An advance directive is important, no matter your age. If you can’t speak for yourself due to an illness or accident, it specifies the medical care you want.
Nobody wants to think about the possibility they could suffer a terrible accident or illness one day, resulting in the inability to communicate. Especially if you are young and healthy, your senior years and old age linked debilitating illnesses could be the farthest thing from your mind.
No matter your age or health circumstances, however, it makes sense to face the fact we are all mortal — and even the youngest and healthiest people can, unfortunately, suffer brain injuries and unexpected diseases affecting consciousness and thinking abilities.
An advance directive is a legal agreement that lets you decide about your health decisions and who you want to carry out your wishes, including end-of-life decisions, in case you can’t communicate your preferences one day. While, hopefully, it will never be needed, your advance directive ensures you’ll receive the medical care you would want — and none you don’t want — if you are unable to speak for yourself and doctors, family members, or a close friend must make decisions for you.
What is an advance directive?
There are two primary parts to an advance directive, the National Institute on Aging (NIA) explains:
- A living will. In this written legal document, you can list procedures you would want, and any you do not want, under specific conditions. For example, if there is no chance for survival, do you want life support to be discontinued? Or, if you are in a coma, do you want all medical treatment possible to support your body indefinitely or for a specific length of time?
- A durable power of attorney for healthcare. This legal document can be used instead of a living will, or in addition to it, and it becomes part of your advance care directive. A durable power of attorney for healthcare names a proxy. This is a family member, close friend, or doctor whom you designate to make medical decisions for you at any time you are unable to do so. Your proxy (also sometimes called an agent, surrogate, or representative) should be familiar with your specific values and concerns about your healthcare so they can make the decisions you would want in case you are unable to make them yourself at some time.
When looking into an advance directive that’s best for you, it’s important to understand you do not have to list your specific health decisions in writing. Instead, if you feel comfortable that your proxy understands your values related to medical care and end of life issues, you can opt to give your proxy the authority to evaluate and make decisions themselves about any health situation or treatment that comes up, if you are incapacitated.
It's obviously important to talk about your thoughts, beliefs, and values with the person you designate as your healthcare proxy. It also makes sense, however, to talk to multiple people in your life you are close to you about how you want to be cared for in a medical emergency or at the end of life. These conversations can help you think through everything you want to put in your advance directive, the NIA notes.
Medical treatments and issues to consider in your advance directive
As you think about what an advance directive is going to specifically mention to align with your values and concerns about medical decisions, it’s a good idea to consider your personal feelings about common artificial or mechanical ways (below) that can keep you alive after a severe injury or a medical crisis (such as cardiac arrest or a severe stroke).
Cardiopulmonary resuscitation (CPR) can restore your heartbeat if it has stopped or is beating out of control due to a life-threatening arrhythmia (ventricular fibrillation, which is always deadly if not halted abruptly). A person does CPR by pushing forcefully on your chest while blowing air into your lungs. CPR can save lives but has risks, such as broken ribs or collapsed lungs. A defibrillator, a device that uses electric shocks to restore a heart rhythm may also be used. CPR and defibrillation can often trigger a stopped or fibrillating heart to resume normal beating. In very elderly adults, however, especially those with multiple health problems, CPR may not be effective.
A ventilator is a machine that connects a tube down through your throat and into the windpipe (the trachea) to force air into your lungs. This procedure, called intubation, is uncomfortable and even painful, so drugs are typically used to keep patients on ventilators sedated. If long-term treatment with a ventilator is expected, a hole may be cut through your neck to attach the tube directly to your trachea. This procedure, called a tracheotomy, doesn’t require sedation while on a ventilator. However, the use of the breathing tube means you can’t speak without special help because air doesn’t reach your vocal cords. Amyotrophic Lateral Sclerosis ("Lou Gehrig's disease) is an example of a terminal condition that often involves intubation and a tracheotomy as the disease progresses.
Artificial nutrition (tube feeding) and artificial hydration with IVs (intravenous fluids) are used if a person cannot eat otherwise, due to an injury, stroke, or a terminal illness. Feeding may take place through a tube threaded from your nose down into your stomach or, if artificial nutrition is needed long-term, through a tube surgically inserted into your stomach. Fluids are delivered through tubes inserted into a vein if a person cannot drink. As people with dementia, especially Alzheimer's disease, have worsening symptoms, they may not be able to eat without artificial nutrition and IVs.
However, the NIA reports research shows artificial nutrition and hydration toward the end of life does not meaningfully prolong survival can be harmful if a person who is terminally ill cannot digest and process food and nutrients properly.
In addition to considering how you feel about these specific treatments being used if you are unable to agree to them, it’s also key to consider whether you would want comfort care if you are in a terminal condition.
Comfort care is anything which can be done to relieve pain and discomfort, while staying in line with your other care decisions wishes. It includes drugs for pain, anxiety, constipation and nausea; managing shortness of breath; limiting invasive medical testing and providing emotional and/or spiritual counseling.
While you may already have an organ donor card or be listed as an organ donor on your driver’s license, you can also choose to note in your advance directive if you want to be an organ donor, or not, at your death.
What to do after you have an advance directive
Make sure you give copies of your advance directive to your health care proxy and to an alternate proxy. An alternative proxy is someone you choose to take over if you have an emergency health situation and your original proxy is not available or incapacitated. Your doctor should also receive a copy of our advance directive, which will be kept with your medical records.
Keep a record of everyone who has a copy of your advance directive so, if you make changes in the future, you’ll have a list of people who need an updated copy.
In addition, make sure your partner or spouse, other family members and close friends know where you keep our own copy of the advance directive at your home. If you have to go to the hospital, you or a friend or relative should take a copy of the document and give to the ER or other medical staff.
You can also carry an advance directive notification card in your wallet. It indicates you have an advance directive and tells where you keep it. You can download and print a free advance directive wallet card from the American Hospital Association online.
Bottom line? An advance directive is worth the effort
An attorney can help you prepare an advance directive but is not required. What’s more, the NIA emphasizes you should talk to your doctor as you start the planning process, and not depend on an attorney to help you understand and decide on different medical treatments you may list in the directive.
While laws differ somewhat from state to state, in general a person’s expressed wishes listed in their advance directive are typically honored, according to the American Hospital Association notes.
Some states have their own advance directive forms. Your local Area Agency on Aging , a service of the US Administration on Aging, can help you find out where to obtain the forms. For information, call 1-800-677-1116. Depending on the state you live in, your advance directive may need to be witnessed and some states require your signature to be notarized.
Remember, an advance directive only goes into effect if you are ever incapacitated and unable to communicate for yourself due to a severe illness or injury. You will hopefully never need it, but it is having it in place can give you and your family members peace of mind if potentially life and death health decisions must be made, and you are unable to speak for yourself.
What’s more, an advance directive is not written in stone.
In fact, the National Institute on Aging (NIA) advises thinking about an advance directive as a living document. It can be changed if your health situation changes, or if there is new information about medical treatments that influences your decision about what care you would want to receive or withheld if you could not decide for yourself. You can also change your proxy.
It’s a good idea to review your advance directive decisions at least every decade to see if you want to revise any preferences. What’s more, if you have gotten married or divorced, if your spouse has died, if something happens to your proxy or alternate, or if you’ve changed doctors, you’ll need to update your advance directive. Let your doctor, proxy, close friends, and family members know about the changes, and make sure they receive updated copies of your advance directive.
August 09, 2021
Janet O’Dell, RN