NCCN Guidelines® Insights: Palliative Care, Version 2.2021

Featured Updates to the NCCN Guidelines

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  • 1 Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine;
  • | 2 University of Colorado Cancer Center;
  • | 3 Vanderbilt-Ingram Cancer Center;
  • | 4 St. Jude Children's Research Hospital/The University of Tennessee Health Science Center;
  • | 5 Fox Chase Cancer Center;
  • | 6 Huntsman Cancer Institute at the University of Utah;
  • | 7 University of Wisconsin Carbone Cancer Center;
  • | 8 Mayo Clinic Cancer Center;
  • | 9 Roswell Park Comprehensive Cancer Center;
  • | 10 The University of Texas MD Anderson Cancer Center;
  • | 11 The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins;
  • | 12 Memorial Sloan Kettering Cancer Center;
  • | 13 University of Michigan Rogel Cancer Center;
  • | 14 Abramson Cancer Center at the University of Pennsylvania;
  • | 15 Yale Cancer Center/Smilow Cancer Hospital;
  • | 16 Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute;
  • | 17 Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance;
  • | 18 O'Neal Comprehensive Cancer Center at UAB;
  • | 19 UC San Diego Moores Cancer Center;
  • | 20 Robert H. Lurie Comprehensive Cancer Center of Northwestern University;
  • | 21 Moffitt Cancer Center;
  • | 22 Stanford Cancer Institute;
  • | 23 Duke Cancer Institute;
  • | 24 Massachusetts General Hospital Cancer Center;
  • | 25 Fred & Pamela Buffett Cancer Center;
  • | 26 UT Southwestern Simmons Comprehensive Cancer Center;
  • | 27 Dana-Farber Cancer Institute;
  • | 28 UCLA Jonsson Comprehensive Cancer Center;
  • | 29 City of Hope National Medical Center; and
  • | 30 National Comprehensive Cancer Network.

Palliative care has evolved to be an integral part of comprehensive cancer care with the goal of early intervention to improve quality of life and patient outcomes. The NCCN Guidelines for Palliative Care provide recommendations to help the primary oncology team promote the best quality of life possible throughout the illness trajectory for each patient with cancer. The NCCN Palliative Care Panel meets annually to evaluate and update recommendations based on panel members’ clinical expertise and emerging scientific data. These NCCN Guidelines Insights summarize the panel’s recent discussions and highlights updates on the importance of fostering adaptive coping strategies for patients and families, and on the role of pharmacologic and nonpharmacologic interventions to optimize symptom management.

NCCN: Continuing Education

Target Audience: This activity is designed to meet the educational needs of oncologists, nurses, pharmacists, and other healthcare professionals who manage patients with cancer.

Accreditation Statements

In support of improving patient care, National Comprehensive Cancer Network (NCCN) is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

Medicine (ACCME): NCCN designates this journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 CreditTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Nursing (ANCC): NCCN designates this educational activity for a maximum of 1.0 contact hour.

Pharmacy (ACPE): NCCN designates this knowledge-based continuing education activity for 1.0 contact hour (0.1 CEUs) of continuing education credit. UAN: JA4008196-0000-21-010-H01-P

All clinicians completing this activity will be issued a certificate of participation. To participate in this journal CE activity: (1) review the educational content; (2) take the posttest with a 66% minimum passing score and complete the evaluation at https://education.nccn.org/node/90502; and (3) view/print certificate.

Pharmacists: You must complete the posttest and evaluation within 30 days of the activity. Continuing pharmacy education credit is reported to the CPE Monitor once you have completed the posttest and evaluation and claimed your credits. Before completing these requirements, be sure your NCCN profile has been updated with your NAPB e-profile ID and date of birth. Your credit cannot be reported without this information. If you have any questions, please e-mail education@nccn.org.

Release date: July 10, 2021; Expiration date: July 10, 2022

Learning Objectives:

Upon completion of this activity, participants will be able to:

  • Integrate into professional practice the updates to the NCCN Guidelines for Palliative Care
  • Describe the rationale behind the decision-making process for developing the NCCN Guidelines for Palliative Care

Disclosure of Relevant Financial Relationships

The NCCN staff listed below discloses no relevant financial relationships:

Kerrin M. Rosenthal, MA; Kimberly Callan, MS; Genevieve Emberger Hartzman, MA; Erin Hesler; Kristina M. Gregory, RN, MSN, OCN; Rashmi Kumar, PhD; Karen Kanefield; and Kathy Smith.

Individuals Who Provided Content Development and/or Authorship Assistance:

Maria Dans, MD, Panel Chair, has disclosed no relevant financial relationships.

Jean S. Kutner, MD, MSPH, Panel Vice Chair, has disclosed no relevant financial relationships.

Mary Anne Bergman, Guidelines Coordinator, NCCN, has disclosed no relevant financial relationships.

Ndiya Ogba, PhD, Oncology Scientist/Medical Writer, NCCN, has disclosed no relevant financial relationships.

Mallory Campbell, PhD, Oncology Scientist/Medical Writer, NCCN, has disclosed no relevant financial relationships.

To view all of the conflicts of interest for the NCCN Guidelines Panel, go to NCCN.org/guidelines/guidelines-panels-and-disclosure/disclosure-panels.

Overview

More than 1.8 million people are expected to be diagnosed with cancer in the United States in 2021, and 608,570 people are expected to die of the disease.1 Global cancer rates are increasing, with an associated rise in the number of cancer survivors living with symptoms and disabilities as a result of their disease and/or its treatment.1 3 More than one-third of patients with cancer in a large observational cohort study reported moderate to severe symptoms in most categories (pain, nausea, anxiety, depression, shortness of breath, drowsiness, well-being, loss of appetite, and tiredness) in the last weeks of life.4 Several groups, including the WHO, ASCO, and American Society of Hematology, recommend integrating palliative care with disease-directed care beginning at the time of diagnosis.5 7 This allows for more holistic and timely identification of challenges facing patients and their families, and more robust and restorative problem-solving.

Palliative Care in Oncology

The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) define palliative care as an approach to patient/family/caregiver-centered healthcare that focuses on optimal management of distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family/caregiver needs, values, beliefs, and cultures. The goal of palliative care is to anticipate, prevent, and reduce suffering; promote adaptive coping; and support the best possible quality of life (QoL) for patients/families/caregivers, regardless of the stage of the disease or the need for other therapies. Palliative care should begin at diagnosis; be delivered concurrently with disease-directed, life-prolonging therapies; and facilitate patient autonomy, access to information, and choice. The value of early integration of palliative care into the continuum of cancer care has been well demonstrated.8 12 During the recent meeting to discuss updates to the NCCN Guidelines for Palliative Care, the panel highlighted the importance of applying palliative care practices in a way that includes not only the patient but also families and caregivers. In particular, the panel stressed that the promotion of adaptive coping strategies (defined as problem-solving strategies as opposed to avoidant coping strategies) for patients, families, and caregivers should be a component of all stages of the care plan. A recent study examining patients’ perception of treatment goals showed that patients who acknowledged the incurable nature of their disease reported higher psychologic distress compared with those who perceived their treatment goals as curative, regardless of accuracy of the perception.13 Additionally, patients whose treatment goals were discordant with their oncologist’s also reported increased distress symptoms.13 In contrast, another study showed that patients with an accurate understanding that their disease was incurable who engaged in specific active coping strategies had fewer depressive symptoms than those not engaged in coping strategies.14 The panel recommends encouraging adaptive coping methods for patients, family, and caregivers, particularly when cultivating prognostic awareness to help improve both goal-concordant care and QoL.

Palliative care should be initiated by the primary oncology team and should be augmented through collaboration with palliative care specialists in an interprofessional team (including but not limited to board-certified palliative care physicians, advanced practice providers, nurses, dietitians, social workers, psychologists, psychiatrists, chaplains, and pharmacists) to address intractable symptoms and/or complex psychosocial issues.15 Additionally, palliative care should reach beyond the patient to include family and caregivers. During the recent meeting to discuss updates to the NCCN Guidelines, the panel acknowledged that palliative care is a collaborative practice, and therefore recommends recognition of all expertise with the term “interprofessional.” Using language that allows for a better understanding of expectations can improve teamwork during interactions among multiple areas of practice.15

Comprehensive Assessment

Patients should undergo a comprehensive palliative care assessment by their primary oncology team, including an evaluation of the benefits and burdens of anticancer therapy; the patient’s and family’s decision-making style and capacity; their coping strategies; any physical symptoms; psychosocial or spiritual distress; personal goals, values, and expectations; educational and informational needs; potential financial toxicity; and cultural factors affecting care.16 18

Assessment of Psychosocial Distress

Assessment of psychosocial distress should include both the patient and the caregivers, and should focus on illness-related distress and psychosocial, spiritual, or existential needs according to the NCCN Guidelines for Distress Management (available at NCCN.org). Concerns regarding social support and resources (ie, home, family, community, or financial) must also be assessed. While discussing recent updates to the Guidelines, the panel emphasized the effect that employment or the loss of employment may have on psychologic distress. Loss of employment, in particular, may lead to decreased feelings of personal purpose, increased social isolation (or loneliness) due to loss of one’s workplace community, as well as financial toxicity.19 Interventions that may help to reverse some of this distress include but are not limited to promotion of adaptive coping methods for both patients and caregivers, and provision of additional psychologic and financial support, when possible (see PAL-5, page 783).

Palliative Care Interventions

The oncology team should initiate treatments following the specific recommendations described in these guidelines for common symptoms. Comorbid physical and psychosocial conditions should be treated by appropriate clinicians. Consultation or collaboration with palliative care specialists or teams is recommended for patients with more complex concerns to improve their QoL.20 23 Referrals should be made as needed to mental health, social and psychosocial support services, spiritual care, healthcare interpreters, hospice services, financial counselors, or other specialists. Finally, the oncology team may find collaboration with a palliative care team helpful in identifying additional support through religious organizations, schools, or other agencies in the community.

Anticancer Therapy

Primary palliative care, including both anticancer treatments and disease-related symptom management, should be provided for all patients. Anticancer therapy should be in line with standard practice as well as stated patient goals and priorities and be accompanied by appropriate prevention/management of adverse effects as well as palliation of physical and psychosocial symptoms. A longitudinal cohort study evaluated the impact of palliative chemotherapy on QoL near the end of life (median 3.8 months before death) as a function of patient performance status. For patients with progressive metastatic cancer in this study, palliative chemotherapy failed to improve QoL near death for those with moderate or poor performance status and worsened QoL near death for those with initially good performance status.24 Additional studies have reported that anticancer therapy may continue beyond what is evidence-based for patients with advanced or metastatic disease.25 27 This suggests a need for better prognostic awareness and iterative discussions of patient/family/caregiver values and goals of treatment.

Symptom Management

Symptoms should be comprehensively assessed in all patients. In noncommunicative patients, symptom intensity may be assessed using physical signs. Education should be provided to the patient/family/caregiver on the patient’s condition and the risk/benefit of treatment options. At the most recent meeting to update the NCCN Guidelines, the panel added a recommendation that providing resources for the psychosocial and emotional support of not only the patient but also family/caregiver(s) be considered an integral part of symptom management. As a general principle, when appropriate, providers should try to use palliative interventions that may address multiple symptoms.

Pain

The patient and family/caregiver should be educated on the role of pain medications, customized to the patient’s particular situation. In addition, it is important to note that dying patients in their last weeks of life may have different needs than patients at earlier disease stages. For instance, if feasible or desired, pain management may need to be balanced against reduced level of consciousness. In advanced cancer, opioids may need to be titrated aggressively for moderate/severe acute/chronic pain.28 Single-fraction palliative radiotherapy may also be used to address pain associated with bone metastases.29 32 A recent systematic review also found that terminally ill patients receiving nonpharmacologic therapy in addition to medication experienced greater physical symptom relief and overall mood improvement.33 The panel recommends consideration of nonpharmacologic and/or integrative interventions as an additional source of pain management. Examples include cognitive behavioral therapy and acceptance and commitment therapy; massage; art or music therapy; application of hot or cold packs; repositioning; and use of supportive braces.31 39 For pain refractory to all of these interventions, palliative sedation may be considered following consultation with pain management or palliative care specialists, consistent with local institutional policies.

Anorexia/Cachexia

Cachexia is physical wasting with loss of skeletal and visceral muscle mass and is very common among patients with advanced cancer.40 , 41 Many patients with cancer lose the desire to eat (anorexia), which contributes to cachexia. Cachexia can also occur independently from anorexia, as proinflammatory cytokines and tumor-derived factors directly lead to muscle proteolysis.40 , 41 Cachexia leads to asthenia (weakness), hypoalbuminemia, emaciation, immune system impairment, metabolic dysfunction, and autonomic failure. Cancer-related cachexia has also been associated with failure of anticancer treatment, increased treatment toxicity, delayed treatment initiation, early treatment termination, shorter survival, and psychosocial distress.40 42 A study that examined cancer cachexia in a cohort of 1,473 patients across all weight ranges showed that muscle depletion conveys a similarly poor prognosis as involuntary weight loss, regardless of body mass index.43

Initial steps include evaluating the rate and severity of weight loss and associated symptoms, educating the patient/family/caregiver on the patient’s condition, and discussing the risks/benefits of available treatment options. During assessment, the panel strongly recommends considering a formal swallowing evaluation for patients who report dysphagia or exhibit symptoms that suggest possible swallowing dysfunction. The panel also suggests that clinicians assess for conditions or symptoms that interfere with food intake, such as dysgeusia, xerostomia, dental/jaw issues, intractable hiccups, mucositis, oropharyngeal candidiasis, depression, early satiety, nausea and vomiting, and pain. A psychiatric evaluation may be considered if there is suspicion or a history of an eating disorder. Treatment may include management of symptoms or discontinuation of medications that interfere with food intake, as well as improving a bowel regimen to optimize gut motility.44 46 Strengthening social supports, dietary counseling, and feeding assistance may also be offered as nonpharmacologic management of cachexia.47

If increased appetite is an important aspect of the patient’s QoL, appetite stimulants may be helpful (eg, megestrol acetate, dexamethasone, olanzapine).48 52 Systematic reviews and meta-analyses of megestrol acetate demonstrate improved appetite and slight improvements in weight gain.47 , 49 However, benefits of using megestrol acetate should be balanced with the potential increased risk for venous thromboembolic events, fluid retention, and death, particularly in older patients or those who are nonambulatory.53 55 Combining megestrol acetate therapy with dietary counseling and nutritional supplements may yield improved outcomes for patients with preserved functional status and cancer cachexia.47

Summary

This article highlights recent updates to the 2021 version of the NCCN Guidelines for Palliative Care. Several recommendations were made by the panel to enhance the QoL of patient/family/caregivers throughout the disease trajectory. These include effectively assessing and addressing psychosocial distress, promoting adaptive coping strategies for patients/family/caregivers, and emphasizing the need for holistic cancer care plans that include patient/family/caregiver education and support. The panel acknowledged and recommended describing the palliative care team as “interprofessional” to emphasize its collaborative nature. Updates also included suggestions for a multimodal approach to the management of anorexia/cachexia.

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  • 1.

    Siegel RL , Miller KD , Jemal A. Cancer statistics, 2020. CA Cancer J Clin 2020;70:730.

  • 2.

    Centers for Disease Control and Prevention. Cancer survivors—United States, 2007. MMWR Morb Mortal Wkly Rep 2011;60: 269272.

  • 3.

    Ferris FD , Bruera E , Cherny N , et al. Palliative cancer care a decade later: accomplishments, the need, next steps – from the American Society of Clinical Oncology. J Clin Oncol 2009;27:30523058.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 4.

    Seow H , Barbera L , Sutradhar R , et al. Trajectory of performance status and symptom scores for patients with cancer during the last six months of life. J Clin Oncol 2011;29:11511158.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5.

    Murray SA , Kendall M , Mitchell G , et al. Palliative care from diagnosis to death. BMJ 2017;356:j878.

  • 6.

    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;35:96112.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 7.

    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;2015:471478.

    • Crossref
    • Search Google Scholar
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