Is Patient Empowerment a Myth?

One of HW's reason for being is to provide peer support for patient empowerment.

The following opinion piece from Medscape questions this idea. She defines empowerment as "the process of becoming stronger and more confident, especially in controlling one's life and claiming one's rights. Patient empowerment involves shifting authority or power to patients so they can make more informed healthcare decisions. I wanted to teach my patients, to share information with them so that they could take initiative and make decisions to solve their own problems and improve their health."

She points out that some patients don't want to be empowered, and some doctors don't think some of their patients are capable of it. With busy doctor schedules, there is just not enough time to get patients up to speed.

Here's how she concludes:

Pamela Wible said...
Maybe "patient empowerment" is an oxymoron. A patient is usually captive waiting for medical care (which requires lots of patience), whereas empowerment assumes taking charge and having authority. The concept makes little sense. And it makes even less sense in the newborn intensive care unit, and emergency department. Some patients are simply incapable of shared decision-making.

So who holds the real power in the healthcare system? It's not the patient. And lately, it's not the doctor. Most docs I know are disillusioned—or worse. Assembly-line medicine has changed the medical landscape so that both doctor and patient are victims. Neither are particularly empowered.

/www.medscape.com/viewarticle/886159_1

The following study agrees that more time must be spent between clinician and patient, but also highlights the role that peer support (that's us!) can play. The study makes the following recommendations:

Chiauzzi said...
Clinicians: Greater attention needs to be paid to helping clinicians provide sufficient time to develop mutually acceptable treatment goals with patients, as well as attend to informational needs in difficult-to-treat conditions.

Patients: Educating patients about the importance of seeking support to improve knowledge and a sense of control may enhance empowerment, particularly in difficult-to-manage chronic conditions.

Researchers: Interpersonal and intrapersonal factors in empowerment have been identified but further research is needed to examine causal relationships among key constructs

/link.springer.com/epdf/10.1007/s40271-016-0171-2

My first reaction is that no one, neither the patient nor the doctor, really wants responsibility for making life-and-death decisions. We all want the necessity of making such decisions to just go away. What if we're wrong? The patient hopes that the doctor is omniscient and therefore capable of playing God. So I think we have to first of all acknowledge that none of us has crystal balls, and that we are trying to make important decisions under uncertainty - uncertain outcomes, uncertain diagnostic info, uncertain research statistics, and uncertainty over how we will feel about it all in the future. Then we enter into a partnership with the doctor, holding neither accountable as long as we both do our best and don't screw up, where we proceed with humility and mutual respect. Only the doctor has the practical expertise, and only the patient knows what is most important to him. They can and should both raise options for mutual consideration. It is the mutuality of the working relationship that is the proper goal of patient empowerment. It's a scary thing to commit to, but I think it's unfair to lay the entire burden on the physician, and it's a responsibility that we can't really give to anyone else.

I knew nothing about prostate cancer when I was first told I had it - very close to 10 years ago. I have taken it as my responsibility to learn enough about it to feel at least slightly comfortable playing a role in the decision making of my treatment. Knowledge gives me at least a sense of power - although my doctors seem to have the most control over the course of treatment. Decisions made may not show you results for years down the road.

One thing I'll say about prostate cancer: it brings a whole new meaning to the term "patient".
Jeff (never have decided whether "I'm patient" or "impatient").

If one wants to quibble about semantics, true patient empowerment may well be a myth. And, I think the comments about assembly-line medicine making things difficult to impossible for true patient education are right on point.

The key idea, though, is that patients who are kept in the loop are better off. And, yes, in the ER or the NICU, patients and families are generally not well equipped to make real decisions (and, having been through it recently, relatively few of us are probably equipped to make end of life decisions for our elderly parents).

What is the answer? I don't know. It's not simple or obvious.

I think that experience is the teacher and mentor, if someone is willing to educate themselves.

Ten years ago, when my psa suddenly tripled (a spike), I would have followed ANY advice that the god-like urologist dictated, including RP. What did I know, and he could CURE my cancer. Luckily, we did a free psa, and he told me to check back in a year, avoiding any rash action.

Today, with a lot of years, both with age and with diagnosis, I would question any suggestion, such as another biopsy, even if it came from the top authority, if I thought he was applying some nomogram, which I felt an exception to. Oh yes, would dispute and make them prove (unless it was common sense obvious).

Newly diagnosed men don't have that confidence. But, they can acquire it, fairly quickly, by diving into research, forums, and support group meetings.

I wouldn't want to be an uninformed patient. Medicine is all about statistics - what will lead to the best outcome on average over a large population of patients. It's important that we as patients understand that when reading medical news. It's also important that we understand that when picking the brains of our doctors. That's what they are there for -- to offer judgment and guidance based on their experience (more extensive than ours) and their knowledge of new research (which may or may not be more extensive than ours). Decisions are easy when it's a matter of setting a broken arm. They are much more nuanced when it comes to conditions like prostate cancer where what to do next is much less clear-cut.

Eleven years ago, when I started on this prostate cancer odyssey, I was already familiar with the medical community. I had been dealing with an early diagnosis of extreme hypertension and high cholesterol as well as a severe degenerative spine condition and idiopathic neuropathy . So pain, pills, mri's and various medical offices were no stranger to me. My father's early death due to heart disease and stroke had alerted me to my possible future.

I really felt that I was empowered, that I would ask the right questions and follow the correct path to protect my health. So when my PCP informed me that due to my PSA (whats that?) and a found nodule indicated that I should go see a urologist about "PROSTATE CANCER".. I was ill prepared to deal with the next part of my medical journey. My urologist came highly recommended and explained he was the local head of robotic surgery at a well respected regional medical corporation. He didn't tell me that he had only about 90 procedures under his belt. I didn't find that out until later, and even then did not see it as a problem.

To say he bullied me would not be true, but he did push ahead telling me this was the best option for a Gleason 8 diagnosis. (what's a Gleason?) I tried my empowerment stuff, but he said he was the expert and 11 years ago there was not as much information out there. I moved slowly, but that was more a product of scheduling rather than searching for alternate treatments. When I asked why two of my friends had been treated with something called "brachytherapy", he said it wasn't the right treatment for me. and I believed him.


So what has Empowered me? This forum. Yep, after 11 years, I still click on to find new things and hear new stories. My condition is "somewhat stable", so I might or might not need further medical intervention. But I am better armed now to help make those decisions. Empowered..Your doctor is not necessarily your best source of information about your condition. There are (particularly with Pca) too many variables.

Good points,add in this thread, and I think what it does is point up the value of a forum like this FOR THOSE WHO WANT TO BE EMPOWERED.

I'm amazed that 3 of my friends/family members who have been treated for PC did not even know their Gleason score. So many patients as was alluded to, don't want to or are not capable of, being involved in their decisions about the best course. After all, it's a heavy burden, making your own decisions about a disease that could potentially shorten your life, or ruin your QOL.

And many, are just emotionally incapable, just can't deal, want to be told what to do.
Which makes it even more of a ...can't find the right word, so I'll use "crime" in a figurative way, ....that so many doctors are salesman (I actually had one surgeon say to me "look, the reality is that we're all salesman" in referring to him and his colleagues.

The people here, I think, come here for information, and find that they want to be empowered, so they stick around. It's been noted in the past, not as a pat on the back, but as a fact, that we, collectively, are a special group, unlike the general population.

Well said, my friend. And I suspect that many doctors feel just as hamstringed by the system as we the patients feel.

And, Prato, you're so right: many, many patients don't want to be empowered, they don't want to deal with the questions and learning what would benefit them. And, I suspect, that a lot of the medical paternalism we see is a function of what the majority of patients want: Tell me what's wrong with me, assure me you can fix it, and tell me when I can get on the schedule. Doctors are so used to that role, that the questioning, digging, thinking patient is not deal with kindly because it's outside of their typical day.

Patient education is not much better in Europe. This study from Netherlands shows that men ready for decision have a poor understanding of how their treatment decision will affect their lives.
Prostate cancer patients unclear on differences among treatments
- Two-third of the patients did not understand that the risk of disease recurrence is comparable between RP and RT.
- More than half of the patients did not comprehend that RP patients are at greater risk for incontinence and erectile dysfunction, and less at risk for bowel problems compared to RT patients.
-Almost half of the patients overestimated the risk of requiring definitive treatment following AS, and did not understand that mortality rates following AS, RP, and RT are comparable.

Often empowerment doesn't just happen; you have to do what you can to make it happen. The medical care system is just another system that one can either just cede one's autonomy to, or that one can maneuver within to one's maximum benefit, being assertive when it's called for.

I approach an interaction with a doctor with the expectation that we will be professional colleagues collaborating in dealing with my health issues. Toward that end I try to become well informed on the terms and issues involved, so that I can at least appear knowledgeable in the questions I ask (and believe me I will come in with questions). But there's more to it than that – I dress well for situations where I'm going to meet with doctors (either as a patient or as an advocate for someone else who is a patient), and I do try to get our doctor-patient conversations to be a first-name basis. I also make an effort to have a positive interaction with everyone I encounter along the way – it's useful to build up good will that you can call upon when you need to push for something. It helps a lot that I'm a professional myself, and while it's possible for anyone to approach the medical system with their best foot forward, to try to gain respect and better care, the truth is that the way I go about navigating the system probably isn't within the capabilities of most people.

The patient gets empowered by researching his disease and staying abreast of treatment Results and advances. This website is one place to do that. Letting the physician do all the work is unhelpful and frankly risky. I’ve found that being educated allows me to ask good questions and push physicians to be aggressive with treatments for me as a very high risk patient. I don’t think I’ve left much on the table in terms of treatments. At the same time I know who is the expert and it’s not me. My physicians and I are a team.
Bob

I had been on this site, just standing in the wings listening, for over a month before BX and then DX. Then another several weeks of "INTENSIVE" listening and by then asking.
When I began seeing surgeons and RO's, everyone commented on how well informed I was. I consider myself to be a beginner, barely knowledgeable at all.
Last week I saw a new PCP. I am a Vet and all of my records are with the VA so I didn't know how much of my past the new PA/PCP could or did find out about me so I created and took with me a print out of the last 8-10 years worth of Cholesterol, PSA, A1C, BP, weight, medications to include herbals and several other items. He was absolutely floored by it but when he recovered he stated " we are going to be able to take good care of you" I knew that I had found a PCP that I could deal with and feel totally comfortable with. He did what I asked of him at that visit and also suggested things he felt needed to be addressed.

I feel that a medical professional should always inform the patient, as in an earlier comment concerning never having had a PSA test and then complaining. A Med professional should be telling any man past 40YO about the implications PRO/CON of PSA testing and then leave it to the patient. That failing is why I am dealing with PCa today at age 69 instead of, most likely, at age 65 and with a lower GS. Not that treatment would have been much different but at least it would have been my decision instead of the PCP's.

May all beings be well.

Wow what a great thread, I believe that our world has changed so drastically in the last 20 yrs. and it has completely turned us into an instant gratification society which is so sad especially when it comes to a serious disease like we have. Just turn on the tv there's a pill for every problem we have, now we are getting blasted with medicare plans that all look just peachy we carry around a computer in our pockets that have more power than the computers that first sent men to the moon. The age of information is absolutely fantastic but at what cost? Yes for us guys that want to learn about our disease it's great but then we go to a doctor who because of the health care system which is only interested in the bottom dollar the doctor can't spend the time to take advantage of this and thus form a team with patient and doctor for what's best for the patient. I have a good friend who's a doctor and a pilot we were at the airport the other day and he was wound up like a fiddle. He said they are now considering cutting back some of the requirements for med school and using the web to replace it. He showed me the web site on his iphone where you just put in the symptoms of the patient and it pops up the diagnosis, and the treatment options usually almost including drugs of course and baam your done on to the next one. I have had 3 major surgeries this year and in only one of them have I seen my doctor the second time it's always a nurse practitioner or physicians assistant that you see after. The other thing that really sets him off is the people that are grossly overweight, drunks, and druggies that come in week after week demanding treatment he said wouldn't it be great to tell these people go and don't come back until you are ready to take responsibility and do something about your problem instead of just coming to the clinic or hospital for another drug. Like he said then they would have time to spend on people that have a serious medical condition. Isn't it sad that most of the police depts. in the USA are now carrying Narcan to combat Heroin OD. So what I guess I'm trying to say without the web we wouldn't have this forum and be able to access so much info about our disease but we have to be diligent, informed but remembering to always keep a balance with our info and the doctor's experience and knowledge not always easy to do.