Five years ago, I lost my best friend, Royana Black. She was just 47 years old — brilliant, funny, passionate, and the brightest light in any room – every single time. Her sudden passing devastated everyone who knew her, and still does. But in the midst of that heartbreak, she also left behind one final, unexpected gift — a lesson I now share with anyone who will listen: don’t wait to talk about what matters most.
[Read more…] about What I Learned From Royana: Why an Advance Health Care Directive MattersAdvance Health Care Directive
National Healthcare Decisions Day: Why Having a Healthcare Directive is Crucial
April 16th is National Healthcare Decisions Day (NHDD), and is a reminder of the importance of healthcare planning and the need for an advance healthcare directive. Planning ahead and communicating our healthcare preferences allows us to take control of our healthcare needs and ensure that our wishes are honored, even in end-of-life care.
What is an Advance Healthcare Directive?
An Advance Healthcare Directive (“AHCD”) is a legal document that specifies your healthcare wishes. It allows you to choose an agent to make decisions on your behalf if you become incapacitated. An AHCD also allows you to make end-of-life choices and specify whether or not you want to donate your organs.
Why is it Important to Have a Healthcare Directive?
If you become incapacitated and don’t have an AHCD, no one can make healthcare decisions for you. This can cause confusion, stress, and conflict among family members and could result in expensive court battles. By having a healthcare directive, you can ensure that your wishes are respected and that your loved ones can make decisions on your behalf.
Only One in Three Americans Have an Advance HealthCare Directive
Why do we need a National Healthcare Decisions Day? Because less than one-third of all Americans over the age of 18 have completed this vital document.
People avoid talking about death and incapacity like the plague. Jerry Seinfeld had a joke about people being more afraid of public speaking than death: They’d rather be the person in the coffin than the one giving the eulogy. The same is true for planning. Most people avoid having a few ‘challenging’ conversations about natural parts of our life cycles despite knowing it will create an expensive, chaotic mess for their loved ones. Rationally it is absurd, but we are rarely rational about such emotionally charged topics. That is, until we must face them.
Not Even Hospitals Are Encouraging People to Complete Directives
I was recently contacted by a couple because one was diagnosed with cancer. They had talked for years about getting a plan in place (“ever since our 14-year-old was born”), but it took this shock to get them to finally act.
In our initial conversation, I learned they did not have AHCDs. (It’s worth noting that I don’t tell everyone I meet that they should have an estate plan, but I do tell just about anyone who will listen that he or she needs to have an AHCD – even the woman who helped me at the DMV!)
Time was of the essence for this couple, so I offered a link to our website where they could download and complete their directive immediately. We offer a few different versions including the state’s statutory version and a few from local hospitals. I asked if he was being treated at a local hospital because we may offer their version, and indeed he was a patient at one of the country’s premier medical centers. That is, a leading medical center that failed to mention completing an AHCD.
Why Are Health Care Directives So Rare?
This particular medical group even offers their own branded version, and still, no one they met with –from reception and scheduling through nurses and physicians — thought to bring it up? If it doesn’t come up in a situation like this, when will it come up?
We don’t like to talk about or even think about our own mortality – it’s almost forbidden in our society. So, it stands to reason that the document available to help us plan for end-of-life situations will also be taboo.
But are there more personal, intimate decisions you will ever make than your end-of-life decisions? Isn’t this the one time in your life you absolutely want to be heard and have your wishes respected? Medical science has extended life capabilities far beyond what our own bodies can provide, but is that living? That’s up to you. Quality of life is in the eye of the beholder. Can you think of anything that would give you more peace of mind outside of knowing you will be dying with dignity?
Empowering Our Loved Ones
Planning for our future healthcare needs not only gives us peace of mind but also empowers our loved ones to make informed decisions on our behalf. By communicating our wishes and designating someone to make medical decisions on our behalf, we give our loved ones the tools to advocate for us and ensure that our wishes are respected. And, if we’ve talked to our loved ones and caregivers, we also make sure that everyone is on the same page — our page. These are emotional times for families, and if they are together on a united front, these dark days can bring them closer together rather than into life-long family feuds.
The Conversation Project
One of the ways to approach these difficult conversations is through The Conversation Project, an initiative that provides resources and tools to help people have important discussions about their healthcare wishes. As proud Champions of The Conversation Project, we share their Conversation Starter Guide with all our clients. It is a tool that can help you communicate your wishes to loved ones, caregivers, and healthcare providers.
Making Informed Decisions
National Healthcare Decisions Day is a reminder that we all have the right to make informed decisions about our healthcare. By planning ahead and communicating our wishes, we take control of our healthcare needs and ensure that our wishes are heard. It’s never too early or too late to start planning for the future, and National Healthcare Decisions Day is the perfect time to take that first step.
Why Everyone 18 And Over Should Have An Advance Health Care Directive
In California, an Advance Health Care Directive (AHCD) protects your health care rights. You make your health care, end of life, organ donation, and even memorial/burial/cremation/spiritual decisions now so if something happens to you, your wishes will be followed by the person (agent) you choose.
DIY: You Can Do It Yourself, Right Now!
You have the right to speak for yourself and make decisions about your own health care. But if something happens to you and you cannot speak for yourself, no one has the right to speak for you (or to your doctors or medical team!). That’s why it is so important for everyone over the age of 18 to have a completed AHCD.
While estate planning attorneys like me can advise you and help you with your AHCD, you can complete one right now as long as you are not incapacitated.
To make it legally binding, you would then either (1) have it notarized; or (2) have it witnessed by two people. The two witnesses cannot be your agent and they cannot be part of your health care team. Also, one of the witnesses must not be related to you and cannot inherit anything from your estate.
Choose Your Agent
Your first decision in completing your AHCD is to choose your Agent, or the person who will make your health care decisions for you.
This is an important decision that should not be taken lightly. You must choose someone who will follow your wishes, but also be able to make judgement calls based on your values. They may face opposition from your medical team and peer pressure from other loved ones, so you need someone who will fight for you. They will also be dealing with a myriad of emotions, so make sure your person can make difficult decisions under the most trying of circumstance.
We always suggest that you name one person and two alternates in case there is an emergency and the first person you named is not reachable.
Make Your Decisions For Health Care
Next, you’ll make decisions about end-of-life health care. If doctors say your condition is irreversible, incurable, and you are unlikely to regain consciousness, you can choose to not prolong life (also known as the ‘pull the plug’ choice) or prolong life as long as possible.
You can decide if you want treatment to alleviate pain and discomfort, even if it will hasten your death, as well as write out your own specific instructions.
Donate Organs, Tissues, And Parts – Or Don’t!
This is a personal choice with no right or wrong answer. But it is important that you make your wishes known and do your research on what will happen if you make certain types of donations.
For example, if you donate your body to education, your family will likely receive only your ashes after a specific period of time. These arrangements must be made with the specific institutions as they each have their own criteria and policies, so please contact them directly.
Designate Your Primary Physician
If you have a trusted primary care physician, you can designate that doctor to act in that role for you.
Have The Difficult Conversations…Now!
It’s not easy to think about our own mortality and even more challenging to talk about incapacity and death with our loved ones, but having these conversations is the most important part of advance care planning.
Your agent will never be able to truly step into your shoes and make difficult decisions for you if you don’t express your wishes and share what’s most important to you in regard to your acceptable quality of life. It’s just as important to have these conversations with the rest of your loved ones, so that if the time comes that someone must act as your agent, others don’t challenge your intended wishes.
Planning should not only safeguard your wishes but help bring those who love you closer together in such difficult times.
There’s No Time Like The Present
We don’t know what the future holds, so please don’t procrastinate. You can complete California’s Statutory Advance Health Care Directive right now. Its easy-to-follow instructions will help you get this done. We’ve provided the link below, as well as a link to our Advance Health Care Directive Toolkit. There you can find links to other free versions of the AHCD, as well as not-for-profits who offer help with them.
We’ve also provided a link to The Conversation Project’s Conversation Starter Guide. We’re proud to partner with this not-for-profit whose goal is to help people share their wishes for care through the end of life.
California’s Statutory Advance Health Care Directive
Thanksgiving Nightmare: An Advance Health Care Directive Story
The Rogers family Thanksgivings are epic. Mom and Dad’s adult children return to the nest with their own families for the festivities, which include a fiercely competitive flag football game, and conclude with a feast that will take them all weekend to recover. But this year will be remembered for all the wrong reasons.
The game was tied and there was only enough time for one more play. Mom and Dad watched their five kids, with their three spouses and two new significant others, and 13 grandkids lined up, ready for the snap. Their middle son, Aaron, takes the snap. As he steps back to survey the field, he trips over a rogue cornhole beanbag and falls to the ground. His opponents laugh while his team implores him to get back up. Dad throws his hands up in the air with an “I told you so,” reminding everyone he said they should clear the field before they played. Meanwhile, Aaron remains motionless.
Suddenly, everyone realizes Aaron isn’t moving. Some think he’s joking around, but not his wife, Carly. She runs to him and screams when she realizes she can’t wake him.
Aaron is rushed to the hospital. He’s in the emergency room with the family anxiously sitting, pacing, and praying in the waiting room.
A doctor emerges to tell the family Aaron hit his head and suffered a subdermal hematoma or bleeding on the brain. They have two choices — wait and see if the bleeding and swelling subsides, or drill a hole to release the pressure. The doctor needs an answer right now, but who makes the decision and how do they decide?
The surgeon turns to Carly. She’s a deer in headlights. Carly and Aaron are in their 40s, and like just about everyone else their age, they never talked about this kind of stuff, let alone planned for it.
Mom says she knows Aaron would want to give it time, but Dad says Rogers men are strong and the doctor should drill away. Brothers and sisters recall a lifetime of conversations with Aaron, trying to guess what their brother would want.
Everyone is scared. Some are crying, others yelling, a few crying and yelling. Carly kneels down to hug her two kids close to her, hoping to escape from this nightmare swirling around her.
Carly can’t escape. A tap on her shoulder from the doctor brings her back to reality. He then asks her, “Does your husband have an advance health care directive?”
What is an Advance Health Care Directive (AHCD)?
California provides a statutory AHCD in Probate Code Section 4701 where it states, “You have the right to give instructions about your own health care. You also have the right to name someone else to make health care decisions for you. This form lets you do either or both of these things. It also lets you express your wishes regarding donation of organs and the designation of your primary physician.”
It comes complete with instructions, can be filled out by any competent person over the age of 18, and just needs the signatures of two witnesses (who cannot be related to you) or a notary to be enforceable. You can find the statutory version and others on our website: https://bier-law.com/resources/advance-healthcare-directives/.
So, had Aaron taken a few minutes to fill out and execute an AHCD, would the Rogers’ family problems be solved? Not exactly.
You have the right to give instructions about your own health care.
As the statute says, you have the right to give instructions, and the AHCD provides some options for you to choose from. However, they are very basic and do not help you contemplate the myriad of circumstances one may find oneself in, especially considering all that modern medicine has to offer.
The most basic (and most important) decision you are asked to make on the AHCD is about your end-of-life decisions. Do you choose to prolong life or not prolong life — also known as the don’t-pull-the-plug or pull-the plug decision for those who typically use humor to deal with these difficult topics.
For Aaron’s family, no one knows what Aaron would choose because not only did he not have an AHCD, but he never talked about it with his loved ones. Had he and Carly, he and his parents and siblings, talked about what types of treatments he would or would not want, what sort of quality of life he would need to make life worth living with some discomfort and other challenges, and whether he would want to take risks for a potential recovery versus leaving things to fate, a deity, etc., at least then the family would have some direction and be able to move forward on a united front.
You also have the right to name someone else to make health care decisions for you.
An AHCD is a document that can speak for your when you can no longer speak for yourself, but its real power lies in its ability to allow you to choose someone to speak for you, to weigh the options, and make decisions as you would have had you been able to do so.
While it may seem simple to pick a person to be your Agent (that’s the technical term), a lot more should go into this decision. Most of my clients choose their spouse if they are married and a parent or sibling if not married. But just because someone is your best friend or knows you better than anyone else, they are not necessarily the best choice. Will they be able to stand up for your wishes and respect your decisions even if they don’t agree with them? What if others disagree, or perhaps even doctors think you’re being irrational?
Typically, Aaron would have chosen Carly. But Carly is far more practical than Aaron, and panics in emergencies. Mom leans towards giving control to a higher power while Dad thinks his son is invincible, and both think they know better than anyone else, including Aaron. Aaron’s sister, June, is a pediatrician, but she is constantly annoyed at family members who don’t take her medical advice. So, who should Aaron choose to make sure his wishes are respected? How about his brother, Fred, who is a compassionate listener (and cardigan-trendsetter) who always had his back, even if Aaron was in the wrong?
The Conversation
Perhaps the most important part of end-of-life and medical emergency planning is The Conversation. For most people, it’s hard to think about death and disability, let alone talk about it. But how can you make sure your wishes are known, respected, and carried out without telling people, the people closest to you, what you want and don’t want? You can’t!
You will never make a more intimate, personal decision than your end-of-life decision and that’s why you should share the process of learning, reflecting, and deciding with the people you love, respect, and care about. These conversations, while initially awkward, will bring families closer together than ever before, but how do you start them?
We work with the non-profit The Conversation Project to help you start the conversation – actually, we hope this will be the start of life-long conversations because we change, our health changes, and modern medicine changes. As proud Champions of The Conversation Project, we lead presentations that walk you through our Conversation Starter Guide (which you can download here https://bier-law.com/conversation-starter-guide/.) and help you and your family deal, once and for all, with this once taboo topic.
A Happier Ending
When the doctor emerged from the ER and approached the Rogers family, Carly was ready, standing strong with the rest of the family by her side. She had provided a copy of Aaron’s AHCD to the hospital staff and the doctor knew right away who Aaron’s agent was, his wife.
Aaron told his wife and family during their many in-in depth conversations about the reality of life, that he wanted to do everything he could to be there for his wife and kids. If modern medicine could intervene and provide him with a chance to survive and live a meaningful, impactful life, then go for it. As long as his mind works and he can express himself, he can be a positive force for his kids.
They sent the surgeon back in to save Aaron’s life. The Rogers family wrapped themselves in the warm embrace of each other’s loving arms in what looked like a giant huddle in the middle of the waiting room. There was no arguing and no confusion. The family was on the same page, a page written by Aaron, and no matter what happened next, they moved forward together with love and hope, knowing that their husband, son, brother and uncle was at peace because although he couldn’t speak for himself, he was still in total control of his medical decisions.
* This is a work of fiction. Names, characters, business, events, and incidents are the products of the author’s imagination. Any resemblance to actual persons, living or dead, or actual events is purely coincidental and is not related to the premature elimination from an office football pool due to the poor play of any particular individual.
