As a hospital-based case manager, you work extremely hard to coordinate care between physicians, community resources, durable medical equipment providers and families. You coordinate with countless insurance plans. You solve problems and create solutions all day long and somehow bring it all together to discharge the patient with a safe plan.
You make the appropriate referrals, but what actually happens when the patient leaves your doors?
Sometimes, it all goes according to plan. In an ideal world, the patient has live-in family support, she’s well-educated and understands her health condition and discharge instructions. She lives in a safe neighborhood in a secure home. She knows why she takes her medications, and she can afford them. The home health nurse arrives soon after the patient gets home and sets up physical therapy and occupational therapy right away. The oxygen has already been delivered to the house, and the wheelchair arrived at the room before discharge. The patient has a bedside commode and shower chair at home. She follows her discharge instructions exactly and follows up with her primary care physician (PCP). She already has an appointment with her specialist and has transportation to get there.
Unfortunately, not all discharges go that smoothly. In my work as a case manager for a managed care organization, I encountered far more situations that went something like this:
The patient lives alone. Her daughter lives nearby, but she works all day and has a family to take care of, as well. There are steps to enter the house and the patient is wheelchair-bound. It’ll be a year before the community resource can install the ramp, and she cannot afford to pay someone to do it. Two days later, the patient still hasn’t heard from the home health nurse, and she can’t find the paperwork for the agency. Meanwhile, the agency is short-staffed. In fact, they can’t find staff to come so they decide to cancel. The patient’s daughter picks up the new prescription. Luckily, the antibiotic is free at a local pharmacy. Sadly, the patient hasn’t been able to refill some of her other medications because she cannot afford the copayment. Those inhalers are very expensive! The medication that makes her blood slippery is too expensive, as well. In addition, she could really use someone to come in and help with household chores and prepare her meals, but her insurance won’t pay for that kind of care. She does what she can, and her daughter comes over every night to help, but it is not enough. She needs assistance transferring from the wheelchair to the toilet, so she won’t drink any water because she’s afraid she won’t get to the bathroom in time. She has even started to wear an adult brief as a precaution, but they are very expensive, too.
You have been so diligent. As case manager, you have done the work and made all the arrangements, but you have no control over what happens once the patient leaves the hospital. Even though many hospital systems have programs to follow discharged patients, many gaps are not identified or resolved through those programs. Insurance plans offer case management programs, but not every member is eligible. Some PCP offices have programs to follow up with patients who have been discharged, but those seem rare.
You cannot control whether your discharge plan falls apart after the patient leaves your domain, but if that patient develops a urinary tract infection, takes a fall, gets a blood clot or develops pneumonia and readmits to the hospital, it may affect your hospital ratings and reimbursement. More importantly, it is going to create a negative health outcome for that patient, more medical debt and more for her to overcome.
Luckily, there are professional colleagues available to assist with that transition of care. Independent patient advocates can make a difference in patient outcomes as they follow the patient home (or wherever that patient is transitioned). They reside in the community and help bridge the gaps as patients transition home. They reinforce education, provide ongoing support to reduce complications and readmissions and help patients communicate with their healthcare teams. Many independent patient advocates have a healthcare background and have worked as physicians, nurses and pharmacists and provide medical guidance and care management. Many come from medical administration or utilization backgrounds and are knowledgeable about navigating health insurance and negotiating medical debt. Many even have case management certification! Others come to advocacy due to a personal story and a passion to help others. Those advocates who have earned certification as a Board Certified Patient Advocate (BCPA) through the Patient Advocate Certification Board (PACBoard.org) have passed a rigorous certification exam and committed to the BCPA ethical standards and code of responsibility.
Independent patient advocates don’t work for the hospital or insurance company. They work for the patient, and their goal is to ensure their needs are met and their rights are protected. We are part of the healthcare ecosystem, providing guidance to patients as they engage with the healthcare system.
When you identify a patient who might be at higher risk, such as a solo senior or someone with complex needs or low health literacy, you can educate the family about the role of independent patient advocates and recommend that they begin the relationship while the patient is still in the hospital. A patient advocate can communicate with the patient and healthcare team to identify discharge needs and barriers, helping to ensure a safe discharge and reducing the likelihood of readmission. Having a patient advocate onboard can even reduce the case manager’s workload. Keep a list of patient advocates that you can offer to patients. The sooner a patient advocate can be involved, the better.
As an example of how an advocate can help, I have been working with a family who was referred to me through the Greater National Advocates directory (GNANow.org). The husband reached out on behalf of his wife, who had a sudden medical issue and was in the hospital for 10 days. When she was released, they were overwhelmed and had no idea where to begin to get care. Unfortunately, it had been a month since her discharge when they finally found me, so they were feeling very lost and alone, and her follow-up care had been delayed. I met with them, listened to their concerns and we made a plan to address all their needs.
- First, they were concerned about the hospital bill. I was able to save them over $17,000 by applying for charity care on their behalf.
- The client had had a significant change in health condition but had been discharged home with no home health services. I helped them obtain assistive devices and adapt their house so she could be safe at home.
- She’d had a full workup while in the hospital, but they did not understand what any of the results meant. I obtained the clinical notes and explained it all so they could understand her health condition and the medications she was now having to take.
- The client had been told to see a slew of specialists, but they were getting no assistance from her PCP in arranging them. Referrals had been provided at discharge for specialists who were hours away from their home, were not in-network and who had no availability for 4 to 6 months out. I navigated the insurance process for them and coordinated with the PCP to secure referrals to specialists who were in their network.
Perhaps the most important thing I was able to do for them was give them peace of mind and the knowledge that someone was on their side. Nothing had been easy for this client, and I continue to provide my support; many of their problems could have been avoided had I been involved in the case sooner.
Because health insurance does not cover the services of independent patient advocates, our services are self-pay, and this financial aspect can prevent those most in need from utilizing our services. There are some grants available, and there are some organizations, such as the Patient Advocate Foundation (patientadvocate.com) that can provide limited services at no cost. Additionally, since patient advocacy is a new field, most healthcare professions don’t know about this emerging field. We are actively working to create awareness about the benefits of patient advocacy, recruit advocates to become certified and embed needs navigation at every level of the healthcare delivery system. Please add your voice to ours.
Case managers and patient advocates have a collaborative relationship and share many of the same goals for our patients and clients. Patient advocates in the community help ensure that your discharge plan is carried out safely. They can provide medical guidance and decision support, care coordination and care management, socio-economic needs navigation, medical bill and insurance claims review and resolution, medical debt negotiation, elder care planning and more. They work with the PCP and other specialists to meet the needs of the patient, helping the patient and family to understand and navigate the complex healthcare system.
I encourage you to visit PACBoard.org and use the directory available on that website to locate Board Certified Patient Advocates in your area. Reach out to them to establish a relationship and refer patients who would benefit from their services. Take their calls if they reach out to you. Welcome them if you see them in the hospital. Make a point to connect. Provide a list of a list of local and national independent patient advocates and advocacy organizations to every patient as part of your discharge paperwork. Together, we can make a difference in so many lives.
Patient Advocate Certification Board: https://www.pacboard.org/bcpa-certificant-list.
Greater National Advocates: https://www.gnanow.org.
History and Trends in Patient Advocacy: https://aphadvocates.org/assets/History-Trends-CSA-Schuler-12.21.pdf, a very good article that shares insights into patient/health advocacy from one of the leaders.
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