Ever hear the joke about “Chi Chi”? Dr. Mehmet Oz, Oprah’s health care guru, told me the joke during an interview on his show, the “Dr. Mehmet Oz Show,” on Oprah & Friends XM Radio 156. He used the joke as a metaphor for end of life care. It literally took my breath away.
The joke reads as follows: A hostile tribe captures two explorers. The tribesmen drag the explorers before their Chief.
The Chief asks the first explorer, “Death, or Chi Chi?” He obviously doesn’t want to die, so he responds, “Chi Chi!”
Three beefy tribesmen bludgeon him almost to death.
The Chief then turns to the second explorer and asks, “Death, or Chi Chi?” He doesn’t want to suffer the same fate as his partner, so he responds, “Death!”
The chief then says, “Ok, but first Chi Chi.”
When Dr. Oz told the joke, I almost fell of my chair because of the truth he spoke about medical decision making at the end of life in a US hospital setting. I’m lucky I had the wherewithal to finish the interview! The joke illustrates perfectly in metaphorical terms how a lot of people die in this country in hospitals. No one talks about it, but this is commonplace in end of life care in the US health care system.
At some point in a patient’s trajectory at the end of life, a dignified death might have been possible. Instead, like the Chief, the doctors on the patient’s healthcare “team” say, “Ok, but first Chi Chi.” In Dr. Oz’s words, they then proceed to torture the patient’s body over the course of the final two weeks of life!
In my opinion, the issues of reimbursement in health care delivery and fragmentation in patient care rear their ugly heads yet again. This time in relation to end of life care.
In the US health care system, we reimburse doctors based on the number of procedures they perform in medical care. Component management is the standard of hospital care, with “a doctor for every organ.” Consequently, in hospital care, if something happens to one organ, you see a specialist for that organ; if something happens to another organ, you see a specialist and subspecialist for that organ, and so on.
Specialists multiply on a particular case based on referral, and no doctor wants to interfere with another doctor’s ability to make money. Quite simply, doctors compete for finite reimbursement dollars.
As a result, no one looks after the whole patient!
I have witnessed time and again a typical scenario in end of life Patient Care Conferences: one doctor argues with the other doctors on the healthcare “team” about how “his” organ is in good shape— it just needs a bit more time to ‘get over the hump’. Every other specialist on the healthcare “team” argues the very same thing about their respective organs.
Meanwhile, family members remain in a state of bewilderment. No one seems willing to tell them what’s going on with the whole patient. They are left largely to their own devices to somehow piece together bits of information from each specialist and subspecialist in an attempt to get a complete picture of what’s happening to their loved one.
Time passes as doctors continue to perform their Chi Chi on the patient.
Dr. Oz and I agreed, a network of relationships with key hospital personnel (clinical and non-clinical) is the only way family members or patient advocates (caregivers) can empower themselves to think clearly and act in the best interests of the patient. Patient empowerment and caregiver issues can only be addressed through relationships and not simply by the use of electronic medical records.
What can we learn from the National Institute for Patient Rights survey of the top ten violations of patient rights? What's the take away?
We learned that, 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 seem to suffer most.
We also learned that, the number one cause of this gross and widespread violation of patient rights is fragmentation in healthcare delivery, or a lack of coordination among specialists in patient care.
Fragmentation leads to a breakdown in communication among specialists and between the "team" and patients/families, resulting in unnecessary conflict, patient rights violations, and, ultimately, medical error.
No one on the "team" seems willing to speak up on behalf of the whole patient, so patients and their families are left alone struggling to integrate their own care by piecing together bits of information from specialists in an attempt to get a complete picture of what's happening to their loved one.
So many people who took part in the survey 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.
This is simply reprehensible from an ethical point of view!
What's the chief cause of this state for affairs? One word: economics.
In this country, we reimburse doctors based on the number of procedures they perform. Quite simply, doctors compete for finite reimbursement dollars. Specialists multiply on a particular case based on referral, and no one wants to interfere with the other's ability to make money.
However, even if we managed to some how eliminate the politics and economics from the delivery of care at the bedside, we would still be stuck with the consequences of component management, with a doctor for every organ.
Paradoxically, 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 the application of science to medicine, doctors become specialists, who confine their focus to individual organs; subspecialists focus even more narrowly on the parts of organs.
Under component management, doctors have become just so many research scientists.
Component management in turn lends itself to episodic intervention. The breakdown in communications due to a lack of coordination causes anger and frustration among patients and their families.
In addition, a failure to communicate causes unnecessary conflict. It also causes significant harm when patients suffer underuse, overuse, or misuse as a result of medical error.
It seems that, unless and until hospitals and their health care professionals 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.
In the new National Institute for Patient Rights survey, conflict was also the cause of violations #6 and #7, violation of patient right to know hospital rules on charges and payment methods, and the patient 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 between “team” and patient/advocate over treatment. 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 for respondents to have expressed the desire to have known about the hospital ethics committees and their members in the event of conflict over treatment options.
Conflict between “team” and patient/advocate was the cause of #5 on The List of the latest National Institute for Patient Rights survey. 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.”
Piecing together Bits of Information
The aforementioned National Institute for Patient Rights 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.
Patient rights are under siege, as evidenced in a recent survey conducted by the National Institute for Patient Rights (NIPR). Our staff compiled the results based on responses from one-thousand randomly selected, former hospital patients who took part in the study.
In a series of postings to the NIPR blog, I will provide a summary of results from the study. The results of the survey show that, despite billions spent on advances in medical technology, patients and their families daily experience a widespread violation of patient rights “at the hospital bedside.”
Ironically, the widespread violation of patient rights by healthcare professionals may be a consequence of the success of the application of science to 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: miscommunication or a failure to communicate.