Clinical Advances in Hematology & Oncology

June 2021 - Volume 19, Issue 6

Incorporating Palliative Care Into Oncology Practice: Why and How

Qasim Hussaini, MD, MS, and Thomas J. Smith, MD

Qasim Hussaini, MD, MS
Department of Oncology, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University, Baltimore, Maryland

Thomas J. Smith, MD
Department of Oncology, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University, Baltimore, Maryland
Division of General Internal Medicine, Department of Medicine, Johns Hopkins University, Baltimore, Maryland

Corresponding author:
Thomas J. Smith, MD, FACP, FASCO, FAAHPM
Harry J. Duffey Family Professor of Palliative Medicine
Johns Hopkins Medical Institutions
600 N. Wolfe Street, Blalock 369
Baltimore, MD 21287-0005
Tel: (410) 955-2091
Fax (410) 955-2098

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.”


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.


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.


The authors have no conflicts of interest to report.


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