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INTRODUCTION — Effective communication plays a major role in facilitating adaptation to the reality of living with a serious illness. Patients with serious life threatening illnesses often face challenging treatment choices, and high-quality discussions about what is important to them promote good decision-making and patient-centered care. Understanding the patient’s care goals in the context of a serious illness allows the clinician to align the care provided with what is most important to the patient. Discussing goals of care is a unique skill that should be separated conceptually from talking about prognosis or delivering serious news. While discussions about goals of care may involve some of the same principles as other difficult communication tasks, these discussions demand a different framework and often require that prognosis has already been discussed.
This topic will provide a practical approach to discussing goals of care in patients with a serious life threatening illness. Separate topics covering advance care planning and advance directives, communicating prognosis in palliative care, and discussing serious news are available. (See "Advance care planning and advance directives" and "Discussing serious news" and "Communication of prognosis in palliative care".)
DEFINING AND ESTABLISHING GOALS OF CARE — There are many possible treatment choices in medical care that impact both quantity of life and quality of life. Decision-making is informed by many factors including disease extent and prognosis. However, treatment choices, particularly those decisions that are made in the context of a serious, life-threatening illness, are also influenced by an individual's values and preferences, and this is reflected in the patient’s goals for medical care. Understanding an individual’s goals of care allows clinicians to align the care provided with what is most important to the patient and his or her family.
Sometimes the term "goals of care" is used in a very narrow sense, referring specifically to discussions about resuscitation preferences or “code status” among hospitalized patients. We suggest a broader definition that covers many steps in healthcare decision-making, including decisions about specific treatments, the intensity of care, and even planning for future care needs (advance care planning). While goals of care discussions most often occur in the context of a hospitalization, ideally these discussions should occur earlier in the disease trajectory (see 'Timing of the discussion' below). (See "Advance care planning and advance directives".)
Goals of care discussions should not occur in a vacuum. At their best (particularly when they occur early in the disease trajectory), they are exploratory, conversational, and longitudinal. At their worst (particularly when they occur during a life-threatening crisis), they can feel pressured, uninformed, transactional, or even adversarial. Processing of complex information is best done outside of a crisis situation. Ideally, these discussions should begin at the kitchen table, continue in the clinic, and evolve with time. Conceived in this way, discussions about goals of care should not be limited to goals of end of life care (ie, focusing on death and dying), but as much about how the patient wants to live.
Goals of care discussions are often framed around medical interventions, such as second-line chemotherapy, or hospitalization or whether or not to forgo cardiopulmonary resuscitation in a critical illness setting. In some cases, the patient’s primary goals are not medical, but are more personal, and focused on where they want to be, and how they want to live their lives in whatever time they have remaining. When contemplating the end of one’s life, most people think about things like completing tasks, mending relationships, atonement, and attending family events. Other health-related values that can guide how individuals conceptualize specific health care goals and medical decisions include self-sufficiency, life enjoyment, connectedness and legacy, balancing quality and length of life, and a desire to be engaged in care decisions . Goals of care discussions must consider and engage each patient’s life story, to ensure that decisions are being made within this important personal context.
Timing of the discussion — Goals of care discussions should occur early and often in the course of a life-threatening illness. Discussing goals of care should be part of every clinical encounter that involves a decision, especially in the setting of progressive life-threatening illness, and should usually occur separately from the delivery of serious news.
Physicians do not routinely initiate end of life discussions until late in the course of an illness [2,3]. One effect of this delay is that discussions of some end of life care options (such as hospice, which is associated with better outcomes and satisfaction for both patients, their caregivers and their families) occur very late in the disease trajectory. Specific barriers that prevent the timely referral of patients to hospice are discussed elsewhere. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Discussing hospice with patients and families'.)
Earlier discussions are generally preferable. Goals of care discussions are particularly important when one embarks upon a potentially life-threatening or risky treatment like hematopoietic cell transplantation, a new chemotherapy regimen, high-risk surgery, or placement of a left ventricular assist device, among many examples. Other times when a goals of care discussion might be appropriate is when an adult patient has an evidence-based indicator for limited life expectancy, such as certain cancer presentations that are known to be associated with a survival under six months , or non-cancer presentations with a similar life expectancy (for example, the combination of poor performance status and advanced age, end stage heart disease with two or more hospitalizations, patients older than age 75 with end stage renal disease [5,6]). Having discussions about prognosis and goals of care with patients, their caregivers, and their families at any of these “transition points” may facilitate advance care planning, improve satisfaction with end of life care, and reduce use of potentially inappropriate life sustaining therapies. (See "Survival estimates in advanced terminal cancer", section on 'Predictors of survival' and "Communication of prognosis in palliative care", section on 'The science of estimating prognosis'.)
For pediatric patients with potentially life-limiting illnesses, indicators of six month survival are less well studied. Goals of care discussions may be appropriate for pediatric patients who have conditions for which there is a potential for curative treatment but it may fail (eg, cancer, severe congenital heart disease, organ failure, awaiting organ transplantation); patients with chronic progressive conditions (eg, Duchenne muscular dystrophy, cystic fibrosis, severe immunodeficiencies); patients with nonprogressive irreversible conditions (eg, severe cerebral palsy, hypoxic brain injury, brain malformations); and patients with conditions for which there is no curative option (eg, trisomy 13 or 18, type II osteogenesis imperfecta, spinal muscular atrophy type I). In general, these are all conditions for which consultation with a palliative care specialist is appropriate. Having early discussions about prognosis and goals of care with patients and their caregivers (generally the parents) facilitates advance care planning, improves satisfaction with end of life care, and reduces use of potentially inappropriate life sustaining therapies. (See "Pediatric palliative care", section on 'Patient selection'.)
However, despite best intentions, goals of care discussions can become acutely necessary during the course of a life-threatening illness, especially when a difficult decision must be made quickly. When prior goals of care discussions have not occurred or where the clinician who is initiating the discussion does not have an established relationship with the patient (or the caregiver, such as a parent, if the patient is a child), discussions about goals can be even more difficult. In these settings, having a systematic approach or framework in which to approach the goals of care discussion before a crisis situation is thus particularly important .
Who should initiate the discussion — Ideally, goals of care discussions should take place within the context of a longitudinal clinical relationship. A primary care clinician who knows a patient well is best suited to initiate and conduct these discussions. Alternatively, a specialist physician who is following a patient longitudinally for a serious illness (eg, oncologist, cardiologist) may also be the appropriate person to do so.
However, amid the many time pressures and competing priorities of modern medical practice, these discussions often do not occur. In more acute situations, goals of care discussions may need to be initiated by clinicians who do not know the patient or family, such as a critical care clinician, the admitting hospitalist, or another specialist such as a palliative care physician. Without the context and trust of a long-term relationship, goals of care discussions can be particularly challenging. When the conversation appears that it will require considerable clinical skill to navigate successfully, involving a trained palliative care specialist is often helpful if one is available.
Why is this discussion important? — Good communication is a cornerstone of high-quality medical care. Good communication is linked with better patient outcomes and improved patient and family satisfaction with care [7-10]. Active discussion about an individual’s goals and preferences, specifically as they relate to end of life issues, is linked with reductions in hospital utilization and aggressiveness of care at end of life, increased use of hospice services, decreased family conflict, and a greater likelihood of dying in one’s preferred place of death. Studies in adults have shown that patients with life-limiting illness want their clinicians to initiate discussions about prognosis and goals of care, yet clinicians erroneously worry that doing so will induce anxiety [11-13]. Furthermore, having these conversations is difficult for clinicians [14-17] and they often fail to address key elements of a quality discussion about goals of care, even when discussing issues as value-laden as “code status” . As a result, patients with serious illness routinely receive treatments that are not aligned with their goals. (See "Discussing serious news", section on 'Patients’ preferences when receiving serious news' and "Discussing serious news", section on 'Impact of communicating serious news on patients and clinicians'.)
For relatively straightforward situations, goals may be obvious, implicit, and do not merit discussion. For example, a patient presenting with a routine but bothersome skin infection nearly always hopes for a diagnosis and cure. Without likely competing values or interests, the treating clinician may not need to explicitly ask about the patient's goals for treatment. Even if not stated outright, the goal is to treat the infection. In prescribing the treatment appropriate for this condition, the clinician is providing care congruent with the goal of curing it.
However, in cases where people might disagree on the preferred goal, and thus the appropriate treatment, one must explicitly explore and discuss goals of care. This is most often the case when facing a serious, life-threatening illness. Consider the example of an adult patient with advanced pancreatic cancer who has been through curative-intent surgery, adjuvant therapy, then suffered a recurrence which responded, albeit briefly, to combination chemotherapy. In this situation, additional palliative chemotherapy could yield important benefits such as life prolongation and symptom or quality-of-life improvement. However, more treatment might also yield undesirable effects, such treatment-induced fatigue, or other side effects, more time away from home, and potentially more time in the hospital. Reasonable patients may disagree on the best choice in such a situation. If one's goal is to live as long as possible, and one is willing to take significant risks to do so, then more anticancer therapy may be the best choice. If, on the other hand, one is focused mostly on comfort and quality of life, then second-line palliative chemotherapy may not best meet this goal. A frank discussion about the patient's goals, as well as the risks and benefits of these therapies, is necessary to assist the patient in making this important treatment decision. Without a goals-based discussion, it is difficult, if not impossible, to facilitate shared decision-making.
Goals of care discussions also help patients, their caregivers (eg, parents, if the patient is a child), and families come to terms with the realities of their illness and can help to facilitate alignment of patient and family values. When a child is facing a life-threatening condition, the child should be involved in his or her treatment decisions at a developmentally appropriate level. Suggestions for talking to children and adolescents about goals of care and end of life care are discussed separately. (See "Pediatric palliative care", section on 'Talking to children' and "Pediatric palliative care", section on 'Developing care plans based on goals' and "Pediatric palliative care", section on 'Medical decision-making and goals of care'.)
A SUGGESTED APPROACH TO DISCUSSING GOALS OF CARE — Clinicians should develop a systematic approach to the quality and timing about communications about serious illness goals. As when discussing any difficult topic, one should approach a goals of care discussion with care and sensitivity. Ensure that the setting is appropriate and that everyone the patient wants to be there is present. Clinicians should allot ample time, and seek to eliminate interruptions from phones and pagers.
Good communication skills are essential. A year 2017 guideline from the American Society of Clinical Oncology (ASCO) provides some recommendations about how to optimize communications about goals of care, treatment options, and prognosis (table 2) . These recommendations are applicable to a wide variety of non-cancer advanced terminal illnesses.
In addition, the decision-making capacity of the patient or surrogate should be addressed. (See "Advance care planning and advance directives", section on 'Assessing decision-making capacity'.)
Essential elements — Given that discussions about serious illness care goals are challenging, highly-stressful, and emotionally difficult for clinicians, use of a checklist (table 3) supports clinicians and assures completion of key components of the conversation. We prefer a stepwise approach using a “talking map” called REMAP. Other approaches are also available [6,20].
REMAP: A stepwise approach — We recommend a stepwise approach to discussing goals of care to help remind clinicians of the conversation's key elements . We offer a "talking map" called REMAP , an acronym that outlines a highly effective approach that includes five steps, as follows:
●Reframe – The current decision must be placed into the context of the clinical scenario. If one has not already done so, the clinician must first assess the patient’s and his or her caregiver’s (if the patient is a child) own perception and understanding of the clinical status and prognosis. One might ask:
•"What is your understanding of what the doctors have told you about your illness?"
Discussions about goals of care will differ in cases where patients and their caregivers fully understand their prognosis, compared with situations where they harbor sizeable misunderstandings (which is frequent). (See "Survival estimates in advanced terminal cancer", section on 'Accuracy of survival estimates' and "Discussing serious news", section on 'Impact of communicating serious news on patients and clinicians'.)
Once you are sure that you and the patient (and his or her caregiver, if the patient is a child) have a shared understanding, you can then make the true "reframing" statement such as:
•"Given this news, it seems like a good time to talk about what to do next" or
•"We're in a different place now. Is it okay if we talk more about next steps?" (Note the explicit request for permission, which helps to ensure that the patient feels ready to discuss these issues.)
●Expect emotion – Clinicians tend to focus on communicating medical facts, while ignoring or inadequately attending to affect, including feelings of loss, fear, and guilt. This focus may be harmful [23,24]. For most patients (and caregivers, if the patient is a child), talking about goals of care in the setting of serious illness is scary and sad. Clinicians should watch for emotional cues and attend to patients' emotional needs. When conflict about decisions arises between clinicians and patients or family, addressing the underlying emotion is much more likely to lead to resolution than attempting to simply improve understanding. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit", section on 'Communication and resolving conflict'.)
Naming and acknowledging emotions helps clinicians to explore them further. The NURSE acronym for dealing with strong emotions is depicted in the table (table 4). However, in our view, limiting the emotion management to only two skills (naming and acknowledging) is simpler to remember, and just as effective. One might say, for example:
•"I can see you're really concerned about this. Is it okay if we talk a bit more about what this means?"
•"I can't imagine what it's been like to hear all this news."
The judicious use of strategic silence can also help to elicit patients' feelings.
●Map out the future – When it is clear that the patient (and caregivers, if the patient is a child) is ready to move on to discussing treatment plans, the clinician should start by first identifying the patient's goals prior to recommending any treatments. Doing so allows one to tailor treatments toward what is most important to the patient. Useful phrases include:
•"Given what you know about your illness, what's most important to you?"
•"As you think about the future, what concerns you?"
It may also be useful to assess situations the patient (and/or caregiver, if the patient is a child) deems unacceptable.
•"As you think about the future, are there situations or things that you want to make sure you avoid?"
●Align with values – By aligning with the patient's/caregiver’s values, the clinician demonstrates that the patient and/or caregiver has been heard. This can be as simple as simply repeating back what the patient or caregiver has just said is important. For example:
•"I hear you saying that what's most important to you is…"
•"I understand that you want to make sure to avoid the following things …"
●Plan treatments that match values – Next, one should transition from the patient's/caregiver’s stated values to specific treatments or care plans that will help accomplish the agreed-upon goals. One might say:
•"It sounds like quality of life is the most important issue for you right now. Did I get that right?"
•"Now that I have a better understanding of what's important to you, let's talk a bit more about the options for treatment"
•"Here are some things we can do now…"
It is often helpful to give a recommendation, provided the patient and/or caregiver gives permission for this, and the recommendation flow only from the patient's goals. For example, one might say:
•"Would it be helpful for me to offer a recommendation?" then,
•"From what you've told me about what's most important to you, I recommend…"; "How does that sound to you?"
These discussions should conclude with an explicit expression of support to ensure the patient/caregiver feels supported and understands the plan for how to move forward.
Documenting goals of care — There is no standard for how to document a goals of care discussion, but we strongly advocate for explicitly documenting the discussion. Ideally, this should be in an easily searchable location or separate document, rather than being buried within a standard progress note. The note's contents should efficiently describe and reflect the patient's stated values, goals, and preferences, and the general content of the goals of care discussion. Sometimes it may include information about the patient’s (and caregiver’s, if the patient is a child) preferences regarding aggressive life-sustaining treatments, though these discussions are also important to document using official legal means when possible, depending on local laws (for example, advance directives, Physician Orders for Life-Sustaining Therapy [POLST] forms, etc.). (See "Advance care planning and advance directives", section on 'Specific documents for health care decision-making'.)
Starting too late — Perhaps the biggest pitfall in goals of care discussions is not having them at all, or starting the process too late. These discussions require more than just a single conversation, but they should be considered a process. (See 'Timing of the discussion' above.)
Expecting too much too soon — Sometimes clinicians expect goals of care discussions to quickly yield dramatic changes in the plan of care, but this is not always possible. These discussions are often a process, and sometimes the first discussion is just the beginning of a much longer decision-making journey.
Trying to deliver serious news (eg, prognosis) and goals in one sitting — After receiving bad news, many patients/caregivers will require time and space to process this information. Goals of care discussions are thus often best separated in time when possible, perhaps saved for the next clinic visit or the next hospital day. (See "Discussing serious news", section on 'Approaches to breaking serious news: existing models and key elements'.)
However, each patient and scenario is unique; it is important to consciously "read the room" for clues about what the patient/caregiver needs at that time. Sometimes, it is most helpful to ask and to use communication techniques like "naming" to promote discussion of what is needed. For example, one might say:
●"Many people would feel overwhelmed in a situation like this and need a bit more time to process this information before talking about goals and treatments. How do you feel about this?"
●"I know this is a lot of information and probably a shock. Would you like a bit of time to process this, or should we talk about some next steps, like choosing a treatment?"
Some patients/caregivers will want more information immediately, while others will do better with time and a return visit. Matching the communication style and decision-making pace to the individual patient's needs is critical.
Biasing the conversation — It is not unusual to hear the phrase "goals of care discussion" used somewhat pejoratively, as if to imply, "This patient should be ‘Do not resuscitate’ (DNR)!" This may occur amidst long or repeated hospital stays, in critical care settings where life support is not expected to change the outcome, or otherwise in the context of a patient with progressive, incurable illness. This reference may signal unresolved conflict or disagreement between the clinical team and the patient and/or family members about the current treatment. In this context, the conflict usually involves differences in expectations about the likelihood of a positive outcome or differences in opinion about what counts as "positive" or situations where therapy is deemed potentially inappropriate or futile. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit", section on 'Definitions'.)
When framed amidst such conflict, use of the phrase “discussing goals of care” might be interpreted as suggesting that the patient "doesn't get it," or that a family is "being difficult." We caution against this usage of the phrase "goals of care" and encourage clinicians to view a goals of care discussion as a critical component of all treatment decision-making amidst a serious illness, not just for cases where there is disagreement or conflict as to the appropriateness of the patient’s or family’s choices.
●An understanding of patients’ care goals in the context of a serious illness is an essential element of high quality care, permitting clinicians to align the care provided with what is most important to the patient. (See 'Defining and establishing goals of care' above.)
●Discussing "goals of care" is not a euphemism for situations where patients should get "comfort care," nor should it occur only in cases where there is conflict over appropriateness of desired care. (See 'Biasing the conversation' above.)
●Goals of care discussions should occur early and often. Early discussion about goals of care can help clinicians to better match recommended treatments to a patient's unique situation, thereby improving satisfaction and quality of care. Discussing goals of care should be part of every clinical encounter that involves a decision, especially in the setting of progressive life-threatening illness, and should usually occur separately from the delivery of serious news. (See 'Timing of the discussion' above and 'Trying to deliver serious news (eg, prognosis) and goals in one sitting' above.)
●Goals of care discussions should ideally take place in the context of a longstanding clinical relationship. (See 'Who should initiate the discussion' above.)
●When a child is facing a life-threatening condition, the child should be involved in his or her treatment decisions at a developmentally appropriate level. Suggestions for talking to children and adolescents and their caregivers (usually parents) about goals of care and end of life care are discussed separately. (See "Pediatric palliative care", section on 'Talking to children' and "Pediatric palliative care", section on 'Developing care plans based on goals' and "Pediatric palliative care", section on 'Medical decision-making and goals of care'.)
●Clinicians should develop a systematic approach to the quality and timing about communications about serious illness goals of care. We provide a stepwise approach to discussing goals of care, guided by the acronym "REMAP": Reframe, Expect emotion, Map out the future, Align with patient's goals, Plan treatments that match values. (See 'A suggested approach to discussing goals of care' above.)
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