Patient Advocates: Helping Caregivers Get Healthcare Answers
Have you ever found yourself in any of these situations either as a patient or as a caregiver taking care of a family member?
- Feeling lost in the medical system?
- Not sure what's going on with your elderly parent's health and no one takes the time to explain to you?
- Having questions about health or healthcare but not sure how to ask?
- Feeling like you hardly get any time with your doctor but get an inordinate number of medical tests, procedures, and medications instead?
- Feeling treated like a number in the medical system, rather than a person whose entire needs are addressed?
If any of this applies or has applied . . . keep reading.
Medicine has changed a lot over the years, in some ways better, but in some ways worse. Certainly the technology, medications, and treatment options for various diseases have improved over the years (and continue to improve), but the quality of the doctor-patient relationship has suffered a serious decline over the past several decades, and the main reason for that is the lack of time spent by the doctor with each individual patient.
Less time with doctors, more time spent on medical tests
You've probably noticed this when you find yourself waiting an hour for a 15-minute appointment, in which the doctor is left with only a couple of minutes to explain things to you. Or perhaps you've gone to the doctor with a list of questions and been told he/she only has time to address one (maybe two) questions for that appointment.
Medicine has changed a lot not just for the patients, but also for the physicians (especially in primary care), and the main factor is that time is not really economically valued in the medical system anymore. Medical insurance reimburses a physician primarily based on the volume of patients seen and not so much on the time spent, and because the reimbursement per patient has decreased over time, physicians are forced to see higher volumes of patients in order to stay economically viable.
Even with the 15 minutes they may have for an appointment, by the time you factor in the paper work, the exam, and the prescription refills, that leaves just a couple of minutes left to educate the patient about what's going on, which is woefully inadequate. It's one of the reasons why it is said that at least one out of three geriatric patients don't know what medications they are taking and why. On the flipside, tests and procedures are reimbursed by medical insurance substantially better, which is why you may find yourself getting more of those things and less of a doctor's time reviewing your medical history, which would have been the more efficient way of figuring out what was going on in the first place, except for the fact that it's time-intensive, which is exactly why they don't do much of it. These are the problems that doctors know, but do not talk about with their patients because it's an uncomfortable subject.
Unfortunately these problems are not bound to improve anytime soon. So what's a patient or family member to do in the meantime? Some folks will advocate for themselves by doing their own research. They may talk to patient support groups, go online to resources like WebMD, or post questions in online health forums like the Support Groups on AgingCare. They will accompany their elderly parent to their appointments. All of those things can be helpful, but there are some limitations. Trying to advocate for yourself in the medical system can be like trying to advocate for yourself in court, except for one thing - no one would advise you to advocate for yourself in court, which is why people in legal trouble hire professional "advocates" called private attorneys. In health care, they would be called "private patient advocates." However, there were hardly around until the last five to ten years, and even now the market is still in its early stages of development, with most people (including healthcare professionals) unaware of its existence or unclear what the term "patient advocate" means.
Patient advocate is a very broad term that encompasses a lot of different people doing a lot of different things. This article primarily discusses private professional patient advocates whom the patient or family can hire directly (as opposed to patient advocates that work for the hospital, insurance company, or non-profit organizations).
What is a patient advocate?
A private professional patient advocate is hired by the patient (or patient's family) to directly represent the patient in the health care system. The private patient advocate helps the patient navigate through the medical system, whether it be through assisting them with understanding their health issues and what to talk to their doctor about, finding doctors, dealing with medical billing errors, getting access to health care resources, accompanying patients to medical appointments, checking on them and their care while hospitalized, etc. Private patient advocates include a wide variety of people including social workers, case managers, medical billing experts, nurses, physicians, and even lay people with personal experiences as a patient or caregiver. A growing number of these professionals are forming patient advocacy companies that provide services locally or even nationally. Services provided by private patient advocates are not covered by insurance, and clients are typically charged by the hour. The rates can widely vary depending on who you are hiring and the experience your advocate brings to the table.
For some people, cost may be a limiting factor, but on the other hand the personalized attention one gets for a health care professional personally advocating for them can provide substantial emotional support, better communication in the medical system, and even potentially improve health outcomes. Anyone who has a doctor in the family, for example, has his/her own personal advocate and guide and can tell you what a great advantage it is.
A personal experience as a patient advocate
In my own case, I found myself having to provide such advocacy for my own mother, who had numerous health problems during my formative years in medical training. Her case and care was so complex, it was difficult for her doctors to keep track of everything that was going on, and each specialist was limited in the time he/she could spend. I had the advantage of being able to spend more time to be able to explain to her what the doctors wanted to do and why, explain to the doctors what her health concerns were, look over her records and medical care to make sure things were not being missed, and most importantly, provide emotional support and coaching during periods of health crisis.
During the eight years I spent advocating for her, I was able to give her three years more quality and length of life than what she would have had if I had not gotten involved. It was based on this experience, as well as the limitations in medical practice with regard to spending time with patients, that I formed my own patient advocacy service over two years ago called Houston Patient Advocacy, which serves patients locally and nationally/internationally. There are a number of other people like me that have had similar experiences, either as a family member or as a patient, that have led them to form their own patient advocacy services.
Learn more about patient advocacy
To learn more about private patient advocacy, the services offered, and the companies that are out there, you can go to the website for the National Association for Healthcare Advocacy Consultants (www.nahac.com) or Advoconnection (www.advoconnection.com).
Though the author of this information is a licensed physician, the information provided above is FOR EDUCATIONAL USE ONLY, and DOES NOT CONSTITUTE MEDICAL ADVICE/OPINION, is not meant to diagnose or treat any illness or disease, and is not a substitute for the medical advice of your (or your loved one's) primary care physician or other medical professional. While striving to be factual and exact, no warranties are made with regards to the accuracy of the information provided above. You are always advised to talk with your (or your loved one's) doctor about any health concerns that you have and about any of the information provided above. Sole reliance on the information provided above is not advised and would be solely at your own risk and liability.