More than half a million people in the U.S. live with end-stage renal disease (ESRD) and require renal replacement therapy to sustain life. Approximately 90% of these patients travel to a dialysis center three times a week for treatment.
Many dialysis patients are dependent on public transportation or contracted medical transportation services in order to get to the dialysis facility. Missing even one dialysis treatment can cause severe complications and jeopardize patient health. Because dialysis is a chronic outpatient treatment, patients are responsible for their own transportation.
According to the ESRD Conditions for Coverage, each dialysis facility must keep a Master’s degree social worker (MSW) on staff (Department of Health and Human Services, 2008). One of the social workers’ responsibilities is to assist dialysis patients with transportation information and referrals. However, options beyond public transportation are limited. Dialysis facilities are limited in directly helping patients with transportation, as providing transportation in their own private vehicles can be considered an inducement. Patients who experience barriers to transportation often delay dialysis altogether or seek treatments in hospital emergency rooms.
A recent evaluation of factors associated with missed dialysis appointments (Chan, Thadhani, & Maddux, 2014) found that patients who traveled to dialysis via a transportation van or who drive more than 17 minutes to a clinic were at increased risk of missing their hemodialysis treatment. Missed treatments were also more prevalent when snowfall was heavy. Further, patients with private transportation to dialysis had significantly better attendance and outcomes when compared to patients who relied on public transportation.
Chenitz et al (2014) interviewed patients using in-center hemodialysis and found that the most commonly reported barriers to hemodialysis were inadequate and/or unreliable transportation. This was true for both “adherent” and “nonadherent” patients. Patient recommendations to improve dialysis attendance included more accessible transportation.
A 2014 study, Improving Transportation for People Who Receive Dialysis Treatment, was conducted by Ride Connection, a non-profit organization that provides transportation for people with disabilities and older adults in Clackamas, Multnomah, and Washington counties in Oregon. The study’s findings include:
- Thirty-three percent (33%) of patients surveyed as part of this study indicated that they shortened their dialysis treatments because they were worried about missing their ride. Late and/or missed rides affect dialysis treatment and health outcomes.
- Forty-two percent (42%) of the patients surveyed who did not primarily drive themselves to the clinic indicated that thinking about their transportation was a source of stress in their lives.
- Patients need more flexibility and dependability in dialysis treatment transportation.
- Patients experience waiting and indirect routes in transportation to and from dialysis, and there is a disconnect between resident geography and clinic choice.
- Patients describe challenges with drivers and dispatch.
- Patients are concerned with transportation affordability and cost.
As a result of the study’s findings, Ride Connection increased education to raise awareness in patients, drivers, clinicians, and social workers. Interventions included educating patients on options including selecting a dialysis clinic closer to home and advocating that transportation providers revisit their existing protocols to help address dialysis patients’ transportation challenges through:
- Flexibility in return trips, such as will-call return
- Prioritizing life-sustaining trips, such as dialysis
- Allowing drivers more flexibility in their schedules to wait for dialysis patients
- Training drivers with information about conditions that affect dialysis patients.
Emergencies and dialysis transportation
Emergencies and disasters can severely limit the availability of the resources required for successful dialysis treatment. Affected resources may include electricity, potable water, dialysis supplies, qualified dialysis facility staff and other health professionals, and transportation. During severe weather, dialysis patients face significant challenges securing transportation to and from treatments. Even when facilities are open and operating, patients may be left stranded. As a result, many patients are forced to either delay dialysis, forego treatment altogether, or seek treatment in hospital emergency rooms. This, in turn, puts patient health at risk and places an additional burden on emergency response personnel and resources. As mentioned earlier, many dialysis patients are dependent on public transportation or contracted medical transportation services to get to the dialysis facility; missed treatments are more prevalent when weather related emergencies, such as heavy snowfall, occur. Some of the emergency-related transportation barriers are listed below.
- Transportation services suspended due to weather conditions
- Lack of drivers
- Transportation company concerns about liability of deploying drivers in unsafe conditions
- Road/bridge closures due to severe weather and/or flooding
- Transportation providers not authorized to take patients across county lines/out of disaster area
- Door-to-door services not available
- Interruption in gasoline availability (supply shortages or power outages)
- Encourage dialysis facilities to secure contracts or memorandums of understanding (MOU) for backup services from traditional and non-traditional resources, including transportation providers.
- Provide dialysis to patients prior to an emergency (when advance notice is possible, such as a severe storm or flooding).
- Look at the option of home dialysis for eligible patients that experience transportation issues.
- Educate patients on the emergency renal diet and sodium/fluid restrictions.
- Help patients to identify alternative sources of transportation (such as family, friends, or community).
- Assist those patients who have no backup plan with possible options, and maintain a list of those vulnerable patients, as they will need extra help during disasters.
- Re-route patients to alternate facilities.
- Identify gas stations that can operate during power outages.
- Develop a plan for gas allocation.
- Encourage early evacuation of individuals with kidney failure if they are on dialysis, along with appropriate family members (where possible), to out-of-area family/friends, or appropriate shelters.
- To minimize triage and transportation issues, designate one regional shelter to house dialysis patients near a dialysis facility that has generator capability, and triage all patients in the shelter to the designated facility.
- Triage, provide urgent care, and evacuate patients to a location where services can be provided on a routine basis in a safe environment.
- If safe, allow patients and staff with appropriate identification to cross roadblocks and travel during curfews to get to and from dialysis.
- Explore transportation assistance available through FEMA in the event of a disaster.
One state’s emergency dialysis transportation plan
Delaware has established guidelines for the transportation of dialysis patients during an emergency when the State Emergency Operations Center (EOC) is activated. This plan defines roles and responsibilities of agencies involved in the transportation and facilitation of treatment of dialysis patients.
Logisticare, the nation’s largest provider of non-emergency medical transportation programs for state governments and managed care organizations, will take the lead with coordination of transportation with available providers during an event.
- Delaware National Guard will serve as a secondary resource
- A Division of Social Services representative will act as liaison for dialysis transportation with the State EOC, and maintains a list of off-hours phone numbers for dialysis centers and Logisticare
This level of coordination and focus on dialysis needs in an emergency should contribute to a more orderly response to crisis, and be replicated in other states.
In conclusion, problems with transportation, whether during day-to-day dialysis or during an emergency and/or disaster, present significant roadblocks to patients’ access to care. However, improving access to outpatient dialysis transportation will enhance patient outcomes, experience of care, and quality of life. -by Lisa Hall, MSSW, LICSW; Rachelle DuBose Caruthers, LMSW, LSSGB; Sally Gore, MSW, MBA, PMP
This material was prepared by the Kidney Community Emergency Response (KCER) contractor, under contract with the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services. The contents presented do not necessarily reflect CMS policy nor imply endorsement by the U.S. Government. CMS Contract #HHSM-500-2016-00007C Publication Number: FL-KCER-7K1T3B-10202016-01.
- Centers for Medicare and Medicaid Services. (n.d.). Your Medicare coverage: Ambulance services. Retrieved September 17, 2016, from medicare.gov/coverage/ambulance-services.html
- K., Thadhani, R., Maddux, F. (2014). Adherence barriers to chronic dialysis in the United States. Journal of the American Society of Nephrology. 2014 Nov:25(11):2642-8. See comment in PubMed Commons below
- Chenitz, K.B., Fernando, M., Shea, J.A. (2014). In-center hemodialysis attendance: Patient perceptions of risks, barriers, and recommendations. Hemodialysis International. 2014 Apr:18(2):364-73.
- Department of Health and Human Services. (2008). 42 CFR Parts 405, 410, 413 et al. Medicare and Medicaid Programs; Conditions for Coverage for End-Stage Renal Disease Facilities; Final Rule. Retrieved September 17, 2016, from http://m1.healio.com/~/media/nni/regulationsandguidance/legislation/cfcsandcops/downloads/esrdfinalrule0415.pdf
- Ride Connection. (2014). Improving transportation for patients receiving dialysis treatments: A report on findings. Accessed online September 8, 2016 at http://m1.healio.com/~/media/nni/wpcontent/uploads/2013/11/rideconnectiondialysistransportationaclstudyfinalreport.pdf.
- Vart, P., Gansevoort, R. T., Joosten, M. M., Bültmann, U. & Reijneveld, S. A. (2015). Socioeconomic disparities in chronic kidney disease. American Journal of Preventative Medicine, 48 (5): 580-592. doi: 10.1016/j.amepre.2014.11.004