Hiring a Patient Advocate

A very smart thing to do!

This is just one more BIG sign that the whole so-called “health care system” is all messed up.

Why on earth should such a thing be necessary? Why shouldn’t it be possible to just go to a doctor — at the beginning of health problems — and get them fixed?

The whole system is turning into a replica of the I.R.S. and the tax code.

Take away the paperwork. All of it.

And take out the huge profit motives; profit is not necessary for doctors and other to make a fine living.

Those two things would go a long way toward ‘solving’ this mess.

Why won’t they just let us die in peace?

Wny is this necessary. Why cant Doctors do this?

AND the biggest problem is not after the diagnosis

Try GETTING A DIAGNOSIS.

If you have a family member with a rare disease as I have , I took 2 years of appointments, co pays, and doctors saying “I DONT THINK WE CAN WORK TOGETHER” ie, I dont have a clue and you seem persistent so I am scared you will be trouble, then writing me off as a “mother has psychiatric issues”. Then when I finally researched it myself, found out what was wrong, rushed to the doctor the doctor writes in the medical record “excitable, and anxiety issues”.

Now we have the clear diagnosis its easy. Stressful yes but everyone follows thye protocols and happy to refer and it all goes smoothly.

But I would have paid anything not to go through the trauma of GETTING a DIAGNOSIS.

it shouldnt be this horrible. Its bad enough having to deal with the sickness.

Am I the only one amazed by the fact that these people charge $200 per hour for their services? Seriously? Pay family doctors $200 per hour, cash (no insurance claims) and I guarantee they would take all the time in the world to explain treatment options to you and your family, research appropriate referrals, battle your insurance company on your behalf, etc. Coordinating care is what they’re trained to do. But unlike almost any other professional in this country (including apparently these nurse advocates) they can’t bill by the hour for their time and thus in our current system have no incentive to do these things…

I am a physician in Baltimore with a patient advocacy practice very similar to the nurse-run practice described in the article. I left “regular” practice because the standard 15 minute visit did not allow me to delve into the complex medical decisions faced by many people with serious illnesses such as cancer. If primary care physicians had enough time to spend with each patient, my services would probably not be needed. But in the current system, when most doctors are stretched too thin, patients facing serious illnesses can benefit from consulting with a physician focused on helping them make the best possible medical decisions. I have heard of a new website that will be a clearinghouse for advocates of various kinds: //www.advoconnection.com.
Dr. Chiaramonte
Insight Medical Consultants
//www.insightmedicalconsultants.com

In the last few years of my medical practice, I began to hear more and more from patients about their friends and relatives who couldn’t get into see specialists in a timely manner and who had troubling diagnoses and were not getting a clear understanding of their treatment options. State-wide I read the California HealthCare Foundation 2007 study confirming my observations, revealing that 4 of every 10 physicians were unable to spend sufficient with their patients and overall care was suffering.
Your article is timely..thank you for it. In order to address this growing problem, I am now offering my services as a healthcare advocate.
Harry Knaster, M.D., MPH

May I suggest the growing peer support groups? They seem to engage patients, family members and friends with many disorders and diseases. They are free or at a quite nominal charge.

Members frequently know a great deal about the problem — often more than physicians and other professionals.

The first such organization was: AA. Who better understands alcoholism than someone who has the same condition?

Support group members not only have practical “street” knowledge — they often have tapped into an enormous amount of literature and other media.

I’m very much for patient advocates in some healthcare situations, such as being there for a resident of a nursing home to see that services are rendered. I think it’s useful for a family member of an elderly patient to go along for doctor appointments to help with issues of patient anxiety and communication.

What I’m concerned about in this article is a new layer of paid intermediary between the provider and the patient, fraught with possibilities of conflict-of-interest, incompetence, and indifference.

With all due respect to the nurse advocate noted in the article, she can’t be expected to know and assess all the latest treatments; many physicians don’t know them. Given the choice of advice from a physician who knows a patient’s medical history and personal desires or a non-physician advocate new to a case, a patient probably should go with the physician’s advice depending on two considerations that are important.

First, a physician must take the time to assess the options and then take the additional time to discuss the options with the patient. If a physician won’t do this, then the advocate might be necessary, but if possible, asking for or getting on one’s own a different physician is a better alternative.

Second, when a physician recommends another physician, find out in some detail why. Is it the physician’s track record, credentials, or other reasons? Ask who else in the specialty needed could be recommended? Note: some undiscriminating physicians might say that another physician is “very good.” That phrase has little meaning to me because it is so overused.

Third, a physician must be willing to recommend beyond her/his hospital or doctor network. That is, get real second and multiple opinions. In my local newspaper today, a hospital has a large ad noting that a local specialist says, “Refer somewhere else? I wouldn’t even consider it.” I wouldn’t want to use that doctor or that hospital. There are top doctors and hospitals ready to help. Don’t be shy. Call them or have a trusted relative or friend do it.

Finally, if you are still going to use an advocate for finding a physician and treatment, first ask several advocates about their qualifications. Don’t accept less professional qualification than is needed to make good decisions for you or you’ll end up all the more overwhelmed and perhaps in a bad medical situation.

Wow- people will pay someone $200 per hour to direct them or go with them to a physician but would never think of paying a doctor $200 per hour for his / her services since they should be free. Maybe physicians should become patient directors and refer patients to nurses and physician assistants! Welcome to the land of Obamacare where more is paid ro directors than to those providing the actual care!!!!!!!

Hey, if Betty Long’s services could help me figure out how to get the best care and treatment for my family, it’s worth the peace of mind! She can probably accomplish much more in three hours than I can!

In my twenty years as a physician, I have seen tremendous evidence of how disempowered people are by the American healthcare system. Whether it is risk of medical error, doctors speaking in jargon that patients cannot understand, or the busy pace of medical practice, it is clear that people simply cannot “go it alone.” As one of the first physicians in the U.S. to start a patient advocacy/guidance practice, //www.MDCanHelp.com , my goal is provide tips on how people can partner with their doctor(s,) become active participants in their care, and get all the information they need. Particularly with the growing shortage of primary care doctors to oversee care, people deserve to have their own physician consultant available to them on their own schedule, in their own home, and looking at the big picture of their care.

Lesley,
Excellent article and shocking news to me that there exists such a gap in the U.S health care system that has fostered and necessitated the field of patient advocacy.
I am a urologist who treats bladder cancer among many other problems, and I was struck by the image of the bladder cancer patient who was “stumped” without an advocate. It evoked thoughts of my own detailed cancer discussions with my patients.
I think of myself as a human first, physician and surgeon second and emphasize patient education, aka, advocacy–making every effort to educate and treat my patients as I would want myself or loved ones educated and treated–with warmth, humanity and compassion. I always try to provide educational materials that I have written myself, to back up the verbal counseling. For example, on our practice website, //www.bergenurological.com, go to patient education and click, for example, on prostate cancer to get an idea of my concept of patient education and advocacy.
Clearly, it is a shame that forces within our system have
spawned the birth of the field of patient advocacy–physicians should have the time and disposition to be our patient’s best advocates–and this includes objective, agenda-less education and the knowledge and willingness to refer our patients to another physician who has more expertise, when indicated.

Andrew Siegel, M.D.