As a caregiver for my mom, a time came when I realized I needed help. I wanted to work with someone that I not only felt comfortable with—but who had the skill set I was looking for.
I didn’t simply need help with the laundry and helping me run errands, and I didn’t necessarily need help with keeping my files in order. I needed advocates to help me manage insurance, doctors, legal issues, and more. I needed someone to help me navigate the system!
After much research, I found information on various advocates for me and my Mom. Here are a few of the different types of people that might be able to help you:
Geriatric Care Managers
Geriatric care management is a growing field. Most of these managers are social workers or nurses. A geriatric care manager may offer a visit to your home to assess your loved one’s physical health, memory, mental health status, ability to perform activities of daily living such as getting dressed, eating and toileting; economic resources, and the home living environment.
After a full assessment, the care manager may provide a written “Care Management Plan” that makes recommendations regarding various types of services for your loved one. Care managers are trained to advocate for necessary services for their clients. That means they’ll contact community programs, insurance companies, Medicare and Medicaid, legal groups, and protective services to ensure your loved one has the proper care, equipment, and service he or she needs. Care managers also have counseling skills and can guide you and your loved one through periods of stress, conflict, transition, and grief. Care managers are familiar with service providers and can recommend one that matches the client’s needs.
Care managers are particularly valuable to out of town caregivers who need someone on-site to supervise services for a loved one. Moreover, hiring a care manager can help restore balance in parent-child relationships or when conflict arises among siblings.
Two main types of health advocates exist: one is employed by a hospital, and the other type is employed by you. Health advocates inside hospitals are often referred to as “Patient Advocates” or “Patient Representatives.”
Inside the hospital, most health advocates focus on representing the patient’s rights and desires and will help you, as a caregiver, file any complaints with the hospital. Even if you are confident that your loved one’s wishes will be adhered to, it is good to contact the health advocate at your hospital. If your hospital does not provide this type of advocacy service, and/or you want to have another set of eyes watching out for your loved one, you may consider hiring your own health advocate.
Health advocates work with hospitals to make sure that patients get the services they desire, such as a room with a window. Advocates may also counsel patients on accepting medical care or treatment. They are trained in the legal, ethical and religious issues related to these decisions and they also know who to contact and how to talk to various authorities including hospital staff and doctors.
A patient advocate, health advocate, or ethics advocate may help you and your loved one navigate this most difficult healthcare situation. End of life decisions are ripe with emotions, drama, and politics, but it does make sense to prepare for the future. These preparations for the future are known as “Advanced Directives.”
According to Barbara Maltby, M.A., co-author of the workbook Fidelity, Wisdom & Love: Patients and Proxies in Partnership, the most familiar type of advance directive is a Living Will, which is a written document that states whether or not you would want aggressive treatment if you were terminally ill. A healthcare agent, also known as a proxy, may be helpful in place of, or in addition to, a Living Will. A proxy is a person you legally appoint to make medical decisions for you if and when you can no longer make them yourself. Such a person has special authority to represent and advocate for you. It helps for you and your loved one to discuss care wishes before he or she gets sick.
Under a new pilot program, chronically ill Medicare patients will have access to health coaches to advise them on medical choices and preventative care. The program funds Medicare Health Support Services with 24-hour hotlines to counsel patients and caregivers on issues from heart surgery, to prescription coverage, to advance directives. The hotline will help patients learn to better manage their benefits and the health system. The program started in August, 2005 and operates in Oklahoma, Maryland, and Washington, DC with plans to expend by the end of the year. Contact www.medicare.gov for information on the program and to find out if it’s coming to your area soon!
Contacting an Advocate
The Medicare coaching program demonstrates recognition of the value of advocacy programs. Whether it’s a face- to-face consultation with an expert, or a phone call to help negotiate the system, help is out there. Finding an advocate that’s right for you and your loved one however may require research and persistence. Start by asking your doctor, nurse, friends, neighbors, a trusted attorney, or an eldercare attorney for information on advocacy services.