Who Will Dialyze “Complex Patients”?

This blog post was made by Beth Witten, MSW, ACSW, LSCSW on May 30, 2019.
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:

  1. A nephrologist who believed the patient was stable enough to dialyze outside an acute care setting

  2. 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.

The Cases

  • 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.

Comments

  • Trish Mitchell

    Feb 13, 2024 11:57 PM

    My husband has this very issue recently and is not a candidate for home dialysis.I am not understanding why they don't take Trach patients. So if they can't get home dialysis it is time okay just to allow them to die. I am outraged.
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  • Sonya Wiley

    Jan 03, 2024 11:55 PM

    My mom has been in the hospital since 3/2/2023, during this time she ended up with a trach, on a vent and dialysis. We are having a hard time getting her home dialysis as no one takes her insurance along with the other issues she has. SNF is not an option and the closest one that they are trying to send her to is 4 hours away. Leaving her at a SNF and 4 hours away is completely ruled out. I read earlier that the following nephrologist could suggest the family train for PD. Family has been with patient around the clock. Patient is only on vent at night (12 am-5 am) Do you have any suggestions on what we can do? We are in Texas and if we could get training for PD for her, we are more than willing to do so but that has never been mentioned. She is not able to get out of bed as she has not walked in 10 months. I would greatly appreciate any feedback or any recommendations. There were two dialysis companies that accepted her but then they denied her. We are currently in the Rockwall area looking for what we can do to get her out of the hospital and home.
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  • Desirae Edwards

    Sep 05, 2023 9:16 PM

    Hi Beth, I hope you see this. My mother has been on hemodialysis for a few months now at a acute care facility. She is in talks of being discharged but we've run into a road block. She has a trach due to paralyzed vocal chords that we are hopeful to have looked at by an ENT once discharged but until then the trach remains. She isn't on a ventilator but she does require oxygen supplementation. The local folks here at Fresenius have been transparent that they've never trained a trach patient for home dialysis before and it may not be possible. Her case manager even mentioned having to send trach/dialysis patients to different states. This would be devastating to my mom. And for me. I'm reaching out in hopes that you could point me in the direction of places that accept home dialysis patients for training in different states. We don't want to move as we've both lived here in Biloxi, MS our whole lives. However, we will move if it means that it will allow her to receive home dialysis and not have to enter a nursing facility.

    I'm grateful for any advice.
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    • Beth Witten

      Sep 16, 2023 11:33 PM

      I'm sorry I didn't respond sooner. As you've probably guessed by now, dialysis clinics are reluctant to admit trach patients because RNs who may have received training on trachs in nursing school may not have recent experience and it scares them. Also, dialysis is having a hard time hiring nurses and techs so staffing is tight in dialysis clinics. When your mom is discharged from the hospital, do you plan to take her home with you and to be her dialysis care partner? Has the respiratory therapist trained you to do your mother's trach care. If not, I'd suggest you ask to be trained to do that. Having that training would be a step in the right direction to advocate with the dialysis clinic to make your mom their first home trained trach patient. If you're planning to be her care partner, the home training nurse would need train you to help with her dialysis so if you're already trained to do her trach care if she needs it while in training, the nurse would not have to do anything other than what s/he does with other patients. The nurse would have to train you to do usual care and to handle any emergencies related to your mom's dialysis. I gather that she's on hemodialysis. Hemodialysis training takes 3 or more weeks. If she could do peritoneal dialysis, she would need a PD catheter placed and she could get the catheter placed while she's in the hospital and train after it's healed. The dialysis regulations allow patients to be trained in their home if the clinic would prefer to do that so they don't have a trach patient in the clinic at risk of getting or spreading infection. I assume she is being followed by a nephrologist in the hospital. I'm curious why your mom can't have an ENT consult while she's in the hospital. If she could get treatment to allow the trach to be capped, there might be more clinics that will admit her. The Medicare website allows you to search for providers, including dialysis clinics. When you search for Biloxi, it finds 10 clinics within 25 miles of Biloxi. When you filter for services (home training or PD training), it lists 4 and 3 (2 DaVita and 1 Fresenius) are less than 5 miles from Biloxi. I wish I had a list of clinics that would admit trach patients. Doctors can make more headway than anyone else in getting a colleague to admit a patient s/he believes is stable enough to do outpatient or home dialysis. Ask the nephrologist if s/he would go to bat for your mom with any of these clinics that train patients for home dialysis.
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      • Desirae Edwards

        Jan 26, 2024 9:35 PM

        Hi, Beth. Me again. We ended up being transferred out to IL. She's in a SNF but I'm trying desperately to get her on home dialysis. I've moved to be with her, but am still running into road blocks due to her trach. I know you probably have a ton of people asking things of you all of the time. But do you have any contacts/suggestions that could help me get her home and back to a sense of normalcy? I've rearranged my life/work to be able to be her care partner at home. I just can't seem to get her home with her trach/dialysis combo. Thank you so much.
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  • Debra Bailey

    Feb 09, 2023 3:10 AM

    My husband has an LVAD, trac, and ventilator. He has been in the hospital since May 2022 today is February 8, 2023. The hospital staff has been looking for an out patient dialysis center since October 2022.
    I agreed to train so I can get him out of the hospital. Prior to him going into the hospital I performed PD dialysis at home everyday. I am also trained for trac care and ventilator. The ventilator is only used at night.

    Fresenius said they would take him and train me on hemodialysis since he is no longer a candidate for PD. However, they are requiring a CNA be present for the training. The Case Worker cannot find a CNA to accompany us for training. The companies that were willing to entertain the idea wanted long term assignments or just didn’t have the staffing.

    So, my husband is being held hostage in the hospital. He is in ICU waiting for a CNA so he can leave the hospital. I need help, let me know what I do.
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    • Beth Witten

      Feb 09, 2023 11:00 PM

      I'm a social worker, not a doctor so I suggest you run my ideas by your husband's doctor(s). First, where do you live? It's hard to know how suggest resources without knowing that.

      You said you were trained and did your husband's PD when he used a cycler. You say your husband is no longer a candidate for PD. I'm wondering if you believe that because of the LVAD and vent/trach or whether the doctors have said that. Research has found that PD can be used successfully with patients with LVADs. In fact, PD has fewer problems than HD according to the articles I've linked to below.
      https://www.kidneymedicinejournal.org/article/S2590-0595(21)00025-X/fulltext
      https://pubmed.ncbi.nlm.nih.gov/29249390/

      This article discusses all types of dialysis and says that with people requiring ventilators, the risk of bleeding, low BP, and death are lower with PD than with intermittent HD.
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8162503/pdf/cc9-3-e0399.pdf

      It might be worth showing these articles to the doctors and asking them to reconsider.

      Assuming they have a good reason why your husband has to do HD, I don't understand why Fresenius is requiring a CNA to be there when you're the one who will be training to be your husband's care partner for home HD. Do they expect you to pay a dialysis tech or CNA to be there for every dialysis session? Are they requiring this to reduce their legal liability in case something unforeseen happens? If they don't trust you to be his care partner after you've been trained on the LVAD, the vent, the trach, and PD, then I'd check to see if your insurance will cover staff assisted home dialysis. This is not widely available probably because Medicare doesn't cover it. However, it may be covered by a job-based insurance plan.

      Have the doctors talked with you and your husband about whether he might be a candidate for a multi-organ transplant? When someone needs multiple organs, waiting times are typically lower. You can find multiple multi-organ transplant programs by looking on Google with the search term "multi-organ transplant."
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  • Patricia Logan Harrison

    Feb 01, 2023 8:56 AM

    I have been attempting to help a family to obtain outpatient dialysis for a young man who has Down Syndrome and has now been in the hospital for more than 500 days after being diagnosed with covid. He did not have a trach before covid. The hospital tells us that there is not a single outpatient facility in the state that will provide dialysis. There is also not a nursing facility in the state (South Carolina) that will accept a patient who has a trach and needs dialysis. The hospital wants to send him to another state.
    How can a state Medicaid agency fail to provide care for a person because he has a trach? This person lived in a group home successfully for years before he contracted covid in 2020.

    Is this all about money? It is costing more than $800,000 a year to provide care for him in the hospital. His parents are elderly and have their own health issues and cannot provide care for him at home.

    Has anyone done an ADA lawsuit or an action alleging violation of the Medicaid Act in other states? The state received billions of dollars in covid relief money, but they are using it for other purposes.

    This seems to me to violate the state's obligation under Medicaid to provide medically necessary services.
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    • Beth Witten

      Feb 01, 2023 10:23 PM

      Where is the patient located? What is the patient's nephrologist doing to try to help the family place this patient. Dialysis clinic medical directors need a referral from the patient's treating nephrologist along with medical records to evaluate if the clinic is able to provide the care the patient needs. In a previous response to a comment, I provided the number for DaVita Guest Services. They may be able to help find specialized care for a patient like this. I suspect the other large dialysis organization, Fresenius, would do this too. The phone number to provide care at a Fresenius clinic is 888-373-1470.

      Some things that might help:
      - Is the trach capped or if not, does it not need suctioning often?
      - Could the patient be weaned off the trach?
      - Have you used the Medicare Dialysis Care Compare database to find a clinic? There are over 150 dialysis clinics in SC. Some aren't owned by DaVita or Fresenius. You can find this database using this link - https://www.medicare.gov/care-compare/ - and look for dialysis facilities.

      Finally, you might try calling (803) 545-4370 or 1-800-922-6735. This is the phone number to call in the SC Dept of Health & Environment to file a complaint. You could ask the person who answers to refer you to the state surveyor who surveys dialysis facilities and/or nursing homes to ask what s/he knows about dialysis for patients with trachs in a dialysis facility or nursing home.
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  • Mary Powell

    Nov 23, 2022 12:53 AM

    My daughter has a trache. No dialysis center will take her and the hospital wants her sent to another center for In care but she is adamant about not going to another facility were she has to stay there. What can we do?
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    • Beth Witten

      Nov 23, 2022 4:05 PM

      Her treating nephrologist at the hospital needs to provide medical records and refer your daughter to a dialysis clinic. Nephrologists who treat patients in the hospital usually also treat patients in dialysis clinics. The medical director at a dialysis clinic is allowed by regulation to determine if a clinic is able to meet the patient's needs. Dialysis clinics often have a limited number of RNs and they may not have recent experience in trach care. I've heard that DaVita and Fresenius (the two largest dialysis corporations) are working to get staff trained to care for trach patients. I don't know where those clinics are located.

      In the meantime, talk with the nephrologist who is caring for your daughter now. Ask him/her if s/he can advocate for your daughter with colleagues in the community assuming your daughter is stable enough to be discharged to home once a dialysis clinic is found that will admit her. Ask the nephrologist if it would help if the family provided someone trained in trach care to be present during dialysis at the clinic to perform that care if needed. Ask if any clinic might be willing to train a family member to do home dialysis (peritoneal or hemodialysis). Your daughter's care partner would need to be trained to do dialysis and trach care.

      If your daughter's trach is capped and doesn't need suctioning, that might help. Has any doctor provided an estimate of how much longer she might need the trach? If it's short-term, would she be willing to get care at a skilled nursing facility that does dialysis onsite?

      Davita Guest Services Admissions team at (866)475-7757 may be able to find a clinic that would work with you and her doctor on whether there is a clinic wiling to treat her. If you email me at beth@wittenllc.com and tell me more about her condition, where she lives, and where she's hospitalized now, I can reach out to those I've worked with at DaVita and Fresenius to see if they can help.
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  • Jesusa Lee

    Oct 18, 2022 2:39 AM

    My son just had a stroke, his 40 years old, is on dialysis. He has a breathing tube down his throat and they will try to remove it and see whether he can breathe his on own or he will most likely require a trach. The other option that they keep repeating is 6 ft under. He is currently admitted in the largest acute hospital in Hawaii and just learned that I may have to take my son to mainland/upstate to find a place that will do his dialysis with trach. I am not rich. Living paycheck to paycheck. We lost his father to the same disease and pretty much used all my savings. Reading the difficulties you are having to find a place to take your love ones to have them do dialysis to prolong their life is heart breaking. Dialysis clinics are popping up all over the place, but will not take patients that have trach. It is pure greed and our leaders in government need to do something. Our loved ones deserve better treatment and compassion. They don’t deserve this. With all the technology out there. I love my son and I appreciate what other options are available and keep emphasizing to this physicians that 6 ft under next to his father is not an option. God bless you all!
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    • Beth Witten

      Oct 20, 2022 7:48 PM

      I am so sorry to hear about your son's stroke and need for a trach and ventilator. If they are able to wean him off the ventilator and he can breathe on his own, ask how long he will have to have the trach and whether it can be capped. If you're willing to learn, ask if they can train you to do his trach care. If he needs no trach care or if you're willing to do it while he's at a dialysis clinic, that may open more doors for him. Are you willing to learn home dialysis. Some patients with trachs/vents can do peritoneal dialysis (PD), which is much faster to learn and patients can do it using a PD cycler overnight while sleeping. Other patients and/or their loved ones can learn to do hemodialysis at home. Dialysis regulations allow patients to be trained in the patient's home. Ask if there's a home training nurse who will do that if you're willing to be trained. Ask the nephrologist who is caring for your son in the hospital to help you find a clinic that would either admit him to a clinic with your help for in-center dialysis or train you to do either PD or home HD. You don't say what island you're on. There are several clinics in Hawaii that offer home HD and/or PD. You can find them at https://homedialysis.org/clinics/search. If he'll need nursing home care, some nursing homes offer dialysis onsite.
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  • Ray Tanfer

    Aug 12, 2022 8:34 PM

    My father is a chronic ventilator patient living at home in the San Jose, CA area. I'm trained to take care of his trach care and manage the ventilator. He had an AKI in June and is new to dialysis. Currently on 3x weekly "in patient" IHD at a hospital. After a long hospitalization he is unable to sit for 4 hours so outpatient IHD is not an option (unless he gets stronger). He has Medicare and Medi-Cal insurance.
    I need to find either an LTAC or a Sub-Acute SNF willing to admit him. Has anyone had luck finding such a facility for their patient in a similar situation? our family will consider any part of California and neighboring states.
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    • Beth Witten

      Aug 25, 2022 3:22 PM

      If you're able to do his vent and trach care, are you willing to learn how to do his dialysis? If his doctor has decided that his kidney failure is permanent, the dialysis regulations allow dialysis clinics to train people and care partners in their home. Because he has CA Medicaid, he should be eligible for Home & Community Based Services that are provided in patients homes with the goal of keeping them from needing nursing home care. https://www.aging.ca.gov/Programs_and_Services/Home_and_Community_Services/

      If you're not able to care for him at home, the two largest dialysis corporations, DaVita and Fresenius, are providing dialysis in some nursing homes.
      DaVita - https://www.davita.com/treatment-services/dialysis/skilled-nursing-facility (lists states & contacts)
      Fresesnius - https://fmcna.com/patient-care/kidney-care/skilled-nursing-facilities-partnership/ (see contact form)

      You may find others by searching Google for "nursing home dialysis."
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  • Renee Paulson

    Jul 20, 2022 4:40 PM

    Hi, thank you this has been the BEST site I have found with info and some understanding of all of this. We are from White lake Michigan in Oakland County with very limited transportation. My dad was hospitalized for almost 6 months & diagnosed with Cancer had a trach imported and given Chemo 4 times w/o knowledge of kidney failure also needs 24 oxygen & can't hear very well. He was started on dialysis for the past month. I was never advised about anything & we were unaware of a discharge until the day b4. He had a very bad failed discharge & was told Davita in Clarkston wld take him & hosp was fully aware that transportation was a must. Told him it was all good and kicked him out. Called Davita Clarkston told no transportation and 4:45 am appt only take it or leave it. Called 800 # looking for appt change & transport info operator said we dont take trach patients & to take him back to the hospital. I had to re admit my dad after all this time less than 48 hrs later. He was there for 2 more days released to no options except to go back, no transport given to their ER at 11am 3 days a week, wait 1st come 1st serve basis. Yesterday he was started at 4pm dialysis. PLEASE HELP ME
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    • Beth Witten

      Jul 20, 2022 6:07 PM

      I have found dialysis clinics to be reluctant to admit patients with trachs due to staffing and higher patient needs. I'm glad your father has found a clinic willing to admit him. However, I would expect a clinic to do more to accommodate his transportation needs. FYI, within 10 miles of White Lake, MI there are 5 DaVita clinics offering in-center dialysis and there is a Greenfield Health System clinic in Novi, MI that offers training for peritoneal dialysis and home hemodialysis using https://www.medicare.gov/care-compare/. You could check out Home Dialysis Central's Find a Clinic database as well if you want to look into whether other clinics have more flexibility. He might have to change kidney doctors if he changes clinics.

      The Area Agency on Aging reports that MyRide2 helps people find transportation options at https://www.myride2.com/. Providers may have limited hours of operation. I'd make sure the social worker and/or facility administrator are aware of the transportation service hours and ask for their help to get a shift during those operating hours if you or another family member or friend can't transport him to dialysis.

      I was appalled to read that any transportation service would refuse to transport a patient merely because he has a trach, I'd report that to the Michigan Department of Transportation's ADA Coordinator as a potential violation of the Americans with Disabilities Act. Here's that person's contact info:
      Tonya Doyle-Bicy
      Doyle-BicyT@michigan.gov
      517-241-4424

      Michigan Dept of Transportation
      Attn: Tonya Doyle-Bicy
      Van Wagoner Building
      425 W Ottawa St
      PO Box 30050
      Lansing, MI 48909-7550

      Many patients who lack transportation choose to do home dialysis (peritoneal dialysis or hemodialysis). This requires training and he may need help to do it. Here's a link to a decision aid that can help a patient and family review treatment options to see what might fit best with their values/needs. https://mykidneylifeplan.org/
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  • Lindsay

    Jun 11, 2022 9:11 PM

    I have a very similar situation. My dad was hospitalized due to COVID and was then diagnosed with kidney failure in the hospital (had no prior issues before hospitalization) and had to begin dialysis. The hospital is wanting to discharge him and stated no dialysis center in Missouri takes patients with a trach and wants to ship him to Chicago. Surely someone in Missouri has had a similar situation. We are hoping he can do in center dialysis until he becomes a little more stable. Any suggestions on places around Rolla, MO that accept patients with a trach to do it preferably in the center?
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    • Theresa Clark-timms

      Jul 20, 2022 7:42 AM

      Most of the facilities that take tracheotomy and dialysis patients are also in Texas.
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    • Beth Witten

      Jul 04, 2022 9:49 PM

      Is he hospitalized at Salem Memorial Hospital? That hospital has a dialysis clinic and would likely have access to respiratory therapy personnel to train family or dialysis staff to manage the trach if it requires suctioning.

      Looking at Medicare.gov "Providers and Services" for dialysis clinics in Rolla, there are 2 DaVita clinics (one that does in-center and home dialysis and one that trains patients for peritoneal dialysis. DaVita has suggested to me that when I encounter these cases, to advise the family to contact their Guest Services Admissions team at (866)475-7757. If the trach is capped and doesn't require suctioning, be sure to say that.
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  • Steph B

    Jan 05, 2022 3:32 AM

    Similar situation as the above in Philadelphia. Do you know of any dialysis center's in Philadelphia that will take a patient with a trach?
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    • Beth Witten

      Jan 19, 2022 1:26 AM

      I emailed one of the leaders at DaVita who asked the area of Philly where the patient lives and whether the patient's doctor is credentialed with DaVita. So it sounds like there may be a possible clinic. If you email me at beth@wittenllc.com, I'd be happy to share that info and see if I can get a clinic name.
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  • Denise Murphy

    Dec 21, 2021 5:17 PM

    I started dialysis in December 2020 after being diagnosed with COVID-19 at Emory Hospital in Atlanta, Georgia. I was discharged in February 2021. After being discharged from the hospital I began receiving dialysis from a local Davita Kidney care center. In August 2021, I began having issues with my breathing. Due to repeated intubations, my vocal chords are not operating and are basically stuck together. I was told that I have some form of vocal chord stenosis. In October 2021 I had a tracheostomy. I was sent to a specialty hospital with a plan of having the trach removed. Unfortunately, I couldn’t tolerate being capped so for now I have to keep the trach until my ENT feels that I am ready for the first of several surgeries. I tried to go back to Davita for dialysis but was refused care because of the trach. I have been in this specialty hospital since October because no one will provide dialysis to me. I am not bed ridden. I can walk, talk, dress myself and anything else that I need to do. It is difficult for me to believe that in this day and time that there no one in the Atlanta area that will give me dialysis because of the trach. I don’t want to die; but live. This hospital has tried everywhere to get someone to provide dialysis for me. No one will do it. I cry myself to sleep most nights because I miss being home with my family. Where in the world can I find help in this area?
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    • Theresa Clark-timms

      Jul 20, 2022 7:47 AM

      So sorry, I am going through this with my brother. Texas has many skilled facilities that do both. I found a great long term facility.
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    • Beth Witten

      Dec 21, 2021 5:19 PM

      Hi Denise,
      I'm sorry to read about this situation. Are you an inpatient at the specialty hospital since you haven't been able to get dialysis at an outpatient clinic? If you were able to get outpatient dialysis, could you live independently with or without help from your family or friends/support system? Before you were denied readmission at your DaVita clinic, did your nephrologist and your ENT tell the clinic if your trach needed suctioning, how often, and whether you had been trained or could be trained to do that yourself? Although trach care is part of an RN's training dialysis clinic RNs may be rusty on trach care and clinics may believe staff don't have the time to do that with staffing as tight as it is. I'm not making excuses for clinics and believe they should be able to admit/readmit patients like you. Would you be interested in learning how to do PD or home hemodialysis if you could get training to do that in the clinic or in your home if a clinic in your area would offer that? When you learned you couldn't get dialysis at your clinic, did you contact the patient services personnel at IPRO ESRD Network 6 that covers Georgia to see if they knew your clinic refused to readmit you? I view this as an involuntary discharge (IVD). By federal regulation dialysis clinics are supposed to notify the ESRD Network and State survey agency when they IVD a patient. You could file a grievance with the Network by calling IPRO ESRD Network 6 at 1-800-524-7139 and the GA Department of Community Health (State survey agency) at (800) 878-6442. I am trying to address these kinds of problems. Please email me at beth@wittenllc.com.
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  • David M Larson

    Aug 23, 2021 9:57 AM

    I live in Lockhart Texas and spouse is in an Austin LTAC hospital with trach on 28% oxygen and requires dialysis. The case manager says no dialysis clinic in Austin Texas area will accept patients with trach. Since Fresenius Lockhart is listed on this site and offers home dialysis and classes; will they accept patients with trach for home HD training? Our home is 35 miles south of Austin.
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    • Beth Witten

      Aug 27, 2021 11:20 PM

      I really wish I knew which dialysis clinics would admit someone with a trach. Unfortunately, the Find a clinic database on this site and Medicare's list of clinics only provides contact information, what types of dialysis they offer. I looked on our database, Medicare's database, and on the DaVita, Fresenius, and CVS-Wellbound site and here are some clinics that say they offer home HD.
      - DaVita Balcones at Home - 1-800-424-6589 (placement specialist)
      - Fresenius Kidney Care Austin South - (512) 707-7601
      - Fresenius Kidney Care Kyle - (512) 268-2428
      - Wellbound Austin - (512) 833-6651
      - Wellbound South Austin - (512) 735-6300

      Have you asked your spouse's nephrologist if s/he will help you find a clinic that will admit your spouse. S/he would need to talk with the medical director and describe your spouse's condition. Because staff in dialysis have limited time, it would help if your spouse's trach requires little care. In most cases, a patient and care partner are trained in the clinic so you would be provide to trach care if needed during training. The dialysis regulations allow clinics to train a patient at home if the clinic is staffed well enough to allow the home training nurse to do that.
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  • Gloria Wheeler

    Aug 20, 2021 9:45 PM

    My mom has been in a rehab facility for 5 months now. She has a Trac and gets Dialysis as well. Similar to the stories I'm reading. We are in Arizona and can not find an outpatient center to do Dialysis on her. I find it extremely hard to believe that they can not accommodate such needs. There has to be something these Dialysis centers can do for these outpatients. It's heartbreaking, my mom does not need to be in assisted living, nor a long term care, she is very capable of doing things for herself. Please help!
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    • Beth Witten

      Aug 22, 2021 12:14 AM

      Was your mother on dialysis at a clinic before she had the respiratory condition that required the trach? You say that she doesn't need assisted living. How stable is her health? Is her trach capped? Does it need suctioning rarely or frequently? One of the barriers to admission to an outpatient dialysis clinic is when a trach isn't capped and needs suctioning since RN staffing is limited in dialysis and staff who are there may not have recent experience working with a trach. Can she or another trained family member or other suction the trach if needed? Is she interested in and has she been evaluated for peritoneal or home hemodialysis? Some clinics have trained patients to home dialysis in their home. Is the nephrologist treating her at the rehab facility affiliated with a dialysis facility? Have you asked for his/her help to get her admitted for in-center or home dialysis? Doctors often have better luck getting a colleague to admit a patient after letting him/her know the patient is stable and capable of being more independent than is possible in assisted living.
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  • Lauren Bender

    Jul 31, 2021 2:31 PM

    My grandfather started kidney dialysis in the hospital after needing his vocal chords removed and a throat stoma inserted due to throat cancer. He has been in a skilled nursing rehab facility for two months because they offer dialysis. He is very independent and actually leaves the nursing home daily. He auctions himself, feeds himself (he currently has a peg stomach feeding tube due to his throat healing) and the doctors from the hospital and nursing home have all agreed he is ready to go home. However, we cannot find any dialysis center that will accept him for in-center or at-home dialysis. He is extremely defeated and claims he will just go home and die. I can’t believe this is okay in our medical field. Please, any help finding a dialysis center that would accept him would be greatly appreciated. He lives in Mansfield, OH but is willing to drive to a center if necessary. Thank you!
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    • Beth Witten

      Aug 02, 2021 4:02 PM

      Based on what you've written, it sounds like your grandfather is very independent. I would reach out to his nephrologist for help in seeking admission for in-center or home hemodialysis (HHD) or peritoneal dialysis (PD). Nephrologists may have better success when they communicate with their colleagues and describe the patient's medical status and needs. You say he could drive to a clinic or would be interested in home dialysis. Would he have someone to train with him if necessary if he can find a clinic to admit him that offers HHD or PD? There are 8 dialysis clinics within 25 miles of Mansfield, OH on the Medicare Compare site at https://www.medicare.gov/care-compare/?providerType=DialysisFacility&redirect=true. IPRO ESRD Network of the Ohio River Valley might be able to help. I'd suggest you reach out to Andrea Bates. Here's contact info:
      https://esrd.ipro.org/about-our-networks/contact-us/network-9-staff/. If neither of those options work, please let us know by contacting us at https://homedialysis.org/about-us/contact.
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  • Heather

    May 25, 2021 6:51 PM

    I am a dialysis nurse that has recently run into this. I work in a military hospital and have tried to get a patient to an outpatient clinic with a trach and was told that there is nowhere in our area that accepts trach patients. This was both DaVita and Fresenius, I don't even know how this is legal. Something needs to be done to change this. The "for profit" companies that have monopolized the dialysis world are denying access to care, this has got to be illegal.
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  • Theresa Shomaker

    Mar 31, 2021 4:27 PM

    I find my mother to be in a very similar situation to those above except with the addition of high anxiety because she is away from her home and has had extremely limited visiting hours of 4 hours a day in her previous LTAC.
    She had a surgery at the end of November and ended up paraplegic due to complications and lost her kidney function along with unable to ween because of her anxiety.
    Everyone has told us it is impossible to do both dialysis and trach care in the home setting for her and our only option is to move her a nursing home another state away or take her home for end of live care without dialysis.
    She has a supportive family and would live, thrive, have low anxiety and more then likely strong enough to ween properly if we could just get my mom home.
    I am will to do what ever it takes to do this but I can't find help and the prior hospital amd LTAC has said this isn't possible. Please help because she has made it clear it's home and no where else.
    Please help me save my mom if you can. We are on borrowed time already admitting her into another hospital Missouri Baptist in St Louis. Also anywhere within range of Melbourne, Florida outside of Orlando will work to as we were in the middle of moving before she went in for this surgery. We will pay to transport her just need to find a solution.
    Open to anywhere in the US if there is no options close to these locations to do in home care. Home is the people you love and family not four walls and a roof.
    Thank you so much!

    Theresa Shomaker
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    • Beth Witten

      Apr 07, 2021 11:15 PM

      Contrary to what people have said, it is possible for a patient to do home dialysis (peritoneal or hemodialysis) when requiring a trach and/or vent. The patient would need to have a committed trained person, usually family member or friend who volunteers their time or a paid caregiver. The Medicare website has a database called Dialysis Facility Compare at at https://www.medicare.gov/care-compare/. You can search for clinics offering training for peritoneal dialysis (PD) or home hemodialysis (HHD). You would enter the city (Melbourne) or zip code and choose the dialysis database. The auto-default is set for 25 miles, but you can expand the distance if needed. Under Services, look for peritoneal dialysis or training for home dialysis. You can also see the number of stars a clinic has for quality and patient experience. There are 13 clinics within 25 miles of Melbourne of which 11 offer PD and 4 offer home dialysis (HHD) training. The medical director of the clinic has to agree to admit the patient for home or in-center dialysis Sometimes a medical director will refuse to admit a patient if s/he believes the patient is too unstable to dialyze at home or in-center.

      In case home dialysis is not an option at this time, Kindred Hospital in Melbourne provides care for people who require a vent, and the website indicates that it “may offer dialysis in a designated room or at the bedside.” The contact information for Kindred is:
      Kindred Hospital Melbourne
      765 West Nasa Boulevard
      Melbourne, FL 32901
      321.733.5725
      https://www.kindredhealthcare.com/locations/transitional-care-hospitals/kindred-hospital-melbourne/types-of-care/additional-types-of-care
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  • Ramsey

    Jan 12, 2021 9:15 PM

    I am looking for an outpatient dialysis center near Milwaukee, WI that will accept patients with trachs. We're also open to facilities that will train us to do in-home dialysis with trach support.
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    • Beth Witten

      Jan 12, 2021 9:58 PM

      Is the patient in the hospital? If so, ask the kidney doctor to help you find a clinic. The social worker or discharge planner should be helping also. A clinic will want to know how stable the patient is and whether the trach is capped or needs suctioning. The less the dialysis clinic has to do with the trach and the more staff of the dialysis clinic can focus on providing dialysis or training the patient and a helper to do it at home, the easier it will be to find a clinic to admit him/her. Check out the Find a Clinic database on this website and search Google for the Medicare Dialysis Facility Compare website. They both will give you information on clinics in that area and if they offer home training for peritoneal or home hemodialysis.
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  • Marsha Solomon

    Sep 30, 2020 12:07 PM

    I am trying to find a dialysis center in Bergen Co NJ that trach patients. He is currently in Indianapolis in the hospital has been in the hospital for over a month. I have found a long term facility because he will be living in one. He has no family in Indianapolis I am desperate to move him closer to family. PLEASE can you assist me. This is my son he is recovering from a stroke, has had leg amputated above the knee has had his colon removed.
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    • Mona Nelson

      Dec 26, 2020 2:10 AM

      Try Davida in st joseph in Paterson.
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    • Beth Witten

      Oct 02, 2020 2:02 AM

      There are companies that perform dialysis in nursing homes on their residents. Dialyze Direct (https://www.dialyzedirect.com/contact/) has an office in NJ and may serve nursing homes there. Genesis Healthcare (https://www.genesishcc.com/findlocations/) provides dialysis in nursing homes in New Jersey. Alaris Health (http://alarishealth.com/dialysis/) has nursing homes offering dialysis in New Jersey. There may be others. I found these looking on Google for "nursing home dialysis New Jersey."

      NOTE: Medicare covers dialysis, but doesn't pay for staff to do dialysis on patients in their home or nursing home/rehab. Other insurance may cover this cost.
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  • Mona Nelson

    Jun 29, 2020 8:19 PM

    My mom has a trach and stable on low oxygen like 28 percent. currently she is getting inpatient dialysis and they refuse to take her as an outpatient. she laying in the bed just waiting for placement. No one seems to care. I want her discharge home but with no dialysis placement she can not go anywhere. I am a critical care nurse with 18 years as an RN and i volunteer my service to the facility that i will do it myself and bring supplies with me. i will even sign a waiver form that they will not be responsible. I even ask the nurse at the inpatient dialysis if she needs that much suctioning. they told me " No" . meaning my mom tolerated dialysis for 4 hours without needing suctioning. This is basic skills we learned as a nurse to suction a patient. i hope no one have to go through what i have been through for the past month. no one advocates for their patient anymore. This is just pure greed
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    • Beth Witten

      Jul 10, 2020 6:36 PM

      You might want to ask her nephrologist and pulmonologist if she can do either PD or HD. With your nursing background and your willingness to limit a dialysis clinic's liability, I would hope you could find a clinic that would be willing to admit your mother and train you as her care partner. Some medical directors may be more open to this than others. Have you tried calling clinics that offer PD or home HD in your area? You can find them on this site under Find a Clinic or on the Medicare website at medicare.gov/dialysis.
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  • Susan

    Mar 05, 2020 6:06 PM

    My father's case is similar to cases 1 and 2 above - and we are disgusted with the failure to provide my medically- stable father his needed dialysis due to his fully-healed stoma (from a total laryngectomy from laryngeal cancer 8 yrs ago), despite Drs' letters attesting that it is not an infection danger to himself or others and needs very minimal suction.
    He had pneumonia last November, which turned to sepsis and necessitated his starting HD. Once his condition stabilized he went to an LTAC for further recovery and inhouse dialysis (run by Fresenius), until he needed to be moved to a SNF for rehab to hopefully become ambulatory again.
    However when the SNF transported him to an Fresenius clinic which had previously accepted him(and was a "known" patient from the LTAC), he was sent away without dialysis.
    I was told that the dialysis clinics are able to turn down whomever they want, and have not offered any their clinics nearby (Northeast Mass.) which may have the respiratory staff to make their treatment more inclusive. It's terrible that such a vital medical treatment is profit-driven by these heartless corporate monopolies. At this time, he is in a hospital, just to receive his dialysis. His life lies in the balance of corporate policy and so I welcome any suggestions (not hospice,please, as lack of access to proper care shouldn't be fatal in this country). I am looking into home HD for him, but need a faster solution. Thank you.
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    • Beth Witten

      Mar 05, 2020 10:07 PM

      Thank you for your comment. I am sorry that your father is having difficulty finding a dialysis clinic to admit him. I have sent an email to people in Fresenius leadership that may be able to help. The Find a Clinic database on the Home Dialysis Central site provides information on clinics that offer "staff-assisted home dialysis." Some of them provided dialysis in nursing homes while others provide dialysis in people's homes as well.
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