Advanced health care directives

I want to talk to you about advanced health care directives. 

Wait, don't go.  Hear me out.  You may think you are too young (or young at heart) to have to think about these topics, but if you are unlikely to get a warning in advance that you or a loved one are about to have a serious health crisis. And if such a crisis emerges, you will need an advanced health care directive which appoints someone to make decisions on your behalf if you are unable to do so, and which advises that person on your wishes.

 If you are over the age of 21, you need to have a nuanced, fully fleshed out advanced health care directive. If you are over the age of 40, you will need to adjust it further to include instructions in case you eventually have a cognitive impairment such as dementia.

Most of us don't want to even think about the possibility of needing someone to make our health care decisions in the case that we become incapacitated. You may assume that your loved ones know what you want, and that it's unlikely and depressing to discuss, especially if you are young and/or healthy right now.  But let me paint you some pictures of what can happen if you don't have clear written instructions.

Here's one scenario: your beloved father has slowly slipped into Alzheimer's Disease.  He has always told you that he didn't want to be a burden to you.  Now, he cannot clean or feed himself, and you and your sibling are spending several hours a day helping him.  You think that he would want to be in a facility so that his children wouldn't experience him as an emotional and physical burden, but your sibling thinks he meant that you should keep him at home to avoid the financial burden. Because you have no way to find out who is right, you and your sibling are fighting more and you are both stressed by the feeling that you're not doing right by your beloved father.

Here's another scenario: you are in a car accident and have a head injury.  Your family doesn't know what to do.  There is no one explicitly designated as your health care agent, so the hospital asks your family to make decisions on your behalf.  This may include a parent you no longer have a relationship with, a sibling you do not trust, or an estranged (but not officially divorced) spouse. 

And even if you have designated your agent(s), do they know your wishes? Do you? Would your wishes be different if you are thirty or eighty? If you have young children and/or are married and/or are living alone? If you have had a lengthy illness? If your condition is curable? If your prognosis is good or poor? If the treatment was extremely costly? If you would likely have a high risk of being paralyzed or in pain or needing help with your daily activities?

We tend not to have these conversations or even let ourselves consider our wishes in such scary and undesired scenarios.

As someone who helps people through the aftermath of not having their wishes in writing, let me assure you that it is far easier to have a conversation now, rather than to have heartache later. 

Having to guess what your loved one would have wanted while you're going through the stress and emotional upheaval of a crisis is something no one ever wants to do.

And you definitely don't want your loved one to guess wrong about what you would have wanted, or put them through the stress of fighting with other family members about your wishes.

Of course this isn't fun, and many people just don't know where to start.  Happily, this is the easy part. There are forms available on the internet, and they're straightforward and have very clear instructions.  

1. The AARP has free Advanced Health Care directives on their website.

Print out a copy for your location and start filling it out. These forms are fairly basic, simply asking whom you would choose as your health care advocate if you are unable to do so, whether you would want life prolonged or not in end of life circumstances, and whether you'd want your organs donated or not.  You can always add more detail later, but please start with this.

2. Get your document notarized.  Don't skip this step.  Notarization will help your health care agent to feel confident that they are accurately representing your wishes, and will also help them to stand their ground if there are members of your family or inner circle who disagree with their choices on your behalf. 

3. While you've still got momentum, go to this website and print out the dementia directive. Basically, it defines mild, moderate and severe stages of dementia, and it asks you to check which of the four levels of intervention you would want, ranging from palliative care only to any intervention that might extend life. 

Of course, with all these decisions, I strongly encourage you to consult with your legal and medical providers, as well as with your loved ones, to confirm that the choices are right for you and your unique circumstances.  In addition, these topics may bring up emotions or thoughts that might be appropriate to explore with a licensed mental health provider. These are important issues, and they deserve your full attention and appropriate consultation.

I have seen too many people in my office, tormented by the family conflicts, or by the uncertainty of what their loved one would have wanted. Please, whether as a gift to your future self, or to the people who care most about you, take the time, and fill out these forms.