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The initial interview in palliative care consultation

The initial interview in palliative care consultation
Authors:
Vicki A Jackson, MD, MPH
Juliet C Jacobsen, MD
Section Editor:
Robert M Arnold, MD
Deputy Editor:
Jane Givens, MD, MSCE
Literature review current through: Dec 2022. | This topic last updated: May 02, 2022.

INTRODUCTION — The initial interview is a critical moment in the relationship between the patient and the palliative care team. Good communication skills, while always important in clinical medicine, are especially indispensable in this context, where a life-threatening illness and associated fear, anxiety, sadness, and hope can make for a challenging clinician-patient relationship. When done expertly, the initial interview builds the rapport and trust needed for the therapeutic work of palliative care, which includes the exploration of a broad range of biopsychosocial and existential/spiritual issues.

This topic focuses on the key elements of the initial interview in subspecialty consultation for an adult. An overview of the domains of a comprehensive palliative care assessment and related topics in palliative care are covered elsewhere. (See "Overview of comprehensive patient assessment in palliative care" and "Benefits, services, and models of subspecialty palliative care" and "Primary palliative care" and "Communication of prognosis in palliative care" and "Communication in the ICU: Holding a meeting with families and caregivers" and "Discussing serious news" and "Approach to symptom assessment in palliative care" and "Assessment of decision-making capacity in adults".)

PREPARING FOR THE CONSULTATION

Understanding the reason for the consultation — A consultation ideally begins with a referral request and a conversation with the referring clinician. What is the reason for the consultation, and how does the referring clinician hope you can be helpful? Should you primarily provide one-time consultative advice to the referring clinician, or is it hoped that you will begin an ongoing role in the patient’s care?

If the initial consultation is a family meeting, it is vital to pre-meet with the clinicians who will be attending the meeting, as well to talk with any other clinical stakeholders, to explore each clinician’s perspective. (See "Communication in the ICU: Holding a meeting with families and caregivers", section on 'Meeting before the family meeting'.)

Some common reasons for consultation include:

Assessing and managing pain and other symptoms

Providing psychosocial and spiritual support for the patient and family facing an uncertain future

Clarifying illness understanding and prognosis

Clarifying goals, values, and priorities for current or future care

Providing guidance in decision-making

Assisting with disposition, including possible rehabilitation, nursing home, or hospice referral

Data gathering at this stage begins with a thorough review of the chart and a discussion with the clinical team or teams. The primary nurse, attending physician, specialty physician(s), house officers, and social worker can all potentially share their view of the clinical situation and what kind of help is needed. It is always important to understand and address the fundamental question(s) being posed by the primary referring clinician. If there is conflict among the treating teams or between the team and the patient or family, this should be understood and considered up front. Such basic questions can help to determine which members of the palliative care team should be present for the initial interview and what they should mainly focus on.

One of the challenges of the palliative care consultation is clarifying (and sometimes negotiating between) differing goals among medical providers, patient, and family. While medical providers may have focused reasons for the initial consultation request, the goals of the patient and family may be more overarching.

Early in illness, patient and family goals are often focused on [1,2]:

Understanding the illness and prognosis

Coping and living as well as possible

Attaining life goals, legacy, and meaning

Support of personal relationships

Finding normalcy

By contrast, towards the very end of life, patients and families often focus foremost on comfort. However, they also cite as important issues that extend beyond the usual biomedical goals of clinical care, such as [3-7]:

Ensuring that all medical options are considered in treating the disease

Avoiding inappropriate prolongation of dying

Relieving the burden on the family

Achieving a sense of control

Strengthening relationships with loved ones

Communicating with clinicians

Achieving a sense of completion

Hospital-based palliative care offers benefits for several person-centered outcomes, including patient health-related quality of life, symptom burden, and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death) [8]. (See "Psychosocial issues in advanced illness", section on 'Common issues for patients with advanced illness'.)

Awareness of effective communication — Seriously ill patients and their families report considerable unhappiness with the quality of communication with clinicians [9,10]. Clinicians often cut off patients’ stories within a few minutes of beginning the interview, and then dominate the agenda [11]. Although patients express a wide range of emotions during visits [12], clinicians may miss opportunities for empathy and trust building [13,14].

Some of the more common missed opportunities for effective communication include:

Avoidance of difficult topics – Clinicians regularly fail to accurately estimate patients’ desires for the amount and kind of information patients want to receive (underestimation is most prevalent) or patients’ preferred role in decision-making. Clinicians tend to collude with patients in avoiding upsetting topics, such as bad news, worsening prognosis, decisions about cardiopulmonary resuscitation (CPR), and worries about dying [15]. While some patients and families would prefer to leave psychologically threatening domains untouched, especially death and dying, others want more attention to end-of-life issues, including such concerns as funerals, the likely timing of death [16], and hospice [17]. (See "Overview of comprehensive patient assessment in palliative care", section on 'Illness understanding and care preferences' and "Discussing serious news", section on 'Patients’ preferences when receiving serious news'.)

Ineffective knowledge review – When discussing difficult topics, clinicians tend not to review, corroborate, or correct patients’ understanding of the information delivered [18,19]. Studies of clinician-patient communication in palliative care demonstrate poor patient knowledge after encounters with clinicians [20] and surprising brevity of discussions around therapeutic plans, even when the discussion concerns major decisions about CPR [21]. Clinicians believe they have explained more to patients than audiotape recordings demonstrate [22], while patients report that they have many questions that are unaddressed [23]. For many clinicians, the phase of the interview devoted to explaining treatment options is more of a monologue, with little checking of understanding or solicitation of questions. Such monologues are both inefficient and ineffective.

Lack of adequate advance care planning – Many patients facing serious illness are not prepared by their clinicians for medical decision-making. Discussions about such matters as CPR occur very late in the course of a terminal illness [24] or not at all [25-28]. In a 2006 study of seriously ill hospitalized patients and their family members, only one-third had discussed CPR with their clinicians and only 2 percent knew that their chance of survival following CPR was less than 10 percent [29]. Lack of understanding about prognosis is associated with preferences for more aggressive treatment at the end of life [30], while patients who receive more accurate information about the lack of efficacy of CPR choose less aggressive treatment [31]. Advance care planning discussions, if they occur at all, lack attention to such basic issues as patient values or prognosis [28]. (See "Advance care planning and advance directives".)

Essential proficiency in communication for palliative care practice can be learned [32-36] and objectively evaluated [37]. Enhanced communication, especially through family meetings, has been shown to have a positive impact on family satisfaction as well as subsequent resource utilization [38-43]. (See "Communication in the ICU: Holding a meeting with families and caregivers".)

Understanding prognostic awareness — Prognostic awareness refers to the patient’s understanding of their disease trajectory and life expectancy [19]. Emerging neuroscience research points to an ancient mechanism that shields patients from existential fear: the brain resists linking the self with death and categorizes death as an event that exclusively befalls others [44]. At diagnosis, patients may understand only that the illness will limit their life in unspecified ways. As they learn about their condition from their own research, their clinicians, or from their bodies, they can develop a more accurate understanding of how much time remains and how that time might be [45].

A study of patients with cancer by the psychiatrist Avery Weisman reveals how patients cope with prognostic information [46]. Unlike Kübler-Ross’s original schema of coping with illness, in which denial is the first of five stages of grief and acceptance the final stage [47], Weisman saw patients moving back and forth between denial and acceptance of impending death frequently, often within one conversation. This back-and-forth struggle to cope with prognostic information is represented as swinging on a pendulum between times of hope and times of worry and is a modulated, healthy, and adaptive approach to coping with difficulty. [19,48]. Swinging to times of hope gives patients a break from thinking about the prognosis. Swinging to times of worry enables planning and considering the most likely outcome of the illness. The pendulum illustrates that many patients consider mortality only briefly. Patients might even acknowledge this coping process [49]: “Sometimes I feel very hopeful and think positively about the future. Other times, I feel fearful and sad because I know how serious my illness is. I seem to go back and forth between those two feelings.”

When observing this back and forth, clinicians don’t need to question or correct any of the patient’s statements. Clinicians can simply observe the swinging, know that the patient is reflecting on what they have been told about the illness and prognosis, and note it as a healthy response.

Clinicians can also demonstrate responsiveness to the swinging dynamic. Clinicians can observe when a patient swings to times of worry and understand that such moments are often an invitation to a deeper discussion [50]. In addition, clinicians can align with patients’ hope, even unrealistic hope. For example, when a patient is feeling hopeful, perhaps after stable scan results, the clinician can hope with the patient, “It would be so great if this treatment could work for a really long time!” Expressions of hope by patients are not signs of denial or that the patient is unable to talk about the future. Expressions of hope by clinicians are not signs that the clinician is colluding with the patient in not acknowledging the illness. Rather, they are healthy efforts to be engaged with living [51]. When the clinician aligns with hopeful moments and invites discussion when the patient indicates that they have that capacity, the clinician demonstrates an understanding of the patient’s shifting prognostic awareness [52].

Allowing patients to express hopes and worries without judgment builds connection that the clinician and the patient will rely on throughout the course of the illness. Some patients may stick more to one side of the spectrum, whether being only hopeful or being overwhelmed with worry and sadness. The initial interview is a chance to simply observe how patients express prognostic awareness by swinging between hopes and worries.

Considering palliative care options

Primary palliative care — Before initiating a palliative care consult, consider whether the consult work can be completed as by the referring clinician as primary palliative care. Primary palliative care is basic symptom management or basic discussions about prognosis and goals of care provided by a clinician who is not a palliative care specialist [53]. Primary palliative care promotes continuity between the patient and referring clinician. It is also necessary because the rapid growth in demand for palliative care coupled with workforce shortages means that there are not enough specialist palliative care clinicians to meet current clinical needs [54]. (See "Primary palliative care".)

Palliative care teams have developed innovative ways to support the practice of primary palliative care, including telephone or in person coaching and office hours [55,56]. However, many informal advice services are not easily billable. Institutions are also training clinicians to provide primary palliative care with communication skills programs such as the Serious Illness Care Program [57] and Vital Talk [32]. (See "Discussing serious news", section on 'Approaches to breaking serious news: existing models and key elements'.)

Outpatient palliative care — Not all palliative care consultative work need be done in the hospital. In fact, many patients may be best served by outpatient palliative care (also called early palliative care or early integrated palliative care), which may be provided longitudinally beginning around the time of diagnosis of serious illness. When patients are stable, without active symptoms or communication needs, and outpatient palliative care is available, a consult may be deferred to the outpatient setting.

For patients with advanced heart failure, there is evidence that early palliative care can have a positive impact on pain intensity and interference [58] and on quality of life, particularly when patients able to attend a series of visits [59]. For patients with metastatic cancer, early palliative care improves quality of life, mood, symptom intensity, and possibly survival [60,61].

The clinical practice of outpatient palliative care is holistic and includes attention to building rapport, managing symptoms, promoting adaptive coping, developing prognostic awareness, advance care planning, facilitating treatment decisions, and guiding disposition. Its largest focus is on symptom management (75 percent of visits) and coping (64 percent of visits). Patients who have a higher proportion of visits that address coping experience improved quality of life and depression symptoms. Patients who have a higher proportion of visits address treatment decisions are less likely to initiate chemotherapy or be hospitalized in the 60 days before death. Patients who have a higher proportion of visits addressing advance care planning are more likely to use hospice [62].

There are several oncology models of early palliative care. It can be started around the time of diagnosis of metastatic cancer and consist of monthly visits integrated with usual oncology care [63,64]. However, because of the shortage of palliative care specialists, researchers are assessing alternative outpatient models such as systematically delaying referral by a few months after diagnosis of incurable cancer [65], offering group sessions [66], providing psychosocial care as a part of routine oncology care [67], or waiting for transition points such as a first hospital admission [68].

THE CONSULTATION

Introducing palliative care — From the moment the palliative care clinician enters the patient’s room, the clinician is focused on building a trusting, personal relationship. This relationship is defined by attention to both biomedical and psychosocial/spiritual issues, including the emotional experience of being ill. Because many patients are unfamiliar with palliative care, it is important to introduce yourself and explain the concept.

“I am a palliative care specialist and was asked by Dr. Smith to come see you. Would it be helpful if I explain what palliative care is?

Many patients worry about what it means to have a palliative care consultation or have difficulty defining it. Rather than asking patients what they already know, the clinician can ease patients’ stress by simply offering to explain. A brief, clear statement is recommended [69]:

“Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.”

“Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.”

Establishing a connection — Patients and families have varying levels of comfort with palliative care. Some welcome consultation and are quickly at ease, others appear nervous or reluctant to talk. During introductions, the palliative care clinician makes a quick assessment of the patient’s comfort. For patients who seem at ease, begin the consultation using an open-ended approach that invites exploration of the patient’s story. For those who appear nervous, or have obvious symptoms that need assessment and management, begin with a focused approach on symptoms. Focusing on symptoms with concrete questions helps contain a patient’s anxiety and build rapport [70]. Once the patient is more at ease or once symptoms are managed, the clinician can transition to an open-ended approach.

A clinician who assesses how a patient would best experience the initial interview and adjusts the approach accordingly demonstrates attunement, or empathic attunement. Attunement is defined as understanding and responding to another’s needs, both spoken and unspoken [71]. Attunement grows from empathy. While empathy entails being aware of and responsive to another’s feelings, attunement includes broader responsiveness to physical, cognitive, and relational needs, as well as emotional ones. An expert interview is initially guided by the needs of the patient and family and flows seamlessly into key topics of concern to the consultant [72].

With either an open-ended or focused approach, the goal of the clinician is to align with the patient and family. Specifically, aligning means letting the patient (and family) know through your behaviors that you respect their perspectives, hope to understand their situation both in biomedical and psychosocial arenas, acknowledge their emotions, and seek to make a personal connection.

An opened-ended approach

“I would like to begin by hearing from you about the story of your illness. Is that okay?”

Clinicians are often quick to interrupt, establish their own agenda for the interview, and ask directed questions [73], but doing this prematurely can undermine learning about the patient’s perspective and also interferes with the establishment of a relationship in which the patient feels that they are heard and attended to.

A key skill in open-ended interviewing is to let the patient and family tell their story by providing active listening cues such as:

Nonverbal encouragement, conveyed by attentive posture and head nodding

Verbal encouragement to elaborate or clarify (“Tell me more” or “What else?”)

Not interrupting

Use of silence

Repeating back or echoing what the patient says to show you are listening [74]

In addition to active listening, the clinician can encourage the patient to share their experience by acknowledging emotion. A communication tool for acknowledging emotion is the NURSE mnemonic (table 1). A separate topic discusses the impact of empathy on clinical outcomes. (See "Discussing serious news".)

Patients typically want to tell the story of their illness from the beginning through to the present. During this phase of the interview, obtain a clear picture of the origin, course, and current state of the illness from the patient/family perspective, with special attention paid to the following issues (see "Overview of comprehensive patient assessment in palliative care", section on 'Illness understanding and care preferences' and "Overview of spirituality in palliative care" and "Psychosocial issues in advanced illness", section on 'Mediators of coping' and "Psychosocial issues in advanced illness", section on 'Common issues for patients with advanced illness'):

Patient and family understanding of the illness and its trajectory

Important hopes

Biggest worries

Personal coping strategies

Existential and spiritual beliefs (see "Overview of comprehensive patient assessment in palliative care", section on 'Religious, spiritual, and existential (transcendent) issues')

“Unfinished business,” closure, and reconciliation [75]

Preferences for information-giving (eg, “Do you like to get all the details about your condition, or just big picture”) (see "Discussing serious news", section on 'Patients’ preferences when receiving serious news')

Preferences about decision-making (eg, “How do you like to make major decisions about your ongoing care? Do you want to make them mostly by yourself with the help of your clinician or family, or should we leave the decisions to your family or clinician?”)

Goals, values, and preferences for future care

Some sample questions to use in exploring each of these areas are provided (table 2). These questions will be tailored depending on the main purpose of the consultation as well as patient and family preferences.

After the open-ended part of the interview, the clinician can then fill in the details of the history using a focused approach, discussed next. The clinician should explicitly indicate the change in the interview process by stating something like, “Now I would like to fill in some of the medical details of your story so I can make sure I understand key elements that we have not yet covered.”

A comprehensive palliative care assessment also includes:

Medically important details

A social history (see "Overview of comprehensive patient assessment in palliative care", section on 'Social and economic needs of patients and caregivers')

Family history

Performance status (table 3)

A focused approach — When patients appear anxious about palliative care or have symptoms that need to be addressed, we begin with an approach focused on symptoms:

“An important part of my role is to help with your quality of life. I am going to start by asking about your symptoms from your illness.”

“I can see you are uncomfortable. I am going to ask you some questions about your nausea so that we can quickly make a plan to help you feel better.”

The symptom assessment includes exploration of bothersome symptoms, including their relationship to disease trajectory and treatment history, and a review of the common symptoms of advanced serious illness. (See "Approach to symptom assessment in palliative care".)

The clinician begins with a general question about symptoms, and then follows up with more specific questions.

“What are your most bothersome symptoms?”

“Can you tell me more about your pain?”

“Does it move or stay just in one place?”

“Can you tell me how severe it is on a scale from 0 to 10?”

Once clinicians have built rapport using the symptom assessment, they can transition to an open-ended approach as tolerated by patients. Some patients appreciate a comprehensive interview covering a range of topics. Others feel overwhelmed by the scope of the comprehensive palliative care interview and prefer a more focused approach. Additional history taking can happen as needed during the hospitalization or even in the outpatient setting.

Having the patient and family evaluated by other key members of the palliative care team (eg, depending on circumstances, this might include other clinicians, nurses, nurse practitioners, social workers, chaplains, pharmacists, the primary care team, and/or others) is recommended at times for added input around information gathering, support, and for clinical management. The routine interdisciplinary palliative care conference about each patient, which includes both clinicians who have had direct contact with the patient and family and those who can simply share their expertise, can also provide a rich review of the case and an opportunity for input on a wide variety of topics.

Key elements of the interview — Consultation means synthesizing what has been learned from the initial interview and the data collection process, including physical examination and review of laboratory values, in order to provide helpful clinical care. Very often, the reason for the consultation as communicated by the referring team differs from what the palliative care clinician thinks is needed. For example, a consultation may be requested for symptoms, but the clinician finds that the patient and family need a conversation about hospice. When this happens, the clinician may need to reprioritize how to use time most effectively.

The following sections offer pointers for key elements of the interview.

Assessing and managing pain and symptoms — When you decide that your primary role for the initial consultation is to assess and manage symptoms, it is helpful to signpost this clearly to the patient and family. “We have been talking a lot about your symptoms and ways that our team might help you feel better. This will be the focus of our work together.”

In addition, it can be helpful to explain how palliative care conceptualizes symptom management within a broader psycho-social framework. “In palliative care, we focus a lot on helping with patients’ symptoms. We also think it is important to understand who you are and how you are coping with this illness. We can talk more about that next time.”

Providing psychosocial and spiritual support for the patient and family facing an uncertain future — Providing psychosocial and spiritual support is a core component of initial consultation, regardless of the reason for consultation, and includes an attuned assessment of how to begin the consultation and skilled questioning to learn about the patient’s illness experience, prognostic awareness, emotions, and coping. Key questions cover coping strategies and existential beliefs (table 2) as well as the patient’s social history and supports. Attention should be paid to the coping needs of family, particularly children. (See "Preparing children and adolescents for the loss of a parent or guardian".)

Coping support often focuses on the dual aims of helping patients live as well as possible and prepare for end of life [48]. Clinicians often begin by acknowledging loss, ie, “I can’t imagine how challenging this has been.” After acknowledging the patient’s illness experience, the clinician can then gently ask about coping:

“How have you coped with difficult situations in the past?”

“How have you coped with this illness? What have you been doing to get through these tough times?”

“What does it mean for you to live well with this illness?”

When the patient or family is anticipated to have ongoing complex palliative care needs, the team should consider outpatient palliative care for longitudinal support [62]. The outpatient setting is an ideal place for clinicians to reinforce patients’ existing coping skills and teach new ones (table 4).

When the primary role of the palliative care team is to provide psychosocial or spiritual support, it can be helpful to involve team members with this specific expertise, such as the social worker or chaplain. When possible, the interprofessional team should plan to see the patient and family together, so that the patient and family are not asked to repeat their story over and over again. (See "Overview of spirituality in palliative care" and "Overview of anxiety in palliative care" and "Assessment and management of depression in palliative care" and "Challenging interactions with patients and families in palliative care" and "Overview of psychotherapies" and "Overview of comprehensive patient assessment in palliative care", section on 'Maladaptive coping'.)

Clarifying illness understanding and prognosis — A key task in palliative care practice is educating the patient and family about the illness and prognosis. Information sharing should be clear, simple, and jargon-free, and it should build as much as possible on the patient and family’s current understanding. “Can you tell me what the oncologist has told you already about your cancer and what lies ahead?” It should also allow for and encourage further patient and family questions. (See "Discussing serious news".)

Clinicians tend to give explanations that are overly long monologues loaded with technical details and difficult concepts that can be lost on patients, especially when patients are anxious and overwhelmed. In many clinical encounters, clinicians give information without checking for understanding or continued patient engagement. A better strategy is to provide information succinctly and in small amounts, pausing to let the patient guide you to areas that need elaboration.

“Ask-tell-ask” is a mnemonic for sharing information about the illness and prognosis. The clinician begins by “asking” patients about their current understanding of an issue. The clinician then “tells” by crafting an explanation that is keyed to patients level of knowledge and information preferences. Finally, the clinician “asks” the patient if they understand. “What is your understanding now about your condition?” or “We have had a long discussion. Can you tell me what you understand now about the value of a feeding tube?” (table 5) [76].

Ask-tell-ask can be used repeatedly to prevent a conversation from becoming a monologue and to ensure continued patient and family engagement [76]. If the patient says something that the clinician doesn’t fully understand, the clinician can ask for clarification (“Can you tell me more about…”) and then listen carefully and clarify until understanding is achieved. If the new information is emotionally unsettling to the patient, the clinician may need to shift the interview back and forth between emotional management skills (table 2) and the ask-tell-ask process.

“Telling” is the process of talking about a wide variety of information that may range from small details about the illness to life-changing information such as the prognosis. Discussing prognostic information is central to supporting patients and families to make informed medical decisions [77] (see "Communication of prognosis in palliative care" and "Survival estimates in advanced terminal cancer"). Without at least a rough understanding of their prognosis with and without further medical treatment, patients cannot make good choices about goals and methods for their care.

Patient and family education about prognosis may be difficult and requires a balance between truthfulness and maintaining hope. An approach to help patients and families explore both sides of this equation is pairing hope and worry [50]. For example, the clinician might say, “I am hoping that you have a good long run with this chemotherapy and I am worried that time may be as short as a few years.” Or, “Let’s hope for the best and also simultaneously prepare for the worst” [78]. Serious or difficult news may be optimally delivered in the context of a family meeting, or at least with trusted family members present for an added “set of ears” as well as for added emotional support. Models for discussing serious news are provided in the table and discussed elsewhere (table 6). (See "Discussing serious news", section on 'Approaches to breaking serious news: existing models and key elements' and "Communication of prognosis in palliative care", section on 'How to discuss prognosis' and "Communication in the ICU: Holding a meeting with families and caregivers".)

In some circumstances, part of the palliative care clinician’s task is to introduce words such as “death” or “dying” into the dialogue with the patient and family, grounding the conversation in the most likely outcome of the illness and, ideally, detoxifying the words to the extent that the imminent loss can become a potential topic of family discussion. When patient understanding or hopes seem quite unrealistic, it can be useful to employ “wish statements” to reframe potentially unrealistic hopes as “wishes” [79]:

“I wish that were possible”

“I wish that I had better news to share”

“I wish medicine was more powerful than it is”

“I wish we had better treatments for your disease”

Clarifying goals, values, and priorities — Patients with a serious life-threatening illness often face challenging treatment choices. Decision-making can be supported by high-quality discussions about patients’ most important goals and values. Understanding and clarifying these priorities is a unique skill that should be separated conceptually from talking about prognosis or discussing serious (bad) news. While discussions to clarify priorities may involve some of the same principles as other difficult communication tasks, they demand a different framework (table 6). (See "Discussing goals of care".)

Providing guidance in decision-making — When patients and families are faced with difficult management decisions, palliative care clinicians may be consulted to provide guidance in decision-making. It can be tempting to simply and clearly present the major pros and cons of various alternative strategies without influencing choices in one direction or another. This well-meaning approach aims to involve the patient/family in the decision-making process and to avoid an appearance of paternalism on the part of the clinician. However, it leaves patients without our expertise and guidance [80].

When the patient and family share a common understanding with the clinician about the clinical situation and the patient’s goals, values, and preferences, the clinician should offer a recommendation. A recommendation unburdens patients and families from the stress of medical decision-making by offering medical management consonant with the patient’s wishes in light of their clinical condition [81,82]. Likewise, when the medical professional has a strong view of the best path under the circumstances, patients and families should not be deprived of the clinician’s expert recommendations because of false concerns about interfering with patient autonomy [83,84].

Recommendations can be initially posed as a question such as, “Given what I know about your medical condition and about you as a person, would you like to hear what I would recommend?” This approach is contrasted with asking the patient and/or family, “What do you think we should do?” which places the burden of a potentially life-or-death decision fully on them without the clinician’s guidance.

Sample recommendations might include:

“Now that we have thoroughly discussed the situation and your wishes, I recommend that we get you home with help from hospice.”

“Given your desire to try anything that might help, I think it is reasonable to enroll in this experimental protocol. It has a small chance of the treatment helping and is not overtly toxic. At the same time, I think you should do some preparation in case this treatment does not help.”

“From what you have told me about your mother’s wishes, even though she cannot express them now, I think the loving and ethical thing to do is to allow her to die peacefully by removing the ventilator.”

Of course, patients and families may disagree with a clinician’s recommendations, but that should expand the conversation about their specific priorities, which might reveal their reasons for choosing a different path. The clinician should search for common ground with the patient and family that integrates the patient’s priorities in light of the realities posed by the disease.

The principle of patient autonomy and other ethical issues that arise in the palliative care setting are discussed in more detail elsewhere. (See "Ethical issues in palliative care".)

An important point to recognize throughout the interview, and especially in the recommendation phase, is that a focus on palliative care is not “giving up” and does not exclude the simultaneous provision of the full range of other disease-directed treatment modalities. At the same time, the clinician should recommend against treatments that have little or no chance of providing benefit and are very likely to cause harm. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit" and "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults".)

If patient requests for treatment are very challenging to respond to (eg, requests for near-futile medical treatment or requests for active assistance in dying), the multidisciplinary team meeting is an excellent setting for clinicians to begin to explore how to evaluate and potentially respond to such requests while receiving support from colleagues. A formal ethics consultation may also be helpful in challenging cases. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit" and "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults" and "Physician-assisted dying".)

Based upon a mutual understanding of the medical situation and the patient’s values and goals, the clinician can also make recommendations on how to approach some of the challenges that may quite predictably occur down the road [85].

“Given your clinical situation, I want to advise that in my opinion attempting to perform CPR in the case that your heart has stopped would not help you. It won’t bring you back to an acceptable state of health or a meaningful existence, and it may put your family in the awful situation of having to remove you from a respirator. I strongly advise against it in your situation, and I would like to enter a medical order not to attempt this procedure.”

Such conversations may lead to preparing a formal advance care directive or Medical Orders about Life-Sustaining Therapies (MOLST) form to capture patient preferences about cardiopulmonary resuscitation (CPR), mechanical ventilation, comfort care, or other invasive procedures (eg, dialysis, artificial hydration and nutrition) as well as transfer to home, hospice, or other medical facilities. (See "Advance care planning and advance directives" and "Palliative care: The last hours and days of life", section on 'Assessing end-of-life expectations and preferences' and "Kidney palliative care: Withdrawal of dialysis" and "Stopping nutrition and hydration at the end of life" and "Assessment of decision-making capacity in adults".)

Assisting with disposition, including possible rehabilitation, nursing home, or hospice referral — A final part of palliative care practice is understanding disposition options and being willing to provide guidance to the referring team or case manager, as well as the patient and family.

“I understand that you want to be at home, and I am wondering if you would want to stay at home as long as you were reasonably comfortable and secure there, perhaps even die there. Hospice can be very helpful with such a plan. Would you be willing to learn more about what hospice could provide for you at home?”

To help guide end-of-life disposition decisions, palliative care clinicians should be familiar with:

Criteria for enrollment in the Medicare hospice benefit, including the General Inpatient (GIP) benefit (see "Hospice: Philosophy of care and appropriate utilization in the United States") and an awareness that hospice benefits of private insurance carriers may vary.

Local availability of GIP and residential hospice houses, long-term acute care (LTAC) hospitals, and nursing homes with experience providing high-quality end-of-life care.

Local home hospice capabilities including each agencies comfort with IV medications and palliative treatments such as radiation, Pleurx drainage, or transfusions.

Informal caregivers’ availability and willingness to care for the patient at home [86].

The feasibility of a home discharge including an assessment of space, home supports such as rails, and barriers such as stairs or limited bathrooms.

Communicating with the care team — The palliative care consultant must communicate with the referring clinician and care team about their encounter with the patient and family. The consultant should discuss the referring team’s goals for the consultation, as well as the additional needs identified by the consultant. In addition to a formal consultation note, it is important to talk directly in person or by phone with the responsible clinician about any recommendations. This task may sometimes involve dealing with conflict among providers and negotiating solutions.

Documenting the visit — A standardized palliative care consultation note template ensures systematic collection of symptom and psychosocial data (table 7). (Standardized consultation notes are especially important if one works in a teaching hospital where trainees have variable experience with palliative care.) There is growing evidence that a comprehensive palliative care evaluation lessens symptoms and improves quality of life [87].

Some tools and examples for documentation are available in separate topic reviews on symptom assessment in palliative care, spirituality, and advance directives. (See "Overview of comprehensive patient assessment in palliative care" and "Approach to symptom assessment in palliative care" and "Ethical issues in palliative care" and "Overview of spirituality in palliative care", section on 'Integrating spirituality into palliative care'.)

Arranging follow-up — Non-abandonment is a key ethical principle in both palliative and end-of-life care [88]. Patients and families are facing regular losses and the clinician-patient relationship should not occasion another loss. One of the most important outcomes of a palliative care consultation in the hospital is to make sure that there is a central clinician decision-maker both in the hospital and upon discharge.

The consulting palliative care clinician should make clear what kind of follow-up will be provided and who among the many treating individual’s teams will be both available and responsible for care decisions when the patient leaves the hospital. Who will be the “quarterback” to help make medical decisions and to assure coordination of care? It might be the main treating specialist, the primary care clinician, or the palliative care specialist, but it is important to be very clear about who it will be and to make sure that a qualified person or well-coordinated team is willing to take on this task. Additionally, there is a formal requirement to identify a primary treating clinician if the patient is transitioning to hospice. (See "Hospice: Philosophy of care and appropriate utilization in the United States" and "Palliative care and hospice outside of the United States".)

SUMMARY AND RECOMMENDATIONS

Purpose of the initial interview – The initial clinical interview in palliative care functions not only to gather key biomedical and psychosocial/spiritual data but also to develop an intimate, trusting clinician-patient relationship that is itself therapeutic. (See 'Introduction' above.)

Preparation – Preparing for the initial interview involves knowing the reason for the consultation and understanding the importance of effective communication and patient prognostic awareness. (See 'Preparing for the consultation' above.)

Effective communication – Seriously ill patients and their families report considerable unhappiness with the quality of communication with clinicians, who miss many opportunities for eliciting and responding empathically to patient emotions. Clinicians also tend to avoid discussing troubling topics, perhaps colluding with the patient and family, who also may prefer to circumvent such matters. (See 'Awareness of effective communication' above.)

Prognostic awareness – Understanding patients’ prognostic awareness and allowing them to express hopes and worries without judgement builds connection that the clinician and patient will rely on throughout the illness. (See 'Understanding prognostic awareness' above.)

Introducing palliative care – Begin the interview by introducing the concept of palliative care and establishing a connection (see 'Introducing palliative care' above and 'Establishing a connection' above). The clinician may choose an open-ended or focused approach. (See 'An opened-ended approach' above and 'A focused approach' above.)

Key elements of the interview – Key areas for exploration include symptoms, the patient’s understanding of the illness and prognosis, hopes and concerns, attitudes about the acceptability of diminished functional status, and preferences for the use of “aggressive” life-sustaining care.

Managing symptoms – Often, the primary role for the initial consultation is to assess and manage symptoms palliative care conceptualizes symptom management within a broader psycho-social framework. (See 'Assessing and managing pain and symptoms' above.)

Providing psychosocial and spiritual support – This is an important component of any palliative care consult. (See 'Providing psychosocial and spiritual support for the patient and family facing an uncertain future' above.)

Clarifying illness understanding – A key task in palliative care practice is educating the patient and family about the illness and prognosis. Information sharing should be clear, simple, and jargon-free, and it should build as much as possible on the patient and family’s current understanding. (See 'Clarifying illness understanding and prognosis' above.)

Providing guidance in decision-making – Once the values, goals, and preferences of a well-informed patient are understood, the clinician may be able to make a recommendation for further medical management including disposition options. (See 'Providing guidance in decision-making' above and 'Assisting with disposition, including possible rehabilitation, nursing home, or hospice referral' above.)

After the consultation – Documentation of the visit, communicating with the primary team, and arranging for follow-up are essential components of the consultation process. (See 'Documenting the visit' above and 'Communicating with the care team' above and 'Arranging follow-up' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Timothy Quill, MD, who contributed to an earlier version of this topic review.

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