Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses

Abstract

Background: Guidelines for breaking bad news are largely directed at and validated in oncology patients, based on expert opinion, and neglect those with other diagnoses. We sought to determine whether existing guidelines for breaking bad news, particularly SPIKES, are consistent with patient preferences across patient populations. Methods: Patients from an online community responded to 5 open-ended and 11 Likert-scale questions identifying their preferences in having bad news delivered. Patient participants received a diagnosis of cancer, lupus, amyotrophic lateral sclerosis, multiple sclerosis, HIV/AIDS, or Parkinson’s disease. Additionally, we surveyed all 14 English-curriculum Canadian medical schools regarding resources used to teach breaking bad news. Results: Ten of 12 responding schools used the SPIKES model. Preferences of 1337 patients were consistent with the recommendations of SPIKES. There was one exception: Most patients disagree that empathetic physical touch is important and some described apprehension. Responses were consistent across disease states. Content analysis of 220 open-ended patient responses revealed 16 patient-important themes. Themes were largely addressed by the SPIKES guidelines, but five were not: ensuring timely follow-up is planned; offering informational sheets about the diagnosis; offering contact information of support organizations, with some patients preferring patient support groups while others preferring counselors; and conveying a sense of determination to aid the patient through the diagnosis. The four most patient-important components of SPIKES were physicians conveying empathy, taking their time, explaining the diagnosis and its implications, and asking the patient if they understand. Conclusion: SPIKES is the most commonly taught framework for breaking bad news in Canadian medical schools. This is the first work to demonstrate that the existing guidelines in breaking bad news such as SPIKES largely reflect the perspectives of many patient groups, as assessed by quantitative and qualitative measures. We highlight the most important components of SPIKES to patients and identify five additional suggestions to aid clinicians in breaking bad news.

Keywords:

• Empirical research
• interview
• mixed-methods research
• survey
• psychology

Acknowledgments

We thank all the patients (and patient partners) who took the time to fill out our surveys; Qi Zhou (McMaster) for her statistical assistance; and PatientsLikeMe for its support through the OpenResearchExchange.

Author contributions

RM and MR developed the idea of the study and designed it in partnership with GG. Data were analyzed by RM, MR, and AA. The initial draft was by RM, significantly edited by GG, and revised by MR and AA.

Conflicts of interest

Each author declares no conflict of interests: specifically, no financial relationship with organizations that would have a vested interest in our work, financial or otherwise.

Ethical approval

Ethics approval was sought and deemed unnecessary by Hamilton’s Integrated Research Ethics Board, given the low risk of harm in conducting an online survey.

Additional information

Funding

This study received funding by McMaster University’s Department of Medicine and the Canadian Institute of Health Research’s summer student grant program, which has sadly been discontinued.