At ECU Health, we want to make your advance care planning as smooth as possible.
As you and your family begin the important conversation about advance care planning, there are many resources you can turn to for help. Below, you will find websites, articles and books that may be helpful as you make these important decisions. We also have put together frequently asked questions for easy reference.
“Being Mortal,” by Atul Gawande
“The Four Things That Matter Most” by Ira Byock
Frequently Asked Questions
Advance care planning is a process that helps you decide what care you would want or don’t want if you are faced with a health crisis and are unable to communicate for yourself.
The process is ideally completed while you are well, and not in a crisis as this allows you to thoughtfully consider your values and treatment preferences, so that these align. Communicating your preferences is a key piece to ensuring your choices are honored. This guide will walk you through the process of completing your advance care plan, step-by-step.
There a 5 main steps to completing your advance care plan:
1. Think about what matters most to you.
2. Talk about it with your health care provider(s), family and those closest to you.
3. Put it in writing – document your preferences in the simple form, and have this witnessed and notarized.
4. Share your advance directives with your family and those closest to you and health care providers.
5. Review your documents periodically, but at least annually.
An advance directive is a written document(s) that records your health care treatment preferences to direct your health care team if you are unable to speak for yourself. The document(s) may also appoint a health care power of attorney (aka “agent”) to make health care decisions on your behalf.
An advance directive may include any of the following:
1. Health Care Power of Attorney
2. Living Will
3. Advance Instructions for Mental Health Treatment
4. Do Not Resuscitate Order (DNR)
5. Medical Orders for Scope of Treatment (MOST) form
Advance care planning and the use of advance directives can reduce or eliminate the confusion, indecision and stress associated with difficult end-of-life decisions. Your family and those closest to you, along with your health care provider(s), may be faced with difficult decisions near the time of your death. Having an advance care plan helps everyone better understand your preferences in order to provide treatment that is aligned with your desires, should you be unable to speak for yourself.
Everyone 18 years of age and older should consider having an advance directive, regardless of their health. An advance directive is particularly important for people who have ongoing health problems or a life-limiting condition.
An advance directive is only used if you are unable to make or communicate your own decisions. The directive would be used to guide the decision making of the medical staff, health care power of attorney (agent) if one has been selected, and your family or those closest to you.
A living will is a written document in which you state your preferences regarding life prolonging medical treatments in specific situations if you are unable to communicate for yourself.
A Do Not Resuscitate Order (DNR) is a written order completed by your physician or health care provider at your request. This form is typically completed for individuals with an end-stage chronic or terminal illness. The DNR tells health care providers, including emergency medical services (EMS), NOT to try to revive you if you stop breathing or your heart stops beating. If you do not have one of these forms filled out, EMS workers are required to start CPR or advanced life support.
A Medical Orders for Scope of Treatment form (MOST) is a medical order completed by your health care provider, based on your preferences for specific life-sustaining treatments. This form is typically completed for individuals with an end-stage chronic or terminal illness.
A Health Care Power of Attorney is the document completed that allows you to appoint a “health care agent” or “health care proxy.” This person becomes your “voice” regarding medical treatment if you are temporarily or permanently unable to communicate health care decisions for yourself.
Yes. You can fill out a form called a health care power of attorney. This form lets you name a representative or agent to speak for you. It is crucial that you have conversations with whomever you designate as your agent, so they know what your preferences are and can advocate for you. If you do not name someone to be your agent, then state law has a set of rules for how decisions will be made for you if you can’t speak for yourself. You can also make a choice to have your preferences as stated in the living will take precedence OR give the power for making health care decisions to your agent.
Your health care power of attorney (agent) is expected to act in your best interests and make the same decisions they believe you would have made yourself. They should, therefore, be someone you trust to listen carefully to your preferences for future medical treatment and to then faithfully represent you when you can no longer speak for yourself.
Your agent may be called upon to make hard decisions in difficult situations so you need to have a reasonable sense that whoever you select will be able to carry out your preferences. People often select family members but your health care power of attorney (agent) can be any person who you believe can fulfill this role and is 18 years of age or older.
Yes, you can change or revoke your advance directive while you are still able to make and communicate decisions for yourself. If you want to either make changes or revoke your directive, make a new directive and destroy all copies of any old ones. Make sure you tell everyone who had a copy of your previous advance directive that you have done this and give them a copy of your new directive.
No, definitely not. Euthanasia is the deliberate action of causing the death of someone who otherwise would not die. This is completely different from the withdrawal of a treatment that is regarded by the patient, the health care provider(s), the health care power of attorney (agent) and family or those closest to the patient, as futile or overly burdensome. In this situation, the patient is dying from the underlying illness or injury and nature is being allowed to take its course.
If you have discussed your preferences with your health care power of attorney (agent), family and those closest to you, they will be able to pass on this information to medical staff as they will be the ones contacted to discuss your condition. They will also be able to provide your advance directive to whoever is overseeing your medical care.
When there is an emergency and your advance directive is available, medical decisions will be made by reviewing your preferences and discussing your situation with your health care health care agent, family and those closest to you.
If your directive is not immediately available, life-prolonging measures may be started until medical staff can contact your health care agent, family or those closest to you. If it is clear after discussions with your health care power of attorney (agent), family and those closest to you that your preference would be to stop treatment, this can then occur.
If you become sick or injured and cannot communicate for yourself, health care providers will make treatment decisions based on what they believe are your best interests. This could include treatments that you might not want. If you feel strongly about certain types of treatment that you would not want to receive, then an advance directive is a good way to communicate your preferences.
If you do not have a health care agent, NC law requires health care providers to look to the following individuals, in the order listed below: legal guardian; an attorney-in-fact under a general power of attorney (POA) if that POA includes the right to make health care decisions; a husband or wife; a majority of your parents and adult children; a majority of your adult brothers and sisters; or an individual who has an established relationship with you, who is acting in good faith and who can convey your wishes. If there is no one, the law allows your doctor to make decisions for you as long as another doctor agrees with those decisions.
Cardiopulmonary Resuscitation (CPR) is pressing on your chest to keep blood flowing and assisting with breathing, such as mouth to mouth assistance. Sometimes electrical shocks are used to help re-start the heart.
No. CPR’s effectiveness depends on things such as your overall health and your age. It does not work well for most people who have a life-threatening illness or who are older than 80.
Artificial respiration /artificial ventilation means getting assistance with breathing when you can’t breathe adequately on your own. A tube is put in through your nose or mouth into your windpipe. If this tube is needed for more than a few weeks, a surgeon will probably need to put the tube directly into your throat/windpipe. Doing this causes problems with talking, eating and drinking. The tube is attached to a machine, which makes it difficult to move.
Artificial nutrition and artificial hydration are medical treatments that allow you to take in food and water when you cannot eat or drink on your own. Fluids can be given intravenously (IV) through a flexible tube placed in a vein, but this is usually done for only a short period of time. Sometimes food and water are given through a tube that goes down the nose and throat into the stomach. If a feeding tube needs to be in place for a long time, it is surgically placed directly into the stomach. This allows you to get nutrition, but it is very different from ordinary eating and drinking. You would not be able to taste or feel the food and liquids.
Sometimes, but not always. If you have a terminal condition and can’t eat or drink, this usually means that your body has stopped working like it should and will not improve. In this situation, tube feedings (artificial nutrition) or intravenous (IV)/artificial hydration will not make you healthy again and may even add discomfort.
If you have a medical problem that will cause you to die and you don’t want artificial treatment(s), you will still be made comfortable. Making people comfortable during the final part of their life is called palliative care. Even when there is no cure for a condition, health care providers will still treat pain, nausea, anxiety and other unpleasant symptoms. Comfort care will always be part of the treatment plan.
No, the state of North Carolina does not require a lawyer to complete an advance directive. Your health care provider or someone experienced in advance care planning can help you complete this document. You must sign the completed form(s) in front of two qualified witnesses and have your signature notarized.
Ideally, yes. You should discuss your advance directive with your health care provider prior to completion. This will help you make the best decisions possible, specific to your health condition and aligned with your values. By including your health care provider in your choices, the health care team treating you in the future, will understand that you were well informed prior to making your decisions and this will help them to follow your directive with confidence.
Participating in advance care planning gives you the opportunity to talk to your family or those closest to you, as well as your health care provider(s) about future medical care. After these discussions, your preferences can be written down and a trusted person identified to serve as your health care agent to make decisions for you if you are unable to do so. Putting your preferences in writing before you are seriously ill or injured is the only way to make sure everyone knows what you want or don’t want.
Talk with your family or those closest to you. Close loving relationships don’t necessarily mean that loved ones know or understand your preferences in relation to future medical care. These choices should be talked about with the people who would most likely be involved in making decisions on your behalf.
Your health care provider(s) can also help you to understand your current health and what you might need in the future. You may want to consider discussing this with your pastor or a member of your clergy/church. They can also provide information about the potential outcomes of treatment, which you can consider in deciding if you would want certain treatments if this meant you might not return to your previous quality of life.
It is best to speak with someone experienced in advance care planning – Check out the Find an event near you tab to learn about upcoming events in your community.
- Provide a copy to ECU Health to be included in your ECU Health Electronic Health Record. You may use the cover sheet enclosed with the toolkit to send your documents to the ECU Health Information Management Services department, or take a copy to your next appointment with your ECU Health provider. Your documents will be scanned into your Health Record.
- Provide a copy to any other non-ECU Health providers involved in your care.
- Consider also uploading your document to the North Carolina and/or federal registries so they are accessible by other health care providers and institutions if needed.
- Share a copy of your documents with your family and/or designated health care power of attorney(s).
- Discuss your choices with them to assure they understand what matters to you.
- Discuss your choices with your health care providers on a routine basis to assure they know what you want.
- Keep your original documents in a safe, but accessible place.
- Keep a copy of your Advance Directives in an accessible place such as the glove box of your car, so even when traveling, they are available to emergency personnel or your health care providers.