DialysisEthics has been contacted by a non-violent, dismissed patient in Texas who has been blackballed by the clinics in the patient’s area. The patient is receiving dialysis on only an emergency basis, but it looks like we are rectifying that situation. I’m posting this because many people don’t know one of the things we do - get help quickly due to our contacts in CMS, the dialysis companies, media, and the legal arena. It pains me think how many dismissed patients haven’t known DialysisEthics helps with their situation, and what the consequences have been. So I feel I ought to get the word out that we still do this sort of thing.
Hi Plugger,
Was the ESRD Network made aware of the situation? It’s their job to mediate disputes between people and their dialysis clinics. We have also, on occasion, gone to the companies that own the clinics to intervene and help when it’s clear that there was a misunderstanding. And, of course, we advocate HOME treatment for folks who are having challenges in-center. Sometimes those challenges come in when people want more control over their treatment and don’t feel safe with the care they are getting in-center.
The ESRD network has definitely been notified, we’ve gone right to the top of DaVita. If the networks did their job we wouldn’t be doing this - they don’t, so here we are. They do however fear lawyers and press, we have both in on it and advising.
Hi Plugger,
Those cases are so tragic and upsetting. I’m glad you’re finding a way to help. Nobody likes bad press. 
I guess I missed something…what exactly happened anyway?
[QUOTE=Dori Schatell;18474]Hi Plugger,
Nobody likes bad press. :-)[/QUOTE]
Or lawsuits!
As for more info, I think it would be best just to provide a link to the thread where news might show up first:
http://www.dialysisethics.org/forum/viewtopic.php?t=5603
I’ll post what I can say, when I can. But the above will probably have things first.
Hi Plugger,
I’m not sure what “law” Arlene is referring to on the Dialysis Ethics message board and she doesn’t provide information on the case, but the Federal Conditions for Coverage were published on 4/15/08 and the Interpretive Guidance clarifying the regulations was published on 10/3/08. It contains specific information on what is and is not allowed so far as involuntary discharge and what the facility must do if it wants to discharge someone involuntarily. You can find this document in full along with the original version of the Measures Assessment Tool (now on published in its 4th update). The MAT is provided to surveyors to give them a “Cliff’s Notes” to the Conditions for Patient Assessment, Plan of Care, and Quality Assessment and Performance Improvement at:
There are a 4 reasons (listed below) why a facility can involuntarily discharge a patient and in all but credible threats of physical harm (weapon), a 30-day notice must be provided.
From the regulation text (separated from disruptive/abuse behaviors that follows the interpretive guidance for this part of the regulation )
I Standard: Involuntary discharge and transfer policies and procedures. The governing body must ensure that all staff follow the facility’s patient discharge and transfer policies and procedures.
The medical director ensures that no patient is discharged or transferred from the facility unless –
(1) The patient or payer no longer reimburses the facility for the ordered services;
(2) The facility ceases to operate;
(3) The transfer is necessary for the patient’s welfare because the facility can no longer meet the patient’s documented medical needs; or
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From the Interpretive Guidance to the above reg text (V766):
[I]Involuntary discharge or transfer should be rare and preceded by demonstrated effort on the part of the interdisciplinary team to address the problem in a mutually beneficial way. The facility must have and follow written policies and procedures for involuntary discharge and transfer.
If any patients have been involuntarily discharged or transferred since the latter of either the effective date of these rules (October 14, 2008) or the facility’s last survey, surveyors will review those patients’ medical records to ensure compliance with these regulations and facility policy. See also requirements under Conditions for Patients’ rights at V468 and V469.
The medical director must be informed of and approve any involuntary discharge or transfer of a patient. A facility may involuntarily discharge or transfer a patient only for those reasons listed here and at V767. The medical director must ensure that the reasons for any involuntary discharge or transfer are consistent with this requirement.
If a facility involuntarily discharges or transfers a patient for nonpayment of fees, there must be evidence in the patient’s medical record that the facility staff (e.g., billing personnel, financial counselor, social worker) made good faith efforts to help the patient resolve nonpayment issues.
In the event a facility ceases to operate, the governing body must notify CMS, the State survey agency, and the applicable ESRD Network. The facility’s interdisciplinary team must assist patients to obtain dialysis in other facilities.
If the discharge or transfer is necessary for the patient’s welfare, the patient’s medical record must include documentation of the medical need and reasons why the facility can no longer meet that need.
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From the regulation text (disruptive/abusive behavior)
I The facility has reassessed the patient and determined that the patient’s behavior is disruptive and abusive to the extent that the delivery of care to the patient or the ability of the facility to operate effectively is seriously impaired, in which case the medical director ensures that the patient’s interdisciplinary team—
(i) Documents the reassessments, ongoing problems(s), and efforts made to resolve the problem(s), and enters this documentation into the patient’s medical record;
(ii) Provides the patient and the local ESRD Network with a 30-day notice of the planned discharge;
(iii) Obtains a written physician’s order that must be signed by both the medical director and the patient’s attending physician concurring with the patient’s discharge or transfer from the facility; (iv) Contacts another facility, attempts to place the patient there, and documents that effort; and
(v) Notifies the State survey agency of the involuntary transfer or discharge.
(5) In the case of immediate severe threats to the health and safety of others, the facility may utilize an abbreviated involuntary discharge procedure.
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From the Interpretive Guidance to the above reg text (V767):
[I]Patients should not be discharged for failure to comply with facility policy unless the violation adversely affects clinic operations (e.g., violating facility rules for eating during dialysis should not warrant involuntary discharge). Patients should not be discharged for shortened or missed treatments unless this behavior has a significant adverse affect on other patients’ treatment schedules. A facility may evaluate the patient (who shortens or misses treatments) for any psychosocial factors that may contribute to shortening or missing treatments; for home dialysis; or, as a last resort to avoid inconveniencing other patients, may alter the patient’s treatment schedule or shorten treatment times for patients who persistently arrive late… Patients should not be discharged for failure to reach facility-set goals for clinical outcomes. Facilities are not penalized if a patient or patients do not reach the expected targets if the plan of care developed by the IDT is individualized, addresses barriers to meeting the targets, and has been implemented and revised as indicated.
In the event facility staff members believe the patient may have to be involuntarily discharged, the interdisciplinary team must reassess the patient with an intent to identify any potential action or plan that could prevent the need to discharge or transfer the patient involuntarily. The reassessment must focus on identifying the root causes of the disruptive or abusive behavior and result in a plan of care aimed at addressing those causes and resolving unacceptable behavior.
Evidence must be on file to substantiate that the patient received notification at least 30 days prior to involuntary discharge or transfer and that the ESRD Network was also notified at that time. While the early notice to the State agency is not required, facilities may choose to notify the patient, Network and the State agency at the same time. A 30-day notice is not required in the case of imminent severe threat to safety of other patients or staff. The State agency and Network would need to be notified immediately if the use of the abbreviated involuntary discharge procedure is necessary.
There must be a written order in the patient’s medical record, signed by the attending physician and the medical director for the facility to involuntarily discharge or transfer a patient. If the reason for discharge is the physician’s determination to no longer care for a particular patient and there is no other physician on staff available or willing to accept the patient, generally the state practice boards for physicians require the patient be given some notice to avoid a charge of patient abandonment. The facility would need to follow this regulation as to reassessment, 30 day notice, attempts for placement, etc. during the physician’s period of notice to the patient.
Because the goal of contacting another dialysis facility is for continuity of care, the HIPAA privacy rule does not require patient consent to contact that other dialysis facility. However, it does limit sharing of protected health information to medical records requested by the other provider and prohibits sharing information obtained through hearsay. Good faith efforts should be made to find the closest facility to the patient’s residence that will accept the patient in transfer. The applicable patient’s medical record must include evidence of those placement efforts.
An “immediate severe threat” is considered to be a threat of physical harm. For example, if a patient has a gun or a knife or is making credible threats of physical harm, this would be considered an “immediate severe threat.” An angry verbal outburst or verbal abuse is not considered to be an immediate severe threat. In instances of an immediate severe threat, facility staff may utilize “abbreviated” involuntary discharge or transfer procedures. These abbreviated procedures may include taking immediate protective actions, such as calling “911” and asking for police assistance. In this scenario, there may not be time or opportunity for reassessment, intervention, or contact with another facility for possible transfer. After the emergency is addressed and staff and other patients are safe, staff must notify the patient’s physician and the medical director of these events, notify the State agency and ESRD Network of the involuntary discharge, and document this contact and the exact nature of the “immediate severe threat” in the applicable patient’s medical record.
At the time of publication of these rules, each facility had received a copy of an interactive program developed by the ESRD Networks on Decreasing Dialysis Patient Provider Conflict (DPC) that addresses proactive techniques to resolve such issues before progression to involuntary discharge.
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In addition to these two V-tags, you might want to read the Condition on Patients’ Rights which also addresses the rights of patients to file internal (within the clinic/corporation) and external grievances (with the State Survey Agency and the ESRD Network) without fear of reprisal or denial of services (V467), right to know discharge/transfer policies (V468), right to receive 30-day notice of discharge except in case of immediate severe threat (V469), requirement that all facilities post rights in a common area (V470).
Is there anything in the Federal Conditions for Coverage stating what rights patients have if they have unprofessional acting and /or inadequately educated dialysis professionals? I’m guessing there’s nothing, but there should be.
When the proposed regulation was published, there was a 3-month comment period. Hundreds of comments were received by patients, family members, and professionals. A summary of the comments and CMS’ response to them are published in the preamble to the regulation which is published with the regulation text (no interpretive guidance) in the Federal Register. These topics were addressed.
Although you can get an idea what is required by reading the regulation, you might want to know what surveyors look for when they visit dialysis clinics. Therefore, I strongly recommend that all dialysis patients read the Interpretive Guidance which is 299 pages long (typed). The link to the document is in my last posting. The document appears longer because it includes a letter to State Survey Agencies and the MAT. There is a table of contents. The Condition for Patients’ Rights is from 175-185. What follows are some of the key sections that address Jane’s question:
Regulation text:
I Standard: Patients’ rights.
The patient has the right to—
(1) Respect, dignity, and recognition of his or her individuality and personal needs, and sensitivity to his or her psychological needs and ability to cope with ESRD;
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Interpretive Guidance (V452)
[I]In all verbal and nonverbal communications, patients must be treated with respect, dignity, and sensitivity. Interactions among patients, staff, and others should demonstrate observance of patients’ rights and consideration of a patient’s physical condition, emotional state, and cultural background. Patients must be able to question procedures or staff performance (e.g., whether or not a staff member washed their hands prior to initiating the patient’s treatment) without fear of reprisal.
Rude, abrupt or demeaning behavior, physical or mental harassment, punishment, or the use of restraints or involuntary seclusion are not acceptable and must not be imposed for purposes of discipline or staff convenience. Rude or demeaning behavior would include name calling. Harassment would include, but is not limited to, sexual harassment.
Physical or chemical restraints may be imposed only upon the written, specific order of a physician or other licensed practitioner permitted by the State and facility to order restraints. In a dialysis unit, it may be appropriate to use physical restraints to keep a patient from dislodging or pulling out needles or to prevent a patient from falling out of a dialysis chair. The need for restraints should be reassessed at each treatment. If restraints are used, staff must document what, when, how, and why restraints are needed. If restraints are used routinely on a patient, staff should address this practice in the patient’s plan of care. A restraint does not include a personal escort or orthopedic device, surgical dressing or bandage, a protective helmet, or other method to hold a patient while conducting routine aspects of the dialysis treatment.
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There are other sections that address staffing and training, including these:
V757-761 address this by regulation and interpretive guidance. The description is on pages numbered 289-290 of the document. I’ve included only the regulation text below. The interpretive guidance is too lengthy to post in my opinion.
Regulation text:
b) Standard: Adequate number of qualified and trained staff. The governing body or designated person responsible must ensure that—
(1) An adequate number of qualified personnel are present whenever patients are undergoing dialysis so that the patient/staff ratio is appropriate to the level of dialysis care given and meets the needs of patients; and (IG at V757)
The registered nurse, social worker and dietitian members of the interdisciplinary team are available to meet patient clinical needs; (IG at V758)
I A registered nurse, who is responsible for the nursing care provided, is present in the facility at all times that in-center dialysis patients are being treated;[/I] (IG at V759)
I All staff, including the medical director, have appropriate orientation to the facility and their work responsibilities; and [/I](IG at V760)
I All employees have an opportunity for continuing education and related development activities; [/I](IG at V761)
The new CfC places the responsibility for staff education, training, and performance under the responsibilities of the medical director and refers to other areas (called Conditions) where specific education or training is required including the Conditions for Infection Control (V132), Water and Dialysate Quality (V260), Reuse (V308, 309), Physical Environment (V409-411), Personnel Qualifications (V693, 694, 696), and Governance (V760).
Speaking of the Condition for Personnel Qualifications, the new CfC require patient care technicians to have completed a training program approved by the medical director and to be certified by a national (or state, if comparable) organization by 18 months after their hire date. If they were working in dialysis when the regulations took effect on 10/14/08, they have until 4/15/2010 to be certified.
There’s also an entire Condition for Care at Home on pages 222 through 245.
[QUOTE=Beth Witten MSW ACSW;18478]Hi Plugger,
I’m not sure what “law” Arlene is referring to on the Dialysis Ethics message board.
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Arlene is just emphasizing the point a person or two we are dealing with is being most uncooperative in giving us info. One thing I’m seeing with all this mess is there is a difference between what is ‘current’ and what is ‘official’.
And thanks for posting all the info!
The regulations are both current and official. I don’t know what information Arlene is trying to obtain and whether the information she is seeking is from the dialysis clinic or the physician. If from the physician, HIPAA governs the release of information. If from the dialysis clinic, HIPAA applies, but so does the ESRD regulation. Under the CfC, patients have the right to "Receive all information in a way that he or she can understand. They also have the right to “Privacy and confidentiality in personal medical records.”
The Interpretive Guidance states at V455:
[I]Patients should be able to expect the facility to maintain confidentiality of their medical record information. Patients’ health records must be protected from casual access. Hard copy medical records should be stored in a secure location when not in use. Computer screens containing patient information should not be left open and unattended with patient specific information on display and computerized systems should require passwords and permissions to access medical records.
The facility must inform patients of their privacy rights under the Health Insurance Portability and Accountability Act (HIPAA).
A signed release is not required by HIPAA to share protected health information for continuity of care, such as but not limited to providing emergency care or contacting other dialysis facilities as a part of the protocol for involuntary discharge or termination of treatment or when asking the police to help locate a patient so he/she can receive dialysis.
Patients have the right to read their own medical record, have corrections made to that record, and to have a copy of their record for which a nominal fee may be charged. The facility must actively seek to honor patients’ requests to have a copy of their medical record as quickly as its recordkeeping system permits. Under HIPAA, reasons why a patient or his/her designee would not have the right to review his/her record include:
- The patient is an inmate of a correctional facility and access could jeopardize the health, safety, security, custody or rehabilitation of the patient, other inmates, or the safety of any officer, employee or other correctional system employee, including the transporter;
- The patient is participating in a research project;
- Access to the medical record would reveal a confidential source;
- Access to the medical record could endanger the life or physical safety of another;
- Access to the medical record by the patient’s authorized representative is likely to cause substantial harm to patient or another.
Confidential treatment and release of patient medical record information is also addressed in the Condition for Medical records at V727 and V728.
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Not knowing any of the facts of the complaint, I can’t offer any specific suggestions. Over time I’ve learned that when I’m in conflict with someone else, the angrier/pushier I get in a situation, the more the other person resists and the harder he/she pushes back. Is there no way to find common ground and/or no room for compromise to resolve the complaint in the best interest of the patient(s)?
Re the Patients’ Rights sections having to do with abusive, undereducated or unprofessional acting dialysis professionals, is this new or was most of it already in place? If it is new that is great, but like I have always said, it has no teeth without E.N.F.O.R.C.E.M.E.N.T. Sooooooo, has anything changed in the enforcement dept.? Professionals can stall and delay, but patients must go to dialysis the next day to preserve their lives.
Re confidentiality, I have often had difficulty with my nurses or dietitians when I ask them for a copy of my labs. They have stalled me for days. If someone like the receptionist is willing to give me a copy with my permission, can that be done?
I believe the new regulations and Interpretive Guidance are more specific than the old CfC and IGs.
HIPAA requires that healthcare providers give you a copy of your medical records on request. They can take 30 days (longer if they explain why) to provide them and can charge you for the cost of copying…
http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/consumer_rights.pdf
Because timeliness is important with lab tests, requiring a patient to wait 30 days would limit their ability to participate actively in their care. In every dialysis clinic where I have worked, providing lab sheets or a “report card” of key test results was common practice. I knew patients who created electronic files (Excel or other) to track and trend their labs so they could take as much control as possible over their health. I can’t imagine what rationale a clinic could use for refusing to provide patients their lab test results.
If you have requested your records and believe that your attempts have been stymied, I’d encourage you to talk with your doctor, the medical director and/or the facility manager. Ask for specific medical records and state that having these records will help you be an active participant in your care and find out from him/her who you should ask for this information when you want it. If your request is denied, you have the right to contact the State Survey Agency and complain that your dialysis facility is violating your right under the CfC to participate actively in your care. You could also file a complaint with the Office of Civil Rights of the Dept. of HHS as described in the fact sheet linked above.
Regulation text
I Be informed about and participate, if desired, in all aspects of his or her care, and be informed of the right to refuse treatment, to discontinue treatment, and to refuse to participate in experimental research;
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Interpretive Guidance at V456:
[I]Patients have the right to know about and participate in their care and treatment to the extent they desire. Self-cannulation may be performed by the patient in any facility upon receiving appropriate training and demonstrating competence, should they so choose. The facility must encourage patient participation in care planning. Examples of ways to promote this participation include, but are not limited to, offering the patient the option to participate in interdisciplinary team care planning or to attend a planning meeting in-person or by teleconference from home. “Chair-side” review of the plan of care is also acceptable, if sufficient privacy can be provided. Patients also have the right to accept or decline to participate in their care.
Patients must be notified of changes to their dialysis prescription and the reason for those changes. Patients should be encouraged to disclose any concerns they have with the proposed changes. Patients have the right to refuse the change without fear of discharge.
Patients have the right to refuse any aspect of treatment, to refuse to participate in experimental research, and to discontinue their dialysis treatments completely.
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Enforcement is by the State Survey Agencies. As I’ve said before, enforcement depends on a several factors:
- How much funding has the State Survey Agency received and how much competition is there for the funding for surveying of provider types that are mandated to be surveyed at set intervals? There is no law that requires the frequency of ESRD facilities (there is a law for frequency of nursing home and home health surveys). CMS encourages State Survey Agencies to survey dialysis facilities every 3-4 years, but without a law, there is no mandate and some states have facilities that have not been surveyed in many years.
- Have staff or patients complained about violations of the regulations – if so, State Survey Agencies investigate credible complaints? Are patients (or staff) complaining when they see violations or are they keeping their mouths shut out of fear of reprisal? The regulations prevent reprisal or that would be grounds for another complaint.
- Have the State surveyors received ESRD training? Multiple trainings are provided every year. Managers in State Survey Agencies choose who can attend. Some states choose those to attend ESRD trainings based on which surveyors do dialysis surveys while others choose those to attend ESRD trainings based on who hasn’t been to a training
even if that person has no experience surveying dialysis clinics. - How experienced are State surveyors in doing surveys of dialysis clinics? Some States designate specific surveyors to survey dialysis facilities. Other states expect every surveyor to survey every provider type. I would think it would be easier to stay current on regulations if you surveyed certain provider types.
There are several areas where patient advocacy could help to ensure enforcement of the regulations.
Re enforcement, I think it is very difficult for anyone who is not the dialysis patient requiring ongoing life-sustaining medical care to understand what is at stake for patients if they have a complaint and speak up. As I’ve said numerous times, more then anything else, patients must have immunity and protections in order to report clinic problems. Until they have that, they will never feel free to file complaints in the current system. I am not speaking of every patient, but most. With protections in place, patients would come out of the wood works to report what goes on in their clinics! It’s an unfair playing field until then.
Patients can file complaints anonymously with the State survey agency without giving their name or they can file the complaint confidentially providing contact information if the surveyor needs more information. Surveyors are to never divulge to the clinic staff who filed the complaint or if they do, there will be consequences for them. The disadvantage to filing anonymously is that the surveyor can’t call the patient back to find out more information as part of the investigation and can’t let the patient who complained know the results of the investigation. If filing confidentially the patient can explain the complaint and clarify it as much as needed to allow the surveyor to review medical records, observe care and/or interview other patients and staff in the clinic to fully investigate the patient’s complaint. When a surveyor surveys a clinic on a complaint, the surveyor can look at anything else that he/she chooses and they often find other deficiencies.
BTW, when pulling charts, surveyors pull 10% of charts at random except in small clinics where they pull at least 5. The surveyor investigating a complaint would purposely pull the chart of the confidential complainant without the clinic ever knowing who lodged the complaint. The surveyor would not be able to pull the chart of an anonymous complainant. Patients aren’t the only ones who can file complaints. Staff can file anonymous or confidential complaints too.
From my conversations with staff, they are just as afraid of retribution as patients if they complain. Instead of their life being at risk, they worry about jeopardizing their livelihood. This is why the system is set up to allow complainants to file anonymous or confidential complaints with State survey agencies.
Networks can investigate complaints too. I believe patients need to tell Networks they want the complaint to be anonymous or confidential. Networks can investigate complaints too. Networks can involve the State survey agency in a complaint when they feel it’s necessary. Whenever the clinic wants to involuntarily discharge a patient, it must notify both the State and the ESRD Network and they will review what happened and determine if the involuntary discharge is appropriate or not.
Patients’ rights should be posted alerting patients of how they can file complaints. A patient can file a complaint internally within the clinic/corporation but this is not required before filing a complaint with the Network or State survey agency. It’s my understanding that patient complaints have led to findings of patients’ rights and other violations in dialysis clinics.
[QUOTE=Beth Witten MSW ACSW;18488]The regulations are both current and official. I don’t know what information Arlene is trying to obtain and whether the information she is seeking is from the dialysis clinic or the physician. If from the physician, HIPAA governs the release of information. If from the dialysis clinic, HIPAA applies, but so does the ESRD regulation. Under the CfC, patients have the right to "Receive all information in a way that he or she can understand. They also have the right to “Privacy and confidentiality in personal medical records.”
[/QUOTE]
Arlene was trying to get the info from CMS if I recall correctly.
Anyway, before a lot of this info was posted I did try to see if I could find the regs myself, it sure wasn’t easy - I could see a lot of people giving up. I did mention earlier though that there might be a difference between ‘current’ and ‘official’ when I saw the following:
"e-CFR Data is current as of September 3, 2009
USER NOTICE
The Electronic Code of Federal Regulations (e-CFR) is a currently updated version of the Code of Federal Regulations (CFR). It is not an official legal edition of the CFR."
http://ecfr.gpoaccess.gov/cgi/t/text/text-idx?c=ecfr&tpl=%2Findex.tpl
Sounds like they could do some tweaking of the regs here? But it wouldn’t be official yet? I don’t know.
The e-CFR is not “official” because it’s not the official version of the Federal Register which is either available in print or PDF. Regulations can be proposed or final, but it will say on the Federal Register document which they are.
The easiest way to find the current dialysis regulations is to go to the CMS website and look for the ESRD Center. You can find this from www.cms.hhs.gov and scroll down the page to find ESRD Center with other “Centers.” When you go to the ESRD Center, the first item linked on that page is the current and official Conditions for Coverage in PDF. The regulations posted say 42 CFR Parts 405, 410, 413 et al. Medicare and Medicaid Programs; Conditions for Coverage for End-Stage Renal Disease Facilities; Final Rule on the cover of the PDF of the Federal Register. Being the Final Rule means these regulations are official and current.
Here’s the link directly to the PDF of the final CfC which was published on 4/15/08. Most provisions were effective 10/14/08. If you read the regulations, they will tell you which provisions have come into effect later or will take effect in the future.
New here and new to HD. What do you mean by dismissed patient? Are you saying the patient has been refused treatment?