Chapter 5

Palliative Care Assessment

J. Jones,    University of Pennsylvania Health System, Philadelphia, PA, United States

Abstract

Palliative radiotherapy can be highly effective in the management of complex symptoms of advanced cancer. However, a detailed assessment of patient and family, including an evaluation of overall distress, symptom burden, illness understanding, and goals of care is imperative in informing decision-making in patients with advanced cancer. This chapter outlines how to conceptualize differences between palliative and curative radiotherapy. Further, the chapter outlines an approach to patient and family that introduces fundamental concepts in palliative medicine, screening tools for assessing patients and families referred for palliative radiotherapy, and questions important in considering whether palliative radiotherapy may be appropriate for an individual patient. The chapter concludes with an analysis of factors that impact dose/fractionation and radiotherapy technique that may be most appropriate for palliative radiotherapy.

Keywords

Palliative care; radiotherapy; screening; distress; symptoms; goals of care; prognostic awareness

Introduction

When a patient is referred for consideration of palliative radiotherapy, an overall assessment of patient and family must predicate all decision-making regarding the provision of radiation treatments. Questions about patient and family understanding of illness, patient and family understanding of prognosis, overall symptom burden, and the impact that radiotherapy will have on each of these areas must be weighed against the potential burdens of radiotherapy, including burdens of the actual treatment itself and the risks of both acute and late side effects of radiotherapy. The set of risks versus benefits of radiotherapy must be weighed in the context of patient and family overall goals to come to a mutual understanding of what treatments are most appropriate for the patient at any given time. This chapter explores the approach needed to undertake such an assessment for a patient referred for palliative radiotherapy.

• Historically, what are the differences between patients treated with curative or radical intent versus palliative intent?

ent “In a ‘curable’ situation, radiation therapy is radical treatment and a modest complication rate is licensed. In the event of failure, palliation often is a begrudgingly accepted bonus. Such unscheduled palliation is not the issue here. When the initial objective of radiation therapy is palliation, new ground rules must be applied. Possible serious complications or even slowly self-limiting side effects of treatment are no longer acceptable. Overall treatment time must be short. Cost must be minimized. Convenience of treatment must be considered” (JAMA, 1964, Robert Parker, Chair of Radiation Oncology, University of Washington) [1].

• Do such stark differences between palliative and curative radiation apply in the era of modern radiotherapy?

ent Sometimes, particularly for patients near the end of life. Advances in radiotherapy have made aggressive treatment of some metastatic lesions with treatments such as stereotactic ablative radiotherapy possible with minimal side effects. Fundamentally, though, questions about goals of radiotherapy (local tumor control versus strict symptom palliation) must be considered in the context of patient/family wishes in order to use a patient/family-centered approach to radiation [25].

ent Factors that should be considered when choosing to treat or not treat and to select appropriate dose-fractionation discussed at the end of this chapter.

ent In 2014, as part of the Choosing Wisely campaign to improve healthcare value, the American Society of Radiation Oncology (ASTRO) weighed in on the importance of defining goals of care and collaboration with palliative care teams:

– “Don’t initiate non-curative radiation therapy without defining the goals of treatment with the patient and considering palliative care referral” [6].

– See Chapter 1, General Approach to Palliative Care and Palliative Radiation Oncology; Chapter 2, A Practical Guide to Communication in Palliative Care, Chapter 3, Prognostication in Patients Receiving Palliative Radiation Therapy; Chapter 4, Palliative Care, Hospice Care, Advance Care Planning, and Advance Directives; and this chapter, for more details of palliative care.

• How is palliative care defined (for patients/families referred to palliative care)?

ent Center to Advance Palliative Care (CAPC) definition:

– Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment [7].

• World Health Organization (WHO) definition:

ent Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. Palliative care:

– provides relief from pain and other distressing symptoms;

– affirms life and regards dying as a normal process;

– intends to neither hasten nor postpone death;

– integrates the psychological and spiritual aspects of patient care;

– offers a support system to help patients live as actively as possible until death;

– offers a support system to help the family cope during the patients illness and in their own bereavement;

– uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;

– will enhance quality of life, and may also positively influence the course of illness;

– is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

ent Of note, for the WHO definition, palliative radiotherapy may be delivered without intent to prolong life, but rather with a goal of improving symptoms.

• What fundamental questions must be answered in assessing a patient referred for palliative radiotherapy?

ent Palliative care assessment should include assessment of the following issues [8]:

ent What is the patient’s overall level of distress (physical, psychosocial, spiritual, etc.)?

– Definition of distress:

ent Distress is a multifactorial unpleasant emotional experience of a psychological (i.e., cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis [9].

– Distress is the preferred term (rather than “psychosocial,” “emotional,” “psychiatric” because it is more acceptable) [9].

– Screening should evaluate for practical problems, family problems, emotional problems, spiritual/religious problems, and physical problems.

– Positive screens should lead to referral to other supportive team members (palliative care, social work, chaplaincy).

– See Chapter 1, General Approach to Palliative Care and Palliative Radiation Oncology, for more details on the spiritual aspects of palliative care.

ent What is the patient’s overall symptom burden?

– Common symptoms that should be assessed per the NCCN Palliative Care Guidelines [8]:

ent Pain;

ent Dyspnea;

ent Anorexia/cachexia;

ent Nausea/vomiting;

ent Constipation;

ent Malignant bowel obstruction;

ent Fatigue;

ent Weakness;

ent Asthenia;

ent Insomnia and daytime sedation;

ent Delirium;

ent See Chapter 6, Pain Management; Chapter 7, Radiation-Induced Adverse Effects; Chapter 8, Management of Dyspnea and Central Airway Obstruction in Patients With Malignancy; Chapter 9, General Management: Bleeding; Chapter 10, Skin Toxicity in Palliative Radiation Therapy, for specific management of symptoms including pain, GI symptoms, dyspnea, bleeding, and skin challenges;

ent Collaboration with palliative care should be considered when symptoms persist in spite of palliative interventions by the primary oncology teams.

– Multiple screening tools exist to assess for severe symptoms and should be utilized regularly, either a general tool or specific tool based on referral (see appendices):

ent Edmonton Symptom Assessment Score (ESAS);

ent MD Anderson Symptom Assessment Scores (bone, brain, spine);

ent EORTC Quality of life measures and for bone metastases;

ent Nonverbal pain assessment tools.

ent What is the patient/family understanding of current illness status?

– Data from Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) suggest that many patients do not understand the goals of their treatment (radiotherapy or chemotherapy) and such data may impact decision-making, so assessment of illness understanding is fundamental to the consultation.

– Prospective data from the Cancer Care Outcomes Research and Surveillance Consortium; two analyses prospectively explored patient expectations regarding goals of treatment:

– Weeks et al. NEJM 2012 [10]

1193 patients alive 4 months after diagnosis of stage IV lung or colorectal cancer completed surveys regarding expectations of chemotherapy;

69% of patients with lung cancer and 81% of patients with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer.

– Chen et al. JCO 2013 [11].

ent 384 patients who received radiotherapy for stage IIIB or stage IV nonsmall cell lung cancer;

ent 78% of patients believed RT was very or somewhat likely to help them live longer;

ent 67% believed that RT was very or somewhat likely to help them with problems related to their cancer;

ent 64% did not understand that RT was not at all likely to cure them.

– Given importance in decision-making and described misinterpretation of goals of therapy, consider asking patients and families directly: “What is your understanding of your current situation?”

– Be prepared to discuss “serious news” if patient has not understood that disease is incurable.

– Responding to emotion is critical to conversations about serious news; consider NURSE acronym, from Mastering Communication with Seriously Ill Patients [12]:

ent Name the emotion;

ent Understand the emotion;

ent Respect (praise) the patient;

ent Support the patient;

ent Explore the emotion.

– See Chapter 2, A Practical Guide to Communication in Palliative Care, for more on communication skills regarding illness understanding.

ent What is the patient/family’s prognostic awareness? (see Chapter 3, Prognostication in Patients Receiving Palliative Radiation Therapy, for tools to help with prognostication.)

– How much do patient/family want to know?

– Consider discussion using ranges (years, months, dying patient) and/or best and worst case scenarios.

– If patient and/or family do not want to know, consider whether prognosis will impact decision-making in palliative radiotherapy beyond the fact that the illness is incurable in deciding to explore further.

– Response to emotion (NURSE as above).

ent How involved would patient/family like to be in decision-making?

– A direct question can help to improve medical decision-making, allowing patients to invite caregivers into the conversation, defer to family, or defer to the medical team [1314].

ent What are the patient’s overall goals of care?

– Even if not assessing patient/family interest in continuing further antineoplastic therapy, advanced care planning, or other details of therapy outside of the proposed radiation treatment, it is important to understand patient/family goals as regard radiotherapy.

– Four questions can serve as a starting point for discussion of risks and benefits of radiotherapy (adapted from Atul Gawande, “The Best Day Possible” [15] and Being Mortal [16]):

ent What is your understanding of your health or condition? (as above)

ent What are your goals if your health worsens?

ent What are your fears?

ent What are the trade-offs you are willing to make and not willing to make?

– See Chapter 2, A Practical Guide to Communication in Palliative Care, for communication techniques and Chapter 4, Palliative Care, Hospice Care, Advance Care Planning, and Advance Directives, for specifics of advanced care planning.
.

• What is the likelihood that palliative radiotherapy will help to relieve the symptom burden? [17] The following chapters discuss specifics of the likely efficacy of palliative radiotherapy by symptom and by site.

ent If asymptomatic, what is the goal of palliative radiotherapy?

ent Is local tumor control an important goal of radiotherapy for this patient at this time?

ent What other treatment options might help with symptom relief and must be weighed in the context of what palliative radiotherapy can offer?

ent What dose/fractionation and radiotherapy technique best achieve the balance of symptom control and patient convenience to patient?

• What are the factors that influence the appropriate selection of dose-fractionation scheme and appropriate radiotherapy technique? From Jones ASTRO CME [17] adapted from Van Oorshot et al. [18].

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• Table describing factors that influence dose-fractionation and when not to treat with radiotherapy, from Jones and Simone, Palliative Radiotherapy, APM, 2014 [19].

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• When should hospice or palliative care without radiotherapy be considered? [20,21]

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References

1. Parker RG. Palliative radiation therapy. JAMA. 1964;190(11):126–128.

2. Lutz ST, Jones J, Chow E. Role of radiation therapy in palliative care of the patient with cancer. J Clin Oncol. 2014;32(26):2913–2919 http://dx.doi.org/10.1200/JCO.2014.55.1143.

3. Jones JA, Lutz ST, Chow E, Johnstone P. Palliative radiotherapy at the end of life: a critical review. CA Cancer J Clin 2014; Sep-Oct;64(5):296–310. http://dx.doi.org/10.3322/caac.21242.

4. Sharma S, Hertan L, Jones J. Palliative radiotherapy: current status and future directions. Semin Oncol 2014; http://dx.doi.org/10.1053/j.seminoncol.2014.09.021.

5. Van Oorschot B, Rades D, Schulze W, Beckmann G, Feyer P. Palliative radiotherapy—new approaches. Semin Oncol. 2011;38(3):443–449 http://dx.doi.org/10.1053/j.seminoncol.2011.03.015.

6. ASTRO Choosing Wisely Campaign. 2014.

7. CAPC Definition of Palliative Care, 2016. Available at: <https://www.capc.org/payers/palliative-care-definitions/>.

8. Levy M, Smith T, Alvarez-Perez A, et al. NCCN guidelines for palliative care v.2016; 2015. p. 1–96.

9. Holland J, Jacobsen P, Andersen B, et al. NCCN guidelines for distress management, v.3.2015; 2015. p. 1–81.

10. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616–1625 http://dx.doi.org/10.1056/NEJMoa1204410.

11. Chen AB, Cronin A, Weeks JC, et al. Expectations about the effectiveness of radiation therapy among patients with incurable lung cancer. J Clin Oncol. 2013;31(21):2730–2735 http://dx.doi.org/10.1200/JCO.2012.48.5748.

12. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope Cambridge: Cambridge University Press; 2009.

13. Belanger E, Rodriguez C, Groleau D. Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis. Palliative Med. 2011;25(3):242–261.

14. Politi M, Studts J, Hayslip J. Shared decision making in oncology practice what do oncologists need to know? Oncologist. 2012;17(1):91–100.

15. The Best Possible Day—NYTimes.com. Available at: <http://www.nytimes.com/2014/10/05/opinion/sunday/the-best-possible-day.html?_r=2> [accessed 06.10.2014].

16. Gawande A. Being mortal: medicine and what matters in the end New York: Metropolitan Books/Henry Holt & Company; 2014;1–282.

17. Jones J. An introduction to the use of radiotherapy for palliation of cancer related distress. In: ASTRO self assessment module on-line continuing medical education; 2015.

18. Van Oorschot B, Rades D, Schulze W, Beckmann G, Feyer P. Palliative radiotherapy—new approaches. Semin Oncol. 2011;38(3):443–449.

19. Jones JA, Simone II CB. Palliative radiotherapy for advanced malignancies in a changing oncologic landscape: guiding principles and practice implementation. Ann Palliat Med. 2014;3(3):192–202 Available at: < http://www.amepc.org/apm/article/view/4147/5062> [accessed 22.09.2014].

20. Lutz S, Korytko T, Nguyen J, Khan L, Chow E, Corn B. Palliative radiotherapy: when is it worth it and when is it not? Cancer J. 2010;16.

21. Jones Ja, Lutz ST, Chow E, Johnstone PA. Palliative radiotherapy at the end of life: a critical review. CA Cancer J Clin. 2014;64(5):295–310 http://dx.doi.org/10.3322/caac.21242.

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