General symptom overview: Importance of side effect management, CINV, anorexia, and cachexia

Palliative care (PC) principles apply to many symptoms and situations. In many patients with a number of underlying conditions, symptoms can vary markedly and range from physical to psychological to spiritual. In this chapter, we will attempt to offer a framework for approaching patients with varied symptoms and will take a deeper dive into several common gastrointestinal symptoms: nausea and anorexia/cachexia. We will begin with a case to illustrate a too-common patient seen by clinicians caring for patients with cancer.

Mrs. A is a 72-year-old woman with metastatic adenocarcinoma of the lung diagnosed 18 months ago. She has a significant burden of metastatic disease in the liver and bones. Her past medical history includes diabetes mellitus type 2, hypertension, Meniere disease, anxiety, and a remote history of substance use disorder with tobacco, cannabis, and alcohol. She lives with her husband and two dogs several hours from your medical center. Her medications include third-line chemotherapy with recent disease progression, insulin, amlodipine, escitalopram, meclizine, and a recent initiation of oxycodone 5 mg up to six times daily begun by her local oncologist.

Mrs. A presents to the multidisciplinary palliative radiation clinic for evaluation by you. She complains of significant pain from a positron emission tomography (PET)-active humeral metastasis, nausea, breathlessness, poor sleep, loss of interest in activities, and a decreased appetite with weight loss. She notes that she just enrolled in a Phase II immunotherapy trial open at your institution. She reports that her team “feels confident that I am a good candidate,” though is tearful when she shares that she has been “praying every day that God does not forget me, but I worry he has.” When asked about goals of care, she describes a desire to be aggressive regarding disease-modifying therapies. She has never completed any advance directives, and her 82-year-old husband, her sole caregiver, reports feeling weary.

Mrs. A reports that her purpose in coming to your clinic is “to feel better” so that she can travel to see her first grandchild, who is due to be born in 3 months and will be named after her.

How will you approach this patient’s concerns and issues during your 60-minute visit?

Symptom assessment

Symptom assessment in PC can range from straightforward evaluation of mild pain to assessment of a multitude of severe symptoms across the physical, emotional, social, and spiritual domains. Symptoms commonly encountered by those with advanced illness include pain, anxiety, depression, dyspnea, nausea, diarrhea, constipation, insomnia, anorexia, and a host of others. Most of these symptoms are managed by primary or specialty care providers and teams using PC skills learned by all clinicians (termed primary PC).

In the past, specialty PC was utilized solely for those deemed to be in their final days (i.e., at the end of life). Over time, PC has been called upon by patients, referring clinicians, health systems, and private and governmental stakeholders to move further upstream and away from end-of-life symptom management alone. Unfortunately, there are not enough PC specialists to see all patients with PC needs; that gap is widening in Western countries as the populace ages. Given this growing mismatch between PC needs and a limited workforce to meet that need, a variety of medical and surgical providers, including specialists, will need to build and enhance their palliative skill sets.

One can imagine any clinician struggling to understand and prioritize the needs of a patient like Mrs. A. It is crucial for all clinicians caring for medically complex patients to develop a standardized approach to needs assessment, recalling that needs exist far beyond physical symptoms alone. There are described gaps in typical medical assessment, especially around diagnosing patient suffering and enabling participation with advance care planning.

Approach to palliative care symptom assessment

As with much in medicine, there are myriad ways to assess symptoms. Formal medical training to assess patients’ concerns often centers on a classical “History—Physical Exam—Differential Diagnosis” approach. This method is adequate for simple medical problems with linear trajectories that lead to treatments with straightforward algorithms. Unfortunately, patients with serious or advanced illnesses often have a number of complex, multifactorial problems with treatment options that require an understanding of patients’ goals, values, and preferences.

Given the challenges of symptom management and prioritization in serious illnesses, a standardized approach to assessing symptoms is crucial. It is important to remember that symptoms occur in a number of domains—physical, psychological, social, and spiritual among others. One can imagine that assessing all of these domains can take longer than a typical office visit. It is common for a PC assessment to spread across several visits, or require the input and expertise of multiple disciplines during a prolonged clinical encounter.

There are a number of standardized tools to assist clinicians in PC assessment. The Brief Pain Inventory (BPI), Memorial Symptom Assessment Scale, and revised Edmonton Symptom Assessment Scale are some assessment tools that are validated in the literature as appropriate in the PC setting. Many scales can be completed by patients before the clinical encounter ; for example, the National Comprehensive Cancer Newtork (NCCN) Distress Thermometer can be completed by patients or clinicians.

Physical symptom assessment

Physical symptoms are common in PC practice. Whether in the inpatient hospital, outpatient clinic, or home- or facility-based location, assessment and management of physical symptoms are a bedrock of PC clinical work. Physical symptoms managed by PC clinicians are broad and can include pain, dyspnea, anorexia, insomnia, fatigue, constipation, diarrhea, depression, anxiety, and pruritis among others.

It is crucial to approach physical symptom management with a standardized approach. The Edmonton Symptom Assessment Tool, for example, asks patients to rate on a scale of 1 to 10 their current symptom burden in the following domains: pain, tiredness, drowsiness, nausea, lack of appetite, shortness of breath, depression, anxiety, wellbeing, other.

Another approach, a mnemonic presented by UpToDate, encourages clinicians to remember the “PAIN RULES” and ask about P ain, A norexia, I ncontinence, N ausea, R espiratory symptoms, Ulcerations/Skin complaints, L evel of functioning, E nergy, and S edation/ S leep. For patients with multiple somatic complaints, especially those like Mrs. A above, maintaining a checklist to ensure that important symptoms are queried is critical to avoid missing potentially problematic concerns.

Once a physical symptom is encountered, the time-honored OPQRST approach should be employed to understand the o nset, p rovocation, q uality, r adiation, s everity, and t iming of the symptom. Some in PC encourage adding the letter “M” to the standard assessment to ask about the “meaning” of the symptom to the patient. For example, shortness of breath for a patient with lung metastases, even if the dyspnea is caused by fluid overload or deconditioning, could mean to the patient that her cancer is worsening and her time is short. Other authors, acknowledging the difficulties that substance use disorders can play in medical care, including for those with serious illness, have encouraged adding the letter “U” to the common mnemonic to ask about “Use of Substances” during the history of present illness to ensure considered treatments account for these potentially mitigating factors.

Psychological assessment

Psychological symptoms are very common in patients with serious illnesses. Those most commonly encountered and treated by PC providers are depression and anxiety. Sometimes these symptoms are impossible to miss, while other times, even seemingly well-regulated symptoms can impact the quality of life (QoL).

Given the emotional toll of both carrying and assessing psychological symptoms, a standardized assessment is valuable. Depression screening, once long and laborious, can be performed quickly. Efficient screening tools like the Patient Health Questionnaire 2 (PHQ-2), or simply asking the patient “Have you been depressed most of the time for the past two weeks?” can adequately screen for depression.

Anxiety is commonly encountered as well, particularly as illness worsens. Anxiety can also be a symptom of underlying anxiety disorder, stimulant abuse, hyperactive delirium, or undertreated pain. Commonly employed tools include the Patient Health Questionnaire 4 (PHQ-4) and the Generalized Anxiety Disorder 7-item scale (GAD-7). As with depression screening, a brief screening item, “Are you bothered by feeling nervous, anxious, or unable to stop worrying?” may be sufficient.

Other psychological symptoms that should be assessed in a comprehensive PC evaluation include coping (especially whether one’s lifelong coping mechanisms continue to serve them during their serious illness) and the presence of delirium, which can be easily performed during a clinical evaluation by using the Confusion Assessment Method.

Spiritual assessment

A critical part of the lives of many patients with serious illnesses involves being “right with God.” A broadly conceived spiritual history seeks an understanding about patients’ beliefs, values, and ability to find hope and meaning in illness. Spiritual history also recognizes the role of spirituality or religion in one’s life, examines the values of ritual and faith traditions, and seeks to understand the impact of illness on each person’s spiritual well-being. Several spiritual history and assessment instruments exist, including the F aith, I mportance of spirituality, spiritual C ommunity, A ddress spiritual needs (FICA), HOPE questions, ^a

a H = sources of H ope, strength, comfort, meaning, peace, love, and connection; O = the role of O rganized religion for the patient; P = P ersonal spirituality and practices; E = E ffects on medical care and end-of-life decisions.

, and F aith, A vailability, C oping, and T reatment (FACT) screening.

PC clinicians trained in medical specialties are often ill-equipped, even after a formal Hospice and Palliative Medicine fellowship year, to remedy symptoms of spiritual and existential distress. Rather than avoiding these topics, though, any clinician can perform a spiritual screening. Rather than a complicated assessment that may leave clinicians unsure of the next steps when questions lead to concerning answers, a spiritual screening can be as simple as one question, “Are you at peace?,” with responses in the negative leading to a referral to Spiritual Care and chaplaincy professionals.

Assessment of nausea/vomiting

Along with pain and constipation, nausea and vomiting (N/V) are among the most commonly encountered symptoms in PC. N/V can cause significant physical and psychological suffering and can dramatically decrease QoL. Nausea is formally defined as “the unpleasant feeling of the need to vomit,” while vomiting is “the forceful expulsion of gastric contents through the mouth.” These symptoms can be accompanied by retching or “dry heaves” in which the person appears or desires to vomit but nothing comes up.

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