Advanced cancer patients' understanding of prognostic information: Applying insights from psychological research

Heather M Derry, M Carrington Reid, Holly G Prigerson, Heather M Derry, M Carrington Reid, Holly G Prigerson

Abstract

Purpose: Informed medical decision-making at the end of life often requires engaging in highly emotional, potentially upsetting discussions about prognosis, while ensuring that patients grasp its personal meaning. Behavioral science offers insights into ways to promote prognostic understanding among patients with advanced cancer.

Summary: In this literature review, we synthesize complementary findings from basic behavioral science and applied clinical research, which suggest that psychological factors can significantly influence both patients' clinical interactions and their prognostic understanding. For example, stress and emotion can affect cognition, which may shape how patients process complex medical information. Additionally, clinicians may be less likely to share prognostic information with distressed patients who, in turn, may be hesitant to ask about their prognosis for fear of the answer. Although traditional approaches for increasing advanced cancer patients' understanding focus on improving information delivery, these efforts may not be sufficient without corresponding interventions that assist patients in managing distress.

Conclusions: Psychological barriers may limit opportunities for patients to fully understand their prognosis and to receive high quality of end-of-life care that is linked with an accurate understanding of their disease and treatment options. Failure to attend to patients' emotional distress may undermine efforts to improve medical communication. This underscores the importance of increased attention to the psychological factors that impede patients' comprehension of material shared in cancer clinic visits, in order to inform interventions that address patient distress both before and after receiving "bad news." Integrating findings from psychological research into prognostic discussions may not only improve advanced cancer patients' mental health, but may also promote their ability to make informed, value-consistent medical decisions.

Keywords: anxiety; delivery of health care; health knowledge; neoplasms; psycho-oncology; psychological factors.

Conflict of interest statement

The authors report no conflicts of interest.

© 2019 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

Figures

Figure 1
Figure 1
Pathways by which psychological factors can impact the information discussed and understood from clinical visits, and potential benefits of identifying and addressing distress as part of medical decision‐making

References

    1. Murphy SL, Xu J, Kochanek KD, Curtin SC, Arias E. Deaths: final data for 2015. Natl Vital Stat Rep. 2017;66:4081‐75.
    1. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin. 2019;69:7‐34.
    1. Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG. End‐of‐life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010;28:1203‐1208.
    1. Yamaguchi T, Maeda I, Hatano Y, et al. Effects of end‐of‐life discussions on the mental health of bereaved family members and quality of patient death and care. J Pain Symptom Manage. 2017;54:17‐26.e1.
    1. Reyna VF, Nelson WL, Han PK, Pignone MP. Decision making and cancer. Am Psychol. 2015;70:105‐118.
    1. El‐Jawahri A, Traeger L, Park ER, et al. Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer. 2014;120:278‐285.
    1. 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;33:3809‐3816.
    1. Hagerty RG, Butow PN, Ellis PA, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol. 2004;22:1721‐1730.
    1. Epstein A, Klimek V, Chow K, et al. Palliative care from cancer diagnosis for all: Memorial Sloan Kettering's “One‐Two‐Three” Program (FR461A). J Pain Symptom Manage. 2018;55:623‐624.
    1. Mack JW, Fasciano KM, Block SD. Communication about prognosis with adolescent and young adult patients with cancer: information needs, prognostic awareness, and outcomes of disclosure. J Clin Oncol. 2018;36:1861‐1867.
    1. Smith AK, McCarthy EP, Paulk E, et al. Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences. J Clin Oncol. 2008;26:4131‐4137.
    1. Shen MJ, Trevino KM, Prigerson HG. The interactive effect of advanced cancer patient and caregiver prognostic understanding on patients’ completion of Do Not Resuscitate orders. Psycho‐Oncology. 2018;27(7):1765‐1771. 10.1002/pon.4723
    1. Tang ST, Chen CH, Wen F‐H, et al. Accurate prognostic awareness facilitates, whereas better quality of life and more anxiety symptoms hinder end‐of‐life care discussions: a longitudinal survey study in terminally Ill cancer patients’ last six months of life. J Pain Symptom Manage. 2018;55:1068‐1076.
    1. Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA. 2000;284:2469‐2475.
    1. Mack JW, Walling A, Dy S, et al. Patient beliefs that chemotherapy may be curative and care received at the end of life among patients with metastatic lung and colorectal cancer. Cancer. 2015;121:1891‐1897.
    1. Prigerson HG. Socialization to dying: social determinants of death acknowledgment and treatment among terminally Ill geriatric patients. J Health Soc Behav. 1992;33:378‐395.
    1. Wright AA. Associations between end‐of‐life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665‐1673.
    1. Gilligan T, Coyle N, Frankel RM, et al. Patient‐clinician communication: American Society of Clinical Oncology Consensus Guideline. J Clin Oncol. 2017;35:3618‐3632.
    1. Epstein R, Street RL. Patient‐centered communication in cancer care: promoting healing and reducing suffering. Bethesda, MD: National Cancer Institute, US Department of Health and Human Services, National Institutes of Health; 2007.
    1. Shilling V, Starkings R, Jenkins V, Fallowfield L. The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers. J Cancer Surviv. 2017;11:590‐603.
    1. Bauml JM, Troxel A, Epperson CN, et al. Scan‐associated distress in lung cancer: quantifying the impact of “scanxiety”. Lung Cancer. 2016;100:110‐113.
    1. Mehnert A, Berg P, Henrich G, Herschbach P. Fear of cancer progression and cancer‐related intrusive cognitions in breast cancer survivors. Psycho‐Oncology. 2009;18:1273‐1280.
    1. Tulsky JA, Beach MC, Butow PN, et al. A research agenda for communication between health care professionals and patients living with serious illness. JAMA Intern Med. 2017;177:1361‐1366.
    1. Emotion and Palliative Care|BRP|DCCPS/NCI/NIH. Available at: . (Accessed: October 31, 2018).
    1. Shields GS, Sazma MA, Yonelinas AP. The effects of acute stress on core executive functions: a meta‐analysis and comparison with cortisol. Neurosci Biobehav Rev. 2016;68:651‐668.
    1. Schoofs D, Preuß D, Wolf OT. Psychosocial stress induces working memory impairments in an n‐back paradigm. Psychoneuroendocrinology. 2008;33:643‐653.
    1. Sliwinski MJ, Almeida DM, Smyth J, Stawski RS. Intraindividual change and variability in daily stress processes: findings from two measurement‐burst diary studies. Psychol Aging. 2009;24:828‐840.
    1. Munoz E, Sliwinski MJ, Smyth JM, Almeida DM, King HA. Intrusive thoughts mediate the association between neuroticism and cognitive function. Personal Individ Differ. 2013;55:898‐903.
    1. Hyun J, Sliwinski MJ, Smyth JM. Waking up on the wrong side of the bed: the effects of stress anticipation on working memory in daily life. J Gerontol B Psychol Sci Soc Sci. 2019;74(1):38‐46.
    1. Stawski RS, Sliwinski MJ, Smyth JM, et al. Stress‐related cognitive interference predicts cognitive function in old age. Psychol Aging. 2006;21:535‐544.
    1. Stawski RS, Cerino ES, Witzel DD, MacDonald S. Daily stress processes as contributors to and targets for promoting cognitive health in later life. Psychosom Med. 2019;81(1):81‐89. 10.1097/PSY.0000000000000643
    1. Sliwinski MJ, Smyth JM, Hofer SM, Stawski RS. Intraindividual coupling of daily stress and cognition. Psychol Aging. 2006;21:545‐557.
    1. Ferrer RA, Stanley JT, Graff K, et al. The effect of emotion on visual attention to information and decision making in the context of informed consent process for clinical trials. J Behav Decis Making. 2016;2–3:245‐253.
    1. Derry HM, Maciejewski PK, Epstein AS, et al. Associations between anxiety, poor prognosis, and accurate understanding of scan results among advanced cancer patients. J Palliat Med. 2019. 10.1089/jpm.2018.0624
    1. Gerhart J, Schmidt E, Lillis T, et al. Anger proneness and prognostic pessimism in men with prostate cancer. Am J Hosp Palliat Med. 2017;34:497‐504.
    1. Maciejewski PK, Prigerson HG. Emotional numbness modifies the effect of end‐of‐life discussions on end‐of‐life care. J Pain Symptom Manage. 2013;45:841‐847.
    1. Han P, Dieckmann NF, Holt C, Gutheil C, Peters E. Factors affecting physicians’ intentions to communicate personalized prognostic information to cancer patients at the end of life: an experimental vignette study. Med Decis Making. 2016;36:703‐713.
    1. Walczak A, Butow PN, Davidson PM, et al. Patient perspectives regarding communication about prognosis and end‐of‐life issues: how can it be optimised? Patient Educ Couns. 2013;90:307‐314.
    1. Spencer R, Nilsson M, Wright A, Pirl W, Prigerson H. Anxiety disorders in advanced cancer patients. Cancer. 2010;116:1810‐1819.
    1. Halpern MT, Urato MP, Kent EE. The health care experience of patients with cancer during the last year of life: analysis of the SEER‐CAHPS data set. Cancer. 2017;123:336‐344.
    1. You JJ, Downar J, Fowler RA, et al. Barriers to goals of care discussions with seriously Ill hospitalized patients and their families: a multicenter survey of clinicians. JAMA Intern Med. 2015;175:549‐556.
    1. Fallowfield L, Ratcliffe D, Jenkins V, Saul J. Psychiatric morbidity and its recognition by doctors in patients with cancer. Br J Cancer. 2001;84:1011‐1015.
    1. Gouveia L, Lelorain S, Brédart A, et al. Oncologists’ perception of depressive symptoms in patients with advanced cancer: accuracy and relational correlates. BMC Psychol. 2015;3:6.
    1. Rodenbach RA, Brandes K, Fiscella K, et al. Promoting end‐of‐life discussions in advanced cancer: effects of patient coaching and question prompt lists. J Clin Oncol. 2017;35:842‐851.
    1. Epstein AS, Prigerson HG, O'Reilly EM, Maciejewski PK. Discussions of life expectancy and changes in illness understanding in patients with advanced cancer. J Clin Oncol. 2016;34:2398‐2403.
    1. Epstein RM, Duberstein PR, Fenton JJ, et al. Effect of a patient‐centered communication intervention on oncologist‐patient communication, quality of life, and health care utilization in advanced cancer: the VOICE randomized clinical trial. JAMA Oncol. 2017;3:92‐100.
    1. Tulsky JA, Arnold RM, Alexander SC, et al. Enhancing communication between oncologists and patients with a computer‐based training program. Ann Intern Med. 2011;155:593‐601.
    1. Paladino J, Bernacki R, Neville BA, et al. Evaluating an intervention to improve communication between oncology clinicians and patients with life‐limiting cancer: a cluster randomized clinical trial of the serious illness care program. JAMA Oncol. 2019. 10.1001/jamaoncol.2019.0292
    1. Bernacki R, Paladino J, Neville BA, et al. Effect of the serious illness care program in outpatient oncology: a cluster randomized clinical trial. JAMA Intern Med. 2019. 10.1001/jamainternmed.2019.0077
    1. Leighl NB, Shepherd HL, Butow PN, et al. Supporting treatment decision making in advanced cancer: a randomized trial of a decision aid for patients with advanced colorectal cancer considering chemotherapy. J Clin Oncol. 2011;29:2077‐2084.
    1. Back AL, Arnold RM, Baile WF, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med. 2007;167:453‐460.
    1. Stacey D, Légaré F, Col NF, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1.
    1. Jacobs JM, Shaffer KM, Nipp RD, et al. Distress is interdependent in patients and caregivers with newly diagnosed incurable cancers. Ann Behav Med. 2017;51:519‐531.
    1. Bambauer KZ, Zhang B, Maciejewski PK, et al. Mutuality and specificity of mental disorders in advanced cancer patients and caregivers. Soc Psychiatry Psychiatr Epidemiol. 2006;41:819‐824.
    1. Nipp RD, Greer JA, El‐Jawahri A, et al. Coping and prognostic awareness in patients with advanced cancer. J Clin Oncol. 2017;35:2551‐2557.
    1. Gramling R, Stanek S, Han P, et al. Distress due to prognostic uncertainty in palliative care: frequency, distribution, and outcomes among hospitalized patients with advanced cancer. J Palliat Med. 2018;21:315‐321.

Source: PubMed

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