Most people with chronic conditions have probably heard or read that it’s a good idea to have an advocate at medical appointments, when you are hospitalized and to help you navigate the medical system.
So who makes a good advocate-spouse, best friend, parent, adult child or some one trained in that role? When do you need them? What do they do? Can I hire one? Where do I look for one?
Advocates can fill a number of roles. Simply put, an advocate helps to make sure you get the care you need and want, medically as well as at home. Because many advocates are often family and/or close friends, they can also be the one helping to care for you physically.
With the majority of people living for many years with a chronic condition, the role of advocacy has taken on a new meaning in the last several decades. Providers have embraced the idea that it’s up to the person to decide about how they want to live, whether to do treatment or not, what type etc. In short, the more complex health care becomes, the more choices we have and the more we are asked to make them. An advocate can help make a lot of this easier.
Start by addressing how you would use an advocate. Do you want them to go to appointments with you or the person you are caring for? Do you need help figuring out treatment options, insurance forms, payment plans, care at home, clinical trials and/or how to navigate the health care system?
If you, or the person you are caring for, are in need a personal care attendant, keep in mind that some will have good advocacy skills. Others may be excellent at meeting personal care needs, but are not comfortable with a strong advocacy role. For the most part, an advocate that you hire isn’t going to do the personal care.
As noted, you can hire a nurse manager or care manager. However, many people with chronic conditions can’t afford it. Since aspects of advocacy are covered by medical (care) and service managers (social workers), and hiring an advocate can range anywhere from $35 to $200 an hour, start by finding out what type of advocacy resources are available from the following:
• The local chapter of a condition specific organization, e.g. The Diabetes Association l A growing number of groups are offering advocacy training and some even have trained staff who can act as your case manager.
• Independent Living Center for your state Call 713-520-0232
• Medical center, hospital or clinic where you receive your care.
• Offices on Aging, Senior centers
• Cancer centers and other condition specific centers within a medical system, e.g. Motion Disorders Clinic, often offer peer-to-peer advocates.
• Support group: Often through these groups, people become each other’s peer advocate.
Depending on the community where you live, churches and even local ambulance services can offer some advocacy related services. You can always dial 2-1-1, the state specific helpline, and ask about advocacy resources for your community. Eldercare Locator connects older Americans and their caregivers with sources of information on senior services, including case management. You can also reach them by calling 1-800-677-1116 weekdays, 9:00 am-8:00 pm.
Peer-to-peer programs can be very helpful in assisting you in navigating the healthcare system, making decisions and identifying community resources that will be helpful. These programs are often free.
Who makes a good advocate? Truth be told it may not be your spouse, partner or best friend. It can be hard for them to be objective about the information and choices being offered. You may not want to share certain aspects of your with them. They also may not have the background or skill sets to deal with getting you in quicker to see a doctor, dealing with your insurance company or actively listening. It’s sometimes best to have a neutral third party.
These are things an advocate can do for you:
At a Medical Appointment
• Can help you prepare for the visit by going over various issues and problems you may be experiencing. They can be a “check and balance” to make sure that all of your questions are answered and an effective plan is in place before you leave.
• Take good notes during the visit with the medical provider.
• Listen objectively and can discuss with you what went on at a visit, hospitalization etc.
• Will provide you with a good written summary of office visits.
• With your permission, can speak on your behalf during the visit about issues and concerns you might be having and make sure that all questions are answered and a follow up plan is in place.
• Will keep your confidence and not discuss what happens with others unless you direct them to do so.
At the Hospital
These recommendations came from my colleague Grace, who not only has been a long standing board member for the non profit I am co director of, but has lived for many years with multiple chronic conditions:
1) Be an advocate for the person who is ill. Speak with (polite) authority to his/her medical providers and make it clear what you know the patient needs and what you reasonably expect them to offer.
2) Question procedures and prescriptions, making sure that what the provider is doing is not going to have a detrimental impact on the patient.
3) Explain the patient’s home situation to the doctor so (s)he will prescribe outpatient care and prescription medicines that are realistically affordable for the patient and can actually be realized; it does no good to recommend physical therapy or “third tier” medications if the person can’t afford them or has no access to get treatment.
4) Act as or organize an information conduit so the patient doesn’t have to answer dozens of phone calls from friends asking the same questions over and over again about the state of her/his health. Make sure other family and friends are informed as much as the patient wants them to be and request that calls be limited to encouragement and support instead of asking for daily healthcare updates from the patient. Also, be willing to return calls on behalf of the patient so (s)he isn’t overwhelmed with inquiries when (s)he doesn’t feel up to talking.
5) Offer to take care of some of the daily responsibilities the patient may have at home or organize a group of volunteers to help out: feed the pets, mow the lawn, shovel the snow, take in the mail, do the laundry, clean the house, do whatever makes sense to alleviate the patient’s worrying about what (s)he will find upon coming home.
For more information about advocacy during hospitalizations
Hospitalized: What Family and Friends Can do
Hospitalized What Family and Friends can do Take 2
Hospitalized Consumer Reports Study
• Help to arrange services so that you can remain at home. Such services might include: transportation, home health, meals, hospice, housing, fuel assistance and more
• Handle insurance and payment issues.
• Deal with work related issues.
Keep in mind, with the baby boomers now turning 65, there is going to be a growing demand for health advocates. Don’t be surprised that even if you qualify, the service may not be available any time soon. Therefore, as noted in the November post on social networking, staying connected with family and friends can help you draw upon advocates when you are most in need. To help them help you, share with them the post How to be a Friend with a Pen.