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Overview of comprehensive patient assessment in palliative care

Overview of comprehensive patient assessment in palliative care
Authors:
Tomasz R Okon, MD
April Christensen, MD, MS
Section Editor:
Robert M Arnold, MD
Deputy Editor:
Jane Givens, MD
Literature review current through: Apr 2021. | This topic last updated: Jan 29, 2020.

INTRODUCTION — Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients who are facing a serious and/or life-threatening illness, as well as their families [1].

Palliative care aims to relieve suffering in all stages of disease and does not have to be limited to end-of-life care. Palliative care may be provided along with curative or life-prolonging treatments (figure 1). In keeping with the family-oriented approach, palliative care also extends to the family’s bereavement period.

In addition to symptom management, other objectives of comprehensive palliative support include establishing goals of care that are in keeping with the patient’s values and preferences; consistent and sustained communication between the patient and all those involved in their care; psychosocial, spiritual, and practical support both to patients and their family caregivers; and coordination across sites of care. (See "Benefits, services, and models of subspecialty palliative care", section on 'Definitions' and "Advance care planning and advance directives".)

Given the scope of palliative care, a unique approach to clinical evaluation is required. Although a comprehensive palliative assessment includes all the standard elements of a medical history and relevant aspects of the physical examination, it also extends beyond the traditional domains.

An overview of comprehensive patient assessment in palliative care is presented here, including the concept of "total pain" and its clinical ramifications, the adequacy of assessment of palliative care needs in this population, and the components of the comprehensive palliative assessment. Assessment methods designed primarily for care of actively dying patients or for research and quality improvement in palliative care are not discussed here; a more detailed review of the integrated care pathways for the actively dying, the approach to symptom assessment in palliative care patients, a general discussion of the benefits of palliative care, practical tips for discussing goals of care, and the philosophy and utilization of hospice care for patients with terminal illness are discussed separately. (See "Palliative care: The last hours and days of life", section on 'Integrated care pathways' and "Approach to symptom assessment in palliative care" and "Benefits, services, and models of subspecialty palliative care" and "Discussing goals of care" and "Hospice: Philosophy of care and appropriate utilization in the United States".)

SOURCES AND CLINICAL MANIFESTATIONS OF SUFFERING — The perception of discomfort and burden of illness among palliative care patients is highly individualized. To address the complexity of suffering, Dame Cicely Saunders, the founder of modern hospice and palliative care, introduced the term "total pain." Recalling one of her patient’s testimonies, "…The pain began in my back, but now it seems that all of me is wrong. My husband and my son were marvelous but they were at work and they would have to stay off and lose their money. Everything seemed against me and nobody seemed to understand…" Dr. Saunders observed that her patient’s pain included not only physical but also "…emotional and mental suffering, her social problems, and her spiritual need for security and meaning" [2]. Accordingly, the concept of "total pain," which provides a defining framework for patient assessment in palliative care, refers to the complex mechanisms and manifestations of suffering, including its physical, emotional, socioeconomic, and spiritual components.

Diversity of individual experience of suffering — A person's pain or malaise, their body image, the meaning they have of their illness, their desires, their relationships, and their values or spiritual beliefs all contribute to their experience of illness and suffering [3]. However, a precise, clinical taxonomy of suffering is not available [4] because total pain is constructed in a highly individual way. There is no single, good way of facing a serious illness; likewise, there is no single definition of what constitutes a "good" death [5].

Given the diversity of the individual experience of suffering, the specific palliative care needs and goals of individual patients are challenging to identify a priori or derive from population-based studies [6]. For instance, surrogates of critically ill patients form their own “clinical” impression based on, among others, idiosyncratic, non-clinical factors such as the surrogates’ own “gut feeling,” optimism, intuition, and faith [7]. Preferences about essential aspects of palliative care, such as extent and timing of prognostic disclosure [8,9]; provision of recommendations and degree of participation in medical decision-making [10-13]; cancer patient preferences for quality versus length of life [14,15]; and location of palliative care or place of death [16,17] vary between individuals and may evolve over time, underscoring the imperative that palliative assessment should be routinely addressed over time. It also emphasizes that clinicians should be cautious about generalizing palliative care needs from one patient to another. A structured palliative assessment helps clinicians identify personal values and beliefs and address incipient conflict about prognosis or intent of treatment. (See 'Illness understanding and care preferences' below.)

As an example, the design of the United States Medicare Hospice Benefit, seeking cost neutrality [18], preselects patients for home care and requires a focus on comfort measures rather than access to all available treatments. Yet the common preference for home-based comfort is far from universal, ranging from 31 to 87 percent for home as a preferred site of death [16]. Furthermore, in one study, as many as 48 percent of patients (versus only 5 to 7 percent of health care providers) considered access to all available treatments an important aspect of palliative care at the end of life, regardless of the chance of recovery [5].

The rank importance of common symptoms and care needs also differs between patients and their caregivers [19]. In one study, patients with inoperable lung cancer self-reported a number of distressing problems that were not included in comprehensive clinical or research symptom questionnaires [20]. In another, patients differed substantially from their physicians with regard to factors and priorities that impacted treatment decisions for their malignancy [21].

Other studies report that even the presence of a symptom as seemingly universally undesirable as pain is subject to individual interpretation and varying treatment preferences. One group found that only 29 percent of terminally ill patients who reported pain desired additional analgesic therapy [22].

A 2010 review of guidelines and policies from the United States, United Kingdom, Canada, and Australia found few uniform sets of fixed patient expectations and clinical standards for palliative care. The authors concluded that "palliative care staff have to continuously adapt their model of caring to the specific needs and values of each patient" [23].

Interpersonal sources of suffering — In addition to individual sources of suffering, palliative care patients face anticipatory grief, which often leads them to relate to their families, communities, and professional caregivers with strong emotions. While these relationships are commonly supportive and adaptive, the distress felt by each of these parties (ie, patient, family, and clinician) may negatively impact the others. As examples:

In the case of impending disease progression despite treatment, a patient’s hope and trust in their clinician may, due to countertransference, be inadvertently associated with the emergence of grief and self-doubt on the part of the clinician [24,25]. These emotions, in turn, may affect therapeutic decisions and wellbeing of the patient, family, and the clinicians themselves [26].

Oncologists may alter treatment decisions, experience an overwhelming sense of responsibility [27], and distance themselves or withdraw from both the patients and their families as the patient gets closer to death [28].

In another study, a stronger doctor­patient relationship was associated with lower prognostic accuracy on the part of the physician [29], a fact which could potentially alter a treatment plan. In a study of Medicare patients, individual physician characteristics (rather than the patients' medical comorbidity, age, race, or sex) had the strongest predictive value of the type of end-of-life care (eg, hospice versus intensive care unit [ICU] care) received by patients [30].

These findings illustrate the need for comprehensive evaluation of not only the patient but also their family, caregivers, and environment, as well as very close and ongoing introspection on the part of the clinician [31].

ASSESSMENT OF PALLIATIVE CARE NEEDS

Gaps in general medical assessment in palliative care patients — Traditional methods of clinical assessment (ie, the interview, physical examination, and diagnostic workup) and care planning frequently miss many target symptoms for palliative care management, particularly in diseases other than cancer [32,33]. Patients who have an advanced and/or life-threatening illness are frequently reluctant to discuss specific issues related to prognosis or advance care planning [34], while, on the other hand, clinicians who lack a comprehensive, structured assessment approach risk underdiagnosing suffering [19] and failing to discern actual patient needs [33] or preferences [35].

The discordance between patient-reported and clinician-documented symptoms was shown in a study that compared 58 questionnaires completed by patients with advanced cancer and their paired physician-completed medical records [36]. There was good concordance for pain (96 percent), but patients reported most other symptoms or problems more often than did their doctors (concordance rate 2 to 52 percent). The discordance, in turn, is associated with patient distress and poor quality of life [37].

Others have shown poor concordance between clinician and patient agreement on the salient aspects of the diagnosis [38], curability [39], and on whether or not end-of-life care options were discussed in patients with terminal illness [40]. In one report, oncologists caring for patients with metastatic cancer, whose subsequent median survival was six to seven months, discussed "wishes about the care they would want to receive if they were dying" with only 39 percent of the patients [41]. As a result, 32 percent of the patients received care that was not congruent with their preferences. The lack of structured discussion of prognosis or assessment of what the patient knows may lead to misunderstandings. Indeed, one study found that a majority of patients with incurable stage IV colon and lung cancer mistakenly believed that their malignancies were curable [42]. (See 'Ramifications of accurate illness understanding' below and "Approach to symptom assessment in palliative care", section on 'Introduction'.)

Collectively, these findings suggest that individual sources of suffering, preferences, and palliative care plans for specific patients can be formulated only through comprehensive and uniquely structured palliative assessment [23], which differs from traditional medical evaluation. Some data suggest that such a comprehensive approach improves the documentation of patient needs [43], but whether patient outcomes are improved remains unclear [44,45].

Unique aspects of palliative assessment — While there is a consensus on the domains of assessment, structure and process of care, and quality metrics for palliative care and clinical programs [46,47], a standard format of clinical palliative care assessment has not been established [23]. In general, while including the traditional components of medical evaluation (medical and psychosocial history, physical examination), comprehensive palliative assessment involves unique content, focus, and sources of information:

Content – Comprehensive palliative assessment includes six unique domains examined in a structured manner: 1) pain and other physical symptoms; 2) psychological, psychiatric, cognitive symptoms, and resources (coping); 3) illness understanding and care preferences (ie, personal goals, expectations, understanding of illness trajectory and risks versus benefits of therapies); 4) social and economic resources and needs of patients and caregivers, including for care in the home; 5) existential and spiritual concerns; and 6) continuity of and coordination of care across settings [46,48].

Focus – The unit of care in palliative care consists of both the patient and their family. Accordingly, comprehensive palliative assessment is patient-focused and family-oriented. In addition, the patient’s own frequently competing and evolving care preferences and goals, rather than solely pathophysiologic and clinical data, define the focus and organization of the assessment.

Sources and process for treatment planning – Rather than gathering information exclusively from the patient (or caregivers) and medical records, palliative evaluation utilizes a broad range of sources, each contributing to the final assessment. In an interdisciplinary manner, the clinician collaborates with nursing staff, chaplains, social workers, therapists, and nutritionists to perform discipline-specific evaluative tasks, together developing the comprehensive palliative assessment. Tasks that are best shared with expert non-clinician team members may include evaluation of existential and spiritual domains, economic needs, and care coordination; however, specific distribution will vary depending on local expertise.

The palliative assessment must be grounded in an attitude of openness towards the other person and being present to the other's suffering. When this occurs, the diagnostic evaluation itself may become a part of the therapeutic intervention [49]. This concept is embodied in the words of the Boston physician, Alfred Worcester, remarking on the care of the aged and the dying, who said, "In the practice of our art it often matters little what medicine is given, but matters much that we give ourselves with our pills" [50].

Good communication skills are necessary. While assessing symptoms and burdens in a focused manner, we recommend incorporating open-ended questions and actively listening to the answers after questions are asked. This process is aided by using empathic comments [51], reframing, speaking in the patient's own language and level of understanding, and exploring both the cognitive and emotional meanings of the response. Acknowledging and legitimizing the individual's values and concerns communicates respect, leads to an enhanced sense of dignity [52], and may reduce rates of anxiety and depression in patients and their relatives [53,54]. (See "The initial interview in palliative care consultation".)

Given its complexity, a comprehensive palliative assessment is rarely completed in one session, frequently extending over multiple encounters [55].

Identifying patients who need a palliative care assessment — A 2011 consensus statement from the United States-based Center to Advance Palliative Care proposed criteria for identifying patients in need of general palliative assessment at the time of hospital admission (table 1) [56]. Patients meeting these criteria should be evaluated by their principal hospital clinicians (or other members of the primary treatment team) to address some of the basic domains of palliative care (table 2). A subsequent referral for consultation and comprehensive assessment by a palliative medicine specialist should be obtained for problems that challenge the capabilities of the primary team. For instance, highly burdensome or refractory symptoms in a patient with an advanced serious or life-threatening illness (particularly pain, depression, anxiety, confusion, fatigue, breathlessness, insomnia, nausea, constipation, diarrhea, or anorexia) should prompt palliative care consultation. (See 'Physical symptoms' below.)

Analogous, detailed criteria for palliative care assessment and specialist referral are available for cancer patients, including those being cared for in the outpatient setting, from the National Comprehensive Cancer Network (NCCN) (table 3) [57].

DOMAINS OF PALLIATIVE ASSESSMENT — A comprehensive palliative assessment is rarely completed in one session and frequently extends over multiple encounters due to complexity of clinical content and time required to develop necessary rapport. To optimize time management, patient-completed (paper or electronic [58]) pre-consultation assessment forms can be utilized. An example of such a form, called the PEACE Tool (which assesses the physical, emotive, autonomy, communication, economic, and transcendent domains) is included as a table (table 4). Another commonly used form is the Integrated Palliative Care Outcomes Scale (IPOS).

Physical symptoms — A systematic review of studies focused on cancer, acquired immune deficiency syndrome (AIDS), heart disease, chronic obstructive pulmonary disease, and chronic kidney disease identified 11 of the most prevalent symptoms in patients with end-stage illness: pain, depression, anxiety, confusion, fatigue, breathlessness, insomnia, nausea, constipation, diarrhea, and anorexia (table 5) [59]. A mnemonic PAIN RULES (pain, anorexia, incontinence, nausea, respiratory symptoms, ulcerations, level of functioning, energy, and sedation) (table 6), derived from prevalence studies, is one convenient way to recall and target the critical symptom categories. In addition, items number 1 to 9 of one clinically available tool (table 4) also specifically evaluate the physical domain.

Each identified symptom should be further investigated in regard to its onset, palliating and provoking factors, quality, response to previous treatments as well as related factors/symptoms, severity and temporal characteristics, as well as the meaning of the symptom/burden to the patient (MOPQRST history structure, which is the traditional OPQRST history structure for defining a chief complaint plus M for the meaning of the symptom burden) (table 7). When consistent with the patient’s preferences, the etiology of the symptom(s) should be established in order to best palliate treatable conditions. A detailed pain history must be obtained to identify and treat discrete pain syndromes, when present. (See "Approach to symptom assessment in palliative care" and "Assessment of cancer pain" and "Overview of cancer pain syndromes" and "Assessment and management of dyspnea in palliative care" and "Overview of fatigue, weakness, and asthenia in palliative care" and "Assessment and management of depression in palliative care" and "Overview of managing common non-pain symptoms in palliative care".)

Comprehensive reviews of assessment tools and scales are available [60,61]. For clinical purposes, the Brief Pain Inventory (BPI and its short-form version [BPI-SF]), the revised Edmonton Symptom Assessment Scale (rESAS) (table 8) [62], or the Memorial Symptom Assessment Scale (MSAS) (figure 2) [63] are all reasonable tools. A consistent utilization of a 4-point grading scale (0 = none, 3 = severe) of the subjective burden of individual symptoms [64], distress thermometer [65], or Wong-Baker FACES Pain Rating Scale are also accepted strategies. (See "Approach to symptom assessment in palliative care", section on 'Assessment and rating instruments for symptoms'.)

The clinician must understand the patient's priorities and goals for symptom relief. A convenient way to elicit individual expectations is to ask the patient to rate their degree of distress on a scale [66] and determine their desired level of relief; this may be expressed either numerically, nominally, or in the acceptable level of interference in activities of daily functioning. Independent of rating intensity of symptoms, asking about and further assessing the patient's "most troublesome" symptom uncovers additional, and potentially more upsetting burdens in almost one-third of palliative care patients [67,68]. Burden prioritization can be streamlined with use of patient-completed responses, such as those included in the PEACE Tool (table 4).

Psychological, psychiatric, and cognitive symptoms — The key psychological symptoms requiring assessment are depression (as distinct from adjustment and grief), anxiety, delirium, and maladaptive coping with illness. Clinicians should screen for the multiple factors that increase the prevalence and/or severity of psychological distress (rapidly advancing disease, medications such as interferon or glucocorticoids, metabolic abnormalities, uncontrolled pain, impaired cognition, financial distress) and address them, if possible. Psychological distress frequently lessens with adequate pain relief [69]. Assessment tasks may be optimized with use of patient-completed preconsultation response inventories. One such tool used is included in the table (specifically, items 10 to 12) (table 4).

Depression — The spectrum of mood disorders and conditions seen in palliative care patients includes demoralization, normal grief reaction (including anticipatory grief), pathologic grief, adjustment disorder with depressed features, and minor as well as major depression. A summary of some of the contrasting characteristics of normal grief versus depression in terminally ill patients is provided in a table (table 9), and this subject is discussed in detail elsewhere. (See "Assessment and management of depression in palliative care", section on 'Assessment and diagnosis' and "Grief and bereavement in adults: Clinical features", section on 'Differential diagnosis'.)

Mood disorders are frequent in patients with a serious and/or life-threatening illness. As an example, in a meta-analysis, there was a 25 percent combined prevalence of all types of depression and 38 percent prevalence of mood disorders among palliative care patients [70]. The impact of mood disorders in palliative care is underscored by one study that found mortality rates in cancer patients are up to 25 percent higher in those who experience depressive symptoms [71].

A variety of abbreviated screening tools for depression are available (table 10). In general, abbreviated screening instruments, such as Patient Health Questionnaire (PHQ) 2 (table 11) or a single-item inquiry ("Have you been depressed most of the time for the past two weeks?"), appear to be as effective as longer instruments to screen for depression. Other simple screening strategies for mood disorder and psychosocial distress include PHQ-9 (table 12), the Distress and Impact Thermometer [72], or other ultra-short methods [73]. Importantly, these brief tools are designed for screening patients who may subsequently need a full diagnostic evaluation. The subject of screening for depression in palliative care patients is discussed in more detail elsewhere. (See "Assessment and management of depression in palliative care", section on 'Simple screening instruments' and "Approach to symptom assessment in palliative care", section on 'Sadness, grief, depression, and demoralization'.)

Demoralization, similar to depression, is characterized by loss of a direction, interest, or competent control over one’s future. Unlike depression however, demoralized patients remain capable of “in-the-present” pleasure (since the magnitude of their motivation is intact), and they perceive the source of distress outside of them [74]. The prevalence of demoralization is reported to be around 15 percent of cancer and palliative care patients [74]. A validated, self-reported measure of demoralization is the Demoralization Scale (DS) [75]. A shorter version of the DS, called the Short Demoralization Scale (SDS), has been developed for more rapid assessment [76].

Anxiety — Anxiety is common in patients with an advanced serious or life-threatening illness. Anxiety may also be the result of a preexisting anxiety disorder, substance abuse, delirium, or undertreated symptoms, most commonly pain. Significant factors that may exacerbate anxiety include concerns about future symptom control, the course of the disease, and other components of total pain. A screening item, "Are you bothered by feeling nervous, anxious, or unable to stop worrying?", can be utilized (see "Overview of anxiety in palliative care", section on 'Assessment'). The most commonly used tools for anxiety are the PHQ-4 for screening and the Generalized Anxiety Disorder 7-item scale (GAD-7) for further assessment.

Delirium — In advanced serious or life-threatening illness, delirium is common, but it is reversible in up to 50 percent of cases [77], underscoring the importance of early recognition and aggressive evaluation and management. A mnemonic FACT recalls the diagnostic criteria of delirium (see "Diagnosis of delirium and confusional states", section on 'Recognizing the disorder'):

Fluctuating cognitive deficit(s) with acute onset;

Attention deficits; and either

Consciousness level disturbance or

Thought disorganization

Several tools are available to screen for delirium including the Confusion Assessment Method (CAM), the bedside confusion scale (ability to recite the months backwards and assessment of consciousness state [78]), use of serial-sevens, and spelling a word such as "farm" or "world" backward. (See "Diagnosis of delirium and confusional states" and "Clinical features and diagnosis of psychiatric disorders in patients with cancer: Overview" and "Approach to symptom assessment in palliative care", section on 'Delirium'.)

Maladaptive coping — Coping refers to a patient’s adjustment and psychological rebalancing to manage a life-threatening illness. Adaptive processing of stressors may utilize a variety of factors and styles, including humor, acceptance, anticipation (planning, active management), disclosure and sharing with others/seeking support, positive reframing, sublimation, and suppression (distraction, compartmentalization) [79]. By contrast, maladaptive coping strategies may include denial, venting, disengagement and avoidance, self-blame, anxious preoccupation, and substance use, among others [80].

Ideally, adaptive coping results in enhanced functional, emotional, and spiritual wellbeing in spite of progressive illness. By contrast, maladaptive coping is associated with increased stress and higher burden of illness. In one study, approach-oriented coping (active coping, positive reframing, and acceptance) was associated with higher quality of life and reduced depressive symptoms among cancer patients receiving early palliative care [81]. A patient’s personality and native cultural paradigms can determine whether the emotion regulation style is adaptive or maladaptive.

A binomial categorization of coping styles into the so-called "monitoring" (attending to) and "blunting" (avoiding) styles used to be invoked [82], but there is little evidence that this characterization aids in clinical practice, except possibly in tailoring the amount of information to be shared with the patient [83].

However, in a study of breast cancer patients, expressive disclosure was associated with increased distress in those with baseline avoidance-oriented coping [84], while correct prognostic awareness (patient’s report of a terminally ill status) was associated with worse quality of life and greater depression [85].

Acknowledgment and experience of strong emotions associated with a life-threatening illness can contribute to adjustment, as long as those emotions are appraised by the patient and integrated into their subjective illness experience and narrative. A successful integration usually involves one of the adaptive coping processes (listed above). For instance, adaptive coping may involve expressive disclosure to friends/family, followed by reframing and/or seeking support. The clinician’s role is to evaluate and facilitate the best adjustment styles; the presence of adaptive coping should be explicitly noted and commented on by the clinician to reinforce positive coping patterns. Advanced cancer patients with dependent children require particular attention and support in regard to coping strategies, as they are at high risk for psychiatric comorbidities, poor quality of life, and increased use of non-beneficial, aggressive therapies [86].

Patients should be asked directly about their coping with the illness; general screening questions such as, "Have you had anything like this illness happen before? How have you coped in the past?" or "How are you getting through (coping with) this illness?" can be utilized. When the open-ended interview does not yield diagnostic information, focused questions, eg, "Does humor/planning/seeking help and support, etc, help you cope with your illness?", may aid in defining the patient's adaptive style. Additionally, the Mental Adjustment to Cancer (MAC) and Mini-MAC focus specifically on maladaptive coping [87-89].

Psychologic issues specific to caregivers — Psychological distress and coping among family and caregivers must be assessed as well. At least one study confirms increased mortality in caregivers who experience mental or emotional strain [90], while others report an increased risk of posttraumatic stress and prolonged grief disorders in family caregivers of patients with cancer who died in a hospital or an intensive care unit (ICU) versus at home [91].

Screening for psychological morbidities among caregivers can utilize the same items and approaches that are used for patient assessment. (See 'Depression' above and 'Anxiety' above.)

Unique family distress assessment items related to socioeconomic needs are listed below. (See 'Social and economic needs of patients and caregivers' below.)

Illness understanding and care preferences — This domain focuses on assessment of the patient’s degree of informed participation in decision-making and planning regarding their illness. A benchmark of good palliative care, known as goal-concordant care [92], is how well the administered therapies conform to the patient’s informed preferences/goals of care. Ethical and legal standards for discerning health care preferences of patients from the United States and most other Western countries are derived from the tradition of individual liberty and the corresponding principles of patient autonomy and informed consent. These subjects are discussed in detail elsewhere. (See "Informed procedural consent" and "Legal aspects in palliative and end-of-life care in the United States" and "Ethical issues in palliative care".)

An important aspect of this assessment is an evaluation of decision-making capacity. An overview of assessment of decision-making capacity is presented elsewhere and outlined in the table (table 13). (See "Assessment of decision-making capacity in adults", section on 'How to assess capacity'.)

Issues related to selection, appointment, limitations, and duties of surrogate decision-makers in the event that decision-making capacity is limited are discussed elsewhere. (See "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

For those patients with decision-making capacity, informed care preferences should be formulated in a genuinely shared effort of the patient and the clinician. First, a comprehensive review of medical records, the history, and the physical examination provides the palliative clinician with an accurate understanding of the patient’s illness and where it falls in the natural history of the condition. Prognosis and clinical trajectory, including complications, functional decline, and corresponding needs, must be anticipated. (See "Communication of prognosis in palliative care" and "Survival estimates in advanced terminal cancer".)

Thereafter, the patient’s and family’s understanding of the illness and preferences for extent of disclosure must be assessed. A dialogue, aimed at reconciling the clinical facts ascertained by the clinician and subjective hopes and expectations of the patient, should follow. In circumstances of gross misunderstanding of the prognosis, or dissonance between expectations and feasible outcomes, the clinician should, in a tactful manner that is respectful of the patient’s cultural norms and individual preferences for disclosure, counsel and educate the patient and family. Lastly, the clinician should explore individual views on the level of minimum acceptable function (versus unacceptable impairment), therapeutic trade-offs (longevity versus quality of life), and wishes for family involvement [93].

Patients’ values and preferences, prognostic awareness as well as understanding of the illness trajectory, and treatment should be systematically assessed (table 14). Other models to guide the conversation about goals of care, including the REMAP stepwise approach, are available. (See "Discussing goals of care", section on 'REMAP: A stepwise approach'.)

A related assessment and counseling process, known as advance care planning, which is undertaken prospectively and sometimes ahead of serious illness, may result in preparation of documents such as an advance directive, living will, and/or appointment of a health care proxy. Helpful exploratory questions that can be used in the advanced care planning process are outlined in a table (table 15) [94].

Structured approaches to discerning and documenting patients’ preferences and advanced care planning exist. Some, such as the physician orders for life-sustaining treatment (POLST), are intended for use by physicians and physician extenders, while others may be disease specific or involve periodic assessments by non-clinician facilitators [95].

Given the degree of instability of prospective care choices over time, as well as limited applicability or access to the advance care planning documents at the time of a crisis, an "in-the-moment" approach to discerning care preferences may be needed [94]. The subject of advance directives is addressed in detail elsewhere. (See "Advance care planning and advance directives".)

Ramifications of accurate illness understanding — In the past, many clinicians assumed open and honest communication about advanced illness would risk exacerbating a patient’s psychological distress by "denying hope" [96]. (See "Discussing serious news", section on 'Impact of communicating serious news on patients and clinicians'.)

However, research has suggested the opposite: most patients with cancer state a preference for disclosure about treatment options, benefits, and burdens, as well as involvement in shared decision-making [97,98]. Not only do patients with advanced cancer prefer tactful and timely disclosure [99-101], but nondisclosure is associated with a lower quality of life, higher rates of major depression in survivors, and greater utilization of non-beneficial intensive care [101,102]. Furthermore, such aggressive end-of-life care may be associated with worse end-of-life care quality and a lower likelihood that care that is received will be consistent with their preferences [103]. (See "Discussing serious news", section on 'Patients’ preferences when receiving serious news'.)

However, even with disclosure, major challenges to making genuinely informed health decisions in palliative care remain. As an example, clinicians caring for patients with advanced cancer tend to overestimate prognosis [29]. Integration of clinician estimates with predictors such as performance status and clinical signs and symptoms (eg, in the Palliative Prognostic Index (table 16)) may improve survival predictions. (See "Survival estimates in advanced terminal cancer", section on 'Accuracy of survival estimates'.)

Furthermore, patients with advanced, life-threatening illness and their surrogates [104] also frequently overestimate prognosis, which can affect treatment choices. As an example, among cancer patients, the more optimistic the expectation, the greater the likelihood of selecting aggressive treatments that do not improve survival [105,106] and which may worsen quality of life [107]. Chemotherapy at such late stage is reportedly intended by oncologists to maintain patient hope, even though actual benefit is not expected [27]. One study demonstrated that a majority of patients with incurable stage IV colon and lung cancer mistakenly believed that their malignancies were curable [42]. Similar overestimates of survival have been reported among patients with respiratory failure [108], heart failure [109], and among the parents of children with cancer [110]. (See "Survival estimates in advanced terminal cancer", section on 'Accuracy of survival estimates' and "Communication of prognosis in palliative care", section on 'The science of estimating prognosis'.)

By contrast, other patients may hold excessively pessimistic views about their own adaptability and future quality of life, thereby risking premature limitation of care [111]. These findings underscore the need to assess and correct for cognitive and emotional biases of patients and their families, which, if not elucidated, could compromise the patient’s autonomous self-determination in palliative care.

Social and economic needs of patients and caregivers — Patients with advanced illness and their caregivers frequently experience profound financial and social strain [112]. Family and friends provide most of the assistance to terminally ill patients, for a mean of 43 hours per week [113]. Almost one-third of the families of seriously ill adults report loss of all or most of their savings due to the illness and need for caregiving [114]. Furthermore, economic burden may profoundly impact health care decisions. In one study, economic hardship on the family was associated with a preference for comfort care over life-extending care [115]; in another, substantial caregiving needs were associated with terminally ill patients being more likely to consider euthanasia or physician-assisted death [116].

Initial screening can utilize patient-completed preconsultation responses, such as the PEACE Tool, which specifically queries about these issues in one question (item 15) (table 4). Additional items probing socioeconomic distress include:

"What kind of help do you need at home? Cooking and shopping? Help with your medications? Getting around the house? Transportation to appointments? Additional equipment or supplies?"

"Has your illness created a financial strain on you and your family?"

"Do you worry that you may become a burden to your family?"

"How much of a mental or emotional strain is it on you to either provide the help directly, or to arrange for help to be provided [for this activity]?" (See "Psychosocial issues in advanced illness", section on 'Economic circumstances'.)

Religious, spiritual, and existential (transcendent) issues — An impending health crisis occasions a patient’s examination of personal values, relationships, and the meaning of life and death. Life-threatening illness evokes questions like "Why me?" and "Is there anything that transcends death?" Therefore, in addition to assessing spirituality and religious beliefs, the tasks of palliative evaluation, as enumerated in the Clinical Practice Guidelines for Quality Palliative Care of the National Consensus Project for Quality Palliative Care (NCP), include an assessment of hopes and fears, meaning, purpose, beliefs about afterlife, guilt, forgiveness, and life review and completion. Open-ended questions such as “Are you at peace?” or “What do I need to know about you as a person to give you the best care possible?” may facilitate initial assessment in this domain [117].

Many patients hold denominational beliefs that can profoundly impact medical care, including transfusions, mechanical ventilation, hydration and nutrition, the role of miracles, or physician-assisted death. For instance, a high level of relying on religious faith to cope with cancer has been associated with utilizing more ICU care near death [118]. Since the majority of oncologists do not accept that it is their role to provide spiritual care [119], it is imperative that a structured palliative assessment probe spiritual/existential beliefs and guide shared clinician-patient decision making.

Along with the prescriptive impact of religious tenets, most cancer patients endorse the importance of religion in coping with their illness; accordingly, patients who pray or meditate, and those visited by a pastor, report higher quality of life [120]. Many, however, report insufficient levels of spiritual support from their communities and the medical system [121] in the last weeks of life, a characteristic associated with increased likelihood of receiving aggressive, non-beneficial end-of-life measures [122]. (See "Overview of spirituality in palliative care" and "Psychosocial issues in advanced illness", section on 'Hope' and "Psychosocial issues in advanced illness", section on 'Spiritual beliefs and religious community'.)

Thus, screening for spiritual relevance or unmet needs, followed by a spiritual history and a spiritual assessment, are recommended in guidelines from the Consensus Conference on Quality of Spiritual Care as a Dimension of Palliative Care [123].

Initial screening may utilize questions such as:

"Are spirituality or religion important in your life?" (relevance);

"Are your religious/spiritual needs being supported?" (needs) [121]; or

"Are you at peace?" [124]

Several formal tools (RBEC scale, FICA, SPIRIT, HOPE) explore religious beliefs and spiritual history (table 17), a task assigned by the Consensus Conference to the principal clinician or a counseling social worker [123]. These instruments standardize assessment of common spiritual themes, identified through qualitative studies [125,126].

The final step, spiritual assessment, is best completed by a trained chaplain/counselor and accomplished with open dialogue and empathic listening. It may include exploratory and interpretive questions such as: "Where do you find the strength to face your illness? Are you frightened by thoughts of dying? Do you ever wonder whether God has abandoned you? Has your faith/religion ever caused you stress or conflict?"

Validated semi-structured approaches to assess unmet needs, such as the Spiritual Distress Assessment Tool (SDAT) [127], or religious beliefs impacting patients' terminal illness understanding and acceptance, such as the RBEC scale [126], are available. Distress screens, such as the PEACE Tool (item 16), may help to identify spiritual needs and aid in the optimization of time management during the consultation (table 4).

Clinicians should be particularly sensitive to comments that might indicate spiritual distress. Often, patients express spiritual need with comments that hint at an underlying fear, despair, guilt, desire for a hastened death, or hopelessness. For instance, prior history of faith/religion-related conflict or stress is associated with increased symptoms of anxiety and depression in patients with advanced illness [128]; this might lead to refusal of potentially effective therapies, on the one hand, or insistence on non-beneficial interventions, on the other.

To assess the transcendent needs of nonreligious or nonspiritual patients requires a particular sensitivity [129]. Concerns of atheist patients are frequently of a moral and/or humanistic nature and can be evaluated, as long as the provider maintains respect for rationalism and nonbelief and withholds references to God. An interview question such as "This sort of illness often raises significant questions… How are you dealing with this?" communicates compassion and concern while facilitating assessment.

Another aspect of transcendent domain assessment pertains to life review. Common themes include completion of life affairs, contribution to others, and legacy; concern for these tasks emerges with the diagnosis of a life-limiting illness [130]. Assessment and facilitation of life review can be deployed as a sequence of assessment questions and facilitated patient’s answers, a process akin to Dignity Therapy [131] (see "Assessment and management of depression in palliative care", section on 'Existential psychotherapy'):

"How would you want to be remembered?" "What do you feel most proud of (in your life)?"

"Do you feel prepared for what is still ahead of you? What do you still want to accomplish in your life?"

"Have you been able to share important lessons, thoughts, and things with others?" "Are there particular things you feel still need to be said to your loved ones?"

Clinicians must recognize, however, that patients may not wish to speak to their doctors about these matters.

Care coordination and continuity — Health care transitions risk fragmentation and duplication of care while increasing the potential for medical error [132]. Among older patients with cognitive problems, burdensome transitions (defined as those occurring in the last three days of life, involving transfer between multiple care facilities, or including multiple hospitalizations in the last 90 days of life) are associated with poor outcomes such as increased ICU care in the last month of life and increased complications, such as pressure ulcers [133]. Similar shortcomings, attributable to discontinuity of care, have been identified in patients with lung cancer [134].

Comprehensive palliative care assessment should discern what transitions are avoidable and how to better coordinate care to avoid trauma, confusion, and unwanted treatment. This task requires facilitation of advance care and discharge planning. One qualitative study suggested three concerns requiring assessment prior to hospital discharge or other transitions [135]:

Discernment of patient and family understanding of the condition and prognosis and tactful clarification if gaps are identified (see 'Illness understanding and care preferences' above)

Reassessment of ongoing symptom burden with individual therapeutic plan(s) for relief (see 'Physical symptoms' above and 'Psychological, psychiatric, and cognitive symptoms' above)

Identification of a communication chain (who to call with what kind of concerns) and follow-up plan

Care coordination should involve clinicians as well as non-clinician members of the interdisciplinary team, such as advanced-practice nurses [136], transition coaches [137], or case managers and social workers. Resources are available to facilitate care transitions from the Care Transitions Program [138,139].

DOCUMENTATION — Documentation of the comprehensive palliative consult includes summaries of all six domains described above, ideally, structured and organized according to the subjective order of burden of each of the symptoms. A repository of documentation forms can be found at the Center to Advance Palliative Care CAPC website. The 10 principles of effective consultation [140] are directly applicable to the conduct and documentation of palliative consultations (table 18) [141].

GUIDELINES AND TOOLS — Several guidelines pertaining to overall palliative patient assessment are available.

National Comprehensive Cancer Network — General palliative care assessment guidelines for cancer patients, available from the National Comprehensive Cancer Network (NCCN), suggest inclusion of benefits/risks of anticancer therapy, physical symptoms, psychosocial distress, personal goals and expectations, education and informational needs, and cultural factors affecting care. They also provide criteria for early consultation with a palliative care specialist (table 3) [57]. (See 'Identifying patients who need a palliative care assessment' above.)

National Consensus Project — Guidelines for palliative care assessment, which are applicable to disease other than cancer, are available from the National Consensus Project for Quality Palliative Care (NCP). The assessment domains include the structure and processes of care and physical, psychological/psychiatric, social, spiritual/religious/existential, and cultural aspects of care.

Use of tools to guide assessment — Several structured assessment methods have been proposed, including electronic collection of assessment data and methods to notify the clinician of patient distress [58,60,142]. Specific assessment tools for physical symptoms in palliative care patients are discussed in more detail elsewhere. (See "Approach to symptom assessment in palliative care", section on 'Assessment and rating instruments for symptoms'.)

Controlled trials of care guided by at least one validated assessment tool, the Needs At the End-of-Life Screening Tool-13 (NEST13+), were able to detect unaddressed needs in cancer care settings, although detection did not carry through to demonstrated improvements in clinical outcomes [44,142]. Each domain of the NEST13+, in turn, has inventory subcategories (analogous to the traditional review of systems) to help elaborate the patient's distress and needs.

The Integrated Palliative care Outcome Scale (IPOS) [143] reliably explores and records multiple symptoms and domains of burden across a broad range of conditions and has been validated in many languages [144].

Other examples of comprehensive assessment and documentation tools include:

Patient-Reported Outcomes Measurement Information System (PROMIS [145]), as developed by the National Institutes of Health (NIH) (see "Evaluation of health-related quality of life (HRQL) in patients with a serious life-threatening illness", section on 'Combined instruments for patient-reported outcomes')

Your Symptoms Matter symptom assessment tool, developed and hosted by Cancer Care Ontario

The revised Edmonton Symptom Assessment Scale (rESAS) (table 8) [62]

The NCCN Distress Thermometer [146]

E-MOSAIC [147]

A specific tool to guide the discussion on goals of care (table 14) (see "Discussing goals of care", section on 'A suggested approach to discussing goals of care')

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

SUMMARY

For patients with an advanced, serious, and/or life-threatening illness, palliative care is an interdisciplinary collaboration that focuses on patient-defined goals of care and relief of the patient’s and family's distress. While palliative care used to be seen as care that was provided for people who were not receiving any active treatment for advanced illness, and were in fact dying of their disease, the principles of palliative care are equally applicable to early-stage, potentially curable disease. Outside of the Medicare Hospice Benefit, palliative care can and should be provided alongside disease-modifying treatment. (See 'Introduction' above.)

Perceptions of discomfort and burden of illness among palliative care patients are highly individualized. "Total pain" describes the complex etiology of pain, including its physical, emotional, social (including economic), and spiritual components. Besides pain, personal suffering can also be influenced by an individual’s body image, their sense of the past and/or future, the meaning they have of their illness, their desires, their relationships, their values, or their spiritual beliefs. (See 'Sources and clinical manifestations of suffering' above.)

Consensus-based guidelines are available to identify patients in need of general palliative assessment at the time of hospital admission (table 1). Analogous, detailed criteria for palliative care assessment and specialist referral are available for cancer patients, including those being cared for in the outpatient setting, from the National Comprehensive Cancer Network (NCCN) (table 3) [57]. (See 'Identifying patients who need a palliative care assessment' above.)

Given the scope of the palliative care needs that arise in patients with an advanced, serious, and/or life-threatening illness, optimal care requires a unique evaluative approach. The domains of the comprehensive palliative assessment include physical symptoms; psychological/psychiatric and cognitive symptoms; illness understanding and care preferences; social and economic needs; existential, religious, and spiritual issues; and care coordination and continuity. (See 'Domains of palliative assessment' above.)

Systematic comprehensive approaches are preferred. However, a comprehensive palliative assessment is rarely completed in one session, frequently extending over multiple encounters and involving non-clinician interdisciplinary team members. (See 'Unique aspects of palliative assessment' above.)

Documentation of the comprehensive palliative consult includes summaries of all six domains described above. (See 'Documentation' above.)

General palliative care assessment guidelines are available from the NCCN [57] and the National Consensus Project for Quality Palliative Care (NCP) [148]. In addition, several structured assessment tools are available to guide patient assessment (see 'Guidelines and tools' above). The subject of symptom assessment in palliative care patients is addressed in detail elsewhere. (See "Approach to symptom assessment in palliative care".)

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  106. Wright AA, Zhang B, Keating NL, et al. Associations between palliative chemotherapy and adult cancer patients' end of life care and place of death: prospective cohort study. BMJ 2014; 348:g1219.
  107. Prigerson HG, Bao Y, Shah MA, et al. Chemotherapy Use, Performance Status, and Quality of Life at the End of Life. JAMA Oncol 2015; 1:778.
  108. Cox CE, Martinu T, Sathy SJ, et al. Expectations and outcomes of prolonged mechanical ventilation. Crit Care Med 2009; 37:2888.
  109. Allen LA, Yager JE, Funk MJ, et al. Discordance between patient-predicted and model-predicted life expectancy among ambulatory patients with heart failure. JAMA 2008; 299:2533.
  110. Mack JW, Cook EF, Wolfe J, et al. Understanding of prognosis among parents of children with cancer: parental optimism and the parent-physician interaction. J Clin Oncol 2007; 25:1357.
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  112. McPherson CJ, Wilson KG, Murray MA. Feeling like a burden to others: a systematic review focusing on the end of life. Palliat Med 2007; 21:115.
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  116. Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA 2000; 284:2460.
  117. Chochinov HM, McClement S, Hack T, et al. Eliciting Personhood Within Clinical Practice: Effects on Patients, Families, and Health Care Providers. J Pain Symptom Manage 2015; 49:974.
  118. Phelps AC, Maciejewski PK, Nilsson M, et al. Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer. JAMA 2009; 301:1140.
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  123. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med 2009; 12:885.
  124. Steinhauser KE, Voils CI, Clipp EC, et al. "Are you at peace?": one item to probe spiritual concerns at the end of life. Arch Intern Med 2006; 166:101.
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Topic 2197 Version 51.0

References

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77 : Treating an established episode of delirium in palliative care: expert opinion and review of the current evidence base with recommendations for future development.

78 : Attention! A good bedside test for delirium?

79 : The Defense Style Questionnaire.

80 : You want to measure coping but your protocol's too long: consider the brief COPE.

81 : Role of Patient Coping Strategies in Understanding the Effects of Early Palliative Care on Quality of Life and Mood.

82 : Styles of coping with threat: implications for health.

83 : Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease. Implications for cancer screening and management.

84 : Randomized, controlled trial of written emotional expression and benefit finding in breast cancer patients.

85 : Coping and Prognostic Awareness in Patients With Advanced Cancer.

86 : Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children.

87 : Patients' adjustment to cancer: the Mental Adjustment to Cancer (MAC) scale vs clinical ratings.

88 : The Mini-Mental Adjustment to Cancer (Mini-MAC) scale: construct validation with a Greek sample of breast cancer patients.

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90 : Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.

91 : Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health.

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104 : Prevalence of and Factors Related to Discordance About Prognosis Between Physicians and Surrogate Decision Makers of Critically Ill Patients.

105 : Relationship between cancer patients' predictions of prognosis and their treatment preferences.

106 : Associations between palliative chemotherapy and adult cancer patients' end of life care and place of death: prospective cohort study.

107 : Chemotherapy Use, Performance Status, and Quality of Life at the End of Life.

108 : Expectations and outcomes of prolonged mechanical ventilation.

109 : Discordance between patient-predicted and model-predicted life expectancy among ambulatory patients with heart failure.

110 : Understanding of prognosis among parents of children with cancer: parental optimism and the parent-physician interaction.

111 : Affective forecasting: an unrecognized challenge in making serious health decisions.

112 : Feeling like a burden to others: a systematic review focusing on the end of life.

113 : End-of-life care: findings from a national survey of informal caregivers.

114 : The opportunity costs of informal elder-care in the United States: new estimates from the American Time Use Survey.

115 : Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? SUPPORT Investigators.

116 : Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers.

117 : Eliciting Personhood Within Clinical Practice: Effects on Patients, Families, and Health Care Providers.

118 : Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer.

119 : Whose role? Oncology practitioners' perceptions of their role in providing spiritual care to advanced cancer patients.

120 : Factors important to patients' quality of life at the end of life.

121 : Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life.

122 : Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life.

123 : Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference.

124 : "Are you at peace?": one item to probe spiritual concerns at the end of life.

125 : "If God wanted me yesterday, I wouldn't be here today": religious and spiritual themes in patients' experiences of advanced cancer.

126 : A scale to assess religious beliefs in end-of-life medical care.

127 : Validation of the Spiritual Distress Assessment Tool in older hospitalized patients.

128 : Which domains of spirituality are associated with anxiety and depression in patients with advanced illness?

129 : End-of-life preferences for atheists.

130 : Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial.

131 : Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life.

132 : The incidence and severity of adverse events affecting patients after discharge from the hospital.

133 : End-of-life transitions among nursing home residents with cognitive issues.

134 : Continuity of care and intensive care unit use at the end of life.

135 : Discharge planning for palliative care patients: a qualitative analysis.

136 : Comprehensive discharge planning and home follow-up of hospitalized elders: a randomized clinical trial.

137 : The care transitions intervention: results of a randomized controlled trial.

138 : Preparing patients and caregivers to participate in care delivered across settings: the Care Transitions Intervention.

139 : The care transitions intervention: a patient-centered approach to ensuring effective transfers between sites of geriatric care.

140 : Principles of effective consultation: an update for the 21st-century consultant.

141 : Principles of effective consultation: an update for the 21st-century consultant.

142 : Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life care screening tool.

143 : Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life care screening tool.

144 : A Systematic Review of the Use of the Palliative Care Outcome Scale and the Support Team Assessment Schedule in Palliative Care.

145 : The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years.

146 : The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years.

147 : The effect of real-time electronic monitoring of patient-reported symptoms and clinical syndromes in outpatient workflow of medical oncologists: E-MOSAIC, a multicenter cluster-randomized phase III study (SAKK 95/06).