How You Can Know Making Medical Decisions

The latest twist in men’s prostates is very opportune.

 

I should of course say the latest twist in the long and acrimonious debate about whether men should be screened for prostate cancer by measuring their prostate specific antigen. By doing a PSA blood test. Is very opportune.

This latest “neck-snapping” U-turn by the United States Preventative Services Task Force comes at just the right time to reinforce my message of the week. And that message is that anyone considering some medical intervention needs a clear strategy for deciding what to do.

 

 

USPSTF Changes It’s Tune

 

Not long ago the USPSTF (the governmental agency that is meant to tell us which medical intervention is valid and which is not) concluded that measuring PSA was not the right thing to do because a lot of would be harmless, slow-growing cancers (“turtles” as surgeon/journalist Atul Gawande calls them – cancers that old men die with, not of) get over-treated, leading to unnecessary interventions with complications such as impotence and incontinence, not to mention discomfort, inconvenience and cost.

 

Influenced in large part by European Randomized Study of Screening for Prostate Cancer the USPSTF has revised its guidelines somewhat.

 

Now they say that PSA screening may be a good thing for men 55 to 69, but with the proviso that patient and doctor collaborate in informed, decision-making.

 

And there’s the crux.

 

There is growing interest, or even imperative, among patients that they should be more involved in making decisions about their medical care – an idea that my book and this whole website is here to promote.

 

This is an idea that is catching on. Or as biologist/psychologist and world-renowned expert in the mind/body connection, Joan Borysenko puts it "The dominator model so prevalent in western medicine is no longer considered to be the most effective method of healing. People want more say in their treatment.”

 

Good idea. But a survey, reported by The Commonwealth Fund, notes that patients, though they want more information about associated risks, and wanted their provider to listen better, reported that they were not asked their concerns or goals nearly half the time.

 

 

 

Decision Aids

 

 

 

The fix is, maybe be a little assertive with your doctor, but be clear in your own mind what is the right decision. And for this you need a decision aid.

 

Various players in favor of this idea, of people being helped to make their own medical decisions, have come up with a variety of decision aids – one of the best from our Canadian brethren. The ‘Ottawa Personal Decision Guide’ (at https://decisionaid.ohri.ca/decguide.html)

This is a questionnaire you fill out for yourself which helps assess how knowledgeable you are about what you are trying to decide on; how certain you are about your choice.

 

All done, in this case, by filling in answers on a questionnaire with cutesy icons to prompt you. Though other guides use videos, educational literature and/or interactive tools.

 

Guides also ask you to consider your values, and how they affect your decision – in a study of management of advanced lung cancer for example, the second most influential factor, after the recommendations of their oncologist, was the patients faith in God.

 

Financial issues often play an important role also – to not finish up like Alice, who’s story was related by Steven Brill in his emotive article, Bitter Pill, in the March 2012 edition of TIME.

 

Alice’s husband was dying of lung cancer, but “kept saying he wanted every last minute he could get no matter what.” The consequence of this decision was to leave Alice a bitter legacy of bills totaling $902,452 (with a United Healthcare insurance policy that maxed out at $50,000).

 

The guide also asks about who else is involved/affected by the decision; what option do they prefer; are they pressuring you and/or how can they support you.

 

And, despite the fact that this is a tool to help you make your own decision, it does ask do you want to share the decision; make it alone; or have someone else decide for you.

 

Many elderly patients are reported to not want to have to make the decision for themselves, but leave it to their doctor.

 

One slightly wild card in this whole business of people making good decisions is what Joe Borysenko calls the “felt sense.”

 

Our life experiences “create in us sensitivities and dispositions and skills of thinking which can be accessed by attending to a felt sense in your body” and it is important to listen to this kind of bodily wisdom.

 

Though, she councils, people need to be given time to access this wisdom. Be given time to make a decision that feels intuitively correct to them.

 

There are variations in these decision aids. Different guides focus on different kinds of decisions and provide help in different ways. Some examples are:

 

 

 

• Welvie (at https://www.welvie.com/) which helps you make decisions about surgery – do you need it; where to find the best doctor; how to find out about hospitals where you might be operated; how to prepare for it and recover from it.

 

• Health Dialogue at https://www.healthdialog.com/solutions/shared-decision-making uses aids and links to Health Coaches.

 

• The Mayo clinic has a guide to help management of chronic illness. Specifically a guide to help decide what medicines are best for you to treat your diabetes (at https://diabetesdecisionaid.mayoclinic.org)

 

 

 

Information Is Everything

 

 

 

“Information Is Everything” is one of my cheesy maxims. Having good information is vital to making the right decision. But getting good information is a challenge.

 

It’s not like the old days where the doctor was the definitive source. Now days, there’s so much to know that it’s not unreasonable for your doctor not to know all about everything. The good news is you have easy access to almost unlimited medical information on the Internet.

 

This is great, as your doctor could be spinning you any kind of distorted misinformation, which you are using to make some vital decision. But now you can check up on him or her.

 

The caution about the Internet is as noted by Dr. Paul Cundy, chairman of the British Medical Associations technology subcommittee. While there’s much more information available than ever before on the Internet, he notes, “much of it is seriously wrong.”

 

I devote a whole chapter in Managing Your Doctor to how and where to get good information – and it is beyond the scope of what I’m trying to write about here. But just be warned. Be skeptical. Know how to find reliable sites.

 

Decision aids allow people to do as much as they can for themselves; ask for the care they need; and “say no” to the care they don’t want, notes the Mayo clinic. And patients using such guides are noted to have an improved knowledge of the options; feel more informed and more comfortable with the decision they make; and have more accurate expectations.

 

There is also benefit to the provider. Washington state passed legislation that provides legal protection to physicians who clearly document that a decision aid was used.

 

So when your doctor just blithely includes a PSA in your “routine” labs without debate (as happened to me). Or a PSA comes back elevated and you are being told you have to have your prostate removed, you need to insist these should be shared decisions, and use a decision aid to help you make up your mind as to what is the right option.

 

And ladies, don’t feel left out. This by no means only applies to prostate cancer – just that the USPSTF provided a great “hook” to hang this post on.

 

Decision aids/guides are useful for any medical decision. But in particular where there is debate, and different opinions as there is in prostate cancer management.