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Psychosocial issues in advanced illness

Psychosocial issues in advanced illness
Author:
Fremonta L Meyer, MD
Section Editors:
Kenneth E Schmader, MD
Susan D Block, MD
Deputy Editor:
Jane Givens, MD
Literature review current through: Apr 2021. | This topic last updated: Mar 02, 2021.

INTRODUCTION — The clinician plays an important role in the care of patients in palliative care. In addition to addressing their medical needs, they help patients to identify sources of meaning and purpose as they approach the end of life. Clinicians can also help explore patients’ feelings, even difficult ones, including sadness about saying goodbye or worries about failing loved ones by feeling ready to die. Of note, the clinician does not need to do this alone and may call upon chaplains, mental health providers, and palliative care colleagues as needed.

This topic presents an overview of psychosocial issues for patients with an advanced illness who enter palliative care. In addition, this topic provides a series of questions to use with patients and caregivers that can guide the clinician in discussing sensitive issues. Specific issues related to psychosocial issues in palliative care are discussed in more detail separately.

(See "Communication of prognosis in palliative care".)

(See "Discussing serious news".)

(See "Overview of spirituality in palliative care".)

(See "Overview of anxiety in palliative care".)

(See "Assessment and management of depression in palliative care".)

(See "Approach to symptom assessment in palliative care".)

(See "Overview of managing common non-pain symptoms in palliative care".)

(See "Sexuality in palliative care".)

(See "Palliative care: The last hours and days of life".)

(See "Preparing children and adolescents for the loss of a loved one".)

THE CLINICIAN’S ROLE — The clinician plays an important role in the care of patients in palliative care. In addition to addressing their medical needs, they help patients to identify sources of meaning and purpose as they approach the end of life. Clinicians also provide support for their feelings, even difficult ones, including sadness about saying goodbye or worries about failing loved ones by feeling ready to die. Of note, the clinician does not need to do this alone and may call upon chaplains, mental health providers, and palliative care colleagues as needed.

The clinician can achieve these goals by:

Identifying the patient’s strengths and vulnerabilities

Exploring spiritual practices and beliefs (see "Overview of spirituality in palliative care")

Inquiring about other areas of possible distress (eg, finances, adjustment of family or loved ones, self-esteem)

The role of clinicians in relation to common issues experienced by patients in palliative care is discussed below.

Prerequisites for addressing psychosocial issues — Management of psychosocial issues requires that symptoms be adequately controlled and that the patient’s relationship with their clinicians be secure and supportive.

Symptom management — Effective symptom management enhances quality of life and allows patients and their families or loved ones to maintain hope, reaffirm important connections, and attain a sense of completion. Good symptom control allows patients more opportunity to preserve roles and activities that have made life meaningful [1-9].

Physical suffering — Physical suffering is one of the greatest concerns as patients with an advanced illness anticipate dying [1,2,10]. Patients with different advanced diseases (such as chronic obstructive pulmonary disease [COPD], acquired immunodeficiency syndrome [AIDS], heart failure, advanced cancer, or renal disease) share symptoms such as pain, fatigue, and breathlessness that are often burdensome and decrease quality of life [11,12].

Psychological, social, and spiritual factors may exacerbate physical symptoms. For instance, depression may amplify pain and other somatic symptoms [13,14]. When physical, psychological, and spiritual sources of distress are intertwined, causing “total pain syndrome,” a fully integrated clinical approach is required to address the multiple dimensions of suffering [15]. (See "Overview of comprehensive patient assessment in palliative care", section on 'Domains of palliative assessment'.)

Pain — Pain is among the most feared and concerning symptoms for palliative care patients, particularly as they approach the end of life. Pain has a distorting effect on personality, behavior, mood, decision-making, and coping. Untreated pain can exacerbate hopelessness and ruminative anxious thoughts, which may lead some patients to consider hastening death or even suicide [15-19]. While anxiety and depression may make pain less tolerable and disrupt functioning [20,21], pain can also exacerbate anxiety, which may resolve when pain is controlled.

Unfortunately, pain may be underreported and/or undertreated in the terminally ill patient.

Several factors may lead to patients underreporting pain: worry about distracting their clinicians from treating the underlying medical condition, belief that they deserve to suffer due to feelings of depression and guilt or in response to existential or spiritual distress, concerns about addiction, misunderstanding how to use analgesics, intolerable analgesic side effects, and the belief that an escalating need for medication may indicate imminent death [22-24].

Even when pain is reported, clinicians may undertreat it due to disbelief in the patient’s reported level of somatic pain [25,26]; overt or subtle bias based on race, sex, socioeconomic status, or appearance [27]; or concern about pain management in patients with a history of substance use disorders. (See "Management of acute pain in the patient chronically using opioids for non-cancer pain".)

A detailed discussion of pain in palliative care patients is provided separately. (See "Assessment of cancer pain".)

A supportive clinician-patient relationship — The clinician-patient relationship can be an important source of solace and security for patients and their families or loved ones. However, like other relationships, it may be subject to strain during the course of a terminal disease [28]. If the patient does not trust the clinician, or if the quality of communication between them is poor or has become strained, it will be difficult for the clinician to gauge the patient’s adjustment as the disease progresses and to provide needed support and a sense of security.

The clinician can pose the following questions to assess the state of the treatment relationship with their patient. The answers can provide clarity to the working relationship and help uncover the patient’s expectations.

“What is your sense of how well we are working together?”

“Are there things I could be doing to be helpful that I'm not doing now?”

Importance of self-awareness — In response to demands on their time and the energy needed to respond to crisis situations, clinicians often cope by suppressing or repressing their emotions towards their patients. However, it is important that clinicians assess these feelings, which may influence the therapeutic relationship. A lack of awareness of one’s own negative emotions or harboring strongly positive feelings about a patient can prompt a variety of maladaptive responses on the part of the clinician, such as:

Distancing oneself

Becoming overinvolved

Conveying a lack of compassion

Failing to set appropriate limits on patient behavior

Terminating or transferring the patient’s care abruptly or without providing due process

In addition, experiencing strong emotions in reaction to patients and/or their loved ones can be a sign that unacknowledged or unexpressed issues are present on the part of the patient (or their loved ones), such as an undiagnosed psychiatric illness (eg, depression or personality disorder) [2,10,29-34].

Taking a few minutes to reflect on one’s caseload at the end of the day and periodically reviewing challenging cases with a colleague may help clinicians to become more conscious of their emotional responses.

Checking in — When discussing sensitive issues with patients, it may be important to check in with the patient from time to time to re-evaluate these concerns with questions like:

“Am I answering your question?”

“How is this going?”

For the patient on pain medication (eg, morphine): “Have you had any worries about the fact that you’re now needing to take the morphine regularly?” This question allows the clinician to assess fears about addiction to pain medication.

Checking in allows the clinician to clarify a patient’s worries, track how their concerns are evolving, and provide the appropriate amount of information when needed by the patient, thereby avoiding overwhelming the patient with too much information.

COMMON ISSUES FOR PATIENTS WITH ADVANCED ILLNESS — The following are some common concerns voiced by patients with advanced illness:

The meaning of the illness (see 'The meaning of the illness' below)

Loss of dignity (see 'Loss of dignity' below)

Fear of increasing dependency on others (see 'Dependency' below)

Fear (see 'Fear' below)

Worries about how much time they have left to live (see 'Time' below)

Worries about loved ones (see 'Concerns about caregivers' below)

Grief and loss (see 'Grief and loss' below)

Keeping these concerns in mind can help the clinician to anticipate, diagnose, acknowledge, and respond effectively to patient and family or loved ones’ distress.

The meaning of the illness — When bad things happen, people search for a reason to explain them. For example, a patient may blame themself for having “caused” their cancer or may attribute their chronic obstructive pulmonary disease (COPD) or terminal heart failure to the fact they were (or are) a smoker. By contrast, other patients may perceive their illness as evidence of abandonment by God, particularly if they fear that the rest of their life will be filled with suffering until death.

The clinician can gain insight to the unique impact of the illness on the patient and their loved ones by asking the patient open-ended questions that elicit the narrative about what they believe has happened [35-37]. Examples of appropriate questions include:

“What is your understanding of what this disease means?”

“How do you think about what’s happened to you?”

“What are your thoughts about what may have caused this disease?”

“What’s been the hardest part for you? For your family or others in your household?”

In this way, clinicians can delineate the meaning of illness and what the patient feels caused it, identify factual inaccuracies about the medical situation, and correct any misunderstandings about the intent of any treatments being rendered [15,38]. These conversations may help clarify the patient and family’s values and experience of illness. In addition, they may also indicate spiritual or existential distress, disruptions in personal relationships, or the presence of depression, which may require the involvement of other members of the palliative care team (eg, spiritual leaders, psychologists, and/or social workers).

Loss of dignity — Serious illness may lead to the gradual erosion of a patient’s sense of self-worth and the meaning of life, resulting in the loss of dignity. Dignity-related concerns in the setting of terminal illness include:

Shifts in identity and role functioning

Concerns about “unfinished business”

Concerns about legacy

Questions about the ongoing purpose of life

Feeling spiritually disconnected

Feeling unsupported or misunderstood by family, other loved ones, or health care providers

Uncontrolled physical symptoms, depression, anxiety, and cognitive clouding also result in a loss of dignity and control and in a sense of diminishment. Clinicians directly involved with the patient can support the patient’s “wholeness” simply by showing they are interested in the patient’s life and concerns beyond the illness. A 2016 consensus-building study of nursing home residents receiving palliative care summarizes dignity-conserving care measures, which include not making residents feel like a burden to others, staff not talking about residents in front of other residents, allowing residents to make choices in daily life, respecting residents’ personal space and need for privacy, and providing freedom to complain without fear of repercussions [39].

Dependency — Many patients lose physical and psychological control as illness progresses, triggering shame and fear, which may amplify isolation. Increasing need for help with daily functions may be humiliating and even lead patients to think of hastening death.

As physical dependency increases, feelings of vulnerability and helplessness add to concerns about becoming a burden to family members or other loved ones in emotional, physical, and financial ways [40]. In addition, the patient may face a diminishing sphere of control, particularly while relinquishing roles and responsibilities [41]. Feelings of anger, guilt, boredom, loneliness, and alienation are common inpatients losing their independence. Shame may arise from the intensity of these emotions, and patients may become distressed by not feeling like themselves. One consequence may be a transient increase in family or household turmoil and conflict due to shifting responsibilities.

If a patient expresses concerns about becoming increasingly dependent on others, the clinician should encourage the patient to talk about these difficult feelings. This will often allow the clinician to provide reassurance that such thoughts represent common responses to serious illness. To foster this dialogue, the clinician might ask the following questions:

“What is it like for you to have to depend more on others?”

“Do you have concerns about burdening others? How do these affect you?”

“What kinds of things that are important to you are you still able to do?”

“What have you had to give up?”

“What are your concerns about controlling symptoms?”

“Do you feel you have been able to express your wishes about your treatment with your clinical team and your family or other loved ones?”

“What kinds of situations do you worry about that might be overwhelming for people who you love and rely on? Or overwhelming to you?”

Listening to the patient discuss these issues is often sufficient to provide comfort, but it is important that the clinician not respond offhandedly. For example, patients should not be told “Don’t worry about anything” as a response to concerns about helplessness. Such reactions may actually increase the patient’s sense of dependency and isolation.

If feelings such as anger threaten the patient’s relationships or lead to dangerous behavior, the clinician should directly address the situation and assess the patient for depression, delirium, and other organic mental states. The clinician should also directly query the patient about feelings of increasing isolation and abandonment and even thoughts of suicide.

Fear — Worsening illness and impending death can evoke fears of helplessness, abandonment, and loss of control. In addition, fear may be accompanied by overwhelming guilt and anxiety as the patient anticipates separation from loved ones. Questions about the exact nature of a patient’s fear can help reduce anxiety and avoid misunderstandings. Three example questions are discussed below:

“What frightens you most about what is happening to you now?” – This question helps orient the clinician to the patient’s present concerns. Commonly, patients will talk about pain, worries about burdening loved ones, or concerns about death and dying. Symptoms should be addressed immediately. Spiritual distress should be acknowledged if present, and referral to a religious or spiritual leader should be offered. Evaluating the patient and family or loved ones’ emotional state is important and may lead to referral to mental health providers.

“What are your fears and worries about what may happen next?” – This question may allow the clinician to deepen the conversation with the patient by focusing more directly on the patient’s future concerns. These often include physical suffering, loss of functioning, existential or spiritual suffering, burdening family or others, grief, prognosis, or how death might occur.

“Do you have particular worries about death or what dying might be like?” – This may be appropriate if the patient brings up the topic of prognosis, death, or dying. It is important to include how physical and emotional symptoms will be managed at the end of life as part of the clinician’s response. In addition, the clinician should avoid providing blanket reassurance, as this may actually exacerbate anxiety.

It is also important that clinicians remember to close difficult conversations with an offer to clarify information provided and/or to discuss other concerns. Pausing periodically during these conversations can be helpful to avoid overwhelming the patient, family, or other persons involved in the discussions. This can be done by asking questions such as [42]:

“What is it like to talk about all these hard things?”

“We’ve talked about some difficult things today; is there anything I’ve said that isn’t as clear as it might be?”

“It seems that what I’ve said may have not been what you’d expected?”

“How are you doing with this?”

Time — When patients ask about their impending mortality, the use of open-ended questions can clarify the prognostic question they are most interested in having answered. This can help the clinician focus on the kind of information a patient wants, rather than information the patient may find relatively unhelpful (eg, statistics about prognosis).

For example, if the patient asks about how much time they have left, the clinician may follow up with:

“When people ask this question they often have something particular in mind, for example, an event or a trip that they want to participate in. Are you thinking about something like that?” [42]

“People sometimes look for different kinds of information when they ask a question about the future. Can you help me by telling me your particular concerns?”

“How much information do you want about what is likely to be ahead with your illness?”

Another potentially useful method to address issues related to time is to give the patient a choice about how to proceed with a discussion [42]. As an example, a clinician could respond to such questions with the following: “There are different ways I can answer you, so help me think about what might be best for you. I could talk about the average amount of time a person in your situation lives. Or, we can think about the worst-case and best-case scenarios, with the idea that you can plan for the worst but hope for the best. Would one of these be helpful?” [42]

Concerns about caregivers — Patients worry about the physical and emotional toll of their illness on spouses, other family members or loved ones, or others who assume the role of caregiver. Caregivers may have increased responsibilities for childcare, care of older adults, and management of household tasks, as well as care of the patient and the burdens imposed by anticipatory grief [43]. However, caregivers play a major role in how patients cope with their life-limiting illness. (See 'Social support' below.)

Family members and others often make major life changes in the course of caring for patients with terminal illness. Many households report loss of savings and income when spouses or others quit work to provide care [43,44]. The emotional toll on family members or other loved ones can lead to depression and stress-related symptoms [45,46]. In addition, caregivers may neglect their own health care, missing routine screening appointments or follow-up care for chronic conditions. Patients frequently feel responsible for bringing these burdens on others.

Clinicians can help address these concerns through interventions that require only modest effort. These include simply asking caregivers how they are holding up; considering ways to help, such as by arranging additional home services for patients; and encouraging them to include self-care activities. These interventions have been shown to be helpful in reducing psychological symptoms in caregivers of patients in palliative care [44], which in turn can help relieve some of the concerns on the part of patients themselves.

Grief and loss — Serious illness causes patients to confront current and anticipated physical loss, as well as changes in role functioning and relationships. As the disease progresses, patients and their families or loved ones must adjust to these changes and reestablish a new equilibrium. Values, spiritual beliefs, personality style, characteristic methods of coping, and personal, family, and cultural traditions all influence the way a person comes to terms with a terminal prognosis [47].

Grief is an intrinsic part of the human response to loss. For the patient, grief may entail reassessment of the scope of personal accomplishments, mourning for the loss of a desired future, and relinquishing many of the roles that have sustained a sense of purpose. There is considerable variation in sequencing and intensity of grief reactions; many patients do not proceed in a linear fashion through the stages of grief and may skip certain stages or revisit previously experienced stages based on triggers that emerge. (See "Grief and bereavement in adults: Clinical features", section on 'Course'.)

Following the death of a loved one, research suggests that survivors experience a pattern in which disbelief peaks at one month, yearning at four months, anger at five months, and depression at six months post-loss. This suggests that surviving loved ones who continue to have intense, pervasive, unmitigated, or persistent negative effects for seven or more months might benefit from psychosocial evaluation and treatment. (See "Grief and bereavement in adults: Clinical features", section on 'Associated psychopathology'.)

MEDIATORS OF COPING — Coping refers to the characteristic ways in which a person maintains psychological and social equilibrium. To assess a patient’s coping, the following questions are helpful:

“How have you handled difficult times in the past?”

“What and whom do you depend upon when you are going through tough times?”

The ways patients cope are mediated by several factors, including:

Hope (see 'Hope' below)

Family or other loved ones and social support (see 'Social support' below)

Spiritual and religious beliefs (see 'Spiritual beliefs and religious community' below)

Denial (see 'Denial' below)

In addition, economic circumstances play a role in how one copes and are an important factor that contributes to disparities in care. (See 'Economic circumstances' below.)

Hope — Serious and progressive illness evokes distress in patients, families, loved ones, informal caregivers, and clinicians, engendering fear, anxiety, anger, dread, sadness, helplessness, and uncertainty. Hope permits patients, their families, and loved ones to cope with these difficult emotions and helps them endure the stresses of treatment [48,49]. However, the desire for hope may conflict with the desire for full disclosure of the prognosis. Patients often oscillate between the two, struggling to find a sense of emotional equilibrium.

Hope is not dependent upon undoing what cannot be changed or deceiving patients about the future. It is founded on trust, connection, and preservation of dignity, identity, and the sense of self. In the face of such struggles and clinical uncertainty about the imminence of death, it is often difficult for clinicians to imagine how hope can be maintained in the face of conversations about death, prognosis, and/or moving beyond curative treatments [50]. However, engaging in direct discussion with the patient regarding feelings of hopelessness and helplessness acknowledges reality while offering a professional relationship within which these feelings may be managed.

An approach where the clinician relays hopes for the best while also considering feared outcomes permits acknowledgment of the gravity of the disease while being able to find meaning and purpose in the remaining time. In addition, the clinician can nurture hope by confronting problems directly, conveying a caring attitude, focusing on achievable short-term goals, and involving the patient as an active partner in care.

Other measures that may help support hope for these patients include [51-55]:

Engaging in conversations about their values and what gives their lives meaning.

Supporting the patient’s wholeness and personhood whenever possible. For example, for a patient who has expressed the desire not to die in the hospital while connected to tubes and lines, to work with that patient (and family or loved ones, even if not in agreement) to meet that goal.

Exploring and providing a vision of what important experiences they can have in their remaining time.

Helping the person reconnect with important relationships from their past and examining, addressing, and resolving or rectifying conflict, if able.

Assisting the person to rediscover aspects of themselves that may have been disrupted by illness.

Recognizing past accomplishments, which can also help them focus on the legacy they will leave behind.

Social support — Family members, close friends, partners, or other loved ones can have a far greater impact upon a patient’s experience of illness and on their own long-term health and happiness than can any health care professional. Friends and relatives take care of the patient. However, in the context of a terminal illness, even well-functioning support structures can become destabilized by grief, helplessness, and exhaustion. Alternatively, individuals who are designated as health care proxies may experience an emotional burden when asked to make decisions for a terminally ill loved one [56]. (See "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

A family’s resilience under stressful conditions seems dependent on their committed attachment to each other, their ability to communicate and disagree without rupturing the bonds of affection and respect, and a capacity to solve problems and make decisions in a cooperative way [57]. Although there is limited empirical research, family theory and clinical experience support the value of an assessment of family functioning [58]. These concepts are also applicable to other domestic arrangements.

Questions that can be used to assess family or household function are listed below [10,57,59-63]. These questions do not necessarily need to be addressed to the terminally ill patient; they can alternatively be directed to other family members or those who live with the patient if the patient is unable to participate in discussions:

“Can you tell me what has happened since your loved one was diagnosed?”

“How has their illness affected you? How has it affected others in the family or household?”

“How has this situation affected your relationship with your loved one?”

“How is your family, or those in your household, including your loved ones, sharing information and making decisions about medical issues?”

“Who in your family or among your household or circle of friends are you most concerned about?”

“Have there been any changes in the way your family or household functions since your loved one became ill?”

In addition to evaluating the family structure and function, identifying important relationships is a valuable part of clinical care for all patients with advanced illness. The following additional questions can be asked:

“Is there someone special you talk with, confide in, and rely on?”

“How are your friends, loved ones, and family responding to your being ill?”

Spiritual beliefs and religious community — Patients often call upon spiritual or religious beliefs when confronting serious illness [64]. Spirituality often helps people accommodate and cope with the illness [65-68], adjust to disability [69], and feel less depressed [70,71]. A lack of spiritual wellbeing can be experienced as holistic suffering, which encompasses feelings of isolation, hopelessness, and meaninglessness and impairs coping [72]. Among advanced cancer patients who access support from religious communities, additional spiritual support from the medical team may increase rates of hospice use and decrease aggressive interventions at end of life [73]. The topic of spiritual issues, including a discussion of how several of the major religions deal with death and suffering at the end of life and how religious coping may affect quality of life, is discussed in more detail elsewhere. (See "Overview of spirituality in palliative care" and "Influence of spirituality and religiousness on outcomes in palliative care patients".)

Denial — Denial is a psychological mechanism by which a patient rejects, either completely or partially, the repercussions and effects of an illness (or treatment), thus avoiding painful feelings, such as hopelessness, fear, anxiety, grief, and anger. Denial is always contextual. The context might be a crisis, such as disease progression, or an attempt to preserve the status quo in familial or treatment relationships. Although denial may lead to rigid avoidance of difficult new realities, it may alternatively enable the patient to preserve functioning, particularly if they are able to partially acknowledge bad news [74-76].

When confronted with a patient’s denial, the clinician should first consider the following question: “Is denial helping the patient to deal with the illness, or is it interfering with that patient’s ability to seek appropriate care and preserve significant relationships?”

If denial is interfering with care, relationships, or end of life planning, the clinician should address it with gentle but direct statements such as: “I know that thinking about this now is painful, but I want to help you have as much control as possible over this important decision. If we don’t plan for a worst-case scenario, we may lose that chance” [77].

If denial is constructive, enhancing the patient’s life without adversely affecting relationships or care, it should not be confronted.

Economic circumstances — Financial pressures can be important factors in the ability of patients and their families to cope with terminal illness. To assess a patient’s economic circumstances, the clinician can ask a simple question: “Is money a problem?” (See "Overview of comprehensive patient assessment in palliative care".)

Understanding economic circumstances is important to address disparities in medical care among palliative care patients. In cancer care and in many other end-stage diseases, it appears that race, in synergy with lower socioeconomic status, limited access to health care, cultural beliefs, and low health literacy all perpetuate disparities in health care [78-82]. (See "Cross-cultural care and communication", section on 'Racial and ethnic disparities in health care'.)

PSYCHOSOCIAL COMPLICATIONS — The will to live may fluctuate in patients with advanced disease as a result of grief, the physical toll taken by the illness, and/or spiritual, family, and personality issues. Depression, anxiety, or organic mental disorders may contribute to this instability [15,83].

A 2007 systematic review reported that approximately 50 percent of patients with advanced cancer met criteria for a psychiatric disorder [84]. The most common were adjustment disorders, followed by major depression, anxiety disorders (generalized anxiety, panic disorder, and posttraumatic stress disorder), and less-severe depressive syndromes [84-87]. High levels of major depression and depressive affect are also found in end-stage kidney disease, congestive heart failure, and chronic obstructive pulmonary disease (COPD) [88-94]. People with chronic medical disorders may have more functional disability and use more medical resources [95,96].

Patients with a history of psychiatric illness or trouble coping have an increased risk for renewed difficulties at the end of life [13,14,97]. Considering psychiatric vulnerability is, therefore, an important part of the clinical assessment. We have found the following questions useful:

“Have you ever had trouble with depression? Anxiety? Alcohol use? Drug use?”

“Have there been times when you had trouble coping?”

“Have you ever sought treatment for emotional difficulties?”

“Was the treatment helpful?”

Depression — While distress and grief are normal responses to the losses encountered with life-threatening illness, unremitting low mood, guilt, hopelessness, and pervasive loss of interest in activities and relationships often indicate the presence of depression. The diagnosis of depression is complicated in patients with life-limiting disease (eg, cancer, COPD, heart failure, or end-stage kidney disease) because symptoms of depression overlap with constitutional, cardiovascular, respiratory, and uremic symptoms [88,89,91,92,98]. Clinicians may need to consider depression and anxiety as causes of worsening fatigue or anorexia in the absence of substantial deterioration in kidney, heart, or respiratory function. Other signs of depression include indecisiveness, persistent irritability, and loss of interest [91,92,99]. (See "Assessment and management of depression in palliative care".)

Patients who suffer from depression at the end of life should be treated with psychosocial support and effective medications. Cognitive behavioral therapy has been found to be effective for mild symptoms of anxiety and depression in illnesses such as COPD [99,100]. (See "Assessment and management of depression in palliative care", section on 'Treatment'.)

Anxiety — Anxiety is often seen as a natural consequence of confrontation with or awareness of mortality. Patients with high levels of anxiety experience intense distress and interference with their functioning. Lower levels of anxiety, on the other hand, may energize the patient and spur adaptation and coping. (See "Overview of anxiety in palliative care".)

Patients with advanced illness who have an anxiety disorder may experience problems with the clinician-patient relationship. They may have some difficulty trusting their clinicians and avoid asking questions. They may hesitate to reveal concerns that they will be offered futile therapies or that their symptoms will be inadequately controlled [101]. If a patient is very anxious and unable to say what is causing the anxiety, it may be helpful to explore memories about others who have died (especially close family members or other loved ones) as a way of identifying the potential cause. There is a lack of data to inform an optimal pharmacologic approach to managing anxiety in the palliative care setting [102], and prospective clinical trials are needed. (See "Overview of anxiety in palliative care", section on 'Treatment approach'.)

Personality disorders — When a person is under stress, personality traits, including dysfunctional ones, tend to be amplified. While intensification of behaviors does not interfere significantly with medical care for most patients, some patients under stress may behave in uncharacteristically demanding, seductive, manipulative, or aggressive ways. By contrast, people with personality disorders display chronic, dysfunctional patterns of behavior in interpersonal relationships and are unable to modulate feelings and behavior. These difficult interpersonal styles generally persist and may complicate medical care and relationships with loved ones in the setting of advanced illness. Patients with personality disorders may evoke strong emotions in clinicians that include feeling overwhelmed, inadequate, disengaged, parental/overprotective, mistreated, sexually aroused, and/or guilty [84]. (See "Overview of personality disorders", section on 'Clinical manifestations'.)

Narcissistic, borderline, and histrionic personality styles most commonly cause difficulty in medical settings [32,34,103-113].

Patients with borderline personality disorder have a provocative and turbulent style characterized by marked mood swings (even moment to moment), impulsivity, recurrent suicidal threats or attempts, and intense anger. These individuals often oscillate between extremes of idealization and devaluation of important clinicians and provide different feelings and information to different providers (splitting). (See "Borderline personality disorder: Epidemiology, pathogenesis, clinical features, course, assessment, and diagnosis".)

Patients who exhibit a narcissistic interpersonal style are extremely vulnerable to humiliation and to social slights that other patients readily forgive. They present a seemingly tough, extremely independent and controlling outer shell that covers extreme vulnerability and desperate fears of dependency. Clinicians often find these patients demanding, exploitative, and entitled. (See "Narcissistic personality disorder: Epidemiology, pathogenesis, clinical manifestations, course, assessment, and diagnosis".)

A patient with a histrionic style may be overly dramatic or seductive and may flood clinicians with overwhelming displays of affect.

Substance abuse — Substance abuse complicates medical care and mimics and/or magnifies depression and anxiety. The prevalence of alcoholism ranged from 7 to 27 percent in United States studies from different palliative care settings [114,115]. Approximately 20 percent of patients who need opioids for the management of cancer-related pain are at risk for the development of nonmedical opioid use or a substance abuse disorder [116]. (See "Clinical assessment of substance use disorders".)

For some end-stage illnesses, underlying substance abuse may have contributed to the initial diagnosis. Cancers for which alcohol or substance abuse is a recognized contributing factor include squamous cell cancers of the head and neck and pancreatic, hepatic, rectal, lung, and breast cancers [117]. Smoking, which is more prevalent in patients with a history of alcohol abuse, is a risk factor for end-stage vascular, cardiac, and lung disease, as well as cancer. End-stage liver disease can be the result of both alcohol and/or intravenous drug abuse.

Delirium — Between 40 and 85 percent of palliative care patients experience delirium, particularly as they enter the last weeks of life [118,119]. Delirium is often frightening to patients and distressing for families, loved ones, and other caregivers. It can interfere with the recognition and treatment of other symptoms such as pain. Delirium is frequently confused with depression, psychosis, or anxiety and should be considered as part of the differential diagnosis whenever changes in mood, behavior, or cognition are being evaluated [120,121]. (See "Clinical features and diagnosis of cognitive impairment and delirium in patients with cancer" and "Approach to symptom assessment in palliative care", section on 'Psychological and cognitive symptoms'.)

As with other symptoms at the end of life, goals of care should determine the extent of the diagnostic evaluation and the choice of treatment. It should also be noted that underlying pain may be the trigger for delirium, and interventions to manage pain may improve symptoms of delirium. (See "Delirium and acute confusional states: Prevention, treatment, and prognosis" and "Overview of managing common non-pain symptoms in palliative care", section on 'Treatment'.)

COMMUNICATION WITH THE FAMILY OR OTHER MEMBERS OF THE PATIENT’S SOCIAL NETWORK — Clinicians should gain an understanding of the patient and their loved ones, which can inform how to best communicate with them. In addition, clinicians should be aware that sometimes the need for information differs between patients and their loved ones. Some patients and families or loved ones wish to learn about all the risks and benefits of relevant treatment options and to serve as active partners in decision making. Others may simply prefer that the clinician make the decision, especially if patients are overwhelmed. Being aware and understanding the differences between the patient’s needs and those of their loved ones can help the clinician communicate in this stressful period. (See "A patient-centered view of the clinician-patient relationship", section on 'Communication between patient and clinicians'.)

For patients who are unable to communicate with their clinicians (eg, due to the disease itself, a reduced level of consciousness, or delirium), any of the above questions discussed may also be posed to the family or other close individuals, particularly in situations where the patient no longer has decision-making capacity. (See "Legal aspects in palliative and end-of-life care in the United States", section on 'Decision-making capacity'.)

For the parent of dependent children who is nearing the end of life, both the patient and their spouse frequently have questions about how to talk to their children about the illness and impending death. The approach to preparing children for the impending death of a parent is discussed separately. (See "Preparing children and adolescents for the loss of a loved one".)

COMMUNICATING WITH PATIENTS ABOUT THE END OF LIFE — Clinicians should not shy away from end-of-life discussions, particularly for those facing a life-limiting illness. Several studies of end-of-life discussions found no evidence that conversations about prognosis were associated with increased emotional distress [122]. Rather, patients who reported discussions with their clinicians were more likely to acknowledge that they were terminally ill and less likely to receive invasive procedures within the last week of life or to die in the intensive care unit.

Unfortunately, the data suggest that patients nearing the end of life often are not aware of the gravity of their particular situation. For example, in a large cohort study of patients with metastatic lung and colorectal cancer, 69 percent of patients with lung and 81 percent of patients with colorectal cancer did not understand that chemotherapy was not at all likely to cure their cancer [123]. Although comparative studies are presently lacking, it is plausible that patients with chronic diseases (eg, chronic obstructive pulmonary disease [COPD], chronic kidney or heart failure) may have even less of an understanding of the realities and prognosis of their illness compared with patients with a terminal cancer or neurodegenerative disorder. This may be due to a waxing and waning disease tempo marked by periods of apparent stability, sudden acute deteriorations, and then a return to a lower plateau [124]. For clinicians, the attention required to manage complex and acute symptoms combined with difficulty in predicting the illness trajectory may lead patients and families or loved ones to behave as if the pattern of near misses will continue indefinitely [60,125-130]. This may result in a delay or avoidance of discussions of end-of-life goals and values until the patient is actively dying. When patients and families or loved ones are not aware of a shortened prognosis, they are likely to be unprepared as they face issues at the end of life and less able to invoke adaptive coping strategies [131].

The approach to conversation can influence whether or not a patient engages in discussion about prognosis and end of life. This was examined in a 2014 systematic review that included 19 studies in its analysis [132]. Among their findings were that:

Fishing questions (eg, “Is there anything else you’d like to talk about?”) were rarely effective in getting patients to talk about difficult future matters.

Overtly linking questions and future plan discussions directly to what patients have said or have not said (eg, “You mentioned you were afraid of pain at the end of life, is that still something you are concerned about?”) appear to be effective ways to encourage patients to talk about the future and to actively engage in planning for subsequent care.

Hypothetical questioning (eg, “Say you got really sick and could not make decisions, who would you want to make decisions for you?”) appears to be a powerful and effective way to encourage patients to discuss difficult topics.

Silence can be an effective means to deepen conversations. Silence allows emotions to rise to the surface so that they can be processed and discussed. In normal discourse, people rarely leave gaps of longer than 0.3 seconds following a question, and gaps longer than a second are otherwise rare, unless it is due to another activity (eg, recordkeeping). Because people have a low tolerance for silence in conversation, silent pauses can work to encourage talk.

Shifting topics from “negative” topics (eg, delivering bad news) to “positive” ones (eg, hope and perseverance) may suppress further talk about difficult issues.

Similarly, others have proposed a checklist approach to discussion of serious illness care goals [133]. (See "Discussing goals of care", section on 'Essential elements'.)

These data suggest that clinicians can initiate discussions regarding prognosis and/or end of life in a number of ways and that no one approach is optimal in all situations. Through sensitive communication with seriously ill patients, clinicians can help their patients toward living as well as possible with a serious illness and, ultimately, to an “appropriate death” [134], which can be described as “a death one might choose, had one a choice.” The goal for most patients is to live “as well as possible,” and communication is a critical element that allows patients to retain a sense of personal significance, wholeness, and self-esteem, which enable this priority to be actualized [135]. Discussions about serious illness improve quality of life for patients [135-137] as well as for their families and loved ones, particularly surrogate decision-makers, who experience less distress when they know which treatments are consistent with the patient’s preferences [56].

SUMMARY

Psychosocial concerns are nearly universal among patients who have advanced life-threatening illnesses. Patients face challenges to their sense of wholeness. The ways in which people respond to these threats to personal integrity range from highly effective strategies for coping to dysfunctional reactions, often in the same person at different times. (See 'Introduction' above.)

The clinician plays an important role in the care of patients in palliative care by helping them to identify sources of meaning and purpose and by providing support for their feelings, including sadness about saying goodbye or worries about failing loved ones by feeling ready to die. Of note, the clinician does not need to do this alone and may call upon chaplains, mental health providers, and palliative care colleagues as needed. (See 'The clinician’s role' above.)

It is important that clinicians be aware of their own feelings toward their patients. A lack of awareness of one’s own negative emotions or harboring strongly positive feelings about a patient can prompt a variety of maladaptive responses on the part of the clinician. (See 'Importance of self-awareness' above.)

By understanding how a patient views the meaning of life, clinicians may determine the sense of the patient and family or other loved ones’ values and experience of illness. In addition, it may also uncover spiritual or existential distress, disruptions in personal relationships, or the presence of depression, which may require the involvement of other members of the palliative care team (eg, spiritual leaders, psychologists, and/or social workers). (See 'The meaning of the illness' above.)

Common issues for palliative care patients include the loss of dignity, increased dependence, fear of the future, concerns about time, and concerns about their loved ones and caregivers. (See 'Common issues for patients with advanced illness' above.)

Coping refers to the characteristic ways in which a person maintains psychological and social equilibrium. Coping is moderated by multiple factors, including hope, social support, spiritual beliefs and religious communities, and denial. (See 'Mediators of coping' above.)

Understanding economic circumstances is important to addressing disparities in medical care, even among palliative care patients. In cancer care and in many other end-stage diseases, it appears that race, in synergy with lower socioeconomic status, limited access to health care, cultural beliefs, and low health literacy, perpetuates disparities in health care. (See 'Economic circumstances' above.)

End-of-life discussions, particularly those that occur before the last month of life, are associated with improvements in quality of life, receipt of desired care, reduced physical suffering, improved family or loved ones’ coping, and increased use of hospice; clinicians have a responsibility to raise these issues with patients as the disease begins to worsen. Discussions regarding end of life and goals of care may also increase patient satisfaction with care and decrease the likelihood of stress, anxiety, and depression among surviving caregivers. (See 'Communicating with patients about the end of life' above.)

ACKNOWLEDGMENT — The editorial staff at UpToDate would like to acknowledge Laurie Rosenblatt, MD, who contributed to an earlier version of this topic review.

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Topic 2195 Version 26.0

References

1 : Measuring quality of care at the end of life: a statement of principles.

2 : The concept of quality of life of dying persons in the context of health care.

3 : The nature of suffering and the goals of medicine.

4 : Factors considered important at the end of life by patients, family, physicians, and other care providers.

5 : Community physicians who provide terminal care.

6 : In search of a good death: observations of patients, families, and providers.

7 : Whose death is it, anyway?

8 : Quality end-of-life care: patients' perspectives.

9 : The nature of suffering and the nature of opportunity at the end of life.

10 : Understanding physicians' skills at providing end-of-life care perspectives of patients, families, and health care workers.

11 : A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease.

12 : Symptom burden, depression, and spiritual well-being: a comparison of heart failure and advanced cancer patients.

13 : Symptom burden, depression, and spiritual well-being: a comparison of heart failure and advanced cancer patients.

14 : Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer.

15 : Patient requests to hasten death. Evaluation and management in terminal care.

16 : Psychiatric aspects of cancer pain management

17 : The relationship of pain and symptom management to patient requests for physician-assisted suicide.

18 : Characteristics of terminal cancer patients who committed suicide during a home palliative care program.

19 : Cancer pain and psychosocial factors: a critical review of the literature.

20 : The association of depression and anxiety with health-related quality of life in cancer patients with depression and/or pain.

21 : The hidden error of mismanaged pain: a systems approach.

22 : Patient barriers to optimal cancer pain control.

23 : Patient-related barriers to management of cancer pain.

24 : The management of cancer pain.

25 : Correlation of patient and caregiver ratings of cancer pain.

26 : Pain and its treatment in outpatients with metastatic cancer.

27 : Pain and treatment of pain in minority patients with cancer. The Eastern Cooperative Oncology Group Minority Outpatient Pain Study.

28 : Pain and treatment of pain in minority patients with cancer. The Eastern Cooperative Oncology Group Minority Outpatient Pain Study.

29 : Assessing and managing depression in the terminally ill patient. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians - American Society of Internal Medicine.

30 : Oncologists' recognition of depression in their patients with cancer.

31 : Narcissistic issues in the training experience of the psychotherapist

32 : Taking care of the hateful patient.

33 : Hate in the countertransference

34 : Personality disorders in the oncology setting.

35 : Personality disorders in the oncology setting.

36 : Personality disorders in the oncology setting.

37 : What narrative competence is for.

38 : What narrative competence is for.

39 : Identifying Markers of Dignity-Conserving Care in Long-Term Care: A Modified Delphi Study.

40 : Burden to others and the terminally ill.

41 : Self-management: Enabling and empowering patients living with cancer as a chronic illness.

42 : Self-management: Enabling and empowering patients living with cancer as a chronic illness.

43 : The impact of serious illness on patients' families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.

44 : Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers.

45 : Palliative care: views of patients and their families.

46 : Caring for Cancer Patients at Home: The Effect on Family Caregivers

47 : Prognostic acceptance and the well-being of patients receiving palliative care for cancer.

48 : Therapeutic value of hope.

49 : What contributes to hope in the cancer patient?

50 : Diagnosing and discussing imminent death in the hospital: a secondary analysis of physician interviews.

51 : American society of clinical oncology statement: toward individualized care for patients with advanced cancer.

52 : "I wish things were different": expressing wishes in response to loss, futility, and unrealistic hopes.

53 : Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the "elephant in the room".

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

55 : Therapeutic life review in palliative care: a systematic review of quantitative evaluations.

56 : Systematic review: the effect on surrogates of making treatment decisions for others.

57 : Working with families in palliative care: one size does not fit all.

58 : Putting the illness in its place: discussion groups for families with chronic medical illnesses.

59 : Palliative care in the intensive care unit: barriers, advances, and unmet needs.

60 : Missed opportunities during family conferences about end-of-life care in the intensive care unit.

61 : Dying patients in the intensive care unit: forgoing treatment, maintaining care.

62 : Barriers to quality end-of-life care in West Virginia ICU units: physicians' and nurses' prospectives.

63 : Conflicts regarding decisions to limit treatment: a differential diagnosis.

64 : Conflicts regarding decisions to limit treatment: a differential diagnosis.

65 : Religion and health: is there an association, is it valid, and is it causal?

66 : How religion influences morbidity and health: reflections on natural history, salutogenesis and host resistance.

67 : Religious involvement and the health of the elderly: some hypotheses and an initial test

68 : Religion and physical health: the role of personal faith and control believers

69 : Religious coping and cognitive symptoms of depression in elderly medical patients.

70 : Religion, disability, depression, and the timing of death

71 : Religion, disability, depression, and the timing of death

72 : Treatment of holistic suffering in cancer: A systematic literature review.

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

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

75 : Death denial.

76 : Denial in the medical interview. Recognition and management.

77 : Perspectives on care at the close of life. Psychological considerations, growth, and transcendence at the end of life: the art of the possible.

78 : Racial and ethnic disparities in the receipt of cancer treatment.

79 : Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences.

80 : Racism and health inequity among Americans.

81 : Disparities in cancer care among racial and ethnic minorities.

82 : Sociodemographic factors contribute to the depressive affect among African Americans with chronic kidney disease.

83 : Will to live in the terminally ill.

84 : Psychiatric disorders in advanced cancer.

85 : Psychiatric disorders and mental health service use in patients with advanced cancer: a report from the coping with cancer study.

86 : Psychiatric disorders and mental health service use in patients with advanced cancer: a report from the coping with cancer study.

87 : The Structured Clinical Interview for DSM-III-R (SCID). II. Multisite test-retest reliability.

88 : Depression in hospitalized older patients with congestive heart failure.

89 : Major depression and physical illness trajectories in heart failure and pulmonary disease.

90 : Effect of depression on prognosis in heart failure.

91 : Depression in patients with chronic renal disease: what we know and what we need to know.

92 : Depression in end-stage renal disease patients treated with hemodialysis: tools, correlates, outcomes, and needs.

93 : Prevalence and risk factors for depressive symptoms in persons with chronic obstructive pulmonary disease.

94 : Psychosocial aspects of chronic disease: ESRD as a paradigmatic illness.

95 : Major depression in individuals with chronic medical disorders: prevalence, correlates and association with health resource utilization, lost productivity and functional disability.

96 : Trajectories of disability in the last year of life.

97 : The request to die: role for a psychodynamic perspective on physician-assisted suicide.

98 : Depression is common and precludes accurate assessment of functional status in elderly patients with congestive heart failure.

99 : Effects of medical and psychological treatment of depression in patients with COPD--a review.

100 : Palliative care for patients with chronic obstructive pulmonary disease: current perspectives.

101 : Anxiety disorders in advanced cancer patients: correlates and predictors of end-of-life outcomes.

102 : Drug therapy for symptoms associated with anxiety in adult palliative care patients.

103 : Borderline personality disorder in primary care.

104 : Management of the borderline patient on a medical or surgical ward: the psychiatric consultant's role.

105 : Management of the borderline patient on a medical or surgical ward: the psychiatric consultant's role.

106 : Management of the borderline patient on a medical or surgical ward: the psychiatric consultant's role.

107 : The special-problem patient: victim or agent of splitting?

108 : Getting to "no": strategies primary care physicians use to deny patient requests.

109 : Helplessness in the helpers.

110 : Management of the difficult patient.

111 : Burden of difficult encounters in primary care: data from the minimizing error, maximizing outcomes study.

112 : Burden of difficult encounters in primary care: data from the minimizing error, maximizing outcomes study.

113 : Burden of difficult encounters in primary care: data from the minimizing error, maximizing outcomes study.

114 : Use of the CAGE questionnaire for screening problem drinking in an out-patient palliative radiotherapy clinic.

115 : Frequency of symptom distress and poor prognostic indicators in palliative cancer patients admitted to a tertiary palliative care unit, hospices, and acute care hospitals.

116 : Frequency, Predictors, and Medical Record Documentation of Chemical Coping Among Advanced Cancer Patients.

117 : Substance abuse issues in cancer patients. Part 1: Prevalence and diagnosis.

118 : Delirium in terminally ill cancer patients.

119 : Psychiatric morbidity in terminally ill cancer patients. A prospective study.

120 : Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer.

121 : Delirium presenting with symptoms of depression.

122 : Medical care and emotional distress associated with advanced cancer patients' end-of-life discussions with their physicians (abstract #6505)

123 : Patients' expectations about effects of chemotherapy for advanced cancer.

124 : End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.

125 : Palliative care in end-stage renal disease: illness trajectories, communication, and hospice use.

126 : Palliative and end-of-life care for patients with severe COPD.

127 : Barriers and facilitators to end-of-life care communication for patients with COPD.

128 : Review article: a model of palliative care for heart failure.

129 : End-of-life planning in heart failure: it should be the end of the beginning.

130 : When all else has failed: Nurses' perception of factors influencing palliative care for patients with end-stage heart failure.

131 : End-of-life care preferences of patients enrolled in cardiovascular rehabilitation programs.

132 : How to communicate with patients about future illness progression and end of life: a systematic review.

133 : Communication about serious illness care goals: a review and synthesis of best practices.

134 : Appropriate death and the hospice program.

135 : Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.

136 : End-of-life care discussions among patients with advanced cancer: a cohort study.

137 : Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study.