Abstract: The provision of specialty palliative care alongside oncology care is now recommended by the American Society of Clinical Oncology (ASCO) on the basis of multiple randomized trials showing that it leads to better symptom control, less depression and anxiety, improved quality of life, improved caregiver quality of life, and even longer survival. That said, simply not enough palliative care specialists are available to provide concurrent care, so oncologists are tasked with providing the greatest part of primary palliative care. It is useful to think of primary palliative care as comprising 2 skill sets, or “bundles”: the first symptom assessment and management, and the second communication. Symptom assessment begins with the use of a standardized scale that emphasizes the assessment of anxiety, depression, physical symptoms, and coping strategies. Communication requires knowing how much information the patient and family want, especially about prognosis, and involves shared decision making. It also encompasses advance care planning, starting with the identification of a medical power of attorney and proceeding to a discussion about hospice and end-of-life treatment choices. The communication skill set includes providing caregiver support and spiritual care referral, making culturally appropriate decisions, and providing a specific statement of non-abandonment near the end of life. If specialty palliative care is involved, data show that the effect on quality of life and end-of-life choices is most meaningful if consultation is started at least 3 months before death. In this article, we provide a brief overview of the benefits of incorporating palliative care into routine oncologic practice and offer clinical pearls on how best to deliver the tenets of palliative care in the outpatient and inpatient settings.
Why Oncologists Need to Provide Palliative Care
In 2018, the American Society of Clinical Oncology (ASCO) issued a practice guideline stating that every patient with advanced cancer should be seen by a palliative care specialist team within 8 weeks after diagnosis.1 This robust conclusion was based on multiple clinical trials conducted in the outpatient clinic showing better symptom control; improved quality of life for both patient and caregiver; less distress, anxiety, and depression despite greater awareness of the prognosis; and even better survival. In 2 recent trials of patient-reported outcomes (PROs) of symptom management, absolute survival benefits of 62 and 123 patients for every 100 treated were observed at 5 and 2 years of follow-up, respectively. These results have been borne out in the real-world setting; patients with lung cancer who received palliative care cost Medicare thousands of dollars less per person, with a hazard ratio for death of 0.83.4 The addition of outpatient and inpatient palliative care also changed end-of-life care patterns away from the intensive care unit (ICU) and hospital toward home and inpatient hospice, allowing a better utilization of ICU resources and saving payers thousands of dollars per person.5
On the inpatient side, multiple studies have shown better symptom control, less patient and caregiver distress, better use of the ICU, slightly shorter length of stay, and thousands of dollars in health savings per patient.5,6 The sicker the patient and the earlier the involvement of palliative care, the greater were the savings.7 (Although the palliative care specialty is not intended to save money, the business case is easy to make.)
What the ASCO guideline did not mention was that not enough palliative care professionals are available to provide all this specialty service. Although some hospices extended their services to begin providing palliative care (meaning that oncologists still had to say “hospice”), others did not. In addition, the quality of care and services varies substantially from hospice to hospice, with no professional or consumer-driven ratings available to recommend one over another. So, how can oncology practices fill the gap between the recommendations for concurrent palliative care and the reality that we must do most of it ourselves?
How Oncologists Can Provide Palliative Care
In the simplest terms, palliative care consists of 2 critical components, which some have termed “bundles”8: symptom management and communication. We are all trained in symptom management, and we usually start with the question, “How are you?” This question on its own is inadequate, however. For example, oncology patients are known to downplay symptoms to be “good patients” or to avoid a change in therapy. One study found that open-ended questioning led patients to volunteer a median of just 1 symptom, whereas a structured survey uncovered a median of 10 symptoms, 53% of which were distressing.9 Palliative care specialists are trained to use a formal symptom assessment tool, such as the Edmonton Symptom Assessment Scale (ESAS).10 As shown in Table 1, this tool requires that patients be asked about specific common symptoms, and that the symptoms be quantified and charted longitudinally. The most recent ESAS iterations even ask clinicians to inquire about spiritual distress and financial distress, which we have included in Table 1. The questioning does not need to be long or involved; just ask, “Are you bothered by x symptom? From 0 to 10, how bad is it?” All our patients are used to grading pain from 0 to 10, so this part of the assessment is not difficult to accomplish. Although we may not like to ask questions about financial distress, evidence is accumulating that a strong association exists between financial distress and anxiety, depression, and poor quality of life,11 so we should be aware of it.
Some palliative medicine tools are available that may not have made it into the oncologist’s tool kit. For instance, the ASCO guideline on anorexia and cachexia does not recommend any medications or interventions beyond a nutritionist consult.12 A recent trial of 5 mg of olanzapine taken at night, however, showed a dramatic decrease in nausea unrelated to chemotherapy (nausea score of 9/10 reduced to 2/10 at 24 hours and to 1/10 at 1 week) and similar beneficial effects on appetite.13 We often use olanzapine in our practice because of its beneficial effects in patients with insomnia14 and neuropathic pain,15,16 and anecdotal evidence and now recent trial data suggest that it helps to restore appetite. Gabapentin is not the first drug to choose to treat chemotherapy-induced neuropathy17; duloxetine is the only drug with proven efficacy.18 However, gabapentin works well for chronic centralized cough,19,20 and hiccups.21 Topical menthol (we use Mineral Ice, which contains 2% menthol, because it is inexpensive and readily available at any drugstore) appears to help relieve the symptoms of chemotherapy-induced neuropathy, especially tingling, numbness, and hypersensitivity.22
The skill set for communication is harder to implement than that for symptom management. Many of us are not trained in communication, but it can be learned.23 Communication is personally draining; the necessary continual delivery of bad news is disturbing and a vivid reminder of our own mortality—what the nurse and palliative care pioneer Nessa Coyle has called “the existential slap.”24 So many times, the tough conversations do not happen in oncology practice, and people’s lives end in the ICU or hospital, or they spend a brief time in hospice. Among 118 patients with solid tumors who died as inpatients at our institution, a discussion regarding the goals of care was documented for only 24%, even though 84% had seen their oncologist in the month before admission.25 Also at our own institution, 47% of patients dying of gastrointestinal cancer used hospice for less than 7 days,26 which would not pass muster with the National Quality Forum or ASCO.
We have listed some practical tips for incorporating palliative care communication in the outpatient (Table 2) and inpatient (Table 3) setting. Many of us do not have experts in outpatient palliative medicine available, but most sizable hospitals have a team, so the recommendations may differ.
The most important part is to get started with the difficult conversation. We have made a temporary tattoo that goes on the volar forearm so that we can remind ourselves to ask the most difficult questions (Figure).27 One of the authors of this paper (QH) keeps a note pinned on his phone that contains the questions on the tattoo. Just as we have a semi-scripted talk about beginning adjuvant chemotherapy or beginning immunotherapy in breast cancer, we should have a simple set of words to start these conversations. Just being honest and saying things such as, “I am worried about you, and where we are going with this cancer” can start the conversation.
The data are reasonably clear that getting palliative care involved early, whether we do it ourselves or include a specialist team, makes a difference in end-of-life care. In one study, when patients were seen by a palliative care team at least 3 months before they died, end-of-life hospitalizations were reduced and society saved at least $6000 per person. By contrast, involvement during the last month of life made no difference in these measures.28 That is not to say that we should not bother with palliative care near the end of life. Within the last 30 days of life, palliative care involvement was far more likely to lead to hospice referral, and hospice referral reduced the chance of readmission by a factor of 4.09.29
In a large propensity score–weighted trial of inpatient palliative care for persons with cancer, the involvement of palliative care on day 2 of hospitalization (to define the goals of care, as well as to alleviate symptoms) reduced the total hospital cost by 24%.30 The total hospital cost was reduced by 34% when patients with the highest number of comorbidities received palliative care. It is worth reiterating that earlier involvement of palliative care results in greater savings.31 These cost savings came from reduced expenditures per day and reduced total length of stay, as palliative care principles allowed patients to be discharged to an appropriate level of care more quickly.32 As stated earlier, palliative care was never intended to save money—no specialty is—but any oncologist effort is welcomed that reduces admissions and readmissions, saves ICU beds for those who can most benefit, and improves care and quality of life. We call it “better care at a cost we can afford.”
Discussion
We have outlined some symptom management and communication skills used by palliative care specialists that can be readily adopted by oncologists. We miss many opportunities to address advance care planning, or we may wait to address it until patients have only a month left to live.33 According to national guidelines, it is prudent to begin planning a full year before death can reasonably be expected.34
Although the benefits of specialty palliative care are now well recognized and noted in this article, one need not look back any further than the last 20 years to realize how recent these developments are. Dame Cicely Saunders founded the first known hospice, called St. Christopher’s Hospice, in London in 1967. Medicare’s hospice benefit was made permanent by Congress in 1986, and the first palliative care program in a US academic hospital was established only a year later. The subspecialty of Hospice and Palliative Medicine is itself quite new, having been established by the American Board of Medical Specialties in 2006. In 2000, the penetration of palliative care programs at US hospitals with 50 beds or more was less than 25%. As of 2016, penetration was approximately 75%, with 1831 of 2436 hospitals (with more than 50 beds) reporting the presence of a specialty palliative care team.
These developments were not happenstance; rather, they were the result of a concerted effort to gather data from a consistently aging population that was living longer with more comorbidities and being cared for in a health care system with multiple layers of complexity, in which increasingly more diagnostic procedures and treatments were at the disposal of clinicians. Such gathering of data together with changes at the institutional and policy level have made palliative care a center point for those who have advanced disease with a significant symptom burden, and who require appropriate counseling on transitioning from a philosophy focused on treatment to one focused on quality of life. Notably, in the United States, 2017 was the first year since the early 20th century in which the home surpassed the hospital as the place where people most frequently died. Between 1997, when the first Institute of Medicine report on dying, titled “Approaching Death,” was published, and 2015, when the second report, titled “Dying in America,” was published, the field of palliative care became an integral part of the modern American hospital.35,36
Yet significant care gaps remain, especially in the number of palliative care physicians and advance practice providers trained in the discipline. This shortage is compounded by the fact that practicing oncologists may receive inadequate prior training during medical school and residency, and even during fellowship, when the major focus remains on learning the diagnostic schema for a wide variety of malignant and nonmalignant diseases, along with the ever-expanding list of possible treatment options. A focus on the underlying pathology and treatment of disease often accompanies oncologists into practice. Although it may be difficult for oncologists to adopt the entire palliative care specialty into their practices, a recognition of the most salient points may help reduce avoidable distress for patients during the time when they are most vulnerable. We hope this article will encourage oncologists to adopt best practices into the daily care of their patients.
Acknowledgments
Supported by National Cancer Institute grants P 30 006973 and 1 R01 CA177562-01A1, Patient-Centered Outcomes Research Institute (PCORI) Improving Healthcare Systems grant 1609-36518, the Harry J. Duffey Family Fund for Palliative Care, and The Lerner Foundation, Washington, DC.
Disclosures
The authors have no conflicts of interest to report.
References
1. 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(1):96-112.
2. Basch E, Deal AM, Dueck AC, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA. 2017;318(2):197-198.
3. Denis F, Basch E, Septans AL, et al. Two-year survival comparing web-based symptom monitoring vs routine surveillance following treatment for lung cancer. JAMA. 2019;321(3):306-307.
4. Huo J, Hong YR, Turner K, et al. Timing, costs, and survival outcome of specialty palliative care in medicare beneficiaries with metastatic non-small-cell lung cancer. JCO Oncol Pract. 2020;16(12):e1532-e1542.
5. Smith S, Brick A, O’Hara S, Normand C. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliat Med. 2014;28(2):130-150.
6. Kelley AS, Morrison RS. Palliative Care for the seriously ill. N Engl J Med. 2015;373(8):747-755.
7. Cassel JB, Kerr KM, Kalman NS, Smith TJ. The business case for palliative care: translating research into program development in the U.S. J Pain Symptom Manage. 2015;50(6):741-749.
8. Warfel ME, Mathews KB; American Academy of Family Physicians. Primary palliative care: getting started. https://www.aafp.org/dam/AAFP/documents/events/rps_pdw/handouts/res18-92-primary-palliative-care-getting-started.pdf. Accessed February 2, 2021.
9. Homsi J, Walsh D, Rivera N, et al. Symptom evaluation in palliative medicine: patient report vs systematic assessment. Support Care Cancer. 2006;14(5):444-453.
10. Capital Health / Caritas Health Group Regional Palliative Care Program. Guidelines for using the Edmonton Symptom Assessment System (ESAS) http://www.npcrc.org/files/news/edmonton_symptom_assessment_scale.pdf. Accessed February 2, 2021.
11. Mercadante S, Aielli F, Adile C, Bonanno G, Casuccio A. Financial distress and its impact on symptom expression in advanced cancer patients. Support Care Cancer. 2021;29(1):485-490.
12. Roeland EJ, Bohlke K, Baracos VE, et al. Management of cancer cachexia: ASCO guideline. J Clin Oncol. 2020;38(21):2438-2453.
13. Navari RM, Pywell CM, Le-Rademacher JG, et al. Olanzapine for the treatment of advanced cancer-related chronic nausea and/or vomiting: a randomized pilot trial. JAMA Oncol. 2020;6(6):895-899.
14. Atkin T, Comai S, Gobbi G. Drugs for insomnia beyond benzodiazepines: pharmacology, clinical applications, and discovery. Pharmacol Rev. 2018;70(2):197-245.
15. Torigoe K, Nakahara K, Rahmadi M, et al. Usefulness of olanzapine as an adjunct to opioid treatment and for the treatment of neuropathic pain. Anesthesiology. 2012;116(1):159-169.
16. Jimenez XF, Sundararajan T, Covington EC. A systematic review of atypical antipsychotics in chronic pain management: olanzapine demonstrates potential in central sensitization, fibromyalgia, and headache/migraine. Clin J Pain. 2018;34(6):585-591.
17. Loprinzi CL, Lacchetti C, Bleeker J, et al. Prevention and management of chemotherapy-induced peripheral neuropathy in survivors of adult cancers: ASCO guideline update. J Clin Oncol. 2020;38(28):3325-3348.
18. Smith EM, Pang H, Cirrincione C, et al; Alliance for Clinical Trials in Oncology. Effect of duloxetine on pain, function, and quality of life among patients with chemotherapy-induced painful peripheral neuropathy: a randomized clinical trial. JAMA. 2013;309(13):1359-1367.
19. Ryan NM, Birring SS, Gibson PG. Gabapentin for refractory chronic cough: a randomised, double-blind, placebo-controlled trial. Lancet. 2012;380(9853):1583-1589.
20. Razzak R, Waldfogel JM, Doberman DJ, Feliciano JL, Smith TJ. Gabapentin for cough in cancer. J Pain Palliat Care Pharmacother. 2017;31(3-4):195-197.
21. Porzio G, Aielli F, Verna L, Aloisi P, Galletti B, Ficorella C. Gabapentin in the treatment of hiccups in patients with advanced cancer: a 5-year experience. Clin Neuropharmacol. 2010;33(4):179-180.
22. Fallon MT, Storey DJ, Krishan A, et al. Cancer treatment-related neuropathic pain: proof of concept study with menthol—a TRPM8 agonist. Support Care Cancer. 2015;23(9):2769-2777.
23. Back AL, Arnold RM, Baile WF, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med. 2007;167(5):453-460.
24. Coyle N. The existential slap—a crisis of disclosure. Int J Palliat Nurs. 2004;10(11):520.
25. Heng J, Sedhom R, Smith TJ. Lack of advance care planning before terminal oncology intensive care unit admissions. J Palliat Med. 2020;23(1):5-6.
26. Sedhom R, Gupta A, Smith TJ. Short hospice length of service in a comprehensive cancer center. J Palliat Med. 2021;24(2):257-260.
27. Leong M, Shah M, Smith TJ. How to avoid late chemotherapy. J Oncol Pract. 2016;12(12):1208-1210.
28. Scibetta C, Kerr K, Mcguire J, Rabow MW. The costs of waiting: implications of the timing of palliative care consultation among a cohort of decedents at a comprehensive cancer center. J Palliat Med. 2016;19(1):69-75.
29. DiMartino LD, Weiner BJ, Hanson LC, et al. Inpatient palliative care consultation and 30-day readmissions in oncology. J Palliat Med. 2018;21(1):62-68.
30. May P, Garrido MM, Cassel JB, et al. Prospective cohort study of hospital palliative care teams for inpatients with advanced cancer: earlier consultation is associated with larger cost-saving effect. J Clin Oncol. 2015;33(25):2745-2752.
31. May P, Garrido MM, Cassel JB, et al. Palliative care teams’ cost-saving effect is larger for cancer patients with higher numbers of comorbidities. Health Aff (Millwood). 2016;35(1):44-53.
32. May P, Garrido MM, Cassel JB, et al. Cost analysis of a prospective multi-site cohort study of palliative care consultation teams for adults with advanced cancer: where do cost-savings come from? Palliat Med. 2017;31(4):378-386.
33. Mack JW, Cronin A, Taback N, et al. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med. 2012;156(3):204-210.
34. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 4th ed. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018.
35. Field MJ, Cassel CK, eds. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academies Press (US); 1997.
36. Committee on Approaching Death: Addressing Key End of Life Issues; Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2015.
37. Singh S, Cortez D, Maynard D, Cleary JF, DuBenske L, Campbell TC. Characterizing the nature of scan results discussions: insights into why patients misunderstand their prognosis. J Oncol Pract. 2017;13(3):e231-e239.
38. Niranjan SJ, Turkman Y, Williams BR, et al. “I’d want to know, because a year’s not a long time to prepare for a death”: role of prognostic information in shared decision making among women with metastatic breast cancer. J Palliat Med. 2020;23(7):937-943.
39. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
40. Greer JA, Applebaum AJ, Jacobsen JC, Temel JS, Jackson VA. Understanding and addressing the role of coping in palliative care for patients with advanced cancer. J Clin Oncol. 2020;38(9):915-925.
41. Rocque GB, Barnett AE, Illig LC, et al. Inpatient hospitalization of oncology patients: are we missing an opportunity for end-of-life care? J Oncol Pract. 2013;9(1):51-54.
42. Yeh JC, Knight LS, Kane J, Doberman DJ, Gupta A, Smith TJ. Has there been a shift in use of subacute rehabilitation instead of hospice referral since immunotherapy has become available? J Oncol Pract. 2019;15(10):e849-e855.