variables have been used to determine the most opportune time to refer patients to pc services, including cancer trajectory, disease extent, response to treatment or lack thereof, and anticipated prognosis.

With respect to cancer trajectory, the World Health Organization describes pc as “applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life”14. Being poorly defined, the term “early” can lead to differences in interpretation about when pc referral is warranted. Similarly, considerable variation in the definition of the term “early” has been described, ranging from time of diagnosis of advanced disease, to shortly after or upon failure or discontinuation of curative treatments, to the period just before expected death (in months)1518. Those variations could contribute to delays in the more prompt integration of pc services into patient care.

Another described marker for pc referral is disease extent. The U.S. National Cancer Institute defines advanced cancer as “cancer that has spread to other places in the body and usually cannot be cured or controlled with treatment”19. That definition has its limitations, in that certain malignancies (such as brain cancers) are associated with poor prognosis even in the absence of distant metastases. Likewise, given that decreased rates of aggressive treatment have been reported to be a benefit of early pc referral, the use of treatment failure or discontinuation as a referral criterion appears to be unsuitable.

Lastly, estimating the prognosis of cancer patients can be an imprecise and ambiguous process, with clinicians tending to overestimate survival20. Making use of anticipated prognosis such as “less than 3 months” as an indicator for pc referral is therefore unreliable. The American Society of Clinical Oncology’s recently published guideline about the integration of palliative care into standard oncology care recommends that “inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment”7. Referral to pc for patients with advanced cancer should therefore occur as early as possible in the cancer trajectory, rather than be reserved until the last days of life.

Barriers

In addition to heterogeneity in pc delivery models3,21,22, specific patient-flow obstacles have been described as barriers to pc referral. Those obstacles include lack of referral criteria and clearly defined timing for pc referrals23,24.

Palliative care is a unique field, in that referrals are seldom based on objective criteria—contrary to, for example, an identified gastrointestinal bleed as a clear criterion for gastroenterology consultation. Rather, pc referrals are heavily influenced by patient needs24. Although anticipated short prognosis has been reported to be an objective pc referral criterion, it has evident flaws, given that patients are often referred too late in the course of their illness25. Health provider–related obstacles have also been identified as barriers to pc referral. Those obstacles include the perception that pc is a service that exclusively provides end-of-life care26 and a disinclination on the part of oncologists and other professionals to refer patients to pc27. Moreover, physician reluctance to engage in discussions about expected prognosis with patients also contributes to delayed pc referral26.

In addition to end-of-life care, pc provides a wide array of services, including cancer treatment–related symptom management and psychosocial interventions, which have been shown to benefit patients and family members alike2,28,29. Further educational initiatives targeting oncologists and cancer care professionals are therefore urgently needed and show promise in optimizing access to pc services for patients27,30.

Strategies

Creating standardized referral pathways, classifying oncology patients into “low versus high” categories with respect to symptom burden, and adopting an integrated cancer care delivery model have been proposed as strategies to improve referral to pc services for patients. The establishment of standardized pc referral pathways to optimize patient flow has been widely recommended23,24,31. Hui et al.24 identified the following 6 recurrent pc referral criteria as benchmarks toward the development of standardized referral pathways: physical symptoms, disease trajectory, prognosis, performance status, psychosocial distress, and end-of-life care planning. Advocacy for clearly defined pc referral criteria as a means to facilitate objective assessment of programs and to guide policymaking has been described24. Referral guidelines should take into consideration specific characteristics, given that recent studies have highlighted benefits of pc referral based on the patient’s cancer type, sex, and age9,32. Lastly, for the referral pathways to be effective, routine and seriated evaluations of the patient’s symptoms and consideration for their disease course appear to be of paramount importance23,31.

Moreover, categorizing individuals as either low- or high-burden patients could be another strategy for referring patients to pc services when the existing infrastructure might not be capable of receiving universal early pc referrals33. “High-burden patients” [those experiencing treatment failure, physical or emotional distress (or both), and interpersonal conflicts] might benefit most from early pc involvement and could therefore be prioritized for referral33,34. However, caution should be exercised when attempting to categorize patients in such a manner, given that “high-burden, low-burden” criteria would fail to identify patients with earlier-stage cancer requiring a referral to pc services22.

Lastly, integrated cancer care models appear most promising in introducing pc services early in the disease trajectory. Bruera and Hui34 described three conceptual models to optimize integration of pc services in oncology care: the oncologist solo-practice model, in which the oncologist attempts to deliver the entirety of cancer management, including supportive and palliative interventions; the congress practice model, in which several consultants are independently involved in a patient’s care and which is associated with risks of costly and fragmented care; and the integrated care model, in which oncologists involve pc teams early on to collaborate closely in patient care. The integrated care model allows for the simultaneous delivery of cancer treatments and optimal management of cancer-related symptoms and problems, which are both essential and complementary to comprehensive cancer care. However, implementation of the integrated care model into the clinical setting can be limited should its adoption by the referring physicians be suboptimal34. Given that pc is a critical component of care that focuses on quality-of-life concerns and care-goal preferences, all efforts should therefore be made to integrate outpatient and inpatient pc services into traditional oncology care7.

Communication Tools

Given the nature of their profession, physicians are routinely tasked with disclosing unfavourable health information to patients35. Disclosing bad news can be a demanding responsibility, particularly in cases in which treatment options are limited or no longer available36. Oncology providers often have apprehensions about discussing pc referral with their patients, because they fear that such referral might be perceived as a sign of hopelessness or might cause depression37. Nonetheless, professional ethics and legal obligations oblige physicians to inform patients about any information they request about their disease, treatment plan, and prognosis. Moreover, providing accurate information about prognosis and care plans to patients, whether positive or negative, does not influence hope in patients with advanced cancer37. On the contrary, evidence has shown a patient preference to be informed about their anticipated prognosis37, and that awareness of prognosis is associated with improved coping and future planning, and increased trust and satisfaction with care1820. That said, the manner and ways in which difficult news is related to patients are of critical significance. To skillfully introduce pc to patients, the application of communication tools such as the use of metaphors and communication models can be helpful in guiding difficult conversations associated with pc referrals.

Core communication tactics such as empathic words and active listening can be supplemented with metaphors to facilitate end-of-life conversations38. When initiating a conversation about pc service referral with a patient, the “taking a road trip” metaphor can be helpful (Figure 1). In the metaphor, the cancer trajectory is compared to taking a road trip, and the goal is to arrive at destination—that is, to treat the cancer. Some drivers focus solely on arriving at their destination and do not preoccupy themselves with comfort and safety features such as the seatbelt, spare tire, or seat cushion. Other drivers benefit from those features along the ride, such that they can get to their destination in a safer, more comfortable manner. Drivers who opt for the comfort and safety features are better equipped to pursue their goals. Similarly, pc teams can provide physical and psychosocial symptom control by acting as a cushion to help patients throughout their cancer journey. Palliative care services can be compared to robust roadside assistance program that provides security during a road trip38. When skillfully used, the metaphor can enhance a patient’s understanding and guide future care planning38.

 


 

FIGURE 1 Goals for the use of a car are analogous to goals of care. (A) No comfort and safety measures. (B) Comfort and safety measures. Reprinted from Bruera and Hui, 201039, with permission

Another communication tool useful for facilitating the introduction of pc to patients is the brief and practical spikes model for breaking bad news40. The spikes model has four goals: first, to collect information determining the patient’s understanding, expectations, and readiness to receive difficult news; second, to give simplified and clear information in keeping with the patient’s preferences; third, to acknowledge and support the patient’s emotional reactions to the news; and fourth, to formulate a care plan in a joint effort with the patient40. Those goals can be attained by realizing the 6 steps of the spikes model, which are setting up the interview, assessing the patient’s perception, obtaining the patient’s invitation, giving knowledge and information to the patient, addressing the patient’s emotions with empathic responses, and strategizing and summarizing40. In addition to those 6 steps, we propose the inclusion of a final step called “self-care,” because difficult conversations are often described as distressing and unsatisfying by physicians41. Engaging in “self-care” measures such as mindful meditation and reflective writing can be helpful in managing difficult conversations and could help to prevent compassion burnout42. Table I presents a proposed modified spikess model, which can be applied in clinical settings when engaging in discussions about disease progression, which often precede the referral of patients with advanced cancer to pc services.

TABLE I Modified SPIKESS model for referring patients to palliative care40,a

 

SUMMARY

Palliative care services extend beyond end-of-life care. Essential elements of pc include screening for and managing cancer-related symptoms, providing psychosocial care to patients and loved ones, providing education and support with respect to cancer and the patient’s anticipated prognosis, and assisting in medical decision-making and advance care planning. Patients with advanced cancer should be referred to pc teams early in the course of their disease and should receive inpatient or outpatient pc services in conjunction with their usual oncologic care.

Key Points
  • ▪ Early referral of patients with advanced cancer to pc services is recommended.

  • ▪ Involvement of pc might improve symptom control and quality of life for patients.

  • ▪ The use of brief communication tools can facilitate discussions when referring patients to pc services.

ACKNOWLEDGMENTS

The authors give their heartfelt thanks to Tristan Williams for the formatting and final preparation of this manuscript.

CONFLICT OF INTEREST DISCLOSURES

We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and we declare that we have none.

AUTHOR AFFILIATIONS

*Department of Family Medicine, McGill University, Montreal, QC,
Division of Supportive and Palliative Medicine, Royal Victoria Hospital of the McGill University Health Centre, Montreal, QC,
Department of Palliative Care, Lachine Hospital Campus of the McGill University Health Centre, Lachine, QC.

REFERENCES

1 Canadian Cancer Society. Palliative Care [Web page]. Toronto, ON: Canadian Cancer Society; n.d. [Available at: http://www.cancer.ca/en/get-involved/take-action/what-we-aredoing/palliative-care/?region=on; cited 3 August 2018]

2 Bakitas MA, Tosteson TD, Li Z, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the enable iii randomized controlled trial. J Clin Oncol 2015;33:1438–45.
cross-ref  pubmed  pmc  

3 Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet 2014;383:1721–30.
cross-ref  pubmed  

4 Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol 2012;30:394–400.
cross-ref  

5 Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733–42.
cross-ref  pubmed  

6 Canadian Partnership Against Cancer (cpac). Palliative and End-of-Life Care. Toronto, ON: cpac; 2017. [Downloadable from: http://www.systemperformance.ca/report/palliative-end-of-life-care/; cited 8 April 2018]

7 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.
cross-ref  

8 Abernethy AP, Aziz NM, Basch E, et al. A strategy to advance the evidence base in palliative medicine: formation of a palliative care research cooperative group. J Palliat Med 2010;13:1407–1413.
cross-ref  pubmed  pmc  

9 Pirl WF, Muriel A, Hwang V, et al. Screening for psychosocial distress: a national survey of oncologists. J Support Oncol 2007;5:499–504.

10 Haun MW, Estel S, Rucker G, et al. Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev 2017;6:CD011129.
pubmed  

11 Bagcivan G, Dionne-Odom JN, Frost J, et al. What happens during early outpatient palliative care consultations for persons with newly diagnosed advanced cancer? A qualitative analysis of provider documentation. Palliat Med 2018;32:59–68.
cross-ref  

12 Hoerger M, Greer JA, Jackson VA, et al. Defining the elements of early palliative care that are associated with patient-reported outcomes and the delivery of end-of-life care. J Clin Oncol 2018;36:1096–102.
cross-ref  pubmed  pmc  

13 Temel JS, Greer JA, Admane S, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol 2011;29:2319–26.
cross-ref  pubmed  

14 World Health Organization (who). WHO Definition of Palliative Care [Web page]. Geneva, Switzerland: who; n.d. [Available at: http://www.who.int/cancer/palliative/definition/en/; cited 6 May 2018]

15 Hui D, Kim SH, Roquemore J, Dev R, Chisholm G, Bruera E. Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients. Cancer 2014;120:1743–9.
cross-ref  pubmed  pmc  

16 Temel JS, Greer JA, El-Jawahri A, et al. Effects of early integrated palliative care in patients with lung and gi cancer: a randomized clinical trial. J Clin Oncol 2017;35:834–41.
cross-ref  

17 Rugno FC, Paiva BS, Paiva CE. Early integration of palliative care facilitates the discontinuation of anticancer treatment in women with advanced breast or gynecologic cancers. Gynecol Oncol 2014;135:249–54.
cross-ref  pubmed  

18 Yoong J, Park ER, Greer JA, et al. Early palliative care in advanced lung cancer: a qualitative study. JAMA Intern Med 2013;173:283–90.
cross-ref  pubmed  

19 United States, Department of Health and Human Services, National Institutes of Health, National Cancer Institute (NCI). NCI Dictionary of Cancer Terms: Advanced Cancer [Web resource]. Bethesda, MD: nci; n.d. [Available at: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/advanced-cancer; cited 4 April 2018]

20 Hui D. Prognostication of survival in patients with advanced cancer: predicting the unpredictable? Cancer Control 2015;22:489–97.
cross-ref  pubmed  pmc  

21 Grudzen CR, Richardson LD, Johnson PN, et al. Emergency department–initiated palliative care in advanced cancer: a randomized clinical trial. JAMA Oncol 2016;:[Epub ahead of print].
cross-ref  

22 Ferrell B, Sun V, Hurria A, et al. Interdisciplinary palliative care for patients with lung cancer. J Pain Symptom Manage 2015;50:758–67.
cross-ref  pubmed  pmc  

23 den Herder-van der Eerden M, van Wijngaarden J, Payne S, et al. Integrated palliative care is about professional networking rather than standardisation of care: a qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries. Palliat Med 2018;32:1091–102.
cross-ref  pubmed  pmc  

24 Hui D, Meng YC, Bruera S, et al. Referral criteria for outpatient palliative cancer care: a systematic review. Oncologist 2016;21:895–901.
cross-ref  pubmed  pmc  

25 LeBlanc TW, El-Jawahri A. When and why should patients with hematologic malignancies see a palliative care specialist? Hematology Am Soc Hematol Educ Program 2015;2015:471–8.
cross-ref  pubmed  

26 Gaertner J, Maier BO, Radbruch L. Resource allocation issues concerning early palliative care. Ann Palliat Med 2015;4:156–61.
pubmed  

27 Dalgaard KM, Bergenholtz H, Nielsen ME, Timm H. Early integration of palliative care in hospitals: a systematic review on methods, barriers, and outcome. Palliat Support Care 2014;12:495–513.
cross-ref  pubmed  

28 Sun V, Grant M, Koczywas M, et al. Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer. Cancer 2015;121:3737–45.
cross-ref  pubmed  pmc  

29 Dionne-Odom JN, Azuero A, Lyons KD, et al. Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the enable iii randomized controlled trial. J Clin Oncol 2015;33:1446–52.
cross-ref  pubmed  pmc  

30 Hannon B, Swami N, Pope A, et al. Early palliative care and its role in oncology: a qualitative study. Oncologist 2016;21:1387–95.
cross-ref  pubmed  pmc  

31 Kaasa S, Knudsen AK, Lundeby T, Loge JH. Integration between oncology and palliative care: a plan for the next decade? Tumori 2017;103:1–8.
cross-ref  pubmed  

32 Nipp RD, Greer JA, El-Jawahri A, et al. Age and gender moderate the impact of early palliative care in metastatic non–small cell lung cancer. Oncologist 2016;21:119–26.
cross-ref  

33 Bruera E, Yennurajalingam S. Palliative care in advanced cancer patients: how and when? Oncologist 2012;17:267–73.
cross-ref  pubmed  pmc  

34 Bruera E, Hui D. Conceptual models for integrating palliative care at cancer centers. J Palliat Med 2012;15:1261–9.
cross-ref  pubmed  pmc  

35 Fallowfield L, Lipkin M, Hall A. Teaching senior oncologists communication skills: results from phase i of a comprehensive longitudinal program in the United Kingdom. J Clin Oncol 1998;16:1961–8.
cross-ref  pubmed  

36 Ptacek JT, Eberhardt TL. Breaking bad news. A review of the literature. JAMA 1996;276:496–502.
cross-ref  pubmed  

37 Mack JW, Smith TJ. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol 2012;30:2715–17.
cross-ref  pubmed  

38 Hui D, Zhukovsky DS, Bruera E. Serious illness conversations: paving the road with metaphors. Oncologist 2018;23:730–3.
cross-ref  pubmed  pmc  

39 Bruera E, Hui D. Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol 2010;28:4013–17.
cross-ref  pubmed  

40 Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. spikes—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000;5:302–11.
cross-ref  

41 Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet 2004;363:312–19.
cross-ref  pubmed  

42 Kearney MK, Weininger RB, Vachon MLS, Harrison RL, Mount BM. Self-care of physicians caring for patients at the end of life: “Being connected... a key to my survival.” JAMA 2009;301:1155–64.
cross-ref  


Correspondence to: Genevieve Chaput, McGill University Health Centre, Lachine Hospital Campus, 650 16th Avenue, Lachine, Quebec H8S 3N5. E-mail: genevieve.chaput@mail.mcgill.ca

(Return to Top)


This series is brought to you in partnership with the Canadian Association of General Practitioners in Oncology.


Current Oncology, VOLUME 25, NUMBER 6, DECEMBER 2018








Copyright © 2019 Multimed Inc.
ISSN: 1198-0052 (Print) ISSN: 1718-7729 (Online)