Patient rights are under siege, as evidenced in a recent survey conducted by the National Institute for Patient Rights (NIPR). NIPR staff compiled the results based on responses from one-thousand randomly selected, former hospital patients who took part in the study. The results of the survey show that, despite billions spent on advances in medical technology, patients daily experience an erosion of their rights “at the hospital bedside.” Ironically, it may be a consequence of the success of science in medicine.
Among those responding to 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 all that’s going on here, but there are several organs involved”). While the loved one rests stable in bed, a line of doctors and nurses seems to form at the door. One after another, doctors enter the room, make a few comments, then turn around and exit. Primary care physicians refer patients to specialists who rely on subspecialists. It seems like each separate organ has its own special doctor.
In the health care industry, this is commonly referred to as “component management,” which results from a focus on the treatment of 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 whole patient; and (2) it is inefficient, because it inevitably leads to “episodic intervention” where if something happens, you see one specialist for a particular organ system; if something else happens, then you see another specialist or subspecialist, and so on.
Episodic intervention leads unavoidably to uncoordinated care that lacks continuity for the patient and for the patient’s family. Many individual decisions in patient treatment by numerous specialists and subspecialists entail a fragmented delivery system. According to the findings of the NIPR study, this leads to the number one problem in contemporary healthcare delivery: a failure to communicate.
PIECING TOGETHER BITS OF INFORMATION
The study suggests health care suffers from a decided lack of coordination and cooperation among diverse healthcare professionals. Participants in the survey invariably stated that, with no one to treat the entire patient and coordinate care, patients and their families are left largely on their own 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 mom’s progress.”
This can be very difficult to do in a hospital setting and extremely frustrating. Participants in the study frequently stated that no one seemed willing to tell them exactly what was going on with the whole patient. Doctors were more than willing to share information about their specialty, about precisely what was happening with their particular organ system, but no one seemed especially willing to say anything about how the entire patient was doing.
THE TOP TEN MOST VIOLATED PATIENT RIGHTS
This failure to communicate is responsible for the #1 spot on the top ten list of most violated patient rights. A full 63% of participants felt that healthcare providers most often violated their right to informed consent. When prompted to explain, many complained about the inadequacy of multiple diagnoses coming from multiple providers. Without a single, complete diagnosis, respondents felt unable to make an informed choice about appropriate treatment options.
The #2 violation on the list is related to the same problem. Participants often complained about the way in which doctors presented them with treatment options. The following is a representative statement, “I felt as if I was in automobile show room and the salesman was presenting me with a list of options for a new car.”
The #2 most violated of patient rights was a lack of respect for personal, spiritual, and religious values and beliefs. Participants observed that many doctors do not seem to care about personal preferences. Consequently, they often failed to acknowledge the unique nature of personal lifestyles in their presentation of treatment options. To quote one respondent, “I would have liked my doctor to have recommended a treatment option tailored to my love of the outdoors. He never even asked.”
A failure to communicate was also the cause of the #3 violation of patient rights, a lack of respect for advance directives. Participants complained vociferously about the way in which advance directives are handled by most hospitals. Stated one respondent, “The only time any one every mentioned my living will was at admissions. No one ever asked me again about my personal wishes.”
Miscommunication was the cause of violation #4. Despite HIPAA, many participants observed that providers often showed no regard for the privacy and confidentiality of their personal health information. Cell phones were often cited as the main culprit. Said one respondent, “A nurse bent over me to straighten out a line with a cell phone in her other hand, blurting out sensitive information about a patient in the next room. It was embarrassing!”
Conflict between “team” and patient/advocate was the cause of #5 on The List. Patients and their advocates have a right to know of realistic care alternatives when hospital care is no longer appropriate. Some participants observed that no one ever approached them about realistic care alternatives in the event that hospital care was no longer appropriate.
Not only was there no discussion of alternative care options, but many respondents complained about how they were made to feel when they disagreed with providers about the continued appropriateness of hospital care. One respondent noted, “They made us feel like we were immoral when we questioned their treatment recommendations!”
Conflict was also the cause of violations #6 and #7, violations of a right to know hospital rules on charges and payment methods, and a right to review the hospital bill, have information explained, and get a copy of the bill. Said one respondent, “It was like pulling teeth to try to get an explanation of 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 personnel who could help in resolving discrepancies over billing issues or in disagreement over treatment between “team” and patient/advocate. Patients and their advocates have a right to know of hospital resources, such as patient complaints and grievance processes, patient representatives or ethics committees. It was common in the survey results that respondents express the desire to have known about the hospital ethics committees and their members in the event of conflict over treatment options.
MEDICAL MISTAKES AND RECORD KEEPING
Although listed at #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 if they had had ready access to information about the identity and professional status of their providers, they would have had second thoughts about consenting to treatment. Said one respondent, “I am permanently disabled because of what a doctor did to me. I found out only much later and through my lawyer the hospital knew the doctor caused similar problems in the past with other patients. Why didn’t they just tell me?!”
Coming in at a close #10 was the violation of a right to review medical records and receive an accounting of disclosures regarding health information. Participants observed that they have moved frequently during their life times. Consequently, they have received medical care from various providers over time. Each provider keeps his or her records detailing visits and treatments. The same is true for hospitals, clinics, laboratories, pharmacies, and so on. One participant noted, “Like most people, I’ve moved around quite a bit. Over time, it’s easy to forget when you were treated, by whom and even for what!”
Respondents noted such problems as the wide variation among providers in the amount of time they retained records, paper records were misfiled or even destroyed, electronic records were lost, stolen, damaged or vulnerable to unauthorized access, and physicians sold their practices. Stated a respondent, “I was made to feel intimated in asking one of my doctors for a copy of my medical records. He acted like my medical record was his property and his only.”
Despite billions spent on advanced medical technologies such as drugs and devices, patients daily experience an erosion of their most fundamental rights. The rights of patient self-determination and informed consent suffer the most.
Ironically, the widespread violation of patient rights in hospital-based care may be a direct consequence of the success of medicine, specifically of 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 specialist who confine their focus to individual organs; subspecialist focus even more narrowly on the parts of organs.
Component management leads to episodic intervention and the fragmentation of care. The lack of coordination causes anger and frustration among patients and their families by the breakdown in communications. A failure to communicate may not just cause anger and frustration but also unnecessary conflict. Conflict is costly! Miscommunications can also cause significant harm when patients suffer underuse, overuse or misuse as a result of medical error.
Until hospitals adjust 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.