Routine dialysis routinely denied in Topeka

On Tuesday RenalWEB linked and Renal Business Today's Renal BizBlog commented on a Topeka Capital Journal story, Patient uses E.R. for dialysis treatments. The story relates the situation in Topeka where a person's access to dialysis has been withdrawn to the extent that dialyzing through the hospital emergency room is her only option. From the Capitol Journal:

Kitzman has been a frequent St. Francis client in two months since denied further care at the Topeka clinic where she received dialysis the past four years. Without a functioning kidney, the 59-year-old Topeka woman must undergo a procedure several times a week to remove toxic fluid from her body. Her torso swells with waste between dialysis sessions, distorting her 96-pound frame.

Her dialysis doctor of many years severed his relationship after clashing with Kitzman and her husband, Ralph Heitt, and the filing of formal complaints on Kitzman's behalf against the doctor. Kitzman's attempts to catch on at another clinic were fruitless, leaving her no option but the ER.

This is an unfortunate example of the "take it or leave it choice" most people on dialysis are given. You get the care companies are willing to provide once they meet the Standards floor of Medicare's Conditions for Coverage. Of course the Conditions for Coverage talks about patient rights but at the end of all the fine words a dialysis provider can not be compelled to treat someone. Just as a doctor can not be compelled to take you on as a patient.

You Better Behave

This case illustrates the fear people on dialysis have in mind when they have a concern about their treatment. What will happen if I bring this up? What happens when I say this or that staff person is making dangerous mistakes or the unit is sub par for whatever reason? What will happen if I take advantage of the grievance process? Forget being banished to a hospital emergency room for many people it would be bad enough if they thought that staff would now be disparaging them when they were out of ear shot.

Kieth at Renal BizBlog writes:

Patients and their families have every right to be vocal and involved in dialysis care. But this story begs one to ask what the limits are? What is the physician’s breaking point, and do patients also have just as much responsibility as the doctor in maintaining that relationship?

I would say that as it now stands the burden is on the patients to maintain the relationship. However, I think that the burden should be largely on the doctor.

This relationship that dialyzors are thrust into is very complicated. You don't want to be in a situation where the gatekeeper to you getting dialysis is being compelled against their will to treat you. I favor putting the doctor/patient relationship at the center of healthcare. I can imagine people seeing this situation as an argument against that approach. I disagree. I think the root cause of this situation and situations like it (see ESRD Networks Collaborative Project 2002 Involuntary Patient Discharge Survey (PDF link)) is that Medicare has designed a system where the payer is at the center of the dialysis healthcare system.

Ptolemaic Payer-centered Dialysis   

Because units and doctors can say to themselves I'm not getting paid to put up with X then they are free to deny their services. If the doctor/patient relationship was truly at the center of the provision of dialysis then the doctor would have an ethical obligation to sort this out or ensure that their dysfunctional relationship was replaced before is was terminated. By insisting that the payer is at the center of the provision of dialysis CMS replaced medical ethics with business ethics. That is a bad bargain; this story illustrates why.

Comments

[Peter Laird MD]

I have just read through the related story and I find this to be a truly tragic situation. Unfortunately, we do not yet have all of the facts on what transpired, but taking on "difficult" patients is part of the practice of doctors, so the fact that no other institution has not picked up her care is beyond my comprehension.

Patients whether in the middle of a law suit, complaint or other action does not mean that there is a right to deny care. Further, the hospital is obliged to offer social support services to secure the needed care. In addition, the original treating physician is under an obligation to secure care or be at risk of abandonment.

Obviously, the lack of full information makes judgements on the standard of care difficult. I look forward to following this case to see that the patient is first and foremost cared for and secondly what the final facts of the case turn out to be leaving room for the right of the physician to voice his side of all these issues.

[Peter Laird MD]

Here is an interesting link on medical abandonment. Once again, we need to see the full story from both sides, but at the outset, as a physician, it was my impression that even when dealing with a difficult patient, which does indeed happen, we still must secure medical care.

http://brainblogger.com/2008/07/27/medicine-and-the-law-part-5-abandonment/

It will be interesting to see if this patient has been abandoned or if the attempts were made to secure care. In my opinion, since the patient is only getting occasional ER treatment dialysis sessions, I await the upcoming evaluation of whether she was abandoned. As in all cases, both sides need to have the opportunity to speak and voice their case.

[Alison Hymes]

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[dyna]

to be fair, both side of stories have to be heard. as long as patient care and health is not jeopardised, health care provider also has a right to refuse as much as the patient has a right if there was reasonable cause. I think the right has to be weighted equally for patients and providers. patients mostly emphasize on their right, but often patients forget that they have resposiblities too.

[Bill Peckham]

as long as patient care and health is not jeopardized

Patient care and health is being jeopardized. Having to show uremic distress before receiving dialysis is a recipe for poor outcomes. Receiving a bare minimum dose of dialysis through an ER is not an acceptable level of care.

[Roberta Mikles]

Bill, hopefully your comments will be taken to heart by many, including providers. There are two sides to every story. I would be interested in seeing the medical record, in this case. You might,perhaps, find subjective documentation to support discharge, versus objective documentation showing the 'real' picture. (this does happen) Often our health care professionals are taught what I call 'defensive' charting/documentation. Involuntary discharges are alive and well as evidenced in surveys. I would like to see root cause analysis' conducted when there are problems between patients/families and staff/physician. Perhaps looking at the real reasons for such will shed greater light. I have reviewed surveys that had involuntary discharges and it was evident that interventions on the part of the provider were lacking, in spite of the 'patient conflict resolution' process that was developed. Of course one major problem is that if one staff has negative feelings about a patient it is quickly transferred to other staff, thereby, basically setting the patient up for failure. This contagion develops out of the unique culture that exists within the dialysis setting. (I state this after speaking with many, many patients as well as dialysis staff). The dynamics is unique unto itself. Roberta Mikles, RN Health Care Patient Advocate RMiklesRN@aol.com

[Angie]

Wow everyone is talking about this. I came here from KidneySpace who have posted and linked back to you Bill.

I know I am not familiar with the USA system as things are different in Canada but this is my take even though I see what has happened as an outrage and can imagine how sick Carole feels especially not getting regular dialysis.

Where is the renal social worker in all this? The Nephrologists have enough to deal with and when it comes to conflict with the patient or patient's family not agreeing or understanding or conflicting with the instruction of the Nephrologist then the Social Worker must step in. I know I have witnessed terrible communication and hurried diagnosis and assumptions and seemingly assuming the person on dialysis is none too smart and forgetting that patients know their bodies very well because they have lived with them all their lives, but the Social Worker has the best bet to get to the bottom of conflict like this before it rises to this level. Nephrologists are usually overworked and have so many cases to worry about and something like this needs a one on one. A person on dialysis or a family member / caregiver will be distraught and in fight mode to get to the bottom of things and therefore might come across as aggressive putting the staff on the defensive.

It is a shame but this should never have gone to this level. There lies fault on both sides and no one side can solely blame the other side in this one.