When you draft up your advance directive, your goal is to create a document that literally speaks for you about what you do and don’t want in the event you one day cannot speak on your own behalf.
Setting Your End-of-Life Care Goals
The essential responsibility of your advance directive is to outline what types of care you do want and what types of care you don’t want if you are incapacitated and your diagnosis is expected terminal. Here are some options you can choose or deny:
- Use of antibiotics for infections.
- Best treatments for pain and symptom management as end-of-life nears.
- Options for mechanical ventilation (if desired).
- Options for addressing complications (including treating and not treating).
If your overarching goal is to spend your final days in your home surrounded by your family, you can ask your physician to sign off on a DNLH order – this stands for Do Not Leave Home.
Understanding When an Advance Directive Becomes Active
Your advance directive will not apply until the following conditions are met:
- You are medically incapacitated and unable to speak for yourself.
- Your treating physician assesses your medical condition and determines the prognosis is terminal.
Defining the Care You Want
There are two parts to an advance directive – stating the treatments you do not want, and stating the treatments you do want.End-of-life or terminal care is often called palliative or “comfort” care – the goal with this type of care is easing pain in body, mind and spirit.
Here are some of the many types of comfort care you can select from when writing your advance directive:
- Pain treatment and cessation.
- Nausea treatment and cessation.
- Prevention of and treatment for bedsores.
- Spiritual guidance and care for yourself and your loved ones.
- Mental health (psychological) care for yourself and your loved ones.
- Any type of care that will promote comfort and reduce suffering.
- Skin and body care (can include massage, lotions, moistening of eyes and mouth, gentle physical movement and therapy to ease stiffness).
- Ensuring loved ones can visit you without restriction.
- Ensuring your favorite music is playing.
- Ensuring your passing wishes for organ/body donation and autopsy are carried out
Physician Initiated Orders
There is also a class of orders you can include in your advance directive but that your physician must also sign off on. These are called “physician initiated orders) and your doctor will use a specific medical form developed for use with advance directives.
Here, if you first initiate a discussion about your advance directive with your doctor early in your disease progression, you may want to revisit your wishes as your disease worsens. For many patients, preferences will shift as symptoms get more severe, so you want to be sure your advance directive gets updated to reflect your most current wishes.
Here are some examples of the orders that your physician must sign:
- Order: Allow Visitors Extended Hours (AVEH).
- Order: Full Comfort Care Only (FCCO).
- Order: Do Not Intubate (DNI).
- Order: Do Not Defibrillate (DND).
- Order: Do Not Leave Home (DNLH).
- Order: Do Not Resuscitate (DNR) or Allow Natural Death (AND).
- Order: Do Not Transfer (DNTransfer).
- Order: Inquire About Comfort (IAC).
- Order: No Intravenous Lines (NIL).
- Order: No Blood Draws (NBD).
- Order: No Feeding Tube (NFT).
- Order: No Vital Signs (NVS).
Write it All Down
It cannot be emphasized enough how important it is that you write everything down in your advance directive. You want your advance directive to be “you” when you can no longer verbalize your wishes.
There are certain therapies that you may wish to have right up until your final day and other therapies you don’t ever want to have. While it can take some time to go through the whole list of options now, it will be worth it later when you need your advance directive to speak for you.
Here is a list of common therapeutic options you will want to consider:
- Antibiotics. This is a class of drugs typically used to treat infections.
- Artificial nutrition or feeding tube/Total parenteral nutrition (TPN) or hyperalimentation. If you cannot eat and drink for yourself, nutrients and fluids can be provided intravenously, through a catheter or via a tube to the stomach or intestine.
- Resuscitation drugs. Here, you permit use of drugs to restart your heart, but not CPR.
- CPAP or ventilator machine. Oxygen is delivered through a CPAP or other machine connected to a mask to help you breathe or breathe for you.
- CPR. This is traditional mouth-to-mouth resuscitation.
- Defibrillator or pacemaker. Use of a machine to artificially start your heart or regulate your heartbeat via electric shock.
- Dialysis. Purifies your blood when your kidneys can no longer do it.
- DNR. Refuses all types of resuscitation.
- Transfusions. These can be blood or other fluids.