Patient Grievances & How to Proactively Avoid Them

The ESRD Conditions for Coverage (CfC) under the Condition for Patients’ Rights at 42 CFR 494.70 requires dialysis facility staff to:

• Treat patients with “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”

• Inform patients about rules and expectations for conduct and responsibilities, the facility’s internal grievance process and external grievances process (to the ESRD Network or State survey agency) as well as their right to file a grievance without “reprisal or denial of services.”¹

Treating patients with dignity & respect with sensitivity to psychosocial needs & coping:

As a staff member, put yourself in a dialysis patient’s shoes:

• How might you feel if you had a chronic illness and dialysis was what kept you alive—maybe for the rest of your life or at least until you got transplant?

• What if you had been waiting years for a transplant and you were losing hope?

• What if you were anemic or had other health conditions that kept you from feeling well enough to do chores you needed to do or things you enjoyed doing before?

• What if you were working and needed to start training ASAP?

• What if your clinic appointments were scheduled when you needed to be home with your kids or at work and you worried you might lose your job, your income and your family’s health insurance?

• What if the home dialysis equipment you’re using didn’t work like it should and you worried you could get sick or die before it got fixed?

• What if your supplies weren’t delivered on the day you expected them, or the person dumped multiple boxes outside your door and you didn’t have the strength or endurance to get them where they were stored?

It’s easy to see how a patient with these stressors might feel depressed and hopeless. Patients who choose to do home dialysis are more likely to have an internal locus of control. These people believe they have control over events in their lives, and they want to be in as much control of their health and dialysis as possible. Doing home dialysis offers more control than in-center dialysis, but dialysis staff and physicians still have control over such things as:

• What time training can start and when it will end—which may affect a patient’s job.

• What equipment a patient can use and what supplies the patient can get.

• How to share treatment data and how quickly someone looks at it and contacts the patient if necessary.

• When a patient needs to come to clinic appointments and how they’re scheduled.

• Whether patients are encouraged to participate in care planning and asked to share their goals and challenges.

• Whether staff know how to deal with upset people who may appear hypersensitive, hypervigilant, and express their anger or withdraw out of fear of reprisal.

If patients are upset about having a life-altering condition, frustrated about big and little things they have little control over, it’s not too surprising they might not be coping well. How are staff taught to communicate with upset patients? Are they taught communication skills to deescalate conflict? When staff are overworked and stressed, they might react without thinking. When confronted, it’s easy to take things personally and to have facial expressions or body language that express what you’re thinking. Are staff taught to listen more and use a softer, slower, calming voice—instead of talking faster or louder?

What is a grievance?

The Centers for Medicare & Medicaid Services defines a grievance as:

A written or oral communication from an ESRD patient, and/or an individual representing an ESRD patient, and/or another party, alleging that an ESRD service received from a Medicare-certified provider did not meet the grievant's expectations with respect to safety, civility, patient rights, and/or clinical standards of care.

How many grievances are reported?

The ESRD Networks track and report data on grievances to CMS. In 2012, there were 1301 grievances.² In 2016 (the most recent data reported), there were 1872 grievances. A webinar on the Forum’s grievance toolkit was attended by 896 including social workers (66%), nurses (15%), administrators (12%), and dietitians, patient educators, patients, PCTs, physicians, and quality managers (7%).³ When asked the polling question: Do you think patients in your facility feel safe speaking up about concerns or complaints? The responses were:

• Yes, definitely: 39%

• I think so: 51%

• Probably not: 9%

• No, definitely not: 1%

A 2018 Survey Monkey of all ESRD Networks found that 72% of patients did not understand the grievance process and almost 89% of those who responded feared retaliation.

CMS Expects a Culture of Safety

Dialysis clinics are supposed to provide safe and effective care. CMS expects the corporate leadership and clinic management to encourage patients and staff to feel safe from reprisal when voicing suggestions and/or concerns. Staff and patient suggestions and concerns can be the “canary in the coal mine” to identify problems that could be dangerous or costly. It’s important for all to understand that grievances are not necessarily a bad reflection on the clinic. However, when a clinic has no grievances at all, it can mean that patients (and staff) may be afraid to speak up.

Surveyors try to determine the clinic’s culture through observations, reviewing medical records, and interviews with staff and patients. There are worksheets to guide interviews. All staff and patient interview worksheets have culture of safety questions. Surveyors may ask facility administrators:

• “How does this facility encourage patients to voice suggestions, comments, and complaints?

• What is your system for handling patient complaints, including reporting complaint resolution to the patient?”

Surveyors may ask patients:

• “How are you encouraged to speak up and make suggestions or comments about the facility and your care here?

• If you had a concern, how would you file a grievance here or elsewhere?

• How safe from retaliation would you feel voicing a concern, making a suggestion, or filing a grievance?

• If you were afraid of retaliation, could you file a grievance anonymously?”

Does Your Clinic Have a Culture of Safety?

The QAPI team should review the results of the ICH CAHPS survey annually and use that survey to make needed changes. The team might want to include at least one patient for each modality in this discussion to assure that patients’ opinions and suggestions are included. There are four questions on the ICH CAHPS Survey that could alert dialysis clinic management whether patients need more information about the process for expressing concerns, steps to take to assure that patients feel safe voicing their concerns, and whether patients need more information about how the clinic is addressing their problems or concerns. These are:

#41. In the last 12 months, were you ever unhappy with the care you received at the dialysis center or from your kidney doctors?

#42. In the last 12 months, did you ever talk to someone on the dialysis center staff about this?

#43: In the last 12 months, how often were you satisfied with the way they handled these problems?

#44. Medicare and your State have special agencies that check the quality of care at this dialysis center. In the last 12 months, di you make a complaint to any of these agencies?

Most of the time when patients report grievances or staff contact the Network about patients they want to involuntarily discharge (IVD), physicians and dialysis staff often focus on patients’ disruptive behaviors—not always looking at what may have triggered that behavior and the staff’s role. A 2015 article⁴ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4527021/) looked at patient and physician behaviors that lead to conflicts in the dialysis clinic. Here’s a table of those disruptive behaviors.

Disruptive behavior by physicians is often under-reported because others tolerate it, are indifferent to it, or fear reprisal. The medical director is responsible for addressing a physician’s disruptive behavior. When the medical director is the one who exhibits disruptive behaviors, the clinic administrator or nurse manager should seek help from supervisors or the governing body. When a physician (or other staff) behaves disruptively it can adversely affect patients’ health outcomes, patient and staff satisfaction, and safety. The article provides suggestions for interventions. Physician and staff behavior set the tone for the dialysis clinic.

CMS expects involuntary discharge to be a rare occurrence. The ESRD Conditions for Coverage (CfC) only allow IVD if:

“(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

(4) 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…”

The CfC describes steps a clinic must follow prior to involuntarily discharging a patient. If a physician refuses to provide care, to avoid “medical abandonment,” s/he should inform the patient, provide “reasonable” time to make other arrangements, and make “reasonable” attempts to find someone else to provide care to the patient. (“Reasonable” is Court-defined as what a “reasonable person” would do given that situation.)

Helping staff avoid patient grievances

In 2002, when CMS started counting the number of patients who were involuntarily discharged (IVD) and why, it found the most common reason for IVD was noncompliance (25.5%) followed by verbal threat (8.5%). Of those IVD patients, 50% were not receiving dialysis in another clinic, but were getting dialysis in an ER or other or had an unknown outcome. Without regular dialysis, patients are at high risk of hospitalization and early death. This study led to development of the Decreasing Dialysis Patient Provider Conflict Provider Manual (http://esrdnetworks.org/resources/special-projects/copy_of_DPPCProviderManual.pdf/view) in 2005 and revision in 2009. The CMS ESRD Interpretive Guidance (https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/GuidanceforLawsAndRegulations/Downloads/esrdpgmguidance.pdf) suggests dialysis that staff use this manual to resolve patient-staff conflicts before they escalate to involuntary discharge.

Helping patients understand the grievance process

In 2016, the Forum of ESRD Networks Patient Advisory Committee published the Dialysis Patient Grievance Toolkit. (http://esrdnetworks.org/resources/toolkits/patient-toolkits/dialysis-patient-grievance-toolkit-1) This toolkit was developed by patients for patients to help explain the grievance system and help “grievants” to work through that system. The manual includes chapters on history, how to use the toolkit, Patient Rights and Responsibilities, Grievances in a Patient-Centered Care Environment, Barriers to a Successful Grievance Experience, What Do You Do If You Have a Concern or Grievance, two worksheets on the Network’s Role in the Grievance Process, Documentation: Before Proceeding with a Grievance, plus an appendix.

Suggestions from patients for dialysis staff:

ESRD Network 17 staff and patient subject matter experts created an intervention to address patients’ grievances. It included asking patients what staff could do to foster the kind of environment where patients felt comfortable voicing their concerns. This list was included in a presentation at the National Kidney Foundation Spring Clinical Meeting:⁵

• Designate a trained patient point person to talk to management for me

• Have staff and/or my doctor ask me periodically if I have any concerns about my care

• Use suggestion cards patients could fill out and submit. Suggestions could then be reposted on a bulletin board with managements’ responses (if appropriate).

• Have the clinic distribute wallet cards with the company’s complaint line phone number

• Provide all patients a copy of the Dialysis Patient Grievance Toolkit

• Have staff document patient concerns immediately so that they don’t get forgotten

• Have staff thank patients for speaking up; encourage open communication lines

• Provide a suggestion box for ideas for the clinic that was reviewed regularly

• Include a patient representative at the monthly clinic quality improvement meeting

• Have staff talk more with patients in general, not just about dialysis

Dialysis patients need to feel safe whether they are getting dialysis in-center or at home. They need to feel free to express suggestions and concerns. The most common barrier for patients in reporting a concern is fear of reprisal. To overcome that fear, dialysis clinics need to create and maintain a culture of physical and emotional safety.