What is an Advance Care Directive?
People often think of an advance care directive in the context of a terminal illness, such as cancer. But, this legal document should be in place for unexpected emergencies, such as car accidents, as well. It is also known as a healthcare declaration, a directive to physicians, a medical directive, a health care directive, and a living will. The exact terminology often depends on where you live.
Planning Ahead: Yes, You Do Need One!
Advance care directives are a powerful tool. They take away guilt and resentment that survivors may have regarding how someone has died. You’re able to be very specific about your feelings regarding end-of-life care, removing any doubts that various family members may have. This is what most people associate with an advance care directive (A.K.A. Living Will).
You should create one as soon as possible, ideally, before you are ever faced with a life-threatening accident or illness. Once you are ill, the process of putting together your advance care directive can seem emotionally overwhelming. It’ll make you acutely aware of the fact that you will, in fact, die long before you want to. It’s real, rather than theoretical, as I would be if you weren’t facing death. It doesn’t matter whether you’ve just been diagnosed or you’ve been fighting your cancer for a long time and can feel death knocking on the door of your life.
In the beginning of Dan’s cancer journey, he had a very hard time approaching the advance care directive. So, I got a booklet and went through 2-3 questions each day with him. I asked him the questions and he answered. When I needed some things to be clarified I asked further questions so that there was no doubt in my mind as to what his wishes were. I wrote all of his answers down as he gave them.
This process took the logistical burden off of him and it made the process less overwhelming. We always stopped after 2 or 3 questions so it didn’t feel so awful. The other benefit to this was that he and I were communicating about his wishes. This is essential since I will need to ensure they were carried out as he wished. I was listed as his proxy, giving me the final say about his health care.
Power of Attorney*
Power of attorney gives someone you choose, the right to act on your behalf in financial or real estate issues. This sometimes scares people. Handing over that kind of legal power is a big deal. It’s actually not as concerning as it sounds. For one thing, you will choose someone who you really trust.
Secondly, there are different types of power of attorney. In real estate, we often have clients who are unable to be at closing. They give someone they trust, a limited, or “specific,” power of attorney. This allows the proxy to sign legal documents on their behalf in that instance only, or in all legal matters that are defined, for a limited period of time.
In most cases, power of attorney will end if it expires during the time the person granting it becomes incapacitated. So how does this help you in a medical emergency? You will want to make sure that you have a durable power of attorney in place. This is done by adding additional language to reflect your wishes.
Medical Power of Attorney*
Power of attorney documents ensure your financial and legal issues will be handled if you are unable to, but what about medical decisions that need to be made? This is where the medical power of attorney comes into play. This is also known as durable power of attorney for health care, health care proxy, or health care agent. Just as in a power of attorney, you’ll want to make sure the proxy you choose is someone you trust to carry out your medical decisions if you are unable to.
Make it Legal*
No matter what, you should get in touch with an attorney who can give you the specific legal information that fits your situation. Laws vary from state to state, so you always want to make sure you are following your local laws. National Cancer Legal Services Network offers referrals to free legal services programs so that people affected by cancer may focus on medical care and their quality of life.
Your Proxy and Other Loved Ones
“Because I love you, I need to know what you want. Because you love me, you need to let me know, so I can know what to do.” -Dr. Vic Sandler
When looking for a proxy (which you’ll need), a spouse is ideal. Whoever you choose, they will need to be someone whom you can count on to carry out your wishes. They may need to be strong in the midst of other loved ones who don’t understand the decisions you’ve made.
Often, a patient decides that there is a point at which they no longer wish to keep fighting. This may be at the point when they are no longer able to express their wishes and must count on a proxy to carry them out. This may mean not opting for ventilation machines or feeding tubes.
The thought of losing the patient can be unbearable to family and friends. They may get angry with the proxy for making decisions that the patient would have wanted. The best prevention for this is to make it very clear to everyone in your family and close circle of friends what your wishes are. Also, tell your loved ones and your proxy, that you’re so grateful to have a proxy you can count on to carry your wishes out. Hearing these things from your lips will go a long way toward giving all of your loved ones peace of mind.
It’s important that you talk to your children about this. Explain to them, in age-appropriate way, why you’re making the decisions you’re making. They need to know that you’d rather be with them, but that your time is becoming short. You want the time you have together to be good time.
Your Advance Care Directive is More than Medical
After you’ve written or filled out your Advance care directive you’ll need to have it notarized. You then give it to your clinic to keep on file in the event there is a question of how to proceed near the end of your life.
The advance care directive addresses your specific health care desires as you near the end of life, but it isn’t limited to medical decisions. As part of this process, you can also express what you’d like done in your last days and hours.
- Who’s going to be at your bedside?
- Do you want everyone you know, there? Do you want time reserved for your closest family members?
- Is there anyone you don’t want there?
- Would you like music played?
- Is there a special pet you’d like to hold?
- How would you like to be dressed?
- Do you wish to have a member of the clergy there? Anyone in particular?
The more, well thought out the process of death is, the better the death can be. The better your death is, the easier it is for your family to cope after you’re gone.
 Advance care directive paperwork (or booklets) are usually available from your doctor’s office. While not essential, a pre-designed booklet made specifically for planning your advance care directive can be extremely helpful in this process. It will ensure that you have covered all of the bases and guide you through the process.
*Note: Please see our Legal Disclaimer.
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I am an author, writer, and speaker and homeschooling mom of 3. Since my husband, Dan was diagnosed with stage IV lung cancer in 2012, I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness.
My goal is to help people face cancer with grace.
My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com