Patients’ rights are under siege, as evidenced by a recent survey by the National Institute for Patient Rights (NIPR). The NIPR staff compiled the results based on the responses of 1,000 patients who had participated in the study and who had participated in the study, selected at random. Survey results show that despite billions spent on advances in medical technology, patients experience an erosion of their rights “at the hospital bedside” on a daily basis. Ironically, it may be a consequence of the success of science in medicine.
Among those who responded to the essay questions, the following was a typical scenario. A hospital admits a loved one with “complications” (a medical euphemism for “we really don’t know everything that is going on here, but there are multiple organs involved”). As the loved one rests steady in bed, a line of doctors and nurses appears to form at the door. One after another, the doctors enter the room, make a few comments, then turn and leave. Primary care physicians refer patients to specialists who rely on subspecialists. It seems that each separate organ has its own special doctor.
In the healthcare industry, this is commonly known as “component management,” which results from a focus on treating individual organ systems in isolation from others. It has two shortcomings: (1) specialists and subspecialists tend to segregate organ systems at the expense of the whole patient; and (2) it is ineffective, because it inevitably leads to an “episodic intervention” in which, if something happens, a specialist is consulted for a particular organ system; if something else happens, see another specialist or subspecialist, and so on.
Episodic intervention inevitably leads to uncoordinated care that lacks continuity for the patient and their family. Many individual decisions in patient management by numerous specialists and subspecialists involve a fragmented delivery system. According to the findings of the NIPR study, this leads to the number one problem in contemporary healthcare delivery: lack of communication.
SHARING BOOKS OF INFORMATION
The study suggests that medical care suffers from a decided lack of coordination and cooperation among various health professionals. Survey participants invariably stated that with no one treating the entire patient and coordinating care, patients and their families are left alone to integrate their own care. According to one of the respondents, “somehow we had to put together bits of information from different doctors to try to get a complete picture of our mother’s progress.”
This can be very difficult to do in a hospital and extremely frustrating. Study participants frequently stated that no one seemed willing to tell them exactly what was going on with the entire patient. Doctors were more than willing to share information about their specialty, about what was happening with their particular organ system, but no one seemed particularly willing to say anything about how the whole patient was doing.
THE TEN RIGHTS OF THE MOST VIOLATED PATIENT
This lack of communication is responsible for the number 1 position in the list of the top ten of the rights of the most violated patients. 63% of the participants felt that health care providers most frequently violated their right to informed consent. When asked to explain, many complained of insufficient multiple diagnoses from multiple providers. Without a single and complete diagnosis, respondents felt unable to make an informed decision about appropriate treatment options.
Violation number 2 on the list is related to the same problem. Participants often complained about the way doctors presented treatment options to them. The following is a representative statement: “I felt like I was in an auto showroom and the salesperson was presenting me with a list of options for a new car.”
The number 2 most violated of the rights of the patients was the lack of respect for personal, spiritual and religious values and beliefs. Participants observed that many physicians do not seem to care about personal preferences. Consequently, they often failed to recognize the unique nature of personal lifestyles in their presentation of treatment options. To quote one respondent, “I wish my doctor had recommended a treatment option tailored to my love of the outdoors. He didn’t even ask me.”
Lack of communication was also the cause of violation number 3 of patient rights, a lack of respect for advance directives. Participants strongly complained about the way that most hospitals handle advance directives. One of the respondents stated: “The only time someone mentioned my living will was in admissions. No one ever asked me about my personal wishes again.”
Lack of communication was the cause of violation # 4. Despite HIPAA, many participants observed that providers often did not show respect for the privacy and confidentiality of their personal health information. Mobile phones were often cited as the main culprit. One of the respondents said: “A nurse leaned over to straighten a line with a cell phone in her other hand, blurting out sensitive information about a patient in the next room. It was embarrassing!”
The conflict between the “team” and the patient / advocate was the cause of number 5 on the list. Patients and their advocates have the right to know realistic care alternatives when hospital care is no longer adequate. Some participants noted that no one approached them about realistic care alternatives in the event that hospital care was no longer adequate.
Not only was there no discussion of alternative care options, but many respondents complained about how they felt when they disagreed with providers about the continued desirability of hospital care. One respondent noted: “They made us feel like we were immoral when we questioned their treatment recommendations!”
The conflict was also the cause of violations # 6 and # 7, violations of the right to know the hospital’s rules on charges and methods of payment, and the right to review the hospital bill, have the information explained and obtain a invoice copy. One interviewee said: “It was like pulling teeth to try to get an explanation for certain charges. I still don’t know why they charged me for things that I know we didn’t use.”
Under violation # 8, some participants complained of their inability to identify hospital staff who could help resolve discrepancies about billing issues or disagreements about treatment between the “team” and the patient / advocate. Patients and their advocates have the right to know about the hospital’s resources, such as patient grievance and complaint processes, patient representatives, or ethics committees. In the survey results, it was common for respondents to express a wish that they had known about the ethics committees of the hospital and its members in case of conflict over treatment options.
MEDICAL ERRORS AND RECORD KEEPING
Although it appears in n. 9, the violation of a patient / advocate’s right to know the identity and professional status of those who care for the patient contained some of the most poignant responses in our survey results. Some of the narrative statements were truly heartbreaking.
Many participants claimed to have suffered some harm as a result of medical error. Some even noted that if they had had immediate access to information about the identity and professional status of their providers, they would have had doubts about consent to treatment. One of the respondents said: “I am permanently disabled because of what a doctor did to me. I found out much later and through my lawyer the hospital knew that the doctor had caused similar problems in the past with other patients. Why didn’t they just say me ?! “
Reaching closure # 10 was the violation of the right to review medical records and receive a report of disclosures related to health information. Participants noted that they have moved frequently during their life. Consequently, they have received medical care from various providers over time. Each provider maintains their records detailing visits and treatments. The same goes for hospitals, clinics, laboratories, pharmacies, etc. One participant noted: “Like most people, I’ve moved around quite a bit. Over time, it’s easy to forget when he treated you, who treated him, and even what for.”
Respondents noted issues such as wide variation among providers in the amount of time they retained records, paper records were improperly archived or even destroyed, electronic records were lost, stolen, damaged, or vulnerable to unauthorized access, and the doctors sold their offices. One respondent stated: “I was intimidated by asking one of my doctors for a copy of my medical records. He acted as if my medical record was his property and his sole property.”
Despite billions being spent on advanced medical technologies such as drugs and devices, patients experience an erosion of their most fundamental rights on a daily basis. The patient’s self-determination rights and informed consent suffer the most.
Ironically, the widespread violation of patient rights in hospital care may be a direct consequence of the success of medicine, specifically the application of science to medicine. The scientific method lends itself to reductionism with researchers analyzing smaller and smaller parts. Likewise, in medicine, doctors become specialists who limit their attention to individual organs; the subspecialist focuses even more on the parts of the organs.
Component management leads to episodic intervention and fragmentation of care. The lack of coordination causes anger and frustration among patients and their families due to the breakdown of communications. Lack of communication can cause not only anger and frustration, but also unnecessary conflict. Conflict is expensive! Poor communications can also cause significant harm when patients experience underuse, overuse, or improper use as a result of medical error.
Until hospitals adapt to the success of science in medicine, patients and their families are likely to continue to experience one or more of the top ten violations of patient rights.