- Have you or someone close to you been admitted to the hospital and been asked if you have an advance medical directive or a living will?
- Do you know what will happen to you if you don’t have advance health care planning and you are unable to make health care decisions?
- Do you want to be on life support indefinitely because no one wants to “pull the plug?”
Advance Health Care Directives
The question you will get asked most frequently in the hospital is if you have advance directives. The answer I usually get is “no” and I’m going to tell you why you are putting your life, or the quality of your life, in danger if you don’t have advance directives. I will explain the different types of advance directives for living and end of life directives. I promise, you will need them one day! I also want to paint the picture of what “life support” looks like and that “pulling the plug” is not actually a thing.
The Book of Life (or death) – Dying with Dignity
Think of an advance directive as the last chapter in a book. The final chapter or ending of a book can make or break your thoughts and feelings about the whole book. An advance directive allows you to be the author of you last chapter. That may be the difference between a “good death” and a “bad death.” Advance directives can make or break a lifetime of memories.
What are Advance Directives?
Advance Directives are a legally binding document or documents that explain what you want or don’t want for your health care at any point in your life, as well as your end-of-life decisions. Advance directives only come into play if you are unable to make or speak those end-of-life wishes at the time you need them. It’s really a road map for your loved ones that guides them through your health care decisions without guilt (more about that later).
My Story
I knew it would fall upon me to call the shots at my parent’s end of life, so I discussed advance directives with them when they were in their 70’s and of sound mind and body. To be honest, this was late in the game in my opinion but at least it happened. I made an appointment with an Elder Care Attorney, I went with them to draw up the documents and when the time came many years later, I followed their wishes. And guess what? When the time came neither of my parents were capable of making their own health care decisions. My mom died from complications of Alzheimer’s Dementia and my dad died from complications of a stroke. But my mind was at ease, and I did not suffer any guilt when it was time to say goodbye because I knew how they wanted to live out their life and when they would not want to live any longer.
Types of Advance Directive Documents
Legal advance directives can differ depending on the state you live in but generally advance directive examples include a living will, health care power of attorney, a DNR/DNI (Do Not Resuscitate/Do Not Intubate) or an AND – Allow Nature Death.
When You Can’t Make Your Own Health Care Decisions
Now you are probably thinking, no biggy, I’ll just tell someone what my health care wishes are – your spouse, the doctor or nurse, a friend – before I go into the hospital or before I go into surgery and everything will be fine. But no, it doesn’t work that way. For starters, not all hospital admissions are planned, and you never know when severe illness or injury will occur. You might be surprised to learn that there are many situations in which you are not deemed capable of making your own decisions in the health care world. Did you receive pain medication? Did you take an Ambien or other sleep aid before bed? Did you hit your head and suffer a concussion? Did you just come out of surgery that required sedation or anesthesia? Then you are not legally capable of making decisions about your health care. And that means someone else is going to make those decisions for you. This is where advance directives and honest conversations with your POA come into play.
When You Don’t Have an Advance Directive
I’ll share a little story with you. A man in his 50’s came into the ER with a fever, difficulty breathe, and was extremely weak – he was positive for Covid-19. In the ER he was intubated – a breathing tube down his throat, sedated and admitted to ICU. The patient can’t speak when intubated (a ventilator to breath for him), you physically cannot speak even if not sedated, because the vocal cords are bypassed. ICU nurses managed and monitored around the clock IV medications for his heart rate, blood pressure, sedation, ventilator settings and anti-seizure medication. Just to name a few of the things required to manage life support of a COVID-19 patient in this situation. After many weeks of this medical management the outlook for this man’s meaningful recovery was not good.
A Patient Who Can’t Make His Own Health Care Decisions
Needless to say, this man could not make his own health care decisions and did not have a health directive. This patient was not married but had a minor child, as well as a significant other. (I’ll explain in a minute the legal order in which a person can and will be designated as a healthcare surrogate if you don’t have directives). His parents were deceased and his only sibling lived out of state and had not spoken in years. But guess who the end-of-life decision ultimately fell to? The out of state estranged sibling. Is this the person who YOU would want to make decisions about your health care, your quality of life and how and when you die? If only this patient had advance directives, his wishes could have been known and honored!
Health Care Decisions and Your Family Tree
Ok, so without advance directives the default surrogate or health care proxy list is much like a family tree. Check with your state laws regarding default health care surrogates. If you are legally married, your spouse will be making your health care decisions. I hope you have a good marriage, just kidding! If you are not legally married, and do not have advance directives, your adult children (usually the oldest) or living parent(s) will be asked to decide your life and death wishes.
Significant Other or Partner as a Health Care Power of Attorney (POA)
But, you say, I have been in a relationship for 10-20 years with my significant other and he/she knows my end of life wishes – well, that’s great that you had the conversation, but he/she won’t be the one making the decisions because a significant other is not a legal default surrogate in the eyes of the law and healthcare administration without a legal document. The significant other must be named as such on a healthcare power of attorney form.
Siblings and Other Relatives as Health Care Surrogates
So, if there is no spouse, parents or adult children in the picture, the decision maker will be a sibling, then possibly close relatives like adult grandchildren, aunts, uncles or cousins and then good friends who claim to know you well enough to know your healthcare and end of life directives who are willing to step forward to make those decisions. If a default health care surrogate cannot be determined, your care and end of life decisions will be made by a hospital ethics committee and state attorneys.
Here is the Problem with a Default Surrogate
Why would you put someone close to you in the very difficult position of having to make life and death decisions about you when a piece of paper with YOUR wishes and instructions on how you want to live or die could provide them with guidance in their time of grief? If you have living parents, don’t you want to know what they want if they become seriously ill? If you have children, don’t you want them to know what you want if you become serious ill or injured?
The Difference Between a Will and a Living Will
Ok, real quick, these are easily confused but know the difference – a will dictates how you want your assets handled and dispersed – bank, retirement and stock accounts, real estate, personal possessions – and by whom. A living will is for health care purposes and will instruct family and medical professionals what life sustaining measures you would want to keep you alive, and to what extent. Or it will simply state what health care interventions you don’t want to keep your body alive. A will is financial, a living will is health care.
The Difference Between a Power of Attorney and a Health Care Power of Attorney
Your Will dictations a primary person to be your designated power or attorney (POA). This person will carry out the instructions in your Will (financial). A Living Will dictations a primary person know as the healthcare surrogate or healthcare power of attorney – the person who will make your life and death decisions if you are unable to make them yourself. Many times a POA and a healthcare POA are the same person but they don’t have to be.
Do Not Resuscitate (DNR) & Life Support Decisions
Do you know if your loved one wants to remain on life support indefinitely or would want you to “pull the plug?” I’ve seen it too many times, the spouse or the children are called upon to make their husband, wife, mother or father a DNR and the surviving loved one can’t make that decision out of guilt or think they are doing the wrong thing. Why? Because you didn’t talk to them about it! And when they finally do decide they must struggle with the guilt of that decision. This could have been avoided if you had a simple conversation, well maybe not simple, but a conversation about how you want to live or die. Listen, we are all going to die, so don’t make it harder than it already is.
Life Support Definition
Let’s talk briefly about life support and “pulling the plug.” Life support can mean many different things while at the same time meaning the same thing. The difference is in the details. The details or the condition of the patient receiving life sustaining mechanical and medical support. For example, you go in for a big surgery like open heart surgery and when you come out of surgery you are on a ventilator – a machine breathing for you, you are received lots of medication intravenously to stabilize your blood pressure and heart rate. You are receiving blood transfusions to replace blood lost in surgery, you are receiving insulin intravenously to maintain glucose levels for proper healing, you have chest tubes coming out of your body to drain excess fluid, you are receiving IV pain, anti-anxiety and sedation medication – this is definitely life support. You would not survive after surgery without all of the mechanical and medical support. However, this is temporary and expected post-operatively. This person will most likely be off many of these medications, off the ventilator and sitting up in a hospital recliner the next day. And soon taking his or her first walk with the nurse or physical therapist short after that.
Life Support Decisions and Pulling the Plug
At the opposite extreme, you have a patient on a ventilator for weeks. Weaning them off the ventilator is unsuccessful, they can’t maintain their own blood pressure, heart rate, breathing, etc. without mechanical or medical support and their organs are now failing as a result. The dying process usually starts with kidneys and other organs failing. This patient has a small window in which they will either improve or will continue to decline. This patient cannot come off mechanical or medical life sustaining support or they will die immediately. This is one example of when advance directives are needed or when the medical team, doctors, nurses, case managers start discussing end of life issues with you, the designated or default healthcare surrogate. When the decision has been made to allow someone to die no one “pulls the plug” as depicted in many cartoons. The patient is made comfortable with medications and then all other life supporting mechanical or medical devices and medications are stopped. There is no plug to pull. Every effort is made by the nurse to ensure the patient passes on peacefully and with dignity.
So, What Do You Need to Do Now?
National Health Care Decisions Day is in April so what perfect time to start the conversation with whomever will listen about how you want to live and die! Yeah, it’s uncomfortable, but so are the too tight Jordache jeans you wore in the 80’s! Listen, I can’t image someone I love having to make a life and death decision about my healthcare and have to live with the guilt that they may have made the wrong decision. Spell it out with advance care planning!
Advanced Directives – Where do I start?
Ask friends and family if they have advance directives and who helped prepared the documents. This is a great ice breaker at family gatherings! But seriously, this is an excellent way to really get to know your family’s wishes. Go online. There are free advance directive sites that provide generic documents, these are fine in a pinch but don’t really get down and dirty. I highly suggest hiring an attorney that specializes in estates, trusts and elder care. Depending on your needs it can be surprisingly affordable, and the documents can be more specific and personalized. If you or a loved one are already hospitalized ask to speak to someone in case management. They can provide you with basic advance directive forms.
Picking the Best Healthcare Surrogate or Healthcare Power of Attorney
I can’t emphasize enough that conversation with your family is key. Find that family member or friend that will follow your health care wishes. You might be surprised to find out the family member you are the closest with won’t be up to the challenge of making such decisions. I had a patient in her 40’s dying of cancer whose mother was her healthcare POA. When it came down to making health care decisions the mother couldn’t make any, it was too stressful. The hospital had to have an ethics committee meeting and ultimately the patient and mother agreed to choose her sister as the patients’ healthcare POA and new documents had to be written. This unfortunately delayed her treatment and transfer to another level of care. I had another patient recently that did not want his as POA because it would be too upsetting to her so. Their son was agreeable to becoming his dad’s POA but still discussed everything with mom.
Guides For Advance Directives and End of Life Care
Sites called “The Conversation Project” The Conversation Project – Have You Had The Conversation? and “The Five Wishes” Five Wishes | Make Your Wishes Known are perfect starters for the final chapter of life discussion. The Five Wishes program was designed by an attorney that worked alongside Mother Teresa for a year observing her work and is a valid and legal advance directive is 36 states. Even if it’s not valid in your state it is an excellent way to guide you down the end-of-life discussion path. The Conversation Project was created when Pulitzer Prize-winning writer Ellen Goodman and a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “hard deaths” within their own circle of loved ones.
I hope this helps you write the final chapter in your book of life. If you have any questions or comments please leave them below. I’d love to hear your stories about experiences you’ve had with death – good or bad.
