An Integrative Framework of Appraisal and Adaptation in Serious Medical Illness

Abstract

Multiple randomized clinical trials have demonstrated that palliative care improves the quality of life of individuals with serious medical illness. Research also suggests that in patients with advanced cancer, palliative care’s focus on symptom management, coping with illness, goals of care, and treatment decisions may be associated with improved patient quality of life in part by increasing patients’ use of active (versus passive) and approach-oriented (versus avoidant) coping strategies. However, without a framework outlining the process that individuals with serious medical illness and their loved ones undergo, it is challenging to discern exactly where, how, and why palliative care may affect the serious medical illness experience. To address this gap, we propose a clinically applicable framework, derived from existing theory and research in the social and behavioral sciences. This framework, called the Integrative Framework of Appraisal and Adaptation in Serious Medical Illness, describes how patients and their loved ones cognitively and emotionally process the various events that may occur as they navigate serious medical illness and the end of life. The framework also describes how individuals and their loved ones use that event processing to determine next steps, while considering the impact of their surrounding external environment, their individual social roles and their connections on this decision making. The framework presented in this article is intended to improve our ability to understand and to care for individuals with serious medical illness and their loved ones, while stimulating further discussion and research to test and refine these ideas.

I. Introduction

As defined by the National Quality Forum (a United States based organization focused on improving healthcare measurement, quality, and outcomes), palliative care assesses and addresses physical, intellectual, social, emotional, and spiritual needs and “optimizes quality of life by anticipating, preventing, and alleviating suffering throughout the continuum of an individual’s illness.”(1) Evidence supports that palliative care improves symptom control and improves quality of life in patients with advanced cancer,(2–5) in heart failure,(6, 7) in advanced neurodegenerative disease,(8) and in patients with human immunodeficiency virus.(9, 10) However, there are few mechanisms or theories to explain ‘how palliative care works.’(11–13) Endeavoring to derive palliative care’s mechanism of action in advanced cancer patients, a prior qualitative analysis of key elements of specialty palliative care visits described the following specific elements: managing symptoms, strengthening coping, and cultivating illness understanding and prognostic awareness.(13) Of these elements, a focus on the latter two, including coping, treatment decisions, and advance care planning were most associated with improved patient outcomes in depression and in quality of life.(11) Specifically, these improvements appeared to be mediated by increases in approach-oriented coping (active coping, positive reframing, acceptance),(12) that were associated with receipt of palliative care.

To better understand how coping helps patients with serious medical illness and to better consider the mechanisms by which palliative care may improve patient outcomes beyond symptom control, we have examined and considered a wide range of existing social and behavioral theories and research (details in Appendix A). Here we present a summary of our findings, a framework depicting how patients and their loved ones interpret and mentally process the events occurring in serious medical illness, and subsequently determine a course of action. We also consider the potential impact of the larger ecosystem around the individual, including social contexts and the remaining external environment, along with the impact of any unmet needs on this event processing. By enhancing our understanding of the social and behavioral theories and research describing the serious medical illness experience and subsequently incorporating this knowledge into our daily practice, we may strengthen our ability to recognize where patients are struggling in this process, thus improving our ability to target our interventions to assist them.

II. An Integrative Framework of Appraisal and Adaptation in Serious Medical Illness

Our proposed framework is primarily based on the transactional theory of cognitive appraisal, stress and coping,(14) which was later expanded to include adaptation.(15) To this theory of appraisal and adaptation,(14–16) we have added research in meaning,(17–19) social support,(20–25) resiliency(26–34) and the impact of unmet needs and stress on learning.(35–42) We believe that our resulting framework is useful in not only describing the various cognitive and emotional steps that patients and their loved ones may take as they navigate through their serious medical illness experience, but also in highlighting where palliative care clinicians could potentially impact important outcomes throughout the course of serious medical illness.

II.A. Initial interactions: greater environment, event, and individual

To illustrate the proposed framework, consider an individual receiving the news of an advanced cancer diagnosis for the first time. This is depicted at the center of Figure 1 with the individual (orange) and the event (receipt of advanced cancer diagnosis - gold) surrounded by the greater environment (green) in which the event is occurring. A key aspect informing how that individual processes the cancer diagnosis news is the greater environment in which this event is happening, including the physical location and perceived characteristics of this environment. The greater environment, also called an ecosystem, surrounds both the event and the individual, and there are bidirectional arrows indicating the interactions between the individual, the greater environment and the event itself. The greater environment consists of anything external to the individual, including connections to other people or organisms, and the remaining external environment, such as the conditions (hot/cold, light/dark) and the surrounding objects. In this hypothetical example, part of the external environment is the clinic in which this visit is occurring. The clinic may be perceived by the individual as safe and comforting, harsh and alienating, or somewhere in between. The individual may also have one or more social roles or relationships that impact the event, also called social contexts. Social contexts are external to the individual and are separate from the external environment. Further details about factors in the greater environment that may impact this appraisal process are outlined in the green text box in the bottom right corner of Figure 1.

Figure 1.

Primary appraisal of an event or stressor in serious medical illness.

In Figure 1 the gold event text box describes various characteristics about the event itself, such as whether this event was unexpected and how the news was delivered. If the news was delivered abruptly (event) in a cold and unfamiliar clinic (environment), the individual might interpret the news differently from news delivered thoughtfully in a welcoming and familiar clinic. In addition, social context in the greater environment may also impact the event interpretation, such as any prior relationship between the individual and the provider delivering the news, or if the individual has a support person present for the visit.

Personal characteristics also inform how this event is interpreted. Within the individual there are two dimensions of personal characteristics, long-term characteristics and short-term or temporary characteristics, detailed in the upper left orange text box. To help differentiate these two dimensions, we label the long-term group an individual’s Core Orientation System (COS).(17, 19, 43–53) The Core Orientation System serves as an important and constant reference point for all of the appraisal steps in the framework. The Core Orientation System is a multi-faceted repository of genetic and intrinsic personal characteristics; accumulated knowledge, experience, and learning; preferences and learned behavior; long-held beliefs about health, human interaction, attachment, and self-efficacy; social and cultural norms and goals; long-term life values and goals; and spiritual/existential beliefs. Knowledge, beliefs, and values in the Core Orientation System can and do change or evolve over time, through different experiences and learning, but it is generally stable from moment to moment. In contrast, an individual’s short-term characteristics reflect attributes and goals of the moment, such as being tired from not sleeping last night, stressed because there is traffic, and having a goal of getting to the doctor’s appointment early enough to stop at the restroom first. Inputs, such as new information, new experiences, and emotions are evaluated and interpreted based on the information residing in the Core Orientation System, but inputs can be modulated further by short-term characteristics and by the surrounding greater environment.

II.B. Primary Appraisal – What is it?

As the event is occurring, the individual begins the process of the ‘Primary Appraisal’ of the event.(14–16, 54) In Figure 1, the Primary Appraisal is illustrated by the blue ring. The focus of the individual in this first appraisal step is a general determination of “What is it?” In this case, “it” is the news about the advanced cancer diagnosis. The categories of this general determination are listed in the blue ring as, Benign, Good, Challenge, Threat, or Loss. The last three categories all indicate that the individual has interpreted the event as potentially stressful. However, the event could be appraised into one or more of these categories, depending on their person-level factors (orange text box) and emotions (orange rectangle). The emotions the individual experiences are caused both by the experience of the event itself and by beginning this first appraisal step. For example, the individual in our scenario might appraise the news as Good because the diagnosis provides a desired explanation for recent symptoms and as a Challenge due to a desire to fight the cancer. However, there could also be an appraisal of Threat due to threats to the individual’s self-integrity, threatened loss of function, and threat of earlier death. There may also be an appraisal of Loss because the future the individual had been planning is now lost or altered due to the cancer. Thus, there can be one or more appraisals of a single event.

Because emotions subsequently have their own additional impact on the appraisal process, they are represented by the orange rectangle in Figure 1. Each of the different primary appraisal categories can be associated with one or more emotions. For example, a Good appraisal may have a positive emotion such as relief, while negative appraisals such as a Threat or Loss often have negative emotions, such as sadness, fear, or anger. The bidirectional blue and orange arrows indicate that emotions can both arise as a part of the appraisal process and can directly affect the appraisal process.(55) If strong emotions arise, the individual may need to use emotional regulation to effectively cope with the strong emotion and with the event itself. Individuals in highly emotional states may have difficulty accessing the full depth of their knowledge and cognitive function.(54, 56–58) Restated, individuals under stress can become more narrow and rigid in their thinking, focusing primarily on the most directly threatening aspects of the event.(58) This narrowing of focus and attention, while being evolutionarily useful to escape danger,(14) can make it difficult for the individual to absorb all of the information being delivered by the clinical provider in our example.(58) Thus, clinicians may find that they need to have multiple conversations over time to ensure patient comprehension.(57) Alternatively, to assist an individual in a highly emotional state in a medical setting, providers can provide empathic responses, such as facilitating emotion naming (verbal symbolization)(59) or making reflective statements to check understanding about what the individual has shared.(60, 61)

II.C. Overview of the remaining appraisal steps

Following the Primary Appraisal, three additional appraisal steps are outlined using enlarging concentric circles in Figure 2: the ‘Meaning Appraisal,’ the ‘Action Appraisal,’ and the ‘Outcome Appraisal.’ These subsequent steps may occur sequentially, simultaneously, repetitively, or may skip around, as indicated by the circular yellow arrow. For ease of illustration and description they are illustrated as occurring sequentially. These appraisal steps ask the following general questions, “What does the event mean? What do I do about it? How did my action (the action taken) work?” In the original transactional theory of stress and coping, there were only two appraisals, Primary and Secondary.(14) The Primary Appraisal – “What is it?” as described above – is the same as in the original theory. The Action Appraisal – “What do I do about it?” – is the same as the original ‘Secondary Appraisal;’ it has simply been renamed. Appraisals of meaning and outcome were subsequently discussed by the original authors,(15, 16, 62) but the Meaning Appraisal and Outcome Appraisal steps, as described here, are our adaptation of the current literature, as work in this area continues to evolve.

Figure 2. Overview of the four-step appraisal process of an event or stressor in serious medical illness.

COS – Core Orientation System

II.D. Action Appraisal – What do I do about it? and Outcome Appraisal – Did that work?

The Meaning Appraisal is listed as occurring next in the sequence, followed by the Action Appraisal, because often an individual’s interpretation of the event’s meaning directly informs the subsequent action taken in response to the event. However, the Meaning Appraisal step often requires time and deliberate thought,(63) which may not be possible or appropriate in certain circumstances.

For example, during an acute pain event, an Action Appraisal and the subsequent action taken might occur rapidly, without taking time to contemplate what the pain might mean or to deliberate options for action. Minimal time may be spent between the pain sensation and the initial action. Pain is felt, followed by the actions of saying “ouch” and moving one’s finger away from the hot oven or stopping walking because one’s leg hurts. The actions taken occur nearly automatically. After the first action is taken, the results of that action are evaluated with an Outcome Appraisal – Did that work? (outermost ring)

If the immediate action does not address the issue, the individual will then use the knowledge in his or her memory and Core Orientation System to determine what might be causing this pain. The individual will also evaluate if they have the means or resources to either control the pain or to manage it until it goes away (see Figure 2, purple text boxes). This step is illustrated in Figure 2 as the Resource Check. Then, depending on the nature of the event, there may also be an evaluation of goals, Goal Check, and Potential Outcomes, as well as the different Options for action that the individual has to try to reach those goals or outcomes. Recall that core goals, beliefs and values reside in one’s Core Orientation System. Goals may be short-term, specific to the current issue, such a goal of being able to manage the pain enough to get some chores done. Goals can also be related to more long-term, higher level values in the Core Orientation System, such as, “It is important to have a clean and tidy home.” With regard to Outcomes, the individual may consider one or more Potential Outcomes, such as the pain will go away on its own, the pain could be relieved with medication, or the pain will last for hours no matter what is tried to treat it. The individual is likely Hoping for one or more of these Potential Outcomes. Information about one’s Hopes and Expectations also reside in the Core Orientation System. The individual might Hope that the pain would resolve on its own or be able to be treated with acetaminophen. However, based on prior experience and knowledge in the Core Orientation System, the individual may Expect that the pain will probably require something stronger than the acetaminophen. The choice made and action taken as a part of the Action Appraisal can be a physical or behavioral action taken, an intentional choice not to act, or a change in one’s attitudes, beliefs, or goals. For example, in our pain scenario, rather than taking a medication or performing an action to relieve the pain, the individual might alter their attitude towards pain, enabling them to tolerate higher pain levels before considering treatment.

Perceptions of one’s ability to control the specific situation, also called Perceived Control, can also inform the Action Appraisal process. For example, if a certain action has always worked (as learned from prior Outcome Appraisals – outermost ring), one would be fairly confident that the same action will continue to work. Alternatively, the individual may have tried multiple options to control the pain in the past and subsequently determined from prior Outcome Appraisals, that those attempts were not very useful. Thus, an Outcome Appraisal can contribute to Learned knowledge and can inform Adaptations made to values, beliefs, and understanding about how the world works in the Core Orientation System. Within the Action Appraisal step, a perceived lack of controllability, lack of internal or external resources to cope, or mismatches between goals, outcomes, and hopes or expectations can all lead to distress.

II.E. Meaning Appraisal – What does it mean?

Distress at any point during the appraisal process may lead to a ‘Meaning Appraisal,’ a step that is intentionally a more deliberate process.(63) Depending on the event, Meaning Appraisals may occur repeatedly as the individual works to integrate the event, symptom, or issue into his or her life. This step generally asks the question, “What does this mean? What does it mean to me, to my life, for my hopes and goals, for my future, for my relationships?” The current research on meaning in life describes three separate, but related dimensions: Harmony, Purpose, and Value.(17, 18, 64)

Meaning in Life - Harmony

The Harmony dimension of meaning in life has also been called coherence, comprehension, sense-making, or understanding.(17, 18, 64) Individuals generally want their lives and life experiences make to sense; they want the different parts of their lives to be clear, comprehensible and to all ‘fit together’ well.(64) Trying to harmonize or integrate the aspects of a new life event into what one already knows and understands about the world and how it works (or how one believes it is supposed to work) is often the first and most important part of the Meaning Appraisal. To illustrate using our initial example of someone receiving news about advanced cancer, in the Harmony step of the Meaning Appraisal, the individual is assessing if and how the event and the news about the advanced cancer can somehow ‘fit’ into their existing life story and into the knowledge, values, and beliefs held in their Core Orientation System. As McAdams writes, “We are all tellers of tales. We each seek to provide our scattered and often confusing experiences with a sense of coherence by arranging the episodes of our lives into stories.”(65) Putting one’s life into context is an aspect of both meaning-centered therapy(66–69) and dignity therapy,(70–72) which have both shown efficacy in palliative care settings. Thus, harmonization may facilitate a sense self-continuity, rather than a sense of rupture from one’s self or life prior to the event.

The process of how this harmonization or sense-making happens is very individual and beyond the scope of this article, but there are three main options: to assimilate the event into one’s current belief structure, which resides in the Core Orientation System; to accommodate and alter the values and goals in the Core Orientation System to include this event; or to do neither, while trying to address any issues or sensations that arise from this lack of harmony (also called dissonance) in other ways. (43, 47, 73–77) For readers desiring more information about this process we refer to the Meaning Maintenance Model research, (43, 47, 76, 77) described in more detail in Appendix A.

If sense cannot be made and the event cannot be harmonized or integrated, life may feel uncertain or incomprehensible, leading to questions in other areas of meaning. “What is the purpose of this? Why did this happen? What is my purpose now (if I can no longer reach my goals or complete my plans)? Am I hopelessly lost? Do I still have value or worth? Does my life even matter?”

Meaning in Life - Purpose

Purpose in life has been defined as “the extent to which individuals experience their lives as being directed and motivated by valued life goals.”(17) Returning to our example of an individual receiving an advanced cancer diagnosis, being able to make sense out of the event, to harmonize or integrate it into the Core Orientation System, may subsequently make it easier for that individual to then find or adjust purposes or goals to match the new harmonized ‘life story,’ one that incorporates the advanced cancer diagnosis news. Alternatively, an individual may use a Purpose created by the new event, to then create Harmony and a coherent life story. For example, “I got this cancer so that I can show my sister how to beat it. We can both be strong together.”

While related to goals, having a sense of Purpose is higher-level than a typical goal, and does not require that a specific outcome be achieved.(17, 78, 79) Rather, a Purpose sits at the top of a hierarchy of values, ideals, and goals in one’s Core Orientation System, motivating goal oriented behavior.(17, 78, 79) For example, the ideal to “be a strong and independent person” could inform a lower-level goal of “I keep my own house clean; I don’t need a housekeeper,” to a specific goal of “vacuuming the floor every week.” Meanwhile, a Purpose tends to be more future-oriented, with an impact potentially across one’s life and even beyond.(79, 80) An example of a Purpose that might inform the goal hierarchy described above could be “to always provide for myself and for my family.” The Purpose of being a family provider thus informs the goal of being “strong and independent” and so forth.

Having goals and being able to partake in actions aligned with a sense of Purpose can provide a stronger sense of meaning.(19, 62) When existing goals are completed or blocked, the ability to switch to new goals has been linked to improved well-being(81–84) and improved quality of life.(85) It has also been suggested that individuals with more clearly defined purposes and higher-level values and goals are better able to make such goal adjustments.(78, 86) Similar to this idea of goal adjustment, Frankl(78, 80, 86–88) and others(19, 62, 89–91) have discussed meaning-making through Purpose, whether this be achieved through actions, creations, or attitudes. Under our example Purpose of being a family provider, the goals of “being independent” and “keeping the house clean” may be blocked by serious medical illness, but could be replaced by other goals, while still remaining true to the Purpose of providing for one’s family. In summary, Purpose is a central aspect of an individual and their personality, and it conveys important information about the hierarchies of goals and values within one’s Core Orientation System.(78, 79)

Meaning in Life – Value

The third dimension of meaning in life describes Value, some measure of worth, significance or importance that an individual has the sense that their life matters.(17, 18, 92) The contribution of one’s Value to the concept of meaning has not been as well researched as the prior two dimensions.(92) However, the concept of Value with relation to one’s life and one’s actions has been a topic for both existential philosophers(93–98) and therapists.(99, 100) Even though Frankl focused more on purpose, he spoke of the “unconditional value of each and every person.”(80) A sense of having ‘a life worth living’ has been described in multiple settings by multiple people and in different cultures, such as the concepts of eudaimonia in ancient Greece, or ikigai in Japan.(18) However, how one’s Value or worth is determined varies, making measurement of this dimension of meaning in life more challenging. For example, it may matter from whose perspective Value is being measured, that of the self, the universe, God, one’s family and friends, or all of the above. The answer may depend on the individual, and what perspective is most important according to their own Core Orientation System. The need to feel that our lives have Value beyond our own limited existence in order to cope with the inevitability of death is a concept that has been widely studied,(93, 101, 102) and is described in further detail in Appendix A.

As individuals with serious medical illness are often in a position of coming to terms with or Harmonizing the reality of their illness and their own mortality, questions about one’s Value, Purpose, and greater meaning can be a source of distress. However, there appear to be multiple Options for individuals to overcome meaning-related distress, based upon their own beliefs, values and goals in their Core Orientation Systems. In this way Meaning Appraisals can inform subsequent Action and Outcome Appraisals.

III. Adaptation in serious medical illness – the model continued

Having access to the appropriate tools and resources to be able to learn and adapt to new circumstances is an important part of human survival.(32) As outlined in Maslow’s hierarchy of needs(41, 42) and in research on resilience,(29) basic environmental needs, such as shelter and safety, often need to be addressed before higher level needs, such as self-esteem or self-actualization can be adequately addressed. Similarly, learning theory(103–107) demonstrates that we are best able to learn, process, and integrate new information, when we are comfortable, relaxed, open and receptive, engaged, motivated, and not overly distracted by other issues. However, very rarely, if ever, are we in perfect conditions for learning or adaptation. Serious medical illness also presents multiple barriers for optimal learning and adaptation.

Multiple needs assessments exist for those with serious medical illness, evaluating needs in physical, psychological, social, spiritual, and environmental domains.(108–114) Needs can be categorized in other ways, such as those for self-preservation or for growth, or considering private, internal needs and social, external needs.(115) While assessing for needs is an important first step, it has also been suggested that in order to maximize a patient’s potential for adaptation in serious medical illness, there also should be a synergy between the patient’s goals and desires and the available resources.(30) Broadening to a socioecological approach(116, 117) we must also consider the demands of the greater environment, or ecosystem, in which the patient functions, and the influences (both positive and negative) of the multiple layers of social contexts that are interconnected with the patient.(30, 116, 118) These social layers, such as others living in the household, extended family and or friends, the local community, culture and society have the power to both provide positive social support(119) or cause additional burden and stress.(120, 121) For example, while a spouse may be supportive, the spouse has separate needs for support, which the patient may or may not be able to provide.(24) Alternatively, an individual may have supportive needs that their social contexts cannot provide, leading them to seek professional assistance.(24) Thus, as depicted in Figure 3, it is not only an individual’s needs, but the give and take of needs and demands of that individual with those of the external environment and social contexts.(30, 116, 118)

Figure 3.

Interaction of the needs of the individual with serious medical illness and the demands of the external environment and the individual’s various social networks.

III.A. Resilience and adaptation in serious medical illness

Definitions of resilience vary, as it is a complex construct, but it generally involves “healthy, adaptive, or integrated positive functioning over the passage of time in the aftermath of adversity.”(28) A thorough review of the resiliency, recovery, and adaptation literature is beyond the scope of this article. However, research in this area generally suggests that when dealing with life stressors, having access to basic resources, to social and informational support, using more active coping strategies and less avoidant coping strategies, having a sense of coping self-efficacy, and lacking other recent life stressors have all been associated with improved individual outcomes and quality of life. (12, 29, 118, 122–138) Importantly, as described in the resiliency literature(28, 29, 33) and in narrative experiences of those with serious medical illness(139–145) there appears to be no one ‘right way’ or ‘best path’ to navigate life challenges or the end of one’s own life. As we discussed earlier in the Action Appraisal, the choices in how one copes with a stressor event varies with the individual and the context. The resilience field is moving away from identifying certain types of coping or emotion regulation as being bad or good, more adaptive or less adaptive. Instead, newer work focuses on the ability to access a variety of coping strategies and the ability to change and adapt them when they are not working as intended, a concept of flexibility.(33, 34) The way in which an individual meets their own needs depends on their resources and the surrounding socio-cultural context.(146) As a reminder, the purple boxes in Figure 2 outline various internal and external resource concepts, with external resources sub-categorized into environmental and social resources.

If resource utilization is flexible,(146) then a reliable method to identify individuals struggling to adapt to serious medical illness could be by identifying those lacking basic needs. Basic needs could include food or shelter, from the bottom of Maslow’s hierarchy. However, in serious medical illness,(139–145) it might be erroneous to assume that every patient with serious medical illness has the same hierarchy of goals or the same basic needs. A basic goal or need for one individual might not be so for someone else.(147) For example, some patients might prioritize pain control before a need for food, while others might first prioritize having assistance in the home. As discussed earlier, an individual’s hierarchy of goals or needs is informed by the specific values, goals, and priorities in his or her Core Orientation System. Existing life narratives of those with serious medical illness support this assertion.(139–145)

III.B. Levels of Adaptative Functioning in serious medical illness

Despite variability in the definitions and descriptions of physical and psychological adaption or resiliency in serious medical illness, some common themes appear. Thus, to complete our proposed framework for appraisal and adaption in serious medical illness, we have also included a visualization (Figure 4) and a general description (Table 1) of our proposed levels of adaptative functioning in serious medical illness, based upon the literature in learning under stressful situations, resiliency, post-traumatic growth, and traumatic stress and recovery (for detailed references see Appendix A). The primary purpose of Figure 4 and Table 1 is to help our community begin to conceptualize how patients with different levels of needs, greater environmental demands, and different levels of adaptive functioning may present in a clinical setting.

Figure 4. Overview of the adaptive functional levels and temporary states of functioning in individuals with serious medical illness.

Four separate adaptive levels (colored horizontal bars) provided for sake of illustration only. Adaptive functioning is more continuous, without clear demarcations between ‘levels’ and may vary by functional domain (e.g. mental, physical, spiritual, etc.).

Table 1.

Descriptive categorization of different adaptive functional levels and temporary states^a of functioning in individuals with serious medical illness.

Level or Statea	Needs & Demands	Focus	Goal	Control	Orientation	Stress	Threat of	Coping	Learning & Adaptation
Growth Statea	N/A	Remain present in experience, store memories and lessons	Retain experience and knowledge as future resource	N/A	N/A	Varies	Sense and feelings of transcendence, or growth may not be maintained	May be improved in domain of growth	Perceiving a significant shift in knowledge, attitudes, and/or a sense of achievement
Ideal Level (rare)	All needs met, demands addressed	Maintain level	Maintain level, enjoy life	Everything handled, managed	Present and future	Ideal amount	Loss of ideal level	Ideal	Ideal
Good Enough Level (Better than OK to Great)	- Many needs met, including basic needs. - Demands mostly manageable	Learning, growth, achievement, balance	Maintain level, achieve, enjoy life	- Feels that many aspects of life are manageable	Present and future (short and long-term)	Mostly manageable (may or may not be low)	- Not achieving or growing enough - Slipping back - Minor losses (if something bad happens it might suck for a bit, but I’ll deal)	- Range of coping skills and resources available - Easier to learn new coping skills	- Fairly easy due to low or manageable stress levels - May still be challenging if major task or change - Focus on self-improvement, long-term goals
Middle Level – (Just OK)	- Some needs met - Basic needs may not all be met - Some demands managed	Recovery, improvement	Get better, improve functioning	- Feels that has some ability to manage life - Minor stress may overwhelm - Major stress may be catastrophe	- Mostly present, and short-term future - Considering long-term future may be more challenging	- Partly to mostly manageable - Levels moderate to high	- Not achieving or growing enough - Slipping back - Major losses (if something bad happens, I don’t know if I can handle it)	Beyond basic coping skills, but mostly reliant on existing skills and resources	- Can be challenging due to stress levels and unmet needs - Learning new coping skills is possible, but may not be easy - Focus on preventing disaster, improve stability and functioning, moving towards goals
Middle Level – (Hanging in there)		Maintain, get by	Keep steady, avoid slipping backwards
Survival Level	- Few needs met - Basic needs not met - Demands may be high, challenging to manage	Survival, safety	Survival, safety, get basic needs met	Life feels mostly out of control, unpredictable	- Mostly immediate, present, here and now - One step at a time - Future harder to consider	- Barely manageable or not manageable - High levels	Ultimate loss, losing everything (if something bad happens I’m doomed)	- Coping may be more basic or by any means necessary (personal values/ideals may be overridden by need to survive)	- Can be challenging due to stress levels and unmet needs - Learning new coping skills is challenging - Focus on survival and meeting basic needs - However, opportunity to refocus on basics
Crisis or Collapse Statea	Needs total or considerable help in one or more domains	Loss of focus, especially in domain of collapse	Address issues causing collapse	N/A	N/A	- High levels and/or unaware	Continued collapse	None in domain of collapse	Unable to do in domain of collapse until conditions addressed

^aStates are often temporary, do not necessarily have the full aspects of a functional level, and can co-occur while an individual is otherwise functioning at another adaptive functional level. For example, individuals may experience significant (post-traumatic) growth or transcendence related to fear of death while still struggling with physical symptoms. Alternatively, individuals may experience physical collapse while being emotionally functional or vice versa.

Descriptions of discrete functional levels and states are not absolute and are primarily intended to assist readers with categorization and understanding. Actual functional levels and states are on a continuum. An individual has multiple domains of function, physical, emotional, etc.

For conceptual purposes, and ease of illustration only, in Figure 4 and Table 1, adaptive functioning in serious medical illness is stratified into 3 main levels, Good Enough, Middle, and Survival. The Ideal Level exists, but in serious medical illness appears more aspirational(148) and challenging to reach or maintain, based on our collective clinical experiences. Instead, the highest adaptive functioning level in serious medical illness is typically the Good Enough Level, based on the concept of having a “good enough life.”(28, 121, 149) Moving from left to right in Figure 4, the blue line is an example trajectory of the adaptive functioning over time of our hypothetical patient receiving the advanced cancer diagnosis news. Not every individual will follow this particular trajectory; they may progress up or down in their adaptive abilities depending on daily events, the availability of internal and external resources, and any external environmental or societal demands.(150, 151) Also, note that while we have created discrete levels for illustrative and descriptive purposes, there are no clear boundaries.

Adaptative functioning is on a continuum and may vary by functional domain.(150) Functional domains may vary by individual, but generally consist of at least a physical functional domain and a psychological functional domain. Alternatively, functional domains may differ by setting; an individual may no longer be able to function at work but can function at home. Individuals are constantly adapting to changes in the greater environment and to changes within themselves,(150) adjusting to the demands from the greater environment and internal demands from their own needs and goals.(151) In order to reach a Good Enough level of adaptive functioning, one must be able to have adequate internal and external resources, be able to access those resources, and be able to effectively use those resources to meet internal and external demands.(32, 152–154)

The large orange arrows in Figure 4 indicate some general trends across the levels of adaptive functioning. Generally, with greater amounts of stress, more unmet needs, and higher environmental or societal demands there is greater likelihood for a lower level of adaptive functioning.(118, 150, 151) Conversely, there is a greater likelihood of increased adaptive functioning in individuals with more resources, including a greater sense of empowerment(149) and self-efficacy.(155) Table 1 provides more detail about each level of adaptive functioning. The sample descriptions in Table 1 are not intended to be absolute, but to facilitate our ability to understand and identify differences in adaptive functional levels, so that we can better ‘meet patients where they are at’ in terms of adaptive functioning and priorities.

III.C. States of Functioning

At the bottom and the top of Table 1, (illustrated as ovals in Figure 4) we have separated out a state of Crisis, or Collapse, and a state of Growth, or transcendence. These are called states rather than levels, as they are temporary and can occur while an individual is otherwise functioning at another adaptive functional level. Thus, in Figure 4, these states are ovals, and they are associated with dashed black lines, separate from the main blue line trajectory.

Crisis or Collapse State

To explain further, consider our hypothetical individual. At Event A, the individual has received news about her advanced cancer diagnosis. Adaptive functioning begins to decline as she works to psychologically adapt to this information and physically adapt to the effects of her cancer treatment. At Event B, her adaptive level drops and there is also a dashed black line down to the crisis or collapse state. At this time, the patient had a grand mal seizure due to brain metastases and was admitted to the hospital. Thus, there was a physical collapse, where the body was temporarily not able to physically adapt. Crisis or collapse represents the extreme edge, in which effects from the inciting event are so overwhelming that individual often becomes dependent on others to meet basic needs for survival in one or more functional domains. (Note that lack of functioning due to overwhelming distress can appear similar but is distinctly separate from decreased mental or physical functioning due to illness or the dying process itself.)

Growth State

Later in the trajectory, Event C occurs. The patient is again admitted to the hospital, this time with pain, nausea, and vomiting. Her adaptive functioning level goes down due to her worsening symptoms. However, the drop in this case is more temporary. While in the hospital, the patient experiences a transformational event. The majority of adaptive functioning continues to follow the primary blue line, but the patient’s sense of growth and meaning from the transformational event provides a concurrent experience of being at a higher level, in the state of growth. In a growth state, individuals may describe ‘discovering what really matters in life’ or finding new meaning or purpose in their lives. During the hospital stay of Event C the patient has a long conversation with her children. She expressed her determination to ‘fight hard’ for them. She wanted to keep living so that she could be present for graduations, weddings, and births. Being present for these events was an important aspect of her vision of ‘providing’ for her family. However, because the cancer kept progressing, she felt as though she was letting her family down. Her transformational event occurred when her children told her that they did not want to see her ‘fighting so hard’ that she was always sick. Instead, her children wanted her to focus on spending quality time with them, to make memories while they still could.

Her children’s expression of their need and their acknowledgement that they knew her time was short, acted to transform how she was considering her purpose of being a provider and her goal of being strong. By accepting her limits, readjusting her demands on herself, and altering her goal ‘to provide for her family’ by providing quality time with them, she experienced a temporary state of growth. This elevated sense of being at a higher level begins to wane over time in Figure 4 but does not disappear completely.

Using our Integrated Appraisal Framework, it is thought that the growth state most often occurs through a Meaning Appraisal step, in which the challenge of the triggering event causes a transformative harmonization of the individual’s Core Orientation System to accommodate or assimilate the event, or the event causes a transformative change in purpose and/or value. This growth state has also been referred to as transcendence, benefit-finding, or post-traumatic growth.(156–159) The individual experiences and effects of a growth state likely varies, but a growth state is not necessary to experience adaptation or resilience in the setting of serious medical illness.(160)

III.D. Key Points to Levels of Adaptive Functioning

Table 1 further describes the different levels of adaptive functioning in a patient with serious medical illness, with the primary goal of facilitating the identification of individuals in and around the survival level, as they may have more difficulty considering ‘the bigger picture’ of their condition. A key feature of the survival level is the immediate and short-term goal frame of reference. An individual at the survival level still can learn, adapt, and think about the future, but it can be more challenging to do so.(103–107, 161, 162) There is nothing inherently bad or wrong with functioning at a survival level, but it likely signifies either a high level of stress, multiple important unmet needs, and/or considerable burden from environmental and social demands.(31, 32, 154) Helping an individual at the survival level to take some active steps to address the burdens of stress, needs and demands may begin to address feelings of helplessness or powerlessness, empowering that individual to feel as though they do have the ability to act and imparting a feeling of hope(163) or an improved sense of control.(164)

Also note that in Table 1, ‘Control’ increases as adaptive functioning level increases. As patients with serious medical illness may not be able to individually control certain aspects of their lives due to the nature of the illness, the sense of control concept (or perceived control(165–169)), we refer to in the ‘Control’ column of Table 1 is in essence an amalgamation of both internal resources, such as empowerment or self-efficacy, and external resources, such as perceived social support. In other words, we are describing the sense that the individual feels or perceives that they, or the people helping them, together can adequately manage new challenges.

IV. The palliative care impact

With a better understanding of the patient experience and process of dealing with serious medical illness, it becomes easier to see how and where palliative care providers facilitate this process. Palliative care facilitates the appraisal process because often the first question asked by a palliative care provider directs the individual back to the Primary Appraisal, “What do you understand about your illness?” Appraisal and informational support are identified areas of social support resources (see purple boxes in Figure 2). While patients may be supported by loved ones in the information gathering and appraisal process, palliative care clinicians provide expert medical knowledge (information and clarification) tailored specifically to the patient’s situation and informational needs, including facilitating disease understanding and prognostic awareness. Additionally, palliative care providers can discuss potential outcomes and options for management while both exploring and validating the patient’s hopes for the future and tempering expectations for what is medically most likely. Palliative care providers also commonly integrate needs assessments and facilitate instrumental support by connecting patients and their loved one to additional resources when necessary.

While palliative care providers are not the only clinicians conducting needs assessments or providing instrumental support in serious medical illness, clinicians providing palliative or hospice care are the providers most frequently asking patients “What does this (the illness/symptom/situation) mean to you?” or asking about their life goals and what is most meaningful to them. These questions specifically direct the patient back to his or her Core Orientation System and are asking the patient to make a conscious Meaning Appraisal. In serious medical illness, there are often so many other issues occurring in a patient’s life, that a Meaning Appraisal may not have occurred or may not have been sufficiently considered prior to a palliative care visit.

In serious medical illness, individuals often need time to integrate or harmonize the illness into their life stories. They need time to consider the impact of the illness on the values, beliefs and goals in their Core Orientation Systems. Individuals with sufficient internal and/or external resources, such as a strong sense of coherence, resilience, flexibility, or social support may not require Meaning Appraisal assistance, but many patients do. When palliative care providers specifically ask a patient to conduct a Meaning Appraisal, that patient may subsequently find that actions that were taken or choices that were made are no longer consistent with the goals and values in their Core Orientation System. For example, choices made on an old advanced directive may no longer be consistent with current values, or continuing disease-directed therapy to ‘stay alive’ may not be consistent with an identified personal value to spend quality time with family.

Palliative care providers also assist with meaning-making by encouraging patients and families to tell ‘their story’ from their own perspectives. In so doing, this storytelling can help facilitate a patient’s sense-making and harmonization, through the co-development of an illness narrative using shared understanding and language between the provider and the patient. This co-creation of an illness narrative validates the patient’s experience of illness. The process of sharing their story also provides a sense of human connection and value, that their stories and experiences have worth. For example, in a study of patients with advanced cancer, patients reported an increased sense of feeling ‘heard and understood’ after a palliative care consultation.(170)

Then, after a Meaning Appraisal has occurred, and a patient has taken the time to evaluate or re-evaluate what personal goals and values in the Core Orientation System are most important, a subsequent Action Appraisal can then be better informed by the new patient-centered, goal-relevant information. Serious medical illness can interfere with life goals. For example, a patient wants to go fishing but is too sick to be able to do so. An informed discussion about values and goals leads to the discovery that what the patient most enjoys is the peace and solitude of being on the water. Together, the patient and provider develop an alternative goal - to drive to the lake and enjoy the view. Thus, in the Action Appraisal, once goals and meanings have been clarified, palliative care can assist an individual in selecting smaller, more achievable or alternative goals that are still aligned with their Core Orientation System.

Palliative care also helps people to adapt to serious medical illness by suggesting various coping strategies, such as discussing strategies to treat or improve symptoms, which is a direct problem-solving coping strategy. Alternatively, providers can suggest a patient-centered idea to positively reframe an event,(12, 138, 171) helping patients to find their own ‘silver lining’ based on their Core Orientation System goals, values, and beliefs. Together, it appears that there are multiple opportunities for palliative care to facilitate the process of Appraisal and Adaptation in serious medical illness. These are opportunities that palliative care providers have been using intuitively or from collective experience, despite the lack of a unifying theory to describe why or how the ‘palliative care approach’ works.(172)

V. Conclusion

Recent randomized clinical work has demonstrated that in patients with advanced cancer receiving palliative care, those who used approach-based coping styles had a better quality of life,(137) which is consistent with findings in the coping literature.(90, 91, 173–177) Palliative care was also associated with a patient transition to more active, approach-based coping styles,(12) illustrating the potential for palliative care to facilitate patient adaptation and coping flexibility. While palliative care providers facilitate the process of Appraisal and Adaptation in Serious Medical Illness intuitively or from collective experience, the ideas presented in this article are intended to provide a unifying theory to begin to describe why or how the ‘palliative care approach’ works.

Outside of research in palliative care and serious medical illness, the fields of social and behavioral science provide extensive theory and research that could potentially inform and improve our abilities as palliative care providers in caring for our patients. Our proposed Integrated Framework for Appraisal and Adaptation in Serious Medical Illness is a synthesis of existing literature in the social and behavioral sciences, a translation of that knowledge into a clinically useful framework for all palliative care team members. Based on current research, we hypothesize that palliative care acts in several places across this proposed framework: via a combination of assessing and addressing needs; providing information and enhancing prognostic awareness; supporting the appraisal process by asking about meaning, values, and goals; providing effective symptom management; facilitating coping flexibility; empowering patients by suggesting active coping strategies; and providing a safe, compassionate place for patients and families to process their illness narratives and experiences.

The framework presented here offers an approach to explain how palliative care facilitates adaptation to serious medical illness, allowing patients and their loved ones to ‘live well’ regardless of medical illness. This orientation is important, as it bolsters the case for palliative care’s upstream benefits, through facilitating complex event processing, decision-making, meaning-making, coping and adaptation. This framework is cross-cutting, applicable to patients and their loved ones as well as to caregivers; it also is suitable across medical illness, diagnosis, or age group. It accounts for the variation and impact of culture, ethnicity, race, and spiritual beliefs, as all of these can be considered as a part of one’s Core Orientation System, internal or external resources, and/or as a part of an individual’s social context. The authors hope for future collaboration with experts and researchers from all related fields, to further refine and test this framework, which could lead to more effective measurement and interventions in both serious medical illness and in palliative care practice.

Key Message:

This framework characterizes how patients with serious medical illness and their loved ones cognitively and emotionally process their illness experiences. Introducing hospice and palliative care providers to this framework and its underlying established theories, will improve clinical understanding of the patient experience and will catalyze further research in our field.

Appendix A – Annotated List of References by category/topic (key areas bolded and italicized)

The list below is by no means a comprehensive summary of all research potentially relevant to the proposed framework. However, please see below for additional details regarding the various relevant works and theories incorporated and considered in the development of this framework.

General notes to readers familiar with the social and behavioral literature:

This article is intended to be a broad overview of a wide range of existing social and behavioral literature for hospice and palliative care interdisciplinary team members, and not a complete systematic review of all literature and theory that might relate to the concepts we introduce. We readily acknowledge that readers more familiar with the literature may desire a deeper discussion and considerably more detail. For example, we opted for the sake of simplicity to avoid detailing the layers of the social-ecological model,(117) including the microsystem, mesosystem, etc., but agree that resources and deficits in the ‘Greater Environment’ within our theoretical framework could clearly be organized using the layers of the social-ecological model.

Similarly, because our intended audience is generally less familiar with the social and behavioral literature, please note, that there may be terms or concepts frequently used in the social and behavioral literature that are not used in this article. We specifically chose to avoid using unfamiliar jargon or theoretical names, in order to better facilitate understanding from a clinical perspective. For example, the short-term and long-term personal characteristics could also be referred to as state versus trait characteristics.(178) You will also note that “thinking fast versus slow”(63) or System 1 versus System 2,(179) is implied in our discussion of scenarios where the slower, more deliberate Meaning Appraisal (a System 2 process), may be skipped over in a setting of acute pain.

Core Orientation System (COS)

We have chosen to use the term Core Orientation System to describe the discrete aspects that contribute to how an individual understands and makes sense out of the world, rather than a previously used term because the terms that others have used, such as personality, intelligence, expected relationships,(43) schema,(44–46) meaning frameworks,(17, 47) paradigms,(48) worldview,(49) or global meaning,(19) do not appear to accurately capture the wide range of personal aspects that an individual uses to interpret and understand new information, comparing it to existing information, knowledge, beliefs, values, meaning frameworks, and other core parts of the self that influence how this new information is interpreted. The term core schemas(19, 50) has been used, as has general orienting systems.(19, 51) The word “core” invokes a sense of being in the center of or central to something, and the term “orienting system” is consistent with cognitive neuroscience.(180) We chose the word “system”, rather than “network” to allow for multiple networks that serve to orient and re-orient an individual throughout their life, and in recognition of the application of complex adaptive system theory to the human brain.(181) Therefore, we felt that the term “core orientation system” would invoke an image of a group of objects, central to an individual, serving as a reference point and providing orientation to that individual as they travel through life. This term is also very similar to Mahoney’s core organizing principle. (52, 53) Mahoney describes our constant attempts to “organize the complex flow of life in process is the most fundamental principle of human experience.” We want to establish, regain, or improve order, pattern and organization in our lives. (52, 53)

The exact details of how the Core Orientation System functions, how to evaluate its function, or if it truly is even one system is beyond the scope of this article and is more the provenance of behavioral and cognitive neuroscience. We have created this term or concept of ‘one single system that encompasses everything’ to enable reader comprehension, especially those less familiar with the social and behavioral literature. We acknowledge this oversimplification and agree that there are a multitude of layers and feedback systems in a complex adaptive system like the human brain. For example, there is evidence to suggest both a ‘bottom-up’ and a ‘top-down’ orientation system,(180) as well as multiple theories of executive function, used to facilitate and support decision-making and goal-oriented processes.(180, 182–185) Rather than following strict rules, connectionist models, such as in artificial neural networks, are thought to better exhibit the flexibility and context sensitivity of humans.(186) Our “core orientation system” as conceptualized here would include both ‘bottom-up’ orientation to external sensory cues, along with the ‘top-down’ orientation to internal goals, values, attitudes and expectations. As an individual completes the appraisal steps in our proposed integrated framework, additional ‘top down’ orientation and executive function processes would then guide subsequent thought and action.

Resilience

• Resilience definition(26–28) “the multi-dimensional ability to adapt well after experiencing adversity, trauma, or other stressors.”

• Fostering resilience(187–189)

• Ego-resiliency(190)

• Resilience to loss and potential trauma(29)

• Resilience in mental health and neurobiological perspectives(191)

• Resilience in aging(192) – salutogenesis,(193) eudamonia(194)

• Culture and resilience(121)

• Lifecourse model of multimorbidity resilience(30)

• Conservation of resources theory(31, 32)

• Regulatory flexibility(33, 34)

Traumatic stress and recovery

• After traumatic injury(122)

• After traumatic brain injury(123, 124)

• After spinal cord injury(125, 126)

• Disaster(127–130)

• Responders to terrorist attack(131, 132)

• Burn injury(133)

• Cancer(12, 134–138)

• Recovery in mental illness (149, 195)

Preventing mental illness (coping)

Arguments and evidence for preventative strategies for mental health.(196) According to WHO “Preventative interventions are based on modifying risk exposure and strengthening the coping mechanisms of the individual.”(197)

Coping

• Transactional theory of stress and coping,(14, 16) emotions and adaptation(15)

• General review of coping research(198)

• Coping styles versus coping responses(199)

• Coping and emotional labor(162) – specifically outlines how proactive coping, including planning, goal setting, and resource utilization can help people to deal with cognitive dissonance (see cognitive dissonance theory(74) below). Mentioned specifically as these tasks are relevant to routine palliative care practice.

• Positive reappraisal – review(200)

• Positive psychological states and coping with severe stress(89)

• Perception of control and effective coping(201–203)

• Perceived effectiveness of coping strategies, sense of coherence and quality of life(204)

• Rebuilding assumptions in Shattered Assumptions pp 115-141(23)

Coping and age

• Older adults coping with negative life events(205–207)

• Older adults goal pursuit and flexibility(208, 209)

Coping and illness

• Stress, coping, and hope – managing uncertainty and coping with changing reality(90)

• Promoting psychological well-being in face of serious illness.(91)

• Domains of coping in advanced cancer patients – review(173)

• Stress and coping in the chronically ill – similar coping strategies used across illness types(174)

• Illness perceptions and coping(175)

• Adaptive coping in palliative care(176)

• Influence of coping style and health optimism to death reminders(177)

Post-traumatic growth – Calhoun and Tedeschi(156)

• Post-traumatic growth in Israel(157)

• Post traumatic growth in cancer(158)

• Post-traumatic growth versus improvement and impact of social support in shared traumatic experience(159)

Social support

• Social contexts(118, 120)

• Choice of social support matters(20)

• Dispositional, situational, and temporal parameters of social support(21)

• Links between social support and health(22, 119, 210)

• The external world – the crucial role of others in Shattered Assumptions pp142-165(23)

• Social networks and social support(24, 25)

• Measuring social support(211–213)

• Socioecological model(116)

• Social resource theory(214)

Needs

Needs in patients with serious medical illness(108–114)

Hierarchy of Needs – Maslow(41, 42)

Resource theory overviews(32, 215, 216)

Conservation of resources theory(31, 163, 217)

Human Scale Development(146)

Individual Empowerment(160, 218–224) (225) (226)

Self-efficacy (155, 227, 228)

Review of behavioral science theories for health promotion (229, 230)

Perceived control (165–169, 231, 232)

Hope (233–236)

Meaning

• Meaning in illness(237, 238)

• Three part meaning in life (17, 18, 64) Coherence/sense-making, purpose, significance/value

• Meaning maintenance, threat compensation (43, 47, 76, 77)

• Meaning in stressful life events(19, 62)

• Relational meaning – meaning of relationships with others(239)

• Meaning-Logotherapy – Frankl(80, 87, 88, 240) emphasis on purpose, ways of making meaning in challenging life circumstances.

Frankl and meaning through purpose: Separately, Frankl(78, 80, 86–88) and others(19, 62, 89-91) have discussed meaning-making through purpose, whether this be achieved through actions, creations, or attitudes. While it has been described that purpose and higher-level goals can inform lower-level and more discrete actions,(78) it is not clear if goals themselves can be created into a Purpose if one does not already exist. However, it has been suggested that an individual’s Purpose(s) is highly linked to his or her life narrative.(79) Thus, it may be meaningful enough to have goals in harmony with one’s sense of life narrative or story(65, 241, 242)

Meaning-Existential, existential therapy Yalom(99, 100) - meaninglessness is an existential given

• Existential mattering(92)

• Existential philosophy – Wolf,(93) Becker,(94) Sartre,(95) Kierkegaard,(96) Heidegger,(97) Camus(98)

• Meaning making, health and spirituality(243)

• Meaning, stress and health(244)

• Purpose in life(79)

• Life as goal-oriented behavior(78)

• Goal adjustment(81–85)

• Notes on ‘Value:’ What causes some confusion is that personal values and beliefs have an inherent ‘value’ or worth to the individual. However, in considering meaning in life, the Value most often considered is the Value of the individual as a whole and the Value of one’s life, rather than the values of one’s own beliefs. The Value of one’s life can clearly be linked to one’s Purpose, but these are considered to be two separate dimensions of meaning.(17, 78, 79)

Coherence – Antonovsky(245, 246) and “Sense of coherence.” Coherence includes meaningfulness (willing to accept life as a challenge, not a stressor) comprehensibility, manageability. Sense of coherence has been described as both a long-term held worldview – that the world generally makes sense, and thus this attitude is included in our concept of COS. However, Antonovksy also spoke about evaluating more immediate sense making, in line with the newer three-part model of meaning in life (see above.) Antonovsky also developed salutogenesis.(193)

• Sense of coherence scale(247, 248)

• Sense of coherence scale in comparison to other measures(249, 250)

• Sense of coherence associated with improved survival in elderly(251)

• Sense of coherence and improved quality of life in women with breast cancer(252, 253)

Cognitive schemas

Piaget(45, 46) – schema theory, assimilation, accommodation, equilibrium, disequilibrium – summarized in(73)

Core Organizing Principle – Mahoney(52, 53) Our constant attempts to “organize the complex flow of life in process is the most fundamental principle of human experience.” We want to establish, regain or improve order, pattern and organization in our lives.

Cognitive dissonance theory – “People are bothered by inconsistencies between their mental representations and will work to reduce those inconsistencies.”(47) Thus, they take action to address discrepancies between thoughts about beliefs, emotions, intentions, behaviors. They engage in dissonance reduction,(47, 74) to make things harmonious again.(47, 75)

Meaning Maintenance Model (MMM) (43, 47, 76, 77) (and counter arguments(254–256)) Cognitive dissonance, lack of order/sense, or any other violation of an individual’s meaning framework (value, belief, goals), causes aversive arousal, driving the attempts to address the dissonance or mismatch. The MMM argues that people attempt to address this arousal though accommodation. However, if that is not available, other attempts will be made to try to address this ‘violation’ of one’s own sense of meaning. Mechanisms used to address this violation typically include assimilation, accommodation, affirmation, abstraction, or assembly,(43) using ‘fluid compensation.’ The compensation is fluid because the action taken may not directly address the dissonance itself or its cause, potentially in a different, seemingly unrelated aspect of meaning. Frequently compensatory actions and behaviors are linked to one highest personal values, such as affirming identification with a specific social group, belief, religion, or culture.(47) In affirmation, abstraction, or assembly, individuals are looking for increasing the meaning in their lives elsewhere, either by affirming other strongly held values or beliefs (in the Core Orientation System) that are not threatened by the current scenario, or looking to the outside world in abstraction and assembly.(43) Abstraction is the act of finding and creating patterns in the greater environment, while assembly is the act of creating something to help us feel in control and to create a new way to make the environment feel safe and familiar.(43)

Uncertainty Management(86, 256, 257) Perspectives specific to the issues of uncertainty. Linked to the broader concepts of meaning in life in(17) and to Terror Management Theory (see below)

Dignity therapy(70–72) – a specific intervention to invite patients to share part of their life story and wisdom by “discussing issues that matter most or that they would most want remembered,”(72) with the intention of improving the patient’s dignity and self-worth.

Meaning-centered group psychotherapy(66–69) – a specific intervention developed for patients with advanced cancer to help improve spiritual well-being and sense of meaning.

Narrative Identity(65, 241, 242)

• Research methods(258)

• Narrative identity and well-being(259)

• Narrative identity and meaning making(260)

• Narrative identity and cultural psychology(261)

Serious Medical Illness Narratives(139–145)

Hero’s Journey – the monomyth(262–265)

Hero’s Journey and post-traumatic growth(266)

Mortality concerns

• Cognitive-Behavioral end-of-life strategies(267)

• Psychoanalytic: awareness of mortality, prognosis, prognostic awareness(268–271)

• Terror management theory(101, 102) (field of social psychology research) mortality salience, death awareness

• Terror management theory, coping, and health behavior(177)

• Existential therapy Yalom(99, 100)

Stress and Health(14, 15, 245, 246, 272)

Serious Illness Model(237, 273–276)

Learning, coping, and stress, fear(103)

• Coping and learning are reciprocal – ‘learning to cope’(104)

• How fear affects learning(105)

• How emotions affect learning(106, 107)

• Work and learning necessary to deal with cognitive/emotional dissonance, depletes internal resources, leads to burnout(161, 162)

Ecological aging model(150, 151)

The effects of stress on learning has been reported as both positive and negative.(55, 277) Acute stress can inhibit ability to act.(278) The stress faced by patients and caregivers needing to learn how to cope, face, and manage is likely similar to the stresses faced by adults seeking secondary education(35) Unmet needs contribute to stress levels in learning(35) and in medical illness.(36–38) Improving safety (which includes health care access) is related to improved learning in children(39) and function outcomes in adults with mental illness.(40) Progress can be made in spite of stress levels and unmet needs, but it is clearly more challenging.(40) However, it is also possible that when people cannot meet more basic goals, such as stable housing, they may be more likely to focus on more aspirational goals.(40, 50) Specific studies in those with serious medical illness are needed to be better able to discern the impact of addressing different needs, and the needs hierarchy and impacts of interventions may be specific to each patient/family unit.

Appendix B – Considerations for clinical application and research

There are many ways in which we feel that this framework can be directly applied to our care of individuals with serious medical illness and their loved ones. For example, at the start of the article we mention a ‘breaking bad news’ scenario. Most of us have received training in how to conduct such a conversation. However, we may not be as aware of the theory and research explaining why ‘the way we do it’ works. This framework could be used to facilitate teaching communication skills, to explain why it is so important to ‘set the stage’ and to ‘address emotion’ when it arises. If the stage is set ‘in a certain way’ it might bias the individual towards feeling less comfortable and feeling more threatened, potentially directing them towards a more threatening initial assessment of this ‘bad news.’ Emotion-based research and our framework help to explain why individuals can appear to stop listening or be unable to recall the conversation. Strong emotions affect an individual’s ability to move through and complete the outlined appraisal steps. Therefore, it is no surprise that people might act and decide differently when experiencing strong emotions in the moment, versus later once they have had a chance to ‘mull things over.’ It can be frustrating and invalidating for us as providers to ‘do all this work’ to have a conversation with patients, only to have them change their minds about their preferred approach to treatment. Our framework helps to explain the many steps involved in this process and what might be happening as patients continue to evolve their own appraisals of their situation. The many steps and iterations also help to explain why ‘the process’ of goals of care discussions and medical decision making is rarely a ‘one-and-done’ or quick process.

While there is no one specific way in which individuals conduct Action Appraisals, deciding how to act (or choosing not to act), how to modify their goals, values, or attitudes, we hope that by breaking down this appraisal step into a couple of key components, it can be easier for all members of the interdisciplinary team to understand what parts of the Action Appraisal might be playing a role in certain decisions. For example, if an individual appears to be understanding their poor prognosis and that their treatment options all have considerable side effects that they appear not to want, but still decides to continue with medical treatment, is there something within the domain of the Action Appraisal that is driving this decision? Are they aware of all their options, including that hospice is an option? Or is there a value, goal, hope, or an experience informing expectations that is overriding their stated desire to avoid treatment side effects? Is there an aspect of control informing this decision? In other words, does the patient feel that by not taking treatment, they would not be taking control of this challenging situation, leaving themselves and their family to uncertainty? These questions are not to suggest that we need to question or analyze every choice that our patients make. Rather, it is to help us think through these choices alongside of the patient and their family, and to assist if they are uncertain about next steps.

The dimensions of meaning – harmony, purpose, and value – can be useful in numerous ways. For example, if someone is having difficulty making choices or having trouble adjusting to the changes in their lives, exploring one or more of these three aspects of meaning might help. Patients that are feeling as though their lives are ‘out of control’ or ‘turned upside down’ might benefit from finding ways to create more meaning through harmony. They might benefit from an opportunity to make sense out of the world by telling their illness or life story. They might benefit from creating more structure in their lives or finding aspects of their lives that they can control. Similarly, others may be having challenges with their sense of purpose or their value as a result of their illness. Determining which aspects of meaning are being affected can help us to better make suggestions to the patient and their loved ones about interventions to try.

The model of functional adaptation can help to describe and facilitate our identification of patients or family members operating in ‘survival mode.’ Identifying these individuals, what their greatest needs are, and determining how to meet those needs may be helpful in allowing us to proactively assist those that are at ‘highest risk’ for facing ongoing life challenges.

These are only a few examples of how this framework could be clinically applied. Further research is needed to determine if the meaning appraisal fits into the other appraisal model steps as described, and how this framework might be different in those with cognitive impairment. Other research could determine how often hospice and palliative care team members are directly suggesting and encouraging specific steps (such as coping strategies) in the Action Appraisal, or if the changes in coping strategies attributed to palliative care interventions still occur if the palliative care team only provides validation and support. Further measurement of meaning in our patient population, using instruments such as the Multidimensional Existential Meaning Scale(64) could determine if these three aspects of meaning are applicable to our patient population, and could examine the impact of meaning on quality of life and adjustment to declining functional status. Other research could be directed toward determining if there is a way to clearly identify individuals operating in the ‘survival level’ of adaptive functioning, and if they indeed have more challenges in thinking about the future or completing advanced directives.

In summary, the proposed framework can be used to guide and improve clinical processes and to generate questions to be addressed by future research. The goal is to begin to conceptualize the processes at work in the appraisal and adaptation to serious medical illness in order to establish a foundation for future work in this important area.