Who Will Dialyze “Complex Patients”?
For years, I’ve received an occasional call or email from a hospital case manager or a patient’s loved one who was having a hard time finding a dialysis clinic that would admit someone with a trach with or without a vent. I was surprised that patients’ loved ones were having such a hard time. When I worked in dialysis, my dialysis clinic admitted a patient with a trach who required no extra time or care compared with our other dialysis patients. I don’t remember any discussion about whether to take this patient or not.
After years of getting these calls and email, in 2011, I wrote an article for Home Dialysis Central’s Life@Home to encourage people to think out of the box regarding access to dialysis for these complex patients. In particular, I suggested that dialysis decision-makers concerned about the staffing and training needed to care for patients with a trach/vent in the clinic consider training a family member or paid helper who did trach/vent care to do PD or home HD as well. It seemed to me that a home dialysis approach would primarily take two things:
A nephrologist who believed the patient was stable enough to dialyze outside an acute care setting
A clinic certified to provide home dialysis training and support, and willing to admit and train the patient/partner.
I had no idea that writing that article would open the flood gates! I got even more calls and emails from people trying to find outpatient dialysis for their loved one. When I got a call here and there over the years, I was concerned, but my advocate nature wasn’t triggered until I’d had 5 such calls or emails in less than 2 months.
One patient with a trach had been on dialysis at a local clinic and was then hospitalized for more than 30 days (receiving in-patient dialysis). A hospital nurse case manager tried to find an outpatient clinic for some time with no success—even after offering to send a nurse to a dialysis clinic to do trach care, or let the clinic train the patient/partner for home HD at the hospital. She reported that the patient’s trach did not require frequent suctioning.
A hospital nurse case manager had been trying to find a clinic for regular dialysis for patient with a trach. This patient had also been on dialysis at a local clinic prior to a lengthy hospital stay, and was refused readmission. The hospital stay was exhausting the patient’s Medicare Part A lifetime reserve days.
A patient had been in the hospital for a several months and his Medicare Part A had run out. His wife contacted me because the hospital wanted to discharge him to a nursing home several states away, which he opposed. He was hoping any local dialysis clinic would admit him, and was doing rehab exercises to be able to go home. The hospital told the couple he could have hospice at home, but the hospice agency would not pay for the vent or dialysis. The patient chose to go home, and died a few days later. Finding a dialysis clinic could have extended his life.
A patient had a healed trach that was capped and required only cleaning, which his wife did. No dialysis clinic—including the one where he’d previously received dialysis—would admit/re-admit him. The hospital was trying to discharge the patient to a long-term acute care setting that even his nephrologist said was unnecessary. All he required was a dialysis clinic that would teach the couple to do home HD.
When calls to multiple clinics, including clinics where patients had previously been treated, turned up no options, I began to wonder if dialysis companies/clinics had a blanket policy to refuse patients with trachs/vents. I remembered that some social workers had talked about “administrative discharges”—CROWNWeb instructions said to remove a patient from the clinic census when s/he was gone for more than 30 days. My contention was that discharging a patient for being away from a clinic for 30 days without the patient’s permission was an involuntary discharge. “Administrative discharges” did not meet any of the allowed reasons for involuntary discharge.
Involuntary Discharges and the ESRD Conditions for Coverage
ESRD Networks and CMS Central Office personnel in the Qualify Safety & Oversight Group (previously the Survey & Certification Group) confirmed that this practice was not allowed, and said that any clinic that involuntarily discharges an established patient must comply with the ESRD regulations.
I understand that clinics can refuse to admit/readmit a patient when those making decisions do not believe they can meet the patient’s documented medical needs as required by the Condition for Governance at 42 CFR 494.180(f)(4): “…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;
(v) Notifies the State survey agency of the involuntary transfer or discharge…”
In the four cases above, there was no indication that any of the patients had been fully assessed by the IDT or had received a 30-day letter or help to find another clinic. I don’t know if the treating physician and medical director had signed a discharge order or if these or other patients are ever informed that being away from a clinic for longer than a month could place them at risk of not having a dialysis clinic to return to. I suspect that the risk is higher for patients with “complex conditions” or those viewed as “demanding” or as “behavior problems.”
Other Pertinent Regulations
The Condition for Patients’ rights at 494.70 (a)(7) gives the patient the right to learn about all treatment options, including those not offered at the clinic.
The Condition for Patient assessment at 42 CFR 494.80(a)(9) requires the interdisciplinary team (IDT) to assess multiple things, including the patient’s “abilities, interests, preferences and goals including…the desired modality (hemodialysis or peritoneal dialysis) and setting.”
The Condition for Patient plan of care at 42 CFR 494.494.90(a)(7) states that the dialysis IDT must either identify a plan for home dialysis or document why not.
The Interpretive Guidance to the Condition for Care at home at 42 CFR 494.494.100(a) states that the clinic can train patients in their home “to meet the individual needs of the patient or helper.”
The Condition for Responsibilities of the medical director at 42 CFR 494.150(c) states that the medical director ensures the dialysis clinic has admission and other policies and that the staff and other physicians follow those policies.
Patient New to Dialysis
I reached out to an ESRD Network for help with a fifth patient not described above, whose spouse contacted me and told me she hadn’t been treated at a dialysis facility prior to starting dialysis in the hospital. A trach had been placed during a lengthy admission, and she was still in the hospital. I learned that no ESRD Network would help her, because she didn’t have a CMS 2728, since she hadn’t yet received dialysis in an outpatient clinic. This patient has full insurance from an employer group, ambulates with a walker, a surgeon has assessed her and said she is a PD candidate, and her nephrologist believes she is stable enough to be treated as an outpatient. To date, no dialysis clinic has agreed to admit her, including the clinic where her hospital nephrologist practices. What is a patient like this to do?
Advocacy & Dialysis Clinic Policies
Last month after the first four patients contacted me, I emailed Drs. Allen Nissenson and Robert Kossmann, chief medical officers of DaVita and Fresenius respectively. Both responded promptly to my emails and denied a blanket policy against admitting patients with a trach or vent. Both said their company considers each individual on a case-by-case basis. Dr. Nissenson included several other DaVita leaders on his email to me. One told me that DaVita is identifying, providing additional staff training, and approving clinics to admit “complex patients” including those with trachs/vents, LVADs, etc. Two DaVita VPs identified clinics to admit two of the patients mentioned above. One went into a rehab setting with a plan after rehab to admit the patient to a dialysis clinic. As stated before, the other patient died before a clinic could be located to admit him. I recently learned the patient new to dialysis had been treated at a clinic between hospital stays. The spouse was unsuccessful in locating any clinic to admit his wife for home training. However, the patient’s nephrologist got a dialysis clinic near the hospital to agree to admit and train the patient. That clinic is three hours from the patient’s home.
Questions for Dialysis Providers
Hearing that dialysis corporations base admissions on a case-by-case basis stimulated me to develop some questions I’d like to dialysis providers to consider and answer:
Does your company have specific criteria to screen patients with trachs (with or without a vent) to determine who can be cared for safely in one of your clinics?
Does it make a difference so far as admission/readmission if the patient doesn’t need trach care during dialysis? What documentation of this would be required?
Does your company policy allow non-clinic personnel (family or other) who have proven vent/trach competency to provide that care for an in-center patient?
ESRD regulations allow clinics to train patients for PD or home HD in their homes to better meet their needs. What criteria does your company use to decide if a stable patient with a trach/vent can have home training for PD or home HD in the clinic or the patient’s home?
Denying an established patient readmission based on inability to meet medical needs is the equivalent of involuntarily discharging that patient:
How does your company meet the requirement to provide appropriate notification to the patient, ESRD Network and state survey agency?
How does your company policy meet the requirement for dialysis staff to help these patients find another clinic?
What is your company policy related to the physician’s ethical responsibility in ending the physician-patient relationship without committing “patient abandonment,” which requires physicians to help a patient find another treating physician?
Is your company identifying and certifying clinics where there are sufficient staff who have been trained to handle patients with more complex needs?
Would you be willing to share with Medical Education Institute the names and locations of clinics that will consider accepting patients with trachs (with or without) vents for in-center or home dialysis so we can direct them or their loved ones to your clinics?
For Unstable Patients – Life & Death Decisions
I fully understand what dialysis company leaders have told me. Some patients with vents/trachs are too unstable to receive dialysis outside a nursing home or long-term acute care setting where staff are prepared to care for dialysis and for trachs/vents. Those patients’ families may need to decide where their loved one can receive the safest care. Their doctor(s) need to be honest (blunt) about the patient’s prognosis, including what quality of life the patients may be expected to have. Families may need help to talk with the patient, if competent, about his/her end of life wishes. An advance directive can make decisions easier when a patient is unable to make his/her own. As hard as it is, families may need to consider what kind of death the patient would choose and where s/he would like to die. Without dialysis, someone with kidney failure is likely to die within days, or at most, weeks. Hospice agencies can provide valuable support to patients and families in their homes or nursing homes. Medicare and other insurance usually cover hospice if the patient is terminally ill and a doctor certifies s/he is likely to die in 6 months or less. The patient and family may gain added comfort from having that time with hospice support in the home, where the patient can be surrounded by loving family, friends, and beloved pets.