Communication of prognosis in palliative care
- Alexander Smith, MD
Alexander Smith, MD
- Associate Professor of Medicine
- University of California, San Francisco
Prognosis is the science of estimating the likelihood of an outcome (eg, death, disability) due to a medical condition (eg, cancer, heart failure, late-life disability). Prognosis may address many outcomes that patients care deeply about, such as the likelihood of losing the ability to care for oneself independently, of treatment leading to a cure, or of developing a debilitating condition such as dementia. This topic will focus primarily on communicating prognosis for life expectancy or survival.
Nicholas Christakis has described the "ellipsis of prognosis" in medical teaching [1,2]. In the time of Osler, textbooks focused equally on diagnosis, treatment, and prognosis. Prognosis now makes up a scant one to two lines per chapter of most medical textbooks, and medical students and residents receive little training in how to estimate or communicate prognosis. Additionally, patterns of current practice suggest that prognosis is not routinely incorporated into clinical decision-making.
The growing palliative care movement is refocusing attention on the importance of prognosis in decision making for seriously ill patients [3,4]. Prognosis reaches paramount importance at the end of life, when the risks and burdens of treatments and their alternatives must clearly be weighed in view of the patient’s life expectancy and personal goals.
This topic will discuss the science of estimating prognosis and focus on how best to communicate this information to patients and family members. Indicators of prognosis for specific medical conditions are available in disease-specific topics in UpToDate. A more general discussion about discussing serious news is provided separately. (See "Discussing serious news".)
THE IMPORTANCE OF PROGNOSIS IN CLINICAL PRACTICE
The risks and benefits of any test or treatment must be considered in light of the patient’s expected prognosis. Thus, understanding and communicating prognosis is an important element of any clinical decision-making. Determination of eligibility for hospice, where clinicians must certify a prognosis of six months or less should the disease run its usual course, is the paradigmatic example of the need to be able to determine prognosis. The importance of understanding prognosis for multiple other clinical decisions is shown in a table, organized by shortest prognosis to longest (table 1). The table includes only those decisions where a guideline, professional organization, or recognized experts have recommended a specific prognostic cutoff; these represent only a subset of decisions that are routinely made in light of prognosis.
- Christakis NA. The ellipsis of prognosis in modern medical thought. Soc Sci Med 1997; 44:301.
- Christakis NA. Death Foretold: Prophecy and Prognosis in Medical Care, University of Chicago Press, Chicago 1999.
- Lamont EB, Christakis NA. Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to". JAMA 2003; 290:98.
- Yourman LC, Lee SJ, Schonberg MA, et al. Prognostic indices for older adults: a systematic review. JAMA 2012; 307:182.
- Krantz MJ, Martin J, Stimmel B, et al. QTc interval screening in methadone treatment. Ann Intern Med 2009; 150:387.
- Holmes HM, Bain KT, Zalpour A, et al. Predictors of anticoagulation in hospice patients with lung cancer. Cancer 2010; 116:4817.
- Lampert R, Hayes DL, Annas GJ, et al. HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Heart Rhythm 2010; 7:1008.
- Ahalt C, Walter LC, Yourman L, et al. "Knowing is better": preferences of diverse older adults for discussing prognosis. J Gen Intern Med 2012; 27:568.
- Moulton B, King JS. Aligning ethics with medical decision-making: the quest for informed patient choice. J Law Med Ethics 2010; 38:85.
- King JS, Moulton BW. Rethinking informed consent: the case for shared medical decision-making. Am J Law Med 2006; 32:429.
- Smith AK, Williams BA, Lo B. Discussing overall prognosis with the very elderly. N Engl J Med 2011; 365:2149.
- Weeks JC, Cook EF, O'Day SJ, et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA 1998; 279:1709.
- Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300:1665.
- Weeks JC, Catalano PJ, Cronin A, et al. Patients' expectations about effects of chemotherapy for advanced cancer. N Engl J Med 2012; 367:1616.
- Soylu C, Babacan T, Sever AR, Altundag K. Patients' understanding of treatment goals and disease course and their relationship with optimism, hope, and quality of life: a preliminary study among advanced breast cancer outpatients before receiving palliative treatment. Support Care Cancer 2016; 24:3481.
- Mack JW, Smith TJ. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol 2012; 30:2715.
- Carson SS, Cox CE, Wallenstein S, et al. Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial. JAMA 2016; 316:51.
- Chochinov HM, Tataryn DJ, Wilson KG, et al. Prognostic awareness and the terminally ill. Psychosomatics 2000; 41:500.
- Pruyn JF, Rijckman RM, van Brunschot CJ, van den Borne HW. Cancer patients' personality characteristics, physician-patient communication and adoption of the Moerman diet. Soc Sci Med 1985; 20:841.
- Enzinger AC, Zhang B, Schrag D, Prigerson HG. Outcomes of Prognostic Disclosure: Associations With Prognostic Understanding, Distress, and Relationship With Physician Among Patients With Advanced Cancer. J Clin Oncol 2015; 33:3809.
- Barry LC, Prigerson HG. Perspectives on preparedness for a death among bereaved persons. Conn Med 2002; 66:691.
- Hebert RS, Prigerson HG, Schulz R, Arnold RM. Preparing caregivers for the death of a loved one: a theoretical framework and suggestions for future research. J Palliat Med 2006; 9:1164.
- Salpeter SR, Luo EJ, Malter DS, Stuart B. Systematic review of noncancer presentations with a median survival of 6 months or less. Am J Med 2012; 125:512.e1.
- Salpeter SR, Malter DS, Luo EJ, et al. Systematic review of cancer presentations with a median survival of six months or less. J Palliat Med 2012; 15:175.
- D'Agostino RB Sr, Grundy S, Sullivan LM, et al. Validation of the Framingham coronary heart disease prediction scores: results of a multiple ethnic groups investigation. JAMA 2001; 286:180.
- Antman EM, Cohen M, Bernink PJ, et al. The TIMI risk score for unstable angina/non-ST elevation MI: A method for prognostication and therapeutic decision making. JAMA 2000; 284:835.
- Glare P, Virik K, Jones M, et al. A systematic review of physicians' survival predictions in terminally ill cancer patients. BMJ 2003; 327:195.
- Christakis NA, Lamont EB. Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study. BMJ 2000; 320:469.
- Gwilliam B, Keeley V, Todd C, et al. Prognosticating in patients with advanced cancer--observational study comparing the accuracy of clinicians' and patients' estimates of survival. Ann Oncol 2013; 24:482.
- Feinstein AR. The 'chagrin factor' and qualitative decision analysis. Arch Intern Med 1985; 145:1257.
- Lynn J, Teno JM, Harrell FE Jr. Accurate prognostications of death. Opportunities and challenges for clinicians. West J Med 1995; 163:250.
- Knaus WA, Harrell FE Jr, Lynn J, et al. The SUPPORT prognostic model. Objective estimates of survival for seriously ill hospitalized adults. Study to understand prognoses and preferences for outcomes and risks of treatments. Ann Intern Med 1995; 122:191.
- Teno JM, Harrell FE Jr, Knaus W, et al. Prediction of survival for older hospitalized patients: the HELP survival model. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 2000; 48:S16.
- Charlson ME, Hollenberg JP, Hou J, et al. Realizing the potential of clinical judgment: a real-time strategy for predicting outcomes and cost for medical inpatients. Am J Med 2000; 109:189.
- Fried TR, Bradley EH, O'Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc 2003; 51:1398.
- Marwit SJ, Datson SL. Disclosure preferences about terminal illness: an examination of decision-related factors. Death Stud 2002; 26:1.
- Kaplowitz SA, Campo S, Chiu WT. Cancer patients' desires for communication of prognosis information. Health Commun 2002; 14:221.
- Goldstein D, Thewes B, Butow P. Communicating in a multicultural society. II: Greek community attitudes towards cancer in Australia. Intern Med J 2002; 32:289.
- Elwyn TS, Fetters MD, Gorenflo W, Tsuda T. Cancer disclosure in Japan: historical comparisons, current practices. Soc Sci Med 1998; 46:1151.
- Li S, Chou JL. Communication with the cancer patient in China. Ann N Y Acad Sci 1997; 809:243.
- Sparks L, Mittapalli K. To know or not to know: the case of communication by and with older adult Russians diagnosed with cancer. J Cross Cult Gerontol 2004; 19:383.
- Smith AK, Sudore RL, Pérez-Stable EJ. Palliative care for Latino patients and their families: whenever we prayed, she wept. JAMA 2009; 301:1047.
- Back AL, Arnold RM. 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; 24:4214.
- Yoong J, Park ER, Greer JA, et al. Early palliative care in advanced lung cancer: a qualitative study. JAMA Intern Med 2013; 173:283.
- Dale W, Hemmerich J, Bylow K, et al. Patient anxiety about prostate cancer independently predicts early initiation of androgen deprivation therapy for biochemical cancer recurrence in older men: a prospective cohort study. J Clin Oncol 2009; 27:1557.
- Loewenstein G. Hot-cold empathy gaps and medical decision making. Health Psychol 2005; 24:S49.
- Mack JW, Cronin A, Keating NL, et al. Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol 2012; 30:4387.
- Girgis A, Sanson-Fisher RW. Breaking bad news: consensus guidelines for medical practitioners. J Clin Oncol 1995; 13:2449.
- Boyd EA, Lo B, Evans LR, et al. "It's not just what the doctor tells me:" factors that influence surrogate decision-makers' perceptions of prognosis. Crit Care Med 2010; 38:1270.
- Butow P, Tattersall MHN, Stockler M. Discussing Prognosis and Communicating Risk. In: Handbook of Communication in Oncology and Palliative Care, Kissane D, Bultz B, Butow P, Finlay I (Eds), Oxford University Press, 2010.
- Smith RC. Patient-centered interviewing: an evidence-based method, Lippincott Williams & Wilkins, Philadelphia 2002.
- THE IMPORTANCE OF PROGNOSIS IN CLINICAL PRACTICE
- Patient-important factors
- RATIONALE FOR DISCUSSING PROGNOSIS
- THE SCIENCE OF ESTIMATING PROGNOSIS
- Selecting a prognostic tool and assessing limitations
- Physician errors in prognostication
- ASSESSING PATIENT AND/OR FAMILY READINESS TO DISCUSS PROGNOSIS
- DISCUSSING PROGNOSIS
- When to discuss prognosis
- How to discuss prognosis
- - Stepwise strategy for discussion