Patient rights: list of the ten most violated
INTRODUCTION
Patients’ rights are under siege, as evidenced by a recent survey conducted by the National Institute for Patients’ Rights (NIPR). NIPR staff compiled the results based on responses from 1,000 randomly selected patients who participated in the study. The survey results show that despite billions spent on advances in medical technology, patients experience an erosion of their “hospital bedside” rights 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’s going on here, but multiple organs are involved”). While the loved one rests stable in bed, a line of doctors and nurses seems 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 report to 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 suffers from two shortcomings: (1) specialists and subspecialists tend to segregate organ systems at the expense of the entire patient; and (2) it is inefficient, because it inevitably leads to an “episodic intervention” where, if something happens, a specialist is seen for a particular organ system; if something else happens, then you see another specialist or subspecialist, and so on.
Episodic intervention inevitably leads to uncoordinated care that lacks continuity for the patient and family. Many individual decisions in the treatment of patients 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 health care delivery: miscommunication.
ASSEMBLE PIECES OF INFORMATION
The study suggests that health care suffers from a decided lack of coordination and cooperation among various health professionals. Survey participants consistently stated that with no one treating the entire patient and coordinating care, patients and their families are largely left alone to integrate their own care. According to one respondent, “We had to somehow piece 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 environment and extremely frustrating. Study participants frequently stated that no one seemed willing to tell them exactly what was going on with the patient as a whole. The doctors were more than willing to share information about their specialty, about exactly what was going on with their particular organ system, but no one seemed particularly willing to say anything about how the patient was doing as a whole.
THE TEN RIGHTS OF THE MOST VIOLATED PATIENTS
This lack of communication is responsible for the number 1 position in the list of the ten most violated rights of patients. 63% of participants felt that health care providers most frequently violated their right to informed consent. When asked to explain, many complained about the inadequacy of multiple diagnoses from multiple providers. Without a single, comprehensive 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. The following is a representative statement: “I felt like I was in a car showroom and the salesperson presented me with a list of options for a new car.”
The #2 most violated of patients’ rights was the lack of respect for personal, spiritual and religious values and beliefs. Participants noted 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 the #3 patient rights violation, disrespect for advance directives. Participants complained strongly about the way most hospitals handle advance directives. One respondent stated, “The only time anyone mentioned my living will was at admissions. No one ever asked me again about my personal wishes.”
Lack of communication was the cause of violation #4. Despite HIPAA, many participants noted that providers often did not show regard for the privacy and confidentiality of their personal health information. Cell phones were often cited as the main culprit. One respondent said: “A nurse leaned over me to straighten a line with a cell phone in her other hand, blurting out confidential information about a patient in the next room. It was embarrassing!”
CONFLICTS ABOUND
The conflict between the “team” and the patient/attorney was the number 5 cause on The List. Patients and their advocates have the right to know realistic care alternatives when hospital care is no longer appropriate. Some participants noted that no one ever approached them about realistic care alternatives in case hospital care was no longer appropriate.
Not only were alternative care options not discussed, but many respondents complained about how they felt when they disagreed with providers about the continued appropriateness of hospital care. One respondent noted, “They made us feel 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 about charges and methods of payment, and the right to review the hospital bill, have the information explained to you, and obtain an invoice copy. One respondent said, “It was like pulling teeth trying to get an explanation for certain charges. I still don’t know why I was charged for things I know we didn’t use.”
Under Violation #8, some participants complained about their inability to identify hospital staff who could help resolve billing issues or treatment disagreements between the “team” and the patient/advocate. Patients and their advocates have the right to know about hospital resources, such as patient complaint and grievance processes, patient representatives, or ethics committees. It was common in the survey results for respondents to express a desire to know about hospital ethics committees and their members in case of conflict over treatment options.
MEDICAL ERRORS AND RECORD KEEPING
Although listed at #9, violation of a patient/advocate’s right to know the identity and professional status of those caring 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 a medical error. Some even noted that if they had easy access to information about the identity and professional status of their providers, they would have been hesitant to consent to treatment. One respondent 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 they just didn’t tell me?!”
Coming to closure #10 was the violation of the right to review medical records and receive an accounting of disclosures regarding health information. Participants noted that they have moved frequently during their lives. Consequently, they have received care from various providers over time. Each provider maintains their records detailing visits and treatments. The same happens with 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 you were treated, who treated you, and even why.”
Respondents noted issues such as wide variation between providers in the amount of time records are retained, paper records being improperly archived or even destroyed, electronic records being lost, stolen, damaged, or vulnerable to unauthorized access , and doctors sold their practices. 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 alone.”
CONCLUSION
Despite the billions spent on advanced medical technologies such as drugs and devices, patients experience an erosion of their most fundamental rights on a daily basis. Patient self-determination rights and informed consent suffer the most.
Ironically, the widespread violation of patients’ rights in hospital care may be a direct consequence of the success of medicine, specifically the application of science to medicine. The scientific method leads to reductionism with researchers looking at smaller and smaller parts. Similarly, in medicine, doctors become specialists who limit their attention to individual organs; subspecialist focus even more closely on parts of 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 in communications. Lack of communication can cause not only anger and frustration, but also unnecessary conflict. Conflict is expensive! Communication errors can also cause significant harm when patients are underused, overused, or misused as a result of medical error.
Until hospitals adjust to the success of science in medicine, it is likely that patients and their families will continue to experience one or more of the top ten violations of patients’ rights.