It is important to have advance directives in place, particularly while you are waiting for a transplant.  If you are not sure what they are or how to go about getting them, I’ll walk you through all of the details.

Let me first reiterate that I am not an attorney or a doctor.  If you have questions about the specifics of any of these things you should seek out the help of a professional.  These forms are not extremely complicated so you may not need an attorney to complete them, but if you have questions you should speak with your doctor and/or an attorney

What Are Advance Directives Anyway?

Simply put, they are a legal means to make your medical care preferences known in the event you are unable to make decisions for yourself.  Let’s say you are going through your pre-transplant journey with relatively few hiccups.  It might not seem like you need to have something like this in place.  The fact is though, we never really know when we might need someone else to make medical care decisions for us.  One day we may be cruising along feeling pretty good and then suddenly find ourselves in critical condition.

They also make everything clear for medical professionals.  We’ve all heard of legal battles between family members who disagree on what they think their loved one would choose to do in certain medical situations.  By having your advance directives in place, you eliminate any guessing and ensure you get what you want.

Types of Advance Directives

A Medical or Healthcare Power of Attorney

Depending on your state, this can be known by several names.  For instance, you may also hear them called a durable power of attorney for healthcare or health care proxy.  A power of attorney is a person (or people) you name to make medical decisions for you when you can’t.

Take some time to think this through.  There may be an unanticipated situation or one that is not specifically addressed in other legal documents you may have.  You will want a person you can trust to make a judgment call on your behalf.  This person should know you well and understand what your wishes and values are regarding your care.  They should also be comfortable advocating on your behalf if there are disagreements about your care.

You can appoint anyone you’d like except for members of your medical care team.  It is also a good idea to appoint more than one so others can step in if the person you choose is unable to make a decision.  I had a primary (my mom), a secondary (my dad), and a tertiary (my brother) listed as powers of attorney.

A Living Will

This document will outline more specifically the treatments you do and don’t want to be used to keep you alive.  This is something else that you’ll want to put some thought into.  Here are some things to consider:

• Is it important for me to be self-sufficient?
• Would I want treatment that would keep me alive indefinitely?  In any situation?
• Am I only interested in treatments that would extend my life if there is a cure?
• Will I accept antibiotics or antiviral medications?
• Would I want CPR (cardiopulmonary resuscitation)?
• Am I open to mechanical ventilation (ventilation that takes over your breathing if you can’t)?  If so, for how long?
• Would I want a feeding tube (fluids or nutrients introduced either via IV or a tube into the stomach)?  If so, when and for how long?
• Should I be placed on dialysis (a means of removing waste from the blood and maintaining fluid levels if your kidneys fail)?  Again, when and for how long?
• What about comfort care?  Would I want palliative care?  What about hospice?  If so, when would I want to transition from one to the other?
• Do I want to donate my organs if I die?  By putting this in your living will it eliminates any question as to your decision.  You can also state that you understand that temporary mechanical intervention may be needed in this case. 

Do Not Resuscitate and Do Not Intubate

These are orders you can have even without a power of attorney or living will.  Do not resuscitate (DNR) is exactly as it sounds.  If your heart stops, no resuscitation steps will be taken.  You will not receive any treatment to attempt to restart your heart.  This would include CPR and a defibrillator.

Do Not Intubate (DNI) is whether or not you would want to have a breathing tube inserted to assist your breathing.

I strongly encourage you to speak with your doctor about both of these so you fully understand them.  Like, very strongly.  These are not decisions to be taken lightly.  They are not interchangeable and you’ll need to be clear about all of the measures that could be taken while you are in surgery as well.

Creating Advance Directives

Advance directives must be in writing.  Every state has different forms and requirements for these documents.  Additionally, you may need to have the document witnessed and/or notarized.  If you need to find forms specific to your state, you can check on AARP or the American Bar Association.

Make sure that you keep the original forms in a safe but easily accessible place.  All of the people you have listed to make decisions for you should have a copy as well.  You should also make sure your primary care doctor, your transplant doctor, and transplant hospital have copies too.  In some cases, you may be able to scan and upload the documents into your medical record yourself.  

It’s also a good idea to keep a copy of your advance directives with your important documents or go-bag.

Make sure you speak with your family and friends who may be involved with any care decisions.  Everyone should be clear on what your wishes are and who you have appointed to make these decisions.  By doing this you may help to eliminate conflict or feelings of guilt for anyone who may have to make a difficult decision on your behalf.

Revision of Your Directives

You can revise your advance directives at any time.  Keep in mind the procedures for doing this vary by state and will require the completion and distribution of all new forms.

This is a tough topic to discuss with your loved ones (and to cope with yourself!).  Take your time and think through your decisions thoroughly.  Your doctor can help you differentiate all of the treatments you may need and what each one means specifically.

Waiting for a transplant is hard.  You are battling for your life and this may feel like one more thing to do that you really don’t have the energy for.  As you wait for your transplant, there are so many things you have no control over.  Like what you can and can’t eat.  Or, whether or not you can drink more than a little water.  You dealing with poking, prodding, appointments, procedures, and testing.  In the end, having your advance directives in place can give you peace of mind.  It’s one thing you can have total control over even if you are incapacitated.  And it feels pretty dang good knowing that the care you want will be the care you receive.