As a breast cancer patient, you need to figure out your risk of recurrence with no treatment, and the amount by which each proposed treatment will lower that risk. You also need to know all the short-term and long-term side effects for each proposed treatment, so that you can weigh the risk of recurrence without the treatment against the risk of harm from the treatment. These decisions can be very personal, so nobody should dictate your decisions, but to make them you will need solid information: the statistics for recurrence as well as the statistics for each side effect for each proposed treatment. I asked my doctors these questions, and I got a wide variety of responses. Sometimes I got a paternalistic attitude and a brush-off, and sometimes I got answers. Sometimes I got different answers from different doctors to the same questions, and I did not feel I could trust them. If this happens to you, you might want to hire a patient advocate.
Most people are not equipped to do the research they need on their own. Lay people often have difficulty getting copies of their records and understanding them. They are often unable to get clear and thorough explanations from their doctors. They can’t usually read the research, not only because most medical journals require a subscription and a password, but also because lay people do not usually understand medical language or know the ways of hospitals and physicians well enough to extract the information they need.
The terms “patient advocate” and “clinical advocate” are unfortunate because they can mean many things. If you look them up online, you will get different definitions. Some refer to people who help you with health insurance; some are lawyers who will help resolve disputes; some are case managers. The ones I am talking about are usually medical professionals who will work on behalf of patients for a fee. The great thing about advocates is that their allegiance is to you and they will do what you ask. Although the services of patient advocates are rarely covered by insurance, some advocates will accept payment on a sliding scale.
I imagine that different advocates work in different ways, but am going to describe the services of a particular patient advocate I contacted, who is an M.D. specializing in cancer. I do not have permission to use his name because he only accepts referrals.
After you arrange for him to have copies of all your medical records, he will read them and explain what is going on, which may not be the same as what you were told. You can raise your questions and concerns. You will brainstorm your case together, and decide which case activities and research questions you want to pursue. Research will usually include a review of the medical literature; and sometimes it will be necessary to consult with the authors of the research or other specialists. Because there is usually a huge lag between the time a research study is finished and when it is published, the advocate will often track down people who are doing cutting-edge research in order to get results that are not yet publicly available. The advocate might also want to contact your physicians. Because of his profession, he can usually get a better response than patients can; his calls tend to be returned promptly, and medical records are quickly sent.
You and he will decide what needs to be done, who will do it, and what the time frame will be. Patients participate at every step of this process; if they are too sick, then family members or friends may help.
After the relevant information is gathered, you and your advocate will analyze it and develop a plan of action. At that point, it should be obvious what the best options and the next steps are. Some issues that might need to be considered include evaluating the quality of the care you are receiving; whether you need more tests or consultations; whether other treatment possibilities should be considered; quality of life issues, such as pain control; nutrition; and your psychological, spiritual, and family needs.
The advocate will help you develop a plan. Sometimes the plan will be carried out by the medical team you already have; and sometimes you might need to change physicians. If necessary, the advocate can negotiate with your physician on your behalf or recommend a different physician.
I didn’t have a patient advocate during my treatment for breast cancer in 2011 because I didn’t find out about it until later. To a large extent, my integrative oncologist served the same purpose anyway.
However, in 2015 I got a pinched nerve after I overdid horseback riding. I had never had anything like it before and I didn’t know what it was. It was extremely painful, and the strong prescription painkillers I got from my doctor did not help at all. My internist said he didn’t know anyone to refer me to, so I was calling orthopedists and neurosurgeons who were recommended by friends, and I got the usual run-around—they didn’t call back, or their next appointment was in three weeks. I was finally able to see one, but he recommended back surgery, and he scared me. Then I remembered patient advocates and I decided to look for one. I found some advocacy organizations on the Internet and made contact with several advocates who I thought could help me make medical decisions. I hired one, a Ph.D. and former microbiologist, and she immediately got me in to see the head of neurosurgery at a major hospital. She went with me to the appointment, to make sure I was treated well and that I received all the information I needed. She took notes, and she emailed me her summary, as well as next steps for me to consider. She also sent me to a physiatrist for pain control. I had never heard of physiastrists, but they are medical doctors who specialize in physical and rehabilitative medicine, and pain. My advocate got me started on the right track.
You can start looking for an advocate by asking your doctor or your cancer center for a referral. Some health insurers will pay for an advocate, and some employers belong to advocacy organizations. In that case, you might check with your insurer and your employer to see whether they can give you a referral. Here is a statement from the AARP website:
Enlisting a doctor or nurse to be your health advocate can be costly, but there are options. You can hire someone from a home health aide company or organization. These advocates work by the hour. Fees range considerably — from as low as $15 an hour (often with a minimum number of hours) to much higher — depending on your needs, where you live and other factors. Some health insurance plans cover these services. And some employers provide benefits for this through membership in a patient advocacy company.
If you can’t get a good referral, you can always use the Internet, which is what I did. When I Googled “Patient Advocate,” there was a lot of information, but after weeding out organizations that required membership, and organizations that were in other parts of the country, I could find only one free, nationwide organization that provided matches with the kind of advocate who can help with making medical decisions. It’s the one I used to find my patient advocate: The AdvoConnection Directory. Here is what they say on their website:
The AdvoConnection Directory is free to use. All advocates and navigators found here are located throughout the United States and Canada. They are members of the Alliance of Professional Health Advocates and are ready to help you solve whatever problems the healthcare system has put in front of you. Their services include advocacy, navigation, case and care management, medical billing and claims assistance, home health, eldercare services, pain management and palliative care consulting, mental health advocacy, dental advocacy, mediation services and more. Find a master list of services these advocates and navigators provide. Most will charge a fee for providing their services.
You can click on Find an Advocate, fill out a form, and you will receive a list of advocates you can contact. When you contact each advocate, you should make sure he or she provides the services you want and get a written fee estimate. Ask what experience they have with similar cases, get a résumé, and check references.
There is another organization that doesn’t provide the same services, but they provide other services you might need: Patient Advocate Foundation. Here is how they describe their services: “The Process is Simple. Patient Advocate Foundation’s Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.” If you need any of these services, this organization may be for you. They also have an affiliate, the National Patient Advocate Foundation, which is a lobbying organization in Washington, D.C. Here is what they say about themselves: “We are the advocacy affiliate of the Patient Advocate Foundation. We translate the individual experiences of patients who have been denied access to affordable, quality health care into national and state policy initiatives.”