Challenging interactions with patients and families in palliative care

INTRODUCTION — Palliative care specialists are frequently asked to care for patients at a time of vulnerability or crisis. When difficult interactions with patients and/or their family members occur, optimal care delivery can be compromised.

In this topic, "challenging" or "difficult" refers to specific interactions between health care providers and patients or family members that can range from awkward or uncomfortable conversations to life-threatening behaviors on the part of the patient or family members. There is substantial subjectivity regarding what constitutes a "difficult" interaction. This topic will provide a practical and safety-oriented approach to challenging interactions in palliative care settings.

Issues related to the care of adults who are deemed incompetent, intimate partner violence, and child or elder abuse are discussed elsewhere. Approaches to improving the therapeutic relationship in individuals with personality disorders are also discussed elsewhere:

●(See "Legal aspects in palliative and end-of-life care in the United States".)

●(See "Assessment of decision-making capacity in adults".)

●(See "Intimate partner violence: Intervention and patient management" and "Elder abuse, self-neglect, and related phenomena" and "Approaches to the therapeutic relationship in patients with personality disorders" and "Physical child abuse: Diagnostic evaluation and management".)

●(See "Intimate partner violence: Intervention and patient management" and "Elder abuse, self-neglect, and related phenomena" and "Approaches to the therapeutic relationship in patients with personality disorders" and "Physical child abuse: Diagnostic evaluation and management".)

●(See "Intimate partner violence: Intervention and patient management" and "Elder abuse, self-neglect, and related phenomena" and "Approaches to the therapeutic relationship in patients with personality disorders" and "Physical child abuse: Diagnostic evaluation and management".)

●(See "Intimate partner violence: Intervention and patient management" and "Elder abuse, self-neglect, and related phenomena" and "Approaches to the therapeutic relationship in patients with personality disorders" and "Physical child abuse: Diagnostic evaluation and management".)

SCOPE OF THE ISSUE — Challenging interactions in the medical setting can be understood as interpersonal exchanges involving strong emotions such as anger, frustration, fear, despair, or humiliation. Associated behaviors include verbal outbursts, speaking or acting disrespectfully, threats, destruction of property, or physical altercations [1-3].

There are few data on the frequency of challenging patient and/or family encounters in palliative care, but they are especially likely in the setting of intensive care decision making, particularly when trust has not been established [4]. While early reports focused almost exclusively on the characteristics of patients, who were described with labels such "difficult" or "demanding" [5,6], more recent research suggests that difficult encounters are due to a complex set of factors that may additionally or alternatively reflect clinician factors or health care system failures [7]. Three main domains contribute to clinical encounters judged by both patients and clinicians as problematic: patient characteristics, clinician characteristics, and health care system issues (table 1) [1].

Miscommunication contributes to both hospital adverse events and malpractice claims [8,9]. Such interpersonal and "system issues" add to the stress levels of patients, families, and providers and increase the likelihood of difficult encounters. Despite the common occurrence of challenging interactions, most clinicians do not receive formal training in how to approach these situations.

Unfortunately, there is neither a standard of care nor a definitive evidence base to guide the management of challenging interactions in the palliative care setting. Most knowledge about this topic is derived from clinical experience, narrative reports, and extrapolation from small studies from other fields (eg, oncology; primary care).

GENERAL MANAGEMENT STRATEGIES — Recommendations for optimal patient interactions include [10]:

Communication

●Demonstrate basic professional manners, eg, try to be on time, knock on the patient's door before entering, sit down whenever possible, ask permission to discuss sensitive subjects, and solicit questions after sharing information and recommendations ("What questions do you have for me?" rather than "Do you have any questions?").

●Be direct, clear, honest, and as specific as possible.

●Acknowledge limitations in the ability to predict treatment responses or outcomes.

●Provide consistent messaging about the plan of care and behavioral expectations of the patient (employ interdisciplinary team meetings, rounding as teams, and debriefing after behavioral incidents so as to promote consistent care plans).

●Minimize fragmented communication by designating a team member as a patient liaison, and try to limit changes in provider coverage and system complexity.

●Respond to challenging interactions in a neutral, nonpejorative, and empathic manner.

●Be explicit with patients about rules and behavioral expectations. For example, it may be necessary to state that physical threats or profane, offensive, and racist language will not be tolerated. Data are mixed with respect to the effectiveness of behavioral contracts [11]. Nonetheless, written rules and expectations can help minimize confusion and conflicts with patients.

●Be specific about how a particular behavior is problematic rather than making a general statement that the patient is difficult or behaving badly.

Other aspects of management

●Identify helpful family members, other key advisors (eg, religious or spiritual), and potential surrogate decision makers as early as possible.

●Be mindful about countertransference – Countertransference refers to the clinician's conscious and unconscious thoughts or feelings evoked during treatment. These must be examined and understood in order for the relationship to be beneficial. Further, recognizing countertransference provides data that might help the clinician to understand problems the patient encounters in relationships outside of therapy. Clinician reactions to the patient have been shown to impact the quality of the therapeutic alliance [12]. (See "Unipolar depression in adults: Psychodynamic psychotherapy", section on 'Countertransference'.)

●Involve mental health specialists for consultation, either directly for patient care and/or to help the team respond to patient and family problems.

●Treat co-occurring mood, anxiety, or substance use disorders (SUDs) with targeted psychopharmacology and nonpharmacologic therapies following principles of symptom management and harm reduction.

Training to improve clinician communication skills — Several controlled trials have demonstrated the benefits of targeted training methods for palliative care clinicians. These approaches focus on improved communication skills regarding end-of-life care, recognition and management of difficult family emotions, improved methods of delivering bad news, and specific techniques to convey compassion [13-16]. Further discussions regarding clinician communication are found elsewhere. (See "Communication of prognosis in palliative care" and "Discussing serious news" and "Cultural aspects of palliative care".)

SPECIFIC CHALLENGING CLINICAL SCENARIOS

Personality disorders — Personality disorders are defined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth edition, Text Revision (DSM-5-TR) as enduring, stable, and severe patterns of inner experience and behavior that markedly deviate from the expectations of the individual's culture [17]. These characteristics are typically present from adolescence or young adulthood but become particularly problematic during periods of heightened stress, such as serious medical illness. Detailed descriptions for specific personality disorders are also listed elsewhere. (See "Overview of personality disorders".)

Recognizing personality disorders — Recognizing potentially challenging behaviors and personality disorders is important for several reasons: to initiate a plan for effective communication and treatment, to limit the risk of providing substandard care to the patient, and to establish realistic expectations for the health care provider.

Personality disorders may manifest in a variety of ways that often lead to challenging interpersonal interactions or problematic behaviors. We stress that all personality traits exist along a continuum and are not necessarily pathologic. Nonetheless, stressful situations, such as life-limiting illnesses, promote vulnerability or intensification of maladaptive personality characteristics that may not be clinically apparent when the patient or family member is healthy [6].

Personality disorders are conceptualized as having one of three specific characteristic clusters. These include odd or eccentric characteristics; dramatic, emotional, or erratic characteristics; and anxious or fearful characteristics. These are discussed further elsewhere. (See "Overview of personality disorders", section on 'Classification'.)

Individuals with personality disorders may display a pattern of problematic behaviors as they relate to medical care. As examples:

●Frequent demands for immediate care or specific treatment

●Unmerited or inappropriate expectations about treatment or care

●Frequent requests for reassurance or demands for unnecessary medical interventions

●Nonadherence with treatment or follow-up care

●Rejection or refusal of recommended treatments

●Polarization of opinions about providers as either "good" or "bad" (ie, "splitting")

●Hostility or aggression, including threats of assault or litigation

●Intimidation or devaluation of care providers

We encourage clinicians to be aware of the emotional reactions that the patient elicits (ie, countertransference) (see 'Other aspects of management' above). Patients who consistently engender strong negative emotional reactions in multiple providers may have personality traits that would benefit from the management strategies discussed in this topic.

Close attention to the patient's psychosocial history can additionally provide clues about underlying maladaptive personality traits. An absence of substantive social ties or estrangement from most family and friends [18], a history of trauma or abuse [19], and/or multiple episodes of incarceration [20] suggest that the patient may have or be at increased risk for having a personality disorder.

Management approach — Treatment of individuals with personality disorders in any setting is challenging. Minimal evidence consistently supports any specific treatment method over another. Individuals who struggle with trust, have a need for control, or are excessively impulsive may be among the most difficult patients to care for.

In addition to the guidelines outlined above (see 'General management strategies' above), we endorse the following approach to the management of patients with known or suspected personality disorders [21]:

●Ask patients to prioritize their agendas and focus on their most important concerns during meetings.

●Aim for clarity and consistency within the team regarding expectations and consequences. Regularly scheduled team meetings can facilitate this approach. In inpatient settings, it may be necessary for multiple providers to see the patient jointly. Proactive and frequent communication among treating team members (eg, the primary medical and nursing team members, as well as involved consultants, social workers, case managers, etc) can reduce miscommunication and frustration for all involved.

●Adjust expectations; patients with personality disorders will typically require additional time and resources. For example, clinicians should allot extra time (again, with clear limits) when caring for these patients in both inpatient and outpatient settings.

●Help diffuse tense interactions by validating the patient's distress.

●Identify strategies to increase empathy for the patient. Prior to or after frustrating clinical encounters with the patient, we encourage providers to concentrate on specific aspects of the patient's history or presentation that elicit compassion or at least sympathy. For example, a patient who is particularly anxious and demanding of certain accommodations may have experienced physical or sexual trauma. Patients with personality disorders can be frustrating, but their suffering is deserving of empathy. Efforts to understand the patient's life story may yield identification of areas of commonality that can facilitate empathy.

●Consider involvement of the patient relations group or the hospital ethics committee when the patient's behavior or the providers' responses lead to significant deviations in care or an inability to adhere to agreed-upon limitations.

●Be familiar with the basic principles of dialectical behavioral therapy (DBT), which may also help more effectively approach and respond to patients with behaviors suggestive of borderline and narcissistic personality disorders. While a review of DBT is beyond the scope of this chapter, further information on psychotherapeutic techniques for borderline personality disorder can be found elsewhere. (See "Borderline personality disorder: Psychotherapy".)

●Elicit feedback from colleagues on your communication skills.

●Monitor feelings of countertransference elicited by treatment of the patient (see 'Other aspects of management' above). Ensure you have mechanisms to process your own emotions related to the challenging interactions that might contribute to professional or personal growth.

Further discussion of interacting with individuals with a personality disorder is discussed elsewhere. (See "Overview of the therapeutic relationship in psychiatric practice" and "Approaches to the therapeutic relationship in patients with personality disorders".)

Substance use disorders — Substance use disorders (SUDs) represent a range of conditions resulting from the problematic use of 10 separate classes of substances (eg, alcohol, cannabinoids, opioids, benzodiazepines). SUDs may be classified as mild, moderate, or severe; addiction, which is not a specific diagnosis in the DSM-5, is usually used to describe severe and compulsive drug seeking despite negative consequences [22].

SUDs are associated with a wide variety of problematic behaviors in the health care setting, which can range from inappropriate use of prescribed medications and demands for controlled substances to dangerous and criminal behavior (table 2). Left untreated, SUDs worsen prognosis and adherence to care [23,24]. In addition to complicating pain and symptom management, SUDs perpetuate patients' suffering and can create conflict with family supports and health care providers. Optimal care of patients who struggle with addiction requires a multidisciplinary approach with behavioral and psychopharmacologic expertise. General management of SUDs are discussed elsewhere. (See "Management of acute pain in the patient chronically using opioids for non-cancer pain" and "Continuing care for addiction".)

Barriers to optimal care — Existing data suggest that many palliative care and hospice programs are inadequately prepared or resourced to assess or manage patients with aberrant behaviors or evidence of drug abuse [25,26]. Specific barriers include:

●Lack of knowledge – Despite the prevalence of SUDs, surveys of palliative care providers indicate that there is a need for better training in identifying and managing patients with addiction [27,28], and many hospitals and outpatient clinics do not have dedicated SUD clinical programs. A review of the United States Medical Licensing Step Examination revealed the inclusion of multiple pain and symptom management question items assessing knowledge concerning SUDs, indicating an awareness of the issue [29].

●Lack of standards for screening – There is no existing standard of care for screening and management of SUDs in palliative care. In ambulatory palliative care clinics, routine screening for SUDs among patients and family members is variable, with most providers reporting that screening occurs when the provider feels it is appropriate [30]. A survey of United States Medicare-certified hospices revealed that 68 percent included substance use in their psychosocial assessments, but these screening questions lacked standardization or detail [31].

●Lack of validated screening instruments – Most opioid risk screening instruments, such as the Screener and Opioid Assessment for Patients with Pain (SOAPP, SOAPP-Revised [SOAPP-R], or SOAPP-Short Form [SOAPP-SF]) or the Opioid Risk Tool (ORT), have not been validated for the palliative care population [32,33]. (See "Opioid use disorder: Epidemiology, clinical features, health consequences, screening, and assessment" and "Cancer pain management: General principles and risk management for patients receiving opioids", section on 'Risk assessment and management for patients receiving opioids'.)

●Discordant legal status of medical cannabis – Further complicating SUD assessment and management in palliative care is the discordant legal status of medical cannabis across state and federal governments paired with patients' increased use of both medical and recreational cannabis for symptom management [34]. (See "Medical use of cannabis and cannabinoids in adults".)

Management — In addition to the general management strategies discussed above (see 'General management strategies' above), we endorse the following approach for patients at risk for or suspected to have SUDs, particularly those who present for outpatient palliative care services:

At the beginning of treatment

●Identify a single prescriber for high-risk medications such as opioids, stimulants, and benzodiazepines.

●Conduct an opioid risk assessment with all ambulatory patients. The ORT [35] and SOAPP-R [36] are two publicly available options.

●Establish with the patient and family shared goals and expectations of pain and other symptom management (eg, "0 out of 10 pain" is rarely a realistic goal).

●Before dispensing medications, provide clear (verbal and written) expectations and limits regarding early refills, unsanctioned dose escalations, missed appointments, and lost prescriptions.

●For patients with moderate or severe SUDs, expect and plan for relapse. Prior to lapses in treatment adherence or return to substance use, identify what, if any, consequences will occur if patients do not comply with expectations.

During treatment

●For patients with chronic pain who show aberrant drug-related behavior, a brief behavioral intervention (close monitoring, monthly urine screens, cognitive behavioral counseling) might increase overall adherence with the care plan [37].

●We do not recommend systematic urine drug screening in most patients unless the provider has a clear plan for how to respond to aberrant toxicology testing.

●For at-risk patients, employ frequent clinic visits, and dispense prescriptions in one- to two-week intervals.

●Coprescription of naloxone for patients with elevated risk of opioid overdose: exposure to opioid doses ≥50 morphine milligram equivalents per day, concomitant use of benzodiazepines, and prior history of SUDs or overdose [38]. Naloxone distribution is linked to reduced rates of opioid-related fatal overdose [39]. Patient counseling and education about proper use should accompany prescription.

●At each visit, review patient data from state-sponsored prescription monitoring programs (where available).

●Maximize use of nonhabit-forming medications and nonpharmacologic treatments.

●Refer to addiction specialists if problems are severe and persistent.

●Consider transitioning selected patients with opioid addiction and pain disorder (ie, highly motivated and adherent) to buprenorphine, an office-based opioid maintenance treatment that is associated with a decreased risk of relapse in patients who are opioid dependent [40]. Buprenorphine, a schedule III agent, may now be prescribed in primary care and specialty settings by any prescriber who holds a standard Drug Enforcement Administration (DEA) license to prescribe schedule III drugs (see "Cancer pain management with opioids: Optimizing analgesia" and "Opioid use disorder: Pharmacologic management"). Methadone, a schedule II opioid, may effectively treat pain disorders. If used for the treatment of concomitant addiction (eg, medication-assisted therapy for opioid use disorders), however, its use is restricted to federally regulated opioid treatment programs.

Suicidality — Patients with suicidal ideation may elicit discomfort in palliative care clinicians, who may feel inadequately trained to evaluate and treat these patients [41-43]. Suicidality in seriously ill patients may take the form of passive thoughts of death, specific plans to end one's own life, or deliberate self-injurious behavior (eg, intentional overdosing with narcotics, attempted and completed suicides) (see "Suicidal ideation and behavior in adults"). Medical aid in dying is a distinct patient issue discussed separately. (See "Medical aid in dying: Ethical and legal issues".)

Suicidal ideation and behavior may occur in patients with cancer and other life-limiting illnesses:

●In a study conducted among 2217 patients with cancer in the United Kingdom, 29 percent had the DSM symptom "thoughts of death or suicide" and 9 percent had suicidal thoughts [44].

●The completed suicide rate in patients with cancer is twice the rate in the general population [45], and it is highest in the first few months after a cancer diagnosis [46,47].

●Adolescent and young adult patients with cancer appear to be at increased risk for suicidal ideation and completed suicides [48,49].

●Risk of suicidal behavior is significantly higher than in the general population for most medical illnesses [47,50].

Encouragingly, a 2018 Veterans Administration cancer registry study of patients with advanced lung cancer reported a decreased risk of death by suicide in patients who received palliative care [51].

Management approach — We ask patient directly about current or past suicidal thoughts or plans, and about their access to lethal means (eg, firearms, stockpiled medication). A suicidal statement is often an expression of distress, pain, fear, loss of control, or worry about becoming a burden to loved ones.

For acute suicidal threats we immediately refer the patient to a mental health professional for emergent assessment. If this is not available, we refer the patient to the emergency department. Examples of acute suicidal threats include intent with a plan, a specific plan with high lethality, or the inability of the patient to assure their safety. We no longer ask patients to "contract for safety" because there is little evidence that it works. Rather, we suggest that clinicians discuss a safety plan that specifies how patients can cope with recurrent suicidal urges in the future (figure 1).(See "Suicidal ideation and behavior in adults", section on 'Patient evaluation'.)

A survey of 93 young adults with advanced cancer revealed an association between having a strong patient-oncologist alliance and a lower risk of suicidal ideation [52]. This finding suggests that palliative care clinicians are well positioned to manage and potentially reduce the likelihood of suicidality in patients with advanced disease. Creation of a secure, consistent, nonjudgmental clinical relationship is likely to be an important element of prevention in this difficult circumstance.

Dangerous behavior/violence — A review of the growing problem of workplace violence for health care workers in the United States suggested that acts of violence toward health care providers are more common than generally appreciated [53-55]. To our knowledge, there are no systematic studies of violence directed at palliative care clinicians. In our experience, verbal threats by patients or family members are most commonly related to miscommunication, anxiety, the receipt of bad news, adverse medical outcomes, or requests for opioid and benzodiazepine prescriptions.

Additionally, palliative care scenarios associated with threats of violence or assault may include cases of altered mental status [56], for example:

●Neurocognitive disorders

•Dementia (and other major neurocognitive disorders)

•Delirium

●Substance intoxication

●Decompensated mental illness

Physical violence in the health care setting can be difficult to predict and prevent. Nonetheless, potential signs of impending physical violence can include [57]:

●Increased voice volume and harsh tone

●Threats of various types

●Erratic, impulsive, or agitated behavior

●Expressions of paranoia or other delusional thinking

Management approach — In addition to the general management strategies above, we are vigilant to use the following approaches in the treatment of these individuals. (See 'General management strategies' above.)

●Ensure adequate staffing and a safe clinical environment (eg, availability of additional personnel, if needed; arrangement of furniture in the interview room so that the clinician sits closest to the door).

●Communicate your respect for the patient while being firm, clear, and calm in your response to an escalating or agitated patient.

●Do not tolerate threats or verbal abuse as this may be associated with escalating behavior.

●Provide patients with clear expectations regarding unacceptable behavior with health care system staff.

●Consult mental health specialists for a safety evaluation when patients make threats or demonstrate escalating problematic behaviors.

●Implement a "behavioral response code" that involves hospital police or security.

●More specific recommendations on the management of violent patients are provided elsewhere. (See "Assessment and emergency management of the acutely agitated or violent adult".)

Patients who decline treatment recommendations — A challenge for palliative care providers occurs when a patient or family member ignores, resists, or refuses recommended care (table 3). In this section, we focus on interactions in which patients expressly communicate their resistance to health care providers' clinical recommendations. Further discussion with respect to patient adherence to care is a broader topic covered elsewhere. (See "Psychological factors affecting other medical conditions: Management" and "Psychological factors affecting other medical conditions: Clinical features, assessment, and diagnosis".)

Since palliative care patients are seriously ill and may be receiving medications that affect the central nervous system, the first priority is to determine if the patient has decision-making capacity. (See "Assessment of decision-making capacity in adults".)

Management approach — Patients who possess decision-making capacity are legally and ethically permitted to refuse medical care. An approach to assessment of decision-making capacity, modified from the Appelbaum framework [58], is outlined in the table (table 4) and addressed in detail elsewhere. (See "Assessment of decision-making capacity in adults" and "Legal aspects in palliative and end-of-life care in the United States".)

For those who lack decision-making capacity, medical care to restore capacity should be attempted whenever possible. When this is not possible, decisions should be made by the authorized surrogate decision maker. In general, compelled treatment over an incapacitated patient's objection could be considered for a one-time or short-term intervention (eg, life-saving surgery, or procedures to lessen pain, improve breathing, or alleviate a bowel obstruction) but should be avoided for repeated interventions that require a high degree of patient cooperation (eg, indefinite dialysis or chemotherapy for several weeks). Check state laws regarding the administration of standing antipsychotic medications to patients who lack capacity, as some states have distinct approaches in this situation. (See "Assessment of decision-making capacity in adults", section on 'What to do when a patient lacks capacity'.)

Family-specific issues — Life-limiting illness and death have a significant impact on family systems. Often, family members take on substantial caregiving responsibilities in chronic illness and at the end of life. These expectations may occur without adequate training or preparation and pose significant financial, mental, and physical health burdens [59-61] and can lead to social isolation. In modern health care, the proliferation of treatment options also means that families are asked to participate in complex medical decision making at the end of life. It is unsurprising that serious illness and death can create a high-stress environment for family members and highlight or renew difficult family dynamics. In particular, transitions of care when there is an acute decline in the patient's functioning can precipitate greater family distress [62]. In a United States qualitative study of 37 families of patients with advanced lung cancer, 65 percent of families reported conflict about the patient's care [63,64]. The psychological consequences of caregiver responsibilities and substitute decision making are substantial; in a 2001 study of 920 family caregivers of patients hospitalized in an intensive care unit, the prevalence of clinically significant anxiety and depression symptoms was 69 and 35 percent [65]. Issues related to surrogate decision making in the intensive care unit are discussed separately. (See "Palliative care: Issues in the intensive care unit in adults", section on 'Surrogate decision-makers'.)

Family conflict at the end of life can interfere with the provision of optimal patient care. There may be distortions in communication or understanding of prognosis and the anticipated benefits and risks of treatment [66]. Further, these conflicts can create delays in decision making or receipt of care, promote care that is discordant with the patient's goals, and increase caregiver distress, particularly when the patient has not previously specified their goals of care [67]. (See "Unipolar depression in adults: Family and couples therapy".)

Common sources of family conflict — Conflict can arise as reactivation or intensification of longstanding family conflict unrelated to the patient's illness or can be related to the medical events. Providers must be sensitive to the diverse experiences and backgrounds of patients and their families. Clear communication about end-of-life goals and preferences between the patient and family can reduce the likelihood of confusion or conflict.

Some common sources of conflict include:

●Level of family involvement – The perception that a family member is providing insufficient help or care, or actual limited engagement of the family in the patient's care [68].

●Disagreements about medical issues – Disagreement (between family members, the patient and family members, health care providers and family) regarding the nature of the patient's illness and prognosis, the patient's needs or preferences, the treatment, or the plan of care [69].

●Difficulties with decision making

•Multiple family members involved with clinical decision making. Family members may be at different stages of grieving (and grieving may be unacknowledged or unaddressed) leading to different perspectives on further treatment.

•Surrogate decision makers not using substituted judgement to guide the patient's care.

•Inaccurate assumptions (by the family or health care providers) about health care power of attorney and guardianship matters.

●Differing points of view

•Distrust of medical care, the health care system, or health care providers.

•Cultural and religious differences between the patient (or family) and the health care provider.

•Different grief trajectories, with some family members being more accepting and others less so of the approach of death or other potential negative outcomes.

We recommend initiating early and frequent family meetings to avoid or minimize conflict. When possible, the initial family meeting should focus on understanding the family system and individual members, rather than pressing to make specific decisions. Eliciting information about family understandings of the patient's illness is critical. Follow-up meetings can then focus more on consensus and shared decision making [70]. Below, we discuss several additional common scenarios. (See 'Conflict between the patient and family or among family members' below and 'Disagreements between family members and the treatment team' below and 'Family decision makers with questionable decision-making capacity' below and "Communication in the ICU: Holding a meeting with families and caregivers".)

Conflict between the patient and family or among family members — Conflicts within families that affect patient care are unique to each family and must be addressed on a case-by-case basis. When the patient is incapacitated, familial conflict about decision making can lead to prolongation of dying or provision of care discordant with the patient's wishes [71]. When conflict within families interferes with the patient's care, we encourage:

●Clarifying whether the patient possesses decision-making capacity.

●Exploring the patient's preferences regarding decision making and whether the patient prefers an individualized or family-based approach. Guidelines exist for addressing issues of cultural diversity at the end of life [72]. Further discussion regarding the cultural aspects of palliative care is found elsewhere. (See "Cultural aspects of palliative care".)

●Exploring differences in illness and prognostic understanding among family members and in the patient to elicit information about their understanding and acceptance of illness realities.

●Differentiating health care-related family conflict from broader family dynamics.

●Involving patient advocates in discussions when there is concern that the patient's autonomy or ability to openly communicate is compromised by family members.

Family decision making is a complex process involving both explicit discussions and implicit communication based on prior family interactions. To help clarify these dynamics, clinicians can ask families to discuss their previous medical decision-making experiences with respect to:

●Their specific roles in the family (for example, is there typically a single decision maker or a consensus-based approach?)

●Differences among family members in the grieving process (questions such as: "Can you tell me about your mom?" or "What would be hardest for you if your mom weren't here?") both facilitate the grieving process and can identify opportunities for further support and intervention.

●Family-held values (eg, patient comfort, honoring previously expressed wishes, faith-based priorities) and prior experiences with end-of-life care and death in the family.

●How the family copes with differences in opinions about major decisions

●Whether or how the absence of the patient's ability to directly contribute to decision making affects their previously established decision-making processes

Disagreements between family members and the treatment team — Conflicts between family members and health care providers are not uncommon, particularly when addressing emotionally laden topics, such as decisions about a critically ill family member. In a study of decisions to limit life-sustaining treatments in the medical intensive care unit, researchers identified disagreements between health care providers and family members over the treatment decision in 33 percent of the cases [4]. When disagreements between providers and family members do occur, we recommend the following considerations in addition to the steps outlined above [73,74] (see 'General management strategies' above):

●Recognize personal feelings of anger, fear, or frustration so that these emotions do not unduly influence communication with family members. Explore what drives those emotions to better attribute them to systems, beliefs, personal, or interpersonal factors. Talking about these feelings with a trusted colleagues or team member can be helpful.

●Identify the source of the conflict, whether it is due to true differences of opinion about the nature of the patient's illness or treatment, breakdowns in communication, personality or cultural differences, and/or unaddressed emotional issues [4].

●When discussing withdrawal of life-sustaining treatments, directly explore family members' feelings of grief, guilt, or remorse. For example, if a family member states, "I know my father would not want this, but I just can't let him go" or "I can't make a decision that results in his death," the clinician can respond with a reflective statement and further exploration: "I imagine it is extremely difficult to make a decision in this situation. Some families say they do not want to be responsible for a decision because it can be so hard. We see this as a shared decision, just as it would be if your father was able to have this conversation with us."

●Explore the relationship of the patient to the family members who are experiencing heightened distress to allow emotions, especially grief, to emerge (eg, "Tell me about your mom… what would you miss most about her if she does not survive?").

●Assess whether a premorbid history of family conflict exists.

●Utilize strategies common in bioethics mediation [75]; a step-wise approach to addressing conflict involving family members has been described [76].

Family decision makers with questionable decision-making capacity — When a patient is unable to make decisions about their health care, a designated surrogate, typically a family member, assumes authority and responsibility for the patient in the informed consent process. Further information on assessing decision-making capacity and on what to do when a patient lacks capacity is presented elsewhere. (See "Assessment of decision-making capacity in adults".)

The decision-making capacity of the surrogate may also be questionable, however, due to their own cognitive capacity, comorbid psychiatric illness or addiction, conflicts of interest, or inability to act using either the standards of substituted judgment or the best interests of the patient. The team may have concerns that the surrogate is making decisions based on their own personal values and preferences instead of the patient's [77]. In these scenarios, we suggest the following:

●Explore the surrogate's grief, which is a common factor in unrealistic expectations and demands for aggressive and nonbeneficial care. (See 'Disagreements between family members and the treatment team' above.)

●Involve the hospital ethics consultant or committee.

●Engage the surrogate decision maker in a multidisciplinary meeting with the team leader, key clinicians, the ethics consultant, and other potential surrogate decision makers.

●Educate the surrogate decision maker on their roles and expectations, including how substituted judgment differs from a "best interest" approach. (See "Legal aspects in palliative and end-of-life care in the United States".)

●If the ethics consultant/committee and the health care team believe that an alternative surrogate decision maker is needed, then involve risk management.

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

SUMMARY AND RECOMMENDATIONS

●Overview – Challenging interactions in the medical setting can be understood as interpersonal exchanges involving strong emotions such as anger, fear, despair, or humiliation. Associated behaviors include verbal outbursts, threats, destruction of property, or physical altercations. Patient characteristics, provider factors, and health care system issues can each contribute to challenging encounters in palliative care. (See 'Scope of the issue' above.)

●General management strategies

•We provide direct, clear, and consistent messaging while acknowledging limitations in treatment response and outcomes. (See 'Communication' above.)

•We respond to challenging interactions in a neutral, nonpejorative, and empathic manner. (See 'Communication' above.)

•We identify family members and potential surrogate decision makers as early as possible. (See 'Other aspects of management' above.)

•We are mindful of countertransference (conscious and unconscious feelings and thoughts about the patient). (See 'Other aspects of management' above.)

●Challenging clinical scenarios

•Patients with personality disorders – Stressful situations, such as life-limiting illness, promote intensification of maladaptive personality characteristics in patients with personality disorders. Recognizing potentially challenging behaviors and personality disorders is important in order to initiate a plan for effective treatment, limit the risk of providing substandard care to the patient, and establish realistic expectations for the patient and the health care provider. (See 'Personality disorders' above.)

•Patients with substance use disorders – For patients at risk for or suspected to have substance use disorders (SUDs), our approach includes identifying a single prescriber for high-risk medications (eg, opioids and benzodiazepines) and establishing clear goals and expectations regarding pain and other symptom management, limits regarding early refills, lost prescriptions, etc. (See 'Substance use disorders' above.)

•Suicidality – A suicidal statement is often an expression of distress, pain, fear, loss of control, or worry about becoming a burden to loved ones. For acute suicidal threats we immediately refer the patient to a mental health professional for emergent assessment. (See 'Suicidality' above.)

•Dangerous behavior – Acts of violence toward health care providers are more common than generally appreciated. General management strategies are described above (see 'Management approach' above). More specific recommendations on the management of violent patients are provided elsewhere. (See "Assessment and emergency management of the acutely agitated or violent adult".)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Eliza Park, MD, who contributed to earlier versions of this topic review.