A group of patients and family members who have experienced medical harm created a nationwide voluntary survey in order to more broadly and systematically capture the perspective of those most directly affected by adverse medical events.
Of the 696 participants who filled out the survey, 450 provided written narratives of their experiences. About half of these narratives were written by patients. The majority of the remaining narratives were submitted by family members who indicated their family member had died.
Here is a breakdown of 25 key study findings.
Categories of adverse events
1. The leading category of error reported by patients was failure in diagnosis and treatment. Frequent events reported in this category were a delay in diagnosis and treatment, misdiagnosis and failure to rescue a patient whose clinical condition was worsening.
2. The second most common category was surgical or procedural complications. This category included reports of wrong site surgery and foreign objects being left inside of patients.
3. Healthcare-associated infections was the third most common category, including sepsis, C. diff and urinary tract infections.
4. Medication errors were the fourth most common: 12.8 percent of patients reported receiving medications to which they had known allergies.
Provider response to adverse events
5. 90 percent of responses indicated concern over a lack of accountability on the part of providers.
6. 48 percent of responses indicated the provider insisted that care had been appropriate despite assessments from the patient and family that said otherwise.
7. 47 percent reported the provider denied responsibility.
8. 40 percent reported providers took a secretive approach to investigating medical errors and were unwilling to include the family in the investigation.
9. Of those who pursued a legal solution, 27 percent reached the settlement phase and 17 percent received compensation.
Communication failures
10. Overall, both patients and family members expressed a lack of communication with healthcare providers, reporting that their concerns were not heard or addressed.
11. Respondents reported attempts to convey the nature and severity of their current health status were disregarded.
12. In some cases, patients reported being met with hostility when they offered physicians feedback or additional information.
13. One-third of respondents reported that the healthcare providers who initially cared for them refused further communication following the adverse event.
14. Previous research has shown that patients would be less upset if the physician explained how the error occurred and apologized for the adverse event.
15. A significant number, about 13 percent, of narratives expressed a desperate need for answers that patients and families never received.
Impact of adverse events
16. More than one-third of patients reported suffering from serious psychological stress post-event.
17. For one third of patients, the perceived errors in care proved fatal.
18. One-third reported suffering significant financial loss.
19. Nearly one-third required follow up therapy or surgery.
20. More than two-thirds reported family members often experienced emotional trauma following the event.
21. Half of respondents reported their families experienced stress over caregiving, financial loss and significant lifestyle loss.
Patient suggestions for prevention:
22. The majority of respondents made suggestions that fell into three categories: use of protocols, coordination between providers and improved listening.
23. Some of respondents indicated concern over consistent use of cleaning and disinfecting products and protocol during procedures and some expressed concern over basic adherence to systems-level infection prevention measures.
24. The need for improved supervision of inexperienced physicians was a concern.
25. Patients reported a desire to be treated as experts in regards to their own experiences, but rarely found this to be the case.