End-of-Life Planning for Young Adults

As the Professor of Health Law in the Department of Health Care Administration at Trinity University (San Antonio) for the past 19 years, I have always taught my graduate students about the legal issues involving end-of-life care.

Yet again this summer as I looked at my students’ earnest faces, I was reminded of the coma patients I cared for when I was their age and a neurosurgical nurse. My patients were mostly all in their 20s too.

It is commonly understood that it is important to put in place legal documents that will help if we can’t speak for ourselves about our own medical care, but we do this when we are in our third third of life.

Young adults need to be planning for the unimaginable as well.

I would like to speak directly to those of you who are young adults (or to them through their parents who are reading).

From my own experience, I know that deciding how to care for young people left in a suspended state is one of the most difficult times in health care, but more importantly, a cruel crisis for those patients’ families.

Please understand I am not suggesting that any document or preplanning will diminish the horror if your young life is destroyed by a serious head injury. What I am saying is you should be talking about this when you can. Should the unimaginable happen, at least we will know what you want us to do.

You might be thinking that your State law would help your family if they wanted to determine what to do about your medical care if you were incompetent, and that may be true. And you might be knowledgeable about processes that have been in place for decades that allow loved ones to make tough decisions about life supports under terrible conditions. That might be true too.

But wouldn’t it be better to know there was no question about how to proceed if you were ever in a situation where you could no longer choose for yourself? Wouldn’t you rather decide what you want so you do not put your loved ones in the position of having to speak (and possibly have to fight) for you?

Does a Living Will Mean I Want to Die?

An unfortunate misunderstanding about end-of-life planning is that most people think a “Living Will” is synonymous with the termination of life supports. Nothing could be further from the truth. The whole point of documenting your wishes is that it is your wishes, and it isn’t your choice if there is only one option.

Do you want to be kept alive at all costs? Do you want a feeding tube if you need one, but not a respirator? Would you like to die at home? Do you want to be an organ donor? Most important of all, who do you want to be your legal representative who can speak for you if you can’t speak for yourself? These are the type of decisions you need to make for yourself while you are competent to do so.

What Do I Do Next?

DECIDING how you feel about your own future- if everything goes very badly- is the FIRST STEP of Advanced Care Planning.

The SECOND STEP is closely related, and that is to LEARN about your options. Fortunately, there are great resources available to you through the American Academy of Pediatrics, the Mayo Clinic, the American Bar Association, as well as your insurance company, state government and your place of worship. Speaking of which, many of you will want to talk to your pastor, priest, rabbi, imam or whoever is your spiritual leader.

Having made your decision, the THIRD STEP in this important process is to TALK to whoever will speak for you when you can’t (your loved ones and whoever you want to designate as your decision maker). Those you hold closest need to be included in this very private decision of yours.

NOW you need to talk to your doctor, or whoever your primary care provider is. If they don’t know what you want it does not make much sense- right? Advanced Life Planning should not be a secret!

And, as a final and FIFTH STEP, make sure you have everything PROPERLY DOCUMENTED to support your decision if that time ever comes.  There are some documents that require a lawyer, but at a young age, I would argue that a handwritten document expressing all of the above is a very good start. Fortunately, there are state specific suggestions for Living Wills freely available on the web- find out what your own state requires.

That is a quick review of an important subject, but it is good, and not of my creation. It is a summary of an excellent 1.5-minute video from Speak Up; other tools for advanced care planning can be found at their website.

Another excellent organization is “a community of mostly 20- and 30- somethings” that encourage their contemporaries to consider their own choices. Check them out at The Dinner Party.

But I Don’t Want To

Does this all sound like a lot of time and effort? Do you hate talking about death, dying, and terrible things that could happen?  Do you think this is much too serious a conversation to have at this point of time in your life?

I understand- but think about the alternative.

Regardless if you want every new technology or comfort care only- your only alternative is to speak for yourself proactively- before you reach that point. And that time is now.

Want to Know More?

The process I just outlined is the same for anyone of any age who wants to be proactive in planning their own end-of-life.

But there are some added wrinkles and benefits for the elderly or those of us who are approaching “elderly”. Remember the Death Panels and concerns about what the Affordable Care Act had in store for us? I will be getting back to that in my next Fontenotes!