- Email: [email protected]
Addressing Prognosis in Serious Illness
A d d re s s i n g P ro g n o s i s i n Serious Illness Julia Ragland,
MD
a,
*, Kosha Thakore,
MD
b
, Wendy G. Anderson,
c,d MD, MS
KEYWORDS Prognosis Serious illness Shared decision making Communication Uncertainty Goals of care
HOSPITAL MEDICINE CLINICS CHECKLIST
1. Prognostic awareness in serious illness (e.g., advanced congestive heart failure, advanced dementia, advanced cancer) provides the foundation for: a. Informed decision making b. Determining realistic goals of care c. Providing patient-centered care 2. Many patients with serious illness are unaware of their prognosis and likely outcomes of treatments, yet many want this information. 3. Hospitalists play a key role in helping hospitalized patients understand prognosis and developing realistic goals of care in the face of serious illness. 4. A “no” answer to the “surprise question” (“Would you be surprised if this patient died in the next year?”) helps to identify patients with serious illness who are at CONTINUED
Disclosure: None of the authors have commercial or financial conflicts of interest or any relevant funding sources. a Pain and Palliative Care Service, Newton-Wellesley Hospital, Tufts University School of Medicine, 2014 Washington Street, Ellison Building 2nd Floor, Newton, MA 02462, USA; b Pain and Palliative Care Service, Newton-Wellesley Hospital, Tufts University School of Medicine, 2014 Washington Street, Ellison Building 2nd Floor, 2014 Washington Street, Newton, MA 02462, USA; c Palliative Care Program, Division of Hospital Medicine, Department of Medicine, University of California San Francisco Medical Center, University of California San Francisco School of Medicine, UC Hall Building, 533 Parnassus Avenue, Room U-256, Box 0131, San Francisco, CA 94143-0131, USA; d Department of Physiological Nursing, University of California San Francisco School of Nursing, UC Hall Building, 533 Parnassus Avenue, Room U-256, Box 0131, San Francisco, CA 94143-0131, USA * Corresponding author. E-mail address: [email protected] Hosp Med Clin 6 (2017) 359–373 http://dx.doi.org/10.1016/j.ehmc.2017.04.006 2211-5943/17/ª 2017 Elsevier Inc. All rights reserved.
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CONTINUED
increased risk of death in the next year. Hospitalists should offer these patients information on prognosis. 5. Key elements for prognosis discussions in serious illness include the following: a. Prepare for the discussion b. Assess what the patient knows and what they want to know c. Anticipate ambivalence d. Provide information about prognosis that the patient or surrogate requests in a manner that is direct, honest and jargon free e. Acknowledge uncertainty f. Acknowledge emotions g. Check for understanding—ask what the patient is taking home from the discussion h. Wrap up with concrete next steps 6. High-quality documentation and handoffs by hospitalists about prognosis and goals of care discussions helps ensure that end-of-life care is aligned with patients’ values and goals.
DEFINITIONS
What is prognostication? Prognostication is a prediction of the future course of a patient’s illness that is based on medical knowledge and experience. Prognosis includes estimates of survival, but also includes assessment of disease progression, relief of symptoms or functional outcomes. The 2 main components of prognostication are formulation (‘foreseeing’) and communication (‘foretelling’).1 What is serious illness? Discussion of prognosis is most important for patients who have a serious illness. To identify patients who would benefit from palliative care, including discussion of prognosis, palliative care researchers and clinicians developed the following working definition: A serious illness is a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress.2 Common serious illnesses encountered in the hospital setting include advanced congestive heart failure, advanced dementia, end-stage liver disease, advanced cancer, advanced chronic obstructive pulmonary disease, end-stage renal disease, multiorgan system failure, frailty, and multiple comorbid illnesses. Because providers often struggle with uncertainty in predicting whether a patient will die within a certain period, the “surprise question” (“Would you be surprised if this patient died in the next year?”) is clinically useful in identifying patients at increased risk of dying who should be screened for palliative care needs, including discussion of prognosis.3–6 If the provider would not be surprised by the patient’s death in a year, prognostic discussion should be offered to the patient or family.
Addressing Prognosis in Serious Illness
PROGNOSTICATION IN SERIOUS ILLNESS
Why should hospitalists discuss prognosis in serious illness? Prognosis is a key element of communication in serious illness and serves as a foundation for determining realistic goals of care and a treatment plan that will help to achieve these goals (Fig. 1). Prognostic awareness changes decisions made by seriously ill patients and is an essential component of informed decision making. Studies show that patients and health care proxies are less likely to choose invasive, lifeextending treatments such as cardiopulmonary resuscitation (CPR),7,8 chemotherapy,9 and other burdensome interventions10 when they are aware that a condition is terminal and life expectancy is measured in months, rather than years. Prognostic awareness has particular importance near end of life because it provides the foundation for discussing realistic goals of care and helps patients and families prepare for dying.11 Additionally, most patients and families report that they want prognostic information, although many do not ask. Table 1 outlines how discussing prognosis has benefits for patients’ quality of life, caregiver outcomes, clinician–patient relationships, and costs of care.12–19 How well-informed are seriously ill patients? Unfortunately, many patients and families facing serious illness have a limited understanding about prognosis. Studies evaluating patients or caregivers of patients with end-stage heart failure, metastatic lung and colorectal cancer, and advanced dementia indicate a majority is unaware that the condition is terminal or that treatment is not curative (Table 2).10,20,21 A majority of patients and caregivers also have unrealistic expectations about the outcomes of CPR. Hospitalists routinely ask patients about their preferences for the use, or withholding, of CPR; however, the lack of prognostic awareness suggests that decision making about CPR is unlikely to be fully informed. In one study which surveyed patients aged 70 years or older, 81% of respondents believed they had a greater than 50% chance of surviving CPR and leaving the hospital and nearly one-quarter believed they had a greater than 90% chance of survival.22 Data support that the likelihood of surviving CPR to hospital discharge is far lower (<20% in most studies). Because hospitalists are responsible for engaging in shared decision making with seriously ill hospitalized patients, it is important for the hospitalist to be able to assess patient and family understanding of prognosis as well as the risks and benefits of proposed treatment options, including CPR, to ensure that their patients are truly informed and patient autonomy is supported.
Fig. 1. Elements of ideal communication in serious illness.
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Table 1 Benefits of discussions about prognosis and goals Outcome
Study Findings
Clinician–patient relationship12,13
Hope restored and clinician–patient relationship strengthened when prognosis discussed, even if poor prognosis
Caregiver outcomes14,15
Missed opportunity to prepare for end of life if false hope provided or prognosis not discussed, which was deemed unacceptable to surrogates Long-lasting adverse outcomes for surrogates if prognosis not discussed: stress, guilt, and doubt about decision making
Anxiety and depression16
Terminal cancer patients had less anxiety and depression after prognosis discussed with provider
QOL13,17,18
Patients informed of poor prognosis: less likely to have ICU stay or inhospital death (markers of poor QOL at EOL). More likely to use hospice services (associated with improved QOL at EOL)
Cost of care19
Discussing prognosis associated with 36% reduction in cost of care at EOL
Abbreviations: EOL, end of life; ICU, intensive care unit; QOL, quality of life. Data from Refs.12–19
What kind of information do patients and families want? The majority of patients desire information about prognosis. Approximately 80% of cancer patients and 55% to 65% of frail elders indicate they want information on prognosis.23–27 It is also common for patients to be ambivalent or inconsistent in their desire for information; therefore, the first step in sharing prognosis is asking how much information is wanted. Studies show that patients prefer realism and some patients find that honest, compassionate delivery of bad news to be hope giving.28,29 Conversely, the use of euphemisms or avoiding prognosis discussions and only reviewing treatment options contribute to patients feeling less hopeful or hopeless.23 It is important to note that hope, for seriously ill patients, is not always centered on cure or life prolongation. Other common hopes include30,31: Minimizing pain and symptoms Getting financial affairs in order Being at peace with God
Table 2 Prognostic awareness among seriously ill patients and their caregivers Condition
Prognostic Awareness
Advanced congestive heart failure (median survival 8 mo)20
Two-thirds of caregivers are unaware condition is terminal and believed patient would improve over time
Stage IV lung and colorectal cancer (incurable)21
69% patients with lung cancer, and 81% patients with colorectal cancer thought chemotherapy was curative
Advanced dementia10
Only 18% of health care proxies received information about prognosis 74% of caregivers were unaware that prognosis was <6 mo among patients who died
Data from Refs.10,20,21
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Minimizing burden on family Preparing for dying Feeling that one’s life is complete Mending relationships Having a trusting relationship with health care providers who treat them as a whole person
What is the hospitalist’s role in informing seriously ill patients about prognosis? Although many hospitalists believe that outpatient providers should be primarily responsible for discussions about prognosis, goals of care, and life-sustaining treatments, in most cases there needs to be shared ownership among multiple members of the healthcare team, including primary care providers, specialists, and hospitalists. This is due to a number of factors, including the following. Developing prognostic awareness is a process that evolves over time and often requires more than one conversation with providers. Patients and families may be better able to accept the realities of a poor prognosis when they are acutely ill and hospitalized. Hospitalists can provide an impartial view of the clinical situation and prognosis. Studies have shown that physicians with a longstanding relationship with a patient are less accurate in prognostication.32,33 Support is readily available in the hospital, such as social work, spiritual care, and consultants, including palliative care specialists, if available. Many serious illnesses such as congestive heart failure and chronic obstructive pulmonary disease result in numerous hospitalizations toward the end of life, rendering an outpatient visit to discuss prognosis and goals logistically difficult or impossible. As our population ages, the supply of subspecialty palliative care providers is not expected to meet the growing demand. All generalist and specialty providers who care for the seriously ill play a role in the delivery of high-quality, primary palliative care.34 The Society of Hospital Medicine has collaborated with The Hastings Center to develop a care pathway for seriously ill hospitalized patients that delineates the role of hospitalists in identifying patients in need of prognosis and goals conversations (Fig. 2). In addition to discussing prognosis and goals, hospitalists can play a critical role in 2 other key aspects of a conversation about serious illness that will ensure high-quality, coordinated end-of-life care: 1. Coordinating communication among key providers about prognostic assessments, and 2. Documenting salient points from goals of care discussions in handoffs and discharge summaries to facilitate care across the continuum. When should hospitalists discuss prognosis with patients? Because prognostic awareness is an integral aspect of informed decision making in serious illness, the following scenarios are appropriate times to offer a discussion on prognosis: New diagnosis of serious illness. Major medical decisions with uncertain outcome.
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Fig. 2. Society of Hospital Medicine (SHM)/Hastings Center primary palliative care communication pathway. POLST/MOLST, physician orders for life-sustaining treatment/medical orders for life-sustaining treatment. (ª Society of Hospital Medicine and The Hastings Center, 2017. This care pathway was developed by the Society of Hospital Medicine in collaboration with The Hastings Center and funded by a grant from the Milbank Foundation.)
Patient and/or family request treatment that is inconsistent with good clinical judgment. Sentinel hospitalization: “A hospitalization in the patient’s disease course that heralds a need to reassess prognosis, patient understanding, treatment options and intensities, and goals of care.”35 Common criteria for defining a sentinel hospitalization include the following: “No” answer to the “surprise question.” Metastatic solid cancer admitted with uncontrolled symptoms. Progressive chronic kidney disease with consideration of hemodialysis. Advanced chronic obstructive pulmonary disease or congestive heart failure with frequent hospitalization. Advanced dementia with frequent urinary tract infection, aspiration pneumonia, and eating problems. More than 3 hospitalizations in 6 months. Prolonged stay in the intensive care unit (>7 days). How can hospitalists assess prognosis? Common barriers to discussing prognosis include not recognizing when prognosis is limited, a lack of training in assessing and discussing prognosis, and a fear of being wrong. Understanding that there are data and tools to help with assessing prognosis may help to overcome some barriers. Box 1 lists general indicators of worsening prognosis for most disease states. One step in assessing prognosis is using clinical
Addressing Prognosis in Serious Illness
Box 1 General indicators for worsening prognosis in serious illness Declining functional statusa Unintentional weight lossb Malnutrition (low albumin) Presence of multiple comorbidities Frequent hospitalizations a May not apply to certain neurologic conditions such as amyotrophic lateral sclerosis and stroke. b Non–water-weight loss in congestive heart failure (“cardiac cachexia”).
intuition; studies have shown that physicians tend to overestimate prognosis; however, more clinical experience is associated with increased accuracy of prognostication.33 There are also numerous studies, especially in the oncology literature, that provide data on prognosis. It is important to keep in mind that these studies are often done on younger, healthier patients without multiple comorbidities, likely resulting in an overestimation of outcomes for sicker patients. Work has also been done to create prognostic indices for various disease states that combine findings from history, physical examination, and laboratory studies such as the Charlson Comorbidity Index. There are limitations to prognostic indices, as well, because they are often developed on large cohorts of patients to determine a median survival of a disease state, making it difficult to interpret the information for a specific patient. Furthermore, it is difficult to account for how other medical comorbidities, symptoms, and psychosocial factors can affect the prognosis for an individual. Our recommendation is to use a combined approach of using a prognostic index as a tool to generate a general sense of prognosis, then integrating your own clinical intuition and experience to tailor prognosis to your specific patient, accounting for other factors that may not be included in the prognostic index. As described elsewhere in this article, it is also accepted to acknowledge uncertainty in prognosis and a precise estimate of prognosis is not required for an effective discussion. What resources are available to help hospitalists with prognostication? Prognostic indices exist for various disease states to help clinicians use objective parameters to determine prognosis. Table 3 outlines various indices that are available according to disease state.36–43 Limitations to these indices and advice on appropriate use were discussed. Some indices have web-based calculators for ease of access in the clinical setting (see Table 3). There are also prognostic indices tailored to the hospitalized patient. ePrognosis: This Website directs you to correct clinical calculator to determine prognosis based on a patient’s clinical setting.44 GO-FAR (Good Outcome Following Attempted Resuscitation): This on-line calculator estimates the likelihood of surviving CPR neurologically intact based on presence of medical comorbidities.45,46 Fast Facts: This website and app are hosted by the Palliative Care Network of Wisconsin (PCNOW) and provides brief updates on palliative care topics, including prognosis, which can be easily used during clinical workflow.47
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Table 3 Prognostic indices by disease state Disease State
Prognostic Index
Website for Calculator
Congestive heart failure
Seattle Heart Failure Model (outpatients)36 EFFECT (hospitalized patients)37
https://depts.washington.edu/shfm/
End-stage liver disease
MELD38
https://optn.transplant.hrsa.gov/resources/ allocation-calculators/meld-calculator/
End-stage renal disease
Charlson Comorbidity Index39
http://touchcalc.com/calculators/cci_js
Cancer
ECOG40
http://ecog-acrin.org/resources/ecogperformance-status
Dementia
FAST41 Mortality Risk Index42
http://www.mypcnow.org/blank-txv87
COPD
BODE scale43
http://www.mypcnow.org/blank-ye0fz
http://www.ccort.ca/Research/CHFRiskModel. html
Abbreviations: BODE, body mass index, airflow obstruction, dyspnea and exercise capacity; COPD, chronic obstructive pulmonary disease; ECOG, Eastern Cooperative Oncology Group; EFFECT, Enhanced Feedback for Effective Cardiac Treatment; FAST, Functional Assessment Staging; MELD. Model for End-stage Liver Disease. Data from Refs.36–43
How does one prepare for a prognosis discussion? Discussing prognosis is difficult even for the most seasoned clinicians. Fortunately, effective communication is a learned and teachable skill. There are growing bodies of literature, web sites, courses, and videos to help health care providers develop communication skills. What is evident from the various teaching tools is that there are specific components of an effective discussion of prognosis. The conversation about prognosis starts before entering the patient’s room and involves the following steps. Confirm medical facts. Obtain consensus with key providers such as the primary care physician and/or primary specialists before sharing prognostic information with patients. Not having consensus could result in mixed messages and loss of trust with the patient. Invite key people to the conversation; this may include providers (e.g., the primary care physician or outpatient oncologist) or patient’s family or friends. Protect time: Meetings to discuss prognosis and goals in the hospital setting may take up to 1 hour, although many are shorter. It is, therefore, best to anticipate this and plan to schedule meetings when the providers can minimize interruptions. Attend to privacy: Ideally, have the discussion in a private room with the door closed whenever possible. Think through what you will say in advance, including estimates of best case, worst case, and most likely prognosis. What framework should hospitalists use when discussing prognosis with patients? There are several useful approaches that may be employed for discussing prognosis, (Table 4) however one of the easiest to remember is ask–tell–ask.48–50 Ask: Ask if they want to talk about prognosis and what they already know. Ask about information preferences.
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Table 4 Approaches for discussing prognosis SPIKES49
PREPARED50
ADAPT48
Set up interview Assess patient Perception Obtain patient Invitation Give Knowledge and information Address Emotions with Empathic responses Strategy and Summary
Prepare for discussion Relate to the person Elicit patient and caregiver preference Provide information Acknowledge emotions and concerns (Foster) Realistic Hope Encourage questions Document
Ask what they already know about future Discover what information your patient wants Anticipate ambivalence Provide information Track emotion and respond with empathy
Data from Refs.48–50
Tell: Give information about the prognosis in small amounts and build on what they already know. Ask: Ask patient to repeat understanding of what has been said and if they would like to hear more. How should I tell the patient about the prognosis? The first step in discussing prognosis is to ask the patient what they already understand about their illness and prognosis, which can help to identify knowledge gaps and avoid dangerous assumptions. You should then ask the patient what information they would like from you about their prognosis. Information about prognosis should then be tailored to the patient’s preferences for information. If you provide prognostic information to patients who do not desire it, you run the risk of causing emotional harm to the patient and you may erode trust and damage the patient–doctor relationship. Box 2 provides helpful language to use when discussing prognosis.51,52 Box 2 Helpful language for discussing prognosis Assessing the patient’s understanding of illness and prognosis “Tell me what your doctors have told you about your condition and what to expect in the future.” Understanding information-sharing preferences “Would you like me to provide information about what to expect with your illness in the future?” “Some people want all of the details, others want only the big picture, and others want no information. Which do you prefer?” Sharing prognosis and managing uncertainty Wish/worry statement: “I wish things were different, but I worry that time may be measured in . [hours to days, days to weeks, weeks to months, months to year]. “It is impossible to predict with certainty, but I anticipate that this is probably as strong as you will feel and I believe your illness will continue to progress.” “Although you could have a lot of time, it is also possible that something could happen suddenly, so we should talk about this possibility and prepare for it.” “What can I do to help you now, given that we are unsure of exactly what the future will bring?” Data from Refs.51,52
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It is common for patients with a serious illness to feel ambivalent about discussing prognosis. Acknowledging ambivalence can put patients at ease and it may make it easier to proceed with further discussion about prognosis. It is important to not disclose information that patients are not ready to hear. Fig. 3 shows strategies to help navigate the conversation when patients are ambivalent about hearing prognosis.53 The following are recommendations for how to communicate prognostic information with seriously ill patients. (Table 5 provides additional communication pearls and pitfalls). Use clear, jargon-free language. Pace information, using small amounts and building on what they know. Acknowledge uncertainty and the inability to predict prognosis with complete accuracy (Box 2 for helpful language); do not allow uncertainty to be a reason to avoid discussing prognosis. Give prognosis as a range of time and avoid being too exact with timeframes. Prognostication cannot be highly accurate for a particular individual and by providing a range you leave room for hope that the patient will be one of the patients who does better than the norm. Examples of ranges include: Hours to days; days to weeks; weeks to a few months; or if you are less certain about the time frame but you feel patient is at risk for dying in the next year, you can say “most likely measured in months rather than years.” Information can also be presented as an estimate of best case, worst case, and most likely. Alternatively, prognosis may be expressed in terms of expected changes in functional status (improvement or decline).
Fig. 3. Strategies for navigating patient’s ambivalence when discussing prognosis.
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Table 5 Communication Pearls and Pitfalls16 Pearls
Pitfalls
Allow for silence after prognostic information Focusing too much on medical information and providing facts in response to emotion. is shared. This helps ensure the information is absorbed and gives the patient time to respond emotionally. Saying “there is nothing more we can do.” When patients respond to bad news with a There are always things that can be done to cognitive question you should attempt to improve a patient’s quality of life. identify and address the emotion underlying the question rather than providing a factual response. This approach helps keep the conversation focused on the big picture. Use the expression “I wish” and “I worry” (e.g. Expecting patients and families to agree with providers about prognosis immediately “I wish things were different” or “I worry after a discussion. Accepting a poor that this is as strong as you will be”) to help prognosis takes time, and research shows align yourself with the patient/family while that information from providers is only part conveying your concern about the situation. of what informs a patient and family formulation of prognosis.54,55 Ask the patient “tell me more.” This is an effective way of deepening your discussion and uncovering significant hopes or concerns that the patient has.
Talking more than listening. When providers talk too much they miss opportunities to learn about what matters most to patients. Active listening and empathizing with the patient are therapeutic interventions in and of themselves
Data from Refs.16,54,55
Allow for silence after you share prognosis to give the patient time to absorb the information. This also gives you the opportunity to observe the emotional reaction of the patient. Acknowledge emotions (discussed elsewhere in this article) and provide empathic statements (See Table 5). How should hospitalists respond to the patient’s emotions? Common emotions after learning about a poor prognosis include sadness, fear, anger, and shock. Acknowledging and validating emotions will help the hospitalist to align with their patient and will facilitate further exploration of a patient’s goals and fears about the future. Helpful strategies for responding to emotion include the following. Pay attention to nonverbal cues, including facial expressions, crying, looking away, and tone of voice. These cues will help you to identify the emotions your patient is experiencing. Name and validate the emotion; for example, “I can see this is very upsetting for you” or “I can see that this is not what you were expecting.” Explore the emotion; for example, “Can you tell me what you are thinking right now?” Use empathic statements; for example, “I can only imagine how difficult this must be for you” or, “It is understandable that this news is very upsetting.”
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Do not give misleading or premature reassurance to try to positively impact hope. Although this may ease emotions temporarily, it may backfire if things do not go well and may prevent patients from focusing on important goals before it is too late. Reassure that you will not abandon the patient and that there are treatments available to manage symptoms. Support the patient by exploring and facilitating realistic goals and ways of coping; examples of responses include, “What do you think is most important to you under these circumstances?” and, “What will be most helpful to you at this time?” How does the hospitalist know that communication was effective? Successful communication is “understanding the patient’s evolving information needs and providing the information in a way that the patient can understand.”52 Key elements of successful communication about prognosis in serious illness include the following. Providing patients with the information they want, with realism and compassion. Recognizing that achieving prognostic awareness is a process and, therefore, may require multiple conversations over time. Completing high-quality documentation and handoffs to help ensure successful communication across the care continuum. To confirm that successful communication has occurred, one should ask the patient or caregiver to tell you what they have understood from the discussion (e.g., “Tell me what you are taking away from this discussion?”).52 SUMMARY
All patients with a serious illness deserve to receive information about prognosis. Developing prognostic awareness is a process that takes time and provides the foundation for informed decision making and patient-centered care. Hospitalists play a key role in helping hospitalized patients understand prognosis and developing realistic goals of care in the face of serious illness. A “no” answer to the “surprise question” (“Would you be surprised if this patient died in the next year?”) helps to identify patients with serious illness. Hospitalists should offer these patients information on prognosis. High-quality documentation and handoffs by hospitalists about prognosis and goals of care discussions are critical to ensure that end-of-life care is aligned with patients’ values and goals. REFERENCES
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28. Hagerty R, Butow PN, Ellis PM, et al. Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis. J Clin Oncol 2005;23(6):1278–88. 29. Davison S, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006;333(7574):886. 30. Hanson L, Danis M, Garrett J. What is wrong with end-of-life care? Opinions of bereaved family members. J Am Geriatr Soc 1997;45(11):1339–44. 31. Steinhauser K, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000; 284(19):2476–82. 32. Christakis N, Iwashyna T. Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med 1998;158(21):2389–95. 33. Christakis N. Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study. BMJ 2000;320:469. 34. Quill T, Abernethy A. Generalist plus specialist palliative care - creating a more sustainable model. N Engl J Med 2013;368:1173–5. 35. Lin R, Adelman RD, Diamond RR, et al. The sentinel hospitalization and the role of palliative care. J Hosp Med 2014;9(5):320–3. 36. Levy W, Mozaffarian D, Linker DT, et al. The Seattle heart failure model. Prediction of survival in heart failure. Circulation 2006;113(11):1424–33. 37. Lee D, Austin PC, Rouleau JL, et al. Predicting mortality among patients hospitalized for heart failure: derivation and validation of a clinical model. JAMA 2003; 290(19):2581–7. 38. Said A, Williams J, Holden J, et al. Model for end stage liver disease score predicts mortality across a broad spectrum of liver disease. J Hepatol 2004;40(6): 897–903. 39. Cohen LM, Ruthazer R, Moss AH, et al. Predicting six-month mortality for patients who are on maintenance hemodialysis. Clin J Am Soc Nephrol 2010;5(1):72–9. 40. Oken M, Creech R, Tormey DC, et al. Toxicity and response criteria of the Eastern cooperative oncology group. Am J Clin Oncol 1982;5:649–55. 41. Reisberg B. Functional assessment staging (FAST). Psychopharmacol Bull 1988; 24(4):653–9. 42. Mitchell S, Kiely D, Hamel MB, et al. Estimating prognosis for nursing home residents with advanced dementia. JAMA 2004;291(22):2734–40. 43. Celli B, Cote C, Marin JM, et al. The body-mass index, airflow obstruction, dyspnea, and exercise capacity index in chronic obstructive pulmonary disease. N Engl J Med 2004;350(10):1005–12. 44. University of California at San Francisco. ePrognosis. Available at: http:// eprognosis.ucsf.edu/index.php. Accessed February 19, 2017. 45. Ebell M, Jang W, Shen Y, et al. Development and validation of the good outcome following attempted resuscitation (GO-FAR) score to predict neurologically intact survival after in-hospital cardiopulmonary resuscitation. JAMA Intern Med 2013; 173(20):1872–8. 46. Good Outcome Following Attempted Resuscitation (GO-FAR). Available at: https://www.gofarcalc.com. Accessed February 19, 2017. 47. Palliative Care Network of Wisconsin. Available at: http://www.mypcnow.org/fastfacts. Accessed February 19, 2017. 48. Oncotalk. Fundamental communication skills. Available at: http://www.vitaltalk. org/sites/default/files/Oncotalk_Fundamental_Skills.pdf. Accessed February 19, 2017.
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49. Baile W, Buckman R, Lenzi R, et al. SPIKES- a Six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000;5(4):302–11. 50. Clayton J, Hancock K, Butow P, et al. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 2007;186(12 Suppl). S77, S79, S83–108. 51. Smith A, White DB, Arnold RM. Uncertainty – the other side of prognosis. N Engl J Med 2013;368(26):2448–50. 52. Back A, Arnold R. Discussing prognosis: “How much do you want to know?” Talking to patients who are prepared for explicit information. J Clin Oncol 2006; 24(25):4209–13. 53. Back A, Arnold R. Discussing prognosis: “How much do you want to know?” Talking to patients who do not want information or who are ambivalent. J Clin Oncol 2006;24(25):4214–7. 54. Anderson W, Cimino J, Ernecoff N, et al. Communicating with surrogates about prognosis in ICUs: a multicenter study of key stakeholders’ perspectives. Ann Am Thorac Soc 2015;12(2):142–52. 55. Boyd E, Lo B, Evans L, et al. “It’s not just what the doctor tells me”: factors that influence surrogate decision-makers’ perceptions of prognosis. Crit Care Med 2010;38(5):1270–5.
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*, Kosha Thakore,
MD
b
, Wendy G. Anderson,
c,d MD, MS
KEYWORDS Prognosis Serious illness Shared decision making Communication Uncertainty Goals of care
HOSPITAL MEDICINE CLINICS CHECKLIST
1. Prognostic awareness in serious illness (e.g., advanced congestive heart failure, advanced dementia, advanced cancer) provides the foundation for: a. Informed decision making b. Determining realistic goals of care c. Providing patient-centered care 2. Many patients with serious illness are unaware of their prognosis and likely outcomes of treatments, yet many want this information. 3. Hospitalists play a key role in helping hospitalized patients understand prognosis and developing realistic goals of care in the face of serious illness. 4. A “no” answer to the “surprise question” (“Would you be surprised if this patient died in the next year?”) helps to identify patients with serious illness who are at CONTINUED
Disclosure: None of the authors have commercial or financial conflicts of interest or any relevant funding sources. a Pain and Palliative Care Service, Newton-Wellesley Hospital, Tufts University School of Medicine, 2014 Washington Street, Ellison Building 2nd Floor, Newton, MA 02462, USA; b Pain and Palliative Care Service, Newton-Wellesley Hospital, Tufts University School of Medicine, 2014 Washington Street, Ellison Building 2nd Floor, 2014 Washington Street, Newton, MA 02462, USA; c Palliative Care Program, Division of Hospital Medicine, Department of Medicine, University of California San Francisco Medical Center, University of California San Francisco School of Medicine, UC Hall Building, 533 Parnassus Avenue, Room U-256, Box 0131, San Francisco, CA 94143-0131, USA; d Department of Physiological Nursing, University of California San Francisco School of Nursing, UC Hall Building, 533 Parnassus Avenue, Room U-256, Box 0131, San Francisco, CA 94143-0131, USA * Corresponding author. E-mail address: [email protected] Hosp Med Clin 6 (2017) 359–373 http://dx.doi.org/10.1016/j.ehmc.2017.04.006 2211-5943/17/ª 2017 Elsevier Inc. All rights reserved.
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CONTINUED
increased risk of death in the next year. Hospitalists should offer these patients information on prognosis. 5. Key elements for prognosis discussions in serious illness include the following: a. Prepare for the discussion b. Assess what the patient knows and what they want to know c. Anticipate ambivalence d. Provide information about prognosis that the patient or surrogate requests in a manner that is direct, honest and jargon free e. Acknowledge uncertainty f. Acknowledge emotions g. Check for understanding—ask what the patient is taking home from the discussion h. Wrap up with concrete next steps 6. High-quality documentation and handoffs by hospitalists about prognosis and goals of care discussions helps ensure that end-of-life care is aligned with patients’ values and goals.
DEFINITIONS
What is prognostication? Prognostication is a prediction of the future course of a patient’s illness that is based on medical knowledge and experience. Prognosis includes estimates of survival, but also includes assessment of disease progression, relief of symptoms or functional outcomes. The 2 main components of prognostication are formulation (‘foreseeing’) and communication (‘foretelling’).1 What is serious illness? Discussion of prognosis is most important for patients who have a serious illness. To identify patients who would benefit from palliative care, including discussion of prognosis, palliative care researchers and clinicians developed the following working definition: A serious illness is a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress.2 Common serious illnesses encountered in the hospital setting include advanced congestive heart failure, advanced dementia, end-stage liver disease, advanced cancer, advanced chronic obstructive pulmonary disease, end-stage renal disease, multiorgan system failure, frailty, and multiple comorbid illnesses. Because providers often struggle with uncertainty in predicting whether a patient will die within a certain period, the “surprise question” (“Would you be surprised if this patient died in the next year?”) is clinically useful in identifying patients at increased risk of dying who should be screened for palliative care needs, including discussion of prognosis.3–6 If the provider would not be surprised by the patient’s death in a year, prognostic discussion should be offered to the patient or family.
Addressing Prognosis in Serious Illness
PROGNOSTICATION IN SERIOUS ILLNESS
Why should hospitalists discuss prognosis in serious illness? Prognosis is a key element of communication in serious illness and serves as a foundation for determining realistic goals of care and a treatment plan that will help to achieve these goals (Fig. 1). Prognostic awareness changes decisions made by seriously ill patients and is an essential component of informed decision making. Studies show that patients and health care proxies are less likely to choose invasive, lifeextending treatments such as cardiopulmonary resuscitation (CPR),7,8 chemotherapy,9 and other burdensome interventions10 when they are aware that a condition is terminal and life expectancy is measured in months, rather than years. Prognostic awareness has particular importance near end of life because it provides the foundation for discussing realistic goals of care and helps patients and families prepare for dying.11 Additionally, most patients and families report that they want prognostic information, although many do not ask. Table 1 outlines how discussing prognosis has benefits for patients’ quality of life, caregiver outcomes, clinician–patient relationships, and costs of care.12–19 How well-informed are seriously ill patients? Unfortunately, many patients and families facing serious illness have a limited understanding about prognosis. Studies evaluating patients or caregivers of patients with end-stage heart failure, metastatic lung and colorectal cancer, and advanced dementia indicate a majority is unaware that the condition is terminal or that treatment is not curative (Table 2).10,20,21 A majority of patients and caregivers also have unrealistic expectations about the outcomes of CPR. Hospitalists routinely ask patients about their preferences for the use, or withholding, of CPR; however, the lack of prognostic awareness suggests that decision making about CPR is unlikely to be fully informed. In one study which surveyed patients aged 70 years or older, 81% of respondents believed they had a greater than 50% chance of surviving CPR and leaving the hospital and nearly one-quarter believed they had a greater than 90% chance of survival.22 Data support that the likelihood of surviving CPR to hospital discharge is far lower (<20% in most studies). Because hospitalists are responsible for engaging in shared decision making with seriously ill hospitalized patients, it is important for the hospitalist to be able to assess patient and family understanding of prognosis as well as the risks and benefits of proposed treatment options, including CPR, to ensure that their patients are truly informed and patient autonomy is supported.
Fig. 1. Elements of ideal communication in serious illness.
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Table 1 Benefits of discussions about prognosis and goals Outcome
Study Findings
Clinician–patient relationship12,13
Hope restored and clinician–patient relationship strengthened when prognosis discussed, even if poor prognosis
Caregiver outcomes14,15
Missed opportunity to prepare for end of life if false hope provided or prognosis not discussed, which was deemed unacceptable to surrogates Long-lasting adverse outcomes for surrogates if prognosis not discussed: stress, guilt, and doubt about decision making
Anxiety and depression16
Terminal cancer patients had less anxiety and depression after prognosis discussed with provider
QOL13,17,18
Patients informed of poor prognosis: less likely to have ICU stay or inhospital death (markers of poor QOL at EOL). More likely to use hospice services (associated with improved QOL at EOL)
Cost of care19
Discussing prognosis associated with 36% reduction in cost of care at EOL
Abbreviations: EOL, end of life; ICU, intensive care unit; QOL, quality of life. Data from Refs.12–19
What kind of information do patients and families want? The majority of patients desire information about prognosis. Approximately 80% of cancer patients and 55% to 65% of frail elders indicate they want information on prognosis.23–27 It is also common for patients to be ambivalent or inconsistent in their desire for information; therefore, the first step in sharing prognosis is asking how much information is wanted. Studies show that patients prefer realism and some patients find that honest, compassionate delivery of bad news to be hope giving.28,29 Conversely, the use of euphemisms or avoiding prognosis discussions and only reviewing treatment options contribute to patients feeling less hopeful or hopeless.23 It is important to note that hope, for seriously ill patients, is not always centered on cure or life prolongation. Other common hopes include30,31: Minimizing pain and symptoms Getting financial affairs in order Being at peace with God
Table 2 Prognostic awareness among seriously ill patients and their caregivers Condition
Prognostic Awareness
Advanced congestive heart failure (median survival 8 mo)20
Two-thirds of caregivers are unaware condition is terminal and believed patient would improve over time
Stage IV lung and colorectal cancer (incurable)21
69% patients with lung cancer, and 81% patients with colorectal cancer thought chemotherapy was curative
Advanced dementia10
Only 18% of health care proxies received information about prognosis 74% of caregivers were unaware that prognosis was <6 mo among patients who died
Data from Refs.10,20,21
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Minimizing burden on family Preparing for dying Feeling that one’s life is complete Mending relationships Having a trusting relationship with health care providers who treat them as a whole person
What is the hospitalist’s role in informing seriously ill patients about prognosis? Although many hospitalists believe that outpatient providers should be primarily responsible for discussions about prognosis, goals of care, and life-sustaining treatments, in most cases there needs to be shared ownership among multiple members of the healthcare team, including primary care providers, specialists, and hospitalists. This is due to a number of factors, including the following. Developing prognostic awareness is a process that evolves over time and often requires more than one conversation with providers. Patients and families may be better able to accept the realities of a poor prognosis when they are acutely ill and hospitalized. Hospitalists can provide an impartial view of the clinical situation and prognosis. Studies have shown that physicians with a longstanding relationship with a patient are less accurate in prognostication.32,33 Support is readily available in the hospital, such as social work, spiritual care, and consultants, including palliative care specialists, if available. Many serious illnesses such as congestive heart failure and chronic obstructive pulmonary disease result in numerous hospitalizations toward the end of life, rendering an outpatient visit to discuss prognosis and goals logistically difficult or impossible. As our population ages, the supply of subspecialty palliative care providers is not expected to meet the growing demand. All generalist and specialty providers who care for the seriously ill play a role in the delivery of high-quality, primary palliative care.34 The Society of Hospital Medicine has collaborated with The Hastings Center to develop a care pathway for seriously ill hospitalized patients that delineates the role of hospitalists in identifying patients in need of prognosis and goals conversations (Fig. 2). In addition to discussing prognosis and goals, hospitalists can play a critical role in 2 other key aspects of a conversation about serious illness that will ensure high-quality, coordinated end-of-life care: 1. Coordinating communication among key providers about prognostic assessments, and 2. Documenting salient points from goals of care discussions in handoffs and discharge summaries to facilitate care across the continuum. When should hospitalists discuss prognosis with patients? Because prognostic awareness is an integral aspect of informed decision making in serious illness, the following scenarios are appropriate times to offer a discussion on prognosis: New diagnosis of serious illness. Major medical decisions with uncertain outcome.
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Fig. 2. Society of Hospital Medicine (SHM)/Hastings Center primary palliative care communication pathway. POLST/MOLST, physician orders for life-sustaining treatment/medical orders for life-sustaining treatment. (ª Society of Hospital Medicine and The Hastings Center, 2017. This care pathway was developed by the Society of Hospital Medicine in collaboration with The Hastings Center and funded by a grant from the Milbank Foundation.)
Patient and/or family request treatment that is inconsistent with good clinical judgment. Sentinel hospitalization: “A hospitalization in the patient’s disease course that heralds a need to reassess prognosis, patient understanding, treatment options and intensities, and goals of care.”35 Common criteria for defining a sentinel hospitalization include the following: “No” answer to the “surprise question.” Metastatic solid cancer admitted with uncontrolled symptoms. Progressive chronic kidney disease with consideration of hemodialysis. Advanced chronic obstructive pulmonary disease or congestive heart failure with frequent hospitalization. Advanced dementia with frequent urinary tract infection, aspiration pneumonia, and eating problems. More than 3 hospitalizations in 6 months. Prolonged stay in the intensive care unit (>7 days). How can hospitalists assess prognosis? Common barriers to discussing prognosis include not recognizing when prognosis is limited, a lack of training in assessing and discussing prognosis, and a fear of being wrong. Understanding that there are data and tools to help with assessing prognosis may help to overcome some barriers. Box 1 lists general indicators of worsening prognosis for most disease states. One step in assessing prognosis is using clinical
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Box 1 General indicators for worsening prognosis in serious illness Declining functional statusa Unintentional weight lossb Malnutrition (low albumin) Presence of multiple comorbidities Frequent hospitalizations a May not apply to certain neurologic conditions such as amyotrophic lateral sclerosis and stroke. b Non–water-weight loss in congestive heart failure (“cardiac cachexia”).
intuition; studies have shown that physicians tend to overestimate prognosis; however, more clinical experience is associated with increased accuracy of prognostication.33 There are also numerous studies, especially in the oncology literature, that provide data on prognosis. It is important to keep in mind that these studies are often done on younger, healthier patients without multiple comorbidities, likely resulting in an overestimation of outcomes for sicker patients. Work has also been done to create prognostic indices for various disease states that combine findings from history, physical examination, and laboratory studies such as the Charlson Comorbidity Index. There are limitations to prognostic indices, as well, because they are often developed on large cohorts of patients to determine a median survival of a disease state, making it difficult to interpret the information for a specific patient. Furthermore, it is difficult to account for how other medical comorbidities, symptoms, and psychosocial factors can affect the prognosis for an individual. Our recommendation is to use a combined approach of using a prognostic index as a tool to generate a general sense of prognosis, then integrating your own clinical intuition and experience to tailor prognosis to your specific patient, accounting for other factors that may not be included in the prognostic index. As described elsewhere in this article, it is also accepted to acknowledge uncertainty in prognosis and a precise estimate of prognosis is not required for an effective discussion. What resources are available to help hospitalists with prognostication? Prognostic indices exist for various disease states to help clinicians use objective parameters to determine prognosis. Table 3 outlines various indices that are available according to disease state.36–43 Limitations to these indices and advice on appropriate use were discussed. Some indices have web-based calculators for ease of access in the clinical setting (see Table 3). There are also prognostic indices tailored to the hospitalized patient. ePrognosis: This Website directs you to correct clinical calculator to determine prognosis based on a patient’s clinical setting.44 GO-FAR (Good Outcome Following Attempted Resuscitation): This on-line calculator estimates the likelihood of surviving CPR neurologically intact based on presence of medical comorbidities.45,46 Fast Facts: This website and app are hosted by the Palliative Care Network of Wisconsin (PCNOW) and provides brief updates on palliative care topics, including prognosis, which can be easily used during clinical workflow.47
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Table 3 Prognostic indices by disease state Disease State
Prognostic Index
Website for Calculator
Congestive heart failure
Seattle Heart Failure Model (outpatients)36 EFFECT (hospitalized patients)37
https://depts.washington.edu/shfm/
End-stage liver disease
MELD38
https://optn.transplant.hrsa.gov/resources/ allocation-calculators/meld-calculator/
End-stage renal disease
Charlson Comorbidity Index39
http://touchcalc.com/calculators/cci_js
Cancer
ECOG40
http://ecog-acrin.org/resources/ecogperformance-status
Dementia
FAST41 Mortality Risk Index42
http://www.mypcnow.org/blank-txv87
COPD
BODE scale43
http://www.mypcnow.org/blank-ye0fz
http://www.ccort.ca/Research/CHFRiskModel. html
Abbreviations: BODE, body mass index, airflow obstruction, dyspnea and exercise capacity; COPD, chronic obstructive pulmonary disease; ECOG, Eastern Cooperative Oncology Group; EFFECT, Enhanced Feedback for Effective Cardiac Treatment; FAST, Functional Assessment Staging; MELD. Model for End-stage Liver Disease. Data from Refs.36–43
How does one prepare for a prognosis discussion? Discussing prognosis is difficult even for the most seasoned clinicians. Fortunately, effective communication is a learned and teachable skill. There are growing bodies of literature, web sites, courses, and videos to help health care providers develop communication skills. What is evident from the various teaching tools is that there are specific components of an effective discussion of prognosis. The conversation about prognosis starts before entering the patient’s room and involves the following steps. Confirm medical facts. Obtain consensus with key providers such as the primary care physician and/or primary specialists before sharing prognostic information with patients. Not having consensus could result in mixed messages and loss of trust with the patient. Invite key people to the conversation; this may include providers (e.g., the primary care physician or outpatient oncologist) or patient’s family or friends. Protect time: Meetings to discuss prognosis and goals in the hospital setting may take up to 1 hour, although many are shorter. It is, therefore, best to anticipate this and plan to schedule meetings when the providers can minimize interruptions. Attend to privacy: Ideally, have the discussion in a private room with the door closed whenever possible. Think through what you will say in advance, including estimates of best case, worst case, and most likely prognosis. What framework should hospitalists use when discussing prognosis with patients? There are several useful approaches that may be employed for discussing prognosis, (Table 4) however one of the easiest to remember is ask–tell–ask.48–50 Ask: Ask if they want to talk about prognosis and what they already know. Ask about information preferences.
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Table 4 Approaches for discussing prognosis SPIKES49
PREPARED50
ADAPT48
Set up interview Assess patient Perception Obtain patient Invitation Give Knowledge and information Address Emotions with Empathic responses Strategy and Summary
Prepare for discussion Relate to the person Elicit patient and caregiver preference Provide information Acknowledge emotions and concerns (Foster) Realistic Hope Encourage questions Document
Ask what they already know about future Discover what information your patient wants Anticipate ambivalence Provide information Track emotion and respond with empathy
Data from Refs.48–50
Tell: Give information about the prognosis in small amounts and build on what they already know. Ask: Ask patient to repeat understanding of what has been said and if they would like to hear more. How should I tell the patient about the prognosis? The first step in discussing prognosis is to ask the patient what they already understand about their illness and prognosis, which can help to identify knowledge gaps and avoid dangerous assumptions. You should then ask the patient what information they would like from you about their prognosis. Information about prognosis should then be tailored to the patient’s preferences for information. If you provide prognostic information to patients who do not desire it, you run the risk of causing emotional harm to the patient and you may erode trust and damage the patient–doctor relationship. Box 2 provides helpful language to use when discussing prognosis.51,52 Box 2 Helpful language for discussing prognosis Assessing the patient’s understanding of illness and prognosis “Tell me what your doctors have told you about your condition and what to expect in the future.” Understanding information-sharing preferences “Would you like me to provide information about what to expect with your illness in the future?” “Some people want all of the details, others want only the big picture, and others want no information. Which do you prefer?” Sharing prognosis and managing uncertainty Wish/worry statement: “I wish things were different, but I worry that time may be measured in . [hours to days, days to weeks, weeks to months, months to year]. “It is impossible to predict with certainty, but I anticipate that this is probably as strong as you will feel and I believe your illness will continue to progress.” “Although you could have a lot of time, it is also possible that something could happen suddenly, so we should talk about this possibility and prepare for it.” “What can I do to help you now, given that we are unsure of exactly what the future will bring?” Data from Refs.51,52
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It is common for patients with a serious illness to feel ambivalent about discussing prognosis. Acknowledging ambivalence can put patients at ease and it may make it easier to proceed with further discussion about prognosis. It is important to not disclose information that patients are not ready to hear. Fig. 3 shows strategies to help navigate the conversation when patients are ambivalent about hearing prognosis.53 The following are recommendations for how to communicate prognostic information with seriously ill patients. (Table 5 provides additional communication pearls and pitfalls). Use clear, jargon-free language. Pace information, using small amounts and building on what they know. Acknowledge uncertainty and the inability to predict prognosis with complete accuracy (Box 2 for helpful language); do not allow uncertainty to be a reason to avoid discussing prognosis. Give prognosis as a range of time and avoid being too exact with timeframes. Prognostication cannot be highly accurate for a particular individual and by providing a range you leave room for hope that the patient will be one of the patients who does better than the norm. Examples of ranges include: Hours to days; days to weeks; weeks to a few months; or if you are less certain about the time frame but you feel patient is at risk for dying in the next year, you can say “most likely measured in months rather than years.” Information can also be presented as an estimate of best case, worst case, and most likely. Alternatively, prognosis may be expressed in terms of expected changes in functional status (improvement or decline).
Fig. 3. Strategies for navigating patient’s ambivalence when discussing prognosis.
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Table 5 Communication Pearls and Pitfalls16 Pearls
Pitfalls
Allow for silence after prognostic information Focusing too much on medical information and providing facts in response to emotion. is shared. This helps ensure the information is absorbed and gives the patient time to respond emotionally. Saying “there is nothing more we can do.” When patients respond to bad news with a There are always things that can be done to cognitive question you should attempt to improve a patient’s quality of life. identify and address the emotion underlying the question rather than providing a factual response. This approach helps keep the conversation focused on the big picture. Use the expression “I wish” and “I worry” (e.g. Expecting patients and families to agree with providers about prognosis immediately “I wish things were different” or “I worry after a discussion. Accepting a poor that this is as strong as you will be”) to help prognosis takes time, and research shows align yourself with the patient/family while that information from providers is only part conveying your concern about the situation. of what informs a patient and family formulation of prognosis.54,55 Ask the patient “tell me more.” This is an effective way of deepening your discussion and uncovering significant hopes or concerns that the patient has.
Talking more than listening. When providers talk too much they miss opportunities to learn about what matters most to patients. Active listening and empathizing with the patient are therapeutic interventions in and of themselves
Data from Refs.16,54,55
Allow for silence after you share prognosis to give the patient time to absorb the information. This also gives you the opportunity to observe the emotional reaction of the patient. Acknowledge emotions (discussed elsewhere in this article) and provide empathic statements (See Table 5). How should hospitalists respond to the patient’s emotions? Common emotions after learning about a poor prognosis include sadness, fear, anger, and shock. Acknowledging and validating emotions will help the hospitalist to align with their patient and will facilitate further exploration of a patient’s goals and fears about the future. Helpful strategies for responding to emotion include the following. Pay attention to nonverbal cues, including facial expressions, crying, looking away, and tone of voice. These cues will help you to identify the emotions your patient is experiencing. Name and validate the emotion; for example, “I can see this is very upsetting for you” or “I can see that this is not what you were expecting.” Explore the emotion; for example, “Can you tell me what you are thinking right now?” Use empathic statements; for example, “I can only imagine how difficult this must be for you” or, “It is understandable that this news is very upsetting.”
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Do not give misleading or premature reassurance to try to positively impact hope. Although this may ease emotions temporarily, it may backfire if things do not go well and may prevent patients from focusing on important goals before it is too late. Reassure that you will not abandon the patient and that there are treatments available to manage symptoms. Support the patient by exploring and facilitating realistic goals and ways of coping; examples of responses include, “What do you think is most important to you under these circumstances?” and, “What will be most helpful to you at this time?” How does the hospitalist know that communication was effective? Successful communication is “understanding the patient’s evolving information needs and providing the information in a way that the patient can understand.”52 Key elements of successful communication about prognosis in serious illness include the following. Providing patients with the information they want, with realism and compassion. Recognizing that achieving prognostic awareness is a process and, therefore, may require multiple conversations over time. Completing high-quality documentation and handoffs to help ensure successful communication across the care continuum. To confirm that successful communication has occurred, one should ask the patient or caregiver to tell you what they have understood from the discussion (e.g., “Tell me what you are taking away from this discussion?”).52 SUMMARY
All patients with a serious illness deserve to receive information about prognosis. Developing prognostic awareness is a process that takes time and provides the foundation for informed decision making and patient-centered care. Hospitalists play a key role in helping hospitalized patients understand prognosis and developing realistic goals of care in the face of serious illness. A “no” answer to the “surprise question” (“Would you be surprised if this patient died in the next year?”) helps to identify patients with serious illness. Hospitalists should offer these patients information on prognosis. High-quality documentation and handoffs by hospitalists about prognosis and goals of care discussions are critical to ensure that end-of-life care is aligned with patients’ values and goals. REFERENCES
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