Medical care depends on the traditional patient history and physical examination, an approach to patient assessment that has developed gradually over the course of the modern medical era. Variants that emphasize diverse aspects of a person’s situation are used in different disciplines in medicine, such as nursing, social work, and pastoral assessments. Furthermore, different specialties (e.g., family medicine, rehabilitation medicine, cardiology, and infectious disease) also use their own variants that emphasize different aspects of a person’s situation. Many components of patient assessment have been evaluated for efficacy. As a whole, however, the assessment has received sparse attention in research, and its variants are often not well codified or researched. Palliative care has adopted its own distinctive approach based on the whole-patient assessment. Early in the evolution of the discipline, the palliative care assessment was founded on its specific purposes, and soon thereafter on research.
Palliative care aims at improving the quality of both life and dying by ameliorating or relieving physical symptoms and psychological, social, and existential suffering for the patient and family within the community context. This comprehensive care is demanding in that it depends on global information. Palliative care professionals also assert that it is important to have some meaningful human interaction during the assessment, yet the practicalities of real-life care depend on efficient collection of concise information. Although these demands also characterize other areas of medicine, palliative care in particular emphasizes the global picture of human meaning in the setting of serious and terminal illness. In addition, palliative care tries to minimize uncomfortable physical examinations and inconvenient, expensive, or invasive tests by avoiding those that are unlikely to change the management plan. Because palliative care also specifies an interdisciplinary approach that can respond to a comprehensive assessment of needs, its assessments should be conducted in such a way that they can link directly to the interdisciplinary team’s care plan.
Palliative care has recently engaged in some of the research necessary to bring rigor to this comprehensive assessment of patients with advanced, life-limiting illnesses. This rigor has been made possible in part because palliative care is based on an articulated philosophy and framework of care that identifies domains of need. In what follows, the framework is described, followed by a description of how to approach comprehensive assessment in palliative care. The approach is based on both experience among the discipline’s experts and supportive evidence from research of its efficacy.
It may require two or more visits to complete the initial comprehensive assessment for the seriously ill patient because persons in this circumstance may have limited ability to interact, at least until the most consuming sources of suffering are controlled. Once the complete assessment is accomplished, it will need to be revisited on a regular basis with a brief screening question and a review of active concerns so that the whole picture is always retained as the most important guide to the continuously updated and tailored care plan.
Framework
The existence of a clear framework and of identified domains of experience in which suffering can occur has allowed systematic identification of areas that need assessment. The first study of the dying was conducted by William Oser at the turn of the twentieth century. These studies were to be of great interest to Cicely Saunders, who later defined the domains of need for the first decades of the modern hospice and palliative care movement. She defined the field as attending to what could become “total pain,” or pain in the physical, mental, social, and spiritual domains of experience. Beginning in the late 1990s, palliative care researchers began again to empirically identify domains of illness-related suffering, and areas within them, that constitute the components of the palliative care framework.
These empirical identifications were grounded in rigorously researched experiences of patients and family caregivers. They therefore differed from the origins of the traditional medical history, which evolved over time, mostly from the insights of physicians about the origin of illness, and in the modern era emphasized the biomedical aspects of the causes of illness. These palliative care studies were conducted on populations with serious and advanced illness, so they tend to apply more appropriately to patients facing the end of life than to those with better prognoses. Although differences existed among findings, they all confirmed that patient and family illness-related experiences were consistent with the whole-person, full-picture approach. More recent standards of care and clinical guidelines provide another source for identifying the content areas that should be included in a comprehensive assessment. These also use the whole-person, full-picture approach. Most recently, some research has become available on the feasibility, validity, and efficacy of systematic instruments to guide assessment. Those instruments that are validated for specific areas can be used if an overall evaluation so indicates. Some instruments also provide for an initial overall approach to guide more specific evaluations.
The Unfolding Approach: Screening Queries Guide Evaluative Questions
In all general assessments, the key is first to ask sensitive screening questions that will reveal the existence of needs in a general domain. This first step allows the clinician to judge whether an indication of need exists so additional time will not be wasted by asking further questions to which a negative answer is almost ensured. Conversely, if need is indicated, more evaluative questions are posed that become progressively more specific for a set of conditions that are among the possibilities raised by the detected need. Enough screening questions must be asked so, as often as possible, no relevant or important need is left undetected and yet no needless negative inquiry of a specific, evaluative kind is prompted. Decision sciences have underscored the reality that testing for something that is unlikely commonly leads to false-positive results. Poorly applied screening questions divert attention away from the real needs and require the expenditure of time, energy, and resources in populations that have little to spare, all in pursuit of irrelevant matters and possibly producing their own negative side effects.
The first systematic, comprehensive palliative care assessment was provided by Higginson. Originally named for its use as an outcomes scale, it is also offered as an assessment instrument and has shown acceptable reliability and validity as both a clinical assessment tool and an outcomes measure. Known as the Palliative Care Outcomes Scale, or POS, this instrument is a list of survey-type questions.
The next step in systematic, comprehensive assessment approaches involved the creation of a nested guide to the use of sensitive screening items that, when responded to in a way that indicates a need, lead to further, more specific, evaluative items for needs in the screened area. This approach was first reported in the field of geriatrics, another discipline that has promoted the comprehensive assessment, in the form of the nursing home Resident Assessment Instrument (RAI). In a parallel line of thinking in palliative care, the Needs at the End of Life Screening Test (NEST) was developed. A palliative care version of the RAI followed: the Resident Assessment Instrument for Palliative Care (RAI-PC). Other instruments are less comprehensive.
Linear survey-type approaches to caregiver comprehensive assessment are available, in addition to numerous caregiver outcomes assessment instruments that evaluate areas such as burden and gratification. An unfolding approach is under development in the form of the Multidimensional Aspects Related to Caregiving Experience (MARCE). MARCE also links to NEST, thus allowing coordinated assessments for the patient and caregiver with purpose-designed, partner instruments.
Because of their brevity, forms such as the POS or the initial screening questions from an unfolding instrument such as NEST or RAI-PC can be used not only for the patient intake comprehensive assessment but also for continuous assessment. A brief assessment for caregivers, such as that developed by Glajchen and associates or the MARCE, can be used for intake and update assessment of family caregivers.
Conducting the Comprehensive Assessment for the Patient
In starting a therapeutic relationship, the clinician should greet the patient and caregiver respectfully and should introduce himself or herself and use formal titles for all present. Although more a matter of suitable courtesy, the introduction can also provide something of a rapid screen for norms of communication, whether personal, family, or cultural norms, that should be observed to optimize the therapeutic alliance. The clinician can then ask, “Is there a different way you like to be addressed, or is [Mr/s ___] fine with you?” This inquiry can make future communication about how to discuss subsequent, more specific issues more comfortable.
The palliative care clinician should then learn about the disease, the history, and the clinical management approaches taken to date, including who has provided care and where it was provided. To make the process efficient, this information should be gathered from previous records whenever possible. However, a point should be made of asking the patient and family members what they know about the illness, its significance to them, and what they see as the issues that need attention. This will provide an initial insight into their understanding and how to communicate with them, and it may also indicate their priorities. It also communicates to them that their perceptions are important in guiding care. Overall, the face-time component of this start to comprehensive assessment can be brief, even for longstanding illnesses; the main goal of this phase of an initial palliative care assessment is to begin the relationship on a good footing, orient to the medical background, and ascertain the perceived situation.
Needs in the Social Domain
For efficiency, it can be helpful to ask screening questions in all the main areas before going to more specific evaluation questions. Both screening queries and deeper questions can be taken from the NEST or the RAI-PC. The clinician may want to start by memorizing the areas and questions. Eventually the questions will flow smoothly as part of a give-and-take interaction between the patient or family member and the clinician.
Functional and Caregiving Needs
Asking about day-to-day functioning and caregiving needs is a reasonable area in which to start an assessment. It is neither too personal nor too technical, and it affirms the nature of the therapeutic alliance, namely, to help meet their needs.
It is often fairly clear from a first visual impression of a person’s condition the level of assistance that will be needed with activities of daily living. A question such as “When you need help, how often can you count on someone for house cleaning, groceries, or a ride?” can screen for instrumental needs. A follow-up question such as “When you need assistance in bathing, eating, dressing, transfer, or toileting, how often can you count on someone being there for you?” can screen for needs with basic activities of daily living. This question may be asked in the past tense (“When you needed help, how often could you count on someone …?”) for patients who are in the hospital and are not expected to leave, because it will provide a gauge of how much stress existed in this area before the hospitalization. For patients who are expected to return home and who are being visited in another setting, asking them to describe their home will give further clues to functional and practical issues.
Isolation
From this point in the assessment, and especially if family members are not present, the atmosphere may be comfortable enough to screen for isolation with a question such as “How much do you have the sense of being acknowledged and appreciated?” or “In the last two weeks, how often would you say someone let you know they care about you?” Much of the ability to accept mortality, to rally despite the burden of illness, and to achieve the quality states of mind that can be attained by the terminally ill and their families probably depends on intergenerational and community visits. Therefore, assessment in this area is important.
Economic and Access Needs
The question “How much of an economic or financial hardship is the cost of your illness and medical care for you or your family?” screens sensitively for financial needs. Asking “How much of a problem have you had getting to see a specialist?” screens reasonably well for difficulty in accessing care. If it feels premature to ask these questions on a first visit, the clinician should follow his or her intuition; it will probably be seen as prying or too personal to the patient or family member as well. The question should be saved for another visit.
Needs in the Existential Domain
All people have a spiritual dimension in that we all relate in some fashion to the universe beyond us and have a reaction to knowing that we are mortal. Susceptibility to life-threatening illness is obvious to most patients in need of palliative care, and existential issues may have taken on new urgency. Approaches that worked for the patient while he or she was in good health may not be adequate for coping during serious illness. “How much does a spiritual or religious community help in your personal spiritual journey?” is a good screening question, both for unmet needs in that area and for the importance of spirituality to the person. The question “How much does your relationship with God contribute to your sense of well-being?” may seem not obviously relevant for nontheists, but nonetheless a negative answer, on empirical evaluation among patients in the United States near the end of life, appears to correlate with spiritual distress.
In addition, the question “How much have you settled your personal relationships with the people close to you?” screens for a sense of equanimity and a feeling of peace that people value highly near the end of life. The absence of such feelings may indicate need. The counterpart question “Since your illness, how much do you live life with a special sense of purpose?” screens for a sense of having a meaningful role in the current situation. This can be heightened rather than diminished near the end of life. A negative answer may also indicate need.
Symptom Management Needs
Physical and Mental Symptoms
A general question such as “How much do you suffer from physical symptoms such as pain, shortness of breath, fatigue, and bowel or urination problems?” can screen for any physical suffering. Asking “How often do you feel confused or anxious or depressed?” can screen for mental suffering. Because some patients tend to not report symptoms unless asked about the specific symptom, it is wise also to screen for the most common symptoms directly, at least until such point as a routine expectation allows the clinician to be confident that the patient will identify symptoms with a general prompt.
For a patient who is unlikely to be symptom free, it makes sense to skip directly to symptom-specific questions. The Edmonton Symptom Assessment Scale (ESAS) provides quick and sensitive screening questions for the 10 most common physical and mental symptoms among palliative care patients. This scale, designed for patients to fill out themselves, can be a time-saving approach if the patient is given the form ahead of time. If incorporating the ESAS into the verbal interview, the clinician should ask the patient to rate how he or she feels about each symptom on a scale of 0 to 10 (with 10 being the worst possible) and list the symptoms: painful, tired, nauseated, depressed, anxious, drowsy, (lost) appetite, (lost) feeling of well-being, and shortness of breath. At the end of the interview, the patient should be asked if there are any other physical symptoms.
The Therapeutic Alliance
Goals of Care
No amount of understanding of a person’s needs will result in an optimal care plan if that person’s goals for care are not understood. The clinician should screen right away, and then on a continuous basis, for any mismatch between goals and actual care, so the care can be progressively adjusted to meet the patient’s goals as much as possible. The clinician should ask a question such as “How much do you feel that the medical care you are getting fits with your goals?” If the answer is not the equivalent of “Completely,” then he or she should probe for and settle on realistic goals that are compatible with medical care so the team can consider how to adjust the care to meet the patient’s goals (see Chapter 4, Negotiating Goals of Care ). Goals change over time, depending on the physical realities and the mental, spiritual, and social circumstances of the patient.
Because goals do change and patients near the end of life can readily become too sick to communicate, inquiry about advance care planning is also necessary. As part of comprehensive assessment, it is sufficient to know if advance planning discussions or documents have been completed and, if so, whether changes have occurred since then (see Chapter 20 on Advance Care Planning ).
Therapeutic Relationships
As patients and caregivers become more dependent on medical care, the professional team becomes more and more a part of their day-to-day life. These relationships can have a profound impact on quality of life. Needs in this area should be screened for with questions that ask about the relationship, such as “How much do you feel your doctors and nurses respect you as an individual?” and about their information needs by using a question such as “How clear is the information from the medical team about what to expect regarding your illness?”
Probing Issues Raised on Screening
A focused inquiry begins once issues have been identified on screening. Selection of questions that have steadily increasing specificity while retaining as much sensitivity as possible will allow the clinician to zero in on the evaluation without missing related issues along the way. For instance, if a patient with abdominal pain is presented with questions related to cholecystitis but not questions related to adherence to the bowel regimen prescribed to go along with opioid use for bone pain, the clinician may miss the possibility of constipation. Similarly, consider a patient who responds to the screening question that his or her relationship with God does not contribute to his or her sense of well-being. If the clinician immediately infers that the patient needs a visit from the hospital chaplain, the clinician may miss something important, merely for lack of a suitable follow-up question. For example, a question about what does help may reveal that members of a local religious community can be of much greater help in identifying and fostering a resolution to, say, a ruptured family relationship that has been blocking spiritual peace. Similarly, for mental health symptoms and social needs, such poorly chosen questions can lead to wasted time and effort and possibly to negative impact from the ill-fitting diagnoses and interventions.
The unfolding screening-evaluation approach can be illustrated for any area, but it is described here in the area of symptom management. The general approach is as follows: Starting with the first layer of screening questions from an instrument such as NEST or RAI-PC, suppose that the clinician identifies symptoms that need further evaluation. The clinician therefore follows with questions taken from ESAS. Once a symptom has been clearly identified, the clinician can follow the recommendations for symptom evaluation outlined in specific chapters of this textbook and other palliative care resources. The Memorial Symptom Assessment Scale Short Form (MSAS-SF) covers 32 symptoms. After evaluation is complete and management is under way, the palliative care clinician can use the relevant MSAS questions for monitoring progress in symptom management over time.
To illustrate this point with specific questions, consider a patient who responds to the initial screening question for mental symptoms, “How often do you feel confused or anxious or depressed?” with “Most of the time.” The clinician can go on to ask each mental symptom question in the ESAS. If the patient’s responses indicate no problem except in relation to the question “How would you describe your feelings of depression during the last 3 days?” to which he or she answers “Very depressed,” then the clinician will continue to probe the history and possible sources of depression. In this situation, the clinician will also gather baseline answers to the questions in the MSAS-SF, by asking, for instance, “In the last week, how often have you felt sad? Rarely, occasionally, frequently, or almost constantly?” and then “How severe was it usually? Slight, moderate, severe, or very severe?” and finally, “How much did it distress or bother you? Not at all, a little bit, somewhat, quite a bit, or very much?” After treatment has begun, the clinician may repeat the last set of the MSAS-SF questions periodically to monitor the symptom and the efficacy of treatment. Analogous progression can be used for any physical or mental symptom. In sum, by using this approach the clinician will have efficiently moved from (a) the shortest available screening question set (e.g., from the NEST or the RAI-PC); to (b) intermediate questions (e.g., from the ESAS); then (c) in-depth evaluation questions and tests as needed; and finally to (d) a specific validated scale (e.g., the MSAS) for monitoring the progression of the symptom and its management.
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