Empower Patients

Violation of informed consent widespread

In law as in ethics, the right to informed consent remains the "bedrock" of the modern medicine. Two stories on hospital medical care last week show just how widespread is the violation of this basic right.

They both reported on the number one problem facing patients and their families: a failure to communicate. There can be no informed consent apart from a steady process of communication between "team" and patient.

In last Wednesday's Wall Street Journal, Laura Landro discussed the Press Ganey Associates health care satisfaction survey based on more than two millions patients at 1,576 hospitals. According to the survey, there remains a "communication disconnect" between providers and patients. Despite the prevalence of patient satisfaction surveys, hospitals have not responded well to the opportunities for improvement presented by patients and their families. Patients consistently report feeling "ill-informed" about treatments in the hospital.

The "communication disconnect" can have devastating consequences as reported in last Monday's USA Today by Liz Szabo. In "Patient, protect thyself," Ms. Szabo illustrated how miscommunication inevitably leads to medical error.

Gillian Trumbell suffered from a rare heart condition that sends her to the hospital once a month. Szabo tells the tale of how a hospital employee showed up in Gillian's room and announced he was taking her for dialysis. If not for her loud protestations, Gillian would have been treated for kidney failure.

It's a sad day for the process of informed consent when patients are placed in the position of having to scream to get the attention of providers. But, according to Szabo's excellent piece, this is precisely the advice given by leading authorities as a remedy to stem the tide of medical error. Said one, "It's your body!"

 

Josie's Continuing Legacy

If you have seen the video of Sorrel King discussing the death by medical error of her 18 month old daugther, you will not soon forget. The video has been circulated by the Josie King Foundation as part of a project called the 100,000 Lives Campaign co-sponsored by the Institute for Healthcare Improvement. The video of Sorrel is nothing if not emotionally draining. Her speech is the medical equivalent of a call to arms.

I could not help but think of Sorrel as I read in Bloglines the USA TODAY feature story, "Medical teams swoop in at family's behest." Robert Davis writes a wonderful piece about a new program that's been tested in a number of hospitals.

His article begins with a frightful account of circumstances similar in many ways to Josie's. A mother notes something gone horribly wrong with her child in hospital. In Sorrel's case, she stood by helplessly as she watched a nurse wrongfully medicate her daughter. She was utterly powerless over what was happening to Josie. She could do nothing but stand by and watch as Josie died as a result of medication error.

In Leslie Nambo's case, she watched as Isabelle, her 3 yo daughter, struggled for breath in her hospital bed at N.C. Children's Hospital in Chapel Hill. Davis reports how Leslie noted, "Her lips were whitish. Her rib cage was caving in with each breath."

This is where the similarities between the two cases ends. Leslie Nambo was not powerless. Instead, she was able to summon a "rapid-response team" by dialing an in-house 911 option! What had been only available to staff members, is now available to patients and their advocates.

Davis tells how after Nambo dialed the number within a matter of minutes Isabelle's room was filled with doctors, nurses and other specialists. They just "swooped-in."

Most compelling about Davis' article is his observation that relatives are often the first to note the warning signs of impending trouble. Hospitals are only just beginning to recognize this fact and finally do something about it.

Tami Merryman of the University of Pittsburgh Medical Center calls the in-house emergency number a "patient empowerment" strategy. Hear, hear!

Davis reports that, much "to her surprise," healthcare team members listened to Nambo's concerns and did not "shove her out of the room."

The most telling quote comes from Mary Osborne of CHI, who stated, "People die unnecessarily every single day in hospitals. The sooner we admit that, the better our patients will benefit."

(It's a safe bet in many systems, Mary'd be gone for uttering that truth!)

At the end of the article, my thoughts drifted back to Sorrel, fighting back the rage and the tears. She can take some small solace in Josie's continuing legacy. Leslie Nambo probably doesn't yet realize it, but she just may owe Isabelle's life to the work of the Josie King Foundation! 

    

"SiCKO" Doesn't Go Far Enough! (Pt.2)

A perfect storm gathers at the hospital bedside for anyone who suffers the slightest ‘complication.’ Michael Moore missed an opportunity to track this storm in “SiCKO.” While he had a visual, he neglected the infrared view.

His insights into systemic problems enabled him to detect the consequences of the ‘medical model’ on the problem of access. However, the majority of Americans face a very different sort of crisis as a result of the ‘medical model.’ It is a crisis in the delivery of their health care at the hospital bedside. This crisis ultimately leads to the gross and widespread violation of our most basic patient/caregiver right: the right to informed consent.

As in any perfect storm, a simultaneous occurrence of specific events brings this one into being at the hospital bedside. Taken individually, each event might be of little consequence, but taken together they produce a hurricane of devastating magnitude that rips through the lives of countless patients, families and caregivers.

Moore shows us in “SiCKO” that, under the ‘medical model’, we reimburse doctors in this country based on the number of procedures they perform. However, Moore neglects to document the impact this reimbursement scheme has on the delivery of health care at the hospital bedside. Specialists multiply on a particular case based on referral, with no doctor wanting to interfere with a colleague’s ability to make money.

Quite simply, doctors compete for those finite reimbursement dollars. Each needs to perform some procedure on the same patient in order to get paid.

Reimbursement works in consort with other events to create our perfect storm. Over the course of the last twenty years, component management has emerged as the standard of care in medicine, entailing ‘a doctor for every organ’.

Naturally, we want people to specialize. No one would argue that the application of science to medicine has produced enormous advances. However, we also need specialists to coordinate their efforts in the care of individual patients.

This has not happened. Instead, patients and their caregivers experience ‘episodic intervention’, another element in the perfect storm: when something happens to one organ, the patient sees a specialist in that organ system based on referral; when something happens to another organ, the patient will see another specialist and subspecialist for that organ system, and so on.

Episodic intervention leads unavoidably to fragmentation and a lack of coordination among specialists in patient care—care that lacks continuity for both patients and their caregivers.

The perfect storm gathers speed as fragmentation and a lack of coordination result in a breakdown in communication among doctors and between doctors and patients/families/caregivers. With no one to care for the whole patient, family members or caregivers are left to their own devices to somehow integrate the care of their loved ones.

They struggle against gale force winds to piece together bits of information from different specialists and subspecialists in an attempt to get a complete picture of what’s happening to their loved one.

As the hurricane makes landfall, this perfect storm leaves devastating consequences in its wake. The initial storm surge in the form of a breakdown in communication leads first to conflict.

Because doctors don’t talk to one another over patient care, they invariably end up arguing, usually in the chart. Pressure builds as the hurricane circles over the lives of patients and their caregivers. In a second storm surge, the conflict among doctors then leads to conflict between the “team” and patients/caregivers, as they attempt to brace against the gross violation of their right to informed consent.

The eyewall in the middle of our perfect storm is clearly medical error. Doctors don’t talk, they fight, and their failure to communicate causes medical error. As many as 250,000 people a year die as a consequence of medical error according to a recent study done at John Hopkins, making medical error the 3^rd leading cause of death in the US, well ahead of motor vehicle accidents.

In short, Moore missed an opportunity to track the perfect storm that exists in the delivery of health care at the hospital bedside in this country. Silos harden through a scheme for reimbursement that incentivizes component management and episodic intervention to create fragmentation and a lack of coordination, which leads to a failure to communicate, a gross violation of patient rights, conflict and, ultimately, to medical error.

At 250,000 deaths a year, this crisis clearly dwarfs the problems of wait times or the amenable mortality rate associated with a lack of access.

"SiCKO" Doesn't Go Far Enough!

The only possible authentic criticism of Michael Moore’s “SiCKO” is that the movie doesn’t go far enough from a patient rights perspective. We can’t blame Moore for this; he simply doesn’t have the requisite experience in hospital-based patient care. However, he could have used his insights into systemic problems to drill down to the hospital bedside in exposing another crisis patients/families face everyday in the delivery of their health care.

Moore makes a critical distinction between the ‘medical model’ and the ‘social model of medicine.’ Under a social model of medicine, a health care system rewards doctors based on the health of their patient populations. Every other industrialized nation uses a social model of medicine. By contrast, Moore notes the US health care system uses a ‘medical model.’ Under this regime, the system reimburses doctors based on the number of procedures they perform.

Moore uses this important distinction to underscore problems of access. When a health care system incentivizes doctors to keep a patient population healthy, patients in that population naturally have ready access. In the US, while doctors have the financial incentive to perform more procedures, insurance companies are motivated to limit the number to increase profit. Moore documents brilliantly how US citizens are caught in the middle of this epic struggle between doctors and insurance companies to make money.

Moore chooses to focus primarily on ‘denial of access’ as a consequence of the medical model. Of course, this is quite understandable given the severity of the problem. However, it would have been very easy for him to have also exposed another consequence of the ‘medical model.’

It is a crisis more deadly than the access problem. It also has a greater impact on more US citizens.

Go team

Despite billions spent on advanced medical technologies, patients and their advocates daily experience an erosion of their rights. Ironically, it may be a result of the very successes of science in medicine.

I saw an interesting press release on EurekAlert out of Indiana University. The PR reported the findings of a study done by researchers from the Indiana University School of Medicine, the Regenstrief Institute and the Richard Roudebush VA Medical Center in Indianapolis. The findings appear in the January 2007 issue of the journal of Medical Care.

What is astonishing about the study is that the findings appear self-evidient, especially for those of us who've worked at the bedside consoling and counseling patients with CHF and their families.

CHF invariably involves "complications" (a euphemism meaning we don't exactly know what all is going on here, but there's lots of organs involved). Patients and their family members are often astounded by how quickly their healthcare "team" grows when their loved one has CHF with "complications".

Here is the success of science in medicine. PCPs refer patients to specialists who rely on subspecialists. Each organ now has its own special doctor, and even parts of organs have their very own specialists. The scientific method is by nature reductionistic with analysis dividing one part from another, seemingly ad infinitum.

Component management inevitably leads to episodic intervention, which causes a fragmentation of care. A fragmentation of care entails a breakdown in communications.

The study concluded that members of the CHF "team" should work together! Active patient involvement during treatment, along with "partnership" among healthcare providers "dramatically" improves quality of care.

We "embedded" laypersons, non-medical professionals who serve patients and their families at the bedside, see daily the toll that "component management" takes on CHF patients and their advocates. In fact, we're usually left to pick up the pieces.

Component management inevitably leads to episodic intervention, which causes a fragmentation of care. A fragmentation of care entails a breakdown in communications. The failure to communicate leaves patients and their family members frustrated and angry, which contributes to less than optimal outcomes.

They are left largely on their own to integrate their own care by piecing together bits of information in an attempt to get a complete picture of how the whole patient is doing. Well, not entirely on their own. . .

Now, along comes a study that proves "team" members ought to do a better job in coordinating their activity and involving CHF patients in their own care! Wow!

If nothing else, the study does demonstrate that we remain in a transitional period in hospital medicine as we learn to adapt and adjust to the successes of science in medicine.

Gross Violations of the Patient Rights of Distinguished Veterans at Walter Reed

A lot of media folks have been calling the Institute asking for our opinion on what happened at Walter Reed Hospital. There appears to have been repeated and gross violations of the patient rights of distinguished veterans as well as the rights of their advocates.

We have issued a press release clearly stating our position on the issue. The Washington Post reporters Dana Priest and Anne Hull first broke the story last Tuesday. Their report focuses almost entirely on the conditions of the physical plant. A still more troubling piece appears in the March 8th edition of Newsweek.

Dan Ephron and Sarah Childress' piece in Newsweek reports on what amounts to repeated and gross violations of patient rights in patient care. Fundamental rights of patient self-determination and informed consent were totally disregarded by VA medical and administrative personnel on a routine basis. It's bewildering that war-injured, distinguished veterans would return home to face such mistreatment and disrespect.

There was a complete breakdown in communications, both at the clinical and adminstrative levels of hospital operations. The Ephron and Childress piece seems to single out the nursing staff (as usual!), but the violations of patient rights indicates a systemic problem implicating administrators, doctors, nurses and even the hosptial chaplaincy.

Singling out individual healthcare professionals, like individual nurses, simply will not wash. The problems of a failure to communicate, conflict between providers and patients, and medical error require a systems approach in addressing patient rights.

Values, belief and attitudes must be addressed along with behavioral competencies and organizational systems and sub-systems.

All of us in health care ethics have the utmost respect for the VA's clinical ethics function. The VA has put a lot of money where its values are in funding a top notch, comprehensive ethics program. However, it now appears to all that the VA has not adequately integrated that clinical ethics function into the operations of Walter Reed at the hospital bedside.

We have called on Congress to conduct a thorough and complete investigation into the circumstances that led to such a gross violation of patient rights. Congress should not stop with the VA.

What happened at Walter Reed is a microcosm of the state of the delivery of health care in hospitals across the United States. Fragmentation of care, uncoordinated care, invariably leads to a breakdown in communications and, eventually, to medical mistakes. A failure to communicate is violation of the most fundamental patient right: the right to informed consent.

While the violations may not be as aggregious as what occurred at Walter Reed, nonetheless patients and their families daily experience the violation of their rights at the hospital bedside in the delivery of health care.

People may say 'this could never happen to me,' but instances of the violation of patient rights like this happen everyday across this country to patients and their families. Unless and until we address the problem of miscommunication/failure to communicate, they will continue to do so.

   

Technorati Profile

New Blog of the National Institute for Patient Rights

Empower Patients is the blog of the National Institute for Patient Rights. The blog will enable daily contact between staff of the Institute and people who are interested in the protection and promotion of patient rights "at the hospital bedside."

Dr. Mark Meaney will serve as the primary editor until further notice. For information about Dr. Meaney, please click "About."

On the NIPR Blog, we will focus attention on solutions to three sorts of problems in contemporary health care delivery:

• problems of communication between providers and patients/advocates
• conflicts among providers and between the healthcare "team" and patients/advocates
• medical mistakes

The intent is to draw attention to online and offline resources to help patients and their advocates manage these three sorts of problems. Daily postings will consist of links to news items, blog postings and documents, plus commentaries where appropriate.

It is our hope that providers, patients and patient advocates will gain ready access to resources that will protect and promote patient rights "at the bedside."