September 3, 2017

Don't be afraid of palliative care

There was a worthwhile guest editorial in the Des Moines Register a few days ago contributed by my friend, Dr. Yogesh Shah, directive of Palliative Care at Broadlawns Medical Center, and David P. Lind, President of Heartland Health Research Institute.

A crucial part of health literacy is understanding the distinction between terms such as "palliative care" and "hospice care."  Take a moment to read this essay and add a nugget to your wealth of health literacy resources:   "A Better Iowa" in The Des Moines Register.

July 28, 2017

What is health literacy?

I used to be among the legal and health care professionals who harped about the importance of having a plan for end-of-life decision making--we call it Advance Care Planning. Then, while updating my 2006 book on advance directives, I thought back on all the people over the past decade who have shared their stories of journeying through the health care system. The common theme as they traveled alongside sick and dying loved ones? "We would have made different decisions if only we'd understood."

A light bulb moment for me. Advance Care Planning is just one piece of the health literacy puzzle.  Health literacy is recognizing when, how and where to access, process and understand basic health information and services needed to make informed decisions concerning medical treatment and care. It's not just about end of life--it's about having a system in place to deal with all the medical decision-making demands of preventive, routine, emergency and--yes, of course--end-of-life care.  

Stop and think about how you would go about making a decision if you got a critical medical diagnosis, or in an emergency, or at the end of life. Become health literate and be empowered to preserve your rights as a patient.

May 11, 2017

Getting sick isn't for dummies: The case for Health Literacy

You probably already know where I stand on the issue of Advance Care Planning and the importance of thinking ahead about your answers to these questions: "When is enough enough?" and "If you are ever too ill to think or speak for yourself, who do you want to speak for you?"

Advance Care Planning focuses on the end of life and it goes hand-in-hand with Health Literacy. But Health Literacy is about the lifelong practice of informed decision making and recognizing when, how and where to get the answers you need in any health care situation.

I am pleased to have a guest editorial in today's Des Moines Register on the practice of shared decision making, which is the cornerstone of Health Literacy.

May 11, 2017 Des Moines Register Guest Editorial on Health Literacy

I hope you can take a few moments to read it and think about your own readiness to deal with whatever comes along in your health care journey. Be well.

April 18, 2017

And Advance Directives aren't just about end of life

I used to think, like many of my legal peers still do, that Advance Care Planning is only for people who are terminally ill or irreversibly unconscious. Not so. Advance Care Planning is just one element of health literacy. When properly done, it's a plan to recognize how, when and where to access the health care information you need to make informed decisions in any health care situation. That may be preventive care, routine care, emergency care, and, yes, end-of-life care.

Please see my article posted on LifeZette today concerning the real significance of National Health Care Decisions Week:  "Taking the Pain Out of Medical Decision Making"

April 14, 2017

Advance Directives are not just for oldsters

If you think about it, the three most well-known cases about the use of life prolonging measures were the court battles concerning Karen Ann Quinlan, Nancy Beth Cruzan and Theresa Marie Schiavo. All three were young women in the 20s when they became vegetative and had to rely on a ventilator and/or feeding tube to survive.

I'm pleased to have been a contributor to this timely article in the Huffington Post about the need for Advance Care Planning at any age: "I'm young and healthy: Why do I need an Advance Healthcare Directive?", written by Monica Mizzi.

Please consider the value of planning ahead for medical decision making--no matter what your age.

April 4, 2017

Taxes and death . . .

Is it a coincidence that National Health Care Decisions Day falls the day after Tax Return Filing Day? What's the thinking here: as long as you're depressed anyway, might as well start thinking about death and dying?

I prefer to approach Advance Care Planning with a more positive attitude. It's an invaluable opportunity to preserve your right to informed consent by having a say in the medical decision making that will affect you. Simply put, it's the answer to these two questions:

When you do you think enough is enough?  and

If you are ever too ill to think or speak for yourself, who do you want to speak for you?

Find a good Health Care Advance Directive (may I suggest a visit to, a user-friendly form that 1) serves as a guide for medical decision making for you and your proxy and 2) respects your autonomous right to specify the care of your choosing.

Education, Delegation, Communication and Documentation. Just do it.

February 11, 2017

What's your health care IQ?

Health literacy is the ability to obtain, process and communicate the health information needed to make informed decisions and to preserve one's constitutional right to privacy and due process. Nonlegalese: Health literacy is knowing what you need to know to protect yourself in today's health care system.

* A national study of health literacy by the U.S. Department of Health and Human Services (HHS) concluded that over one third of American adults have basic or below basic health literacy skills (e.g., difficulty reading a chart or following simple instructions), far less than what’s needed to fully function in today’s complex health care system. 
* Between 1966 and 2010, over 130 studies were conducted on the relationship between health literacy and health care. Not surprising, they concluded that lower health literacy is associated with more emergency room visits and hospitalizations; less preventive care; improper use of medication; and, among seniors, poorer overall health and higher mortality. 
* The lack of health literacy in America is not exclusive to patients. A series of studies have revealed alarming misconceptions when health care professionals are asked to interpret and apply advance directives and Do Not Resuscitate orders in a medical emergency. 

Surprised by any of that? The next time you have a serious conversation with a health care provider--whether concerning your own health or that of a loved one--practice shared decision making:  The provider learns as much as possible about the patient’s lifestyle, personal goals, concerns and values; the provider offers alternatives that respect the patient’s treatment and personal goals; together the patient or proxy and provider consider available options; and, finally, truly informed consent for a treatment plan is granted. 

Be an informed patient. Ask questions. If you don't understand the answer, ask again.

January 13, 2017

The new Secretary of Veterans Affairs

You may not have noticed amidst all the yada-yada-yada over the past few days, but President-elect Trump has announced the nomination of Dr. David J. Shulkin as Secretary of Veterans Affairs. Every single member of any president's administration bears the important burden of not only making lofty bureaucratic changes, but also of potentially impacting the lives of real people. In light of the scandals plaguing the Department of Veterans Affairs over the past few years, we know that the actions of its leader can truly be a matter of life and death.

I am pleased to have been invited to share my expectations for this nominee on LifeZette: "Veterans Counting on Trump to Get Their Health Care Right".

We should hold all policymakers to the highest standard, but let us be especially vigilant when it comes to keeping our promise to care for veterans, a commitment we made over 240 years ago. God bless our veterans.  

January 11, 2017

Setting expectations for the unexpected

Have you ever accompanied a loved one to the doctor and heard a diagnosis you just weren't expecting? Or have you had the same experience regarding your own health? If so, you might recall a loud buzzing in your ears and not having a very clear memory of what followed "Well, here's what we know . . ."

First, consider taking an "appointment buddy" with you anytime you visit the doctor. Another set of ears--and a note-taker--can be invaluable. Second, here is a useful tool from The Agency for Healthcare Research and Quality, which is part of the U.S. Department of Health and Human Services:

The 10 Questions You Should Know:

1. What is the test for?
2. How many times have you done this procedure?
3. When will I get the results?
4. Why do I need this treatment?
5. Are there any alternatives?
6. What are the possible complications?
7. Which hospital is best for my needs?
8. How do you spell the name of that drug?
9. Are there any side effects?
10. Will this medicine interact with medicines that I'm already taking?
AHRQ web site

And I would add:
11. Can I call you if I think of any other questions after I leave here today?

There's a reason we call it Advance Care Planning. Print this list of questions, put it in your wallet and I hope you never need it. But, just in case you do . . .

January 5, 2017

January: A time to review and renew

There's something about January that makes it the best time to take a look at your important legal documents, consider whether there are any changes that need to be made and start the year by checking that off your to-do list.

Estate Planning:  Any changes to your financial situation or named beneficiaries that need to be addressed? And, yes, that includes the fact that your existing Last Will & Testament provides for a guardian for your now 37-year-old son. It's time for an update.

Health Care Advance Directives: The simple rule of thumb is that if there is any change to your wishes for care in the event of incapacity or your appointed health care proxy is no longer able, willing or available to fulfill that role, it's time to replace. Don't try to make changes to existing documents, it gets too messy and probably won't comply with witnessing or notarization requirements. Just execute a new document and distribute to your proxy(s), primary physician and anyone else who might be around in a medical emergency. Go to Jo's Health Care Advance Directive forms.

Happy New Year!