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    « NKF notes passage of Affordable Care Act, says it "will benefit Americans with kidney disease" | Main | Dialysis & CKD Blog Report 3/30 »

    March 29, 2010

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    Tracy Lynn

    This, this is FABULOUS.

    somerville

    The situation for in-center hemodialysis patients trying to insist on accommodation in opposition to staff demands for compliance is even worse, since they risk branding as 'non-compliant,' which may push them off the transplant list. This is absurd in any case, since compliance with a dialysis regimen has little to do with the ability to comply with the infinitely simpler regimen of preserving a renal graft.

    I was in the hospital recently for a severe flu, and when the nurse brought my immunosuppressive dose four hours early and insisted I take it then, I had to struggle titanically to convince her that the 'hospital policy' that patients must take their medications immediately upon their provision was not appropriate in my case. The clueless intern was called in to confirm the nurse's idiocy. Hospitals excel in their inability to understand disease, and the staff then label the protesting patient as 'non-compliant' to preserve the required power differential.

    roberta mikles

    GREAT news--- and. as you all remember, Dr Berwick was, along with Dr Lucien Leape, responsible for the very famous report in 1999--"To Err is Human"

    Roberta Mikles, RN
    Patient Safety Advocate
    www.patientsafetyday.com

    roberta mikles

    Somerville, and if patients demand expected care (quality and safe) they are often labeled as 'problem patients or problem family members', 'challenging', 'troublemakers', etc. Patients are not considered as part of the team in spite of what providers would like to believe. Being negatively labeled because one expects correct practices, etc., is unacceptable but reality, unfortunately. Howeve, reality is such that patients and their loved ones can tell which staff truly care and which do not as well as which staff respect their input and which do not.

    Roberta Mikles, RN
    Patient Safety Advocate

    David L. Rosenbloom

    Unfortunately picking hospitals is a lot like picking doctors. They run the gamut from excellent to dreadful. Good hospitals have a patient's bill of rights, which one is given upon admission. It's often posted in patient rooms or waiting areas. And it's designed to empower the patient so they are not bullied or coerced into treatment they neither need, want or was not ordered by their attending physician. It's important for the patient or their caregiver to know these rights and to make a huge fuss when these rules are not followed or mistakes are made by the medical staff.

    Anyone, who has been in a hospital for a serious illness or disease has had experiences similar to the one "somerville" writes about. If the medical staff is wrong, clueless or just surly, you or your caregiver must insist on speaking to the chief of medicine or top hospital administrator. Such problems will occur again and again if they are not brought to their attention. Problem hospitals need to be exposed, and often the patient is the best party to do it. Staff often has too much invested in protecting their jobs and perks to complain to superiors. The stories I could tell about medical staff errors or misjudgments, even in good hospitals, which happened to me, would fill a book. Hospitals are dangerous places, and the only way they are going to improve is if we patients see to it.

    Peter Laird, MD

    The provision of care is greatly influenced by the experience of the staff for the type of care rendered. Specific complex treatments are the realm of specialty hospitals that have enough cases each year to maintain the needed competence. In such, by informed consent, you can learn which hospitals have the highest ratings in taking care of transplant patients as well as dialysis related issues.

    Having the vision of both a physician and a patient, one of the greatest areas of decline in the last 30 years is the myriad regulatory requirements that make the nursing staff spend more time massaging the chart than doing patient care. Indeed, for a JCAHO deficiency, it can literally cost a million dollars to fix each one. On top of this, they have at the same time reduced nursing staff and replaced them with lower level staff without the type of experience that is needed to recognize when patients are getting into trouble. This occurs in all hospitals.

    Bill Peckham

    Maybe we need apply the "fixing the broken window" approach to the hospital setting. Fixing broken windows as a broad concept was applied to policing in NY, NY. The idea in brief is: take care of the small stuff - litter, turnstile jumping in the subway - and you will have less big stuff - robberies, assaults.

    There is some empirical support for this effect of signaling. Research done in Holland showed that the presence of litter led to people littering more.

    In the hospital you'd implement a fix the broken window policy by encouraging patients who experienced what somerville describes, to make an issue of it and by administratively following up. A lack of attention to a prescription regime is actually more serious than what we might think of as the hospital's equivalent to the broken window.

    Poor infection control would be a good analog, hand washing as the hospital's broken window (though is serious in itself). If the theory was fully implemented and works in the hospital setting, then that nurse would have been identified as having practice weaknesses due to earlier mistakes and those weaknesses would have been taken seriously.

    Just as it took the police to take littering, jaywalking and turnstile jumping seriously and enforcing the law: writing tickets, taking people in; in the hospital it would take administrators and managers taking small(er) lapses seriously and enforcing policies and procedures.

    roberta mikles

    David, this is why I am deeply involved with World Patient Safety Day www.patientsafetyday.com as well as a member of the Consumer's Union Safe Patient Network of advocates. Preventable errors continue and we must, as you state, speak out.

    Peter, what you are saying about less experienced staff also happens in dialysis units as well as hospitals. Defensive documentation is alive and well as we all know just by looking at our own medical records. Shame it has come to this.

    Bill, many hospitals have initiated Patient and Family Advisory Councils which are made up of a higher percentage of patients and/or family members than staff. Staff are usually at upper level management. The patients and/or families that are involved, e.g. the one that I am connected with have experienced either preventable errors resulting in injury or death. These patients/families can bring forth valuable information to improve delivery of care. Also, those who have experienced good care are involved. Preventable errors happen in all hospitals so we have to cross our fingers that those who provide care know what they are doing.
    The hospital I am involved with is a large hospital and of course, my focus, infection control, they have, in fact, initiated a few of my suggestions. They are VERY open to that which patients have experienced and their input. They also believe in transparency and if a mistake is made they admit to such.

    Roberta Mikles, RN
    Patient Safety Advocate
    www.patientsafetyday.com

    David L. Rosenbloom

    Roberta, amen!
    Nothing teaches like experience. Last year at this time, I almost died in recovery (an internal hematoma led to severe hemorrhaging from an improperly sealed artery following a routine stent insertion in my renal artery). It was a major setback in my post-transplant recovery. Part of the problem was over medication with blood thinners. Part of the problem staff inattentiveness in recovery. I discovered the hemorrhaging and called for help. The electronic monitors did not alert the nurses. By that point my BP was 70/50 and my heart rate 30. I was very lucky.

    A few days later days later, I spent several hours talking to the hospital's risk management officer and chief recovery room nurse to insure that my experience was not repeated with others. They were not only highly apologetic and concerned, but extremely thankful that I brought my brush with death to their attention. It is probably the reason I have been asked to participate on the patient advisory panel which is now in its formative stage. This is a very good hospital, but as we all know, it can always improve.


    roberta mikles

    David, WOW. Your story is just one of MANY and sad it is....

    Recently I attended a meeting in Sacramento (I am in Calif) that had to do with patient safety laws that have been passed over the last few years and that the Calif Dept of Public Health has not fully implemented on their part. It was quite interesting as a few years ago I spoke to this group about infections being the number two killer of dialysis patients. At this meeting were similar individuals as yourself who experienced a preventable medical error. Several of these individuals have permanent harm and all are patient safety advocates. Preventable errors, as you state, happen in all hospitals regardless of how high they are rated but it is those hospitals that encourage patient/family feedback that we respect. Unfortunately dialysis providers do not include patients in unit activities.. quite unfortunate as this would probably improve delivery of care in many units.

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