With these legal documents in hand — Do Not Resuscitate (DNR), Medical Power of Attorney (POA) and Advance Directive (AD) you have one thing — Legal Control. Without these properly executed documents you have no control over medical decisions and treatments. With them you have a fighting chance of having a say over medical treatment — and life/death decisions. With Alzheimer’s or another cognitive illness, you need to understand that eventually your loved one won’t have the ability to make the reasoned decision needed for their best interest. And, it is likely the day will come sooner than you think.
If you wait, and cousin Freddy, or the hospital administrator, or a doctor, can show that your loved one, Mary, wasn’t “competent” (in a legal sense) to understand the papers she signed — your control is out the window. Say cousin Freddy’s spiritual beliefs mandate that he make every effort to save a life — no matter how ‘terminal’ Mary is. All he has to do is show that Mary wasn’t competent to sign the papers that say that Mary doesn’t want extraordinary procedures to extend her life.
Disputing Mary’s competency is a mechanism that accomplishes the goal of extending Mary’s life as long as possible and subverting Mary’s wishes and your goal of carrying out Mary’s wishes on her behalf. Often the hospital is inclined to support this legal mechanism. Why? Both for financial reasons and because extending life is what they do.
So you need to get all the legal papers signed early on in the disease, or as early as you can (and hope cousin Freddy doesn’t read this). Every state has a version of all of these documents. They may be called different things in each state, but the intent is the same. These documents give you the right to act on your loved ones behalf and they (EMTs, doctors, hospitals, nursing homes, whomever) have to follow your wishes.
Lawyers can draw the papers up for a fee, but you can also get them free from the state (in most states). They are fill-in-the-blank type forms. Sometimes they have to be notarized. Contact your Area Agency on Aging. There is an Area Agency on Aging for every county in the United States. Ask “What State Agency has the forms for Do Not Resuscitate (DNR), Medical Power of Attorney (POA) and Advance Directive (AD).” With that information you can then go to the state agency’s website and download them. Cumbersome, but FREE.
Let’s take them in the order of use.
DNR is short for Out of Hospital Do Not Resuscitate. This is for the 911 guys (EMTs). Their job is to try to bring people back to life. They will do their job unless told not to. It may be great for someone who has been without breath or heartbeat for five minutes, but what about twenty-five minutes? Without a DNR to waive in the EMTs face, off they go to the hospital trying to revive all the way. What if a well meaning neighbor called 911 and you weren’t home? You loved one is revived and on the way to the emergency room.
Your next opportunity to assert your control over the situation is at the hospital. To do that you must present the hospital with a valid Medical Power of Attorney (POA). Keep one in your car.
The hospitals have you sign one if you don’t have your own, but the one they give you may be contestable if your loved one is unconscious or too cognitively impaired. If you don’t have a POA signed prior to the admission/treatment and give a copy of it to the hospital as soon as possible you stand the risk of the hospital doing what is medically necessary even if it is against your loved one’s wishes. If that happens there is generally only one thing you can do and that is going to court to get guardianship. That takes time and money. It is far better is to present a executed POA before the need arises.
Finally, the AD, or more properly the Advance Directive to Physicians sometimes called a Living Will. This is where you can and should get specific. Like, no feeding tubes, no artificial respiration and whatever else you care to list. I suggest that you include a statement, something like, “If not listed here, I want to be consulted before any action is taken or service given”. If you want no extraordinary measure of any kind, use the words “palliative care” or “Hospice”.
I understand how serious these decisions are. I’m not advocating for any specific choices, just that the choices need to be considered and decisions made. I know that it is a horrible burden to have to make these sorts of decisions, but the bottom line is– do you want a stranger doing it for you? I don’t.
*Carole Larkin MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementias care. She also is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. Carole can consults with families via telephone nationwide on problems related to dementia. Her company, ThirdAge Services LLC, is located in Dallas, TX.