Care Managers and Healthcare Advocates
A chronic condition puts an immense burden on both the patient and their family, physically and mentally. There is the actual caregiving in addition to the mental load of monitoring symptoms, ordering refills, organizing your meds, scheduling doctor’s appointments, keeping track of what doctors said, what do in cases of emergency, medical bills, etc. Sometimes we just need help, myself included. It is too heavy of a load to carry alone!
Their own perspective
It is natural to turn to family members to help with the tactical and emotional burden; however, sometimes the family is so emotionally invested it can be hard. I get it! They love us and do not have the more neutral perspective that a doctor might have. So, let’s talk about ways to reduce the load! Two options are care management professionals and healthcare advocates.
Care managers are typically hired by health insurance companies - even sometimes hospitals - and they help coordinate care. Typically, they are assigned to people with complex chronic medical conditions like diabetes or heart failure.
The American Academy of Family Physicians defines care management as 'activities performed by health care professionals with a goal of facilitating coordinated patient care across the health care system.'1 Care management helps people be more satisfied with their overall care and also reduces costs by avoiding unnecessary trips to the hospital clinics.
In fact, I have had care managers from my health insurance company (I have private insurance) ask if I have trouble getting refills on medications, making doctor's appointments, getting to doctor’s appointments, etc. If you need help with coordination, then perhaps ask your health insurance company or hospital if there is care management that you can work with.
In my experience when their people call me, their goal is to keep me out of the ER and hospital. It is much cheaper for them if I am seen on an outpatient visit than with the ER or in hospital admission.
Private patient advocates
Another option, which is not covered by insurance, is a private patient advocate. These individuals are not employees of the hospital or healthcare system and instead are employed by you. This makes a difference in how your needs and goals/priorities are listened to, and they can help advocate with you and your medical team.2
Often these people are doctors, so they can participate in medical appointments with you. They can review your goals before an appointment to ensure you leave the meeting getting the information that you need. They can also take notes so you can concentrate on the appointment.2
The goal of a patient advocate is not to help you with the coordination, but to help you with the communication with your medical team. If you feel like you are having trouble communicating with your medical team or do not feel heard, this is a terrific option!
You are not alone
How can you find someone like this? I would try Google or ask around, especially if you know anyone who is a therapist. You are not alone in having a complex chronic condition, and the medical system is tricky to navigate. If you need help just managing your care, ask around about resources to help you.
If this sounds like what you need, sometimes hospitals have patient advocates as well. I cannot speak to that as I went the private patient advocate route given that I have multiple doctors as a part of my cardiac team, spread out between various medical institutions.
The bottom line though - heart failure is tough. If you feel like you need help just managing the condition you may not realize that there are resources out there to assist! Ask around, and I hope this information helps.
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