Making Healthcare Decisions for Me, Part 1

Nancy E. Lundebjerg, MPA
Chief Executive Officer
American Geriatrics Society
Health in Aging Foundation

Have you ever imagined a time when you are unable to make decisions for yourself? Who knows how you would make decisions? What information would you want? What do you think about life-prolonging treatments? Who knows how you feel about dying? Who knows you?

Have you looked at that moment through the eyes of family who may have no—or every—legal authority to make decisions for you? Have you thought about the range of decisions that might need to be made for you—each decision likely leading to another decision and accompanied by concern that someone might not be doing what you would do if you were making this decision for yourself?

We don’t like thinking about those types of things—at least my family doesn’t, and I wouldn’t be surprised if yours didn’t as well. You might, like me, have an advance directive gathering dust in some corner of your home with another copy in the hands of your proxy and yet another copy stapled into a chart for a doctor you haven’t seen in more than fifteen years because you’ve moved on and so have they. You may have completed an advance directive as a part of writing your will, as someone recently told me they had, so you can mentally check it off your to-do list. Health Care Proxy/Advance Care Directive. Done.

But maybe we should start thinking about this as a conversation as one addressing how we would want to live rather than one focused on how we would want to die. I know how I want to die–without a long decline into disability and dementia. I also know that kind of death can be hard to come by. Simply put, in this day and age, we can live for much longer than we could before.

If you look at Advance Care Directive forms, you’ll see that most ask for some specificity. As an example, my home state of New York allows me to check off that I don’t want blood transfusions—just one of the 11 examples that the New York form provides. It’s enough to make my head spin.

To be honest, I am not sure I could outline every possible scenario in a way that would be a road map for my proxy. The thing I know from being a caregiver is that there will be a lot of decisions and a lot of nuances to those decisions. I know they will start small and build to a crescendo. And, at least for me, it’s been helpful to balance sharing my wishes with remaining flexible—not trying to control everything with a lot of instructions. That’s one of the most helpful parts of selecting a healthy proxy when completing an advance directive—you can identify a person you trust to do whatever is in your best interests.

It’s important to have an Advance Care Directive form completed and a decision-maker identified. No less important is empowering your decision-maker to act on your behalf. More on that in my next post.

 

National Healthcare Decisions Day

Today, April 16, is National Healthcare Decisions Day.  I hope that you will take this time to discuss and document your healthcare wishes, or talk to your family members about their wishes.  We all need to be prepared in the event of a health crisis, and having the talk is easier than most people think, but many of us need a little inspiration or a reminder to do it.

National Healthcare Decisions Day was established to inspire, educate & empower the public & providers about the importance of advance care planning.  You can find all sorts of free resources, including free advance directive forms for each of the 50 states and a great short video to get you thinking and talking, on the NHDD website: www.nhdd.org.  Additionally, please help spread the word with TwitterFacebook, and LinkedIn.

Advance care planning is something we ALL should do and encourage others to do, regardless of age or current health.  Discussing your wishes can be one of the most important gifts you ever give your loved ones.

Related Resources from Healthinaging.org:
Advance Directives: Basic Facts & Information
Guide to Advanced Directives

 

Using Feeding Tubes in Patients With Dementia

Ramona Rhodes, MD

Dr. Ramona Rhodes

Healthinaging.org is pleased to feature a guest blog by Dr. Ramona Rhodes.

Ramona Rhodes, MD, MPH, MSCS, AGSF
Assistant Professor of Internal Medicine
Geriatrics and Palliative Care Sections
University of Texas Southwestern Medical Center

 

My Cousin Opal was my paternal grandmother’s cousin.  They were close in age, grew up together, and were best friends.  Cousin Opal was college educated—a great accomplishment for an African American woman born in the South in the early 1920s.  She was a school teacher, community leader, social butterfly, and true fashionista.

I met Cousin Opal when I was in high school.  Cousin Opal was widowed and did not have children.  She had relocated from the Northeast to our small town, and was living with my grandmother at the time.  Cousin Opal began to exhibit problems with her memory, and though the word “Alzheimer’s” was whispered, my grandmother would never discuss it.

Over time, Cousin Opal became increasingly more forgetful, and she would only say a few words.  Food became harder to swallow, so my grandmother would blend things up into a puree to make it easier.  Eventually Cousin Opal stopped talking, stopped walking, and could not get out of bed.  And then, of course, Cousin Opal stopped eating.  My grandmother then made the decision to place a feeding tube.

Dementia is a neurodegenerative disorder (disorder that affects the brain) that results in memory loss and decline in function.  As dementias like Alzheimer’s disease progress to the advanced stage, patients become weaker and more dependent.  They lose their ability to talk, move around, and have a hard time with chewing and swallowing.  As a result, caregivers of dementia patients are often faced with the decision to place, or not place, a feeding tube for nutritional support.

Continue reading

National Healthcare Decisions Day

April 16 is National Healthcare Decisions Day, and I hope that you will take this time to discuss and document your healthcare wishes.  We all need to be prepared in the event of a health crisis, and having the talk is easier than most people think, but many of us need a little inspiration or a reminder to do it.  I hope that this message and National Healthcare Decisions Day are all you need.

Please take some time today and have the talk with your loved ones.  There are all sorts of free resources, including free advance directive forms for each of the 50 states and a great short video to get you thinking and talking, on the NHDD website: www.nhdd.org.  Additionally, please help spread the word with TwitterFacebook, and LinkedIn.

Advance care planning is something we ALL should do and encourage others to do, regardless of age or current health.  Discussing your wishes can be one of the most important gifts you ever give your loved ones.

 

American Geriatrics Society Helps You “Choose Wisely”

This week, the American Board of International Medicine (ABIM) Foundation published the latest of its ground-breaking Choosing Wisely® “five-things” lists, and I’m pleased to report that one of these new lists comes from the American Geriatrics Society. In case you’re not familiar with these important Choosing Wisely lists, here’s a little background:

Two years ago, the ABIM Foundation and Consumer Reports launched the Choosing Wisely campaign to encourage people to learn more about the tests and treatments their healthcare providers recommend, and to question and discuss these with their healthcare professionals under certain circumstances. There are two parts to the Choosing Wisely campaign. Numerous medical societies have gone through an in-depth review process to identify five tests or treatments for which there may not be enough medical research that shows safety or effectiveness. In some cases, the research may even show unwanted effects. At the same time, the Foundation and Consumer Reports have been encouraging people to check the lists to see if tests or treatments their healthcare providers have recommended are on them. If so, the campaign urges people to bring this up with their healthcare professionals and discuss it. Continue reading